More Big Changes

I failed to mention in my last post that we stopped giving Abby her formula about 3 weeks ago. Getting her to sit down calmly in her chair for the entire bolus (tube feeding) was just becoming too much of a fight, so we experimented to see what would happen we just stopped them all together (She was getting 3 boluses each day, in between her meals). We were pleasantly surprised to find that without the formula, she ate considerably more by mouth. And a couple days later I happily disassembled her feeding pump and pole and threw them (gently) into the back of her closet, never to be seen again. What an accomplishment! She still has to have water given through the feeding tube because she won't drink it. But at least she is eating all of her calories by mouth. Amazing!! Although she is still on a restricted diet, we are making progress there as well. Just last week we started to introduce crunchy/crumbly things. We have been working on goldfish and graham crackers. So far so good! I think she would eat an entire bag of goldfish in one sitting if I let her. She really likes them. She has always loved her fishies though. We even took some to Sea World with us the day before she was rushed to the hospital. I love that I have a picture it!

Abby's teacher at school keeps telling me every day that Abby is not interested in the snacks I pack for her. Instead she tries to steal her classmate's fruit loops. Ha ha! Sorry Abbs. We aren't quite there yet. Soon though. Soon you can have those fruit loops too!

I've been waiting for the day when we could get rid of the feeding pump for a loooong time. Having formula pumped into your stomach is so unnatural and has to be very confusing for her. I am very excited that we are done with that!! Now we just have to get her drinking so that we can get rid of the feeding tube all together. I'm not sure why she won't drink, but I have a feeling it is because of the texture. Her liquids still have to be thickened, and the thickening gel makes the liquid kind of slimy. I drank some of it one time and it was like drinking jello that had been sitting out too long - ick. So I don't really blame her. But liquids are tricky, and dangerous, so she needs a lot more practice with the thick stuff before she will be ready for regular drinks.

Abby now receives her therapy at a new clinic. Last week I got a call from one of her therapists saying that the owners of their clinic were forced to shut it's doors. We were very sad at the thought of losing these amazing people. They are more than just Abby's rehabilitation therapists. They have become my friends and are each concerned about what is best for Abby. And now they were all out of a job. But just two days later I found out that they had all accepted positions at a new clinic. I was so excited! This company was very small and looking to expand, so they hired most of the therapists from Abby's clinic. It is a nicer facility and I think Abby will like the change in scenery. When I took her down there this week for the first time, she quickly set off exploring as soon as she was out of her chair.

Abby had an appointment with her neurologist last week and he said that we can begin to wean her off her medications. Yay!! She only has two, but it will take several weeks to taper off. They are pretty strong medications and her little body has been used to having them in her system for over a year. One is to protect against seizures and the other is to control tremors. I can't wait until she is medicine free!! That will be very nice. He gave a pretty bleak outlook in terms of further recovery though. He very accurately guessed that her progress had slowed significantly. I finally got him to admit that out of all of his other patients who had lost their speech, Abby has gone the longest without regaining it. You should have heard him dance around it. For a while I thought he just wouldn't answer and I was going to have to ask again, but finally, after we had moved on to something else, he came back to it. He was also quick to say that he never says never, whether it be good or bad. But after being in the room only a few minutes with us he announced that she was definitely going to have some permanent problems. I didn't ask what they were. I was just amazed that he would say something like that right off the bat. Ugh. That man is always good for one thing - a strong dose of reality. Oh well. Never say never.

At the beginning of August I was looking through Abby's Friend magazine (a church publication for children). There was a recipe in it for a special cake that President Monson (the Prophet of our church) used to enjoy eating as a child. It was included in this issue of the magazine because his birthday was at the end of the month. I thought it would be fun for Abby and Spencer to color a picture for him and send it on his birthday, along with a picture of them eating his favorite cake. We had the kids color a sign that said "Happy Birthday President Monson." Abby used to color pages just like that and send them to our out-of-state relatives for their birthdays (my dad still has his hanging on their refrigerator from a year and a half ago). Then we made the special cake and ate it. We also had Abby write a letter to go along with it. Well, I wrote it, but I asked Abby what we should say and what questions to ask. She obviously didn't contribute at all, but she knew what we were doing. I really just wanted her to tell him that she had a brother named Spencer and then to ask him if he liked that name, since it is President Monson's middle name. I don't know why, I just thought that would be something that would be a big deal to her - the same name. We told him about the birthday cake and asked if he got a lot of birthday presents. Happy birthday President Monson!

Last weekend we made a quick trip down to Tucson to watch Anthony's youngest brother play in the first varsity football game of the season. He is a senior in high school this year and we had fun cheering him on, especially when he scored a touch down.

Showing off our 'Tiger Pride'

Abby seems to be doing really well in school. Her teacher says she doesn't try to gag herself while she is there, so I think that means she likes it! On Thursday they sent home all of her artwork for the month.
{I ♥ preschool}