So one of the new favorite things to do is to climb under the crib, play with the toys and then climb down. It makes me nervous cause he likes to climb out head first onto the hard hospital floor. But at least he is keeping his stubborn independent spirit :) He is doing ok today. Brent and I even got to sneak away to the sacrament service that they hold here in the hospital for familys. It is amazing how strong the spirit was at the meeting. Even though it was only a half an hour it was a wonderful peaceful half hour.
I thought that I would get a new and updated picture of his friend and constant companion. We now have 5 pumps that run for at least 18 hours out of every day with meds and lipids and TPN (IV nutrition) and often platelets or blood. It is kinda bulky and he has about that many tubes connecting him to it. Crazy! Needless to say it constricts movement. Things are still going well. He really doesn't eat much at this point. He has one mouth sore but considering he could have them all over in his mouth, and throughout his GI tract we are feeling pretty positive about it. Haven't seen any hair loss at this point or any new cells but that is also normal! We are good and so is Aiden.
So one of the new favorite things to do is to climb under the crib, play with the toys and then climb down. It makes me nervous cause he likes to climb out head first onto the hard hospital floor. But at least he is keeping his stubborn independent spirit :) He is doing ok today. Brent and I even got to sneak away to the sacrament service that they hold here in the hospital for familys. It is amazing how strong the spirit was at the meeting. Even though it was only a half an hour it was a wonderful peaceful half hour.
I thought that I would get a new and updated picture of his friend and constant companion. We now have 5 pumps that run for at least 18 hours out of every day with meds and lipids and TPN (IV nutrition) and often platelets or blood. It is kinda bulky and he has about that many tubes connecting him to it. Crazy! Needless to say it constricts movement. Things are still going well. He really doesn't eat much at this point. He has one mouth sore but considering he could have them all over in his mouth, and throughout his GI tract we are feeling pretty positive about it. Haven't seen any hair loss at this point or any new cells but that is also normal! We are good and so is Aiden. 
Well it is impossible for me not to leave a note! I loved the Joseph Smith movie. I am glad you and Brent are holding up and we love you so much and admire all that you are doing. Love you and hugs from wyoming!
ReplyDeleteThat is so cool that they have a sacrament meeting!! Yesterday on the way home from church we were just talking about how important and how much our spirits need to be recharged each week with spiritual things. (not just on Sunday's but taking of the sacrament) A man in our branch said our spirits our like cell phones and they need to be charged or the battery dies! I can only imagine how draining it is to be at the hospital ALL the time and how blessed you are to have so many wonderful spiritual things close when you can sneak away!! hugs and prayers
ReplyDeleteAiden's room looks like "2001 a space odyssey"! I love the picture of him climbing under the crib - glad to see him moving around and keeping his spunkiness! So glad you've been able to spend some time with the girls and that you've been able to get out of the hospital occasionally. We love you!
ReplyDeleteThanks for the updates! We will keep sending our thoughts and prayers your way! We love you guys. (PS...you have to check out my blog, ya know in all your spare time haha, for all of the Emmy updates. I'm warning you it's picture heavy.) Give kisses to Aider!
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