Meds Go Down

So happy to report that the spreadsheet of medications is shrinking! As of this week we were able to take two medications off of the list; cyclosporin and the blood pressure med. This takes us down to six doses a day!

Now for the frustrating news, because the steroids have gone down the issue of the blood sugars has come back up. The high dose of steroids was helping to keep her blood sugar where it needed to be, so without that "help" the numbers don't look as good. We are keeping a close eye on it and testing her, in the am, every few days. We have an appointment with the endocrinologist in two weeks. More to come on that.

Erica went to Luci's birthday party yesterday and it was such a special moment! I loved seeing her play with the other kids, she was so sweet and loving to the other kids. When we all sat down to eat she folded her hands and made us all pray together! I will post pictures from the party soon.

That is the quick update for now. We are all going to the Keaton Raphael Memorial Golf Tournament Luncheon tomorrow where I will have the opportunity to speak about our journey and thank everyone for being involved with this amazing organization.

Love and Gratitude!

Little Things

It has been nice to leave Erica's birthday blog up for awhile, almost like a long pause, it has been a time of celebration.

In these last couple of weeks we have been silently dealing with a few little things related to Erica's health. First, there is a question about her blood counts from a couple of weeks ago. Her white blood count, hemoglobin and platelet count all dropped. Now, this is what happens, naturally, in a body when there is a viral infection, except that Erica has been asymptomatic. So, we have gone back to weekly counts to track the trend. Last Monday the counts went up, by a small amount. The next blood test is on Monday. Ok, so then we have her skin. She has what appears to be GVHD of the skin again. It is only visible on her legs and so we are back to twice daily topical treatments. The GVHD is just something that we need to control and eventually it will subside and/or we will just continue topical treatments.

On a very positive note, and yet another reason to celebrate . . . Erica has been out and about! She got the green light to be outside for about an hour each day, without her mask on! (Of course she wonders, "where is my mask?" but is perfectly ok without it). She likes to be in the front yard where she can see the kids playing across the street. They all run over to the sidewalk, careful not to get too close, and they wave and say "hi" to her. It is a sight to behold.

Next week, Erica will go to her first birthday party. Her friend, Luci, is turning two and she is have a party with three of her good friends. I have Luci's present wrapped and Erica is barely grasping the fact that these things called "presents" can actually be given to someone other than her! And so begin the lessons of life!

We are still balancing all of it, the joys and the fears. Erica is feeling really well and that makes the balancing act easier. We see this little girl laughing and learning and it is almost surreal; it just seems like such a gift.

Happy Birthday Erica!

What a wonderful day! Erica's birthday started off bright and early, believe me, she knew it was her special day. She put on her birthday dress after breakfast and she felt like a princess . . . I could tell. At about 10:00, we had all the grandparents, God moms and Erica's best friend Luci over for a little party. Erica did so well with all of the attention. I loved seeing her with Luci; it has been almost a year since she has even been able to play with another child. They did so well and interacted like it was old times (back when they were 1)!

One story I just have to share is about yesterday afternoon. Our neighbors got together with their children (making a total of 5) and called us to tell us to have Erica put her mask on. About five minutes later, they came to the door with 24 balloons and about 5 big, colorful, beach balls and sang the "Happy Birthday" song to Erica. It was the sweetest thing ever . . . Erica just staring out at these sweet people, in awe of all the balloons, just trying to take it all in. People are so good.

Between yesterday and today, we are once again reminded of the love the surrounds us. Cards, phone calls, hugs . . . this little girl has touched so many lives in her two years. I told her tonight as I was putting her to bed, just how proud I am of her . . . and in that moment I literally felt my heart overflow.

More to come on her birthday and certainly more photos; but it you want a sneak peak, I added photos of the big day at the end of the slide show!
Love, Love, Love