February appointments.

Chase had 2 SB appointments this month. One with his urologist and one with his neurosurgeon. He also had a speech eval and of course his regular therapies through E.I.

Urology - He had an ultrasound and things looked good. We don't have to come back for 3 months. We will need to schedule a Video CMG within the next month and if his testical doesn't drop with in the next 3 months, we will talk about going in and retreving it. Not too bad, but not excelent.

Neurosurgery - His ventricles were still small, so we bumped the pressure down to 1.5! Yay! We don't have to go back for 6 weeks. Yay! But...his right eye is turning in so we will be seeing an eye doctor in the next couple of months...could be worse right?

Developmental and Physical Therapy - He's moving right along. He is just about where he should be. He does good with lifitng his head and he is grabbing thing and batting at his toys too.

Speech evaluation - He doesn't need speech therapy. He is making the sounds he should be and his suck/swallow is great!

Next week Chase has his 4 month checkup and shots.. but we will talk about starting food. Crazy!!!!

Here is what I'll leave you with...

-e

Latex

As many of you know, Chase has a latex precaution since many Spina Bifida patients develop a latex allergy....

I now have a latex obsession....and it's not a good one. We can send the thank you to Sopie the Giraffe for this (she is made of latex).

Do you know how many house hold items have latex? (here)Apparently, a lot. This is where the obsession starts.

I was looking into getting a Sophie the Giraffe for Chase, but she is made of latex and since it’s used as a teething toy, it would probably not be a good idea for him to have it and have a reaction in his mouth. So, I email them and asked if they had a non-latex Sophie (I’m still waiting to hear back). This, of course, spiraled to emailing Gerber about a tooth and gum cleaner we have, The First Years about a health care kit we received and I keep finding more and more stuff to inquire about. I just found out a pacifier that he likes to use is made out of latex…now I feel like a bad mom.

I have things out of packages so I don’t even know where they have come from or who it is made by. I have to decide if keeping it is worth it or should I just throw it away and start over.

I’ve become fearful of it and it’s starting to stress me out. It’s becoming a nightmare. I feel that had I known he had Spina Bifida, I would be better prepared for this, which knowing and preparing is a whole other topic for a whole other post.

In better news though, Chase is doing well. His soft spot is still low so I’m sure his shunt is still working. He is oooh-ing and ahhhh-ing and goo-ing and laughing! The therapists are saying he is up to par with where he should be. He had a speech evaluation yesterday and she said right now he doesn’t need speech therapy. WIN!

I will leave you with this:

Its my new favorite! <3

-e

3 Months

Chase turned 3 months old on the 19th. WOAH (insert Joey Lawrence here)3 months? Really? Where did the past 3 go? Hrumph....

Anyways. I tried so so hard to do cute pictures of him and it just was not happening. I tried to iron on a "bowtie" that said 3 months onto a onesie, it wouldn't transfer. So I ghetto-ly wrote 3 months on the onesie. Chase did not want to participate either. BOO!!!

I got this picture of him the next day:

It works.... I made this:

What a difference 3 months make.

Bonus: He keeps trying to laugh. He doesn't quite have it down yet, but I will post the video on YouTube soon.

That's all for an update I have. I will leave you with one more picture which is my new favorite:

^_^

Some light in our tunnel!

We had our revision postop yesterday. Dr. B said that his ventricles were very small so she decreased his pressure setting from 0.5 (the highest) to 1.0. This means his shunt is working properly. This also makes me think that it hasn't been working properly since November 18th when we had our first overnight stay.

I've come to realized that a lot of people don't really know what Spina Bifida is, and the sad part is that it is more common than it is acknowledged.

So my faithful readers I encourage you to to check out the following sites:

Spina Bifida Association

Spina Bifida Association of Illinois

and since Chase has hydrocephalus:

Hydrocephalus Association

Hydrocephalus Kids

Spread the word. Help others know what Spina Bifida and Hydrocephalus is!

And here is a pic of Chase from this morning:

Did we meet our deductable for 2012?

I'm pretty sure we did. Chase had his first revision yesterday. The catheter that went from his ventricles to his shunt device/pump was clogged and he was bypassing his CSF through his burr hole, which in turn was collecting around his shunt site. His neurosurgeon decided in clinic Tuesday that it needed to be done. Bryan took him down Wednesday for the procedure and stayed with him overnight. He is home and doing well and we're hanging out together tomorrow. :)

He will be starting his PT and DT through Early Intervention on Tuesday. I'm actually really excited for him to be starting, although, I think I double booked the therapists...

He will go back to see the neurosurgeon on the 17th to check how he is doing from surgery.

That's all I've got for now.

Here ya go:

-e

Happy New Year!!

It's going to be a fun year, I can already tell. We're hoping for no hospital stays this year, so this means we cannot have any shunt malfunctions!!!

We did have an overnight stay on Christmas Eve. Chase's shunt site was quite swollen. They observed him overnight and said there are no signs of it malfunctioning. He had a x-ray and CT and both showed no signs of obstruction. The Doctor had said that some fluid may have leaked out from the hole and collected around the shunt. Since there was no sign of a malfunction, they didn't seem concerned and they sent us home.

Santa left some presents at the hospital for Chase since he didn't know if we would be back in time for Christmas. Chase got some ornaments, some books and a Beanie Baby Crab. Santa also left a lot of presents in Chase's room, but was unable to wrap them :)

We have our first Spina Bifida Clinic on January 3rd. We will see all of his specialists that day which will include his neurosurgeon, his urologist and his orthopedic. This will be the first time we see his orthopedic specialist and I'm interested to see what she has to say about his legs and feet and movement of them.

I think that's all I have for an update for now. I'll post an update after his appointment on Tuesday...

-e

A month later...

Sorry. It's been over a month since my last post. Sorry to keep you hanging. It turned out that they let Chase go home the next day, November 15th. They taught us how to change is wound dressings and administer his antibiotics through his PICC line. And he was home...until November 18th. On November 18th we went in for an MRV (and MRI of his ventricles) I left Children's and as soon as I got off of I94, I got a phone call that we needed to bring him back because his ventricles were enlarged and they wanted to observe him in case he was having a shunt malfunction. So back we went. They let us go the next morning because his vitals didn't show signs of him having a malfunction. So, we had him home for his first Thanksgiving. :) The Friday after Thanksgiving, we had a repeat MRV, which showed no changes from the week before and the took out his PICC line since his back was healing so awesomely. He also had his first visit with his pediatrician. He was 9lbs 1oz and 21 1/4 inches long. I went back to work on December 7th :( It was quite hard since I didn't have a whole lot of time with him, but I know he is in great hands. Well that's all for my update. He has his 2 month checkup on December 27th and then he sees all of his Spina Bifida doctors on January 3rd. Here is hoping everyone has a great holiday! -e