Sunday, October 5, 2014

Fall


Buzzfeed had an article about Chicago, when I came across number 12.

Which made me choke up.

Fall is hands down my favorite season. The colors, cool air, Chase's birthday.
But fall also has a tendency to make me sad...when the colors fade, the cool air gets cold, Chase's birthday.

The photo in the Buzzfeed post made me think of the weekend after Chase was born. Chase, was born on a Wednesday. It was cold, rainy, and sad. We stayed at the Ronald McDonald house so we could be closer to the hospital. I remember a few mornings later, how it was still a bit cold, but so beautiful out. The sun was shining, the leaves were full of color. It was an absolutely gorgeous day. I remember wanting to walk to the hospital, just to enjoy the time. Enjoy something out of the miserable few days we had been dealing with.

Sadly, I don't remember if we ended up walking or taking the shuttle.

This time of year reminds me of where we were so long ago (3 years already). It also reminds me of how far we have come.

-e

Monday, July 7, 2014

Goodness

Wow. I haven't written in over a year and for that I apologize.

Life is busy. Good, but busy.

If you don't already, you can follow Chase and his progress on Facebook as I do more updating there.

Chase is walking well, more so with hinged AFO's but just as well without them. His PT and I feel that he has the stamina and strength, however, his balance is very off...almost like he is drunk (for lack of a better term) He has had 3 ear infections and is retaining fluid in his ear, so we will be meeting with an ENT tomorrow to see what our options are.

On Thursday, he will have a bladder test. He has one every year. As of right now, we do not cath him at all, and I'm crossing my fingers it will stay that way. He has not much interest in potty training, however, we do let him sit on a training potty when we go to the bathroom so he gets an idea. We will find out the results of that next Tuesday.

Next Tuesday we will see everyone at Spina Bifida clinic. So I will do my best to update after.


-e

Wednesday, January 30, 2013

15 months

I was supposed to be doing a picture every week...oops. I'll put those at the end.

It was the month of appointments. We saw EVERYONE so this will be a huge update.

EYES - She feels that there has not been any change, so we will go back in March for another recheck and to decide if we should go a surgical route.

15 MONTH CHECKUP - Doing great! 24.7 lbs and 31 1/4 inches tall! I knew he had a growth spurt!!

SB Clinic
ORTHO - We will be getting braces, but only to help strenghten his left leg. These will go from his knee to his ankle. Eventually, he will get ankle ones then hopefully not need them at all. His ortho stated 90% of kids with Spina Bifida need braces their whole life, she feels that he is the 10% that won't. We will see her again in 6 months.
UROLOGY - In comparison to his last bladder test, things have changed a little bit. We will go back in 4 months for a repeat test to see if he is decreasing, otherwise we are still not cathing.
NEUROSURGERY - Overall she is happy with how he is developing. She has no worries.

So pretty much good reports all around!!!!!

Here are the week pictures I decided on:

2/52

3/52
first haircut

4/52

-e

Sunday, January 6, 2013

Happy New Year!

I hope everyone's holidays were amazing! We spent the night at home, so that was amazing enough (if you don't know/remember, we spent the night at Children's on Christmas Eve 2011).

I'm sorry I didn't post anything last month. With the holidays, it was just hard to find time.


Chase is doing amazing. He's crawling and pulling to stand. His sitting is a lot better too.


This year, I want to post more...I hope to anyway. My dear friend Lydia had a blog post today and she is doing a portrait a week project. I've decided to do the same here.

Now, I'm not a "photographer" and I'm sure that most (read all) of my pictures will be from my phone, but I do think it will be cool to do a weekly picture of him.

Here is 1/52:


'till next week

-e

Monday, November 19, 2012

13 months

Today Chase is 13 months old.


I often reflect on where we were a year ago. For instance, today we were waiting to leave the hospital after an overnight stay. It's something I do often and more and more I feel I need to stop. If I keep living in the past year (which by the way went unfairly quick) how will I ever move forward.

I still struggle with Chase's diagnosis. Everything happend so fast, I feel like I needed time for each thing to sink in before being thown into the next, but that didn't happen, and by now, I should get over it.

I need to focus on the now.

Chase army crawls like crazy. He's getting so good and so fast at it. He has also figured out that he can move past the living room. Last night he was "crawling" in the kitchen and the hallway. It's that left leg that he just hasn't figured out can work the same way as his right. His PT says he will get there and will figure it out in his own time.

The PT and Chase worked on climbing stairs last week. He rocked it. Only problem...his left leg, LOL.

I'm so bi-polar (not to offend bi-polar people) about everything that has to do with Chase. I'm either really happy or really sad about it. I have no inbetween. I'm happy with where his is at with his milestones, but I'm sad that he's not exactly where he should be. I guess I just wish I could have a view of the future, just to know what he will be like, what obstacles he will have to face, and what ones he will have overcome. I just want to be prepared.

Chase was having a rough time for a while transitioning to solid food...now, he will eat EVERYTHING!! He has been feeding himself by hand for awhile. It's fun to have dinner with him :)

Coming up:
1 year SB check
15 month check

-e




Wednesday, October 24, 2012

1 YEAR

We made it!

Chase is offically 1 years old. What.A.Year.

I mean, look what was happening last year.

It definitly has been a roller coaster of a year, filled with blood, sweat and tears. We've worked hard to get here.

Chase's stats for 12 months are:
Weight: 23.3lbs
Height: 30 1/4 inches
Head circ: 43 1/8 cm

He sure is getting big.

Chase has been army crawling. He just pulls himself wherever he needs to go and he is getting so fast at it.

His eating has gotten better too. He is starting to feed himself more and more now. It's really fun to watch him eat!


We have a lot to work on. Hopefully, we can get him caught up, but at the same time, we know he will catch up in his own time.

Coming up:
1 year SB Check, Video CMG, Muscle Test, Kidney US

15 Month check up.

-e

Monday, October 1, 2012

Happy Spina Bifida Awareness Month


October is Spina Bifida Awareness Month.

So, not only does Chase have Spina Bifida, he was born in the right month ;-)

This month, we'll be posting SB facts on our Facebook page.

Share SB facts. Spread awareness!!!!