Sunday, December 30, 2007

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!

Saturday, December 29, 2007

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.

Tuesday, December 18, 2007

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.

Friday, December 14, 2007

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.

Monday, December 3, 2007

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.

Tuesday, November 20, 2007

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.

Tuesday, November 13, 2007

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?

Wednesday, November 7, 2007

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!


Monday, October 22, 2007

Therapy World

Although I have already joined the "therapy world" as a profession, Andrew and all the other family members are joining as well. I now take Andrew to ABA therapy 2X week and my dad takes him on Tues/ Thursday's to Speech and OT at Warm Springs. Wow is Andrew keeping Dad young! Since we moved here he has lost 35 pounds. I am really thankful that I am able to take him to some of his therapy and I am so grateful for Dad's help. I am able to sit and reflect on things, talk to other parents of kids on the spectrum and see other boys his age and older dealing with the same issues. It is tough to see boys 4 and 5 years old with no words and 1 sign and I pray that God will bless Andrew by giving him more language. Last Friday he had a really good day. His Speech Therapist called to tell me that he was imitating a sign that she had done in therapy. I had taken him to my brother and sister -n-laws house and my brother was able to see some great joint attention- looking at Elmo, back at Uncle Cas and then back at Elmo and signing please. Even Felt noticed better eye contact with Andrew. All seemed to go well until Andrew got a little too excited and fell scraping his nose on the bed rail. He is now getting the shock and awe looks everywhere we go. As I sat waiting for Andrew in therapy today I realized that through the years of my work with children with Autism and my level of interest that somehow God had prepared me for this journey. All the time that I spent making materials for children, attending workshops that were never needed for the schools but that pertained to Autism........God was preparing me mentally and emotionally. He gave me a compassion and understanding for these children and prepared my heart. I remember talking to a girlfriend once when I was pregnant, telling her that it would be the worst thing to have an autistic child. Well it's not! It's not a road I would ever choose to travel, but we will fight the good fight and do everything in our power to help Andrew. It's hard for me to realize that God has a plan in this and that someday it will be revealed. I just wish it was on my time and I wish that someone would be able to tell me if we are doing all the right things.

Friday, October 12, 2007

Hope

Everyday we hear more recovery stories from parents of children with Autism. It really provides hope for Andrew. Every now and then we get small glimpses of his true personality. Lately I have been bringing him home after school and putting him in bed and reading to him. Sometimes he listens while sucking on his pacifier and holding his blankey, and other times he looks around humming. I started to read the No David book to him yesterday. He laughed at each page, looking at the pictures, and really waiting for the next page. It is a cute book if you have never read it. Each page "No, David don't play with your food!", Andrew would laugh histerically. It really made me happy to see that I could engage with him. I read it several times and then Felt came home and read it to him. Each time he would look, listen and laugh as we read the line on each page. This is huge for him because I haven't been able to get him to attend to a book since May. Today at daycare he fell and hit his head on the corner of the window seal. On the way home he was still fussy and in pain. At one of the stoplights I turned around to him and said "No David, go to your room!" He busted out laughing, then crying again till I said another No David line from the book. Tonight as I sat in his bed getting him ready to sleep I told him to give Pooh a kiss. After I leaned over and kissed Pooh, he followed and kissed Pooh. It could have been accidental but I like to believe that he understood what I was asking him to do. These little moments are huge for us and really give me hope that Andrew will recover lost skills.

Wednesday, October 10, 2007

Updates

My dad and I took Andrew to the EEG Monday night. By the grace of God it was completed and we should get results soon. We hope and pray that he is not having any seizures. The experience was pretty hard. He had 27 electrodes attached to his head and a net to keep them on. He was suppossed to go to sleep but instead decided to tried to pull of the electrodes. I had to hold him down while he was screaming until he fell asleep. Not fun! It was definitely hard for Dandy (my dad). I called to see when we get results and they will not give them to us until we schedule an aptmt. Can you believe the run around we get? Easter Seals seems to be giving me a hard time too. At first they wanted to offer us a different OT and now they are sayng that they do not duplicate services so they would discontinue services from them. I feel torn with so many different options, weighing them, insurance, co-pays, ......once again making me stressed and crazy. I feel like I am constantly analyzing and wondering if I am making the right decisions for him. It's hard! I wish there was a clear answer. I have thought about contacting an advocate. Maybe someone who could give me more insight on Easter Seals and what they are suppossed to provide by law. I am praying for the best therapists who have a desire to help him. Wow-this situation is so much bigger than us.
A couple of things that have changed with Drew-Drew lately are his picky eating habbits. We noticed this about a month after the GFCF diet change. He hates red pasta's, but will eat tomatoes. He also cries now when he falls, most of the time. This was hard in the past because we knew he fell hard enough that he bruised but wouldn't cry at all. Scary! We are looking forward to more changes with him.
Please pray for us as we try to make the right decisions and are constantly worried that we have made the wrong ones.

Saturday, October 6, 2007

Making me CRAZY!

That's really how I feel lately. All these appointments and phone calls, expenses, messages, tests,bills.......I feel like I am going to go crazy! We were called several weeks ago about the EEG results. There was a faulty electrode resulting in the need for a do over. My dad and I went on Friday for the test but after sitting for 15 minutes were told that the computers were down, so here we are again with no results and I am waiting to take him at 6:45 tonight. He had an ABA evaluation Friday and will receive 3 hours a week of this therapy starting next week. I took him to Warm Springs rehab today for OT (occupational therapy) and Speech evaluations. It was a long visit but they were thorough and I felt like they knew what they were doing. It was hard to hear from the OT therapist that he is one of the worst cases that she has ever worked with, considering she looks late 40's. I knew he was low but it's hard to hear from other people. She was very positive though and excited to work with him. Speech was ok but she told me that if he wasn't able to focus or attend (which he can't for even 3 minutes) she wouldn't be able to help him with language acquisition. I know this too being a therapist, but again hard to hear. I just can't let everyone give up on him. He's not 2 years old yet, and we can't give up the fight this early. I tell myself this but it's honestly hard to keep fighting when I see no improvements and just more regression. I sat in the lobby waiting for the evaluations and the receptionist pointed out some toys he might play with. I couldn't tell her- he doesn't play with toys. No one seems to understand and instead people just seem to stare. The constant humming, flapping arms, walking on toes, falling face first to the ground, disinterest in toys or people, blinking eyes.....it's hard no to be anything but depressed. How did we get this far regressed? Why Andrew? It makes me cry just thinking about it. So, I'll stop. On another note- we had our aptmt with the Thoughtful House nutritionist. It was awesome- she was great and recommended lots of tests, and diet information and an aptmt with ..... Dr. JEPSON. YEA!!! We thought we would have to beg to get in to him but we see him Nov. 16th. I just pray that we can seem some skills recovered, I pray for our Andrew that he will be able to have a meaningful life. Please pray for us as we get more and more stressed, frustrated with eachother, the situation. Please pray for Andrew that God will give him skills, keep him safe. The OT did recommend him wearing a helmet, as hard as this was to hear- I know he needs it. I wouldn't be suprised if he already has a TBI (traumatic brain injury). Please pray for answers for us.

Sunday, September 30, 2007

Encouragement and Support

This weekend we have been feeling very encouraged and supported. My parents came for their weekend visit and we were able to hang out with the family, relax and plan for Andrew's care. We have been getting lots of phone calls, emails, and mail all showing support for our family. Several family members have started wearing Autism Awareness bracelets that my mom bought. My brother Casady has been on a "Cure Autism" crusade lately. He found a website http://www.stankurtz.com/ that has been helpful in looking at the biomedical approach that we are taking and that has a lot of recovering child videos. They are awesome to view if you haven't seen any before, and they provide lots of hope for us and other families. Some people have offered to babysit (thank you, thank you) and others have offered to have garage sales with proceeds to benefit Andrew's treatment. We have gotten lots of phone calls, emails and mail from friends and family. We really appreciate everyone's thoughts and prayers. It really shows us that we are not alone in this.

