The Mounce Family

Running and Running and Running

2011-03-11T08:55:00.000-08:00

Mom here and I am EXHAUSTED! I feel like we are constantly in motion running from taking kids to daycare, mom to work, returning phone calls, kid to the doctor, running back home to meet caseworkers and new therapists. Every night this week we have had someone at our house at 5:30 either to work on adoption for our girls or to assess Andrew or to renew our CPR certification. And then today comes.....one baby girl vomiting canceling out my day of work. AAAHHH the joys of parenthood.

Our big boy Andrew is doing well and is such a source of happiness for the whole family. He has been on a seizure medication called Topamax for some time now to reduce his breatholding and hyperventilation. He seems to be doing somewhat better on this medication but it has not cured breatholding and hyperventilation, which are both part of Rett Syndrome. He was placed on a nasal steriod to help reduce swelling for mild sleep apnea and a 24 hour EEG was recommended to be done from his sleep study results. Not really wanting to do that one just yet as the last time around it lasted 3 days due to faulty leads. He also got a new team of therapists, PT, OT and Speech as our insurance changed as he no longer qualifies for ABA I am super excited about getting him back on track with therapies. He finally got his wheelchair after battling with insurance and medical equipment companies for 2 and 1/2 years. Although Andrew can walk his endurance is weak and long distances aren't possible. This makes things so much easier for trips to the zoo, sea world and Morgan's Wonderland as well as the mall. YEA for Drew!!! Our big source of stress lately has been what will Kindergarden be like next year for our sweet boy. We will be meeting with a special ed director in 2 weeks to determine what kind of placement will benefit him best. Andrew continues to struggle with hand function and movements and when his hands aren't wringing he is asleep. We are hoping to find something besides his arm immobilizers to help with this. We will be taking him to the Rett clinic at TX Children's in 2 weeks so stay tuned for updates.

One big YEA for our family is that our girls will be adopted in May. Could this really be??? Finally after almost 2 years of fostering they will forever be ours. I love my girls! And I really love our new baby Norah Grace. She is such a sweet baby and reminds us of how precious Andrew was at this age. Thank you God for our sweet kiddos. Before we know it they will be in junior high.

Consistently Inconsistent

2010-10-12T19:32:00.000-07:00

I read this subject title on an email today and immediately thought of our Andrew. He has had various therapies over the last 2 years as well as school. Every thing we have attempted to teach Andrew over this time has relied on data, evidence basis to prove that he understands or can complete a task. We have had a hard time proving to educators and therapists that Andrew is really still inside this little wandering body and knows more than what he shows. Most people are not as positive about Andrew's skills as we his parents are. I guess it's only natural but it really doesn't help in that the data collected on our sweet boy looks like a bunch of mountains. He has days where he is spot on- performing well, eye gaze great and leading us to believe- he knows so much. And then the next day or next few days he is non responsive, bored and data is 50% or just a chance that he got the correct answer or performed the task correctly. So frustrating!!! With Andrew I try to think about how it would be if I struggled with breathing- alternating between hyperventilation and breathholding while my hands kept moving even though I am trying to make them stop. I don't think I could concentrate long enough to make choices , pay attention at school or answer questions through eye gaze. More than anything I just want educators and therapists to give Andrew and other children/adults with disabilities the benefit of the doubt. It's when you least expect it that these folks really shine.

A Whirlwind of Emotions

2010-10-06T09:56:00.000-07:00

It has been forever since I have updated all on our family. It has been a year that we have had two precious foster daughters with us and what a year it has been. They have truly changed our lives and Andrew's life in so many wonderful ways. What can I say? We are blessed! Rose is our crazy and outgoing four year old, always nursing Andrew and bringing him out of his room to engage with the family. She is just a mess and makes me laugh so much. With her age comes drama though and wow I do not look forward to teenage years with her. Madison is our baby and we like to call her our "chiquita." She is small and had such health problems for the majority of time she has been in our care. Doctors thought of her as failure to thrive, developmental delay, possible Turner's Syndrome. Nope- she is walking, talking and thriving so well. She may have some learning challenges in her lifetime but she is doing soooo well and we couldn't be happier with this little girl. She is super dramatic too and loves to steal Mom's attention from her siblings. We are in the process of adoption for these two and I can't post pics yet. We were blessed when their parents rights were terminated this summer and while it is very sad it is also a wonderful for these girls. They are a joy and our life is so much fuller because of them.

Andrew is doing well. In March he had surgery for a feeding tube as he completely struggled with losing weight and his ability to chew and swallow. He got to where he was starving right before our eyes. Since March he has gained almost 10 pounds! YEA for the now big boy who is soo tall and really making his mommy sad at how much he has grown. I was just hoping he would stay 2 or 3 forever. He is now in an inclusion class at school that we fought to get for him and he rides the bus to and from school. He just loves it! He will also be getting nursing services soon. This will be an adjustment for him and for us as he has had the same caregiver for almost 2 years. He is really needing a higher level of care due to the feeding tube and this would allow for someone to go with him to and from school and stay with him. Another set of eyes but also a helper for him and I hate it that he has to always have someone but he needs it. We have really gotten use to someone always being in the house for him during the day just not on the weekend. He is still our happy boy, a real angel, smiling and just loving all of us and life everyday. He is like seeing a glimpse of Heaven everyday and I am so thankful for everyday we have with him.

We will have a new arrival in January with our second baby and fourth child, a little girl. Still don't have a name yet but am trying to work on it. We were more overwhelmed with the idea of having another child in the home but as it gets closer we couldn't be more excited about her. So, that makes 3 new children to our family in around 18 months of time. Wow! It is a a bit crazy but I wouldn't chose it any other way. We prayed for so long for God to bless our family with more children and He has!

So Much to Say

2010-01-09T15:08:00.000-08:00

Where do I begin? It has been too long since my last post. We have adjusted well to being a family of five and have enjoyed so much being the parents to two beautiful little girls. We had no idea how much we would learn and grow as parents and how quickly we could become attached to someone else's children. In other ways we had no clue how easy we had it with Andrew. He is the sweetest, easiest child ever. He has never talked back, told us "no", or needed timeout five times in a day. It was definitely a change for us taking on the girls, especially our little three year old, Rose. It took Andrew some time adjusting to have siblings as well. After the first two weeks he would cry at the dinner table if the baby cried or even if someone else was getting attention. It was definitely a challenge when all three kids would go off crying or yelling. WOW those nights were fun. Rose has grown such an attachment for Andrew and it is something I always wanted for him. She calls him her "buddy" and she knows that he is special and different yet treats him like her best bud. We often find her talking to him, feeding him, and singing to him when he is upset. It is precious!

Madison is our little one and she is such a cutie pie. When we first got her she couldn't do anything but sit and stare. She had no affect and was severely delayed. With help she is now scooting around the house and playing with toys, laughing, playing peek-a-boo and babbling. It's a fun time for her right now. She is still delayed and needs a lot but she is getting there and we sure do love this little girl. She does have digestive problems and asthma and was actually hospitalized over the holidays but is now doing better. Precious baby!

I think that part of my staying away from this blog has been due to confidentiality issues with now being a foster parent. I am always trying to be careful about what I can and can't say and for sure I am not allowed to post pictures, which stinks, because we have some really cute ones. Being a foster parent is a challenge in a lot of ways. In some ways I have felt like I have no rights and that the biological family is always a priority. It has been hard but in the end I know that these girls are worth all the pain and frustration that we have and are yet to experience. They deserve a stable, consistent, and loving family and if they ever become available for adoption we will for sure go for it.

Andrew has really enjoyed the new additions to the family, but has had some real struggles lately. He has been unable to put on weight and has had lots of trouble with chewing and swallowing food, which have always been his favorite activity. It takes him an hour to eat a meal and it really only half of what he could eat a year ago during meal time. We have tried nutritional supplements, giving him fatty greek yogurt everyday for breakfast, cooking food in avocado oil, but no luck on his weight. We actually went this past week for his annual aptmts at Texas Childrens. Doctor Motil, his GI, has recommended a G-tube (feeding tube). We knew he was headed down this road as most children with Rett battle feeding and swallowing during their life. We saw his GI back in September and she gave us these last few months to keep trying and to really think over this possiblility. I have a lot of mixed emotions about this but don't really feel like writing them out at this time. Other than feeding he is still our happy boy that brings us so much joy and we are so thankful for everyday with him. I just can't believe my baby is four years old. I love him now but I was really hoping he would stay about 2 or 3 forever. Time flies.

New family members

2009-09-30T08:30:00.000-07:00

It has been a little while and we have had some news to share but been slow to post. We have two foster children that have been with us for 2 weeks now. They are sisters, a three year old and a one year old. Rose and Madison. We aren't sure how long we will have them but would love to have them forever. They are the most precious girls and we are a lucky family. It has definitely been a little crazy around here- getting everyone off to school and daycare, everyone fed, backpacks packed, shoes tied and not to mention the hair done. I had no idea the first week what to do with a girls hair. I am learning and loving it. Friday night we did nails together. Too fun! Andrew has enjoyed the girls up until the last few days and now will cry when the slightest bit of attention is given to someone else. He is learning to and adjusting. He is also taking hippotherapy every Wed. and loves to ride- so much so that he fell asleep during his evaluation on the Welsh Pony. I will try to keep up a bit better with the updates but for now we are having lots of fun and adjusting to a big family. GOOD TIMES!!!

Been Awhile

2009-09-07T19:14:00.000-07:00

It has definitely been a while since our last post. All is good in the Mounce house. A few weeks before school started Andrew got sick and was not eating or swallowing well. We got very concerned and realized how possible a feeding tube was for him. With lots of prayers and well wishes he is back to his hungry little self and could eat all day if we let him. It still takes him a while to eat everything but the appetite is there and we are soo thankful. Breatholding for him has gotten worse as he is holding his breathe for longer periods and straining while his face turns red. He hasn't passed out yet that we have noticed. It is a part of the syndrome that we have no control over and bless his little heart it has to be really hard for him to focus when he is doing this.

Here is a picture on his first day of school this year. There is a big glare but isn't he adorable?? We had a wonderful summer and got to visit some sweet friends in Kingwood. This is Andrew's buddy Lincoln that we haven't seen in several years. He was so great with Andrew and treated him like any other little boy. I still laugh when I think about him having a pillow fight with Andrew on the bed. Andrew loved it! What sweet boys!

We also got to see our Granny in Huntsville and go to church with her. After a day of driving, church and a good Chinese buffet he was pooped! Granny - we love your crayon scribbles on the chair. What beautiful artwork.

Andrew is back at school and loving it. He smiles every morning and gets super excited as I talk about seeing his friends. We had some photos done by a friend back in Dallas 2 weeks ago and I can't wait to share some of the pictures from that. He loved walking around the barn, watching the turkey and chickens and looking out at the pond. He will soon start hippotherapy lessons with a physical therapist at a place east of town once a week. This is the therapeutic horseback riding and I am sooo excited for him to get to ride. He loves animals and being outside so I think this should be right up his alley. We also have an augmentative communication evaluation this week with a speech pathologist. I really hope this goes well and I just hope that she will see what a lot of us do- that he is a smart boy and that he is in there. He understands so much lately and it is exciting to see him learn new things every day.

As for our quest to adopt a child- we were unable to adopt Felix the boy we had mentioned previously. He is an adorable little boy that was placed with another family and we are thankful that he now has a home. We were one of four families interested in him and after the waiting are thankful that he just has a family. We were called this week about a 19 month old girl east of town that needs a foster to adopt placement and her caseworkers are reviewing our file with many others to determine the right family. We are not really anxious about it and don't know what to feel. I feel like our family is red flagged because we have a child with special needs and Felt and I realize that if we never get a placement that we are ok. We would not trade this life or our Drew for anything. We have learned more from our sweet boy than we could ever have imagined and we know true love because of him.

Anxiety and a Little Depression

2009-08-12T07:19:00.001-07:00

We have been dealing with a little of both of anxiety and depression lately. Last week Andrew woke up every morning screaming and whining and stayed frustrated and anxious all day throughout therapy sessions. It was very difficult for the therapists to work with him and everyone was wondering what was going on. The routine was the same and we were doing everything we could to keep him calm and happy but we couldn't let him watch the Mickey Mouse Club House all day or let him listen to the same CD over and over- which let to some major meltdowns. It would start at 5 in morning when I would wake up and hear him whining and screaming. Wow that tested our patience and thank goodness for a great support team of attendants and therapists. The anxiety which disrupted any good work in therapy was finally resolved Friday morning when he woke up and was quietly cooing in his bed. I was soo relieved and my happy boy was back.
He had a great weekend going to a birthday party for one of my patients. I should have taken pictures because he had so much fun with the inflatables and me bouncing him. My back is killing me now but is was worth it to truck him up an inflatable slide and slide him down while he laughed. What we will do for a smile! He loves being around other children and watching them play. His Nonnie and Dandy came to visit and Nonnie watched him Saturday night so his dad and I could catch a movie. Thanks Nonnie you are the best!
Sat and Sun is when I noticed some new things with him and then the depression or should I say sadness hit me. He first displayed breathholding at 2 and 1/2 years and now this past weekend started holding his breath till his face turned red and almost passes out. I had read about this and was even told that this could occur by his neurologist, but seeing it first hand scares you to death. He gets lightheaded and dizzy and then it happens again and again. And nothing stops it and there is nothing to treat it and I have been told to just prepare for him to pass out and come to breathing normal again. It isn't a behavior it is just part of Rett Syndrome and I hate it. His hand movements changed again this weekend and although he continues to clap and wring his hands he now pulls them to his face in a praying position and hunches his back over like an old man. This morning he started shuffeling his feet while staying in one position and just last month started some shaky and jerky movements with his head. AAHHHH. Last night I was just filled with sadness. Sad that this syndrome is taking over his body and will continue to do so and sadness that it limits him in so many ways. We continue on this journey and make the best of what life has given him and us but there will always be sadness on some level and there will always be times when we will greive or are depressed about it.
School will be here soon and I am a little anxious about sending him without a 1:1 aide considering all that is going on with him. We had two falls yesterday. The first he hit his mouth on the kitchen countertop and the second he fell backwards and hit his head on the floor. What a rough day he had. On a funny note when he holds his breath, face gets red and veins are popping out of his neck, he gets very lightheaded and will sometimes laugh while I am panicking. What a stinker!

Mini Vacation

2009-07-29T19:00:00.001-07:00

Last week Andrew and I had a mini vacation planned around his aptmt at the Blue Bird Circle Rett Center in Houston. We visited a Granny (my aunt), and our sweet friend Stephanie in Kingwood. I wasn't sure how Andrew would do as I usually don't travel across the state without Felt or a grandparent. Andrew did well and I now know that we can plan more trips without any problems. In the past we dealt with lots of screaming and tantrums that we couldn't figure out and now we aren't dealing with those on a daily basis- so good times! During the trip Andrew did very well with potty training and stayed dry until we got to a gas station. He knew he wouldn't be able to sit on the potty comfortably at those times so he would look at me when we got in the stall and pee in his pullup so that I could quickly change him. Pretty smart!

We had a good visit with Dr. Neul and he spent 2 hours with just us. What a terrific doctor!! He discussed any concerns we had. He gave me lots of information. Some of the things I remeber now are the talk about Lexapro- an anxitey med that Andrew has been on for several months. It was originally given to him for sleeping, to help keep him asleep but really doesn't work as he gets up at five every morning. Dr. Neul said that many girls are on this med and they are unsure if it helps with their breathing and or with their rigidity. I haven't noticed it helping with either and it seems as though Andrew's hyperventilating is getting worse. He is panting a lot starting at five in the morning and it is starting to worry me. I know that if he passes out he will come to but the thought of it scares me. Dr. Neul felt like the episode I described as a seizure may have been a Rett Tremor- something that the girls do when they are in and out of sleep. He also said that we need to be massaging Andrew's fingers daily because he is crossing them when wrining his hands and eventually they could stiffen to always be crossened at rest. He encouraged us regarding a communication device for Andrew and said that he thinks the school district is silly for saying he isn't ready. As for weight and height- Andrew really hasn't gained any weight or height. A big disappointment! I really thought he had and we worked hard on it but I guess he lost what we thought he gained,. And he is only a centimeter taller. With this syndrome they have difficulty growing and their hands and feet become small. Andrew's feet stopped growing in January of 2008. It really worried me at the time but when we began to look at the possibility of Rett Syndrome it all made sense. I guess I never realized that his hands would stop growing as well. Back to square one and this time we are looking at nutritional supplements.

This past weekend Andrew got to play at his Nonnie and Dandy's house while I visited with some old coworkers from Dallas. The ladies and I drove around the hill country and went to several vineyards for wine tasting. It was lots of fun and great to catch up with friends. Nonnie (my mom) took these pictures while Andrew and I were exploring the kids room and looking out at the lake. What a sweet boy! I feel so lucky to get to be his mommy.

Busy Summer

2009-07-14T18:48:00.000-07:00

I haven't posted anything in awhile and I guess life got a little busy. Andrew had his real first dentist appointment and had to be put to sleep to have his teeth cleaned. They found 2 cavities! What?? We just introduced candy to him several months ago for potty training. At least they aren't his permanent teeth, right? He is very difficult to brush his teeth and screams and closes his mouth the moment he sees the toothbrush. I have to get better at this. So, what I thought would be a one hour appointment for dental cleaning took 3+ hours because he is so hard to wake up when he has had anesthesia. I rushed home from this appointment to talk to a scientist who is doing reserach on the Rett boys only to find out he wasn't interested in Andrew's case because of his Somatic Mosaicism. Aaah, a little let down. And after a 20 minute rest Andrew's first therapist showed up ready to go. Back to the grind.

We also took a family trip to Lake LBJ, where Nonnie and Dandy live. We took the Adams family with us and even our big Lucy (or as Rose likes to call her Bucy). We all had a blast and Felt and I can't remember the last time we did that much when we visited my parents. We played on the water, went tubing behind the boat, and relaxed in the sun. Andrew loved swimming in the water even though his life jacket swallowed him up. He just smiled and looked at me so sweetly in the eyes. I love being able to hold him in the water. After a day full of fun we came back to the grandparents house and while Andrew was sleeping for 20 minutes or so, he had a seizure. He hasn't had one in maybe a year., not really sure. He opened his eyes and looked so scared and was shaking all over. It lasted about a minute and seemed like forever. We haven't seen anything since then and hopefully we won't.

We continue to be busy trying to get things done for our foster/adoption license. At one point we were told July 6th we would have it but that day has come and gone and now we are looking at two weeks from now. Who knows? It is definitely a mess and I totally understand why more people don't offer up themselves and their families to do this. We are still looking at adopting a two year old boy named Felix. He was taken off the adoption website and after asking several people it seems that his caseworker is waiting for us to get our license. He is absolutely adorable and although we have never met him Felt and I feel like we have some kind of connection to him. I know it seems silly but at night I sit and wonder about him. I wonder if he has a foster mom or dad in his group home. I wonder how the other 12 kids in his home treat him. I wonder who tucked him tonight and did they say a prayer with him or read him a book before bed. Aahh. A lot of family and friends have asked us why we don't just have another baby than go through all of this and why on earth we would want to adopt a child with special needs. I don't have the best answer for the question but here goes... We have always wanted to adopt a child. When Andrew was diagnosed with autism and then Rett Syndrome we considered never having any other children ourselves. We were introduced to an awesome family who had adopted a child from CPS and had another friend starting the foster process. Our interest began to increase and we saw a need. We took the parenting classes, a requirement for the foster/adoption license. We knew this is something we wanted to do and started the process. All while we were not thinking of special needs children. The more we read about the children that were available and their needs, the more our hearts began to open up. When we saw Felix and a description of his needs we thought- that's nothing and we can handle that. Some people have questioned if he or another child we might would adopt would have ongoing medical problems or learning problems. Our response to that is -don't we all have ongoing problems? Who is really ever perfect anyway? I think our home and our family is set up much better than most for a child with special needs and we already know so much about the medical community here in town and around the state. So, the whole situation really is in God's hands and we can still have more biological children in the future if we choose to. I'm not too old yet!

Next week Andrew and Mommy are taking a week vacation for doctor's appointments in Houston and visits with friends and family throughout east Texas. I am a little nervous to have him away from home that long but also excited to see how he does. It's time he deserved a break from all of the therapy. Too bad we can't get a break from the heat!

Summertime Fun

2009-06-14T18:17:00.000-07:00

This afternoon we had some fun outside with the beach ball water sprinkler. At first Andrew just stood in the water and wasn't sure what to think.

Another picture of the wrinkled nose. I would love to know what he was thinking. Probably wondering why mom is taking so many photos and calling his name.

A picture of how calm he gets when he is outside. If only it wasn't 100 degrees out for the next week.

Another picture of our happy boy!

Progression of Hand Movements

2009-06-14T13:52:00.001-07:00

Andrew's hand movements have always changed since he turned two. At first he started putting his hands behind his back and everyone at daycare thought he had such good manners when he walked in the hall. It then moved to the front where he held his left hand in his right. Within months he started to wring his hands scraping fingernails across the inside of his right palm causing blisters. Then it changed to where he would pat everything in his environment one or two times and then wring his hands. We were a worried about this but thought that at least he was exploring toys and other things through patting. He loved to pat our trashcan and hear the sound it made and because he loves music he broke his boom box several times by patting it so hard. At Christmas last year he started to clap his hands. My parents were excited about this and I got worried knowing it wasn't a real clap of happiness for him. He would clap his hands sometimes ten times and then wring them tightly. The past few months the clapping has quieted and he isn't able to make quite the sound with his hands that he first had. He now claps his hands and turns them to a wringing position and then pulls them apart on his face which just gets yucky when he is eating or is snotty from throwing a tantrum. We have also noticed that his fingers are starting to get mis-shapen over the past few weeks. He crosses his index finger under his middle finger on both hands while wringing and clapping. And the wringing is constant-all day sometimes right along with teeth grinding. This is the one that kills us! It really grosses me out and he no longer stops when we tell him to.

This past week we learned of some problems with his MDCP program- this is the one that provides the attendant for him. Apparently he now has to have an adult -myself or spouse or grandparent while a provider is here. Which doesn't help me out at all. Not sure what we will do but essentially I have to quit working or find a babysitter quickly. Here we go again!!

We are one step closer to getting our foster/adoption license. What a process it has been. We learned last week of a two year old boy that is available for adoption that has some special medical needs but overall just a little delayed developmentally. We talked with his caseworker and are hopeful that we can get more information on him. He is adorable and we both think he would be a great addition to the family. We have prayed about it and know it's in God's hands if it's meant to be.

Boys with Rett Syndrome

2009-06-05T07:05:00.000-07:00

What a week it has been! Andrew's last day of school was yesterday. He is really ready for a break. Apparently he cried for the 3 hours of school and for the last 2 weeks has refused to walk down the hall to class or from class out to the car. It's very frustrating for his teacher and myself because we know he can walk and we want him to use those legs as much as possible. The more he walks the better off he will be in the long run.

This week I talked with another mom of a boy with Rett Syndrome. Her sons name is Luke and he is 6 years old. They found out a year ago that he had a MECP2 mutation as well and was diagnosed with Rett Syndrome. His mom and I talked on the phone for an hour and half. It was so nice to talk to someone who understood where we were coming from and it was good to feel like we aren't in this alone. Their journey with this syndrome has been a lot more difficult and Luke has encountered feeding tubes, vision difficulties, seizure disorder, and a ventilator to help him breathe. His mom is so good and has a great outlook on things and Luke is adorable. What a neat family and I just wished we lived closer.

Since Andrew's diagnosis in November I have searched for other boys with the diagnosis and been in contact with 5 here in the US. One mom that I have been in contact with the most has a son who is 23, and the others are all younger than 10 years. They are all different in many ways but most of them have tracheostomies, are G-tube dependent and some are on a ventilator. In the beginning every thing I read stated that the boys with Rett Syndrome died in infancy but I am finding that this is not always the case. There are boys with Rett syndrome and although there are few they are still a part of this terrible disease. I know there will be a cure someday and there is research being done to help these boys and girls. Thank you Rett Syndrome Research Trust you have given me a lot of hope!!

In talking with other families Andrew's mutation is different than any of the boys and girls. Initially I thought he had 2 X chromosomes and a Y. Andrew has somatic mosaicisim. Not really sure what it all means, even though it has been explained 10 times to me. I just don't get genetics and probably never will but here is the definition.

Somatic mosaicism -- the presence of genetically distinct populations of somatic cells in a given organism -- is frequently masked, but it can also result in major phenotypic changes and reveal the expression of otherwise lethal genetic mutations.

Andrew is more like the girls with the syndrome than the boys. His progression of hand movements and going through the regression stage as well as most of the other clinical features. We always knew he was a special little boy and are just thankful that he continues to do well overall.

One yea for the week- we have had several contractors come out to look at a remodel for his bathroom. We are thinking long term for him and looking at making the bathroom handicapp accessible and having a roll in shower. He may not ever need a wheelchair but just in case that happens it would be nice to have the bathroom ready for him. I think it would help us out now too in that we are needing a reclined bath chair and need the tub taken out. His bathroom is really small and the more room we have the better so we can continue to work on potty training. When you have 2 adults and Andrew in there it gets kinda tight and we have had several accidents already. We are still thinking about it but it is really wonderful that the Medically Dependent Children's Program in Texas pays for things like this.

Memorial Day Weekend

2009-05-29T07:04:00.000-07:00

This past weekend we spent time in Dallas with Felt's family and visitng the Hansen familly. We had a lot of fun visiting Greenville, TX and taking in a game of Rangers vs. Yankees. It was a lot of fun but the Yankees wooped the Rangers. But, the next day the Rangers beat the Yankees. AHH!

Andrew and his Aunt Whitney. He started out with hat and glasses on
sitting down but it got hot and humid quickly and he spent time walking
around with his grandmother.

Here is a photo of Grandad and Uncle Brandon. Grandad always
has his guns up for those Red Raiders. He wishes we were all Texas
Tech fans.

Photo after the game. He has a weird expression but lately

he loves to wrinkle his nose. Silly boy!

He sure loves his Aunt Whitney. What a sweet boy!

Pictures of our Little Man

2009-05-21T13:40:00.000-07:00

Finally some pictures of Andrew
at school. I took these as
he was coming out of preschool.
He looked worn out today.
I was afraid he might swing
backwards off the bench, but
he managed to sit for a bit to get
these pictures.

What a big boy with his

backpack on. I am so proud

of him. YEA Drew-Drew.

Reflecting on the Last Post

2009-05-18T18:07:00.000-07:00

After posting about today's ARD meeting I realize that I was wrong about things. I could always choose to delete the last post but I thought I should keep it to show myself and others what emotions parents go through at these meetings. After reflecting I know that all staff members that were there today really do care for our Andrew and want the best for them. They may not always know how to go about providing the best education for him and neither do I. I tend to have a guard up at these meetings and don't really let people in and I'm not sure why. Andrew's eye gaze is probably not want I think it is and I guess I had hoped he would be ready for a more advanced system of communication. I feel like I asked questions but got no answers and that is hard for a parent that wants her son to make progress.

I remember back to working in a school and talking with a parent of a child with severe autism before their ARD meeting. I asked them what was most important to work on in terms of speech therapy. The father's response was "I just want him to talk." This was a child that had once talked and gone through regression and never talked again. I now look back on that and have a better understanding for what he was going through with his child and I to just want Andrew to talk. I would love for him to be able to tell me about his friends at school and all the the things that he did outside with the neighbors. Sometimes that lack of having what I want for him turns to frustration. Not a good thing!

Throughout Andrew's life he will rely on others to teach him, help him, and care for him. I have to learn to let down my guard and let people help him and our family. I am so thankful that Andrew can go to school with friends and I know he loves it. He has a smile everyday as we walks down the hall. I realize that the staff don't have a lot of knowledge of Rett Syndrome and virtually none on boys with Rett Syndrome. It will be a process of educating myself and the staff throughout his school career. I still feel like there is soo much that I don't know about this syndrome and so much to do to help Andrew. I just wish there was a how to manual on this to tell me and Felt- yep your're doing it right, now try this. Aahhh.

Andrew is now attempting to walk into school with his backpack on all the way to the classroom. I will have to get a picture of it. It's really cute and I know it has to be hard for him.

Another School Meeting

2009-05-18T10:03:00.000-07:00

Just got back from another ARD meeting at school with everyone. They wanted to update and reveiw goals. I hate these meetings. I really hate them. Everyone tries to be sweet and act like they care when I know that Andrew is just another number in spec ed to them. I thought I could handle this ARD alone today and I got a little ticked off and vented frustrations out on the whole group. The teacher who I wasn't sure about a first is actually doing well and trying very hard to help him in everyway possible. I am so glad I have the rapor with her and that she was there. The augmentative communication specialist says that Andrew's eye gaze is poor and that he is not ready for any type of high tech device and that he doesn't always show his communicative intent. I told her I disagree and that the activity that she had done with him must not be very motivating. I told her that we borrowed an M3 from Dynavox but that sadly we weren't able to program it enough to work with. She said he is not ready for that. I told her my main concerns in terms of school are for Andrew to have a voice and asked about what equipment we could get for him to communicate. She said a big mac switch is what they are using. Duh? We have one at home and he has mastered that, can we challenge him? With Rett Syndrome always assume competence! Come on! I got flustered and told her that he could have a tantrum and need to use the restroom but has no way to communicate that and as a Speech Pathologist that really upsets me. I started to cry but controlled it thank God. How embarassing that would have been. Then they argued over using an adpated fork. My main concern with that is that now he can barely use his hands to pick up a piece of food. More frustration. The goals just seem to be a repeat of what we have done with him for more than a year. That has to be so boring for him and I hate it! The SLP tried to add a goal about Picture Exchange Communication System. I informed the team that we tried that in early intervention for more than 6 months but was unsuccessful due to hand grasp and that we had discussed this at the first ARD meeting. Then she tried to say they would use blocks or pegs with pictures on it to for the exchange with communication. Tried that too and it didn't work. When will they start to think outside the box? I am drained. Please pray for Andrew and for me as I feel like school is a total waste other than socialization.

2009-05-15T06:29:00.000-07:00

Andrew struggles daily to use his hands for every day tasks. I thought I would post some pictures of him working on eating with a fork. We have worked on this for a year now and little progress has been made. I have to hold down his left hand so that he won't wring his hands together and so he can concentrate on picking up the fork. Here he is picking up his fork. Notice the food that gets thrown across the table after he takes a bite and then drops the fork. What a messy eater! This next photo is a picture of the apraxic movements that he has. He thinks he is pulling food off the top of the fork but his hand is not on the fork at all. I couldn't caputre the next moment where he puts his right hand to his mouth thinking that he actually picked up the food when he didn't have anything. He often does this over and over and gets easily frustrated. Hard work for this little boy!

Andrew's class had a field trip to the Children's Museum yesterday. Here are a couple of photos of the kids in his class. He had a good time looking at all the fish and playing with magnets.

Andrew continues to do well with potty training. I am so proud of him. He always goes when we take him and he will even have a BM on the toilet too for us. And we have gotten his attendant to buy into the whole idea. We are all a work in progress. Another yea for our big boy is that he is gaining weight. After taking him off the GFCF diet and introducing the candy for potty time, he has gotten a little tummy. I love that little tummy. Hopefully Dr. Motil will be happy when we see her this summer. Sorry about the layout of this post. I guess I am still learning on how to post pictures.

Some Road Blocks

2009-05-08T06:38:00.000-07:00

After not hearing anything from the adoption/foster agency for a week, we got a call. This call was not necessarily good nor bad. Our family was "red flagged" (yes that is the word they used on the phone) for several reasons. The caseworker had some concerns as to why we had never received counseling nor attended a support group after Andrew's diagnosis of Rett Syndrome. I explained that there is no support group for Rett Syndrome here in town and especially not for boys with Rett Syndrome. He is one of 6 known boys in the world with the syndrome. I also explained that Andrew's regression started happening around his first birthday and that we have had plenty of time to process and go through the grief cycles. When we got his Autism diagnosis we did attend a support group meeting. It was not a right fit for us in that many of the attendants were Spanish speakers and had children that were older in school. At that time Andrew wasn't even two yet, and having worked in special education for 5 years I did not need to learn about the ARD (admission-review-dismissal) process. We had just moved to a new town, were both working full time jobs and trying to make all of the appointments for MRI's, sleep studies, EEG's and repeated EEG's. All of this was on top of tyring a biomedical approach to treating what we thought was plain ol' autism. We were doing the GFCF diet, giving him probiotics, digestive enzymes, taking him to the Thoughtful House and even had him on Valtrex for a while to kill what we thought was a virus in his body. And yes that is a STD drug. Scary and gross now. What I am saying is that we didn't have time to fit in counseling or support groups, maybe we should have made that a priority but here we are and we're still making it work. The caseworker feels like Andrew's diagnosis of Rett Syndrome has been very soon- November of 2008 and we still haven't gone to counseling. In my opinion not everyone needs counseling. We knew last spring that this was either Rett Syndrome or Mitochondrial Disorder and were searching for the right doctors to listen to us. Thank goodness for Texas Children's hospital and the Blue Bird Circle Rett Clinic. Although we don't attend a support group for special needs parents I feel like we receive so much support through family, friends, teachers, therapists, and all of the doctors. I even feel like I have received so much support through this blog. Although I have never met any other families or children with Rett I feel like I have. I can read about their struggles and know that we are not in this alone. We fully accept this diagnosis and are at peace with our life situation. Sure, more than anything we want a cure for our son and for all of the girls. After getting off the phone with the caseworker I felt like a bandaid was being pulled off very slowly. Hurt!!! I felt and so does Felt, that we are being judged and some what discriminated against for having a child with Rett Syndrome. You would think it would look good that we have made the best out of an adverse situation but I guess not. We would be better off if we had ten cats sitting in our house and no children. Does that make sense? Not to me! We aren't sure what is next in this process or even that we want to continue with this. Please pray for us and for all of the children that sit in foster homes waiting to be adopted but are being help up with buracracy. It really breaks my heart for these kiddos.

Thought I would add a couple of photos of Drew-Drew. The first one is him crashing out in the recliner while watching Elmo. I wanted to include a photo of him with his hands. This is the wringing that he does that tears up the inside of his hands and has disabled him from playing with toys or eating. He does it all the time except when he is tired.

