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