Thursday morning, I had the opportunity to volunteer in Chloe's preschool class for the first time. Wow!! Chloe is becoming such a big girl! She absolutely loves school! Her teacher said that she is one of the best sharer's in class! Go figure? I saw my little girl become so independent by going to different stations on her own, bringing her name plate with her and sticking it to the proper station. She had a smell and taste test with her teacher, then traced her name on another station, checked out books on the book mobile, played with trains and puppets, had conversations with her friends, sang bible songs, learned about why God made her special, played on the playground, etc... Wow!! how fun it was to be back in pre-school again! Her teachers are so loving and caring and they look like they are having a blast with the kids. Chloe gives her teacher a big hug before she goes home. Just what I was looking for and is perfect for Chloe's personality!
Later in the day we went to Hopkins for Wyatt's pulmonary check-up. The following changes were made. Dr. C would like to see Wyatt trail off oxygen during the daytime. We tried this in the spring, then Wyatt went in for surgery in June and he needed oxygen ever since. So he said he would only like to make one change at a time. So the order is to try gradually taking Wyatt off oxygen during the day with frequent spot-checks. If he is successfully keeping his stats up, then call him in a month and we will start to wean his diuretics. If that is successful, then Wyatt will go in for a sleep study. The goal is to have him off oxygen as much as possible. I am so proud of Wyatt and it's weird taking him off oxygen. Sometimes, I think those tubes define who he is... but it's not true. Wyatt will be two years old next week and he has become just a bundle of joy! His personality is so humorous and lovable. He is so patient, kind, and lovable. His new thing is snuggling on the couch with you. He also acts so much like a two year old... pushing and taking things away from his sister. And doing the opposite too.... handing his sister a book and asking her to read it to him. It's so funny when Chloe is whiny or cries... Wyatt just looks at me and says, "girls, girls, girls."
When Wyatt is off oxygen it's so STRANGE.... the house is so quiet with out the concentrator running, and when we go out, it's one less thing to carry with him. We are taking baby steps.... today we went to the farmer's market and I put the oxygen tank in the stroller with us, but did not put it on Wyatt. His stats were between 95-97 percent. I am also checking his o2 saturation like crazy when he is off. So please keep your fingers crossed that this will be successful!
I also started experimenting with Wyatt's food. We have a GI appt. Oct. 20th and I wanted to discuss starting to feed Wyatt bolus feeds rather than 20 hours a day at 70ml's an hour. For a couple of times, I injected half hours worth of food in his belly at once- 35mls and he seems to tolerate this just fine. I usually do it when we go to the playground, a friend's house, etc... so he doesn't have to wear his backpack and just be a regular kid! I am hoping Wyatt will want to start pulling himself up and standing if he doesn't have the back pack on him.
I am now in "Operation Big Boy" for Wyatt now that he is turning two years old. This morning was so nice! We went to the farmer's market and got a big bag of local veggies and bread and then we walked to the local library and listened to a banjo player sing and play, picked out some pumpkin books, and played in the children's area. The librarian knows my kids names by heart since my parents and Wyatt's nurse take the kids there during the day when I work. We walked in the front door and the librarian said, "Hi Chloe, Hi Wyatt!!" Afterwards, we came home and made grilled cheese sandwiches with our goodies- homemade bread, fresh garden picked yellow tomato, and my homemade pesto... what a difference the yumminess factor is when you buy fresh stuff!! I want to thank my friend Pat, for sharing her veggies from her co-op. She she is on vacation, she is allowing me to pick up her vegetables from the co-op. How sweet!! Tomorrow we are off to the pumpkin farm!!!
In other CDH news- Vincent lost his battle with CDH. Our prayers go out to his family. Baby Andrew is currently on ECMO, the doctors discovered a heart problem as well. In other medical news, Wyatt's NICU and 6th floor buddy Drew just had a major 12 hour surgery and is now in the PICU resting. Please keep him and his family in your prayers.
No comments:
Post a Comment