My sweet mother got to witness one of Andrew's tantrums yesterday. We were at the mall and the plan was to go straight to Stride Rite, purchase new shoes, leave the mall and let him listen to his Simon and Garfunkel CD. It's his favorite. I don't know why but it does wonders to calm him down. We went into the store found new shoes and waited with many other families and their little ones. Andrew decided to scream at the top of his lungs and would not stop. I don't know why I was so shocked. He does this everytime we are out in public, which is why we never take him anywhere and Felt and I take turns getting out. He proceeded to hit the saleslady across the face as she attempted to measure him. During the frustrating moment I started to lose my temper at my sweet and helpful mom only to look over and notice that everyone in the store was staring at us. I can try to calm Andrew during moments like this but it never works- he doesn't understand and we don't understand why he is screaming. I am sure everyone was thinking- why doesn't she calm him down, and what's wrong with him, or she is such a bad mom. It's was very embarassing and frustrating. After I purchased the shoes I met my mom out in the mall to see that he was still screaming and he didn't stop until we got in the car. At first my mom thought I was being a little too self conscious about it but she told me later it was really loud and it was embarassing.

My prayer life has helped me find peace and comfort even in the midst of this crazy time. My mom gave me a book- Finding God in Autism by Kathy Medina a mom of a child on the spectrum. It's a daily devotional and I read it every morning before I get Andrew up. It's really good! We have also been attending Oak Hills Church (Max Lucado's church) and we have really enjoyed the worship service along with getting to see more family members who attend there.

This week we have lots of aptmts. Tommorrow I have a phone aptmt with the nutritionist from The Thoughtful House. She's suppossed to be awesome so I am excited to see how she can help. I really would like to kick things up a notch though because I feel like we are losing more time not making progress. A case worker from Any Baby Can will be here tommorrow to look over finances, disability information, respite care and provide weekly in-home services. I got a call that his EEG did not take because of a faulty electrode. So we have to go back and have another EEG- this week. Can you believe it? They are soooo dumb! I told the lady we would come but we were not paying another co-pay. I hope to get a call from a physical therapist tommorrow because the one that was supposed to eval him on Friday never showed up at the daycare like she told me she would. It stinks that the early intervention services that are federally funded and passed through law are so crappy. Some weeks all of Andrew's therapists show up to see him and other weeks just one. I called to complain on Friday. You would think they would be a bit more careful since I am a therapist and know my rights and the law, but NO. They haven't seen Felt angry- watchout!

One exciting thing this week- we are getting new carpet!!! YEAH!! We knew when we got the house we would have to do this. So after picking out the color and style - it is Rice Paper- burber. Sounds gross but we are excited and it will be installed Thursday. YEAH and thank you Dad for offering to be here when it's installed.

One thing I am worried about this week- I have to talk to my boss about me cutting back on my hours. I will have to take Andrew to therapy 2 days a week for ABA and it means I need to work 4 days a week instead of 5. Please pray about this. I don't know why I am so worried. I will update more later.

Wednesday, September 26, 2007

Doctors, Doctors, and more Doctors

We had a follow up aptmt with the neurologist, where he was supposed to have results of Andrew's EEG, Sleep study, blood work, and complete an Autism assessment. My dad and I were met with an uprepared physicians assistant who had no test results and completed the CARS- an autism rating scale in 5 minutes. I was very disapointed because the assessment tool was not used appropriately and I felt like I knew more than he did about the actual disability. What a waste of an afternoon! He did go over the sleep study results, also questionable in my mind. Andrew was having a difficult time with asthmatic symptoms during the sleep study and coughed for what seemed like hours. I didn't feel like it was an accurate picture of his sleep, but now they are referring us to an ENT to look at having adenoids and tonsils removed. I haven't scheduled this because I'm not sure that is the answer to any of his problems. I guess it wouldn't hurt, but it seems like they are just looking for another surgery bill. I have read that many children on the spectrum are being referred for this surgery but that it really doesn't help any of them. One thing the P.A. didn't go over with us is that a referral to a cardiologist was recommended from the sleep study- what? and why? His pediatrician called last night and tried to explain to me, but I am not understanding this. It's all about $$. I hate to think that his Autism diagnosis was completed by someone so incompetent but The ThoughtfulHouse charges $500. Yikes!
On another note- we went to a support group last night. It was downtown, definitely not as nice as Dallas or Austin. This is the first time we went somewhere south of 410, except for weekly trips to Whole Foods. The presentation was for school age kiddos, so it didn't really apply, but it was nice to see other families and to mentally prepare for what's ahead. Maybe we are just really ahead of most parents with kids on the spectrum- because I haven't met any other ones Andrews age.

