Thursday, June 4, 2009

Mail and more

Jude's seizure activity has picked up. I am sure it's because he is growing and yet again we need to adjust the medication. We still have not raised his nightly dose to 3 because he was not eating properly. Seems he seems to be increasing his food intake we are going to increase the medication tonight. I am hoping this does not cause another reaction where he refuses to eat.

As stated Jude's food intake is up, which means he is eating 6oz bottles with rice. Jude is still refusing to eat baby food though, and I am unsure what this means for the future. I know we have to eventually get him to take more calories everyday. We requested a nutritionist from ECI, but they told us they only have 2, and the wait can be long. We are also still waiting on the vision therapy. I am about to call a few people!!! In addition I have yet to hear back from MDCP, but I did get the HIPP approved so that's good news. Dealing with agencies can be grueling, but in the end the rewards are worth it.

So I mentioned Jude has not been going to sleep. This is a video from last night. It's very dark so you cannot really see him but he is moving around, smiling, and talking. If you are patient you can hear how Jude "talks".


I then snapped a picture of him with his eyes wide open catching him being naughty, and not sleeping!! He is teething so he has a puddle beside him, just ignore that.
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So I know that soon Jude needs to go upstairs to his crib, but I am having a really hard time letting him go. He is getting a bit to big for the bassinet portion of his play yard. Mike laughed when I suggested that we just let him sleep in the play yard its self each night. He then made a joke that I was going to make him bring the crib to our room. I just feel better knowing Jude is beside us.

So let me confess something that really annoys me, and it shouldn't. The Gerber mailers explaining what your baby SHOULD be eating right now. It's full of menu's, ideas, and lots of babies eating to their hearts content. I growl at the mailed every time I receive it, and would like to tell Gerber a thing or two! I know it shouldn't bother me, but it does. I would like to ask Gerber to feature a baby that has special needs in their ads. Maybe show the special spoons made just for children who need help getting the food to their mouths. Anyway, I will hop off my soap box, but I had to share. I guess it's equivalent to receiving their flyer's when I found out something may be seriously wrong with Jude prior to when he was born. As an expectant mother we all sign up for these wonderful offers of free diapers, formula, wipes, and more. Yet when something unexpected happens these very same joyful mail surprises become reminders that everything is no okay.


5 comments:

yonca said...

He's so cute!
I'm following you from MBC, Follow Me Club.
Have a great day!
Yonca

Bird said...

You know, I hate the e-mails from Pampers--but I just delete them without reading them. No point letting stupid flyers make me feel bad, right?

Bronx Cataldo's said...

Hey, we just changed rooms with the kids. It was easier to move our bed outFinnian had just gotten his big boy bed.I was afraid I wouldn't hear him during the night so we waited untill I felt secure. So why not let Jude sleep in the play pen? My Dad is one of 9 and they were all in one big huge room and the Grandmother used to stay with them too.GEr

jocalyn said...

Ok...we did move Kendall's crib into our room a month ago! The entire first year of her life she slept in our bed. Since she is in her crib now, she is happier and so are we. I moved it into our room cause I had a hard time thinking of her accross the house having a seizure and us not knowing. We all sleep better now. Don't rule out moving the crib in your room!
Also, you should talk to your Dr. about meeting with a nutritionist or dietician. You don't have to go through ECI!
Hope you guys are doing well!

Maryann said...

I just wanted to let you know that I understand some (but not all) of what you are going through. My oldest son has a form of autism and we have had issues with him since before birth. It is very hard to be the mom of a special needs child, but we somehow gather the most strength and often are the most enduring people I know. Many blessing to you family.