Running and Running and Running

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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!