Wednesday, April 14, 2010

Mary Poppins has left the building

I am in a funk. I hate to admit it, but I am. Today Mike was talking about his favorite vacation destination, Hawaii. I replied, "We won't ever go on a vacation alone again". I think this took Mike by surprise. He said "Quit being so negative", and I replied, "I am always the positive one, always! I try to find the good in every situation, but I cannot be your Snow White all the time". He then explained he needs me to be my normal Snow White, because it keeps him sane. Yeah well buddy I am a little burnt this week. My job is so busy, and since Sarah left I have more to do. Jenn is amazing, and fits right in, but it's still taxing sometimes. On top of that I am working on a lot of other stuff concerning the kids lives, and well being. Emily has stuff going on, and so does Jude.

Anyway. moving on. Last night we loaded the kids up, and went to look for some herbs, and plants for our garden. Thankfully, my loving husband set up the dog fence to where the terrorists can no longer access my "sanctuary" in the backyard. Last year we planted flowers, and beautiful plants only to have those terrors ruin them all. Yes, I still battle with Mike's dogs, you have to know them personally to understand. I may take Bigsby outside, put him on the side they no longer have access to, and have him say "nanana boo boo!". I told Mike I really wanted to get a swing for Jude to go on our porch so he can sit outside with us.

I am at a loss on what to do regarding Jude's head control. I hate to admit he may never have any, but we are not seeing any large improvements. He has therapy twice a week, and we work with him as much as we can at home. I am still very frustrated with our new Britax car seat they gave us for his special needs, because it just doesn't help with his head control. We found the little "sleeper" pillow that I posted yesterday, but it starts slipping. When it slips Jude winds up face first in the pillow, which isn't good at all. I am wondering if the aquatic therapy will help Jude with his muscle tone, and it's something we intend on exploring. They do offer swim therapy at the therapy center Jude visits.

Jude has speech, and PT today, but sometimes it seems he is getting the same lessons without making any progress. I hope we get to see more, but I do think back to what the original neurologist told us. "It doesn't take much brain to be a baby". The words are harsh, and we can harp on the way he delivered them all day, but in some circumstances these doctors are right. It doesn't mean I love Jude any less than I did before, it just means I have began to think back to the circumstances revolving around his initial diagnosis. I actually revisited the entire scenario this morning with Jenn. My perinatologist office called regarding the bill I have been paying on, and she asked what that type of doctor does. I explained they were the ones that told me there might be something wrong with Jude's brain. She was a bit confused, and thought it was my OB. I then explained the situation. I was 35, and even though my OB'S sonograms showed a perfectly healthy baby she always sent her moms 35 or above to the perinatologist for their gender sonogram, and to check the baby. So we were all excited to go find out what we were having. They scanned Jude carefully, and they told us he was a boy, and in the next sentence they said his ventricles in his brain seemed slightly enlarged. So from there we did an in utero mri, tracked his progress, etc etc, until he was born. When he was born we were told he was perfect, but at three months we found out otherwise. In other words, I can see how some mothers don't know there is anything wrong with their child until they are 6 months or older. Without that perinatologist visit I would have had any inkling there "could" be something wrong until Jude was 3 month. Even at three months he was simply opening and closing his mouth, I am not sure i would have caught that if it had been my first pregnancy. So we were at Cook's and once Jude's MRI was done we heard the news that Jude had several things wrong with his brain. We haven't done another MRI, and I am not sure we ever need to. Its just a picture, and that picture will never tell us what all Jude will accomplish. We do EEG's several times a year, and one test that was slightly positive was his latest eeg. I mentioned that it showed all the seizure activity is coming from the right side of Jude's brain vs the entire brain. This means that at some point in the future they may discuss removing the Corpus Collasum to separate Jude's two sides. This would keep the seizure from spreading to the other side of his brain. Another test we need to follow up on is the bloodwork through the hematologist. We got the first round of Jude's blood tested, but we had two more visits before we tested everything. They were looking to see if there was a particular reason Jude suffered a stroke.

Sometimes I feel like all the therapy is taxing, but we hope it will yield results, and help Jude. I think the BIGGEST help he could get is his loving nurse back. She brings jude out of himself during the day when I am away. She helps keep Mike sane, and helps Jude feel secure. I sometimes wish I could be there with Jude, actually I wish that a lot. Although, Mike is more stern with Jude, and that is needed to push him to do more. I end up caving when Jude cries, and I just want to hold him, but Mike will push him to do more.

Anyway, I will be over my funk soon, it's just one of those weeks. I am looking forward to going to DC for Em's award in two weeks. Although, I HATE the anxiety leading up to getting on a plane, which is crazy because they are safer than cars. I cannot wait to see the sites, it will be amazing.

1 comment:

Candace said...

Oh poor Jenn! You just need a big hug! Facing those painful realities is...well....painful. I know also that since Jude is still so probably have a ton of what if questions. That was a toughy for me. And you guys are still learning all about how to deal and what Jude is going to be like. I remember a lot of similar feelings when you talk about stuff like this. Hugs to you and to baby Jude...