Surgery Date Set

I apologize for taking so long to update. There hasn't been much to update about until now.

Whitney is set to have surgery to place tubes in her ears and check the rest of her sinus/ear functions. She had tubes placed in her ears at 9 months of age, but they fell out about 10 months later. Since then, she has dealt with many ear infections and upper respiratory problems that always seem to become severe. This season alone she's had 4 ear infections and 3 rounds of upper respiratory gunk. Each comes with high fevers and weeks of antibiotics, sometimes requiring two rounds before we can kick it. We ended up in the ER a couple of weeks ago when we couldn't figure out why she was tremoring. It ended up being her ears and the left one almost burst. Thankfully we were able to treat the pain and infection before that happened. So, for those reasons, we were sent to an ENT in Ft. Worth yesterday (her original ENT doc retired last year). This doctor was very concerned about her hearing and this affecting her ability to learn to speak. So, he has ordered tubes again. This time they will be placing a different style of tube that are made of a more durable material, have flanges on them (t-shaped) to secure them, and will last much longer than the regular type. There is a larger chance of having problems resulting from these tubes like perforation or scarring, but the doctor reassured us that this is the best route for Whit right now. He warned that she will most likely need tubes in her ears for a very long time and these have a better chance of staying put for a while. While he is in there he will be draining the large amount of fluid behind both ear drums and checking to make sure everything lines up like it should, especially in relation to her sinuses and cleft repair.

The surgery is scheduled for next Tuesday at Cook Children's in Ft. Worth. Whit has had all of her surgeries at Cook and we feel very comfortable there. We will be speaking with the Anesthesiologist on Monday to decide what route to take with her medications and blood pressure regulation. There is always a higher risk with operating on kids that have hypertension, so I am anxious to see what they say. It's possible that we may have to stay overnight if anything arises. BUT! We are hoping for a smooth, easy surgery and recovery. Most likely we will be able to come back home the same day.

Whitney has been doing well with all of her therapies and is now functioning at about a 12-month-old physical capacity. She is getting closer to walking, but still isn't quite steady enough to take off on her own. She is getting around great with her gait trainer/walker though. And she loves to walk. We try to allow her to use her walker as often as possible.

She is still not eating age-appropriate foods, but we have graduated to blended/pureed table foods! She no longer relies on jarred baby foods. She is able to eat just about anything we eat as long as we blend it well to a smooth texture for her first. She is also finally able to eat Cheerios! She still does not use her teeth or tongue, so there's not much chewing or maneuvering going on, but she can eat them by allowing them to get soggy enough that they dissolve. This is a huge step for her. She has the ability to pick up foods and place them in her mouth, but she is still unable to swallow them if they are not mashed up first. We are still working through the gagging thing too. She gags a lot and I've come to my own conclusion that her cleft repair, although perfectly pieced together, is just taking away the sensations she needs to feel foods touching her soft palate. She does not have a uvula, so I really believe that her gag reflex is what keeps her from swallowing foods that are too big to digest.

We are also still working hard with trying to get Whitney to talk. She is still stuck with only "Mama" and "Nana" (meaning dada!). However, she is fluent in baby signs and still understands EVERYTHING we say to her! She is a very smart little girl and can follow a story, follow directions, and she lets us know exactly what she wants. She also has a very sharp memory. She can be told something once and remember it exactly the next time it's presented to her. In fact her memory is so good I tease that she's my little elephant!

I will try to update as soon as possible after Whit's surgery on Tuesday.