Monday, November 16, 2009

We ARE alive...

It has been a busy busy time. Lillian has been sick going on two weeks now, but I really think she is getting better. Each one of us in the house is taking a turn with a really bad tummy virus. NOT fun.

We had Lillian's case conference for school and it was harsh. To say the least. According to them, she tests out in the range of about 50, and a "normal" range is 90-106. While I was anticipating being told what she was not able to do, it still did not make it any easier to listen to. Harsh. I went in wearing business clothes and I think that helped me keep a straighter frame of mind. The days that followed, however, were not so easy. I cannot explain it better than to say it was hard. It was hard. It is reality and it is hard. The short story, she qualifies for all services and they recommended her to attend classes 4 days a week half days. All along we have known this was coming. We knew this was the next step, we did have concerns about her attending a classroom due to her immunity issues. The director of special education services tried a little speech on me about how hard it was to let our little ones go off to school---HELLLOO----really is it hard??? I've only sent four children ahead of her to school. Good grief. I stopped her quickly and told her that I thought it would BE beneficial for Lillian to be in a classroom- BUT- it would not be good for her health. At that point we whipped out the letter from the pediatrician and the stopped her in her tracks. What a day that was, it was difficult all the way around. This is not an easy transition. I'm struggling with it on many levels. The compromise, well, she will attend school at our "home" elementary school two days a week one hour per day. She will receive 30 minutes of each service total per week, education, PT, OT, and ST. This will all take place after school when no other children are present, sort of. She will be alone in the room. Clear as mud??? I already have a ST eval scheduled for her with our former first steps Speech Path and then we will seek further PT/OT services at our local hospital. Life is going to get incredibly busy in December.

Her stoma is still open, although very very tiny, and we follow up with her pulmonologist on the 18th. I can't really believe it has been a month since it has come out. every time I give her a treatment, I'm always looking for a t-vent to put back on. Strange. It is very strange to put her to bed with NO monitors. AND- did you know she will be THREE in nine days. THREE???? So tickled to celebrate another year!!

Thursday, November 5, 2009

It has been a while

Life surely has changed in the Halcomb house. You would think I would have more time, but alas, tis not true. Lillian has been doing great. (til today she woke with a 100.00 fever and vomiting..trying not to fret...) She has just exploded into this wild child. She is into absolutely EVERYTHING! There are days I spend just keeping her out of the trash. She is doing so much more physically, it is just amazing. I really just didn't realize how much that tiny piece of plastic interfered with her day to day. I think it is record breaking how long she has gone without puking through feeds. We are trying more and more different foods and such by mouth to try to get her eating. She will chew solids to mush but just will not swallow. She does great with liquids, but not solids. Anyone out there got any tips??
She is almost able to run is too cute. We are scheduled for her IEP on Monday with the school system, but the closer it gets the more I am leaning towards not sending her and just seeking indepedent therapies at other agencies. This is becoming a very difficult decision for me to make. Matt really does not weigh in too much on this subject. It is hard to know what the best/right decision is for her. I'm leary of making the wrong choice.

As I type, she is in the kitchen messing around, so I have to cut this short...will update soon.