It's early Friday morning, and we're just about ready to jump in the car and head from Ohio back to Utah - 30 hours of driving; 10 hours a day for 3 days. KT went through a little procedure yesterday to even out the wires on her R.E.D. and to check her bone growth. All looks positive. We only have to turn the upper screws about 3 more days. She is so excited (as are we all!) to get back to her beloved home. Here's Pam's report from yesterday, since there's no time to write this morning:
Katie has shown such progress in the last few days. She has begun to use a straw well and will drink an entire juice glass size of milk in one sitting. Sometimes she drinks even more than that. She has also been motivated to try to eat. Her mouth must feel enough better to allow herself to experiment with tasting food. You saw the evidence with the photo of the spaghetti plate I sent yesterday or the day before. She probably ate approximately, ¼ cup to ½ cup of spaghetti. One morning she asked me to cook her an egg. She ate the “white” because she said it “slid down better”. Yesterday when she got ready, she asked if she could please go to the kitchen and drink some milk. I said “yes” and she trotted down there on her own. Now this is a big change. She has stuck to me like glue since her Dad left.
Katie has shown such progress in the last few days. She has begun to use a straw well and will drink an entire juice glass size of milk in one sitting. Sometimes she drinks even more than that. She has also been motivated to try to eat. Her mouth must feel enough better to allow herself to experiment with tasting food. You saw the evidence with the photo of the spaghetti plate I sent yesterday or the day before. She probably ate approximately, ¼ cup to ½ cup of spaghetti. One morning she asked me to cook her an egg. She ate the “white” because she said it “slid down better”. Yesterday when she got ready, she asked if she could please go to the kitchen and drink some milk. I said “yes” and she trotted down there on her own. Now this is a big change. She has stuck to me like glue since her Dad left.
Yesterday, we each received a blessing from the Elders. It gave me peace to know the Lords blessing will be upon Katie tomorrow (during her hospital procedure). I’m just so grateful for the Priesthood as a vehicle to receive the Lords light!
We have also been very busy cleaning up the room and packing. We have the car about half packed. Katie and I have our “big” bags in the car and all the extra supplies as well as my sewing stuff. I have had a goal to finish some table toppers and got three of them put together before I packed up the “Lot” of sewing stuff that I brought.
Last night we said our “goodbyes” to some the friends we have made here in the Ronald McDonald house. We have gotten close to Missie Ayers and Taylor, her daughter. Katie has become very close to Taylor and prefers spending time with her than being close to me, since she has detached herself from my side. They have watched movies together, tended Lisa’s baby (fed him and held him) as well as just talked and laughed together. They are big facebook people so, we will stay connected. There are many others whom we pray for and have a relationship with, one is the Miller family, (the other Mormon family in the house, who has a baby boy, who received Kemo and a bone graft, not doing well at the moment, but their faith is so strong that he will make it through.) We also got to see Kaelin, a 12 yr old from Utah we got to know before his kemo and bone graft, out on pass from the hospital yesterday. He just had a birthday, for which Katie had to buy him a balloon and candy. We didn’t think we’d get to see him at all before leaving, because he is supposed to be in isolation. This truly is a house filled with love! Wonderful people here with a strong sense that the Lord is watching over their children and them as they go through incredibly stressful times. You connect to people like a big family would. I often have guests from the Ronald McDonald house come up to me and start talking and asking questions. We share experiences and strengthen one anothers’ faith during that sharing moment. Such a blessing to be here and rub shoulders with such strong, wonderful, faithful people!
Rachael will drive to Louisville airport today to pick up Glenn, who arrives there at 3:15pm. The airport is two hours away and so I don’t suppose we will see him any earlier than 6pm. So Katie will get to see him after she wakes up from the distractor revision surgery. Won’t that be great for her, she misses her daddy SO MUCH!
Katie and I are especially grateful to be returning home. Both of us have been homesick to return. I think Katie has actually wanted to “escape” back to her prior life, but she has been so brave to swim through, (endure), this difficult and painful process. She has discovered that she can get through this kind of tough experience with the Lords help. I know when I first went through difficult health experiences, I was surprised that I came out the other side almost “as good as new”. However, my heart had been shaped, even refined, with understandings I never would have learned without Christs’ tender teachings. It’s amazing what he can do for us if we allow the process to refine and shape rather than choosing the bitter, “why me” route.
I would like to see Glenn put a “picture progression” of Katie on the blog site. Her transformation is incredible! I know that she is not done by anymeans, but the change is so dramatic. One thing I have tried to get Katie to work on is, swallowing her spit and closing her lips. I believe she has embraced both of these things. She is very cooperative and tries to swallow her spit instead of drooling, or closes her lips when I suggest it. Of her own accord, she has also been watching how others form their words. Even though her mouth is mostly closed, she is still talking with her tongue outside the top teeth, so she needs to relearn how to form her sounds INSIDE her mouth. She is smart and with speech therapy will figure this out…….continued healing…. as the blessing suggested.
This has been a summer of great difficulty and stress, and yet, a summer of incredible change and blessing!!! Of course, we are not done yet, but we have a great beginning foundation. We'll see many of you SOON! We send all our love, Pam
Safe travels to you all. We look forward to having you all back. I've enjoyed Visiting Teaching with Chick in your absence. I'm so thankful the outcomes are what was hoped for. Katie is really looking wonderful and it sounds as though the ability to breath without her trach and eat without a g-tube is going to be a reality. See you soon.
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