Thursday, January 19, 2006

I am just getting around to posting pics today. It's been pretty hectic around here - all the more reason for me to be sitting in front of the computer eating a cookie bar!

The pretty young lady in this picture is Nikki (no, it's not me - I wish I looked that good - you will not see many pics of me and there's a reason why LOL!). Nikkie has worked with Joshua doing behavioral therapy since he was one year old! She went on to work with both the boys, as well as Rachael (Rachael loved to play with Ms. Nikki and the boys - she thought of the sessions as hers, not Jacob's or Joshua's. Nikki was always so great and let Rachael participate. When Nikki came to the house Rachael would say "bye bye Momma", and go to work.) Nikki graduated with her Master's in Speech Pathology this past December. She moved to Austin, and is working as a speech pathologist for Early Childhood Intervention (ECI). We miss her terribly, but wish her the absolute best!

(sniff, sniff) In other news, I took Abby to her 9 mo well visit last Thursday. The news was not good - she has went from the 25 to 5th percentile in weight, she is also losing muscle tone throughout her body. What does this mean? Low tone is a neurological problem. Her brain is not telling her muscles to fire. Hence, her limbs are the constistancy of Gumby - you can move her arms and legs any which way because her brain isn't communcating "hey, I'm not supposed to be in this position!" She wasn't bearing any weight on her legs - she wouldn't lock her knees to stand up - just went floppy every time you tried to stand her up. Sooo... in come the specialists - the OT's (occupational therapists), the neurologists, the g.i. doctors, the allergy/immunology doctors, the chiropractors, ECI workers .. did I leave anyone out? I'm sure I did. What can you do?? Pray, pray, pray hard for baby Abby. She is such a little sweet baby. Jacob went this same route (and had about the same timing, give or take a month) before he regressed and went on to lose all this skills - eye contact, speech, socialization. In fact, low tone is pretty common in kids w/autism. In makes sense.. these are the first signs that something is not right in the nervous system.

I have been praying every day for God to send people into our lives who can help Abby, and to hold me tight so that I can deal with the outcome - no matter what it is. Good news - Abby started working w/an OT this past Monday. Sue worked with the boys, back when we had some money. She is a wonderful OT. She showed me some exercises to do with Abby, and Abby is already bearing some weight on her legs! We plan to keep taking Abby to Sue for weekly cranial sacral (sp?) therapy, and she will informally monitor Abby's progress. We are waiting for an appt with ECI - can provide OT, PT and other services in the home (providing Abby qualifies, which based on the seriousness of her delay I think she will). I'm taking Abby to a pediatric neurologist Feb 2nd - Deren's birthday! - so say an extra prayer for us that day. I'm still dragging my feet with the g.i. doctor. I had such a bad experience w/Jacob. He was having horrible gut issues and I took him to a g.i. doctor in Dallas that came highly recommended. She had a nurse come into the room and ask me to leave - said she doesn't treat autism. So I took Jacob to the allergy/immunology doctor we had just started seeing, and Jacob has improved so much - he used to be doubled over in pain everyday. So what I thought was a horribe experience turned out to be a blessing. But I still can't get too excited about dragging Abby into a g.i. doctor. We see the allergy/immunology doctor next week, and I am hoping he will agree to take Abby on as a patient as well.

Other good news: I started a Beth Moore bible study at church last week - didn't get to go this past Tuesday because Rachael has a nasty, nasty stomach virus. I am loving it! And God, it is such perfect timing! Amen. I don't want to 'go it alone' this time around. When the boys started losing all their skills and having all their diagnoses and problems, I thought God had cursed me - I'll just go it alone. Man, was that ever a mistake. I kept falling further and further into a pit of anger and self- pity. I'm still trying to dig myself out of that pit. It's so easy to say 'oh life is going good. I love God, He loves me, la la la..' But when the stuff hits the fan, so did my faith in God. This time, I am determined to hold on and hold on, and hopefully become a better servant in the process. Well, that's my sermon for the day. For copies, please send donations c/o the "autism club" - you know the address LOL!

No comments: