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.

Summer 2009

It's been a while since I last posted. We have been busy this summer. Whitney has enjoyed being at home the last couple of months with her brothers and has done some traveling. She also celebrated her first birthday on May 29th with a birthday party at home with her grandparents and family.

We started our summer with a trip to California to see Taylor. We flew to L.A. and stayed in Long Beach. While in California we visited Disneyland, Universal Studios and did a lot of sight-seeing. Whitney did really well and had so much fun. She enjoyed being strolled around and didn't complain much.

We also took a trip to the beach. We drove to Galveston in July and had a blast. Whitney loved the beach. We took her playpen and she played and napped without complaint under the pop-up canopy that we brought for shade. The breeze from the ocean kept her cool and she had fun watching the boys play in the sand and fly a kite.

Whitney has 12 teeth now and hasn't complained about that either. I believe she has a high pain tolerance which is a blessing at times. However, it's hard to know when she's sick or hurt for the same reason. She began sitting up without support at 13 months and will now sit and play with toys for long periods of time. This is great because the boys come in and out of the living room and play with her too, so she is always laughing with them. She has also learned to give a "high-five" and can tell you what a puppy dog, kitty cat and monkey says. "Mama" is still her word of choice, but who can blame her? She is great at immitating sounds and has even started clapping and dancing when she's excited. She is still spending up to an hour a day in her standing frame and received her leg braces in July which she wears when practicing her standing. They are pink, so they go with everything! :)

We are continuing to work on standing and crawling, but she's very content sitting and playing for now and gets around just fine by rolling. Whitney will see her Plastic Surgeon, Urologist, Opthalmologist and Neurologist in early September for check-ups. The only concern we currently have is with her eyes. Ever since her cleft repair and tear duct probe surgery in April her eyes have been swollen and red constantly. We have put her on Zyrtec assuming that it's allergy-related, but still have not seen much improvement. The tear duct probe doesn't seem to have corrected anything. She still tears all the time. Nobody seems to know what is going on. We will keep searching for an answer though.

School is starting for the boys on Monday. Hunter will be in third grade, Chase will be in Kindergarten and Ryder will be attending daycare full-time. Therefore, it will just be Mommy and Whit at home for several hours each day. Neither of us are complaining! We enjoy our time together and I'm excited to be able to make time for just the girls for a few months.

So Much to Tell!

A lot has happened with Whitney since my last post. Whitney had her cleft palate repair last month and did great. She stayed at Cook Children's 2 nights to make sure she was recovering well before we were released. Shortly after the surgery she developed a high fever and also needed some extra oxygen, but quickly recovered like a little champ. Daddy, Gigi, Aunt Debi and I were there for the surgery and all went well. They also probed her tear ducts because her eyes were always mattering/watering and we hoped that would help. However, I now believe that she just has bad allergies because I recently started her on Zyrtec after her eyes continued to drain and she seems to be doing much better taking the allergy medication.

Her cleft repair caused her to have some issues with eating at first. We used the zip-n-squeeze bottles and she didn't mind them at all. In fact, we thought that she did better with them than her regular Pigeon bottles. I wish we'd started using them sooner. She also had to wear arm splints called 'No-Nos' for 3 weeks after the surgery to keep her from putting her hands in her mouth. This made sleeping difficult because she relies on her thumb to comfort her and sleep at night. However, after about 2 weeks, she was doing fine and is now sleeping through the night again. As for feeding, we are just now starting on baby foods. Until now we were unable to feed her baby food because the food would come up immediately through her nose due to the cleft. Since we waited so long to start food, she is having a hard time adjusting and we are hoping the Speech Therapist who will begin coming this month will help us teach her to eat. She is doing just fine with her formula and is now exclusively taking a Nuby sippy cup. She loves it! It's sort of hard for me to get rid of all the baby bottles in the house. It's been almost 9 years since I put them away!

Whitney also got her standing frame last week. At first, she wasn't crazy about it, but now she will stay in it for about 20-30 minutes just playing which is great. (see pics above). She is also grabbing for toys and throwing them! This is a huge step for her because it took a long time for her to be able to reach for things. Whitney is about equivilant to a 4 month old baby developmentally. She can sit with minimal assistance for about 30 seconds at a time. She is actually better at standing with assistance than sitting. She is rolling ALL over the place! This is her preferred method of transport :) Whitney also has favorite toys (the see-through blocks with surpises inside) and 2 favorite songs. She loves it when we sing "Jesus Loves Me" and "You are My Sunshine!" These two songs make her smile the most and gasp in excitement. She is saying "Mama" and tries to wave Bye-Bye. We are working on Pat-A-Cake, but she gets her hands together in front and starts to quiver. We aren't sure why, but think it's probably just a neurological thing that will eventually fade away since we were reassured she isn't having seizures.

Whitney's 1st birthday is coming up on May 29 and we are so happy with all that she's accomplished in her short little life thus far. She has come so far and is improving each day. We feel like the most blessed, lucky parents on Earth to have such a little fighter. She has continued to amaze us each and every day and we are so anxious to see what the next year holds.

Whit's First Easter

Whitney had a great first Easter with lots of goodies and a visit to see the Bunny. She wore a beautiful Easter dress that Gigi bought.

We are off to Fort Worth tomorrow for her pre-op appointments and surgery on Wednesday to repair her cleft palate and probe her tear ducts. We will post more when surgery is over and we have returned home.