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

A Sad Update

Well, Whitney still doesn't have her helmet. I called last Tuesday and they said it could be another week or two. It's been over three weeks total and I was told it would only take 2 weeks to get here. Why am I so anxious to get it? Because they say the longer you wait to start the therapy, the longer it will take to work and the more likely it becomes for it to NOT work. The ideal time to start is at 6 months and Whit will be 8 months next week.

Additionally, she has been having "episodes" for about three weeks now that I brushed off as possible reflux. She arches her back and smacks her lips while her arms go out to the sides and sometimes her eyes roll back and her hands shake. Her PT seemed to think maybe she was just having digestive problems. However, the episodes kept getting closer together and happening more often to the point that they are now happening every 10-20 seconds for an hour or more at a time up to 20 spans of time each day. So, I took her to see her Pediatrician this morning and he witnessed her doing this. He thinks she is having seizures. So, we are off for another EEG tomorrow morning. Her Neurologist's nurse called shortly after her appt. this morning from Cook's and said after she talks with the doctor she will call me back to see what to do from here. Most likely we will see the Neurologist as soon as he receives the report from the EEG. So, I'm upset because after her last MRI report, I assumed she was just fine neurologically. I will update with more when we find out.

Finally, Whit's PT has begun the ordering process for her stander and she will also be ordering a special chair that looks a bit like a wheelchair, but with a tray. She will be able to use this to eat as well as to sit and play. She still is not sitting up on her own and has a big problem with her posture, so we are hoping this will help. The downside is that it will take around 3 to 4 months to get the two devices because of all the "red tape" that we and her doctors must go through to get insurance to help with the cost. These are both REALLY expensive pieces of equipment, so I guess the wait is worth it. I'm beginning to understand now what people with special needs children are talking about when they complain about the "system."

Sorry I don't have any new photos to post today. Hopefully I will have some with an update shortly. Thanks for keeping Whitney in your prayers. I know I've said it before, but she is honestly the sweetest, most loving, calmest baby on Earth and for those of you who've not met her yet, you would fall in love with her in an instant! She truly deserves the absolute BEST life has to offer her.

http://www.youtube.com/watch?v=84FHZhB5__Y

Helmets and Standers

Whitney was fitted for a helmet about two weeks ago. They took a mold/cast of her head to determine what points the helmet needs to focus on. She will wear it 23 hours a day for about 4-6 months. The helmet will help mold her head into a more rounded shape. She has become flat-headed on the back as a result of not being able to sit up or do much on her tummy yet. She spends a lot of time on her back playing and sleeping, so her head has flattened in the back. The helmet should be in soon and she will begin wearing it immediately. We chose a pink colored helmet, but I'm hoping to find someone who will paint it with some flowers and her name!



She will also be getting a device that will help support her in a standing position. It's almost time for her to start standing and beginning to pull up, so her PT is hoping this will help. This is what it will look like: