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:

A Christmas Miracle!

(I can't figure out why Whit is cut off in the photo...I've uploaded 3 times and it looks fine)

We got our Christmas gift a little early this year. And, it was the BEST Christmas present anyone could ever hope for!!!

Whit had an appointment on Monday with her Neurologist. We were supposed to be told what was found on her MRI that was done the day she had her eye and ear surgery. I took her by myself because Jason had to work a double shift in Abilene. I was not looking forward to it because I sort of expected to be told that the cerebellum problem was no better and was just praying that nothing "new" was found on the scan.

The doctor came in and sat down on his chair looking at me. He asked how Whit was doing and I told him she was doing great, surpassing all our expectations, etc. He took a deep breath and began telling me that the MRI that was done on December 9th showed absolutely no evidence that ANYTHING was wrong with her cerebellum!!!!! He also said that a cyst she had at birth was no longer there and that there was NOTHING structurally wrong with her brain whatsoever!!!! I was in shock.

We had been told after the first MRI that the two parts of her cerebellum were not connected/communicating and that they never would. So, you can imagine how shocked her doctor obviously was....as were we! He just kept repeating to me, "Do you understand, there is nothing wrong with her brain?" I just started crying and smiling and kissing Whitney. I couldn't even believe it. It was very obvious that he couldn't believe it either. I don't think he ever gets to tell many people that their child's brain is perfectly NORMAL!!!

I am just so shocked still. I still can't believe it. I keep wanting to call the office and just ask the nurse to tell me one more time so I can hear it again! We are so thankful and feel so blessed. This was defnitely a case of Divine Intervention! There's no doubt.

Whitney had a great Christmas, as did her brothers and parents. We celebrated with my sister and her family in Flower Mound. Whitney got lots of toys and new bows and a beautiful bracelet! As you can see from her photos, her eyes are looking great and seem to be straight at this point. She's such a doll.

Surgery is finished!

Whitney is back home and is doing well.

She went in Monday for her pre-op appointments and we were pretty nervous at that point. They explained what would happen and how the procedures were performed which was scary. My main concern was the anesthesia. I was so worried about her getting too much or not enough and made myself sick worrying. However, I am so glad that we were at Cook's. They really know what they're doing with babies. All of the doctors were really nice and her Opthalmologist even brought her some gifts! He says that she looks like his granddaughter, so he is always talking about her.

The morning of surgery, we left my mom's house near Plano at about 5am and arrived at Cook's at 6am for surgery. Needless to say, I didn't sleep much the night before and was exhausted. Whitney did great. She didn't fuss or complain about not being able to eat. She was happy and pleasant. However, she did not like the drops they put in her eyes before surgery, but they gave her a special vanilla-flavored paci that made it all better! Jason, Gigi and I were able to stay with her until they took her back to the operating room. They did not stick any needles in her until she was asleep from breathing the gas in the OR. It was so hard to say goodbye and watch them take her away. I tried my best not to cry, but that didn't last long!

We were escorted to a waiting room with all the other parents of children having surgery that day. In a short amount of time, the room was full and it was a large room. We couldn't believe how many kids have surgery there every day. The waiting room was nice and had a glass ceiling where we could see the birds flying by. Jason could tell I was a nervous wreck and kept trying to comfort me. We waited for news. Whit's ENT doc visited us shortly after we arrived and told us that the tubes were in place in her ears and that he removed a great amount of fluid from both ears.

We got a phone call in the waiting room from a nurse saying that she was asleep and comfortable and they were starting the eye procedure. We waited for quite some time before her Opthalmologist came to tell us that he had finished and her eyes looked great. We were relieved that the surgery part was over, but knew she would still be a while because they were going to do her MRI while she was still asleep. This took a while. It was 10:30am when they finally called us back to the recovery room.

When we walked into the recovery room, they were wrapping her in a blanket and arranging her IV line. She was dressed in a cute little hospital gown ( we asked if we could keep it, but they said no!) She was just waking up and having a hard time opening her eyes. I could tell that her throat was sore from the tube because she was swallowing really weird. They told us to give her some Pedialyte in her bottle and she took the whole 2 ounces! So, we asked for another and she took about an ounce more. She was doing great. We tried to give her some Tylenol, but she was gagging on it and we decided to wait.

The Anesthesiologist came in after about an hour and asked a few questions, then told us we could take her home when we were ready. The nurse came in and took her IV out and we dressed her in her own clothes, then headed back to Gigi's house. The whole thing was uneventful and we are so happy that she did so well. She is doing great now with just some redness in her eyes and a bit of swelling. Her ears seem to be doing great too. We are using drops in both ears and eyes for the next week. We are so glad this is over. I can finally stop worrying.....for now!

Here are some BEFORE pics and a few AFTER:

Finally downloaded some photos!

Whitney is now 6 months old. I finally downloaded some recent pics we've taken. She had her first food this weekend. It was an okay experience. The poor baby can't swallow solids very well and the cereal just came right back through her nose. I hate cleft palates! I'll be so glad when she gets it fixed. Enjoy the pics!