Watch Out....She's on the Move!

Whitney has become much more mobile lately. She has got the army crawl down and will not stay in one place. She is all over the house. As much as I'd like to keep her off the cold tile, she insists on scooting around on it. She literally cannot be left alone for more than a few minutes because she will get into something! You have no idea how happy that makes me :) Her favorite places to go are the laundry room and the pantry. She always finds something fun to play with on the floor in these rooms. She has also learned to stay away from Lilly's cage (our new puppy). We keep Lilly in an icrate in the kitchen when it's too cold outside and she is quite the nipper. She has some sharp little puppy teeth. Whitney has learned not to stick her fingers in the cage because we have warned her that "Lilly bites!" She will creep over to Lilly's cage and get really close, but then she looks over at us as if to ask, "Does she still bite today?" We say in a low voice, "Lilly bites." And she backs away and scoots into another room! I took a short video of Whit army crawling in the kitchen...

I have also been working with Whitney on walking with a gait trainer that her PT let us borrow. It is so exciting to see how much she's improved with the gait trainer. She used to cry a lot when we used it, but lately I can't keep her off of it! We keep her equipment in the dining room and she will scoot into the dining room and try to use the gait trainer without us! I have had to watch her more closely because she hasn't gotten the hang of pulling herself up unassisted yet and I'm afraid she's going to hurt herself without our help. She is really acting like she's ready to start learning to walk with the gait trainer, but I really want to get her a gait trainer like this Kid Walk that she can use on her own without us holding her hands in place and keeping her from falling. As you can see in the video below, she is still really unstable in the torso and with the Kid Walk gait trainer, she would have straps around her torso and a piece in the center crotch area that would help stabilize her and give her the feeling of independence that I believe she needs to start moving on her own. I am going to talk to her PT about either borrowing a gait trainer similar to the Kid Walk or finding help to purchase one of our own. I am still fighting hard to find help with the expenses of medical equipment, but am having no luck so far. She is also due for some new orthotic braces and I'm afraid she is going to need the taller version next time. She has begun turning her left knee in when standing with help whereas before it was only her feet rolling in. The equipment is all very expensive, and even with insurance we are still responsible for a large chunk of change.

We are also still working on getting Whitney a stroller that is adaptable to her needs. I was told about a stroller for special needs children that is similar to a real stroller, but with more support. However, I have been researching and have decided that it would be better to get a stroller that is also the right height to push up to a table and be used as a highchair. This way I could use it at restaurants, etc. We are currently carrying around a stroller and a portable high-back high chair in our car for her to use in restaurants. She is unable to use a typical restaurant high chair because they do not have a back on them and she tends to throw her head back randomly. We are using this high chair, which works great for now, but she is very close to outgrowing it. That is why I'd like to purchase a Leckey Squiggles Seat with Safari Tilt base. It offers the support she needs and is at the appropriate height for eating at a table. Whitney will be 2 years old in a few months and I'd like her to start "sitting" at the table with us. I can't believe she's about to be 2 in May!!! That is so crazy. She's still such a baby to us and I'm loving every minute of it!

Cook Children's has also moved her swallow study from February 4th to February 9th. This will work better for us because Jason will be off work that day and won't have to find someone to trade days with him. I also want to speak with their Speech Therapist who will be there for the study and ask what other services are offered for kids that are this far behind with eating. As you can see in pictures, Whitney is not missing any meals, but I firmly believe the earlier we can get her feeding herself and chewing food, the better her chances will be in the future for regular eating habits.

We are still working with her standing frame too. It is also made by Leckey Squiggles. I have loved this standing frame because she can stay in it for up to an hour a day. I try to play her sign language DVDs while she's in the standing frame. She's a captive audience during this time and I'm hoping she's absorbing the info. I've even got the boys watching the DVDs and working on signs with her. They love it!

There are also many other therapeutic treatments I have come across while reading other children's blogs such as Thera Suit Therapy (VERY expensive) and Hyperbaric Oxygen Therapy along with many other programs that seem promising. However, after reading these blogs about other children it is apparent that most of them have help from either government agencies or private donations. As I said before, we have been denied by every program that I have applied for. But, we will keep trying and find a way to help Whitney by offering every piece of equipment and therapy that we can.

Swallow Study Scheduled

We got a call today from Whit's Pediatrician's office. We finally have a swallow study scheduled at Cook Children's Hospital on February 4th. I am very anxious to find out what it shows. Whitney is still unable to eat anything but pureed baby foods. She can't even tolerate regular food that has been mashed in a food processor because it's too clumpy. Some of her baby foods even have to be "watered down" with milk or formula. She gags way too much for a child her age (19 months). It is frustrating not to be able to put food on her highchair tray and allow her to feed herself, but that is but a minor roadblock in the big picture. I just want to be assured that there's nothing anatomically wrong with her, especially since she had a cleft soft palate at birth. I pray that someday Whitney will be able to eat pizza and chicken nuggets with her brothers. Hopefully this test will show either no problem at all or will guide the doctors to fix whatever the problem may be.

