7.11.2007

kinda bummed

well once again i am so sorry for the lack of updates, that is if you are still with me here. Nathan did not have his GI appt last week because neither Mark or I could get off work. It is scheduled for next thursday the 19th, the day before his dentist appt. poor kid. anyway-I had thought we were out of the words in terms of age for a feeding tube; however, Janice the OT mentioned that one of her other little kids she works with just got one and she is two weeks older than Nathan. She did not know how much the little girl weighs (or wasn't telling me). Anyway, when Janice arrived last Friday for therapy she mentioned that it will be her last session with Nathan because there is not much else for her to work on with him. This was a surprise to me, but a good surprise. She did ask if he is getting speech because she finds him difficult to understand. I questioned if that could be due in part to the lack of teeth, but she did not think so. We have three appts today, PT, Teacher and the coordinator from Early Intervention, Jamie-so I will talk to her about whether she thinks he needs speech therapy. I tend to think his articulation is fine. I do wish he would start putting two words together though. Ever since I pointed out to Mark that Nathan does not put two words together, he has been trying to get him to do so. He says, Nathan-Say "Hi Libby" Nathan says either hi or Libby but never both. Mark keeps repeating it, getting a little louder each time to no avail. Once you get Mark on board, he is guarenteed to get the job done!

anyway-just bummed about Nathan's appearance, especially his fingers which seem to be getting really bad. just bummed that it has been almost one year of not knowing what in the heck is wrong with him and no end in sight-no testing we are waiting for or anything. just continuing to follow up with all the specialists and wait and see.

2 comments:

Marla said...

My daughter has Noonan Syndrome and didn't put two words together until just after she turned two-years-old. Then, within a few weeks, she was speaking in 3-5 word sentences! I know it can be frustrating, but I'm sure Nathan will be doing the same soon. . .

donnaleigh said...

Dear Mark, Phyllis, Libby, Nathan

I am still with you here. I can see how all of this is so frustrating. You are really great parents. You have fought through the most challenging of circumstances. Libby and Nathan are growing up knowing that they are dearly loved and worth the fight. That is the best.

I love you and can't wait to see you.

Love
Donna