April 2010

Just a quick note on here for Julian.  This week was his 'Spring Break' from his class, so he didn't have one today.  He was some kind of upset!  I thought that if I didn't mention it, he wouldn't know....well, about 10:30am (30 min after when she would have been here) he went and got his communication board, his messy tray, chalk board and chalk, and pointed to the door.  I knew then I'd better explain.  He wasn't a happy camper!  But it did make me feel good that he likes her so much! 

At the end of this month, Julian has specialist appointments with his gastroenterologist and his neurologist.  I'm hoping and scared that we will most likely be getting the test results from the mircoarray test that was done a little over a month ago.  We still have not received any results concerning the muscle biopsy, and that's frustrating.  He's scare is 'healed', but still pretty red.  Chaeli points to it every time they are in the bath and says 'juldge (how she says 'julz') boo boo', it's cute. 

The month of March has been very difficult, but the kids are doing okay.  Julian's dad and I are both concerned (I believe I can say that) that Julian lost weight at this months' WIC appointment from last time he was weighed at his pediatricians'.  He was down to 29 lbs, fully clothed (with a thick hoodie), everything except shoes.  We talked about it and decided against making another pediatrician appointment at this time, since he has two specialist appointments coming up and will be weighed then.  However, I feel that if he hasn't begun to regains some of the weight he's lost, I will have to reconsider that.  He's not been eating as much for me, and it worries me.  I know it seems little, but he's tiny to begin with.  He also has grown an inch since he was last measured. 

He has been making 'projects' in his classes, which is awesome, because he actually lets the teacher put his finger in paint, or glue, or whatever they are using, and press it to the paper.  You can look at him and tell he's not really happy about it, but he does it and waits until its' done before wanting to clean his fingers!  He still refuses to use his whole hand most times, but it's progress.  She calls this his  desensitifacation work.  He's also improving even more with making noises and sounds.  He doesn't do it as well when Mrs.Kathy isn't here, but he tries for me sometimes.  I am trying to use the 'Julian, I need your eyes' phrase and sound out things more.  It's hard when I'm running after both of them, but I get in a few good mini lessons a day.

Julian is getting slightly better with the potty...some days.  It's still a struggle, although I think he's doing better for his dad.  What could I be doing wrong?  Everything I've read says not to make him sit there forever, even though I KNOW he's trying to poop, so I let him off the potty and ten minutes later he's filled his pants! So the next time I make him sit there longer, and I sit in there with him and try to distract him, and that just gets me a fit from him.  I guess he'll do it in his own time.

My current biggie (well, behavior wise) is getting Julian to help pick up his toys!  I just feel that he is 3, and I realize he's special needs, but his teacher thinks that he understands more than I give him credit for sometimes, and I should make him.  I'm having a hard time doing that right now, and really just want to make things 'easier' on him, and I KNOW that's not going to be good in the long run.  I finally got him to pick up a FEW toys in his sister's room this morning, and I told him that before bed tonight, we would finish picking up before bath time.  Mrs. Kathy thinks that giving him, first this, then that's, will help.  We'll have to see!

On another note, next week we will be getting into the YMCA, and I'm hoping to check out a class for each Julian and Chaeli.  It depends on how much extra it is of course, but I think getting them into something that might take there minds off of home being different might help.  Something fun, and something healthy! I am considering tumbling for Julian and Ballet for Chaeli, but we'll see. 

I will post on the appointments at the end of the month!

Microarry Testing and Updates

A few months back, I was writing on here for my son how he needed this really expensive test, and our insurance wouldn't cover it.  Well......

A special grant came through about 3 weeks ago, and he has received this special, simple, blood test.  We should have the results in about six weeks.  I'm a little irritated for my son's sake that this couldn't be accomplished before the invasive muscle biopsy, which is JUST now healing and was done the beggining of December, BUT maybe something will come up in one of the results that will be able to help us help Julian in a more effective and productive manner.  The biopsy results will be up to six months from about the First of Feb.  and the Microarry should be in about four more weeks. 

Just is starting to say beggining sounds with his Teacher Mrs. Kathy on Wednesdays!  I'm so excited!  He's even letting her put finger paint on his pointer finger and he taps it on the shapes he's brought and made TWO pigs on TWO different weeks!  For Julian, this is AMAZING!  HE NEVER would have wanted to get dirty before!  She's definatly helping to desensitive him when it comes to his hangs being 'icky' and that's a good thing!  One more step to him hopefully being in a 'regular' school one day! 

I think it's really easy to underestimate what Julian goes through on the daily basis, because he does have 'normal' days sometimes, minus the talking.  BUT, he's at the age now where I can tell that he knows that he's not like his siblings, and I honestly think that makes him sad.  I'm hoping that we can figure out what is going on, so he and we can move on and hopefully help him better! 

Potty training is still rough, but this last week has brought some changes for him, so I'm not really 'counting' it.  He did poop in the potty for the first time Thursday, and he does over all have less pee accidents.  We are keeping hanging in there. 

He was only REALLY sick a couple of times this winter season, which is a major improvement, and one we are really thankful for! 

He is due all of his follow ups with all of his specialist, so I will update when those start happening, hopefully sooner rather than later!

Thanks again to everyone who follows Julian's Journey!