No Shunt for Now!

Whitney had her MRI under sedation on Friday. We arrived bright and early at Cook Children's. They allowed me to stay with her until they put her IV in. We were taken to a room where they put a gas mask on her. She breathed in a few times and her little eyes rolled back and she was out. After that they gave her some meds through her IV and she was out for over an hour for the MRI. After about 1.5 hours we were called to the recovery room where they allowed us to hold her. She was crying, but soon fell back asleep in my arms and we were told to allow her to sleep it off. I was concerned because the last time she was sedated she spiked a high fever. However, the nurses and Anesthesiologist seemed to think it may have been due to a drug they gave her to dry up secretions which they did not give this time. I guess that was right because she did not get a fever this time. They told us that her stats did drop a bit at first, but they gave her something to bring them back up and she was also given something for nausea afterward due to her gagging. She was pretty congested after she woke up from the breathing tube, but quickly coughed it all up and accepted some Pedialyte in her sippy cup. We were in recovery for about an hour or more.

After they released us we saw the Neurosurgeon. The Neurosurgeon we saw on Wednesday was in an emergency surgery, so we saw a different one. He viewed her MRI and compared it to one that was done last December. He showed us the pictures and explained everything. He was great! He explained that Whitney has had this excess fluid in and around her brain all this time, but it has not changed. In other words, it has not increased in amount. He explained that it is abnormal to have this excess fluid, but since it doesn't seem to be changing there is not really a reason to do anything about it. Apparently, what is abnormal for most people is "normal" for Whitney. She has an abnormally large head (way off the charts and the same size as my head). After looking at the pictures, we saw a normal brain which is gray with brain matter and a small amount of white for fluid. Whitney's brain has the gray matter, but there is fluid/white all in the crevices throughout the brain with a large accumulation of fluid inside and around the ventricles (which are larger than average) and around the outside of the brain. The doctor said as long as the fluid amount isn't changing significantly, then there's probably nothing to worry about. He did inform us that she probably shouldn't be a pro football player. I guess we'll have to rely on the boys to fulfill that dream!

Another thing the doctor said was that there's no way to know how smart/intelligent/mobile a person is going to be by looking at their brain anatomy. He said he's seen some MRIs that show missing pieces of brains and show no reason for life to exist and the people can be perfectly normal. He's also seen some anatomically perfect brains on patients who are completely mentally and physically disabled. There's just no way to know what to expect. Only time will tell. We are supposed to keep a close eye on her head circumference measurements and watch that they do not show a steep upward slope, but stick to a normal curve although the curve will always be way above the lines of the graph. A sharp increase in head size could mean that the fluid is increasing too fast and that would mean she needs to be reevaluated as soon as possible. We were also told to watch for abnormal vomiting or fever that does not seem to be related to a standard illness.

In the meantime, we have taken Whitney to a different Pediatrician who we feel is more aware of chromosomal abnormalities and was recommended by her Physical Therapist. We love her and feel that she will be helpful in watching Whit's progression with us and helping us to see any abnormalities that might need further investigation. She has scheduled Whit for a swallow study, but we are going to call Monday and request to have it done at Cook Children's. It was scheduled to be done in Abilene, but recently we were encouraged to try to have all procedures done at Cook to allow her specialists better access to her records. I also always feel much more comfortable there just because they only deal with kids and are so good!

So, in summary, Whitney does not need a shunt for now. It is unclear if she ever will or if anything will ever need to be done to her brain. For now, we are just so thankful that we have escaped the possibility of brain surgery and we will continue to pray that it will stay that way. Thanks again to everyone who prays for our little girl and for all the kind words. It is amazing to us when we see people we don't even know who have heard of our little girl. We introduce ourselves and they say, "Oh! You're Whitney's parents!" You have no idea how special that is. It is so encouraging that there are so many people watching her story and keeping up with her progress. We are humbled by the many messages and emails we receive from people we know well and some that we haven't heard from in years. They are all welcomed and appreciated. I wish I had the time to sit down and respond to each of you. For now, thank you.