We are getting set up for ABA therapy. He has an evaluation on Oct.9th for ABA at Treehouse Pediatrics- they work primarily with kids on the spectrum. They are recommending 4 hours a week of ABA at $1200 a month. Another Yikes! We wish our insurance would cover this but none of them do. My heart really hurts for all of the children that will never have the opportunity to receive these services, but thanks to great family we will have support. He also has a Physical therapy evaluation, OT, and ST-speech eval on the 8th at Warm Springs Rehab. They are suppossed to be the best clinic in town and I feel like they might be able to help more than Easter Seals our Early Childhood provider.

Please pray that God will continue to provide financially for us through all of these services because we will go into debt if we have to. I knew I should have taken that Financial Peace class at Prestoncrest before we let Dallas. Please pray that we have made the right choice in clinics and therapists and pray that Andrew will be free from pain. He seems to be crying a lot lately and falling all the time. I'm afraid I might get turned into CPS soon if the PT doesn't start providing services soon. Oh- and Pray that I don't go crazy from all of this stress.

Sunday, September 23, 2007

ABA

Felt and I attended a one day workshop on the ABC's of ABA (applied behavioral analysis) yesterday in Austin. Although I had to do a lot of nagging to get Felt to go, I think he enjoyed it. There were other parents there as well as teachers and therapists. ABA has been around for more than 40 years and started with B.F. Skinner. It is a way to teach children with Autism through working on there behaviors. Kelle Wood-Rich was the presenter and she was really good. She started out in the Dallas area and moved her practice to Austin. She discussed the antecedent-behavior-consequence. It allowed Felt and I to look at Andrew's behaviors- crying, hand flapping, etc. and realize that we are giving him positive reinforcement for negative behaviors, which tells him to keep doing it. Felt was really able to absorb a lot of the terminology and was able to talk to another dad. I think this was the first time he had talked with another parent of a child on the spectrum. It allowed us to think about the future- what we wanted in terms of therapy, schools, treatments, etc. We were a bit disappointed when Kelle, the presenter, said she wouldn't consider the kids that made progress recovered because it gives false hope to parents and that there is no cure for Autism. We know there is no cure, but how about giving some hope? I always knew that 20 hours a week of ABA is recommended for these kids but it was frustrating for us to hear, because who the heck can afford that at 100 dollars an hour? Maybe Jenny McCarthy but not us. Let's hope we hit the lotto soon!

Tuesday, September 18, 2007

Oprah on Autism

Today was a great show for me. I don't get to communicate with other parents of children with Autism that often and it was nice to hear what the two ladies had to say. I feel like I am going through the pain and dealing with a lot of similar issues. I can relate to the pictures that Jenny had of her son- the happy smiling faces and then the blank empty pictures of her son- just like Andrew. I remember when he go his vaccinations and especially the MMR. I talked to the nurse and told her how nervous I was- she dismissed my fears. I prayed to God and crossed my fingers telling Him- I can't handle any more so please do not give me Autism. I remember him being sick at the time and I can remember him losing all of his words, and sounds. I remember when Felt would sit with him and sing "If you're happy and you know it clap your'e hands." Now we can barely get him to sit and listen to us sing the song, he hasn't clapped his hands since he was 14 months old. I do a lot of remembering when's lately. I know it's not healthy but it's hard not too. I was thinking tonight that I remember when he would wave bye, bye and say bye, bye to the water as it went down the drain after bath time. He would never do that now- I have to physically hold him down to dry him off as he screams each night after bath. This summer was a hard time as well- I remembered the summer before when he would play with bubbles and say 'bah, bah" wanting more bubbles. Now I can't get him to communicate that he even wants more. He is now a nonverbal child and communicates through his one sign- please, patting his chest. It's hard but he is now losing this one sign. I listened to Jenny talk about the light at the end of the tunnel and seeing that light. For me, the only light I see is Heaven- where I know Andrew will be able to call my name, be free from pain, tell me that he loves me and play ball with his daddy. That is the only thing that I can look forward to. Not a bad thing, but I am praying for days on earth that I can look forward to.