Our Home Study

2009-05-01T06:50:00.000-07:00

Well, we cleaned the house, got paperwork completed and had our home study Wednesday. It was not as easy as I expected. The case workers were here for 4 hours sitting at our breakfast table asking questions. It was really kind of hard. They asked a lot of personal questions and I had to re-tell our story of Andrew's development and diagnosis in detail. When they left I felt exhausted and worn out emotionally. It's easy to tell a quick version of what has happened to Andrew and our familybut when you have to give all the details and talk about everything else in your life it almost feels like a counseling session where they just sit and stare at you. Glad that is over! They asked us about what ages and kind of children we would be willing to take in our home and told us that we would be waiting and it could be 6 months before we got a placement. We were disappointed and at that moment felt like we had done all of this work for nothing. Not nothing though. We know that God has a plan for our family and his plan is perfect. We know that we want to make a difference in the life of a child or children and that it will happen in his time and not ours. It's hard to sit and wait. I'm not a very patient person. As for the children we would take we said any and all races and children that were ages birth to two years. We told them that we would have to think about any children with disabilities or behavioral/emotional problems on a case by case basis and that we were open to that possibility. 80% of children in the foster care system have been sexually abused and because of that statistic we have to be cautious about the age of the child and the level of involvement. The last thing we would want is for a child to act out on Andrew and him not be able to communicate that to us because of his disability. I really think having a brother or sister for Andrew would be great. I have noticed that he is more fussy at home when he is alone than when we have other children in the house. Maybe it's boredom. So, we wait.

This weekend Andrew will be at his grandparents and I will be in Abilene for a girls weekend. I am meeting up with my best girlfriends from college in our college town. We have no set agenda but we will probably sit in our hotel room chatting all day and night. Time flies! It seems like the other day I was sitting with them in our dorm room making Ramen noodles and Mac and cheese. Ah, good times!

Updates

2009-04-23T06:33:00.000-07:00

Last week Andrew's class had a field trip to the zoo. I wondered if it would be chaotic like it had been the week before. Nope! He had so much fun and the weather was in the 70's with a little drizzle off and on. He loved the birds and the fish. I would point things out to him and suprisingly he would look in that direction about 10 seconds later. He smiled a lot and didn't do a lot of wrining his hands. I have got to take him back, it was soo much fun for him. I really enjoyed talking to other parents there about Rett Syndrome and their children's diagnoses. It was nice to have people around who understood frustrations, disappointments and who could enjoy Drew-Drew. And the best part was that there was hardly anyone at the zoo that day.

We have 2 more ARD meetings scheduled with the school. They are offering summer services because he did show regression this year. I am turning that down because it means a different school 30 minutes across town, with a different teacher, and only a couple of weeks. I would rather work with him at home and take him to SeaWorld, Zoo, children's musuem, etc. Not only that but now he has OT, PT, Speech and his 2 hours of ABA everyday. That's a lot for a little boy. We also have an annual ARD meeting before school lets out to change goals and talk about some concerns I have. I expressed the concern that he doesn't have a voice in class and although they tell me they use augmentative communication, I am not seeing any or hearing about it.

Next week we have our home study with the adoption agency. Our caseworker is suppossed to be here for most of the day. I am a little nervous about how it will go- our needy great dane Lucy rubbing her face on people, Maddie our dalmation waiting for you to drop some of Andrew's food, Andrew throwing a tantrum over Elmo dvd's, work calling my cell phone several times a day, AAHHH! Let's hope we pass!

Today is the big FIESTA party at Andrew's school where Kindergarten has a parade with their
FIESTA floats. Every child makes their own float and dresses up and plays mariachi music as they go through the halls. It's a San Antonio tradition and FIESTA lasts for several weeks with parties and daily parades downtown. I was sad to find out that Andrew's class doesn't get to participate. I really need to start talking to them more about inclusion.

Every afternoon several of the kiddos on the street ring our doorbell to ask if Andrew can come play or 'is he with his nurse?" It's really sweet. We both go out and sometimes with the attendant here and play duck, duck, goose and watch them as they play in the cul-de-sac. One little boy, a 2nd grader asked when Andrew is going to learn to talk. What do you say to that? I told him that Andrew is a very special little boy and that he may never talk but we love him anyway and that's why we help him so much. He was so cute to Andrew and says hi to him every morning as they pass in the hall at school. I wish I would have had a better response to his question, like 'he talks with his eyes.' Oh well. Another little boy sat always asks if he can pull him in the wagon. It is too cute to see him pull Andrew around the street. I need to get a picture. Kids are so great, they just want to help and really love on him. I am so glad that we have the opportunity to show them that Andrew can play too. Just not sure their parents would appreciate them inviting themselves into the house, playing with our crazy dogs, and asking for drinks. I do love this though!

Rett Syndrome Attacks

2009-04-12T13:51:00.000-07:00

Well I have almost lost my cool today. Andrew woke up at 4 am screaming again. This is becoming an everyday occurrence. After climbing in the bed with him he went back to sleep for 20 minutes only to stay awake the rest of the morning swinging back and forth with his hands while I tried to sleep. We made a mad dash to get ready for church and off we went. It was loads of fun pulling him out of the car seat with bag, purse, and umbrella while it poured down with rain. Thank goodness for the handicap parking sticker. He made it almost through the entire service but in the middle of Max Lucado preaching he let out a big burp. It was too funny!
When we got home Felt and I tried to feed him lunch which turned into a screaming fit that lasted 45 minutes. Only Elmo which we are trying to fade out calmed him down. Constipation was the real problem and has been since we have taken him off the GFCF diet. After a trip to the bathroom and an Elmo video we tried again while attempting Vital Stim with him. His swallowing and chewing have gotten worse and since we have 4 months to our GI aptmt I am desperate to get it better. Once again another fit. Every time I do vital stim with him it turns into a tantrum. ARG!!!! I kept on and held his hands while trying to feed him the nutritious meal I made him and we lasted 15 minutes on vital stim. Better than nothing I guess and there is always tommorrow but after listening to the screaming starting at 4 am I am worn out. I am frustrated and days like this I know that Rett Syndrome is attacking him and our family. I would have loved an Easter egg hunt, pictures at church with his cousin and maybe a trip to the park but it wasn't going to happen today. And I would have loved to see him enjoy his cousins birthday party yesterday. I remember back to last Easter when he screamed the entire time we hunted for eggs. Most days he is our happy boy but these days it has become really difficult for us and sad for him. I tried to take him to the zoo last week after preschool. It was immediately chaotic for him with all the elementary schools in town there. He did a lot of the retropulsion-swinging back and forth, but he did enjoy the birds and would stop wringing his hands to look at them when I called his attention. More and more I notice other kids and adults looking at him and staring. People are so insensitive and just don't understand and I guess they are curious too. A year ago most people would have looked at him as a two year old having a tantrum or doing something weird, whereas now people look at him and see that special needs boy. Whatever the case he is our angel and I am thankful everyday for him and the things that he teaches us. I would like to say the staring doesn't bother me but it does and hopefully I will adjust to it like I have with everything else. I look forward to the day when we are all in Heaven and I see him running and saying "Mom, I love you." I long for that day and days like today I am definitely homesick, which makes me think of the song by Mercy Me called Homesick. Please pray for us and I hope everyone has a Happy Easter.

Momma's gettin' old

2009-04-03T16:13:00.000-07:00

Well, I turned 30 this week. Kinda uneventful, but I am feeling a little old lately. My sweet brother Cas and his wife are babysitting this evening and Felt is taking me out for dinner. Although I am thankful for an evening like this, I would almost rather sit in my pj's and cuddle up with Andrew watching tv. I guess I was never big on going out.

This week has been a little crazy. Andrew's attendant (and she is just an attendant not a nurse, not that it matters) and I got into an arguement over her job responsibilites. It started when I wrote on a dry erase board that I wanted her to swiffer the playroom floor and put him on the potty every hour. After calling the agency, she agreed to the list, but soon after vented to my husband who then vented to me. Something about how I don't appreciate her, and I am not her boss, and she does lots of other things that she isn't suppossed to do. It took me a day to get over it but I was really upset by this because I appreciate every little thing that she and anyone else do for Andrew. I tell her everyday before she leaves that I appreciate her. Guess that doesn't count though. Just need to keep praying on this situation and pray that I can back down on my job and only have her here a couple of days.

Andrew is still doing well with the potty training. He wears pullups during the day and diapers at night and goes #1, and #2 when we take him. I thought we would have to sit on the potty for a while but nope, he goes within a few minutes. YEA for Andrew. My big boy! He is also going at school and with the attendant as well as therapists. Yea for generalizing this skill! We still have a ways to go and my hope is that one day he will walk to the potty to communicate that he needs to go.

We had a Dynavox representative come out last week after I called and nagged him about wanting to see the Eyemax device. I had heard from other Rett mom's that it is successful for their girls in communicating using eye gaze. Once the rep saw Andrew he said that the device would not work for him and suggested another device called the M3. He said that because Andrew is walking and constantly moving it just wouldn't work. We tried out the other device using an auditory scan method with a switch. He had to choose between food and music Boardmaker pics. I'm not sure he understood what to do because he kept hitting the switch over and over again. I filed a dream contract with the company and because I am an SLP I get to try the device out for 24 days. So, we'll see. I will keep everyone updated.

Another big yea for our boy- Last week I begged, really begged my boss with the home health agency to make an exception and bill our insurance company for OT, PT, and speech therapy even though they don't take our insurance. He talked with the COO and called me to say that they would accept Andrew's case because I am an employee. YEA!!!!!!!!!!!!!!! Our insurance only covers one clinic in all of SA for these services and that is a no go since he needs home health. Now he will get his ABA, OT, PT, and speech therapy. He will really be a busy boy, but the more the better for him. Man this takes off a big stress for me.

Potty Time

2009-03-25T06:44:00.000-07:00

First of all, thanks to all of the Rett moms who continue to make comments to this blog. You will never know how encouraging and helpful your words and your own blogs are to me and our family. You are awesome and really inspire me to do more for our Andrew. What a blessing to have your support.

For a long time I have thought that Andrew might never be potty trained and that at the age of 25 I would still be changing his diapers, yuck! When we were in Vegas I decided to get him an M&M candy dispenser for the bathroom to work on potty training. I have sat him on the potty off and on since he was 18 months with little to no luck. I really decided this weekend to aggressively attack the issue and sit him on the potty every hour and rewarding him with candy when he did go. He loved it! On Monday he went all 6 times even when he didn't need to go. He would look at the candy dispenser, look back at me, and then look down and pee-peed. YEA!!!!! He got so excited looking at the potty and candy machine that he fell and hit his head on the tub while we were trying to brush teeth. Now that is excited. So yesterday I decided no more diapers and to just wear pull ups during the day hours. The problem occurred when his attendant came over and suggested that he doesn't do it with her and he has no way to communicate that need to go. I got soooo frustrated and told her nicely that if we get him on a routine scheduled potty time he will get his body adjusted to it and will go. She blew me off and put him in a diaper. You can imagine my frustration with this. He is a smart boy. He may have Rett Syndrome but he is in there and he totally understands what we are asking him to do. He went everytime within 2 minutes of sitting him on the pot. When you are on a roll with something like this you don't want to lose momentum and I really felt like we were losing it yesterday. So, back to square one on the job issue. I am now thinking of going back down to 2 days a week so I can give him more of what he needs. If she doesn't believe in him on this then she probably isn't trying to challenge or help him in other areas including the weight gain. ARG!!!!

Feeding difficulties and updates on the family

2009-03-17T11:16:00.000-07:00

I had a phone conversation yesterday with Andrew's GI Dr. Motil. After discussing his difficulties with swallowing and chewing as well as getting his weight up she brought up the topice of a G-tube. It is taking us a lot longer to feed him- used to be 30 minutes for a meal but now taking 45-60 minutes. He is showing signs of penetration and aspiration by coughing after swallowing solids and liquids. She wants Andrew to gain a pound every month and is concerned that he is not getting what he needs due to the GFCF diet. I told her we would do everything we could to get him to gain weight including taking him off the diet. I am praying that we will not have to face a G-tube placement and I would really feel like I let Andrew down if that happened. If I can't help my own son then I definitely can't help others work their feeding problems out. Hopefully in a week I can introduce him to Pediasure and Carnation Instant breakfast. We'll see. I have started doing Vital Stim therapy on him to help with swallowing issues and hopefully we will see some changes in the next couple of months. He is a difficult patient and I can imagine how hard it was for the speech therapists who did this with him in the past.

For those of you who don't know yet, we have decided to become foster/adoptive parents. We are currently taking Pride parenting classes and will have a home study as well as home inspections soon. Once completed we will be ready for our first placement. We always wanted more children in our family and we feel that we will really be able to help some little folks. Although Andrew's care is some what demanding at times we know we have room in our hearts, home and family for more children. We will be fostering to adopt a child and are very excited. There is always a possibility that we will have to give a child back to their birth parents and while that is scary, I trust God and his will for our lives. Please pray for our family and for the child that will come to us.

Vegas was super fun and had to include a picture of us outside the Love-Beattles show.

Gone to Vegas! Woo-hoo!!

2009-03-05T04:04:00.000-08:00

We are leaving for Vegas today to see some family and to have some fun on the strip. Andrew is staying behind and will be getting lots of love and spoiling from his grandparents here at our house. Hopefully the dogs can survive. I am so thankful for this time to get away and have fun with Felt. We haven't traveled without our Drew-Drew in years. When he was 5 months old we went on a ski trip to Colorado for a couple of days in spring break. When we returned home after picking him up from grandparents he wouldn't wake up the next morning. After watching him listless and continuously vomiting, and waiting 5 plus hours in the ER the doctors found he had intususception, where his small bowel collapsed on itself. Thank goodness for the doctor who knew about this as they had already prepped him for a spinal tap, thinking it was meningitis. He had a hospital stay for several days healing from a procedure to correct and it was a very scary time for us. I know that God has taken care of our son and will continue to do so, but it is hard leaving him again. We hope to plan a trip in the next couple of months where he can go and enjoy a vacation too. Maybe the IRSF annual conference in Virginia? Maybe!

Trip to Texas Children's Hospital

2009-02-23T20:02:00.001-08:00

We are back home and racing through another week. Our trip to Houston was a good one and we got lots of good information from the Rett Clinic. Dr. Neul, Andrew's neurologist, says that he is one of 6 or 7 boys in the world with true Rett Syndrome. Can you believe that? He is such a special angel! He gave us some good information regarding therapies and prognosis for Andrew and wanted to include him in a research study. Andrew's GI doctor wants him to gain half a pound each month. He is too thin, but we feed him all day. Go figure! One big word we learned was retropulsion. What a cool word. This is the swinging back and forth motion Andrew does with his upper body. Andrew was such a trooper and even got over the fact that the dentist was an absolute jerk to him. He didn't even aknowledge Andrew and referred us to other dentists here in town. I will be writing a letter on this one. What a wierdo!

I am officially Vital Stim certified and true believer in it. I am planning on purchasing my own unit for Andrew as I believe it can and will help him again with swallowing. My first patient using it will be today.

We are still fighting the everyday battles with having a child with a disability. I have been on and off the phone with the insurance company and with medicaid this morning. We have insurance as a primary and medicaid for Andrew as secondary only based on his disability. Even though we have this I can not get him speech or physical therapy. I am frustrated. No one takes our insurance for home health therapy and none of the clinics listed as providers work with pediatrics. What a mess! It's almost as if we should have never gotten insurance for him, but then he wouldn't get ABA. AARG! The fight is on for this one! I have cried and now I need to press ahead.

Some tough moments for me as mom this week were reading a past favorite book to Andrew before bed. The book is called Hug and this was Andrew's favorite book from 12 to 18 months. It's about a monkey that goes around the jungle watching all the other mamma's with their babies hugging, and the monkey comments 'hug' on each page. Andrew's favorite parts were when the monkey cried and when he saw his mom. "Mama, Bo-Bo.....hug." Andrew sat with me but didn't look at the pages and was more interested in wringing his hands than anything. That was a hard moment for me. I cried for a good while and realize that although I wouldn't trade this Andrew for anything, I miss the little boy that we once had. Looking back at photos of him as a baby- it's just not the same child and I really miss all the things that he could do- even the smallest things like hold the remote in his hand, and turn the pages of a book.

One other thing that is bothering me this week- Dr. Neul says that 1/3 of children or girls with Rett Syndrome, now including Andrew, die from an unkown cause. That means that it wasn't complications with scoliosis, pneumonia, or a heart condition. Unknown! I put this out of my mind until Felt brought it up this week. It terrifies me and I am praying for peace and to let that thought go.

Prayers needed

2009-02-17T19:33:00.000-08:00

I didn't want to post about this but I know I need to. We had an ARD on Friday and Andrew's one on one aide was removed from the picture. The special ed coordinator made a lot of great arguments as to why he does not need one. I don't want him to have an aide unless necessary and I didn't and still don't know what to feel. I discussed our frustration with a lack of progress being made in school and they suggested summer school as well as a teacher conference regarding goals. I left the ARD crying and feeling like somehow I have let Andrew down, like I didn't try hard enough for him. Ofcourse I could call an ARD meeting anytime and argue with them, I just struggle with knowing if he really needs the assistant. They assured me the ratio in the class will still be 1 teacher or assistant to 2 children and that does make me feel good. We are leaving at 4 tommorrow morning to head for Andrew's aptmt at the Blue Bird Rett Clinic in Houston. We will be their for 2 days for aptmts with neurology, GI, and dentist. Maybe they can help me see things clearer and I just pray that they will be able to help us as I sometimes feel like all the aptmts don't tell us much. As for the job situation, my current position is going to counter offer, so I still don't know what to think, regardless of how much either is willing to pay me. Money isn't everything and I just want Andrew to be ok, which I know he will. Please pray for peace in both situations and for some rest, lately I am feeling a little stressed. I will try to post more when I get to Dallas for my training, and thank you Dad for taking Andrew all the way back to San Antonio, you are the best!

