Today marks 1 year since my daughter Amelia received her Kidney Transplant! This is a copy of the post I put up today on our Carepage, the family blog that keeps grandmas and friends informed of what has happened with Amelia.
I have posted links to copies of that Carepage, the posts from the day of the transplant and the day before. These links are on my website. If you click any links on those pages, it will direct you to the Carepages site where you will have to register in order to see more. Feel free to, but you don’t have to. This is the direct link to her page: www.carepages.com and her carepage name is ameliarosematthews.
anyway, this is a direct copy of todays post on the Carepage:
12 May 2010
Well friends, it is finally here, Amelia has had her new kidney for 1 year!
We keep looking back at how fast it has actually gone. From the Transplant on the 12th, to her going home on the 18th (6 days in the hospital for a MAJOR surgery kids, she is a trooper!).
Through all of the clinic visits and blood draws, 2X per week for the first month, 2 blood draws and 1 clinic per week for the second month, Every other week clinic and weekly blood draws for the third month, every other week clinic and blood draws for month 4-6, and then to once a month. After our next visit in June, We will be on quarterly clinic visits and monthly labs. That is quite a drop!
By my calculations, that has been 32 blood draws (plus a couple of unscheduled ones for illnesses) over the year, 20 of those coming in the first 3 months! That was a lot of poking for Amelia. Now, at once a month, it is much easier on her. She is still a trooper with it though. She stick her arm out and lets them poke her, and then tells everyone she sees where she got poked!
The nurse at transplant clinic gets told which arm to do blood pressures on because she can’t do them on the same arm as the poke! I really love the determination of a 4 year old. Some days it is interesting to see just how much she remembers and knows about the procedures she has gone through.
She continues to do very well in her overall health. There have been a couple of bumps over the past year but nothing that required her to be hospitalized for. We are pretty proud of that, many kids who get transplants are back in the hospital multiple times.
We have kept her away from many situations that could compromise her health and we don’t take her many places if she is sick. That has helped. We are looking forward to getting back to church and church activites more.
Right now, she is only on 2 regular medications, much better than the 8+ she was on last year after transplant. We tapered them down and now, she is only on the 2 anti-rejection meds that she will be on for the rest of her life. Just a reminder, these medications keep her immune system slightly suppressed to prevent rejection. This is why we have to be careful and still steer away from sick people, she can’t fight diseases as easily as the other kids.
It has been a wild ride so far, we hope to keep going in the same direction. Amelia is currently in the final stages of potty training, something that was much delayed with dialysis and the fact that no urine is produced with no kidney’s. She is finally figuring it out and is almost half way to her one month “no accident” prize!
We also wanted to thank Carol again and again for her gift to Amelia. It is still a wonderful thing that we think about every day. When we think back to dialysis and how we had to structure our lives around it we can’t help but think how Carols donation has helped out whole family. We have much more time together.
We are looking forward to having a barbecue with Carol and her family this Saturday if the weather will cooperate. We will have to see.
And finally, I thought I would list the links back to the day before and the day of the transplant, if you are interested in reading about it as it happened. Brenda still has a hard time reading some of these and so do I. I am working on a book right now about this whole experience and I am going to use these carepage posts extensively. As for today,
Amelia Meets Carol 5-11-09, day before transplant
Day of Transplant
Update 1 of 5
Update 2 of 5
Update 3 of 5
Update 4 of 5
Update 5 of 5
We wanted to thank all of you who have been with us since the beginning, and all of those who have joined us on the way over these past 3 years.
I hope that we have been able to explain what has happened to everyones satisfaction.
I hope that we have been able to give some help along the way (Hi Pollock family!).
We appreciate all of the support that has been given to us over these 3 years. We have had a wonderful outpouring of love and support from all of you. Our lives have been blessed and we feel like you are all a part of our extended family. Thank you again and again.
We are coming to you live and kicking 365 days into the new kidney!
-Justin
PS look for new pictures!
