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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!

The Babbling Continues!!!!!

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

Looking forward

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