Being a Speech Pathologist

2009-02-12T07:57:00.000-08:00

When I started out 7 years ago as a therapist I would never have imagined that my life would be so intertwined (is that a word?) with my profession. I have heard time and time again "oh- than you really know what to do with Andrew". As if it makes our situation much easier. It doesn't, but it has helped in a lot of ways. I have had the knowledge base on developmental disorders, theories of therapies, and understand what strategies should be implemented. Some things have been easier for us and some things have been harder. One of those being the knowledge of what Andrew needs in terms of therapy and how to demand from agencies and schools that he receives the proper treatment. I still have a hard time with comparing him to other children that I service. Last year when I started working part time with home health I got a patient that was 1 month younger than Andrew. I immediately started comparing gross motor skills, play skills, etc. Not really healthy for me to do but I still have a hard time with this as all of my patients are between the ages of 6 months and 4 years. It has helped me professionally with families to be able to relate to their situation, make referrals to doctors and specialists and to tell them what has worked for us. There was a time last year that it was all too much, and I wasn't sure if I could continue being an SLP. There was a lot of sadness for me and for Andrew and all that he lost. Part of the grieving process I guess. But working with my patients made me feel even more sad at that time for all the struggles that they and their families faced. I guess I have gotten past some of this sadness. Just the other day I had a new patient -2 years old, hasn't been diagnosed with Autism yet. After working with her for 5 minutes I was able to get this sweet little girl to sign more to request an activity. Her parents cried as she is nonverbal and has no way to communicate with them. This one session made my day and made me remember why I am a speech pathologist. I really do love my job and I love my patients. I feel very blessed that their families let me in their lives and let me enjoy them every week.

I was unexpectedly offered a position this week with an Early Childhood agency here in town. It is actually the Brighton agecny that came and saved the day for Andrew with the last 6 months before school started. It would be a full time position and the pay would be a lot more than I make now. Money is not everything to us but it could definitely help out. Please pray for us as we make a decision on what is best for our family. Our top priority is Andrew and we are thankful that his new attendant is really working out well.

1 more week until Vital Stim certifited! Can you tell I am excited??

Care hitting a record low

2009-02-05T12:13:00.000-08:00

For the first time in a while I cried today. After I picked up Andrew from school I waited for an attendant to show up to care for him so that I could get back to work. We have had the same attendant all week who has been wonderful and expected her to show up again today. Nope, didn't happen. Instead I opened the door to a 50 year old woman with no teeth, and cigarrette smoke wreaking out of the pores of her skin. No teeth, can you imagine....I mean really. She was wearing skin tight workout pants with a scrub top which didn't go well on her overweight body. I was immediately disappointed and left wondering what to do about my busy afternoon schedule. After showing her around and going over everything I sat for about 20 minutes trying to inhale a quick lunch. She was really loud and flamboyant and started apologizing to me for smelling like smoke. She said she sprayed down with Febreeze when she got out of the car. What? Is that even for your clothes? I thought it was for furniture, maybe I'm wrong. Then she tells me she lives with a 33 year old man, what??? What would a 30 year old man be doing with someone with no teeth? I know my mother is thinking right now to hold up, and be the Christian woman that I am, but folks, really? Would you leave your precious child with such a person? Once she started talking she didn't stop and our two dogs were going crazy smelling her- which they never do to people that come over. Maybe she was smoking something else.....I don't know. I quickly got in the car, saw one feeding patient and then came home. I had already called the agency to let them know that I didn't want her to return to our house again and that the cigarrette smoke was unacceptable. When I returned home she was on her cell phone talking very loud. Apparently the agency had already called her to let her know I had complained. She started again with the apologies and told me she had been smoking since she was 11 and was trying to quit. I told her "wow, yeah, that must be hard." In my head I was thinking - what 11 years old, that's like 5th grade, where was your mother and what was she smoking? And how is that my problem? ARGH!! I hope God will forgive me because I lied and told her my her patients canceled and that I was taking Andrew to the zoo. Honestly, I didn't know what to say to her. I felt so sick to my stomach leaving Andrew here with her that all I could think about was getting her out of the house very quickly. So, now that I have canceled the rest of my patients I am actively looking for that special angel to take care of our angel.

The Poll

2009-01-31T10:37:00.001-08:00

I had to add a poll to the site. My brother-in-law Gabe, is getting promoted to Major in the Air Force in March. So, we are headed to Vegas for 3 days to see him and attend the ceremony. Felt and I are going back and forth as whether or not to take our Drew-Drew. What do you think? Thanks for the opinions, we need to get our tickets soon.

A Yo-Yo of Emotions

2009-01-31T09:58:00.000-08:00

With the start of a new year Felt and I decided to change our health insurance company to a self funded plan. House bill 1919 was approved last year in Texas so that all children on the Autism Spectrum could receive speech therapy, occupational therapy, physical therapy and even applied behavioral analysis (ABA) at unlimited rate as long as you have a self funded policy. The disadvantage to doing this is that we now have an HMO. ARG! So, we have to see a PCP-primary care physician before going to any specialist and Andrew's great Pediatrican that we just found 6 months ago does not take our new insurance. It feels like we are starting all over again with looking for a doctor, one that won't hound us about vaccinations because we have chosen to no longer vaccinate him, and one that will be willing to learn about Rett Syndrome. This is not fun because I have to get someone in the next week so that we can keep our appointments at the Rett Clinic at Texas children's in February.

However, one good thing about the change in insurance is that now Andrew can get 2 hours of ABA every weekday for a year!! I can not tell you how excited we are about this. I know it will be alot for him and for us to get used to but I know that it definitely made a difference when we did this with the Early Childhood Intervention. And he we still have the same therapists that he did from before.

As for school- it seems like they are just babysitting him. I hate that! I don't get any info on what they worked on, did during the day, etc. Every day the teacher brings the kids out and tells each parent "he did good today." What? A good day to you might be a bad day to me. What is a good day, really? I was also informed this week that his aide was pulled to another room and that there will be a sub or someone else to cover until we have our next ARD in mid February. Yes, another meeting to discuss whether or not he needs an aide. I thought this was over but I guess the battle on this has just begun since the district has a hiring freeze and wants to reevaluate every 30 days . I really want someone who can be consistent with him. I think we have some ammo for the meeting in that all of his goals on the progress report stated no progress. Really, no progress? I know Andrew is a lot lower functioning than some of the other children in the class but I also know he can make progress and was making progress before he started school.

The changes in aides has also carried over to home. The person that was hired to be his attendant at home never showed up this week and he had a different person watching him everyday. I usually go to work after they arrive but it took me a lot longer this week- explaining Rett Syndrome to each person, talking about his diet, schedule, dislikes, likes, and trying to warm up and trust this person with my precious angel. It was hard. I hope things get better with this situation too, and I guess it's tough knowing that we will always have these problems.
Andrew has to be so confused and I am so thankful that Rebecca, his teacher from Early Childhood Intervention, watches him on Fridays. The moment we get to her house he is smiling. Yesterday one of her daughters asked if she could marry him. Too cute!

One more yea thing- The agency that I work for has decided to pay for Vital Stim therapy Certification for me. YEA!!!!!!!!!! I am super excited as I have wanted to do this for a long time, but it costs a lot of money. I get to travel to Dallas next month and take the 2 day course, take a test and then become certified so that I can help children with dysphagia. I know this therapy works and we got to see first hand with Andrew. I just wish it would have worked longer for him than 6 months.

Ok-enough for now we are off to have a fish fry from the 30 pounds of fish that Felt caught in the gulf a couple of weeks ago. Too bad I don't eat fish!

Pictures- FINALLY!!!!

2009-01-31T09:36:00.000-08:00

I have meant to post pictures for a while now but wasn't able to do so till today. So Voila! Here is our newest member of the family- Lucy. She is such a sweet girl and has gained 11 pounds in 3 weeks. She is getting healthy and we are soo happy to have her.

Just a shot to show you how big she really is. Sometimes we forget until we have other people over to remind us.

And here are the pictures from the Christmas Cookie Decorating Party. Can't wait for the next one!

Frustrations with sitters

2009-01-21T10:04:00.000-08:00

I am a little frustrated today. Andrew's nanny let us know a couple of weeks ago that she could no longer watch him. She was really great with him, so patient and understanding. There were so many days that we would come home and find her out on a walk with him or sitting and reading him books. I was pretty sad about this but understand. An agency here in town has been providing an attendant Monday through Thursday so I could work after he got home from school. The agency found somone to cover these hours so he would have a consistent caregiver. She started on Monday and already she has called in sick. I know we all have sick days but I don't have a good feeling about this and something tells me that this one isn't going to work out. I wish more than anything that we didn't have to deal with the agency and that we had a family member, or grandma that could watch him. He really isn't a difficult kiddo and is soo super sweet loving and funny. Lately he has been waking us up at 2 or 3 in the morning crying and screaming. I'm not sure if this is a seizure, nightmare, or if he just woke up and realized we weren't there. So every night for the past week I have gotten up and put him in our bed, and within 5 minutes he is asleep again. It sure makes it hard for both of us to get back to sleep though and I'm not sure if this is a problem behavior. He has always slept in his bed from 4 weeks old. I wonder if neurotypical three year olds do this too. Anyone???

Just Breathe

2009-01-12T18:58:00.000-08:00

When Andrew was 20 months old and we had just moved to San Antonio he was in a constant state of frustration and confusion. At that time the only things that could calm him down were music and food. There were some days of poor parenting where we did just let him eat all day. Music was and still is the number one calmer for him, and it actually lowers his heart rate. I had downloaded a song called Just Breathe by Anna Nalick before our move. I initially heard this song on Grey's Anatomy. I had no idea that during those first few months in our new home that this would be the song to keep our family dancing, and connected. In the midst of Andrew's meltdowns, which we now know was him dealing with the regression part of the syndrome, we would all stand in our office listening to this song on itunes and dancing together. It was definitely a difficult time for all of us. We knew he still needed us and loved us and knew who we were but at that time he could no longer show that. We have come to a better place of understanding now and I have no doubt that he knows who we are and that he loves us. I think this was harder for Felt to come to than me, but maybe I'm wrong. I was reminded of this song today as Andrew threw down some major tantrums because he just couldn't fall asleep. I started to sing this song in my head and just like it always worked for Andrew, it worked for me.

I was talking with some friends of ours this weekend about life's trials and challenges. I realized in talking with them that I have shared specifics on how our lives have changed but have not shared the important parts. I don't know why Andrew had to go through all of the illnesses, appointments, surgeries, tests, and now diagnosis of Rett Syndrome. However, I can say that we are better people because of all that he has been through. I think we are more patient, calm (Felt is still red headed, what can you do?) loving and have less anxiety and fear about the future. I know God has a plan in all of this and I am thankful that our faith in Him has seen us through these trials. I know my God is faithful and I truly believe that Andrew and all of the other children with Rett Syndrome will be cured one day. God is good and I can really say that even days like to day, life is good! Things haven't always been this good and during Andrew's initial diagnosis of Autism we both hit some dark places and thoughts where we could sit an entire weeknd in front of the tv and pretend to be in a different life. I am so thankful that we are on the other side of that hurdle and in some weird way I am thankful for Rett Syndrome and the way our family has grown because of it.

On another note- after lots of discussion of pros and cons we have both decided to adopt. Our daughter, yes it is a girl, is two years old and we have named her Lucy. She is a great dane and we adopted her from the Animal Care Services of San Antonio. I went to visit the dogs last weekend with a friend and you know the story- you can't go without coming home with one. She has done very well since Thursday and seems to enjoy being part of the family. When Andrew first saw her he looked at her and giggled. We have spent some time with him sitting and petting her and she is very good with him, letting him eat his meals unlike our other dog Maddie.

ARD results

2009-01-05T11:55:00.000-08:00

After tossing and turning all night, worrying about Andrew's educational placement and the thought of losing his aide, the results are in.......we get to keep his aide!!!!! This was a very quick meeting today, probably lasting a total of 20 minutes. The music therapist did not qualify him for therapy with her, which initally I was upset about, but whatever! The committee agreed to continue to provide him with an aide and review his case every 30 days to determine if still needs an aide- which he will. YEA!!!!!!!!!!!!! I was prepared for a fight but prayed for the best and I am so thankful that we came to an agreement on this one. Maybe it helped that we didn't have our sitter and had to take him to the meeting with us. He greeted everyone in the building by screaming out of frustration for having his nap cut short. It didn't help him that he woke up at 3 in the morning laughing for an hour. Thank you God for Baby Signing Time! It saved a huge meltdown by being played on Felt's phone.

Andrew's one on one aide

2009-01-04T18:48:00.000-08:00

Some of you may know that Andrew has had a one on one aide at school since he started. It is not something that we initially asked for but the school offered this at his first ARD meeting and so we happily agreed to it. This was to be provided to him for the first 30 school days, which ends tommorrow. So, tommorrow we have yet another ARD meeting, which makes it 3 meetings with the school district in a matter of 2 months of attending school. I sit here tonight feeling really anxious, and stressed about the meeting. The last two meetings went ok but this one I know is not going to go so well. I have tried not to think about this over the holidays because I knew it would make me feel this way and I would get stuck on thinking about. The school distrcit has a hiring freeze right now and I am aware that they are wanting to take away his aide. In some ways I feel like maybe he doesn't need that person as bad as another child might, maybe a child that was in a wheel chair. They also have one teacher, 2 aides and 7 children in his class for only 3 hours every morning. Does he really require an extra aide all to himself? Then I start to think about all the help he does need- help with toileting, help with walking down the hall, hand over hand assistance for most all activities, help with feeding. I wish someone could tell me how to feel about this. In some way I feel that if I don't fight for his one on one aide that I am letting him down and I have given up trying to help him. His ABA therapists say he has regressed on his goals since starting school and I know it is because the instruction he receives is not as intensive as our home program. There are so many things that I would want to change about the school situation. I also know that having worked as a speech therapist in the schools that when you complain too much no one wants to help your child. I wish that wasn't the case. Please pray that we keep our cool tommorrow and the best outcome will be given for Andrew. Oh- and pray for our sitter as she is stuck in Mexico and we have no one to watch Andrew at the moment.

Blessings

2008-12-30T19:22:00.000-08:00

Today we were blessed! Andrew started receiving respite care services through an agency here in town. At first it was a little awkward having someone come in our home and feed him, change him, and clean up after him. But, it helped me out sooo much and I was really relieved for the help. I am still working as a speech pathologist with a home health agency here in town but wasn't able to work yesterday due to sitter issues. I was able to work a little today and even run some errands while he slept at home. His attendant wanted to wash dishes and even wash his clothes. What?! What a blessing to have these services and I pray that all families in our situation will take advantage of what we all need and deserve, a little rest!
Our sweet boy is exactly that, a sweetheart. As he gets older I can see that things are going to be more difficult for myself and our family. It has become very difficult to change his diapers and even more difficult to give him a bath because he can no longer sit up for more than a minute at a time without falling backwards. He seems to be more irritable.....maybe I should put him back on the Paxil. He has already lost the use of his left hand and is starting to lose function of his right hand, which makes feeding himself a task. We end up with more food on the floor than what is actually in his belly. I could say that's why he is so thin but he eats all day. Prayers are needed! Please pray for a cure as the latest research has reversed the effects of RTT in mice-what a blessing that this has been found, and pray that I can endure some not so fun back pain.

Not feeling like Christmas

2008-12-30T12:31:00.000-08:00

Christmas has come and gone, thank goodness. We traveled to Carlsbad, NM to see Felt's grandparents and spent a couple of days in the Super 8 motel. It was really nice to see them and all of the other family members but Andrew really had a hard time. It is difficult for most children to travel during the holidays but especially difficult for Andrew. He relies on structure, and routine and is such a visual person that the traveling to a whole new environment really set him off. He did great in the car and we had lots of laughs every time we sang Jingle Bells and he would laugh out loud. Once we got to the motel and spent time with family he started to cry and whine. It seemed like this lasted for our entire stay and the only thing that made it stop was food or sleep. He did not open any gifts and someone else had to open them for him. It didn't help that the gift we ordered for him did not come in either. Enabeling Devices called 2 days before Xmas to say that the item was back ordered.....I ordered this a month before Christmas. I was pretty frusrated with the company....not like I can just go down to wally world and pick a toy up that would work for him. So, Christmas just didn't seem like Christams. I guess I can look forward to next year. I guess the best part of Christmas was coming home, opening the door to the house and seeing a big smile on his face as he looked at the Christmas tree. He was soo happy to be home and that made everything better!

Christmas celebrations and the nursing home

2008-12-18T12:23:00.001-08:00

Last weekend we had the first ever Mounce family Christmas cookie decorating party. It was lots of fun with friends, children running crazy around the house, music and a big breakfast. I was suprised at how well everything turned out considering I cooked the sugar cookies the night before and was at the store the next morning by six. Andrew didn't decorate any cookies this time but he did enjoy having everyone over and loved listening to the Christmas music. He would never have been able to tolerate this last year. Looking back he cried all throughout Christmas as he was going through the regression stage. I am very thankful for where he is at and so glad that he can enjoy all of the company because we love parties.

Tommorrow we are heading to Copperas Cove, TX to Windcrest Nursing home where Andrew will stay for 24 hours. This is for a program called Rider 28 here in Texas that was created to keep children with disabilities out of institutions. Andrew has been on a waiting list for the MDCP (medically dependent child program) program which provides respite care and other services to children with disabilities. This waitlist is several years long and in order to bypass the waitlist we are going ahead with Rider 28. We will not be leaving him there as we both plan to sleep in the room with him and set up camp- DVD, books, music and sleeping bags. Once we leave the nursing home and pay our $150 Andrew can start receiving MDCP benefits. His babystitter which we have 2 days a week will actually be paid by the program and we can also look at getting another sitter as he was approved for 54 hours of care. I don't want that much time but it would be nice to get to work a couple more hours a week and maybe have a dinner with my husband alone every once in a while. I really enjoy working only 2 days a week and spending time with him when he gets out of school. I was always working full time until this summer and I regret the time that we loss when things were so good for him. I am thankful for the Rider 28 option but I start to think about all the kiddos that we just jumped ahead of on the waitlist- and it makes me feel bad or dirty doing this. When Felt and I talked about it last night I reminded him that we always said we would do just about anything for our Drew-Drew.

