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.

Surgery Date Set

Whitney's surgery date has been set for her cleft repair. It is scheduled for April 15th. She will be staying overnight at Cook's and possible an additional night if she needs it. They will repair the cleft by closing it in three layers... skin, muscle, skin. We will be feeding her with a syringe for three weeks afterward and she will have her arms bound so that she does not stick her hands in her mouth. This will be hard because she is a major thumb-sucker! We have been told about a special feeding device that can be used with cleft repairs. It is supposed to be easier to use than a typical syringe. It is called the Zip-n-Squeeze. I have ordered some of these online and hope to start using them soon so that she will be accustomed to them before the surgery. I am ready for the surgery because my poor baby can't even eat baby food still. Everytime she tries, it comes straight out her nose and I know it's not pleasant for her.

Her RSV is hopefully getting better. We took her back to the ER here in Abilene on Friday night because she was struggling so much to breathe and still running fever. I was afraid she was developing another infection and was hoping it wasn't pneumonia. They gave her a stronger breathing treatment med and she sounded better enough to go home. We are still doing breathing treatments and she is still not eating well, but she is very slowly improving each day. I will be so glad when this is over!

RSV

We are back home tonight after spending three days in Ft. Worth at Cook Children's. We went down to FW on Sunday because it was my sister's birthday and also because Whitney had an appointment with her plastic surgeon about scheduling her cleft palate surgery on Monday. So, we decided to stay Sunday night with my sister and brother-in-law and took all the kiddos with us.

After Whitney's appointment at 2pm we decided to do a little shopping and then went to eat at a restaurant (Joe T. Garcia's) in downtown FW before heading back to Abilene. While we were at the restaurant Whitney started coughing and sniffling. By the time we got in the car, she was struggling so much that we assumed she was having some sort of allergic reaction because it came on so suddenly and she was gagging and struggling to breathe. So, since we were in the area and scared to get back on the highway for two to three hours with her doing this, we drove back to Cook's ER. I walked in with Whit while Jason and the boys found a parking place. When we checked in at triage, they immediately took Whit back even with a whole waiting room filled with other kids. They could tell she was having a hard time breathing and after hearing about all her other health issues, I guess they decided she didn't need to wait her turn! Thankfully, they took her into a procedure room and immediately there were about 10 nurses and doctors in the room suctioning her and undressing her and whatever else they do! It all went so fast. They took a sample of her mucous to test for RSV and within a few minutes they were able to tell me that she was RSV positive. This all happened before Jason and the boys even got to the ER!

To make a long story short (er), they decided that she should be evaluated overnight since she had such a hard time breathing and because her other issues and cleft palate specifically were causing the RSV symptoms to be worse. They put her on some breathing treatments and watched her overnight. The next day the doctor told us that he wanted to keep her another night because he didn't want to send us home when she was still needing "professional suctioning." So, we were released today at about 1pm and drove back to Abilene. Oh, by the way, the boys stayed with my mom in Dallas Monday night and Tuesday, then Jason drove them to Eastland to meet up with his parents Tuesday night so Hunter and Chase could get back to school. Bless their hearts, they are exhausted from all the back and forth! And to top it off, Ryder is sick with apparently the same thing, but not having as much trouble as Whit. He started with a stomach thing last week and now it's the respiratory crud.

I will be taking Whit and Ryder to see their Pediatrician in the morning here in Abilene. I'm afraid that Whit may be getting worse. She has now developed a fever and is struggling again. They sent us home with no meds and no breathing treatments! However, I luckily had some Xopenex left over from one of the boys' previous illnesses and we own a nebulizer (although I think it's on its last limb). So, we were able to give her a breathing treatment at home tonight which helped some, but she's still having a hard time. I'll keep you posted on how she and Ryder are doing. Thanks for keeping up with us.

Helmet Schmelmet!

Well, Whitney got her helmet on Thursday and she doesn't seem to mind it at all! She has been wearing it with no problems. She can take it off for one hour each day for a bath and to clean it. As you can see, we added some decorations to it! I took it to Sign Pro and they fancied it up for us. I guess if I get tired of the flowers I can take it back and have them do something else.....zebra print? :)