Trip to Texas Children's Hospital

We are back home and racing through another week. Our trip to Houston was a good one and we got lots of good information from the Rett Clinic. Dr. Neul, Andrew's neurologist, says that he is one of 6 or 7 boys in the world with true Rett Syndrome. Can you believe that? He is such a special angel! He gave us some good information regarding therapies and prognosis for Andrew and wanted to include him in a research study. Andrew's GI doctor wants him to gain half a pound each month. He is too thin, but we feed him all day. Go figure! One big word we learned was retropulsion. What a cool word. This is the swinging back and forth motion Andrew does with his upper body. Andrew was such a trooper and even got over the fact that the dentist was an absolute jerk to him. He didn't even aknowledge Andrew and referred us to other dentists here in town. I will be writing a letter on this one. What a wierdo!

I am officially Vital Stim certified and true believer in it. I am planning on purchasing my own unit for Andrew as I believe it can and will help him again with swallowing. My first patient using it will be today.

We are still fighting the everyday battles with having a child with a disability. I have been on and off the phone with the insurance company and with medicaid this morning. We have insurance as a primary and medicaid for Andrew as secondary only based on his disability. Even though we have this I can not get him speech or physical therapy. I am frustrated. No one takes our insurance for home health therapy and none of the clinics listed as providers work with pediatrics. What a mess! It's almost as if we should have never gotten insurance for him, but then he wouldn't get ABA. AARG! The fight is on for this one! I have cried and now I need to press ahead.

Some tough moments for me as mom this week were reading a past favorite book to Andrew before bed. The book is called Hug and this was Andrew's favorite book from 12 to 18 months. It's about a monkey that goes around the jungle watching all the other mamma's with their babies hugging, and the monkey comments 'hug' on each page. Andrew's favorite parts were when the monkey cried and when he saw his mom. "Mama, Bo-Bo.....hug." Andrew sat with me but didn't look at the pages and was more interested in wringing his hands than anything. That was a hard moment for me. I cried for a good while and realize that although I wouldn't trade this Andrew for anything, I miss the little boy that we once had. Looking back at photos of him as a baby- it's just not the same child and I really miss all the things that he could do- even the smallest things like hold the remote in his hand, and turn the pages of a book.

One other thing that is bothering me this week- Dr. Neul says that 1/3 of children or girls with Rett Syndrome, now including Andrew, die from an unkown cause. That means that it wasn't complications with scoliosis, pneumonia, or a heart condition. Unknown! I put this out of my mind until Felt brought it up this week. It terrifies me and I am praying for peace and to let that thought go.

Prayers needed

I didn't want to post about this but I know I need to. We had an ARD on Friday and Andrew's one on one aide was removed from the picture. The special ed coordinator made a lot of great arguments as to why he does not need one. I don't want him to have an aide unless necessary and I didn't and still don't know what to feel. I discussed our frustration with a lack of progress being made in school and they suggested summer school as well as a teacher conference regarding goals. I left the ARD crying and feeling like somehow I have let Andrew down, like I didn't try hard enough for him. Ofcourse I could call an ARD meeting anytime and argue with them, I just struggle with knowing if he really needs the assistant. They assured me the ratio in the class will still be 1 teacher or assistant to 2 children and that does make me feel good. We are leaving at 4 tommorrow morning to head for Andrew's aptmt at the Blue Bird Rett Clinic in Houston. We will be their for 2 days for aptmts with neurology, GI, and dentist. Maybe they can help me see things clearer and I just pray that they will be able to help us as I sometimes feel like all the aptmts don't tell us much. As for the job situation, my current position is going to counter offer, so I still don't know what to think, regardless of how much either is willing to pay me. Money isn't everything and I just want Andrew to be ok, which I know he will. Please pray for peace in both situations and for some rest, lately I am feeling a little stressed. I will try to post more when I get to Dallas for my training, and thank you Dad for taking Andrew all the way back to San Antonio, you are the best!

