Friday, November 20, 2009
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!!
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 now...it 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.
She is almost able to run now...it 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.
Friday, October 23, 2009
Still hard to believe
Lillian has been doing FANTASTIC. Her night time breathing is a little shaky, ecspecially since the stoma is so so tiny now. It truly is unbelievable what a difference it has made to have it out. First off, her feedings have been great. Hardly any vomiting. I've been able to increase the rate and volume that she is getting. She is absolutely full of energy. She is doing things she has never done before. One day, she just walked around looking up. She is babbling nonstop and started saying ma-ma the day after we got home. She giggles ALL the time. Something I don't think we noticed because it wasn't enough air to make noise. It is hysterical. She has found that she can make a high pitched scream and laughs so hard at herself. I could go on and on.
We are getting ready for transition out of First Steps into the school system..our meeting is Monday.
We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.
Thank you thank you thank you all for your support and prayer. God is good.
We are getting ready for transition out of First Steps into the school system..our meeting is Monday.
We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.
Thank you thank you thank you all for your support and prayer. God is good.
Wednesday, October 14, 2009
A New Leg in the Journey
So---PTL it's out. Gone, goodbye trach. Thank you all for prayers. We just returned home today and I think I'm still absorbing it all. There is much to tell, but I dont' have time right now. i will leave you with this picture....
Monday, October 12, 2009
Tomorrow
First off, PTL Lillian is finally mending. Last night was the first night of no round the clock treatments. WAHOOO! I'm so relieved she is healing. I know God's hand is upon her always.
Tomorrow, well, tomorrow will be the longest drive EVER to KY. I think I haven't really had time to really consider things bc I've been so consumed with her sickness. I already have that feeling of not knowing how I'll feel when they come out of surgery and give us the word. Tears, I know there will be tears either way.
PS-
Is it wrong to throw yourself on the feet of the doctor?
Dear God, please be with Lillian tomorrow as she endures yet another surgical procedure. Give us grace to accept the outcome and your will for Lillian's life. In Your Name, Amen
Tomorrow, well, tomorrow will be the longest drive EVER to KY. I think I haven't really had time to really consider things bc I've been so consumed with her sickness. I already have that feeling of not knowing how I'll feel when they come out of surgery and give us the word. Tears, I know there will be tears either way.
PS-
Is it wrong to throw yourself on the feet of the doctor?
Dear God, please be with Lillian tomorrow as she endures yet another surgical procedure. Give us grace to accept the outcome and your will for Lillian's life. In Your Name, Amen
Saturday, October 10, 2009
Three Days
Since my last post and I'd love to report that Lillian is infinitely better. Notsomuch. Take note of the time, I'm doing her three am treatment and thought I might post a little update. She does seem to be on the upswing, I will say. Her cough is becoming more productive, I'm not sure there is great improvement in her wheezing, hard to tell when she coughs so much. She is stuck to me like glue, so clingy. To add to that we had to battle the constipation battle today (or should I say I had to battle it.) nothing like forcibly holding your child over the toilet in hopes that the position will be better for her. ACK. I think we are just going to go forward with the hospital trip, let them make the decision when we get there. I just don't know what to do. It is difficult to know what the right decision is for my sweet angel. I'm so afraid if we cancel, she will definitely lose the opportunity for decann. Matt has worked evening shift all week which has been hard, but has allowed me to catch a few winks in the mornings before he leaves, since my current bedtime has been running between 3-6. That just wears a person out. PTL we have been managing here at home, as I would be even more exhausted at the hospital.
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