Thoughts on Rett Syndrome

2008-12-15T10:48:00.000-08:00

This weekend was a fun one for us. One of my closest and dearest friends in the world came to visit with her family. On saturday morning we had a Christmas cookie decorating party here at the house. It was lots of fun and all of the kids enjoyed decorating and eating cookies and also eating a nice breakfast. They also enjoyed getting Christmas goodie gifts as they left. Andrew didn't decorate any cookies but he really enjoyed all of the people in the house and was his usual happy self. At one point my sister-in-law mentioned that he would not have been able to do this last year. Looking back last year this time, he definitely would not have been able to handle the noise or people. At his second birthday party, which only included family, he cried and screamed the entire time. He did the same last Christmas. At the time we thought he didn't like the noise and the overstimulation- now I think it was part of the regression. I think that his body and mind were changing so much that he couldn't handle what was happening around him. He went from being able to communicate, to not at all. From using his hands- barely being able to use them, and from understanding the world around him to confusion. I can't imagine how he felt everyday.
During our friends visit I got to talking with her about all of the guilt that I initially felt when we got his autism diagnosis. I felt soo guilty about giving him all of the vaccinations, guilty for the changes in childcare providers that was too frequently happening, guilty that I didn't stay at home with him, guilty for giving all of those oral steroids and breathing treatments, and guilty when I was paralyzed with grief that I couldn't even sit and read him a book or work with him. Looking back at all of the chaos I am somewhat thankful that we have a Rett Syndrome diagnosis. I feel like it erases some of the guilt in knowing that nothing I did or didn't do would have changed this course. I know that there will many difficult times ahead but I am really praying hard for a cure and I am so thankful for all the research that has been done for RTT.

Swallow study results

2008-12-11T19:48:00.000-08:00

Well, we are back to thickening up Andrew's liquids. This time to nectar consistency. I thought he was having more of a problem with solids but the speech therapist said it is with liquids again. At the first drink out of his sippee cup he aspirated(went to the lungs) and then had penetrations. Not good! I was hoping that with the Vital Stim we would have been good for a bit longer but I guess 6 months isn't too bad. The SLP also said that she would not recommend Vital Stim again and that maybe we should try something else.... I don't know what that would be, considering we having done the Beckman Oral motor program- that's when we flew to Florida over spring break and spent time with an SLP who specializes in oral motor disorders. ?? Not sure what we should do but I am frustrated at all that we have to do- the eye patching 4 hours a day to make his left eye stronger, 2 hours a day with his AFO's (ankle-foot-orthotics), potty training (what a mess), now thickening liquids and trying some oral motor exercises. AAAGH! I want so much for Christmas to special for him but I know that it will never be what we want. He may never open a gift, or have the excitement of waking up on Christmas morning and rushing to look inside his stocking or understand the meaning of Christmas. Lately I have a hard time looking for gifts for him and telling others what he would want or need. It's just hard. I feel sad and then I look at his sweet smiling face and realize there is no reason to be sad because he is always a happy little boy. Wow, he's teaching me a lot!

Swallow study

2008-12-11T10:12:00.001-08:00

We are having a swallow study today at the hospital. This is probably the 6th one that he has had done. After having 3 months of Vital Stim therapy he had one done in may of this year that cleared him for all liquids. We were soo happy and excited that Andrew could finally drink without it being thickend to honey or nectar consistency. He finally got to taste ice cream and he did like it, except it took him longer to eat. Vital Stim is where the speech pathologist put electrodes on his throat muscles and they vibrated or stimulated the muscles. It was really cool and we can say it definitely made the difference in therapy for him. He has had no problems until a month ago when he started coughing again at meal times. This time I think he might be having a problem with solids. I know with Rett Syndrome many of the girls end up of a G-tube put in due to dysphagia (swallowing disorder). I want to stay as far away from that as possible. This week he hasn't had any problems with swallowing so we havn't had to do any breathing treatments but I know we need to get it checked out. I think I still owe money to the hospital from the last visit. Yikes! I will update later when we get back.

ARDs or IEP meetings

2008-12-09T10:48:00.000-08:00

Here are the pictures from Andrew's birthday party and graduation.

Felt and Jackson take a break the in bounce house.

Grandad's chatting it up!

Everyone tasting the yummy homemade icecream

and GFCF cupcakes

This picture didn't turn out the best but he looked adorable
in the cap and gown. Now I know why kindergarden parents

go crazy over that graduation.

Well we had another ARD meeting yesterday, or as some older folks like to call it an A- R -D meeting. Andrew is now getting augmentative communication ( voiceoutput devices and equipment) and adaptive physical education (special ed P.E). I also requested a music therapy evaluation even though the special ed coordinator at the last meeting told me we could not request this until he showed no progress on goals. I told his teacher she was wrong and I could print out federal law if I needed to. I'm sure I looked like one of those crazy parents when I showed up to the meeting yesterday with a stack full of reserach articles on the role of music therapy and it's success with children with Rett Syndrome. They agreed and also agreed to finally let him where his arm immobilizer to school- at first they said we couldn't and that it was a form of restraint. It was funny to watch Felt go off " I will fight you all the way on this one" at the last meeting. He scared the teacher again yesterday by asking her where she keeps his data collection on goals and objectives and that he would like to see it. I do like his teacher but she probably hasn't done much data collection with him. I try to remind Felt that not every teacher is like our dear friend Letty- who is now fostering one of her former spec ed students. I did try to kiss up a little to the teacher by buying her the book Ten things your Student with Autism

Wishes You Knew. I know we have been a bit high maintenance but we do want the best for Andrew and we will never give up the hope that he will learn lots of things and be able to communicate with us.

Yesterday I found some old pictures of Andrew at 18 months. They were hard for me to look at. He appeared so normal- still with us, playing with toys. They were bittersweet. It is nice to remember all that he could do and that he was normal like all other children. Reality hits when I had to feed him dinner and try to teach him how to use the fork, then to bathe him while he falls backwards into the water over and over again. I love my sweet boy but he is getting harder to manage the taller and heavier he gets. My back is really killing me today.

The conference in Dallas was ok. This might sound snooty but I feel like I have learned so much in the last 2 years and really in 7 years of working with children on the spectrum that there isn't much for me to learn at a workshop. Maybe I needed to go to realize this. I did get to see some friends from the Mesquite school district - autism specialists and teachers. It was nice to hear how my former students with autism are doing- they are now in middle school. Wow! It was also good to see some other friends and their kids. Bittersweet again because Andrew is around the same age as them and what I wouldn't give to hear the words "ma ma"- he never said those but he did say "Da Da" from 9-13 months of age. Tough stuff but I try to remember my favorite verse and repeat it to myself in moments like these. Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, Plans to prosper you and not harm you, plans to give you hope and a future."

Latest

2008-12-02T12:30:00.000-08:00

What a month November was for us! Andrew celebrated his third birthday with a big party. We had lots of cake, and GFCF cupcakes and homemade icecream, and I cannot forget the bounce house. It was really awesome and so big that it took my nephew 2 hours to warm up to get in. We felt really blessed to have our friends and family all there to celebrate with us. I think my favorite part was watching all of the kids lined up in the yard waiting for their turn to hit the huge pinata that Felt's secretary bought. We played a game hours later to see who could clean up the most trash in the yard- the fullest bag won a prize. What a great idea!? Andrew has now been in school for several weeks and seems to be doing well. He loves to look at all the decorations in the hall as we walk with his aide to the classroom. Since starting school he seems to want to be with the group- family or peers more. He doesn't like to be left alone and seeks to find us when we are in another room. What a blessing! I know Thanksgiving was last week but I am so thankful for this happy little boy and everything that he teaches us daily. He really is our little Angel. I will post more pictures later when I can fix our computer but here is a picture of him in his Halloween costume. He really loved trick-or-treating with Manny, Dad and I. And he definitely did not complain when Nonnie gave him his very own GFCF treat bag that night. Pray for us as I am traveling to Dallas this week for the state autism conference and Andrew heads to his grandparents to visit.

The Past 10 months

2008-10-29T20:23:00.001-07:00

It has been a long time since I have last posted. I have lots of reasons why I stopped but mainly I was drained from everything and needed some time to not have to write about all of the craziness in our lives.

Since January we hired and lost a nanny and hired a new one who is working out great. She is so mature and calm and takes initiative with Andrew. So many times I have stopped by during the day to see her out on a walk with him or playing with him, rocking him. It really gives me peace of mind. We also filed a complaint with state regarding Easter Seals ECI services. After fighting for 3 months with Easter Seals and writing a really compelling letter about how they violated Andrew's rights the state gave us the ability to change services to Brighton ECI. I could write a book on all of the horrible things that were said to me, to our nanny and the really awful things that Easter Seals did. Even my happy pill at night could not make this situation better. In the end I still want their agency closed down and I wish I had pursued a law suit so that they may never do what they did to another child or family. Brighton on the other hand has been a complete oppossite. They are wonderful and I could not have asked for better services for him. He has been getting 20 hours of therapy a week from them, which included ABA, speech, OT and PT. They also sent out our angel Rebecca, his teacher, for an hour and half a day to work with him. And they really did work with him. They have all put in so many hours and hard work and I am so thankful for all that they have done for Andrew.

During our transition to agencies a therapist had suggested that Andrew might have Rett Syndrome. I started to read more about this and knew that this is what he had. After aptmts with our local neurologist who was not buying it, I scheduled an aptmt at the BlueBird Rett Clinic in Houston. His therapists were really working their tails off and Andrew was still not making much improvement and was starting new things like holding his breath over and over and hyperventilating. He was still falling down all the time and Felt had to make him a ramp to walk in and out of the play room. When we took him to Texas Childrens the doctors were questioning or reasoning for bringing him. This is because Rett Syndrome is primarily in girls. After watching him for 2 hours they said they had never seen a boy so much like all the girls and they wanted further genetic testing to see if he had a MECP2 gene mutation. Within a couple of months they called to say that he did have a duplication of the gene and that he has 2 X chromosomes in his body. Boys have XY and girls have XX. Andrew has XXY. The neurologist was hesitant on making a diagnosis being his age and male status but called a couple of weeks later to tell me that does indeed have Rett Syndrome, the most severe form of Autism, and a degenerative condition. While we are thankful for an answer as to why he has struggled so much we find it hard to think about the future. Just when we were dealing with Autism we start to think that Andrew will lose his ability to walk, lose all purposeful hand use, possibly need a feeding tube in the future and lose his ability to sit up. This is very hard to think about and I am reminded by those around me to take it one day at a time. We start to grieve again as we feel Andrew's body and mind slip further into the syndrome. We are also dealing with a lot of anger and frustration. We were fighting so hard to cure what we thought was just another form of Autism- through diet, shots, supplement, vitamins,. I can't tell you how much money we spent on trying to cure what you can't cure. I think about Andrew crying in the morning while I poked him in his toosh with an MB12 shot. What a waste of my time and for what?

Andrew's last day with Brighton ECI services is tommorrow. I am very sad about this. Although Andrew hasn't made huge leaps of progress, every therapist has been part of a team holding Andrew and our family up in support. He has gained some new skills- turning the pages in a book, using fork with help to eat, using communication devices, taking puzzle pieces out and learning to put them in. This is what early intervention should look like for a child and I just wish any child with Autism could get this level of care.

Andrew turns 3 on Sunday and we will have a party for him on Saturday afternoon. It will be Zoo themed because our life is always a little crazy and wild like the zoo. I am planning on making a cake and cupcakes- not sure how it will turn out considering my practice last weekend was awful. I should have signed up for cake classes. Oh well. At least I try.

Next week Andrew starts school down the street in a special education self contained classroom. After arguing with the district in an ARD meeting Andrew will have a teachers aide all to himself for the first 30 days. We will then have another meeting to see if he continues to need this, which he will. We both have a lot of anxiety about him going to school. Even though it is only half the day- I feel like I have no control over the situation and I am just sad that our time at home in the morning is forever gone. I don't think I would ever be ready for him to start school. After observing the class the most I see he will get out of the setting is socialization. Pray for me that this will work out ok and that he will learn something. Not even a cute backpack or new cute outfits could make me excited about this.

I will try to update more often as I am not working full time anymore. Thank you God for that one! I can finally wash clothes and fold them and even put them up! Wow!

Feeling Overwhelmed

2008-01-19T17:15:00.000-08:00

I sit here tonight feeling really overwhelmed. Feelings, of sadness, guilt, frustration and depression surround me and I know it has to get better. Andrew is running around in circles banging on the desk, staring at the monitor, banging some more on the blinds and giving screeches to ask for itunes. It's the same thing everyday and nothing seems to change. I believe kids with Autism have better chances of recovery than ever before but the puzzle to Andrew's autism seems to be a really difficult one. I worry over everything. I worry that we aren't doing his diet the right way. I worry that he has food allergies that we aren't aware of besides issues with gluten and cassin. I worry that we should already have him on digestive enzymes- but worry that maybe he isn't suppossed to take those with the probiotics he is already taking. I worry that his gut isn't healing like it needs to be and that we will start chelation to early to work for him. I worry that if we don't get a hard chamber hyper baric oxygen chamber that it will be money wasted and we won't see changes. I worry that more applicants for the nanny position will be no shows like the three that were scheduled for interviews today. I worry that Andrew will never talk, and I worry that his life will never be productive like ours. These are just the thoughts that wake me up at 2am and are controlling my day. I need really need to let go of things and let God do his work.

Chelation or HBOT (Hyper Baric Oxygen Treatment)

2008-01-14T18:29:00.000-08:00

This is the question that was posed to Felt and I at our last appointment in Austin last week. Chelation is a very contraversial treatment conducted to remove metals out of ones body while Hyper Baric Oxygen Treatments are also very contraversial. It is where you are put into a chamber and 100% oxygen is breathed in allowing to heal the muscles, brain, etc. Both are very costly so we are trying to prioritze what is best at this time for Andrew.
We got results back from the lab in France stating that Andrew has high levels of porpherine- mercury. Don't know where this would come from-maybe vaccinations....hmmmmmm. Makes you wonder! I know a lot of people say that there isn't mercury or thimerosol in vaccinations anymore but until you have read Evidence of Harm and done some research- well, then you will understand that that isn't the truth. It's sad but one day we will have answers and I think those conclusions will be what parents have said all along.
We are leaning more toward HBOT because it is possible due to Andrew's extreme muscle weakness that he has had a stroke. Maybe in utero or after. This would explain his left sided weakness and ptosis of his left eye. Dr. Jepson said that studies have revealed progress with neurologically impaired children doing these dives. It would require 40 dives- Monday-Friday with one hour a day. We plan on doing these treatments after we go through a couple of weeks of his B12 shots and Glutathione cream( another new supplement). I haven't given a shot to him yet and have made Felt do it. I'm too scared and worried about getting the muscle of his tooshi instead of the fat.
Sadly this is Andrew's last week of ABA at the Treehouse and his last week at daycare. After last weeks appointment Felt and I realized that we cannot afford $1000 a month out of pocket for 3 hours a week of ABA. I probably have gotten more than Andrew out of this by talking with the other moms. It has been so empowering and therapeutic for me. I will always treasure the way those women opened up to me and encouraged me and the positive thinking they brought in dealing with this diagnosis. It has meant so much to me to have them to talk to about doctors, what others say, progress, biomedical interventions, and family issues.
When I picked up Andrew on Thursday afternoon frantic and rushing to get to his Vital stim therapy I noticed a note on his cubby. It said "Andrew will be moved up to the next class 1/21/2008. " I looked at his teacher and she said she had just noticed the note. I was almost in tears as I raced out of there almost late for therapy. I had talked the director back in November and was assured that he would stay in this class. After asking her to write a statement that her staff would not be able to provide one on one instruction - to present in our defense against Easter Seals and being turned down, I should have known that they wanted him gone. I was upset by this but felt and still feel very strongly that I do not want him to be in a facility or place where he is not wanted. I gave them a weeks notice and pray tonight that God will send us an angel to take care of him here at home. It will be costly but I think he will benefit more in the long run and it could also relieve Dandy(my dad) of his biweekly therapy drives.
Andrew is doing well and remains a fighter through all of this. I have taken bannanas away from him over the past month, fearing that they were cause of digestion and hyperactivity. They were one of his favorite foods. This past Sunday he was running around the house - his aimless walk and I said "Andrew do you want a bannana?" My first thought was that he wouldn't understand what I was saying. The next thing I knew he walked to me in the kitchen signing please and laughing. He knew what I was saying and he had not forgotten about those bannanas. I couldn't help but to give him half of one.
Felt and I have had our ups and downs lately. Sometimes we feel so overwhelmed by life that we just sit and stare at the tv on the weekends or at night. We have neglected some friends and family by not returing calls and we hope everyone will understand. Felt said the other night "I am so sick of everything revolving around Autism." We aren't sick of our Drew but definitely sick of him being sick.

Happy New Year!

2008-01-01T19:27:00.000-08:00

Missing PiecesMark Leland /Tim CalhounMallory Records/Nashvillecopyright 2005

It was a mid December evening,in a room of heavy breathing,
When I looked into my little baby's eyes,
And like the ships that sail the ocean,he had captured my emotions,
and wrapped them up just like a giftat Christmas time,
I thanked the Lord above that he was mine,
I prayed to God that everything was fine,.

