Friday, June 29, 2007

Two Surgeries!

Well, we got the bad news today at the doctor's office. Alivia has to have two surgeries over the next few months. The first, to remover her tonsils and adenoids, will be done in August. The second, the elongate her jaw, will be done in early October. Hopefully everything will heal quickly and they'll be able to remove the jaw device by Christmas.

I'm dreading both procedures. The first will be hard just seeing her dwarfed by all the medical gadgets and such, and I know she'll be in pain. The second will be even worse and then I get to add to it with the daily screw turnings for a couple weeks. Thank God we only have to move her jaw about 12-15 mm and it will only require about two weeks of adjustments.

I have some photos to post, but I'm going to hold off on them until later this weekend. Gotta get my mind in a happier place. Anyway, just wanted to post the update since I know a lot of folks have been wondering.

~ Jeana

Thursday, June 21, 2007

The Day After

Man, was yesterday stressful! Alivia, Gran and I arrived at Nemours Children's Hospital for her CT scan only to be informed that we needed to go to Wolfson's Children's Hospital instead. Fortunately the two are only a couple blocks apart and are connected by a cross-interstate elevated walkway. It was much quicker to walk there than to try to move the car. We arrived pretty much on time and sat down to await our 10 a.m. appointment. At 10 they took us all back to start prepping Alivia and we hit another speed bump. The CT scan was ordered because of Alivia's small throat and jaw which meant she was high risk for airway issues which also meant they couldn't do the mild sedation they had intended and would need to do full anesthesia on her. Of course that meant they needed to find an anesthesiologist and none were available until possibly in the afternoon. So...

We left the hospital at 10:30 with orders to return at noon for a *possible* 1 p.m. procedure time. Livi, of course, still had to be kept NPO (no food or drink), poor thing, but handled it like a trooper. At 11:30 the hospital called us and told us that the earliest they could do the procedure would be 2:30 and that we needed to be back by 1:30. Gran and I decided to take Alivia home (we had gone to Toys R Us to pass the time) and let her get a short nap.

When we arrived back at the hospital we had to wait an hour before they were ready for Alivia, but, thankfully, they were able to find an anesthesiologist. She decided to try to do the procedure without putting her under, but Livi had had enough of cooperating and decided to get fussy, so they ended up knocking her out for the 5 minute procedure. Then, when Livi woke up, she REALLY decided she'd had enough and became rather intractable. By this time it was 4 in the afternoon and she was absolutely starving. My usually very quiet and sweet natured child threw a tantrum of major proportions to get some food and devoured a whole banana, a popsicle, a carton of milk, some apple juice and a handful of cheerios. The nurses were in a dither predicting that she would get sick, but she proved them all wrong.

The rest of the evening Livi remained very demanding and clingy, but this morning she was back to her normal self. Unfortunately we were not able to see the doctor yeterday so now we have to wait for an appointment to get the results and find out whether we will need to do the surgery. We have a tentative appointment for next Friday, but I'm hoping his assistant can squeeze us in sooner.

~ Jeana

Monday, June 18, 2007

Summertime Fun

So far, medical issues not withstanding, Livi and I are having a terrific summer. We spent a lovely 5 days in Toronto, Ontario, Canada earlier this month. I'll try to post some pictures later. Next month we head to St. Louis for the Children's Hope International Family Picnic and then we'll end the summer with a cruise to the Bahamas. We've also been exploring the zoo and several of the many parks in our city. Livi loves swings and slides, so I'm always on the lookout for new places for us to play. Fun! Fun! Fun!

The trip to Toronto gave me my first taste of traveling as a single parent. Livi was an absolute delight! She was incredibly well-behaved and traveled like a pro! The only hassle we had was at the US-Canada border. I was asked to provide a letter from her father saying that I had permission to take her across the border. This happened in BOTH directions! Of course, there is no such letter because there is no father. And, of course, I also didn't have copies of the adoption papers or her birth certificate with me. I had her passport and didn't think I'd need those other documents. Fortunately I was able to argue our way past the passport agents and we were able to go on our merry way. It was a bit touchy, though, and I'll be sure to carry copies of those docs on our future trips.

Wednesday is Livi's CT scan appointment and we should be able to find out that same day if we will have to do the surgery or not. We're also now working on trying to get a diagnosis of "sensory integration disorder." Livi has no pain response to most things and exhibits all the other classic symptoms of hyposensitivity in most areas. It's another of those "no cure" situations, but there are treatments that can allow her to overcome the problems. Getting the diagnosis will be our first step to getting her the treatments she needs.

Livi is also back with my mom now for daycare. She did really well at the professional day care, but with all her medical and developmental issues she really needs the one on one care she can get from my mom. It means a lot more driving for me and a lot less sleep, but it's worth it to make sure she is in the best situation for her needs. I think it also is good for my mother--she missed seeing Livi every day these last two months.

I'll update again with photos as soon as I can--and with the results of our doctor appointments on Wednesday.