On another note, I am frustrated beyond words with the "system." Before having a child with disabilities I had no idea how expensive things were for these families. Therapy, doctor visits, prescriptions, adaptive equipment, surgeries, mobility devices, etc. are so costly. To top it off, our precious U.S. government and state services are impossible to deal with. We do not qualify for many programs due to income levels (though we don't make much for a family of six). We have been put on waiting lists for programs that offer help to children with disabilities. Some of these programs may take years for our name to come up, and others we may never see. Luckily we are able to utilize ECI (Early Childhood Intervention) services for Whit's therapy sessions, but that will end when she is 3 years old as their program only covers children up to that age. I have been around and around with each entity trying to find help with paying for equipment and medical bills only to be turned down (medicaid, social security, children with special health care needs, etc.) If anyone knows any tricks or has any advice, please pass it along! Whitney desperately needs a wheelchair/stroller and it doesn't look like our insurance is going to be very helpful. These devices typcially cost around $3,000-$4,000. I have looked for used chairs and equipment too, but it is difficult to find pediatric equipment that is in good condition or that fits little tiny girls. It saddens me that this is a problem for so many families with handicapped children.

In the meantime, here is a video taken today of Whit and the many new tricks she's learned recently.

Whitney's Christmas

Whitney had a great Christmas. We had Gigi at our house for most of the holiday and spent time with the King side of the family. Whitney enjoyed watching me open her presents on Christmas morning. We tried to get her to do it, but she wasn't so sure. She got some really fun new toys and a dollhouse. Whitney has begun dancing to music. She loves her little piano/keyboard and, as you can see in the videos, she really gets down to the music!

We also traveled to San Antonio with Gigi for a few days just for fun. Whitney enjoyed strolling along the river. We are excited because Whit will be getting her first wheels! She doesn't do well in a regular stroller because her trunk control is not very good. So, in order for us to tote her around in a posture that is both comfortable and good for her we will be ordering a pediatric wheelchair. It is called a wheelchair, but it actually looks very much like a typical stroller frame with a special seat that supports her torso, neck, back and head. I think she will be much better off. I tend to stick her in the stroller quite a bit when I'm running errands or taking the kids to soccer, etc. So, this way I won't feel bad about leaving her in it to watch games or shop. It will probably take a few months to get the new wheels due to insurance and doctor orders, etc. It is very expensive, but so worth it in the long run.

We are still working on crawling. As you can see in one of the videos, she will put herself in the crawling position, but can't figure out how to keep her mid-section stable enough to make a move. She rocks back and forth in the position. She is still not talking, but she is beginning to follow simple commands like "push the button" or "raise your hand." I will try to get a video of that soon. We are so proud of her. She seems to understand a lot more than we give her credit for! I have begun showing her videos of sign language in hopes that she will absorb the signs and use them. She doesn't pay attention to me when I try to teach them (much like her brothers), so maybe this will be more on her level. We'll see.

Something interesting happened to me recently. For the first time I was asked by someone what was wrong with Whitney who had not previously known about her. I asked how they'd heard about her and they replied they hadn't, but that they could tell by looking at her that something was wrong. That was hard. By no means was I angered by the question, but it's just hard to finally realize that others see her differently. I sincerely appreciated his questioning it though because I want people to ask and not be afraid. I want people to understand that she is exactly like every other child in so many ways. I never want anyone to assume that she's untouchable or be afraid to talk to her. She is so "normal" to us that I often forget that she's anything else. It is hard sometimes too to see kids her age acting age-appropriately...running around, talking, sassing their moms! However, I've had that experience THREE times before, so in actuality it's almost a blessing! Whitney acts more like a 6-7 month old baby, and in my heart she will forever be my baby.

Things have changed in my way of thinking since Whitney came along. I used to dream about "one day" when I would be able to leave the house without kids or a stroller, buckling car seats, walking so slowly to hold a hand, etc. I always looked forward to that day when I could go workout or stop at the grocery store whenever I needed to without all the excess baggage. Lately, I've gotten past that. It saddens me to not know whether Whitney will be able to walk on her own without assistance or stay at home alone someday, but I do not feel sorry for myself at all....I feel blessed. As much as I hate all that she has to endure and all that she will have to put up with in her life, I feel so content knowing that she will most likely always live with us at home and that I will have her company every day of my life.

With the new year beginning I think of how grateful I am. Not only for three healthy, precious boys that I love more than life itself, but for this extra-special little angel who smiles at me when I don't deserve it. I am thankful for all that I have.

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.