Thursday, January 27, 2011

CeCe 2.0

That's what Brian is calling her. We went to neuro today and they needed to change her shunt the 2.0 setting. The numbers are a measure of pressure and when they dial it up, the shunt drains more slowly (which seems backwards to me). They started her at 1.5 then moved her to 2.5 (the highest) in the hospital last week because she had some fluid between her brain and the dura and thought she was being "over-shunted"...draining the fluid to quickly.

So, when they checked today, her ventricles were a bit bigger (again) so they decided they needed to meet in the middle to try and balance her out. They won't check the setting etc again for 6 weeks since they have already seen what the other settings will do...and also they don't want to expose her to anymore radiation then they have to.

I asked what "fluid on the brain" means for her future and couldn't get a straight answer. The P.A. said kids that don't have SB and don't have a shunt can have the same thing and it doesn't really mean anything significant to them. I need to do more research on this one.

On a side note, I have a co-worker whose daughter is in the ICU (and has been there going on three weeks now). She is 8 years old and is in a medically induced coma because they can't stop her unexplained seizures. Her name is Brooke and she needs your prayers too.

Wednesday, January 26, 2011

How did she get to be 9 weeks old?

CeCe had here re-scheduled 2 month pedi appt on Monday...He checked her out and said she's looking great. She has hit all her smilestones :) so far and she took her shots like a champ. She's up to 10lbs 12oz too...what a beast!

She also had her follow-up visit with Early Intervention and she brought a Physical Therapist this time around. She re-evaluated her since she hasn't been looked at since she was 9 days old at CHOP. She said she was impressed by her leg movement, but still needs work to loosen her hip, knee, and ankle joints. The knees were new to us, but just means we need to add another exercise to her rapidly growing repertoire. It's funny that all the docs say..."it will only take a few minutes a day if you add this or that" That time swallows up 24 hours VERY quickly.

Next up....neuro tomorrow....

Friday, January 21, 2011

Back from ENT...

The pediatric ENT has agreed that CeCe does have laryngomalacia and on a scale from 1 to 10...10 being the most severe...CeCe is a 9 or a 10. He basically had to re-run the endoscopy and we watched with him on the monitor as he looked around in there...weird to watch and see her crying from the inside out! He also confirmed that her vocal cords are working normally (which we thought had already been confirmed) but he wanted to double check as there was 20% of her having that issue as well. Please remember this has nothing to do with her SB...lots of kids have this.

So, where do we go from here? They want to put her on some very pricey medicine for the next 3 weeks as well as saline nasal spray to clear up her congestion...poor kid is having a rough time with this cold...and then we will go back for his re-evaluation on February 11th.

**Sigh**...if she isn't any better (or better enough) he will have to do a surgery on February 15 that will snip the area around the larynx and fix it that way....which of course means another hospital stay. We've gotten to know the nurses already...I'm not sure that's a claim to fame we really want to have. That's about it for now.

Tuesday, January 18, 2011

Deja Vu...2

So after some crazy potential diagnosis and treatments...Cece has been diagnosed by the Pulmonologist with larngynomalacia. Basically this is a "floppy airway" on her larynx causing her airway to be slightly blocked. They don't seem to plan on doing much right now with it. Most kids grow ou of this by the time they are 10-18 months. I cannot tell you how releived we were to hear this from her doctor. Just today they said (all which have proven to be false) she had vocal cord paralysis...she may need to have part of her skull removed to relieve pressure on her cerebellum...she made need a permanent trach tube....goodness gracious, what a day!

They are keeping her here overnight at least for oberservation as she still is has the Strider breathing issue...probably an upper respiratory infection...not enough to keep us here after that....YEAH!

Once agian...thanks to all my prayer warriors...God is good!

Deja Vu...

We are back in the hospital. CeCe started having breathing issues over the weekend and we took her to her pedi yesterday morning. He at first thought it was croup. But then he thought there might be a Spina Bifida connection and sent us straight to Levine' not pass go...even asked if we wanted to go in an ambulance.

We got to the ER about 10am and they did an xray of her head and chest and a CT scan. Thay also consulted with neuro and ruled out the shunt. They decided to admit her and we were sent back upstairs. Some of the nurses recognized us from her shunt surgery days...not sure if that's good or bad.

Since being admitted, they've given her 2 breathing treatments (her little chest compresses about 1-1.5 inches when she's upset and trying to breath in), xray of neck and side chest (this was awful to see) and a have sent an endoscope up her nose to look down at her upper airway (double awful to see). This is where they found something. The ENT said that her vocal chords appear to be paralyzed or partially paralyzed. BUT, he can't say if that's related to the virus, she has always been that way and now it's just surfaced, or if it's a connection to her Chiari malformation in her brain. So, he really just presented a ton more questions with very little answers. The pulmonologist will look at her today. She will have to be sedated so he can look below the vocal chords and see if there is any other kind of inflammation. They are also, of course, testing her for RSV, flu, and croup.

