Naomi is doing really well. Her hair is coming back more quickly. Her labs have all been pretty good. Her IgG levels dropped below 500 which meant that she received IVIG this week. She feels a bit more tired and her appetite is not there as much. But that will only last a few days.
We are so thankful Naomi is doing as well as she is. This transplant has certainly been harder on her. She has some tired days. Over the past two to three weeks she has gotten to the point that taking meds is just a habit and no longer a struggle or something she puts off. It has been life changing for us as a family and we are all so much closer and supportive of each other. There is nothing like being apart for months to remind us how important we are to each other. Our lives are happier having gone through such difficult months. We are more thankful for each other even if we didn’t know that was necessary or possible.
On Sunday evening Naomi was able to go to the Gymcats banquet. Her coaches were so nice to invite her. She was even presented with the “Gymnast of the Year” Award. Her coaches had amazing things to say about her and to her. I am without words to describe how much I appreciate them including her in the banquet and recognizing her. When you call Gymcats their tagline is “the place where kids matter most” and I can say that is truly the case. She gave me her certificate before the group photo was taken.
We made sure her line was well covered and she was able to go into the water up to her hips. She really had a lot of fun.
We also celebrated Lauryn’s 13th birthday this weekend. Lauryn is a beautiful girl inside and out. I am amazed by her. Generous with her sisters, loving and helpful to all, and a good student, we are so proud of her. A third teen in the house!
We continue to work diligently to finish up the school year. It will happen this week and then we will only have Math to complete over the summer. As I prepare 2017-2018 supplies, I am looking forward to putting away ALL the school stuff (except math) for at least 6 weeks or so beginning ASAP.
We have had a very busy few days here and that will continue through much of this week. Our Irish Dance school hosted a competition on Saturday and then we started dance camp the next day. With 3-4 hours of dance per day, the days are disappearing fast.
Naomi’s appts lately have been good. She is doing well dropping her blood pressure medicine to once a day. She may get to drop that completely this week. Her counts are a little bouncy right now. Her platelets went down to 225,000; hemoglobin holding steady at 12.1; ANC down to 1400. We know these fluctuations are normal. They just cause us to pull back a little more and be more cautious of exposure.
She feels great and has been enjoying water balloons, water gun battles and lots of outdoor time. It has been unseasonable cool for a few days. So we are getting in outside time before it goes up to 111-115 later this week. Yuck!
This family touched my life at a young age. Losing their daughter, Jenn, in a bus accident, they turned their heartache into a blessing. They created a Ronald McDonald House-like facility called Jenn’s House in the Lehigh Valley. They also created a scholarship to fund one twirler to attend Cheryl Chickey-Cipolone’s summer baton camp. I was the first recipient of that scholarship. Later in life, I was in the situation of needing to stay at a Ronald McDonald House myself while Naomi had her treatments in California and Wisconsin. When I looked at volunteer families and the staff at RMH, I thought of the Dillman family often. My heart is sad to hear she was battling cancer. May she rest in peace.
Naomi had clinic last Friday. It included her monthly pentamidine dose which is given through IV over 2 hours. In Wisconsin, it was administered through a nebulizer. Her labs were fantastic with 259,000 platelets, 12.6 hemoglobin and ANC 1900.
Monday’s appt was labs only. Her reports were all good again with just mild fluctuations of ANC 1600, platelets 239,000 and hemoglobin 12.3. It is interesting to me that morning labs are ALWAYS lower for her.
I am getting better at dressing changes at home and we also disscovered a way to cover her line with Glad press n seal so that she can actually shower and not just bathe. She loves to shower and her mood shifted immediately after her first shower. She seems so much more optimistic. Anything we can do to help her feel “normal.” Over the next few days we will be doing only 8 hours of fluids to see how well she can do with taking in fluids. If her creatinine levels are good on Thursday, then we will likely reduce the prescription.
We have been very busy trying to wrap up our 2016-2017 school year. Grading, teaching, scrambling to finalize things for each child. I have a meeting Thursday afternoon (telecon) with our advisor to plan 2017-2018. Aaron and I have will have SIX homeschoolers! Caitríona-K; Niamh – 2; Naomi – 5; Lauryn – 8; Malakye – 9; Micayah – 11. Unbelievable.
We continue to have a lot of family time. Games, puzzles, movies, jokes, anything to keep us cool while it is over 100 outside every day. Desserts daily. All our favorite foods. Naomi and I are still thrilled to be home. Home seems like somewhere I never want to leave. I found a renewed fondness for housekeeping by not being home for 3 months. We certainly don’t take things for granted. Each day is precious.