Done with Doctors

After a several days of hospitals vistis I can say that I am done with Doctors all together. Andrew's tonsillectomy went ok. My dad and I had to hold him down as he was fighting us coming off the anesthesia, but with morphine he calmed down. That hospital stay was weird. We had to share a room with another little girl that had the same surgery performed. It was quite fun trying to eat my dinner Friday night and listening to her vomit all over the room after eating chocolate pudding. After being woken up by her whining I vowed to my mother that
I would never have a daughter. It was really bad and her whole family slept in the room that night. Andrew ended up staying a little longer because his oxygen count was low during the night. I will never forget being woken up by a large nurse at 11 pm telling me to wake Andrew up so that he could take his antibiotics. She said it was the only way he could get better. I went off on her and told her it was one of the reasons that he is autistic and to not ever say that to me again. Wow! One neat thing was that while we were getting him ready for surgery the admitting nurse let us know that her 5 year old son has autism and that she too takes him to Treehouse Pediatrics. In fact his son has the same ABA (applied behavioral analysis) therapist. She was so sweet and I thought that was cool.
I took Andrew yesterday to Methodist Childrens for his 24 hour video EEG. It was an interesting experience. After getting there at 8:30 the assigned time, they did not put electrodes on him till 1:30 in the afternoon. What? We were a little frustrated by how slow things were especially knowing that he had missed therapy yesterday morning. The thing that was hard for him was sitting in the bed the entire time. He could not stand, get up and could barely move around for 24 hours. There are not enough videos for that. We were on the hematology and oncology floor so we got special treatment from their nurses as their patients usually stay for several months. When we got home today I called the neurologist to see when we would get results and I was told that I had to schedule an appointment for that. The earliest aptmt is Feb. 21st. Can you believe that? Even after I explained that we were trying to make sure he was not having seizures this was the earliest time they could get us in. Felt says he will call to complain in the morning but more than likely we will have to find another neurologist that can read the results. I am sooo done with doctors offices.
I guess I need to go and take my chill out medicine for the night. I am just realizing how hard it is to manage all of this and I wish there was a way that I could stay at home with him. We are very blessed though I know that Andrew is such a special boy and I feel very lucky to be his mom. Even with all of his challenges he has special gifts to show all of us everyday.

One Day at a Time

Things have been really crazy for us this week. It is always a busy time for everyone before Christmas but Andrew is definitely keeping us extra busy. Last week we had to do a urine sample to be shipped to France. We got that taken care of but it took us sending it through DHL. The people at the Post Office said it was a biohazard and could not send it. We attempted to do a chelation trial this week with a 6 hour urine sample before and a 6 hour urine sample after the suppository. That was a waste of time because even though Dandy (my dad) stayed home with Andrew, the urine collection bags kept coming off and leaking out into his diaper. What a pain! Finally we called the Thoughtful House and told them it wasn't going to happen. I requested a meeting with Easter Seals (our Early Childhood Intervention) about 2 weeks ago. After making repeated phone calls to his speech therapist and finally calling the executive director to complain I received a returned phone call on this. I told her we want to make changes to his goals, add goals and make them measurable. Really we want 20 hours a week of therapy for him and we will not stop until we can get this. This is a time that we should be taking advantage of and I feel like they are not willing and do not want to really provide early intervention for him. I went to the daycare to see if I could get a statement from the director saying that her staff was not responsible for 1:1 therapy and instruction for Andrew, but she would not do it. Oh well, at least I tried. I was so frustrated with her that I even mentioned advocates and attorneys. ?!? What was I thinking. After talking with Andrew's Speech Therapist this week I realize she thinks he is more Mentally Retarded than autisic and says that he needs to work on interacting and engaging more than developmental skills like putting things in and taking things out. So I am preparing for a big battle, printing out resources and info and I ordered the Brigance assessment and have been writing my own goals for him that will be measurable. My anxiety has been at an all time high about this, but in ten years I won't know this woman and nothing will matter except what I have done for Andrew. In the mean time I have had to order protein powder, and protein bars for Andrew because he has become such a behavioral eater that he only wants crunchy stuff. What a pain!
Today is a big day because he is having surgery- tonsillectomy and adenoids removed. He will stay over night and then it is back to the hospital on Monday for a 24 hour EEG to see if he is having seizures. It's sad but Felt and I would almost be happy if we knew he was having them because there is medicine for that and we are so frustrated with the lack of progress he is making. Please pray for us and pray that God will give Andrew a speedy recovery.