I'm just waiting to see the morning doctors now....

Sunday, January 16, 2011

CeCe's dedication was today...

We had such a great day today with family and friends. CeCe was dedicated at church today. Below is the text from our part of the service...

When we first received CeCe's diagnosis last June, we were devastated. We knew nothing about Spina Bifida...we didnt know that it is the #1 permanently disabling birth defect....we didn't know anyone that had ever had it.....and the picture the doctors painted was bleak. They told us things that no parent wants to hear about their unborn child. But God was there even then...He was working to teach us patience. He was testing our resolve. He was testing our Faith.

Brian and I rushed straight to Doug's office after leaving the doctor's office that day last June trying to make sense of it all...trying to figure out...why her, why us, why now? Doug said something that day that will be forever burned into my memory...he prayed with us that this baby would "confound" her doctors. I don't know if thay have felt so confounded, but I know we have. We did the only thing we could that day...We gave her to God.

Fast Forward to today....while there is still so much of CeCe's story yet to be told, she is here with us today as a testament to God's grace, his will and the prayers of his people. I asked Brian this week to pick one verse that he thinks sums up his feelings about today and he chose John 13:34-35 A new command I give you. Love one another. As I have loved you, so you must love one another. By this all men will know that you are my disciples, if you love one another.

We will never be able to begin to thank you all for your love, prayer, and support for Little Miss CeCe. We have felt wrapped in your and God's warmth from the diagnosis. What a blessing we have been given to be part of such a church body.

CeCe has had people all over the world prayng for, friends, and even strangers. They have followed her story and our journey and she has touched people's hearts in a way we never knew was possible. We truly, with all our hearts believe that she is a direct result of the prayers that have been lifted up to God. HE made her prognosis better and better at each doctor's visit. HE calmed our minds and soothed our thoughts. HE allowed her doctor to exclaim...:this child will walk!". The bible verse I picked has been guided me throughout this time is...Isaiah 40:28-31 Do you know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew thier strength. They will soar on wings like eagles; they wil run and not grow weary, they will walk and not be faint. This is the prayer I pray for my daughter, my miracle.

You are truly God's people and know that as you have been there for us, we promise to stand by you...know that we've got your back.

Thursday, January 6, 2011

17, I counted.

That's how many Doctor's appts./hospital visits/tests etc...since we've been home. And, yesteday was her repeat audiology newborn screen...and....SHE ROCKED IT. In fact, if she didn't pass with high enough numbers, they would have sent her for another diagnostic test at another office and yesterday visit would have been useless. But...nooooooooo! The doc said her numbers came back very quickly and she passed with flying, we are DONE with that guy! Mark him off the list!

We have a follow up with the Early Intervention (EI) people on the 25th and she has a followup with the neurosurgeon and an ultrasound next Monday. This appt will double check that her shunt is set at the proper pressure setting.

She's also going on a field trip tomorrow so the girls at my work can get their hands on her....hi, ladies! Remember to use your hand sanitizer!

Monday, January 3, 2011

The Trial is over....

I don't know why I am in such shock about this, but the trial we participated in ended right before Christmas...way early.

Every 6 months, the NIH (or something like that) comes in to review the data of the study to see if there is a clear answer as to if the pre-natal or post-natal surgery is better. It seems that they decided the benefit vs risk of the pre-natal surgery is worth it. When I first heard this on Friday (as rumor) I was really taken aback...kind of upset actually that we were told just 6 weeks ago that there was no clear benefit to those kids that received the pre-natal surgery vs those that didn't...and then BAM! the trial ends early (they only got to 183 of the 200 particpants) and they are done.

We will still be going back for the 12 and 30 month evaluations, but no new folks will be allowed to participate. Another weird thing is that people can now CHOOSE the pre-natal...we didn't have that option. Brian says I'm crazy to be bugged by this, but I will probably always wonder. God has watched out for us through this entire process and that's all I really need to know.

I spoke to the study coordinator today about all of this and she said they are going to be sending out a letter to all the 183 families to inform them of this once the data is ready to be published. It has to be "out" before they really make it public, so for now, it's just word of mouth that it's over. I hope that "they" will now take some of the money and put it towards reseach for those kids that are already here...wouldn't that be awesome.

CeCe has her Early Intervention evaluation tomorrow and her repeat audiology testing (she failed right before we left Philly) on Wednesday. I guess that's it for now....

By the way...Happy New Year!