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Mommy's Journal

Jan 29th, 2005 First entry

Well I have been trying to get this journal going but havent had the time, so here goes! This site is really making me angry ughhhhhhhhh I updated alot about a month ago and now there is 3 pages on my site that I cannot edit, the whats new page, the autism page, and the growth hormone page,so I will be deleting them and redoing them I guess, yippee NOT! they are still viewable but I cannot edit them to give updates!! driving me crazy! anyway.   

Alana is doing really well with the horseback riding she just had her 4th ride and shes loving it now, its a bit warmer than it was before I think that helps alot! She has rode the horse proof that is pictured on her first ride under whats new every time. Hes pretty big and makes her look so small lol.

She has an appt on tuesday for her ADOS testing which it to find out where opn the autism spectrum she is and to guide therapy, shes already been diagnosed autism spectrum but we will find out the specific diagnoses since there are many on the spectrum.

She is doing well with her shots also, got her sixth sticker and we mailed off for her toys r us gift certificate.

We had a follow up on her ear TUBES in and her adenoids out and tubes look great, they did a behavioral hearing test and she passed it, before the tubes it was inconclusive because she didnt respond but we dont know whether that was hearing or just a bad autism day, her hearing was normal at 15months so we dont think it was all hearing, but regardless her test was normal this time she responded to the ladies voice and most of the beeps, last time the lady was screaming and Alana stared in space!!!!!!! 

Iam starting PECS (picture exchange communication system) communication system with Alana again..., we did attempt this about 6months ago but it was small pictures that alana was to take and give to us to request something, she would just play with them, she likes paper. This time we are making the pictures the size of a movie case or larger and putting them in a binder with the plastic covers so she cannot take them out, eat them or whatever. And this time I am going at it full force, I am not backing down like last time, I have begun to print pictures but my color ink ran out, I ordered some more today so I can get going with this!

I mentioned before that we are trying to get Alana into the TEACCH program for autistic children and we just found out they dont usually take until 4yrs of age but they are coming to observe Alana on the 10th at her school to see if they may make an exception since she is so far behind. Hopefully they do! The earlier the better!

We have an appt in March with the DAN Dr, Dr.Stobbe in SEATTLE at the ASTAR center to have some testing and talk about therapy, I am trying to get a home ABA therapist but it is expensive and I ahve yet to find a therapist, I have spoke to one but doesnt look like it would work out, I hope it does but I dont think it will :-( . DAN stands for defeat autism now and he will be doing testing to see if her diet, yeast overgrowth or metal toxicity plays a role in her autism.

I have the enzymes for enzyme therapy its is called peptizyde Ive had it for over a month but she was sick and testing and all that I wanted her to be up to par for, and the enzyme can have some flu like symptoms when starting due to cleaning out the GI tract, after her ADOS testing Tuesday we will be starting the Enzymes so I will let everyone know how this goes as well!

As for Kaila,she is doing well we are trying to break her from the bottle she just isnt having it! but she has started to drink some cows milk from the bottle though but she is still on formula as well per her pediatrician, she is still so tiny only 15lbs10oz and 26inches and she is 13months old. I am going to ask her pediatrician about growth hormone deficiency testing, I may be crazy but I think it would be wise to check! If that is normal than I will rest on any more testing,unless it gets even worse or something else arises.

Okay I think this is enough for one day, its more of a catch up not a journal entry since I cant update the other pages of the site and further joural entries will be like reading radio instructions if you are updated on everything going on here. If u have any questions u can email me anytime or sign the guestbook and ask your question in the comment box, be sure to leave your email address too! I will try to give a journal entry at least once a week, I want to more but 2 kids and 2nieces here all the time as u know im sure keeps me busy busy, so check back for the next entry/ies!

Crystal-Momma to Alana and Kaila

 

February 1st, 2005- Journal Entry

 
 Well Alana had her ADOS testing today, and she was actually having fun at childrens this time lol. We were there from 9am-3pm so fun! Oh and I got in my car to leave this morning and guess what the darn battery was dead! because I had cleaned my car the other day and left the door open to let the shampooeed carpet dry and it drained the battery, so Boni had to hurry up and come home from work and give me jump.
 
Anyways the lady played with her and asked me 5million questions and observed Alana playing, etc. for about 2hours and the test is a scoring type test, 7is the cut off for PDD(pervasive development disorder), 12 is the cut off for Autism, which is all autism including aspergers, and the higher your number the more severe the autism at that particular time in the childs life, well Alanas score was 23 which is moderate-severe Autism, not aspergers which I already knew since she doesnt speak.
 
She reccomended the TEACCH program also, and was glad to hear that someone was coming to ALanas school the 10th to observe her to see if they will make an exception to start Alana at 3 instead of 4.
 
Than we had lunch and walked around a bit before we seen the neurodevelomental dr, and she pretty much said what the other said, and I asked her for some numbers for therapist for inhome behavior and she gave me a few numbers and is gonna mail me more. She also mentioned that Her and Alanas ENDO dr gunther (both at childrens) were thinking of writing a paper on autism and turners now that they have 3 patients with both conditions, I have talked to one lady, dont think its one they know but I met her online and her 19yr old has TS and autism. and said they may contact me later to tell me more about that.  I also asked to be put in touch with their 2 other patients parents with TS and autism and she is sending me a consent to sign so they can give my info to them. 
 
Anyways so now its on to working on therapies and treatments even more. which we see antoher dr, dr.stobbe in march for to do a bunch of lab work to look at biomedical treatments I have mentioned before. 
 
Kaila had  fun day with my friend babysitting her so I could concentrate on Alana. I asked about her too and she thinks I should get her into early intervention school like Alana and when she hits 15months, she will be entered into a study at the university of Washington for younger siblings of autistic children, to see the effects it may have on them and to see if it may be genetic since it isnt uncommon to have more than one autistic child. 
 
Oh yeah we are starting the enzymes tomorrow so look for an update!!! Anyways im done ramblin been a long day and im gonna rest now!
 
Crystal-Momma to Alana and Kaila