Blessings

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

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

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

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

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

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

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

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.