Wow has the time gone by fast!! My angels are getting so OLD! Well I am 32 now, so I guess I am the old one.
This blog is for my girls, I want to document things for my angels to let them read one day and think back wow that happened? This is a more intense writing than most but I want to document to remember.
We had our yearly meeting on Baili on 4/22/11:
Baili has progressed so much since last April it is amazing! Last April all she did was sit with her legs in a V shape. Yes she did many other things but I am talking about being mobile or PT. Now she is very mobile!! We did have a tough meeting. Well I thought it was tough being the Mommy. Baili needs to walk by age 3 or her Developmental Preschool will put her in a wheelchair. She will be picked up 4 days a week for two hours a day to go to attend an inclusion/developmental Preschool in the short bus. Yes the short bus. I was stunned. They won’t carry her or put her in a stroller. So she will be wheelchair bound if she doesn’t walk by age 3. Also insurance won’t pay for one. FUN TIMES! I probably cried during most of it. Some of her current therapists were there and so on…. We fired DSI for many reasons and getting a new DSI and SPEECH and a new RESPITE care provider too. So we can have most therapists at my home at night or Sat with me and at Josh’s not at daycare. We need to work on what they are doing with her and at daycare we have no clue. Her respite care is back on May 6 she will have 720 hours. Respite care is basically a "highly paid babysitter with no degree." Let's be honest here people. But I am very thankful she has it. Don't get me wrong. However I will only use our new "Gail" while I am home for helping Baili practice walking, talking, reading, playing, etc. Basically a playmate assistant for Baili. A few nights a week with dinner and baths etc is a lot for a single Mom and one with special needs. This will give Baili the extra attention she not only deserves but needs! Love my kids!
So starting now we have 7 full months to get her walking. I know we can do it. She does furniture walk a little bit. Her main thing now is pushing her little chair around the house while walking while pushing the chair!!!!! Far too! She also crawls, (I call the dog crawl up on all fours a lot). So like almost walking just not standing. She also stands and plays at her kitchen a lot too for long periods of time. Long periods. My opinion she is very mobile. She does all the stairs up and down for months now, speed crawls, and can get off the couch all by herself at my home and Josh’s.
Starting when she is 3 she will have Preschool 4 days a week for a few hours a day. The “short bus will pick her up and drop her off.” She will have “academic therapists” at school starting in December than all five therapists at home with us still so double therapy. Double therapists. Since they are very different at home and school is what they described to us. Anyway it is a lot to deal with. They say once her gross motor (walking) starts her speech will take off. If you google Gross Motor and Speech well Gross Motor comes first than Speech. Why horse therapy and music therapy works wonders. But state cuts -cut all those therapies. That is our prayer. Every day we pray for walking and talking. Baili is a miracle but I will NOT have her in a wheelchair bound unless absolutely necessary. We have 7 months. My family all say, Baili is an O’Neil, we don’t do wheelchairs. She can walk and talk. Make her. Don’t carry her and make her ask for stuff. Why will she do it if we do everything for her? But I really don’t however I will make her do a lot more knowing about what may happen when she is 3. They say she needs the daycare academic environment. She will be treated like a 3 year old no matter the abilities. Hard to imagine Baili in a wheelchair and basically I won't have it! She will walk, I have 7 months.
I guess it is hard since Kirra picks everything up like no problem. Kirra says, “sure Mama.” I gave her a new book the other day to read from someone she says, “I like to read mama, I do, I do, I like it!” Kirra loves to help Baili. She knows literally everything I ask her. I say Kirra where do you pick this up?? Lol.
Kirra takes medicines, eats, talks in sentences, everything, no problem. Even knows quite a few letters and sounds. She really is a great big sister! Counts to twenty now... Kirra really is our little helper and lover. She loves her family so much!! She was walking with Baili last night of course she wanted to do it after I was with Baili walking for awhile. She did it with Kirra too. But Kirra walks too fast and Baili falls over. =) When I use cream for Baili eczema she wants some too.
Baili’s hospital apt for her hearing test will be on May 5. The doctors also said we don’t know how well she can see or hear at all. Since she can’t tell us. That is all an equilibrium thing. If her sight or hearing is off than that throws the whole body off too. Balances ,ect. She wants to play and walk. I ask her in bed quietly, "Bai can I have a hug?" She does it, so I know she can hear because it was too dark to lip read. She will have hearing tests next month and new glasses next month, every May. They put her under again in the hospital again. This will be on May 5. At least we will know if she is hearing correctly or needs tubes put in or what? She is sick a lot.
Anyway some updates on my Baili girl. Kirra is doing well too. She is getting so TALL. Wearing size 3 or 4T lately! Kirra weighed 29 pounds last time I checked her. Baili 22 pounds. No clue on heights but Kirra is about a head taller than her sissy. Lots of love!
Love,
The Mama
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