More surgeries .......

We've been so busy this summer!  Mostly trying to stay cool.  I think we're all ready for fall around here.  Luke starts preschool right after Labor Day and I think he's going to love it!!!

This coming Monday, Jacinda is having an endoscopy and colonoscopy.  Because of her age, she will need general anesthesia.  The doctor says it should only take about an hour.  She's having it done because she continues to have horrible diarrhea.  All her tests so far have been normal.  Her doc is sure these tests will also be normal.  I sure hope so, but the diarrhea is truly awful.  Everywhere we go, we carry 2 changes of clothes and she often needs it.  So we'll see what happens.

In even bigger news, we're waiting on a phone call with the surgery date for her tongue, nose, and palate.  Back in May, her surgeon, Dr. Inciong, said that he wanted to wait at least 6 months, maybe a year, and then do some more work on her nose.  Her left nostril is tiny and he had opened it up a bit in February, but it had collapsed again.  So he said we should wait a while until she gets bigger and then re-evaluate.

A few months ago, she started having nosebleeds on that side.  They aren't too bad, but just enough to make a mess.  So last week, I called and made an appointment to see Dr. Inciong.

Around the same time last week, I was practicing words with her.  I realized that she wasn't lifting her tongue up to make certain sounds, like "l" and "t".  For a while now, I've been frustrated that she hasn't been making much progress with her speech.  We and her speech therapist have been chalking it up to being 2 and being very stubborn.  But I started wondering if she was "tongue-tied."  None of her doctors or speech therapists had ever mentioned that this was a possibility.

So I asked Dr. Inciong today to take a look, since we were there anyway.  He said she is definitely "tongue-tied".  It's where the little piece of tissue under the tongue is too small and doesn't allow you to lift your tongue up or stick your tongue out.  For some people, it's not severe and they are able to compensate.  For Jacinda, it's definitely interfering with her speech, so Dr. Inciong says we should take care of it immediately.  Unfortunately, because of her age, we're looking at general anesthesia again.

He said that while he's in there, he'll take a look at her nose and very possibly go ahead and try to make that left nostril larger again.  He thinks the insides of her nostril are touching and "sticking" together and that's what's causing the nosebleeds.  He also will take a look at her palate and make sure there are no holes in it.

Hopefully this surgery will be soon!  I'm expecting the nurse to call either tomorrow or early next week.

Jacinda's Follow-Up Appointment

We saw Jacinda's surgeon today. He was VERY impressed with how well her palate is healing after only 2 weeks. He saw NO signs of a fistula (which, as I understand it, is a place where the palate opens back up). He wants to see her back in 6 weeks and then he wants the entire craniofacial team to see her in 6 months. At that point, we'll evaluate how she's doing and see where to go from there. At this point, he thinks she will not need another surgery for several years!!!!!! Although, he did say that he wants to keep an eye on how her nose heals and if the left nostril collapses back down, he might want to try to fix that.

The best news he gave us was that we can start giving her crunchy foods to eat again! He told us to not go crazy .... give her things slowly and see how it goes. He also said we can start introducing a straw in another week.

Her speech therapist thinks that once we can teach her to use a straw, her speech will greatly improve. She learns new words every week. The words we can understand are: mama, moon, uh-oh, and night-night. She also is using a lot of signs: eat, drink, potty, help, hurt, kitty, and more.

So things are going really well!!!!!!

Liquid/Soft Food Diet

So Jacinda is on a liquid/soft food diet for 2-3 weeks. This girl is miserable. She eats more than we do!!! Here's what I've come up with that she can eat.

Yogurt
Jello
Pudding
Smoothies - yogurt, milk, fruit - I may even try to sneak in some wheat germ for some extra protein and other good stuff.
Mashed Potatoes
Baby Food
Carnation Instant Breakfast
Ice Cream
Applesauce - plain and with cinnamon
Pureed veggies
Noodles (probably in another few days)

I'm trying to give her things that are healthy, but that she'll actually enjoy. If you have any ideas, let me know!

We're HOME!!!!!

We are home and doing well so far ......

Wednesday - We arrived at the hospital at 10 am and surgery was scheduled to start at noon. We got checked in and they actually got started a little early. I (Sherry) had a hard time when we left her. She was crying and reached out for me when I handed her to the nurse. They promised us they'd have her to sleep in under a minute. Later, the nurse that took her from me told me that Jacinda had stopped crying as soon as we walked away. And that she went to sleep just fine. They placed the IV AFTER she was asleep!!!! I was so thankful for that because her last blood draw did not go well. She had several needle marks on her hands and feet, so it looked like they had tried a few different spots. They finally got it in her ankle.

We settled into the waiting room and the surgery was supposed to take around 3 hours. The nurse that took her from us called us each hour with an update. The surgery took just under 3 hours. We went back to the recovery area and she was already awake. Apparently, as soon as she woke up, she decided she was too hot and peeled off her shirt and tossed it on the ground!!! That's our girl!!!!!

She had a hard time waking up and was in a lot of pain. We gave her some juice ..... and some morphine!!!! She went back to sleep and we went up to her room. She ended up sleeping most of the afternoon. She'd wake up and be really upset, so she got alternating doses of Tylenol w/ Codeine and Morphine until just after midnight. She slept great last night and didn't need any meds after that midnight dose!

Thursday - I stayed the night in the room with Jacinda. The bed was pretty comfy, but I didn't sleep that great because of all the noise .... voices in the hall, beeping in everyone's rooms, the noises of Jacinda's monitors. We both woke up around 7:30 this morning. She had some clear liquid breakfast! She is NOT happy with the clear liquid situation, let me tell you!!!!!!

After breakfast, she took a little nap. Once Aaron came back, we put Jacinda in a wagon and we took a walk around the halls. Eventually, we stopped at the playroom. She perked right up and played with some blocks, then went over to the play kitchen and made us some lunch!!!!

Finally, the surgeon came to see her around 12:30. During surgery, he had put a gauze packing in the roof of her mouth. He took that out and she was NOT happy about that!!!! He told us we could go home!!!!!

We waited around a little while so she could get one more dose of pain meds. She was pretty unhappy during that time because of the packing removal and being tired. We made it home and she's napping now.

She has to be on a liquid and soft food diet for 2-3 weeks. Oh.My.Goodness. She is going to HATE us!!!!!! The hardest part will be trying not to eat in front of her!