Funny thing today- his pediatrician called me and we talked for a bit. I think she likes us because she hasn't had too many kids on the spectrum. She called to tell me that the FLU vaccination is in- ha, ha. She stressed how important it is that he get it. I know she thought that I was crazy but I told her we were not interested and that he wouldn't be receiving any vaccinations until I felt that they were safe for him- how about never? Doctors won't let up about these , but if it were their own children they sure would feel differently.

Sunday, September 16, 2007

The Thoughtful House

Updates:

Andrew had his sleep study and EEG on Thursday night. I went with him and stayed the night. It was a rough night of sleep. It will be interesting to see the results. He had 27 electrodes on his head and 5 or 6 on his body. He also had a nasal canula in his nose to check oxygen levels. He tolerated the process of putting them on as long as he was watching Baby Einstein- gotta love those DVDs and the music that they have. We arrived at 7 pm but the process of putting the electrodes on lasted till 9:45. They woke us up at 5am to get ready to leave, so he didn't get the best sleep that night.

We have been in contact with the Thoughtful House in Austin. This is a center that does biomedical research and intervention to recover children from Autism. They have really given us some hope. I had an hour phone interview this week, which was intake and then Andrew's case was presented to all of the doctors to see what the next step would be. They suggested an aptmt with their nutrionist which will be on Oct. 4th? I think. After this aptmt we will have an aptmt with Dr. Jepson. He is very well known in the field with Autism, has a son with Autism, and has written a new book- Changing the Course of Autism. My Dad bought us a copy and has been reading his copy. He said it is soo good and provides lots of hope for our children on the spectrum. I am excited about this, especially since Andrew seems to be getting worse. Their website is www.thoughtfulhouse.com

Andrew has been coughing for 3 weeks, we started thickening his liquids again to honey. Obviously the SLPs who were so rude to me this summer didn't know what they were talking about and did a horrible job on his swallow study- $90 dollars down the drain. It would be fine but we know he is in a lot of pain- crying, coughing, crying some more. It's frustrating and even though we don't want him on any meds that could potentially slow his development even more I have to take him a pulmonologist on Monday to get him checked out.

Yesterday he had a great day. We started out at Sea World where he smiled and stared at all of the fish in the aquarium and relaxed in the stroller. We then went to Gymboree for his cousins, cousin- Sophie's 2 year old birthday party. He loved it! This was the coolest party. All of the kids ran around jumping, running and climbing on things, and dancing to music. The kids had a blast! After a nap we hung out with the Altamirano family and relaxed. What a great day!

Tuesday, September 11, 2007

Trip to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

by Emily Kingsley

I thought this really captured what we have been feeling lately. Felt and I have looked at ourselves recently and said "I'm not sure it's Holland...kinda feels like Juarez, Mexico."

Sunday, September 2, 2007

EEG and Sleep Study

Andrew will have an EEG and Sleep Study on the 13th at Methodist Children's hospital. We will be able to get results from this on the 24th as well as get a severity rating from the ADOS and CARS- Autism Rating Scales.

Feeling Down

Well it's Labor Day weekend and we are spending it like almost all Labor Days in the past years, doing nothing. We did have the opportunity to go to Red River with the Mounce family but we weren't able to communicate and get our act together to go. Very disappointing for us and for them. I know they were looking forward to seeing Andrew. It would have been difficult for us but it would have been fun and good to see everyone. And we love the outdoors.

