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

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

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

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

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

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

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!!!!

11 Months = sad face.

:(

Already?

I'm crushed. Seriously. CRUSHED!
Where did my baby go?

What's new?

Chase can sit up from laying down. It's his new thing to do. He basically falls down to sit back up to fall down again. He is like a weeble wobble.

Eating has been going FABULOUS!! He eats everything we eat. We have family dinner together. It's amazing that a month ago, anything solid he would he, he would gag and throw up. Now it's like he's been eating solid food his whole little life!

It probably helps that he has 5 teeth! 5 teeth! It's weird to look at him with teeth.

No real crawling yet, but he's getting better everyday. He's starting to army crawl forwards bit by bit.

He healed well from his orchiopexy/hernia repair. We will see his urologist again in November.

I recently started another blog that's not so focused on C and more on just random topics that I feel the need to get off my chest. If you want to check it out, click here.

I mentioned in my new blog how different our life is now. Not only because we have a child, but it's more different than the average parent because we are special needs parents. B and I love our friends very much. I hope you all know that. We don't call, because, well....because we just can't. We have a different adgenda that people who are kidless. While bar hopping, concert going and sleeping until noon on a Sunday used to be our way of life (and there is nothing wrong with this), that time is now reserved for us to cuddle with our baby, work on eating food so he doesn't gag on it, helping him learn to crawl. He's a bit behind, so our extra time is devoted to helping him catch up.

We don't decline invitations because we want to, we decline because we have different responsibilities.

Our idea of a fun night has changed. Chase keeps us going. We get tired earlier than we used to so a fun night includes our jammies and our DVR.

Please don't be offended that we don't call. It's nothing personal. <3

Coming up:

MRI of spine/brain

Someones birthday? :(

12 month check up

Appointment with Dr Bowman (neuro), Dr Yerkes (Uro), and Dr Swaroop (Ortho) along with a muscle test, a kidney ultrasound and another Video CMG

Till next time

-e

10 months and a shunt check

Chase turned 10 months on the 19th.

We're offically in double digits. Nothing really has changed. He's still the same height and weight. He's still "army crawling" backwards and still prefers to roll.

We've recently started more solid foods. He didn't do so well at first, but the more we try, the better he does.

He likes to stand and he bears weight well, but he's not really pulling himself up on his own.

He's sitting up longer too!


On the 21st we got to see Dr. Bowman. His ventricles remain unchanged from his last visit in May and his pressure will stay at 2.5. She is please with how he is developing and states that he will develop at his own place.

We don't need to go back to see her until November and we won't have to have a repeate MRI of his ventricles! Overall it was a great appointment.

He will however be getting a MRI of his spine and brain before the end of the year.

Chase is also geting a stronger lens for his glasses as his perscription has changed.

Coming up:

Orchiopexy/hernia repair post op

MRI of spine/brain

Someones birthday? :(

12 month check up

Appointment with Dr Bowman (neuro), Dr Yerkes (Uro), and Dr Swaroop (Ortho) along with a muscle test, a kidney ultrasound and possibly another Video CMG.

Until next time
-e

Surgery update

Chase's surgery went well. He ended up having a large inguinal hernia and the sac was filled with CSF from the drainage of his shunt. I've read it's common for VP Shunt patients to get inguinal hernias like this.

He only needed Tylenol with Codeine after surgery and Thursday night. Thursday during the day, regular Tylenol worked well and Friday he only had one dose.

We stayed low key all week, jammie days filled with Finding Nemo, Octonauts, Mickey Mouse Clubhouse and other various shows on Disney Jr.

Thanks for keeping us in your thoughts.

Till next time.

-e

9 months...

Ok 9 months and a week and a half...sorry, lol.

We've been busy!!!!

Chase army crawls backwards to get to where he needs to go and rolls and rolls. He's all over the place! He is sitting better too.

At his 9 month checkup he was 22lbs 8oz and 28 1/2 inches long 2 weeks later at his preop he was 23lbs 1 oz and 29 inches long!

He's wearing size 18moths for clothes :( He's getting so big!!!

His first tooth is coming in! Its only about halfway out and he doesn't let me look at it. He always covers it with his tongue.

We don't have much new to update, it's been a low key month.

Coming up:

Orchiopexy tomorrow. 8:45am. I will post an update after he's out of surgery. I don't expect things to be crazy about it. It's an outpatient procedure, we're having it done at Lake Forest Hospital instead of Children's which is nice because it's definitely closer to home.

