Count of Chicks for Children

God's Plan For Us

This is our journey - God's incredible plan for our lives. When we followed the moving of the Holy Spirit, He opened the windows of Heaven and poured out upon us blessings we never dreamed of! Indescribable joy!

" For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Tuesday, August 12, 2014

Nini is Home!!!!

Nini is home and doing well. Our biggest challenge is keeping her from doing too much ;-)
Thank you to all who prayed  for Nini during her hospital stay. We'd ask that you continue praying that the tethered cord release will take care of some of the problems she has been having. Blessings, cindy
 
 

Saturday, August 9, 2014

One day after tethered cord release

Today has been Nini's roughest day since we came into the hospital on Tuesday. She has complained about pain and threw up again. We've had quite a bit of tears. She is on a muscle relaxer, pain meds, nausea medicine, and antibiotics. It's a balancing act trying to decide whether she is having spasms or pain, and what to give when. Since she can't explain exactly what she's feeling (when you only have a year of English under your belt it's hard to describe what is going on) it makes it more difficult to know how to treat. As usual, the staff here at Kosair is wonderful and go above and beyond in making her as comfortable as possible. Her headache brought a visit from a doctor immediately because it can be a red flag that there are problems with spinal fluid leaking. All was well in that area thankfully.
Her best medicine came when her sisters came to visit. She hasn't seen any of them since Tuesday and that's been hard on her. Since she was in PICU until surgery yesterday, we haven't brought them up (we live an hour away from hospital). It's been especially difficult for her to be away from Ximi, and I've heard quite a bit about how much she misses Ximi. She's shed tears everyday for her.
When it was time to say goodbye, neither one wanted to leave the other, so we got permission for Ximi to stay up here with us. Since Ximi will be sharing the window seat with me, I'm hoping she has a good night sleep ;-)
Tomorrow morning the physical therapist will come and get her out of bed and walking. As long as there are no problems we'll get to go home tomorrow. Blessings, cindy

Our little Peanut Butter(Ximi) and Jelly (Nini)


Xiaoyun, Virgil, Nini, Ximi, Elli and Enya

Friday, August 8, 2014

Tethered cord release surgery



Nini's tethered cord release went well. She has had some pain and threw up once after she was back in the room. Her nurse said that every tethered cord release she has ever treated threw up afterwards. The doctor said that she could have muscle spasms and pain from incision.  It is now a wait and see as to whether her symptoms improve. It may be that they just don't get worse. There's just no way to know right now. She must remain flat for the next 24 hours. Continued thanks for the prayers!!
Aren't they beautiful with their shaved heads?!!!!! Taken 3 hours after surgery. Nini is so proud to have a haircut like her baba's.

The incision was in her lower back. About 1 1/2" long. She is laying on her side in this photo and the blue is where she was marked prior to beginning surgery.


Thursday, August 7, 2014

Tethered cord release surgery tomorrow

Nini's pressure is good, which means no shunt. She will have surgery tomorrow morning at 9:00 for the tethered cord release. They will leave the EVD in until after the surgery. They will keep drain open during surgery so there is little risk of the Chiari causing any pressure issues during the surgery.



Nini was a trooper today. We went ahead and shaved the rest of her hair. There was just no way to make it look right without starting fresh. As I cut and shaved her hair, it was all I could do not to cry. There are little ones laying in the rooms all around Nini's that are battling cancer and are losing their hair because of that. It broke my heart to think of them and their parents. I cannot even imagine how difficult it must be for them.

After Nini's hair was cut (which, by the way, was harder than giving an eel a haircut!), I held her up to the mirror, half afraid she would be upset. She looked at it and said, "So pretty! I like my Baba haircut!"  (Virgil keeps his head shaved) She is such a sweetheart!!!! Of course, the nurses who were in here and I were bragging about how beautiful she is, and it is so true- both inside and out!

The hospital gave us some knitted caps and headbands that people had donated. If you happen to be one who makes these hats - THANK YOU!!! They are cute and just perfect for little girls who have no hair.

Continued thanks for all the prayers!!!

Wednesday, August 6, 2014

Nini- Ventriculomegaly/hydrocephelus, tethered cord, Chiari 1 Malformation, Cerebral Palsy

I wanted to share what is going on with Nini in the hope that it will be an encouragement for someone who has adopted or is considering adopting a child with the same issues. There is a lot of unknowns when you adopt and if our journey through Nini's treatment can help someone else, that would be wonderful! I knew NOTHING about any of Nini's conditions until we found out she had them. It is a learning process, and as you will be able to tell from my very basic descriptions, I have no medical background.
Nini had surgery yesterday to insert an External Ventricular Drain to see if she has hydrocephalus or ventriculomegaly. In simplified terms (the kind I need!), they are trying to decide if she still has pressure inside the skull (hydrocephalus) or if there was pressure in the past but only enlarged ventricles now (ventriculomegaly). A scan didn't show any pressure, but she needs to have a tethered cord release (if you think of the spinal cord as a rubber band, it should look like it would if band was held in your hand. When it is tethered it is like taking that rubber band and pulling it taut. Somewhere in the lower area of her spine,  her cord is being pulled). If she had a tethered cord release and there was pressure in her brain, it could be extremely dangerous. Thus, they put the drain in yesterday and will monitor it for 48 hours. If the EVD shows pressure, she will have a shunt inserted on Friday. If there is no pressure, she will have a tethered cord release on Friday.


Her EVD surgery: bur two holes in skull, insert small tube in one and bring out through other hole. Close the first hole up with a few stitches. The tubing is attached to a drain/monitor. They open two valves in tubing up, once an hour, to measure for pressure. The number needs to be under 20, and so far the highest its been is 12. While the valves are open she needs to remain in the same position until closed again.

That surgery went well. She did end up with a really bad haircut. I haven't had the heart to tell her yet. She loved her beautiful hair, and until recently, it was very long. I haven't decided what we will do about her hair after the stitches heal, but am thinking it will be short for quite a while and she will have lots of hats if she wants them.

Nini also has a Chiari 1 malformation. The cerebellum has 'tonsils' that are located above the spinal cord. Some people's tonsils hang down further than they should and it hinders the flow of the spinal fluid. This has caused neck aches, gagging, and loss of muscle coordination for Nini. Right now it is a wait and see whether she will have to have surgery for this in the future.

She's slept well last night and has done well today. The next surgery will be Friday morning. We appreciate your prayers!!