Lately Felt and I have been feeling pretty depressed and down about life's situation. Things are sometimes hard, it just makes it harder because this is not what we expected in life or for Andrew's life. Andrew has been sick the past couple of days. He got a cold from daycare and you know how that goes, coughing, runny nose, irritable child. It is like a repeat from the beginning of last school year. He wakes up in the middle of the night coughing, and then ends up vomiting. FUN!! I love waking up at 2 am to be bathing Andrew and washing sheets. He is worth it though, I love that little boy! Although he was cleared by HealthSouth from the swallow study for liquids, Felt and I feel that he still has dysphagia and still needs Vital Stim therapy. We aren't sure if we should go back to honey thick liquids, nectar thick?? It's frustrating. I feel like all of those aptmts this summer for therapy were for nothing. I have an aptmt for him to go to a pulmonolgist but really if it is dysphagia there is nothing breathing treatments or a lung specialist can do. Since we can't go back to HealthSouth he is on the waiting list at Warm Springs Rehab. It stinks that they have morning aptmts available but I can't take him because I am at work. Why is everything for these kiddos waitlisted? I don'tunderstand 1 in 150 kids are diagnosed but there is hardly any services for them. I know God is in control but I have to admit that it is hard for me trust and have faith in him. The other night I started crying and couldn't stop as I was trying to get Andrew ready for bed. I have told myself that I am not in the grieving process anymore but I think it is cyclical and I haven't really let myself have a good cry. I don't like to be down about things because it does nothing to help Andrew or us, but sometimes it's hard not to feel this way. I was talking to our PPCD (Preschool Program for Children with Disabilities) teacher about this process. She has a son with Autism that is in middle school. She informed that it doesn't get any easier but that we learn to deal with it better. That was hard to hear.

This week will be difficult for Felt. I will be in Austin Tues.-Thurs. for a workshop and he will be in charge of getting Andrew ready for school, dropping off, picking up and doing dinner and bedtime. Shouldn't be too hard though, I do this everyday.

Please continue to pray for us during this time and for Andrew that we can get him the best doctors and therapist to help him.

Monday, August 20, 2007

Updates

OK- so I haven't gotten around to posting pics yet. I'm kinda slow. Last week was hard for us. After the aptmt with the neurologist we went and saw the DAN doctor. What a waste of time!! She told us she has a waiting list and that she couldn't help us. She recommended the diet (glutein and cassein free). Some of the research we have read says that it helps to regain a child's attention and their level of awareness. Andrew has been on it for several days. He has been really irritable and cried a lot. It reminds me of someone going on the South Beach diet or Atkins diet and the pain they first experience. He is now getting occupational therapy, which I am not to sure about. Why am I so skeptical of people trying to help us? I just don't understand why they think that the Greenspan theory, or Floor time model, works. It's a child centered approach where they follow the childs lead in therapy. Whatever he does the engage in the same activities. Sounds great but I did this in grad school with autistic kiddos and it didn't do much for them. Let's face it- the whole world doesn't revolve around Andrew and we don't need to start acting like it. I'm looking into ABA (applied behavioral Analysis), the research is much better with this and discrete trial training than the Floor Time Model. I don't know, it's all pretty overwhelming. I make calls, leave messages, check the mail, and wait for people to respond so that we can get him into the right programs and therapy. The other night we noticed that he seemed to drift off more to his own world and we couldn't get his attention. Sometimes we feel like we are losing the real him, and it's heartbreaking. I really feel like this is a disease and not a disorder almost like Alzheimers. It just takes over their whole body. I am hopeful because he is still so young but it is very hard when you see constant regression. We will always fight for Andrew and we want nothing but the best for him. Please keep him in your prayers.

Andrew went to daycare today. I'm not sure how things went but when I picked him up the other kids were all acting like big people and trying to help Andrew play with toys. It was kinda cute and they are all precious. I know there will be a day when the kids at school won't be this sweet, but for now it is cute. His teacher said that he did not take a nap. Yikes!!! Let's hope he can transition better tommorrow.

My first day was ok. The staff at my school are great. They are all very family oriented and I am really starting to love the SA culture here- everyone hugging to greet each other. The best part of my job- I get to leave at 3:00- YEA!!! That has never been the case at any of the 6 schools I have worked at. I'm just not sure that I will make it at 7:30 every morning. Let's hope the slow paced culture of SA will generalize to morning time at school. Right?

Tonight has been crazy at our house. It all started when I was watching Super Nanny and I heard a noise coming from the laundry room. The dog ran to the door and it sounded like an animal. Felt went into the garage and found a racoon. UUGHH! Gross! He said he tried to get it leave, but since we have so much crap in the garage it wondered around in our stuff. He placed our trashcans in the drive hoping to get it to leave but I'm not sure that worked. This would be the time when we need a gun, but we still live in the city limits. I am so grossed out by this that I would rather not go in the garage or laundry room for a year or more. Am I crazy?