And after months we saw him changing,
Nathaniel's speech was rearranging,
So we took him back to see what they could find,
And after ironing out the creases,
They came up with missing pieces,
And they told us that autism's on the rise,
I looked into my little baby's eyes,I
promised him to find the reasons why,

Now I lay him down to sleepI pray the Lord my son could speak,
And make him strong,
where he is weak,
This I ask of You..And just like him,
there's many more,
That need our help to win this war,
Cause who knows what might lay in store,
To help them make it through.

The doctor says, there's so much more to do,
to put the pieces back together,
but it's up to me and you

So now we lay them down to sleep
And pray the Lord they all could speak,
Please make them strong, where they are weak,
This we ask of You..
Cause now we know there's so many more,
That need our help to win this war,
And who knows what might lay in store,
To help them make it through.
Yes, who knows what might lay in store,
The missing piece is me and you...

I found this on one of my emails and it really brought tears to my eyes. Every night I put Andrew down and pray with him that God will make him stronger and will help him to talk. Looking at him lying in bed his little body is so sweet and innocent. Yet I feel so angry looking at him because our family was robbed and it feels like someone took our precious Drew and left only bits and pieces of him. We know God has a plan in this and we continue to pray that God will heal our boy. Somewhere I read that this battle is not a sprint, instead a marathon. We will continue to fight hard!

The Babbling Continues!!!!!

2007-12-30T10:48:00.000-08:00

Wow! What an exciting morning! Andrew woke up this morning and has continued to babble "dadadadad-duh-duh-duh." I know it may seem silly to some other people but this was so awesome for us. Felt and I imitated him over and over again and watched with excitement. We sat with him in bed and played with him. His attention and eye contact were even better this morning. We called his name and he would turn his face to us. It was really neat to see this and it really brings more hope and faith to us. God has blessed us today! I'm not sure if it is the diet starting to work or the supplements including the probiotics. On days like this you feel like you have to take advantage of every moment and cancel all plans to attend church( bad, bad, bad), wash clothes, grocery shop, etc. Please pray that this spurt of language and communication will continue for Andrew. Thank you God for blessing us today!

Looking forward

2007-12-29T15:56:00.000-08:00

One of my last posts I wrote about looking back and it is something that Felt and I do a lot these days. Tonight I am looking forward. I know that with everything we are trying Andrew will get better. There will be a day when he doesn't just cry out of pain. There will be a day when he can say 'mama'. And there will be a day when we can play a simple game with him. I really look forward to these days and I am so thankful for the sweet moments of laughter that we get with him that come every once in a while.
We had the Mounce family visit us for 5 days and it was really nice to have all the extra hands to help with our drew-drew. It was also hard to see all of their faces as they realize how much regression has occurred with him. It was nice that his aunt Stacey is on a somewhat similar diet and was really helpful by cooking up some gluten and cassen free stuff. Andrew did really well on Xmas morning and sat in my lap and allowed hand over hand assistance as we pulled lots of sensory toys out of his stocking. He was really spoiled this Christmas and I guess the big gift was a small trampoline that has a hold-on bar for him to jump on. Although he can't jump it is something we are working on, and he smiles so big as we sing 'no more monkeys jumping on the bed.' His aunt Stacey and I took him to a new neurologist to get results of the past EEG and to get a second opinion. This neurologist didn't give us a lot of info but did say that he had abnormalities on the 23 hour video eeg. Abnormalities doesn't really mean seizures so I am skeptical about the prescription that he wrote out for anti-seizure meds. I need to do more research. We were also told that there is a 50/50 chance of him making progress on these meds. I'll take a 50 percent chance but I need to hear from the Thoughtfulhouse first.
Before the holidays Felt and I met with the speech therapist from Easter Seals. She actually stayed at our house for 4 hours. He is only 2 and we haven't even gotten to the schools yet. I can't imagine how long our ARDs are going to be but I feel bad for whatever school and teacher gets us. It seemed like forever but after making a phone call outside she came back and accepted all 30 goals that we had written for Andrew that were broken down into different developmental levels such as gross motor and visual discrimination. I formulated these goals based on two different developmental assessments that I have- the Brigance and the ABBLs. I was very proud of Felt for arguing with our once nice therapist and for really being involved and advocating for Andrew. Felt and I believe that she was told on the phone to wear us down so that we couldn't get to intensity and frequency- hours because it was 7:15 when she left and that was 45 minutes past Andrew's dinner so naturally he was upset that his routine was off. We did agree to increase his time from 90 minutes a week to 3 hours of therapy a week which includes 2-45 minute speech sessions and 2-45 teacher sessions. She told us that we would never get therapy everyday even if that's what we wanted. Some funny moments of that meeting was that when she first sat down she started to tell us about this parent education program called Hanen- more than words, and how great the book was. I looked right at her and told her that I was certified in the program. Ha! Ha! She was suprised and I thought it was funny how I really am their worst nightmare, in a way. Before she left I told her that we would be meeting again because although she had accepted his 30 goals there would be no way he could attain all of those in 3 hours a week of therapy. I think she was really the worn down. Felt and her argued pretty bad at one point and it was amazing to see that after she accepted Andrew's new goals how Felt was extra friendly to her. He was even showing her our Autism ornament. What?!?
One of the best gifts that I got this year was the Jenny McCarthy book Louder than Words. It is so good and in one day I am almost finished. She is definitely a hero for us moms out there and I am so thankful for her celebrity status and position to help cure our kids. She talks a lot about the diet, supplements and her sons story. I feel like we are on the right track but I know we have some important steps to get where Andrew needs to be. I will be working for a home health company slowly taking on kids after school and hope that by March 1st I will be able to quit the schools and take him out of daycare. I pray that this plan will work.
One neat thing- I had been reading that when autistic kids get fevers that their language improves. Last night Andrew was in pain- crying and did have a fever. He babbled more last night and today than he has in 6 months. I pray that even if his fever is gone and the pain is gone that he will still babble and that this babbling will progress to words again. I know this may not happen but I pray that it will so that I can give God the glory. I will keep the faith and I know that our God can do all things when we ask.

Done with Doctors

2007-12-18T17:43:00.000-08:00

After a several days of hospitals vistis I can say that I am done with Doctors all together. Andrew's tonsillectomy went ok. My dad and I had to hold him down as he was fighting us coming off the anesthesia, but with morphine he calmed down. That hospital stay was weird. We had to share a room with another little girl that had the same surgery performed. It was quite fun trying to eat my dinner Friday night and listening to her vomit all over the room after eating chocolate pudding. After being woken up by her whining I vowed to my mother that
I would never have a daughter. It was really bad and her whole family slept in the room that night. Andrew ended up staying a little longer because his oxygen count was low during the night. I will never forget being woken up by a large nurse at 11 pm telling me to wake Andrew up so that he could take his antibiotics. She said it was the only way he could get better. I went off on her and told her it was one of the reasons that he is autistic and to not ever say that to me again. Wow! One neat thing was that while we were getting him ready for surgery the admitting nurse let us know that her 5 year old son has autism and that she too takes him to Treehouse Pediatrics. In fact his son has the same ABA (applied behavioral analysis) therapist. She was so sweet and I thought that was cool.
I took Andrew yesterday to Methodist Childrens for his 24 hour video EEG. It was an interesting experience. After getting there at 8:30 the assigned time, they did not put electrodes on him till 1:30 in the afternoon. What? We were a little frustrated by how slow things were especially knowing that he had missed therapy yesterday morning. The thing that was hard for him was sitting in the bed the entire time. He could not stand, get up and could barely move around for 24 hours. There are not enough videos for that. We were on the hematology and oncology floor so we got special treatment from their nurses as their patients usually stay for several months. When we got home today I called the neurologist to see when we would get results and I was told that I had to schedule an appointment for that. The earliest aptmt is Feb. 21st. Can you believe that? Even after I explained that we were trying to make sure he was not having seizures this was the earliest time they could get us in. Felt says he will call to complain in the morning but more than likely we will have to find another neurologist that can read the results. I am sooo done with doctors offices.
I guess I need to go and take my chill out medicine for the night. I am just realizing how hard it is to manage all of this and I wish there was a way that I could stay at home with him. We are very blessed though I know that Andrew is such a special boy and I feel very lucky to be his mom. Even with all of his challenges he has special gifts to show all of us everyday.

One Day at a Time

2007-12-14T04:19:00.000-08:00

Things have been really crazy for us this week. It is always a busy time for everyone before Christmas but Andrew is definitely keeping us extra busy. Last week we had to do a urine sample to be shipped to France. We got that taken care of but it took us sending it through DHL. The people at the Post Office said it was a biohazard and could not send it. We attempted to do a chelation trial this week with a 6 hour urine sample before and a 6 hour urine sample after the suppository. That was a waste of time because even though Dandy (my dad) stayed home with Andrew, the urine collection bags kept coming off and leaking out into his diaper. What a pain! Finally we called the Thoughtful House and told them it wasn't going to happen. I requested a meeting with Easter Seals (our Early Childhood Intervention) about 2 weeks ago. After making repeated phone calls to his speech therapist and finally calling the executive director to complain I received a returned phone call on this. I told her we want to make changes to his goals, add goals and make them measurable. Really we want 20 hours a week of therapy for him and we will not stop until we can get this. This is a time that we should be taking advantage of and I feel like they are not willing and do not want to really provide early intervention for him. I went to the daycare to see if I could get a statement from the director saying that her staff was not responsible for 1:1 therapy and instruction for Andrew, but she would not do it. Oh well, at least I tried. I was so frustrated with her that I even mentioned advocates and attorneys. ?!? What was I thinking. After talking with Andrew's Speech Therapist this week I realize she thinks he is more Mentally Retarded than autisic and says that he needs to work on interacting and engaging more than developmental skills like putting things in and taking things out. So I am preparing for a big battle, printing out resources and info and I ordered the Brigance assessment and have been writing my own goals for him that will be measurable. My anxiety has been at an all time high about this, but in ten years I won't know this woman and nothing will matter except what I have done for Andrew. In the mean time I have had to order protein powder, and protein bars for Andrew because he has become such a behavioral eater that he only wants crunchy stuff. What a pain!
Today is a big day because he is having surgery- tonsillectomy and adenoids removed. He will stay over night and then it is back to the hospital on Monday for a 24 hour EEG to see if he is having seizures. It's sad but Felt and I would almost be happy if we knew he was having them because there is medicine for that and we are so frustrated with the lack of progress he is making. Please pray for us and pray that God will give Andrew a speedy recovery.

Looking Back

2007-12-03T18:22:00.000-08:00

I don't know if this is healthy or not but I often find myself looking back at all of the things that Andrew used to do. It reminds me that he isn't the same little boy that he was a year ago and it helps drive the force to fight for him in getting treatments, therapy and looking for an answer. He did have words- Dada was his favorite and he would shout it and he would call me dada as well. He has always loved bananas and would say 'nana' to request one. I remember several times that he said 'addie' for our dog Maddie. He also said 'bye' bye' and would wave bye bye to the bath water at night. He said 'bu,bu' for balls and for bubbles. He would sit on Felt's lap and clap his hands to the song If you're happy and you know it clap your hands. He loved to look at books and I can remember several times finding him in his room sitting on the floor and looking at books. He also loved balls and he would throw them around the house, run and chase them. When I would pick him up from daycare he would get so excited to see me that he would cry and cry until I held him in my arms. We would sit on the bed on Saturday mornings and take a nap together and laugh, and make sounds.
For Andrew things started to slowly slip away starting at a year. The words went away first and I remember telling Felt last Christmas that I was really worried and I did not want to go anywhere for the holidays. I could see the red flags go up. After getting PE tubes in his ears he still did not get speech back and that really concerned me. Then he started walking at 15 mos, and a month later he was into walking around the house staring at the smoke alarm lights. We thought it was cute but kinda strange. He would also walk to our back door and stare at he crack between the door and the wall- now this definitely sent off red flags and again Felt would respond to my fears by saying 'I don't know' and 'he's just behind.' I knew things weren't right but I wanted to believe what everyone else was saying. At 18 mos my dad called and said he needed to be evaluated for Autism- this was during the time we were trying to sell the house, look for jobs in San Antonio and think about getting a new house. I was so stressed and upset that my Dad thought that he had this. I kept trying to explain to my Dad what a developmental delay was, but in my head knowing that it was really possible.
I wish I had known that this would have been the road we would head down. I wish that during the time Andrew was so sick and on constant breathing treatments that I would have quit work, stayed home with him and enjoyed the time that we could engage and enjoy eachother. I still enjoy Andrew but it is very hard for him to enjoy being with us. He can't wave, speak, imitate any gestures, clap, use a fork or spoon. He is constantly displaying stimming behaviors and he appears empty and disengaged the majority of the time. If we let him he would walk around on his tip toes aimlessly around the house, pulling on his fingers and humming. Felt and I call it the autistic hum because you can hear the autistic kids get out of their cars at therapy. It's the same hum. He is unable to turn the pages in the book and has no fine motor skills to play with any of the old toys that he once enjoyed. He is at the point where can't even sit in a chair without sliding out. He has such low tone now. His swallowing has gotten worse and now he only uses the front teeth to chew and then chokes himself because he can't get the food down. Scary! It's hard to think about all of this but I find myself telling more and more people his story and maybe it's therapeutic.
He now has a weighted blanket and it has worked well for him. It's sad but he can't even get up if it is on him- that's how little strength he has. And the blanket is not that heavy. He is really into music lately and stands over the computer crying until he hears the song Breathe by Anna Nalick. Crazy kid!! He even cries when the song is coming to an end. He also loves the Beattles and he likes Jazz music. Now if I could get him to like Country.

Thoughtful House Visit

2007-11-20T06:39:00.000-08:00

We had our first visit to the Thoughtful House last Friday. It was really a good visit and we are definitely impressed. Dr. Jepson was able to talk extensivly about the biological aspects of children with Autism. Based on the results of stool and urine samples from Andrew, he has low Zinc and B12 levels. He does not have a high yeast or bacteria count but these kiddos bodies are unable to get rid of yeast and bacteria the way our bodies do so that could be problematic for him. They also have problems with their enzymes. A lot of the stuff that was said is way over my heads and I am thankful that Felt was able to understand some of it. The result is that we have increased his supplements, and he now gets a calcium supplement. We will be looking for a protein powder to supplement since he is having difficulty eating meats except bacon. He will be on a antibiotic followed by a round of antifungals (diflucan) to kill of yeast. Oh- and he will have a one day chelation trial (very scary) followed by a 6 hour urine sample (what fun!) to be shipped to a lab in France for testing. Can you believe that? That's the craziest part of it. I am just pleased that we have finally found someone who knows more than us on Autism. That afternoon Andrew received his Autism diagnosis from the CARD (center for Autism and Related Disorders) program. Not sure if this was worth all the money but they did spend aproximately an hour and a half with us.

Now we have to think about where we go with all of this. Andrew needs more therapy and they recommended 20 hours a week. It's very costly and Felt has talked about pushing our ECI for more free hours which will mean confrontations and arguments......something I don't look forward to. Pray for us that somehow we will be able to get him what he needs. I know God will provide and things will work out. I am confident of this. Look how great day care turned out for us and I was really doubtful.

Yesterday I took Andrew to the ENT (ear nose and throat) doctor and they want to do a tonsillectomy and removal of his adenoids. Hopefully this will help him sleep better, stop the snorning and even help his ears and development. It does require a hospital stay so I will have to schedule that today.

Results of his MRI last week look good but with Dr. Jepson's encouragement we are thinking of having the 24 hour EEG just to make sure that there is no seizure activity. That ought to be loads of fun considering the first two were so difficult and they were only a hour and a half long.

In all of this we are trying to keep things normal and look forward to the Thanksgiving break where we plan to go to Carlsbad, NM to visit grandparents. This will only happen if Felt can fix my car- it is really messed up.

One more thing!

2007-11-13T18:16:00.001-08:00

Just wanted to share that Andrew was on the 10 O'Clock news Sat. night on CBS- Austin. My parents and I took him to the Autism Walk at the Dell Diamond that morning and pulled him around in his red wagon. How could someone not put him on the news? He was too cute and enjoyed the country band that played there. It was really good to see other families, and get resources. Oh- and he got an autographed picture of a guy named Jessie that is on the show Friday Night Lights. Kinda cool!

2007-11-13T16:21:00.000-08:00

Andrew at the birthday party enjoying all of the attention!

Roar!

Just had to include a picture of the awesome cake! Didn't I do a good job?

Andrew Turns 2

2007-11-07T18:24:00.000-08:00

Andrew turned 2 Nov. the 2nd.. It was a special day for all of us but also hard as well. For so long I held on to the fact that he wasn't 2 yet, and that he would hopefully start to talk before he turned 2. When I sang happy birthday to him that morning he smiled and looked around very excited to see the house full of streamers and birthday banners. We had a small birthday party for him on Saturday with family and he seemed to enjoy the day especially the cake. I made him a chocolate gluten and cassen free cake with the encouragement of my mother-in-law and it actually turned out ok. After eating a whole piece Andrew could not go to sleep that night and woke up the next morning at five acting like he was on speed. It was really wild and definitely shows us that so much of what goes on with these kids depends on diet and nutrition. It was really nice to have family around to celebrate the day.

Andrew has been doing better with all of the therapy. He is starting to enjoy the brushing protocol that the occupational therapist recommended and is learning to request music by signing for Itunes. He now stands at the computer and trys to move the mouse to get music to play. Right now he is really into Jazz and loves the Sleepless in Seattle CD. I continue to enjoy meeting with other parents and talking to them at therapy. It is really comforting to hear their stories and gives me assurance that we are making the right choices.