Eye Recheck - I feel horrible because I never really comment on his eyes and glasses. I feel that they are getting better, crossing less. He's still pulling them off.

Neurosurgery recheck - As usual, MRV then we see if his shunt gets turned up or down.

1 year birthday....what? 2 1/2 months away :(

Till next time
-e

1 year anniversary

And what a year it has been.

A year ago, I was pregnant, and we thought my son was missing part of his brain. I was angry. I was hurt. I was scared.

What were we going to do? No one knew what to tell us. No one knew what the outcome would be.

We had only a few days to decide if we wanted to keep our baby or terminate due to a disease.
This is a decision that someone does not prepare themselves for. No one should have to make this decision. It was the hardest decision of our life.

For two and a half months we had numerous appointments filled with MRI's, ultrasounds, doctor visits, blood draws. I ended up having gestational diabetes. I had to do daily blood tests. I had to watch what I ate.
I ended up being induced early because he wasn't growing.

For two and a half months, I cried. I worried. I was angry and scared.

And after two and a half months of fear, worry, anger, sadness, wonder and waiting...
I gave birth to a little boy with Spina Bifida.

A permanent diagnosis was a major curve ball. We weren't ready for this....


...but I wouldn't have changed anything for the world.




I'm glad we made the right choice.

-e

8 months old

Chase turned 8 months old on 6/19. Time sure has flown.

Not much new to tell, things have been going great!

We've had some firsts in the past month. We went to our first Cubs game, went to Chicago for fun for the first time too. We saw fireworks for the first time, he was amazed!

Chase is starting to sit up on his own. He's really getting fun.

He has a strap for his glasses now to help keep them on (he keeps pulling them off and we're on the second pair of frames).

We tried bananas! He LOVES them!!! We did not have any allergic reactions to them.

Coming up:

9 month checkup

Surgery: Orchiopexy August 1st.

Until next time

-e

7 months

Chase is 7 months old (as of May 19th).

He really is growing up so fast!! The time is flying by and before we all know it, I will be posting about his 1st birthday!

Chase has been holding his own bottle and sippy cups lately. He gets excited to see a sippy with handles and while he's still working on his aim and tilting back, I'd say he's doing pretty well.

He's sitting up more and more on his own. It's hard work, but he is getting better at it. He also tries to pull from laying down to sitting, but that silly belly gets in his way, lol.

Chase had a MRV and saw his neurosurgeon on May 22nd. His ventricles have opened a bit but are not as opened as she would like to see, so she turned his pressure down again. His shunt is now set at 2.5 which is the lowest it will go! We don't have to see her again until the end of July or beginning of August.

We had Chase's Early Intervention 6 month evaluation. He met the goals we set in December! Our new goals include rolling consistently, and sitting straight up unassisted.

Chase doesn't have and major appointments coming up soon. Just a eye recheck and then July will be his 9 month checkup and August will be his surgery (yuck).

Hopefully next month we will have more to report!

-e

A half of a year later....

And a few weeks. Sorry :)

Chase turned 6 months old on April 19th. Where has the time gone? My little man is not so little anymore, weighing in at 19lbs 8oz and 27inches long. He's also wearing 12 month clothes!

He's rolling and starting to be able to sit up for longer periods of time! He's been teething, but no teeth poking out yet. It's a great feeling to see how far we have come.

He had his urodynamic testing last month also. We recieved the results of that yesterday: (ahem)

THERE IS NO NEED TO CATH HIM OR ADMINSTER MEDS!!!!

He emptys his bladder well. We go back for a recheck in 6 months and depending on how that looks, his urology visits will drop to yearly!!!

However.... :-/

Chase's testicle still has not decended so his urologist has decided to surgically intervene. The good news is, it's an outpatient procedure and can be done a Lake Forest Hosptial which is a lot closer that Children's, especiall since Children's is moving in June.

We see his neurosurgeon on May 22nd. He will have his routine MR Ventricles and we will see if they are still small and we can turn his shunt down again or if they are stable.

In some other news:

Our friend Mark is in a contest to win a new van for him and his mom. If you would like to vote for him, please do so here. You can vote once a day and if he and his mom win this van it would be a huge help!!!

There are 2 blogs that I have been reading about two little girls that have some very grave diseases Nora who has Trisomy 18 and Avery who unfortunatly lost her battle to Spinal Muscular Atrophy on April 30th. Please read and share therr blogs to raise awareness about their diseases!

We'll update after our neuro appointment on the 22nd!

Make sure you check our YouTube page for new videos

-e

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
-e

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:

-e

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