Updates Part 2....

7/12:

Not a whole lot to update with Cyndey today. We are still looking for answers to her regression in grip strength and response to us. We have seen some frustration and emotion from her. We are trying to keep her spirits up with silly jokes and talking to her about daily things.

We brought up Nathan and Lily for a visit and that seemed to lift everyone's spirits. Cyndey was sad to see them go. After taking them for a hike and ice cream, I then spent the evening with them doing normal mom things. Things that are taken for granted sometimes. Things I may not always appreciate doing. It was nice to be out of the hospital, but a piece of my heart was missing.

Continued prayers the doctors can determine what is going on and that this be temporary and she overcome the set backs.

 

7/13:
Thank you all our friends and family from around the world. Your generosity that has been pouring in is greatly appreciated! The cards, donations of gift cards, meals, emotional support and helping with logistics of things does not go unnoticed. We have been able to focus our care on Cydneys needs and be here in the hospital to support her.
She is dealing with Posterior Fossa Syndrome. There is no determined amount of time it will last. She is non verbal, can not sit, or ...hold up her body on her own. She is weak, and dealing with pain. Since she can't communicate to us what is hurting it is a guessing game.

We are here for her and doing our best to remain positive and work through this hurdle. Encouraging her and explaining to her what is happening. She can understand what we say and has her sense of humor, laughing at our jokes and rolling her eyes at the bad ones. 😊 One day we will look back on this time and see how far she has come and how hard of a fighter she is.

7/14:

Hope: an inspirational message from the Fire Department located next to the Children's Hospital. This is the view we have from Cydneys room window. An everyday reminder to have Hope in a time of despair.

"It won't be easy, but it will get better" - Stacy Hogg

Each day, each small improvement extends that hope that she will one day be back to the Cyndey we know! ❤❤

7/17:

Taking each day in stride and celebrating the small improvements.

Cyndey's External Venticular Drain (EVD) was removed today! This had been in place since July 1, when she went into her initial surgery. It is used to help relieve elevated intracranial pressure when the normal flow of cerebrospinal fluid inside brain is obstructed. Her pressures have been in the goal range now for several days and after numerous MRI scans the doctors feel she is able to drain these fluids on... her own appropriately. The other positive here is it does not appear she will need a shunt.

Now that it is removed, we are one step closer to being transferred from PICU to either a general floor or the rehabilitation unit. Another 24 -48 hours more as she is weaned off the steroids, and we can move forward to continue her treatment.

She is also set to have a Spinal tap this week to determine if the cancer has spread at all. Praying for clear results there! ❤❤🙏

7/18:

Our Brave little fighter! Had a rough night Monday night, not much sleep and possible pain or frustration. It is hard to tell which, since she is non verbal right now.
We took her for a walk and that seemed to up her spirits and lead to a pretty good afternoon. Go to "stand" during PT, daddy played Stuffed Animal Jenga, and we got a hair wash.
This evening we are watching some low heart rate and higher blood pressure issues. Dr's are not too concerned at this point, but w...e are keeping a close eye on their trends tonight.

We celebrate each small improvement and encourage her through the struggles. Keep fighting as we move forward in this journey.

7/19:

Lab tests this morning showed elevated level of her Creatinine and BUN level, both affected by kidney function. As kidney function slows down the levels of these rise. The morning was spent getting labs drawn, urine analysis done, ultra sound of the kidney and bladder. The doctors also are concerned about dehydration due to taking off some water due to them changing the concentration of her formula. So they will be increasing her water intake as well as watching her labs throughout the day. One doctor also found a study for one drug they had her on, that lead to kidney injury. Cydney completed all her therapies and was once again exhausted by the end of the day. Hoping for a restful night.