Whitney in Action

We are still just waiting for Whit's Dec. 2 appointment with the Neurosurgeon. Since she was diagnosed with Hydrocephalus, her Physical Therapist thought it would be a good idea to pull her out of her horse riding (hippotherapy) until we know exactly what we're dealing with. So, in the meantime she was able to go to the rehab center today to meet with her PT. Usually she comes to our house, but I'm so glad we got this opportunity. They have some of the coolest equipment there and Whitney actually did really well. I recorded 4 videos. Take a look...

External Hydrocephalus and Neurosurgery Appointment

This has been a long weekend for us. After receiving the CT scan report on Friday stating that Whitney had Hydrocephalus and not being able to talk to a doctor, we finally have some answers. What Whitney has is External Hydrocephalus which apparently is less alarming than the typical Hydrocephalus I had feared. This is an answered prayer. She has fluid on the outside of her brain between the brain and skull as opposed to inside the ventricles of the brain. From what I understand this type of Hydrocephalus typically does not require the placement of a shunt. However, most babies that develop EH acquire it within the first few months of life. Since Whit is apparently just developing it they aren't sure that hers will definitely not require surgery or draining. They did tell me that we will most likely need more tests/scans to compare over time and determine whether the fluid is decreasing or increasing. She has an appointment scheduled with a Neurosurgeon for December 2nd. She is on a list for cancellations, so it could be sooner. I still have so many questions, so I'm hoping it's sooner.

When I spoke with the nurse from Whit's Neurologist's office she said a few things that concerned me. She said that sometimes when the onset of these symptoms is later (which is the case with Whit), that it can often be related to "a deterioration of the brain or shrinking brain." That's definitely not something I wanted to hear. She said it can also be that her skull is growing much more rapidly than her brain so the fluid is filling in the spaces the brain is not. Again, that is not something I want to hear. However, we don't know certainly that either of these is the case. We will just continue to keep praying that by the time we see the Neurosurgeon in three weeks the problem will have already improved. Whitney has experienced many miracles, so it wouldn't be a first. God is really watching after her.

So, for now, we try to stop holding our breath. I have been catching myself handling her more carefully the last few days and being extra careful not to bounce her, etc. for fear that I would mess something up in her little head. I know that probably sounds crazy. We have all been giving her a little more attention and Daddy even gave her a pink and white polka-dot pedicure! (see below)

Whitney and I will be heading to Long Beach early Thursday morning with Gigi, Aunt Debi, and Uncle Don-Don to see Taylor. Taylor was nominated for Miss Greek at CSULB and we are taking Whit to see her first beauty pageant! The doctors have all said that flying in an airplane is fine which was my main concern because of the pressure changes, etc. We'll update soon. Thanks again for all the prayers. We will continue to need them.

CT Scan Results

Well, we are waiting as patiently as possible for Whit's doctors (Geneticist, Neurologist, etc) to call us back with an explanation of the findings from her CT scan done on Thursday. Here's the story...

I always request a copy of all films, reports, etc. whenever Whit has something done because I was told from the beginning that I should be keeping records of all her health conditions to share with doctors or anyone else who needs this information. I have an accordion file full of every test and procedure that any of her ten doctors has performed or ordered. So, before leaving the hospital on Thursday following her CT scan, I ordered copies of her scan on disc and her report from the Radiologist. The disc was ready immediately, but the report was not ready. So, on Friday morning the hospital called me to let me know that the full report was ready for me to pick up. I picked it up shortly after the call. Obviously I wanted to know what the findings were, so as soon as I got back to the car and buckled Whit and Ry in their car seats I began to read. Then the tears started flowing. There were a lot of terms I didn't understand, but what I did understand was "increase in subachranoid space near the convexities" and "enlargement of the basilar cisterns" as well as "ventriculomegaly" and "cavum septum vergae." The word that stood out though was "HYDROCEPHALUS."

