Home

"O God, protect our going out and our coming in; Let us share the hospitality of this home with all who visit us, that those who enter here may know your love and peace." (adapted from Blessing for Your Home, Catholic Household Blessings and Prayers, Bishop’s Committee on the Liturgy)

I mentioned a couple of weeks ago that we just learned that our insurance company will not be reimbursing us for any of our housing expenses related to the transplant process. Since we had been told that our insurance company would cover all of our transplant related expenses (including lodging and travel) this was quite a shoock to us. The Family Support team were all wonderful. They imediately began researching several different options to help us find a place to live and they helped us identify some other possible financial resources. We just learned that we will be able to move into a "House of Hope" apartment here for the next couple of months while Olivia has to remain close to the hospital. The "Houses of Hope" apartments are provided by the Evanosky Foundation. Please follow this link to learn more about the Evanosky Foundation and the "Houses of Hope": Evanosky Foundation. We have so many people to thank for this wonderful opportunity it's hard to know where to start. We have to thank the Evanosky Foundation, the Family Support staff here at Duke, our social worker, and most importantly we must thank all of you who have been praying for us and our housing issues to be resolved. We moved out of our home in Washington on June 9th and we've been living in hotels and hospitals since so we are very much looking forward to having a place to call home! Our blessings do not stop there, we were also able to receive a very generous grant from the Pennies for Nicoll Foundation to assist with other expenses. This outstanding organization provides support to families dealing with MPS. To learn more about the Pennies for Nicoll Foundation please follow this link: Pennies for Nicoll.

We've been so very blessed! It's still a little hard for Mike and I to believe that all of these wonderful things are happening in our lives. Thank you so very much for keeping Olivia and our family in your prayers!

Just time for a quick update...day +38

It really will be just a quick update tonight, I'm exhausted. Olivia is doing really well. We received the results of her chimerism test (I find this part of the transplant process fascinating and have tons of information on it but I think that it's explained pretty easily here ), Olivia is almost 99% donor cells! Olivia's blood type has officially changed from AB+ (the blood type she was born with) to O+ (the donor's blood type). Around day +100 they will also do another blood test to determine if Olivia is producing the enzyme that she has not been able to produce. This won't mean that she's "cured" but we're hoping that it prevents further damage. Right now we're moving forward and we are hoping to be discharged early this week! Olivia is doing a great job at taking the majority of her medications by mouth and she's eating very well so things seem to be falling into place.

I have absolutely love having Peter around. I cannot believe how much he has changed in just 2 short months. We got to spend a few precious minutes together as a family of four over the weekend and it was wonderful. Mike and I got to spend some time together over the weekend thanks to Aunt Amy hanging out with Olivia. Olivia is really enjoying her passes away from the hospital. She gets so excited when we leave the hospital! It's heart breaking to hear her get upset and cry as she realizes that we have to head back to the hospital but it's getting a little easier.

We've taken tons of pictures and I'll post some of those soon when I have some time, maybe another smilebox greeting since those seem to be so appreciated.

The best part of the weekend was that I got to spend 2 whole nights with Peter all to myself. It was wonderful, I miss him again so much already. I know that Amy and my mom missed him but I loved cuddling with him!

Siblings

Olivia is doing well. Today is day + 35, WBC is 22. Olivia is officially off of the IV nutrition (as of Tuesday, day +33)! At this point we are waiting to make sure that she is able to continue to maintain her weight. They are continuing to wean her off a couple of her medications and she is now taking 6 of her medicines by mouth and we just have one more to go. Then we hope we will only be going home with 2 IV medications! We have a tentative discharge date of Tuesday, September 1st! I don't want to get too excited, we want to make sure that Olivia is really ready to leave the hospital but just the thought of leaving next week is really exciting!

It was really nice to see Olivia and Peter together today. She was so happy to see him. I just love these pictures that I got of the two of them together. Do not be alarmed by the poka-dots on Olivia's head, that was an art class accident.

Reunion

For the first time in 2 months I was able to hold Peter today. I was so excited to see him but I didn't have huge expectations for our reunion. Peter was actually much happier to see me than I thought he would be. I don't think that Peter recognized Olivia at all. When my mom and Amy arrived with Peter we met them in the hallway so Olivia had her mask on and she's bald now so she looks very different from the last time Peter saw her. Peter has been stuck riding in the car for the last 3 days and he was exhausted but he was still in a pretty good mood. He and Olivia enjoyed playing with some of her toys. Peter has changed so much over the last two months, he has 2 teeth, his baby hair is gone and has been replaced with real big boy hair, he's crawling, and standing, and waving! (check out the video) It was really hard to see him reach for Amy or my mom when he was upset instead of reaching for me. But I can honestly say that it made my heart ache but not break. It's good to know he's so loved and well taken care of.