Being a Speech Pathologist

When I started out 7 years ago as a therapist I would never have imagined that my life would be so intertwined (is that a word?) with my profession. I have heard time and time again "oh- than you really know what to do with Andrew". As if it makes our situation much easier. It doesn't, but it has helped in a lot of ways. I have had the knowledge base on developmental disorders, theories of therapies, and understand what strategies should be implemented. Some things have been easier for us and some things have been harder. One of those being the knowledge of what Andrew needs in terms of therapy and how to demand from agencies and schools that he receives the proper treatment. I still have a hard time with comparing him to other children that I service. Last year when I started working part time with home health I got a patient that was 1 month younger than Andrew. I immediately started comparing gross motor skills, play skills, etc. Not really healthy for me to do but I still have a hard time with this as all of my patients are between the ages of 6 months and 4 years. It has helped me professionally with families to be able to relate to their situation, make referrals to doctors and specialists and to tell them what has worked for us. There was a time last year that it was all too much, and I wasn't sure if I could continue being an SLP. There was a lot of sadness for me and for Andrew and all that he lost. Part of the grieving process I guess. But working with my patients made me feel even more sad at that time for all the struggles that they and their families faced. I guess I have gotten past some of this sadness. Just the other day I had a new patient -2 years old, hasn't been diagnosed with Autism yet. After working with her for 5 minutes I was able to get this sweet little girl to sign more to request an activity. Her parents cried as she is nonverbal and has no way to communicate with them. This one session made my day and made me remember why I am a speech pathologist. I really do love my job and I love my patients. I feel very blessed that their families let me in their lives and let me enjoy them every week.

I was unexpectedly offered a position this week with an Early Childhood agency here in town. It is actually the Brighton agecny that came and saved the day for Andrew with the last 6 months before school started. It would be a full time position and the pay would be a lot more than I make now. Money is not everything to us but it could definitely help out. Please pray for us as we make a decision on what is best for our family. Our top priority is Andrew and we are thankful that his new attendant is really working out well.

1 more week until Vital Stim certifited! Can you tell I am excited??

Care hitting a record low

For the first time in a while I cried today. After I picked up Andrew from school I waited for an attendant to show up to care for him so that I could get back to work. We have had the same attendant all week who has been wonderful and expected her to show up again today. Nope, didn't happen. Instead I opened the door to a 50 year old woman with no teeth, and cigarrette smoke wreaking out of the pores of her skin. No teeth, can you imagine....I mean really. She was wearing skin tight workout pants with a scrub top which didn't go well on her overweight body. I was immediately disappointed and left wondering what to do about my busy afternoon schedule. After showing her around and going over everything I sat for about 20 minutes trying to inhale a quick lunch. She was really loud and flamboyant and started apologizing to me for smelling like smoke. She said she sprayed down with Febreeze when she got out of the car. What? Is that even for your clothes? I thought it was for furniture, maybe I'm wrong. Then she tells me she lives with a 33 year old man, what??? What would a 30 year old man be doing with someone with no teeth? I know my mother is thinking right now to hold up, and be the Christian woman that I am, but folks, really? Would you leave your precious child with such a person? Once she started talking she didn't stop and our two dogs were going crazy smelling her- which they never do to people that come over. Maybe she was smoking something else.....I don't know. I quickly got in the car, saw one feeding patient and then came home. I had already called the agency to let them know that I didn't want her to return to our house again and that the cigarrette smoke was unacceptable. When I returned home she was on her cell phone talking very loud. Apparently the agency had already called her to let her know I had complained. She started again with the apologies and told me she had been smoking since she was 11 and was trying to quit. I told her "wow, yeah, that must be hard." In my head I was thinking - what 11 years old, that's like 5th grade, where was your mother and what was she smoking? And how is that my problem? ARGH!! I hope God will forgive me because I lied and told her my her patients canceled and that I was taking Andrew to the zoo. Honestly, I didn't know what to say to her. I felt so sick to my stomach leaving Andrew here with her that all I could think about was getting her out of the house very quickly. So, now that I have canceled the rest of my patients I am actively looking for that special angel to take care of our angel.