We have lots of upcoming apptmts. Tommorrow he has an MRI early in the morning and on Friday we go to the Thoughtful House to meet with Dr. Jepson and Scott Allen (flying in from

California) who will also complete a diagnostic battery. It was hard to fill out 20 pages on behavior and developmental questions because so many of my answers were 'no he doesn't do that yet, but he did at one time.' Hard stuff to think about! We keep calling this our $1,000 dollar day because it will cost close to that. Please pray for us and pray that God will continue to provide financially for us. No, I am not asking anyone for money and we are not in need of any. We think that things will work out for us, but we can't imagine how parents with more than one child afford all of this. Please pray for Andrew that he will cooperate and that we will get our money's worth. We are excited and a little nervous and know that God continues to bless us in this situation. Sometimes I hear myself singing Kanye West's song "that-that don't kill me can only make me stronger." Crazy I know because I can not stand Kanye after his whole George Bush hates black people statement. What a loser!

On another note Andrew is now having difficulty with sleeping. At daycare he doesn't nap anymore and laughs while running around the other children. At night he is waking up at 9:00 and laughing, flapping his arms and legs until after midnight to wake up at 5:30 the next morning doing the same thing. It frustrates me because nothing seems to calm his brain back down. I really wonder what is going on in there because he has been the best sleeper since he was 6 weeks old. I have never had problems with this before. It scares me in the sense that I'm afraid he will wake up fall off the bed and hurt himself while we are asleep. Better get those baby monitors back out! The other day while trying to nap he stood up leaned over the rail and fell head first into his trash can. He was actually stuck crying when I ran in. It was the craziest scene. I have ordered him a weighted blanket so hopefully that will help but who knows how long this could last. I am thinking about supplementing with Melatonin but I'm afraid that he will become attached to it and always require this. ???? Any suggestions?

Well, I have finally posted and even learned how to get the pictures put in. YEA for me! The first was his lion costume on Halloween. He was soo cute and actually had fun being pulled around and made to trick-or-treat. We had him sign please and at this age no one expects the kids to say 'trick-or-treat' so it worked out ok. He wasn't able to eat the candy but one of the daycare teachers bought him gluten free candy so he had some of that when he got home. The other pictures- him at the pumpkin patch and then the birthday cake ofcourse. He was scared we would take it away. Enjoy!

Therapy World

2007-10-22T16:27:00.000-07:00

Although I have already joined the "therapy world" as a profession, Andrew and all the other family members are joining as well. I now take Andrew to ABA therapy 2X week and my dad takes him on Tues/ Thursday's to Speech and OT at Warm Springs. Wow is Andrew keeping Dad young! Since we moved here he has lost 35 pounds. I am really thankful that I am able to take him to some of his therapy and I am so grateful for Dad's help. I am able to sit and reflect on things, talk to other parents of kids on the spectrum and see other boys his age and older dealing with the same issues. It is tough to see boys 4 and 5 years old with no words and 1 sign and I pray that God will bless Andrew by giving him more language. Last Friday he had a really good day. His Speech Therapist called to tell me that he was imitating a sign that she had done in therapy. I had taken him to my brother and sister -n-laws house and my brother was able to see some great joint attention- looking at Elmo, back at Uncle Cas and then back at Elmo and signing please. Even Felt noticed better eye contact with Andrew. All seemed to go well until Andrew got a little too excited and fell scraping his nose on the bed rail. He is now getting the shock and awe looks everywhere we go. As I sat waiting for Andrew in therapy today I realized that through the years of my work with children with Autism and my level of interest that somehow God had prepared me for this journey. All the time that I spent making materials for children, attending workshops that were never needed for the schools but that pertained to Autism........God was preparing me mentally and emotionally. He gave me a compassion and understanding for these children and prepared my heart. I remember talking to a girlfriend once when I was pregnant, telling her that it would be the worst thing to have an autistic child. Well it's not! It's not a road I would ever choose to travel, but we will fight the good fight and do everything in our power to help Andrew. It's hard for me to realize that God has a plan in this and that someday it will be revealed. I just wish it was on my time and I wish that someone would be able to tell me if we are doing all the right things.

Hope

2007-10-12T16:19:00.000-07:00

Everyday we hear more recovery stories from parents of children with Autism. It really provides hope for Andrew. Every now and then we get small glimpses of his true personality. Lately I have been bringing him home after school and putting him in bed and reading to him. Sometimes he listens while sucking on his pacifier and holding his blankey, and other times he looks around humming. I started to read the No David book to him yesterday. He laughed at each page, looking at the pictures, and really waiting for the next page. It is a cute book if you have never read it. Each page "No, David don't play with your food!", Andrew would laugh histerically. It really made me happy to see that I could engage with him. I read it several times and then Felt came home and read it to him. Each time he would look, listen and laugh as we read the line on each page. This is huge for him because I haven't been able to get him to attend to a book since May. Today at daycare he fell and hit his head on the corner of the window seal. On the way home he was still fussy and in pain. At one of the stoplights I turned around to him and said "No David, go to your room!" He busted out laughing, then crying again till I said another No David line from the book. Tonight as I sat in his bed getting him ready to sleep I told him to give Pooh a kiss. After I leaned over and kissed Pooh, he followed and kissed Pooh. It could have been accidental but I like to believe that he understood what I was asking him to do. These little moments are huge for us and really give me hope that Andrew will recover lost skills.

Updates

2007-10-10T17:30:00.000-07:00

My dad and I took Andrew to the EEG Monday night. By the grace of God it was completed and we should get results soon. We hope and pray that he is not having any seizures. The experience was pretty hard. He had 27 electrodes attached to his head and a net to keep them on. He was suppossed to go to sleep but instead decided to tried to pull of the electrodes. I had to hold him down while he was screaming until he fell asleep. Not fun! It was definitely hard for Dandy (my dad). I called to see when we get results and they will not give them to us until we schedule an aptmt. Can you believe the run around we get? Easter Seals seems to be giving me a hard time too. At first they wanted to offer us a different OT and now they are sayng that they do not duplicate services so they would discontinue services from them. I feel torn with so many different options, weighing them, insurance, co-pays, ......once again making me stressed and crazy. I feel like I am constantly analyzing and wondering if I am making the right decisions for him. It's hard! I wish there was a clear answer. I have thought about contacting an advocate. Maybe someone who could give me more insight on Easter Seals and what they are suppossed to provide by law. I am praying for the best therapists who have a desire to help him. Wow-this situation is so much bigger than us.
A couple of things that have changed with Drew-Drew lately are his picky eating habbits. We noticed this about a month after the GFCF diet change. He hates red pasta's, but will eat tomatoes. He also cries now when he falls, most of the time. This was hard in the past because we knew he fell hard enough that he bruised but wouldn't cry at all. Scary! We are looking forward to more changes with him.
Please pray for us as we try to make the right decisions and are constantly worried that we have made the wrong ones.

Making me CRAZY!

2007-10-06T15:11:00.000-07:00

That's really how I feel lately. All these appointments and phone calls, expenses, messages, tests,bills.......I feel like I am going to go crazy! We were called several weeks ago about the EEG results. There was a faulty electrode resulting in the need for a do over. My dad and I went on Friday for the test but after sitting for 15 minutes were told that the computers were down, so here we are again with no results and I am waiting to take him at 6:45 tonight. He had an ABA evaluation Friday and will receive 3 hours a week of this therapy starting next week. I took him to Warm Springs rehab today for OT (occupational therapy) and Speech evaluations. It was a long visit but they were thorough and I felt like they knew what they were doing. It was hard to hear from the OT therapist that he is one of the worst cases that she has ever worked with, considering she looks late 40's. I knew he was low but it's hard to hear from other people. She was very positive though and excited to work with him. Speech was ok but she told me that if he wasn't able to focus or attend (which he can't for even 3 minutes) she wouldn't be able to help him with language acquisition. I know this too being a therapist, but again hard to hear. I just can't let everyone give up on him. He's not 2 years old yet, and we can't give up the fight this early. I tell myself this but it's honestly hard to keep fighting when I see no improvements and just more regression. I sat in the lobby waiting for the evaluations and the receptionist pointed out some toys he might play with. I couldn't tell her- he doesn't play with toys. No one seems to understand and instead people just seem to stare. The constant humming, flapping arms, walking on toes, falling face first to the ground, disinterest in toys or people, blinking eyes.....it's hard no to be anything but depressed. How did we get this far regressed? Why Andrew? It makes me cry just thinking about it. So, I'll stop. On another note- we had our aptmt with the Thoughtful House nutritionist. It was awesome- she was great and recommended lots of tests, and diet information and an aptmt with ..... Dr. JEPSON. YEA!!! We thought we would have to beg to get in to him but we see him Nov. 16th. I just pray that we can seem some skills recovered, I pray for our Andrew that he will be able to have a meaningful life. Please pray for us as we get more and more stressed, frustrated with eachother, the situation. Please pray for Andrew that God will give him skills, keep him safe. The OT did recommend him wearing a helmet, as hard as this was to hear- I know he needs it. I wouldn't be suprised if he already has a TBI (traumatic brain injury). Please pray for answers for us.

Encouragement and Support

2007-09-30T09:20:00.000-07:00

This weekend we have been feeling very encouraged and supported. My parents came for their weekend visit and we were able to hang out with the family, relax and plan for Andrew's care. We have been getting lots of phone calls, emails, and mail all showing support for our family. Several family members have started wearing Autism Awareness bracelets that my mom bought. My brother Casady has been on a "Cure Autism" crusade lately. He found a website http://www.stankurtz.com/ that has been helpful in looking at the biomedical approach that we are taking and that has a lot of recovering child videos. They are awesome to view if you haven't seen any before, and they provide lots of hope for us and other families. Some people have offered to babysit (thank you, thank you) and others have offered to have garage sales with proceeds to benefit Andrew's treatment. We have gotten lots of phone calls, emails and mail from friends and family. We really appreciate everyone's thoughts and prayers. It really shows us that we are not alone in this.

My sweet mother got to witness one of Andrew's tantrums yesterday. We were at the mall and the plan was to go straight to Stride Rite, purchase new shoes, leave the mall and let him listen to his Simon and Garfunkel CD. It's his favorite. I don't know why but it does wonders to calm him down. We went into the store found new shoes and waited with many other families and their little ones. Andrew decided to scream at the top of his lungs and would not stop. I don't know why I was so shocked. He does this everytime we are out in public, which is why we never take him anywhere and Felt and I take turns getting out. He proceeded to hit the saleslady across the face as she attempted to measure him. During the frustrating moment I started to lose my temper at my sweet and helpful mom only to look over and notice that everyone in the store was staring at us. I can try to calm Andrew during moments like this but it never works- he doesn't understand and we don't understand why he is screaming. I am sure everyone was thinking- why doesn't she calm him down, and what's wrong with him, or she is such a bad mom. It's was very embarassing and frustrating. After I purchased the shoes I met my mom out in the mall to see that he was still screaming and he didn't stop until we got in the car. At first my mom thought I was being a little too self conscious about it but she told me later it was really loud and it was embarassing.

My prayer life has helped me find peace and comfort even in the midst of this crazy time. My mom gave me a book- Finding God in Autism by Kathy Medina a mom of a child on the spectrum. It's a daily devotional and I read it every morning before I get Andrew up. It's really good! We have also been attending Oak Hills Church (Max Lucado's church) and we have really enjoyed the worship service along with getting to see more family members who attend there.

This week we have lots of aptmts. Tommorrow I have a phone aptmt with the nutritionist from The Thoughtful House. She's suppossed to be awesome so I am excited to see how she can help. I really would like to kick things up a notch though because I feel like we are losing more time not making progress. A case worker from Any Baby Can will be here tommorrow to look over finances, disability information, respite care and provide weekly in-home services. I got a call that his EEG did not take because of a faulty electrode. So we have to go back and have another EEG- this week. Can you believe it? They are soooo dumb! I told the lady we would come but we were not paying another co-pay. I hope to get a call from a physical therapist tommorrow because the one that was supposed to eval him on Friday never showed up at the daycare like she told me she would. It stinks that the early intervention services that are federally funded and passed through law are so crappy. Some weeks all of Andrew's therapists show up to see him and other weeks just one. I called to complain on Friday. You would think they would be a bit more careful since I am a therapist and know my rights and the law, but NO. They haven't seen Felt angry- watchout!

One exciting thing this week- we are getting new carpet!!! YEAH!! We knew when we got the house we would have to do this. So after picking out the color and style - it is Rice Paper- burber. Sounds gross but we are excited and it will be installed Thursday. YEAH and thank you Dad for offering to be here when it's installed.

One thing I am worried about this week- I have to talk to my boss about me cutting back on my hours. I will have to take Andrew to therapy 2 days a week for ABA and it means I need to work 4 days a week instead of 5. Please pray about this. I don't know why I am so worried. I will update more later.

Doctors, Doctors, and more Doctors

2007-09-26T14:25:00.000-07:00

We had a follow up aptmt with the neurologist, where he was supposed to have results of Andrew's EEG, Sleep study, blood work, and complete an Autism assessment. My dad and I were met with an uprepared physicians assistant who had no test results and completed the CARS- an autism rating scale in 5 minutes. I was very disapointed because the assessment tool was not used appropriately and I felt like I knew more than he did about the actual disability. What a waste of an afternoon! He did go over the sleep study results, also questionable in my mind. Andrew was having a difficult time with asthmatic symptoms during the sleep study and coughed for what seemed like hours. I didn't feel like it was an accurate picture of his sleep, but now they are referring us to an ENT to look at having adenoids and tonsils removed. I haven't scheduled this because I'm not sure that is the answer to any of his problems. I guess it wouldn't hurt, but it seems like they are just looking for another surgery bill. I have read that many children on the spectrum are being referred for this surgery but that it really doesn't help any of them. One thing the P.A. didn't go over with us is that a referral to a cardiologist was recommended from the sleep study- what? and why? His pediatrician called last night and tried to explain to me, but I am not understanding this. It's all about $$. I hate to think that his Autism diagnosis was completed by someone so incompetent but The ThoughtfulHouse charges $500. Yikes!
On another note- we went to a support group last night. It was downtown, definitely not as nice as Dallas or Austin. This is the first time we went somewhere south of 410, except for weekly trips to Whole Foods. The presentation was for school age kiddos, so it didn't really apply, but it was nice to see other families and to mentally prepare for what's ahead. Maybe we are just really ahead of most parents with kids on the spectrum- because I haven't met any other ones Andrews age.

We are getting set up for ABA therapy. He has an evaluation on Oct.9th for ABA at Treehouse Pediatrics- they work primarily with kids on the spectrum. They are recommending 4 hours a week of ABA at $1200 a month. Another Yikes! We wish our insurance would cover this but none of them do. My heart really hurts for all of the children that will never have the opportunity to receive these services, but thanks to great family we will have support. He also has a Physical therapy evaluation, OT, and ST-speech eval on the 8th at Warm Springs Rehab. They are suppossed to be the best clinic in town and I feel like they might be able to help more than Easter Seals our Early Childhood provider.

Please pray that God will continue to provide financially for us through all of these services because we will go into debt if we have to. I knew I should have taken that Financial Peace class at Prestoncrest before we let Dallas. Please pray that we have made the right choice in clinics and therapists and pray that Andrew will be free from pain. He seems to be crying a lot lately and falling all the time. I'm afraid I might get turned into CPS soon if the PT doesn't start providing services soon. Oh- and Pray that I don't go crazy from all of this stress.

ABA

2007-09-23T20:00:00.000-07:00

Felt and I attended a one day workshop on the ABC's of ABA (applied behavioral analysis) yesterday in Austin. Although I had to do a lot of nagging to get Felt to go, I think he enjoyed it. There were other parents there as well as teachers and therapists. ABA has been around for more than 40 years and started with B.F. Skinner. It is a way to teach children with Autism through working on there behaviors. Kelle Wood-Rich was the presenter and she was really good. She started out in the Dallas area and moved her practice to Austin. She discussed the antecedent-behavior-consequence. It allowed Felt and I to look at Andrew's behaviors- crying, hand flapping, etc. and realize that we are giving him positive reinforcement for negative behaviors, which tells him to keep doing it. Felt was really able to absorb a lot of the terminology and was able to talk to another dad. I think this was the first time he had talked with another parent of a child on the spectrum. It allowed us to think about the future- what we wanted in terms of therapy, schools, treatments, etc. We were a bit disappointed when Kelle, the presenter, said she wouldn't consider the kids that made progress recovered because it gives false hope to parents and that there is no cure for Autism. We know there is no cure, but how about giving some hope? I always knew that 20 hours a week of ABA is recommended for these kids but it was frustrating for us to hear, because who the heck can afford that at 100 dollars an hour? Maybe Jenny McCarthy but not us. Let's hope we hit the lotto soon!

