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!!


  1. I still can't believe she has that trach out! It must still be a shock! I hope everything works out well with the school situation. That must be SO hard. I'm not looking forward to these decisions.

  2. Well , can't say I'm surprised that it was HARD! This is you and Lillian we're talking about here. BUT!!! I do have a feeling YOU will make it all just work! You're a strong force to be reckoned with! glad you posted, you know I was starting to WORRY, again.

    And, thanks for your comment.I'm saying it's HARD too. And YUKKY

  3. I miss you too. Bunches and bunches.
    I still say...their IQ tests are not appropriate or accurate. Take that number with a HUGE grain of salt. And when you start to doubt, look to the right and read that 70% of children with her deletion die by age 1 or 2. She's here for a REASON. She is amazing, and she is going to rock that elementary school!
    Maybe once we're out of cold/flu season, she could try out the developmental preschool a few hours a week? I say that as a mom whose kid just started and keeps getting cool emails from the teacher about what her kid is doing that I know she wouldn't do if I were in the room!
    Hope she's feeling better. And you? Take care of yourself.
    TRUST. Remember?

  4. Some teachers are so dumb. You have to do whats best for her. She will blosom in school. Jax is "homeschooled" to avoid a classroom full of germs to. I don't feel to bad about it though because cognitively he's at about a 2 month old level. Whats he going to learn in a classroom?

  5. Sometimes teachers think they know everything and they DON"T. Good job, Momma!! Knock that lady down a peg!

    I can understand the fear of classrooms. My kids are always bringing home colds or other viruses.

    I hope you guys feel better. My girls are getting the H1N1 vaccine on Saturday! I am sooooo surprised the peds office had it!!