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? :)

Good News!

We are back from the Epilepsy Center at Cook Children's and have some great news to report! They were not able to detect any seizure activity on her 24 hour EEG!

There was a video camera in her room that followed her around and recorded each "event" that we were seeing. The nurses were able to see the episodes that she was having as well as record what was going on with her heart and brain waves while they were happening. Although everyone who witnessed her doing this seemed to think it was seizures, the EEG showed that they were not seizures! The doctor told us to talk to our Pediatrician again and start looking for other answers. We are going to try a reflux medication first and see what happens.

We are just so relieved that she is not having seizures. Our little girl is a trooper! She wasn't exactly thrilled about having all the messy, smelly glue in her hair with all those electrodes, but she didn't fuss much after they were connected and did well throughout the testing. Thanks for keeping little Whit in your prayers! She is once again our little miracle baby.

http://www.infantrefluxdisease.com/sandifers-syndrome.php

Seizure Update

Whitney's Neurologist wants to do a 24 hour evaluation at the Epilepsy Center at Cook's on Tuesday. So, we will be headed up to Ft. Worth next week for that. We will be able to stay with her in the hospital room. I will update when I know more.
http://www.cookchildrens.org/neurosciences/services/Pages/emu.aspx