Looking Back

I don't know if this is healthy or not but I often find myself looking back at all of the things that Andrew used to do. It reminds me that he isn't the same little boy that he was a year ago and it helps drive the force to fight for him in getting treatments, therapy and looking for an answer. He did have words- Dada was his favorite and he would shout it and he would call me dada as well. He has always loved bananas and would say 'nana' to request one. I remember several times that he said 'addie' for our dog Maddie. He also said 'bye' bye' and would wave bye bye to the bath water at night. He said 'bu,bu' for balls and for bubbles. He would sit on Felt's lap and clap his hands to the song If you're happy and you know it clap your hands. He loved to look at books and I can remember several times finding him in his room sitting on the floor and looking at books. He also loved balls and he would throw them around the house, run and chase them. When I would pick him up from daycare he would get so excited to see me that he would cry and cry until I held him in my arms. We would sit on the bed on Saturday mornings and take a nap together and laugh, and make sounds.
For Andrew things started to slowly slip away starting at a year. The words went away first and I remember telling Felt last Christmas that I was really worried and I did not want to go anywhere for the holidays. I could see the red flags go up. After getting PE tubes in his ears he still did not get speech back and that really concerned me. Then he started walking at 15 mos, and a month later he was into walking around the house staring at the smoke alarm lights. We thought it was cute but kinda strange. He would also walk to our back door and stare at he crack between the door and the wall- now this definitely sent off red flags and again Felt would respond to my fears by saying 'I don't know' and 'he's just behind.' I knew things weren't right but I wanted to believe what everyone else was saying. At 18 mos my dad called and said he needed to be evaluated for Autism- this was during the time we were trying to sell the house, look for jobs in San Antonio and think about getting a new house. I was so stressed and upset that my Dad thought that he had this. I kept trying to explain to my Dad what a developmental delay was, but in my head knowing that it was really possible.
I wish I had known that this would have been the road we would head down. I wish that during the time Andrew was so sick and on constant breathing treatments that I would have quit work, stayed home with him and enjoyed the time that we could engage and enjoy eachother. I still enjoy Andrew but it is very hard for him to enjoy being with us. He can't wave, speak, imitate any gestures, clap, use a fork or spoon. He is constantly displaying stimming behaviors and he appears empty and disengaged the majority of the time. If we let him he would walk around on his tip toes aimlessly around the house, pulling on his fingers and humming. Felt and I call it the autistic hum because you can hear the autistic kids get out of their cars at therapy. It's the same hum. He is unable to turn the pages in the book and has no fine motor skills to play with any of the old toys that he once enjoyed. He is at the point where can't even sit in a chair without sliding out. He has such low tone now. His swallowing has gotten worse and now he only uses the front teeth to chew and then chokes himself because he can't get the food down. Scary! It's hard to think about all of this but I find myself telling more and more people his story and maybe it's therapeutic.
He now has a weighted blanket and it has worked well for him. It's sad but he can't even get up if it is on him- that's how little strength he has. And the blanket is not that heavy. He is really into music lately and stands over the computer crying until he hears the song Breathe by Anna Nalick. Crazy kid!! He even cries when the song is coming to an end. He also loves the Beattles and he likes Jazz music. Now if I could get him to like Country.

Thoughtful House Visit

We had our first visit to the Thoughtful House last Friday. It was really a good visit and we are definitely impressed. Dr. Jepson was able to talk extensivly about the biological aspects of children with Autism. Based on the results of stool and urine samples from Andrew, he has low Zinc and B12 levels. He does not have a high yeast or bacteria count but these kiddos bodies are unable to get rid of yeast and bacteria the way our bodies do so that could be problematic for him. They also have problems with their enzymes. A lot of the stuff that was said is way over my heads and I am thankful that Felt was able to understand some of it. The result is that we have increased his supplements, and he now gets a calcium supplement. We will be looking for a protein powder to supplement since he is having difficulty eating meats except bacon. He will be on a antibiotic followed by a round of antifungals (diflucan) to kill of yeast. Oh- and he will have a one day chelation trial (very scary) followed by a 6 hour urine sample (what fun!) to be shipped to a lab in France for testing. Can you believe that? That's the craziest part of it. I am just pleased that we have finally found someone who knows more than us on Autism. That afternoon Andrew received his Autism diagnosis from the CARD (center for Autism and Related Disorders) program. Not sure if this was worth all the money but they did spend aproximately an hour and a half with us.

Now we have to think about where we go with all of this. Andrew needs more therapy and they recommended 20 hours a week. It's very costly and Felt has talked about pushing our ECI for more free hours which will mean confrontations and arguments......something I don't look forward to. Pray for us that somehow we will be able to get him what he needs. I know God will provide and things will work out. I am confident of this. Look how great day care turned out for us and I was really doubtful.

Yesterday I took Andrew to the ENT (ear nose and throat) doctor and they want to do a tonsillectomy and removal of his adenoids. Hopefully this will help him sleep better, stop the snorning and even help his ears and development. It does require a hospital stay so I will have to schedule that today.

Results of his MRI last week look good but with Dr. Jepson's encouragement we are thinking of having the 24 hour EEG just to make sure that there is no seizure activity. That ought to be loads of fun considering the first two were so difficult and they were only a hour and a half long.

In all of this we are trying to keep things normal and look forward to the Thanksgiving break where we plan to go to Carlsbad, NM to visit grandparents. This will only happen if Felt can fix my car- it is really messed up.

One more thing!

Just wanted to share that Andrew was on the 10 O'Clock news Sat. night on CBS- Austin. My parents and I took him to the Autism Walk at the Dell Diamond that morning and pulled him around in his red wagon. How could someone not put him on the news? He was too cute and enjoyed the country band that played there. It was really good to see other families, and get resources. Oh- and he got an autographed picture of a guy named Jessie that is on the show Friday Night Lights. Kinda cool!

Andrew at the birthday party enjoying all of the attention!

Roar!

Just had to include a picture of the awesome cake! Didn't I do a good job?

Andrew Turns 2

Andrew turned 2 Nov. the 2nd.. It was a special day for all of us but also hard as well. For so long I held on to the fact that he wasn't 2 yet, and that he would hopefully start to talk before he turned 2. When I sang happy birthday to him that morning he smiled and looked around very excited to see the house full of streamers and birthday banners. We had a small birthday party for him on Saturday with family and he seemed to enjoy the day especially the cake. I made him a chocolate gluten and cassen free cake with the encouragement of my mother-in-law and it actually turned out ok. After eating a whole piece Andrew could not go to sleep that night and woke up the next morning at five acting like he was on speed. It was really wild and definitely shows us that so much of what goes on with these kids depends on diet and nutrition. It was really nice to have family around to celebrate the day.

Andrew has been doing better with all of the therapy. He is starting to enjoy the brushing protocol that the occupational therapist recommended and is learning to request music by signing for Itunes. He now stands at the computer and trys to move the mouse to get music to play. Right now he is really into Jazz and loves the Sleepless in Seattle CD. I continue to enjoy meeting with other parents and talking to them at therapy. It is really comforting to hear their stories and gives me assurance that we are making the right choices.

We have lots of upcoming apptmts. Tommorrow he has an MRI early in the morning and on Friday we go to the Thoughtful House to meet with Dr. Jepson and Scott Allen (flying in from

California) who will also complete a diagnostic battery. It was hard to fill out 20 pages on behavior and developmental questions because so many of my answers were 'no he doesn't do that yet, but he did at one time.' Hard stuff to think about! We keep calling this our $1,000 dollar day because it will cost close to that. Please pray for us and pray that God will continue to provide financially for us. No, I am not asking anyone for money and we are not in need of any. We think that things will work out for us, but we can't imagine how parents with more than one child afford all of this. Please pray for Andrew that he will cooperate and that we will get our money's worth. We are excited and a little nervous and know that God continues to bless us in this situation. Sometimes I hear myself singing Kanye West's song "that-that don't kill me can only make me stronger." Crazy I know because I can not stand Kanye after his whole George Bush hates black people statement. What a loser!

On another note Andrew is now having difficulty with sleeping. At daycare he doesn't nap anymore and laughs while running around the other children. At night he is waking up at 9:00 and laughing, flapping his arms and legs until after midnight to wake up at 5:30 the next morning doing the same thing. It frustrates me because nothing seems to calm his brain back down. I really wonder what is going on in there because he has been the best sleeper since he was 6 weeks old. I have never had problems with this before. It scares me in the sense that I'm afraid he will wake up fall off the bed and hurt himself while we are asleep. Better get those baby monitors back out! The other day while trying to nap he stood up leaned over the rail and fell head first into his trash can. He was actually stuck crying when I ran in. It was the craziest scene. I have ordered him a weighted blanket so hopefully that will help but who knows how long this could last. I am thinking about supplementing with Melatonin but I'm afraid that he will become attached to it and always require this. ???? Any suggestions?

Well, I have finally posted and even learned how to get the pictures put in. YEA for me! The first was his lion costume on Halloween. He was soo cute and actually had fun being pulled around and made to trick-or-treat. We had him sign please and at this age no one expects the kids to say 'trick-or-treat' so it worked out ok. He wasn't able to eat the candy but one of the daycare teachers bought him gluten free candy so he had some of that when he got home. The other pictures- him at the pumpkin patch and then the birthday cake ofcourse. He was scared we would take it away. Enjoy!