Tuesday, August 14, 2007

Not a good day

It has been a while since the last post. We have been busy setting up the house, unpacking boxes and trying to schedule therapies. What a mess! Most of the mess (boxes) were sold to a guy in town for fifty dollars. We are really enjoying the house. It is so nice to have people over and have room for them to sit down and talk. After crying three days from being disoriented Andrew is now enjoying it too. He loves going in and out of rooms and attacking our Maddie dog. Too bad we sold the bubble wrap because he really loved swinging that around and knocking things over.

Today was not the best of days. Andrew had an appointment with a nuerologist here in town to talk about developmental problems. Dr. Rotenberg was very nice but very frank and after going over case history and observing him he listed or coded Andrew as PDD (Pervasive Developmental Disorder) otherwise known as Autism. This was really hard for me to take. My dad came along to help with the aptmt and didn't seem quite as upset as I was. We all knew that things were leading up to this diagnosis but it is still so heartbreaking and seems so permanent. It's not like he is dying but I am really grieving the loss of a normal childhood for him. For a long time I was holding out hope that this was just Sensory Integration Disorder, or Developmental Delay and not truly Autism. I can remember back to my first couple of years of working with students with Autism and saying to my self 'God please don't ever let that be me, and please don't give me a child with this'. And he has, and I am angry about it. I'm past the denial stage and definitely in the anger stage. Why me, Why us? What did we do to deserve this? And why is it that 1 child in every 150 children has Autism, an epidemic but yet we have no real answers as to what is causing this.??? Any way, we have follow up appointments for an EEG and sleep study, and after that he will go back for Autsim rating scale to look at severity and other issues.

Yesterday I had to go the obgyn doctor for an annual visit. It made me soo sick to my stomach to see all the expecting moms and dads sit in the waiting area. I remember how special a time it was for us as we waited too and dreamed about our baby's life. I sat looking at these expecting parents feeling jealous that we were not somehow stagnate in that stage. I hope and pray that none of those people have to go through what we are going through. Things just feel shattered.

I am very worried about next week. Andrew will be fulltime in day care again and I know he will stick out and defninitely be the high maintenance kid. What am I going to do? I can't really tell them 'he is PDD' but then again they can't discriminate can they?

After seeing the doctor today the nurse looked at me and said 'have a nice day.' I thought to myself a nice day? - this a bad day.

Please pray for us.

Friday, August 3, 2007

One more thing...

With all of the good things happening I forgot to mention that we are down to one car. My car has decided to shake so bad that you can barely drive it. What fun! If anyone knows of a good mechanic down here please let us know. Felt just loves being driven to and from work.

Moving Day

Lots of exciting things have been happening around here. Last week Andrew received a comprehensive evaluation from Easter Seals the Early Childhood Intervention. It was determined that he would receive 2hours and 15 minutes a week of therapy from them in the home or daycare center. He will get 45minutes of speech therapy and 45 minutes of occupational therapy and 45minutes with a developmental teacher. Isn't that great? I was so pleased with them and his teacher Ms. Jackie has already come out this week to work with him. He had a great time with her and she was very sweet at offering suggestions to work on sensory needs. He will continue to get 2 hours a week of Vital Stim therapy/Speech therapy at HealthSouthRIOSA until I go back to work. Lots of work for the little man! He has an appointment next week with a DAN (Defeat Autism Now) doctor to look at a Cassein and Gluetin free diet. Although it might really help with his development it will not be fun trying to make two different meals at dinner time.

We closed on our house Wednesday and I just picked up the keys an hour ago from the realtor. I found out from our moving company that tommorrow is the big day for delivery. We finally have a house again. !!!!! Super exciting!! Andrew has already enjoyed running around and climbing on the fireplace and falling ofcourse.

Although we are super excited, we are a bit sad not to be living with my brother and sister-in-law. We have had fun and have really enjoyed getting to bond with our adorable nephew. What a blessing family is! I promise to put pictures up soon and will email out our new address.

Monday, July 23, 2007

Resources- YEA!!

