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!
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.
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.
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.
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.
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.