Friday, November 4, 2011

It's Been A While

Aurelia continues to grow and thrive and is doing fantastically well, but I am getting ahead of myself. Our last update was in July, just after her heart surgery. She recovered well and we were home a week after the surgery, though there were a few difficulites along the way. She is a quick healer though. We were not supposed to give her belly time for a full two weeks after her surgery, but that didn't stop her from giving herself belly time. Prior to the surgery, she had been working on crawling (a very slow form of it that includes lots of rolling), and she wasn't willing to let a little thing like open heart surgery get in the way of her practice! The doctors told us that she would self-regulate and if it hurt her to be on her belly, she wouldn't do it. Well, either she's one tough cookie - or it really didn't hurt. She spent as much time as possible on her belly!

We were relieved that we did not have to turn the distractors in her jaw any more. That finished just prior to her heart surgery. Now the plan was to wait and allow her jawbone to heal. We returned to CHOP in late August for a follow-up sleep study and I was happy that we were able to go home the next day (quite different than the previous one that ended with a 2-week stay in the hospital!). We later got the results of the sleep study that still showed mild-moderate sleep apnea, but it was GREATLY improved. Which means that the mandibular distractors worked and that the pain and frustration of moving her jaw was worth it. There was a chance that she would have gone through all of that and it wouldn't have worked. We were ecstatic to hear that the procedure was a success! Aurelia was scheduled to get the distractors taken out in September, just 2 days before her first birthday.

While we waited for that surgery date, she continued with her weekly therapies. She has a Physical Therapist (Miss Marjorie) and a Developmental Therapist (Miss Lynne), who she was been working with since February. In July, we added Occupational Therapy (with Miss Judi), which she also gets weekly. She makes improvements daily. In July, while she was in the hospital, she began sitting up, unassisted. And now, just a couple of months later, she is army crawling and is able to get anywhere that she wants to go. Over the last week or so, she began to get herself into a sitting position from a laying position, all by herself! Aurelia really is one determined little girl, which is wonderful to see such fierce strength and will. Madison is truly her biggest cheerleader ~ she jumps and shouts out "you did it Aurelia! I'm so proud of you!" each time that Aurelia sits up!

Another addition to Aurelia's daily routine has been the introduction to FOOD. Yes, actual baby food! In August, she had an appointment with the feeding team and while they are cautious, they are allowing us to give Aurelia an ounce of stage-2 baby food one time a day. The fear is that she is a risk for aspiration, so we have to be very careful. Also, because her core isn't that strong yet, she tires out very quickly. An ounce of food isn't a whole lot, but it is about all that she can handle at this point in time. The introduction of food has been a slow one. Aurelia had been grabbing at our plates/forks/anything left close by for months. And she brings everything to her mouth, but as we discovered when we first gave her baby food, she didn't quite know what to do with the food when she got it into her mouth. Like any baby getting their first tastes, she spit most of it out. She is extremely enthusiastic though and grabs the spoon from us with almost every bite. From the first time that I gave her some applesauce, she has tried to feed herself. And I'm happy to say that now, nearly 3 1/2 months later, most of the food actually gets swallowed. AND, she's been enjoying little star puffs, so she is slowly getting the idea of how food and her mouth are supposed to work. We will reevaluate all of this once she gets her cleft palate repaired. We will likely have to start all over because she'll have a whole new mouth, which will work a bit differently. In the meantime, we soldier on with trying different tastes and different textures. In fact, we just added a FOURTH weekly therapy. She will now be seeing Miss Cindy, a Speech Therapist, on a weekly basis too. It is great to have so many services available to us! In PA, she gets all of these therapies at our house (until age 3), which is so covenient. I try to be home for all of them, but it is great that she can still have therapy at home when I can't be there (it is good for our new nanny, Kaitlyn, to see what goes on in the therapies too).

On to the surgeries... As I mentioned above, Aurelia was supposed to get the distractors out on September 21st. But, our little girl caught a cold and it was decided to postpone the surgery. No need to put any additional risks on the surgery. We had a to wait a full month, but on October 24th, the distractors FINALLY came out! Aurelia healed quickly and we were only in the hospital for one night. What a miracle worker she is!

And now we are anticipating her FINAL surgery, cleft palate repair, for next week, November 9th. This will be surgery #12 and we are so excited that it will soon be over. Again, it should be a one night hospital stay. Some kids stay longer, but since Aurelia is primarilly tube-fed, we don't have to worry about getting her back on an eating schedule. I'm sure that her mouth will be sore. In fact, one of our therapists noticed this week that Aurelia's tongue seems to be tied, so there may be an additional part to her surgery. I called her plastic surgeon, a really great guy named Dr. Jesse Taylor, and he'll take a look at her when we come in for the surgery and decide whether or not he can do that repair at that time too. I still can't believe that none of us noticed her tongue before because it is now so obvious to me. Either way, we are very hopeful that once her cleft is repaired, we'll be able to increase her oral feedings.

I hope to write more next week and try to keep this blog a bit more active with entries. I will also add some photos later, but I really wanted to get you caught up on what has been happening since July. As I said, our girl is growing and thriving and doing really well. We are so proud of the work that she is doing and with how far she has come.