The Poll

I had to add a poll to the site. My brother-in-law Gabe, is getting promoted to Major in the Air Force in March. So, we are headed to Vegas for 3 days to see him and attend the ceremony. Felt and I are going back and forth as whether or not to take our Drew-Drew. What do you think? Thanks for the opinions, we need to get our tickets soon.

A Yo-Yo of Emotions

With the start of a new year Felt and I decided to change our health insurance company to a self funded plan. House bill 1919 was approved last year in Texas so that all children on the Autism Spectrum could receive speech therapy, occupational therapy, physical therapy and even applied behavioral analysis (ABA) at unlimited rate as long as you have a self funded policy. The disadvantage to doing this is that we now have an HMO. ARG! So, we have to see a PCP-primary care physician before going to any specialist and Andrew's great Pediatrican that we just found 6 months ago does not take our new insurance. It feels like we are starting all over again with looking for a doctor, one that won't hound us about vaccinations because we have chosen to no longer vaccinate him, and one that will be willing to learn about Rett Syndrome. This is not fun because I have to get someone in the next week so that we can keep our appointments at the Rett Clinic at Texas children's in February.

However, one good thing about the change in insurance is that now Andrew can get 2 hours of ABA every weekday for a year!! I can not tell you how excited we are about this. I know it will be alot for him and for us to get used to but I know that it definitely made a difference when we did this with the Early Childhood Intervention. And he we still have the same therapists that he did from before.

As for school- it seems like they are just babysitting him. I hate that! I don't get any info on what they worked on, did during the day, etc. Every day the teacher brings the kids out and tells each parent "he did good today." What? A good day to you might be a bad day to me. What is a good day, really? I was also informed this week that his aide was pulled to another room and that there will be a sub or someone else to cover until we have our next ARD in mid February. Yes, another meeting to discuss whether or not he needs an aide. I thought this was over but I guess the battle on this has just begun since the district has a hiring freeze and wants to reevaluate every 30 days . I really want someone who can be consistent with him. I think we have some ammo for the meeting in that all of his goals on the progress report stated no progress. Really, no progress? I know Andrew is a lot lower functioning than some of the other children in the class but I also know he can make progress and was making progress before he started school.

The changes in aides has also carried over to home. The person that was hired to be his attendant at home never showed up this week and he had a different person watching him everyday. I usually go to work after they arrive but it took me a lot longer this week- explaining Rett Syndrome to each person, talking about his diet, schedule, dislikes, likes, and trying to warm up and trust this person with my precious angel. It was hard. I hope things get better with this situation too, and I guess it's tough knowing that we will always have these problems.
Andrew has to be so confused and I am so thankful that Rebecca, his teacher from Early Childhood Intervention, watches him on Fridays. The moment we get to her house he is smiling. Yesterday one of her daughters asked if she could marry him. Too cute!

One more yea thing- The agency that I work for has decided to pay for Vital Stim therapy Certification for me. YEA!!!!!!!!!! I am super excited as I have wanted to do this for a long time, but it costs a lot of money. I get to travel to Dallas next month and take the 2 day course, take a test and then become certified so that I can help children with dysphagia. I know this therapy works and we got to see first hand with Andrew. I just wish it would have worked longer for him than 6 months.

Ok-enough for now we are off to have a fish fry from the 30 pounds of fish that Felt caught in the gulf a couple of weeks ago. Too bad I don't eat fish!

Pictures- FINALLY!!!!

I have meant to post pictures for a while now but wasn't able to do so till today. So Voila! Here is our newest member of the family- Lucy. She is such a sweet girl and has gained 11 pounds in 3 weeks. She is getting healthy and we are soo happy to have her.

Just a shot to show you how big she really is. Sometimes we forget until we have other people over to remind us.

And here are the pictures from the Christmas Cookie Decorating Party. Can't wait for the next one!