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.

The Past 10 months

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

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)

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!

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!