Oprah on Autism

2007-09-18T18:32:00.000-07:00

Today was a great show for me. I don't get to communicate with other parents of children with Autism that often and it was nice to hear what the two ladies had to say. I feel like I am going through the pain and dealing with a lot of similar issues. I can relate to the pictures that Jenny had of her son- the happy smiling faces and then the blank empty pictures of her son- just like Andrew. I remember when he go his vaccinations and especially the MMR. I talked to the nurse and told her how nervous I was- she dismissed my fears. I prayed to God and crossed my fingers telling Him- I can't handle any more so please do not give me Autism. I remember him being sick at the time and I can remember him losing all of his words, and sounds. I remember when Felt would sit with him and sing "If you're happy and you know it clap your'e hands." Now we can barely get him to sit and listen to us sing the song, he hasn't clapped his hands since he was 14 months old. I do a lot of remembering when's lately. I know it's not healthy but it's hard not too. I was thinking tonight that I remember when he would wave bye, bye and say bye, bye to the water as it went down the drain after bath time. He would never do that now- I have to physically hold him down to dry him off as he screams each night after bath. This summer was a hard time as well- I remembered the summer before when he would play with bubbles and say 'bah, bah" wanting more bubbles. Now I can't get him to communicate that he even wants more. He is now a nonverbal child and communicates through his one sign- please, patting his chest. It's hard but he is now losing this one sign. I listened to Jenny talk about the light at the end of the tunnel and seeing that light. For me, the only light I see is Heaven- where I know Andrew will be able to call my name, be free from pain, tell me that he loves me and play ball with his daddy. That is the only thing that I can look forward to. Not a bad thing, but I am praying for days on earth that I can look forward to.

Funny thing today- his pediatrician called me and we talked for a bit. I think she likes us because she hasn't had too many kids on the spectrum. She called to tell me that the FLU vaccination is in- ha, ha. She stressed how important it is that he get it. I know she thought that I was crazy but I told her we were not interested and that he wouldn't be receiving any vaccinations until I felt that they were safe for him- how about never? Doctors won't let up about these , but if it were their own children they sure would feel differently.

The Thoughtful House

2007-09-16T10:51:00.000-07:00

Updates:

Andrew had his sleep study and EEG on Thursday night. I went with him and stayed the night. It was a rough night of sleep. It will be interesting to see the results. He had 27 electrodes on his head and 5 or 6 on his body. He also had a nasal canula in his nose to check oxygen levels. He tolerated the process of putting them on as long as he was watching Baby Einstein- gotta love those DVDs and the music that they have. We arrived at 7 pm but the process of putting the electrodes on lasted till 9:45. They woke us up at 5am to get ready to leave, so he didn't get the best sleep that night.

We have been in contact with the Thoughtful House in Austin. This is a center that does biomedical research and intervention to recover children from Autism. They have really given us some hope. I had an hour phone interview this week, which was intake and then Andrew's case was presented to all of the doctors to see what the next step would be. They suggested an aptmt with their nutrionist which will be on Oct. 4th? I think. After this aptmt we will have an aptmt with Dr. Jepson. He is very well known in the field with Autism, has a son with Autism, and has written a new book- Changing the Course of Autism. My Dad bought us a copy and has been reading his copy. He said it is soo good and provides lots of hope for our children on the spectrum. I am excited about this, especially since Andrew seems to be getting worse. Their website is www.thoughtfulhouse.com

Andrew has been coughing for 3 weeks, we started thickening his liquids again to honey. Obviously the SLPs who were so rude to me this summer didn't know what they were talking about and did a horrible job on his swallow study- $90 dollars down the drain. It would be fine but we know he is in a lot of pain- crying, coughing, crying some more. It's frustrating and even though we don't want him on any meds that could potentially slow his development even more I have to take him a pulmonologist on Monday to get him checked out.

Yesterday he had a great day. We started out at Sea World where he smiled and stared at all of the fish in the aquarium and relaxed in the stroller. We then went to Gymboree for his cousins, cousin- Sophie's 2 year old birthday party. He loved it! This was the coolest party. All of the kids ran around jumping, running and climbing on things, and dancing to music. The kids had a blast! After a nap we hung out with the Altamirano family and relaxed. What a great day!

Trip to Holland

2007-09-11T17:35:00.000-07:00

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

by Emily Kingsley

I thought this really captured what we have been feeling lately. Felt and I have looked at ourselves recently and said "I'm not sure it's Holland...kinda feels like Juarez, Mexico."

EEG and Sleep Study

2007-09-02T09:16:00.000-07:00

Andrew will have an EEG and Sleep Study on the 13th at Methodist Children's hospital. We will be able to get results from this on the 24th as well as get a severity rating from the ADOS and CARS- Autism Rating Scales.

Feeling Down

2007-09-02T08:45:00.000-07:00

Well it's Labor Day weekend and we are spending it like almost all Labor Days in the past years, doing nothing. We did have the opportunity to go to Red River with the Mounce family but we weren't able to communicate and get our act together to go. Very disappointing for us and for them. I know they were looking forward to seeing Andrew. It would have been difficult for us but it would have been fun and good to see everyone. And we love the outdoors.

Lately Felt and I have been feeling pretty depressed and down about life's situation. Things are sometimes hard, it just makes it harder because this is not what we expected in life or for Andrew's life. Andrew has been sick the past couple of days. He got a cold from daycare and you know how that goes, coughing, runny nose, irritable child. It is like a repeat from the beginning of last school year. He wakes up in the middle of the night coughing, and then ends up vomiting. FUN!! I love waking up at 2 am to be bathing Andrew and washing sheets. He is worth it though, I love that little boy! Although he was cleared by HealthSouth from the swallow study for liquids, Felt and I feel that he still has dysphagia and still needs Vital Stim therapy. We aren't sure if we should go back to honey thick liquids, nectar thick?? It's frustrating. I feel like all of those aptmts this summer for therapy were for nothing. I have an aptmt for him to go to a pulmonolgist but really if it is dysphagia there is nothing breathing treatments or a lung specialist can do. Since we can't go back to HealthSouth he is on the waiting list at Warm Springs Rehab. It stinks that they have morning aptmts available but I can't take him because I am at work. Why is everything for these kiddos waitlisted? I don'tunderstand 1 in 150 kids are diagnosed but there is hardly any services for them. I know God is in control but I have to admit that it is hard for me trust and have faith in him. The other night I started crying and couldn't stop as I was trying to get Andrew ready for bed. I have told myself that I am not in the grieving process anymore but I think it is cyclical and I haven't really let myself have a good cry. I don't like to be down about things because it does nothing to help Andrew or us, but sometimes it's hard not to feel this way. I was talking to our PPCD (Preschool Program for Children with Disabilities) teacher about this process. She has a son with Autism that is in middle school. She informed that it doesn't get any easier but that we learn to deal with it better. That was hard to hear.

This week will be difficult for Felt. I will be in Austin Tues.-Thurs. for a workshop and he will be in charge of getting Andrew ready for school, dropping off, picking up and doing dinner and bedtime. Shouldn't be too hard though, I do this everyday.

Please continue to pray for us during this time and for Andrew that we can get him the best doctors and therapist to help him.

Updates

2007-08-20T20:15:00.000-07:00

OK- so I haven't gotten around to posting pics yet. I'm kinda slow. Last week was hard for us. After the aptmt with the neurologist we went and saw the DAN doctor. What a waste of time!! She told us she has a waiting list and that she couldn't help us. She recommended the diet (glutein and cassein free). Some of the research we have read says that it helps to regain a child's attention and their level of awareness. Andrew has been on it for several days. He has been really irritable and cried a lot. It reminds me of someone going on the South Beach diet or Atkins diet and the pain they first experience. He is now getting occupational therapy, which I am not to sure about. Why am I so skeptical of people trying to help us? I just don't understand why they think that the Greenspan theory, or Floor time model, works. It's a child centered approach where they follow the childs lead in therapy. Whatever he does the engage in the same activities. Sounds great but I did this in grad school with autistic kiddos and it didn't do much for them. Let's face it- the whole world doesn't revolve around Andrew and we don't need to start acting like it. I'm looking into ABA (applied behavioral Analysis), the research is much better with this and discrete trial training than the Floor Time Model. I don't know, it's all pretty overwhelming. I make calls, leave messages, check the mail, and wait for people to respond so that we can get him into the right programs and therapy. The other night we noticed that he seemed to drift off more to his own world and we couldn't get his attention. Sometimes we feel like we are losing the real him, and it's heartbreaking. I really feel like this is a disease and not a disorder almost like Alzheimers. It just takes over their whole body. I am hopeful because he is still so young but it is very hard when you see constant regression. We will always fight for Andrew and we want nothing but the best for him. Please keep him in your prayers.

Andrew went to daycare today. I'm not sure how things went but when I picked him up the other kids were all acting like big people and trying to help Andrew play with toys. It was kinda cute and they are all precious. I know there will be a day when the kids at school won't be this sweet, but for now it is cute. His teacher said that he did not take a nap. Yikes!!! Let's hope he can transition better tommorrow.

My first day was ok. The staff at my school are great. They are all very family oriented and I am really starting to love the SA culture here- everyone hugging to greet each other. The best part of my job- I get to leave at 3:00- YEA!!! That has never been the case at any of the 6 schools I have worked at. I'm just not sure that I will make it at 7:30 every morning. Let's hope the slow paced culture of SA will generalize to morning time at school. Right?

Tonight has been crazy at our house. It all started when I was watching Super Nanny and I heard a noise coming from the laundry room. The dog ran to the door and it sounded like an animal. Felt went into the garage and found a racoon. UUGHH! Gross! He said he tried to get it leave, but since we have so much crap in the garage it wondered around in our stuff. He placed our trashcans in the drive hoping to get it to leave but I'm not sure that worked. This would be the time when we need a gun, but we still live in the city limits. I am so grossed out by this that I would rather not go in the garage or laundry room for a year or more. Am I crazy?

Not a good day

2007-08-14T14:52:00.001-07:00

It has been a while since the last post. We have been busy setting up the house, unpacking boxes and trying to schedule therapies. What a mess! Most of the mess (boxes) were sold to a guy in town for fifty dollars. We are really enjoying the house. It is so nice to have people over and have room for them to sit down and talk. After crying three days from being disoriented Andrew is now enjoying it too. He loves going in and out of rooms and attacking our Maddie dog. Too bad we sold the bubble wrap because he really loved swinging that around and knocking things over.

Today was not the best of days. Andrew had an appointment with a nuerologist here in town to talk about developmental problems. Dr. Rotenberg was very nice but very frank and after going over case history and observing him he listed or coded Andrew as PDD (Pervasive Developmental Disorder) otherwise known as Autism. This was really hard for me to take. My dad came along to help with the aptmt and didn't seem quite as upset as I was. We all knew that things were leading up to this diagnosis but it is still so heartbreaking and seems so permanent. It's not like he is dying but I am really grieving the loss of a normal childhood for him. For a long time I was holding out hope that this was just Sensory Integration Disorder, or Developmental Delay and not truly Autism. I can remember back to my first couple of years of working with students with Autism and saying to my self 'God please don't ever let that be me, and please don't give me a child with this'. And he has, and I am angry about it. I'm past the denial stage and definitely in the anger stage. Why me, Why us? What did we do to deserve this? And why is it that 1 child in every 150 children has Autism, an epidemic but yet we have no real answers as to what is causing this.??? Any way, we have follow up appointments for an EEG and sleep study, and after that he will go back for Autsim rating scale to look at severity and other issues.

Yesterday I had to go the obgyn doctor for an annual visit. It made me soo sick to my stomach to see all the expecting moms and dads sit in the waiting area. I remember how special a time it was for us as we waited too and dreamed about our baby's life. I sat looking at these expecting parents feeling jealous that we were not somehow stagnate in that stage. I hope and pray that none of those people have to go through what we are going through. Things just feel shattered.

I am very worried about next week. Andrew will be fulltime in day care again and I know he will stick out and defninitely be the high maintenance kid. What am I going to do? I can't really tell them 'he is PDD' but then again they can't discriminate can they?

After seeing the doctor today the nurse looked at me and said 'have a nice day.' I thought to myself a nice day? - this a bad day.

Please pray for us.

One more thing...

2007-08-03T14:17:00.000-07:00

With all of the good things happening I forgot to mention that we are down to one car. My car has decided to shake so bad that you can barely drive it. What fun! If anyone knows of a good mechanic down here please let us know. Felt just loves being driven to and from work.

Moving Day

2007-08-03T11:21:00.000-07:00

Lots of exciting things have been happening around here. Last week Andrew received a comprehensive evaluation from Easter Seals the Early Childhood Intervention. It was determined that he would receive 2hours and 15 minutes a week of therapy from them in the home or daycare center. He will get 45minutes of speech therapy and 45 minutes of occupational therapy and 45minutes with a developmental teacher. Isn't that great? I was so pleased with them and his teacher Ms. Jackie has already come out this week to work with him. He had a great time with her and she was very sweet at offering suggestions to work on sensory needs. He will continue to get 2 hours a week of Vital Stim therapy/Speech therapy at HealthSouthRIOSA until I go back to work. Lots of work for the little man! He has an appointment next week with a DAN (Defeat Autism Now) doctor to look at a Cassein and Gluetin free diet. Although it might really help with his development it will not be fun trying to make two different meals at dinner time.

We closed on our house Wednesday and I just picked up the keys an hour ago from the realtor. I found out from our moving company that tommorrow is the big day for delivery. We finally have a house again. !!!!! Super exciting!! Andrew has already enjoyed running around and climbing on the fireplace and falling ofcourse.

Although we are super excited, we are a bit sad not to be living with my brother and sister-in-law. We have had fun and have really enjoyed getting to bond with our adorable nephew. What a blessing family is! I promise to put pictures up soon and will email out our new address.

Resources- YEA!!

2007-07-23T13:31:00.001-07:00

After a relaxing weekend in Carlsbad we are back to some craziness. The appraisal on our house was completed this morning and we hope to close on it by the end of the month. Although we feel very comfortable at our brother and sister-in-law's house, it will be nice to have our own space again and have our Maddie dog back.

I contacted a parent of a student that I had worked with years ago in Mesquite. I was hoping she could be a go to person for help with resources for Andrew. She and I talked for about an hour today and I can say that she is an answer to many prayers. She sent me a list of resources in San Antonio and was very comforting to talk to. She can definitely relate to what we are going through and is pointing me in the right direction of where to start with therapies and doctors. After talking to her and reading lots of info online I am wondering if we are heading towards a diagnosis of Autism. You would think that after all these years of working with children that I would know if Andrew had this disability. It is very different being his Mom and it's even harder to work with him doing speech and non-speech tasks that I would do in therapy. Through one of the resources that Carol gave us I was able to contact Respite Care about possible day care. I'm not sure but I think the center is located downtown so that might not work out best for us but I am feeling more confident that we will find someone or someplace that will watch him while we are at work.

July 20, 2007

2007-07-20T10:41:00.000-07:00

Wednesday was our 4 year anniversary. YEA!! Both of us feel like it has been a lot longer. We celebrated by having dinner at the Grey Moss Inn, a quaint little restaurant located in Grey Moss, TX, just outside SA. It is on a scenic drive in the country and the food was very good. Felt said it reminded him of the Cotswald in the UK. If you ever come this way you should definitely check it out. www.grey-moss-inn.com

Some people have asked why we moved to SA and what we are actually doing here. We moved here for family and jobs. Andrew was pretty sick this past year and we knew that we needed help and a support system. Our family has tried to help us out as much as possible in Dallas but it makes it easier with everyone being here. We are enjoying getting to see our nephew- Jackson and spend more time with all the other family and extended family. Felt works for Southwest Research Institute as a research Engineer in the automotive devision and I will be working for Northside ISD as a speech therapist.

With all the traveling and moving this summer we are in for 2 more trips. The first will be this weekend to Carlsbad, NM for a friend's wedding and the second will be later to Red River, NM for family reunion. Well, gotta get packing- I can't forget the Elmo and Baby Einstein DVDs

We're Here

2007-07-17T14:17:00.000-07:00

We have been in San Antonio for two weeks and are somewhat adjusting to life here. Our sweet brother and sister-in- law have given us space and time to get ourselves together and find a house. After looking at houses for over a week and letting Felt torment realtors with questions we have an offer on a house close to Sea World and hope to close in a couple of weeks. I am not crazy about the house but I think Felt is in love with it. It has 2600 square feet, a large deck in the backyard with a great view and a hot tub. Yea!!! It has lots of space for us and is in good shape for being a 20 year old home. It is also 10 minutes from both of our jobs! We are really excited about that.

Andrew has been going to series of apointments- therapy, evaluations, new doctors, etc. Lots of fun for him! He loves being the center of attention. We have him scheduled to see a neurologist in August and the earliest we could get him into a developmental pedi was in February- yes, Feb., can you believe that? There is such a need for help with kiddos like Andrew. We still have no answers as to why he has regressed in development. His latest speech eval here in town was definitely a hard one. The SLP (speech therapist) made comments like "he had to have been born with something, some condition" and "You haven't taken him to a neurologist before?" I left there feeling guilty and angry. She said a lot of things that I didn't want to hear but that needed to be said. Felt and I are both having a hard time dealing with all of this and the move. We feel frustrated and just heartbroken for Andrew. Although he is not in any physical pain we want the best for him and we want him to be able to play like other kids his age. It's just a hard time right now and it's hard to explain to other people. Even situations where Andrew gets excited and needs deep pressure and will come to someone grab their arm tightly and clench his teeth- it can be a pain trying to explain to each person why he is doing this.

Please pray for us this week. Pray for good and knowledgeable doctors and therapists to work with him, pray for peace with this situation, pray that the house will go through, and pray that God will provide financially for all of this (especially since insurance only covers 20 speech therapy sessions a year). Although I have not updated this blog since Thanksgiving I plan to be writing a lot more. Stay tuned and thanks for everyone's support.
Brandi

Thanksgiving

2006-11-26T08:48:00.000-08:00

After a restful Thanksgiving at the lake we are back home to our crazy life. It seems like we spend every weekend in a race to get all the 'to do's' done. I spend the work week making lists and never get everything accomplisehd on the weekend when I really just want to sit down and sleep. Andrew has gotten a lot more active lately and even his aunt and uncle were amazed at his hyperactivity. Not sure if it has anything to do with the breathing treatments but I pray that it does and that this wild man will eventually settle down.