Jayden has to wear a masks when
around new people or big crowds!
Jayden had another doctor appointment today he had some blood work (no picture of that today since I was holding him down) and he had a weight check. He gained 100 grams, which is equivalent to 6 grams a day. It is not impressive to say the least but at least he didnt lose weight! We are hoping he will continue to gain but who knows Jayden's life is everything but predictable. With 8-10 loose stools a day I dont see how he is expected to gain weight. He has another appointment next week so we will see if from here to there we can think of something that might fix his stooling problems. We also sent out a letter to the donor family today, I've been writing a little at a time the day Jayden was in surgery and a monthly update ever since. We do not know if they will receive the letter since they have a choice whether they want to receive it or not and if they do receive it there is no guarantee they will respond. We are aware of all of the above and are ok with whatever they choose. We do hope they know just how much they have given us and how nothing can ever show our true appreciation for their gift. Although I dream of the day I can wrap my arms around the family, thank them, and have them witness the miracle they created I have to remember they lost their child so that I could keep mine. So even if they were able to give this amazing gift they might not be ready for anything else. I have to respect their grief and their decisions and just pray that in their hearts they will know how much they have given us and we will be eternally grateful. I will continue to pray for them and their angel.
Praying for Jayden -- did you ever get any results from the extended hospital stay last month?
What an amazing process, organ donation, I can't imagine how often you think of and pray for the donor family who you don't know physically, but know in so many other realms. Such a gigantic concept, it's hard to wrap my mind around it all.
Yes we did it completely skipped my brain to post on FB everything was negative they have no clue what is causing the diarrhea. I suggested the milk so they changed it and that has made it better but it is still there. This might sound weird but I wish something would have came back positive or something so we could know how to fix it rather than just keep on "monitoring" his stools so frustrating!
Organ donation is the most selfless amazing thing anyone can do and words cant express the appreciation and love etc etc we feel in our hearts for the family who are now our Angels and heros as well!
Hey hon... I hope they can help Jaydens problem with loose stools soon. His poor little bum. :( I'm glad to hear he didn't lose weight! Hopefully when they get the poopy problem fixed he will put a little on. How is his appetite? I think I remember you saying it wasn't so great? We recently put Cole on an appetite stimulant (periactin, it's an antihistamine) and it's helped Cole a lot. He's gained 14 ounces in the past three weeks!!! He's at 21 lbs 4 oz. now, which is great... Still not on the charts but I think it's great and I'm happy. I'm not sure what jayden can have with his transplant, but maybe something to ask about?
About the donor family, I think it's great that you understand that it may be too hard for them to even receive the letter. But I hope you know that they know how thankful you are for the gift they've given to Jayden. Thankful doesn't even explain how you and Jamie must feel, and I'm sure it was difficult for you to put that into words but I'm sure you did a wonderful job. Keep us posted on what happens. I do hope one day you can wrap your arms around them and thank them personally... And they can wrap their arms around jayden and know their child lives on through him, they helped create a miracle! Sending hugs to you and that handsome man of yours (Jayden... Not the other one! Sorry Jamie... Lol)
Praying for Jayden -- did you ever get any results from the extended hospital stay last month?
ReplyDeleteWhat an amazing process, organ donation, I can't imagine how often you think of and pray for the donor family who you don't know physically, but know in so many other realms. Such a gigantic concept, it's hard to wrap my mind around it all.
Yes we did it completely skipped my brain to post on FB everything was negative they have no clue what is causing the diarrhea. I suggested the milk so they changed it and that has made it better but it is still there. This might sound weird but I wish something would have came back positive or something so we could know how to fix it rather than just keep on "monitoring" his stools so frustrating!
ReplyDeleteOrgan donation is the most selfless amazing thing anyone can do and words cant express the appreciation and love etc etc we feel in our hearts for the family who are now our Angels and heros as well!
Hey hon... I hope they can help Jaydens problem with loose stools soon. His poor little bum. :( I'm glad to hear he didn't lose weight! Hopefully when they get the poopy problem fixed he will put a little on. How is his appetite? I think I remember you saying it wasn't so great? We recently put Cole on an appetite stimulant (periactin, it's an antihistamine) and it's helped Cole a lot. He's gained 14 ounces in the past three weeks!!! He's at 21 lbs 4 oz. now, which is great... Still not on the charts but I think it's great and I'm happy. I'm not sure what jayden can have with his transplant, but maybe something to ask about?
ReplyDeleteAbout the donor family, I think it's great that you understand that it may be too hard for them to even receive the letter. But I hope you know that they know how thankful you are for the gift they've given to Jayden. Thankful doesn't even explain how you and Jamie must feel, and I'm sure it was difficult for you to put that into words but I'm sure you did a wonderful job. Keep us posted on what happens. I do hope one day you can wrap your arms around them and thank them personally... And they can wrap their arms around jayden and know their child lives on through him, they helped create a miracle! Sending hugs to you and that handsome man of yours (Jayden... Not the other one! Sorry Jamie... Lol)