Ryan's & Alyssa's Web Page

Welcome to Ryan's and Alyssa's Web Page. They both have Krabbe Disease and this web page is devoted to keeping friends and family updated on both our children.

Journal

Thursday, August 28, 2008 11:50 AM CDT

Hi Everyone,

New Photos Added
I can't believe that next week is already September. This summer is certainly flying by.

Our Summer started out with a trip back to Duke. We haven't been able to travel with Alyssa for a few years but now she has been stable and we were able to go!!! It was a difficult trip down with many stops for administering meds, diaper changes, suctionings and position changes. We finally made it down after 12 and a half hours but we already were dreading the trip back home.
It felt very strange at first to be back down at Duke. It was filled with very mixed emotions. It was however exciting to see some familiar faces, the Gwins,Kelly and her family, Mary(our old nurse),the Tierneys, Sue Wood and of course Dr. K!!! They all were very impressed with our little lady. Alyssa ate up all the attention and showed off her latest skills: driving her power chair(she loves to go in circles) and talking. She also did fabulous through her post transplant tests. Her MRI came back NORMAL for her age. It is sooo amazing to see the word NORMAL on these results. Dr. Escolar's team scored her an average of 48 months on her cognitive tests. Wow, she is soo smart. I too was impressed while watching her answer these questions. Her muscle test did however worsen but Dr. K wasn't worried and felt her ventilator may have played a part in the result. Dr. K thought she looked great and that someday, Alyssa will be off her vent. Speaking of the vent, Alyssa is able to breath for four and a half hours on her own!! She is also able to use her speaking valve for up to two hours. Her latest saying is "I don't know" with the shrugging of the shoulders and big eyes for the dramatic affect. It certainly works and is the cutest thing!!! She is making so much progress that Duke felt it was time to send her to school. I was and still am alittle apprehensive but they all say she will love it and is quite ready. Alyssa will be starting school next week. She will be going only two days for two and a half hours. This is enough for me. I hope she does well. We will however have to take her out during the flu season and if she gets sick!!! Oh this is a huge step for me!!!!

Katie has had a wonderful summer filled with friends, sleepovers, swimming and camp. She went to day camp for two weeks. There she went swimming, boating, rope climbing, did archery, and tied died a T shirt. She is growing up into a kind and beautiful young lady. I am thankful for her everyday. She helps so much with her brother and sister. They both adore her sooo much!!

Now to my big little man (As Madison Tierney calls him). Well we were all in agreement that it wasn't necessary to put Ryan through these battery of tests. We only did an MRI and an EEG on him. Both showed what we expected to see. Dr. K did feel that Ryan is getting worse and that we need to have a plan for the inevitable. I guess we always knew this in our hearts yet hearing it from the one doctor the only doctor who gave us hope seven years ago was extremly difficult for us. She didn't give us a time frame and isn't sure when but she felt it is important to have a plan in place. After the tears and this conversation, we have come home and started talking with hospice and looking into arrangements. I have to say this is the hardest thing we have ever had to talk about or plan. We are still in the talking stages but know we have some major decisions to make. Both of us feel that if we do this then it may relieve some of the stress later and doesn't mean that Ryan is leaving us tomorrow but we need to be ready for our family's sake. It has been hard on both of us this Summer. Our hearts ache. His seizures have gotten worse and we added yet another medication on his already full schedule. He seems to be stable in all other areas and we continue to get some of his smiles. Oh, how we treasure these!! Hearing this wasn't new to us, we still know that Ryan can leave us tomorrow, next week or even a year from now. I think is was hearing it from Dr. K as I mentioned earlier. Both Bill and I hoped that after seven years, Ryan would be in a different place (maybe seeing or responding to us more) but he never got better. Please, please pray that when our little man has had enough, we are able to let him go. I have nightmares about this everyday and I am so afraid of our future. We have been blessed in so many ways and are surrounded by family and friends who understand our situation are have helped us tremendously. We also would never change anything and love our three children more than we could ever say.

I hope you are all having a great Summer with your family. Remember to cherish these moments and savor them!!!

God Bless

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Hospital Information:

Duke University Medical Center
Erwin Road
Durham, NC 27707
919-489-2402

Links:

E-mail Author: wkristoff@mbakercorp.com