I know what hydrocephalus means. It means too much fluid around the brain. I also know that it can cause brain damage and even death if left untreated. I know that most people with hydrocephalus have to get a shunt implanted into their skull/brain to drain the excess fluid and that the shunt will most likely have to be replaced many times over their lifetime. What I don't know is how severe or mild her case is. I'm most aggravated that nobody will tell me. Her Geneticist was out of the office on Friday. I called crying and talked to her nurse. She informed me that she would try to have another doctor read the report and call me back. Well, at 5:30pm she calls me to say that she has been unable to get a doctor to read the report and I'd have to wait until Monday. She informed me that she would fax the report to Whit's Neurologist, but again, it would be Monday before they'd be back in the office. All of these doctors are in the Ft. Worth/Cook Children's area, so I couldn't just run up there and demand to see them.

In the meantime (around 11:30 and right before they closed) I took the report and disc to Whit's Pediatrician in hopes that he would take a look and alleviate some of my fears. However, he was unable to offer much as far as how serious her case was. He assured me that it was not an emergency situation and sent me home to wait some more. You can understand my frustration...finding out my daughter has Hydrocephalus and not being able to get any answers as to what else could be causing it. I don't even want to speculate at this point. The report states, "idiopathic stomal hydrocephalus." I know that idiopathic means of unknown origin. So, what's causing the excessive fluid? And is this related to the opisthotomus episodes she's having more frequently and the eye swelling that won't go away? I would think so. Is she going to have to have a surgery on her brain? That scares me the most.

So, here we sit...waiting and waiting for someone to tell us what to do. Drain the fluid and see what happens? Is surgery on our horizon? How long does she have before the brain damage part sets in? What other tests does she need? MRI under sedation? Should she be restricted from certain activities? What about flying to California next week? Does the pressure in the airplane cause more pressure in her skull? Is she having headaches? And WHAT is causing it?

Will Monday ever get here? And why doesn't the rest of the world come to a standstill when my life has? We will continue to pray and pray some more. Please understand that I am still in a stage of confusion and fear, so this may sound as though I'm a nervous wreck (which I am). However, I typically come to grips with what is happening pretty quickly. Hopefully after talking to the doctors I will be in a better state to deal with all of this. Right now the focus is on watching Whit and giving her more love than ever before. We are also trying to focus on keeping things as normal as possible for the boys' sake. There's no time for me to cry or worry...

Opisthotonos and a big ol' head...

Whitney had a fun Halloween. She dressed up as a fairy and enjoyed handing out candy with Mommy. Things have been going okay with her in the last month. However, she has been having more of the "episodes" that her Neurologist tested for seizures several months ago. They do not think they are seizures, but aren't quite sure what's going on. She wore an oxygen saturation monitor for four days beginning last Friday. The results showed that her saturation levels were down in the lower 80 percentiles off and on during these spells. Her normal saturation is around 97%, but we are concerned that the test showed her stats dropping for up to 27 minutes at a time. Her pediatrician has decided to send her to another neurologist at Scott and White in Temple. We are waiting to hear when that appointment will be.

In the meantime, she saw her Geneticist today. After measuring Whitney's every body part, she relayed a concern about the size of Whit's head. Her body seems to be growing at a normal curve/rate. She continues to be anywhere between the 25th and 50th percentile for height and weight. However, her head growth has gone from the 90th percentile up to a number that is nowhere on the chart. It is huge. Her doctor believed that those measurements coupled with the Opisthotomos episodes (back arching she does all the time) and her constantly swollen eyes constituted the need for a CT scan. So, we will be having her cat scanned in the next few days. We will be anxiously awaiting those results to see if anything further needs to be done at this time. I did not ask a lot of questions because, quite frankly, I'm scared. I choose to assume the best, that nothing is wrong with my sweet baby. I have no idea what they'll be looking for or what she thought might be going on. I'm just going to continue to have faith that she will be just fine because God has shown us that she is a warrior and that He is in control. I'll update when we know more. I also have some video of Whit's Opisthotonos episodes, but haven't been able to post it on here. I will try again next post.