The paranoid woman...

Connor's chromosomal condition still confuses me more than words can describe. Instead of a syndrome we have a list of could be's, maybes, no's and yeses. I understand my role as his mother and I know that I need to do some things to check the list of maybe's each year. This is all fine to me but why cant I find any info on the internet or from his doctors at that regrading his specific deletion?

Today I decided to look up Connor's chromosomal translocation to see if that led me anywhere. Well, it did. Straight to leukemia. Now I am paranoid and think it might be a possibility that he could be at a higher risk due to the 12,21 translocation. Connor is relatively tiny for his age (due to missing genes) and does not grow very quickly. I wrote his genetics doctor explaining that yes I am over protective and yes I can be a bit paranoid at times but is this something I need to be worried about? I hope they don't think of me as being a freak or anything.

If I had some answers that better explained this whole situation, I might not be such a nervous wreck all the time.

ACK!

Finally on a roll...

We finally have all of C's therapies set. He had his last session with Daren last Tuesday, Feb. 2. It was a lot easier than I thought it was going to be because Connor was in a ridiculously good mood. He shouted and smiled the whole session. We took a few pictures of Daren and Connor together and exchanged email. I will send him the photos I took and will also go ahead and send a video of Connor once he starts walking. I feel it is the least we can do considering with out him, Connor would not be where he is now.

Con started PT with his new therapist Thursday (I cant remember her name for the life of me right now) and also finally began OT. He LOVES his occupational therapist, Leslie. She is so sweet and he is smitten on her. His new physical therapist is also very nice and I like how she works. Daren was all about getting Connor to walk but now that he is almost there, it is time we start focusing on his very stiff joints and muscles. Once he is actually walking she said she will let us know weather or not she feels she needs to recommend braces or supports for his knees and legs.

His occupational therapist says that as soon as he gets more mobility in his arms and is able to rotate them more, he will be able to start feeding himself (with silverware) and using crayons and markers.

The one thing that has taken us so long to get through our insurance is Speech therapy. They wanted to deny Connor sessions because in order to get speech one would have had to suffer a stroke or some other debilitating disorder or have a birth defect. I guess our insurance company didnt considering missing genes to be a form of a birth defect. I had to send all of his genetic paperwork to the insurance to prove that he was indeed born with a missing chromosome and does indeed have an underdeveloped frontal brain all causing him to be delayed in speech. After that and after his doctor changed the prescription to chromosomal deletion, we got approved. He will be starting speech Monday. I am the most nervous about this one. I just cant see how leaning to talk will be fun for him. PT and OT are fun because they manipulate his little muscles while he plays with toys. He will have to pay attention to his therapist for speech which, if anyone has a toddler, knows they don't pay attention for long.

I am so excited though to here him learn to speak.

Connor is also continuing to get play therapy through the regional center and that also seems to be doing wonders. I think the play therapy is just enhancing all of his other therapies making it that much easier for him to learn.

Now that we have all of his therapies in order, my next task is to figure out how to keep my baby a baby a bit longer. I cant believe I am planning his second birthday already. YIKES.