MRI Scheduled for Friday

We met with Whitney's Neurosurgeon today and he has scheduled her for an MRI Friday morning back in Ft. Worth. He explained that the hydrocephalus shown on the CT scan was both external and internal. He said that her ventricles were enlarged and that if the MRI shows what he thinks it will, she will need a shunt. We will know more on Friday. Whit will be sedated for the MRI and they told us to plan to spend most of the day at Cook Children's. We will meet with the Neurosurgeon after the MRI to discuss our options. If surgery is required, he told us it will be sheduled soon. Thank you all for your continued prayers. We are scared and anxious for Friday.

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.

Static Encephalopathy

Whitney was officially diagnosed today with Static Encephalopathy. This is a condition of the brain that is similar to Cerebral Palsy. We saw her Neurologist today and he explained that her brain condition will stay the same (static) meaning that it will never get worse or better. However, she will learn to do things, just at a slower rate than the average child. For example, she started sitting up on her own at 13 months as opposed to about 6 months for the average child. She is still working with her physical therapist twice weekly and a speech therapist once weekly. She will also begin Hippotherapy (horses) next month. We are excited about that.

Having a "term" to call her problems is somewhat of a relief to me. It has been so hard to try to explain to everyone what all is wrong with her. Simply saying that she has a chromosome disorder doesn't tell much, but now that I'm able to put a name with her condition and explain that it's similar to CP I think it will be much easier for people to understand. Although very sad to hear that our baby has a definitive diagnosis of a neurological problem, we are just reassured that now we know exactly what we are dealing with and sort of have a better understanding of what to expect in the long run.

On a lighter note, Whitney also saw her Urologist last week. As you may remember, she was diagnosed with bilateral 4th degree kidney reflux about six months ago. Well, at her appointment last week they did a VCUG procedure again. That is the one where they insert a catheter and shoot dye into her bladder to see if it backs up into her kidneys. We were elated when they told us that they saw NO SIGNS of any reflux in either kidney! Her doctor said that doesn't mean that she is completely clear, but going from 4th degree reflux to nothing visible on the x-rays is huge! He was very pleased. We will go back in 6 months for another ultrasound just to keep an eye on her little kidneys. She also saw her Plastic Surgeon today and he was happy with the cleft repair she had in April. He wants to see her back in 9 months to check on speech-related issues. He also mentioned that he thinks her eye problems are most likely due to the tear ducts still being blocked. So, we will be seeing her Opthalmologist again in a few weeks to discuss a possible second eye surgery. Ugh.

To give you an idea of where Whit is developmentally, here are a few things she has conquered recently. She is 15 months old. She is able to sit up on her own and play with toys. However, she is not crawling yet or pulling up or standing alone. She is also not able to get herself into a sitting position from her tummy or back. We have to prop her up and walk away. Once she falls, she stays down until we help. She does not feed herself or even try to put things in her mouth without help. She will not hold her own cup/bottle. She is only eating two baby food meals a day and her main caloric and nutritional intake comes from her formula. She is not even close to being ready for solid foods or chewing. She holds food in her mouth, but does not chew. She swallows just fine. Whitney can say "ma ma" and she can tell you what a kitty, doggy and monkey say although sometimes these animal sounds get mixed up. She also gives high-fives and points to her nose, although it takes quite a while for her to process the request and make it happen. She has started a new game where she picks up toys and throws them while laughing. We pick her toys up and give them back just for her to throw them over and over again in excitement. For the average baby, this might become annoying, but with Whitney it's considered therapy and we are all just so amazed that she can do these simple "normal" things. She is also perfecting her "patty-cake." She used to try so hard to bring her hands together and then shake. Now she is able to get her hands together and her whole upper body swings side to side as she works to make a sound! It's so cute. It still cracks me up that when Jason asks her to say "da da" she says, "ma ma!" What a character.

Finally, Whit was in a parade this past weekend! We were asked to ride on the float for the H.E.R.O. program. That is the hippotherapy program that she will begin next month. It stands for Hendrick Equine Rehabilitation Opportunities. Some of the kids who rode with us were more severely disabled than Whit, but it was nice to meet other people who have children with disabilities and see how they do it!

I often have people ask me, "How do you do it?" I guess they are referring to the fact that not only do I have a disabled child, but I also have 3 other young children and a husband that is gone a lot. My answer is this....If you were in my position, you'd understand and you'd do it just as well as I do. You'd try your hardest to stay positive for you kids and husband and you'd bust your butt to make sure your baby got the best care available no matter the cost. That's what any parent tries to do and it's no different for us. To put it simply, I'm not a hero, Whitney is.