After a relaxing weekend in Carlsbad we are back to some craziness. The appraisal on our house was completed this morning and we hope to close on it by the end of the month. Although we feel very comfortable at our brother and sister-in-law's house, it will be nice to have our own space again and have our Maddie dog back.

I contacted a parent of a student that I had worked with years ago in Mesquite. I was hoping she could be a go to person for help with resources for Andrew. She and I talked for about an hour today and I can say that she is an answer to many prayers. She sent me a list of resources in San Antonio and was very comforting to talk to. She can definitely relate to what we are going through and is pointing me in the right direction of where to start with therapies and doctors. After talking to her and reading lots of info online I am wondering if we are heading towards a diagnosis of Autism. You would think that after all these years of working with children that I would know if Andrew had this disability. It is very different being his Mom and it's even harder to work with him doing speech and non-speech tasks that I would do in therapy. Through one of the resources that Carol gave us I was able to contact Respite Care about possible day care. I'm not sure but I think the center is located downtown so that might not work out best for us but I am feeling more confident that we will find someone or someplace that will watch him while we are at work.

Friday, July 20, 2007

July 20, 2007

Wednesday was our 4 year anniversary. YEA!! Both of us feel like it has been a lot longer. We celebrated by having dinner at the Grey Moss Inn, a quaint little restaurant located in Grey Moss, TX, just outside SA. It is on a scenic drive in the country and the food was very good. Felt said it reminded him of the Cotswald in the UK. If you ever come this way you should definitely check it out. www.grey-moss-inn.com

Some people have asked why we moved to SA and what we are actually doing here. We moved here for family and jobs. Andrew was pretty sick this past year and we knew that we needed help and a support system. Our family has tried to help us out as much as possible in Dallas but it makes it easier with everyone being here. We are enjoying getting to see our nephew- Jackson and spend more time with all the other family and extended family. Felt works for Southwest Research Institute as a research Engineer in the automotive devision and I will be working for Northside ISD as a speech therapist.

With all the traveling and moving this summer we are in for 2 more trips. The first will be this weekend to Carlsbad, NM for a friend's wedding and the second will be later to Red River, NM for family reunion. Well, gotta get packing- I can't forget the Elmo and Baby Einstein DVDs

Tuesday, July 17, 2007

We're Here

We have been in San Antonio for two weeks and are somewhat adjusting to life here. Our sweet brother and sister-in- law have given us space and time to get ourselves together and find a house. After looking at houses for over a week and letting Felt torment realtors with questions we have an offer on a house close to Sea World and hope to close in a couple of weeks. I am not crazy about the house but I think Felt is in love with it. It has 2600 square feet, a large deck in the backyard with a great view and a hot tub. Yea!!! It has lots of space for us and is in good shape for being a 20 year old home. It is also 10 minutes from both of our jobs! We are really excited about that.

Andrew has been going to series of apointments- therapy, evaluations, new doctors, etc. Lots of fun for him! He loves being the center of attention. We have him scheduled to see a neurologist in August and the earliest we could get him into a developmental pedi was in February- yes, Feb., can you believe that? There is such a need for help with kiddos like Andrew. We still have no answers as to why he has regressed in development. His latest speech eval here in town was definitely a hard one. The SLP (speech therapist) made comments like "he had to have been born with something, some condition" and "You haven't taken him to a neurologist before?" I left there feeling guilty and angry. She said a lot of things that I didn't want to hear but that needed to be said. Felt and I are both having a hard time dealing with all of this and the move. We feel frustrated and just heartbroken for Andrew. Although he is not in any physical pain we want the best for him and we want him to be able to play like other kids his age. It's just a hard time right now and it's hard to explain to other people. Even situations where Andrew gets excited and needs deep pressure and will come to someone grab their arm tightly and clench his teeth- it can be a pain trying to explain to each person why he is doing this.

Please pray for us this week. Pray for good and knowledgeable doctors and therapists to work with him, pray for peace with this situation, pray that the house will go through, and pray that God will provide financially for all of this (especially since insurance only covers 20 speech therapy sessions a year). Although I have not updated this blog since Thanksgiving I plan to be writing a lot more. Stay tuned and thanks for everyone's support.
Brandi