Wednesday, October 9, 2013

One year later

Well, I guess the old saying no news is good news, so we'll go with that.  It's been almost a year exactly since I last blogged, not intentionally, but things have been going well and we have been super busy with sports, girl scouts and life.  So I thought I would do a catch up post for Kaitlyn. 

Kaitlyn is now 3 years old (almost 3.5) and is doing amazingly well.  We have graduated out of Early Intervention (at age 3) she does not qualify for services through the school for their 3 & up program. That was one of those bittersweet moments, yay she is not delayed enough to need additional help but not sure what to do because we're not quite typical enough either.  Sometimes being in the middle is much harder than being either needing much more help or none at all.  It's hard to explain. 

Things that have changed in the last year:

She talks, all.the.time.  Speech therapy really helped.

She walks pretty well these days with the help of braces, but she can get around without, she just falls more.  No more walker for now, we turned it back into to EI.

She tries to run, she moves pretty fast.

She can jump with both feet off the ground at the same time.

She started school, a moms day out program two days a week for 4 hours each.  She hated it, screamed the first few weeks, now love it and cries when it's not a school day.

Things that haven't changed in the last year:

We still have to cath her every 4 hours and still doing the miralax regimen trying to get it just right.

We're still going to the SB clinic every 6 months. 

So really as you can see things are going well :) She recently got an AmTryke bike from Ambucs and the joy the pure joy of her being able to ride a bike like other kids, she just loves it.  These bikes are made for kids/adults that have disabilities that prevent them from riding a regular bike.  We're so thankful for it, we've been on the wait list for about a year and half to get her one.  Thankfully we did not have to pay for it, but we will recycle it back in to them when she outgrows it. 

Here she is taking it for a spin ;)

In other news, we head back to clinic on Oct 23rd for all our fun stuff, ha! You know, they get to the renal ultrasound, probably another urodynamics and seems like one other one that I am forgetting. :/ I will update with our news from the appointment when we get back.  Please send some good thoughts & prayers for us!

A few pics :)

1st Day of School!

Playing the sand, we went to the beach right before school started.

Supposed to be picture day at school - she refused lol so this is our fall school pic ;)

Thursday, October 11, 2012

SB Clinic

Yesterday was Kaitlyn's check up at the Spina Bifida clinic and thankfully everything went well. She was champ through all her tests and the results were great. We met her new neurosurgeon and he was nice, so that was a relief. Overall they think she's doing awesome and progressing well. We do not return until around April of next year. :) One very happy mama here. :)

Tuesday, October 9, 2012


I have a lot of anxiety about Kaitlyn's 6 month check up tomorrow. Last year in Oct, we found out she was losing some sensation during her urodynamics test.  Neuro thought it could be due to her spinal cord retethering, so they scheduled us for an MRI a few weeks later, on Halloween.  That was the day my world stopped again, you can only guess it's bad news when the Dr asks you to step into another room, while the nurse holds the baby.  One would guess correctly, we did get bad news. Her spinal cord was retethered which meant another surgery and soon.

We scheduled it for early December, and then stressed over the next several weeks about another week long hospital stay, another 6 to 8 hour surgery, possible NICU, you name it, everything went through our heads. I felt horrible about having to leave the two older girls again but they took it as well as possible.

Every little thing she does or doesn't do now makes me wonder if she's retethered. She seemed to be falling down a lot more over the last couple weeks, but now not quite as much, but I can't recall if it is more than prior to us noticing. :( I hate this feeling.  I feel like things have been going great, but now I am waiting for the other shoe to drop. I hope it's all in my head.

I will be back to update tomorrow evening once we get back.  Please keep us in your thoughts and prayers.