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.