Neuro/Ortho update

As I mentioned, Chase was due to see the Neuro this week and we were seeing the Ortho for the first time.

The Ortho said that his spine looks great, and his hips don't look shallow like other kids with SB. She stated from an ortho standpoint, he is at the mild sacral end of SB. When he starts looking like he wants to try and start walking, they will fit him for AFO's (braces) and he may need a walker to help him out. Depending on how well he does, he may just need ankle braces in the future. I'm determined to prove them wrong and show the he won't need any!

The Neuro says he doing great! His ventricles were small again so she bumped his shunt pressure to 2.0! It was a quick visit and we don't have to go back for 6-8 weeks!

Next appointment is for his Urodynamic testing. Let's hope that goes just as great!

-e
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5 months old

I know, I know. He turned 5 months old 5 days ago. Sorry.

Stats: 18lbs 4oz 27in long. (He's a moose)

I can't believe I've had my very own baby for 5 months. CRAY-CRAY!!!! Everyday is a new experience for us. Things seem better now that he has his glasses. We've gotten through veggies and now we are onto fruit. He's fitting in 12m tops and 9m bottoms....

Where did my baby go??

I'm happy and sad to see him grow. It is definitely bittersweet.

I'll write again after Tuesday; he has a neuro appt and his first ortho appt!

-e

Glasses part 2

They came...

And he looks so so cute.

-e

4 months old and glasses

We're 4 months in. YAY! It feels like it's been longer. I can't believe in 8 months, we will be 1 year old! Wowza! We have a lot going on the next couple of months!

We started eating solids about 2 weeks ago. So far he has eaten rice cereal, oatmeal, barley cereal (he loved barley) and we started peas just this Tuesday (he loves these too) I have a feeling he won't have any problems on eating.

He is also in tops in sizes 6m, 9m and 12m...He has a long torso and short legs!

Chase saw the eye doctor today and he will be wearing glasses starting next week when they come in. He is farsighted meaning he doesn't see well up close. Poor guy and I'm always in his face, lol. The glasses will also help his eyes from turning in.

He has a shunt recheck at the end of this month and he will also get to see..the orthopedic doctor (finally!!!) I've been waiting for 4 months to see her and know what she thinks about Chase and his legs and movement, ect. Hopefully she will say good things because if her opinion is totally different that what I've been thinking, I may cry...then prove her wrong!

In mid April we will (also finally) have his urodynamic testing. I'm am hoping very hard that everything will be just fine and we still won't need to cath him. He will also have his 6th month check up (6 months, what?????) and then in May we will see the urologist to find out the results of his uro tests and talk about his testicle (hopefully it will have descended by May)

Whew! What a busy 2 months we have ahead of us!

Chase was featured in 2 blogs this month! Check us and the blogs out!!

The Never Stop Mom
This is a mommy blog written by a dear friend of mine! It's a great read!!!


Spina Bifida Stories
This is also a great blog to read! It's very heart warming and shows that having spina bifida won't stop anyone!

Of course I will leave you with a picture:

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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...

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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

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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:

^_^