Sunday, May 17, 2015

Day +192

After getting a good report from our doctor, Carter was able to go to school and play kickball with his class. His Tcell count was high enough that she felt he would be ok around the class as long as no one was sick. I'm not really sure what the Tcells mean, but I do know they are indicative of a working immune system. His class won the kickball tournament! He was stoked. It was great for him to be normal again. A lot of the kids were confused about his appearance. He looks a lot different. But don't worry about his confidence. He is very full of himself and composed a song entitled "I Be Sexy", which listed all the ways he was sexy in his daily life. .

Carter is on 0.3 for his dose of cyclosporine. Tomorrow he goes down to 0.2. When he finishes that medicine he gets to begin the process of getting his broviac line out of his chest. Which will be great because he can go swimming!

He's going to go to camp this summer. It's a week long and he will be without us.  I think he's going to have a great time and learn a lot from the other kids. They are having a talent show and he asked if he could learn a Michael Jackson dance for his talent. We are still working on that. Motherhood took a large amount of my rhythm and dance ability.

Overall, we are trying to rest, have fun, and enjoy our time together. You never know what tomorrow will hold. You've gotta love your family like there is no tomorrow!


Monday, May 4, 2015

Day 179

I'm always so disappointed with myself when I see how long it has been since Carter's last update. However, with all that went on this weekend as well as all that's planned for today, I think today is as good a day as any to give an update! 

First, what we have going on today..
Today is Carter's visit for his day 180. He has been weaning off of his cyclosporine, the main, important, immunosuppressive medicine that he has been taking since his transplant. His least favorite because it tastes disgusting. It's also the reason he needs other meds for his blood pressure and heartburn, etc. So, we are down to 0.4 ml from 0.8 and we are all excited about him being done with so much medication. 

Today he will get another bone marrow biopsy, an ECHO and an EKG. Those will basically check his heart function I believe. So far he's passed every test with flying colors and I hope to see the same today. 

A milestone of day 180 is supposed to be that you are allowed to resume semi-normal activities like school, so we will see how his doctor feels. We still haven't done any immune system studies to see how his is functioning and though he seems to be healing well, all counts have been up and in healthy range for months, his docs are careful. Which I can appreciate. 

We tried to go swimming this weekend with his broviac line covered in tape. Needless to say that didn't work. I don't know how much swimming he will be doing until he gets that lovely thing out. Hopefully it can go soon. 

I think the next steps for his treatment are to see how he looks today, continue to wean him off his medicine, so far he has had NO adverse reactions or signs of graft vs. host that we can tell. However, he did get food poisoning about two weeks ago and was very concerned about why someone would want to poison him. 

Other than that, he has been FULL SPEED AHEAD. Taking standardized tests, reading Hardy Boys Books, Watching Stampy Long Head videos on Youtube and building awesome Minecraft houses. He also loves playing basketball. (Side note: He had to "kill" one of his cats on Minecraft for some reason and I came in to find him building him a masterful grave complete with a tombstone, cross, and flowers. So his morals are developing as well!)

Now, on to this weekend. 
We were blessed enough by the wonderful Mitchell family to be invited to experience this weekend with Carter's favorite UM player, Duke Johnson. 

We got to meet and spend time with him and his family, watch the draft and be there to share his special moment, and Carter and I also watched our first fight while there. 

It was an amazing weekend and I can't thank Cassandra and the rest of the family as well as Duke for letting us be a part of their family too. They really are some of the best people you could meet and we are so happy for Duke! 

I'll post some pics of that side of the weekend when they become available, but for now, here are a few of us enjoying a lovely trail and Jensen Beach. Derrick is really ready to move to Florida after seeing that blue water! I need a little more convincing before I leave my mommy. I don't care how that sounds.

<3 Thanks everyone for the continued prayers, love and support. 
I noticed on Google that those who searched for Carter also searched for Fanconi Anemia. So thank you to all who have helped to bring awareness to this condition and sought to provide help and care. 

If you'd like to donate to help research a cure you can do so here:

Jungle man. 

I adore him in that hat. 

Side note. A recent article came out about our weekend here: 

Guess I should have posted that earlier, so consider yourself a TRUE Carter fan if you're still reading, so you get the good stuff. 

Anyways, they posted a pic of my baby looking rough from his pre-sexy-up-haircut days. I'd like you to refer to the above picture that was taken Saturday for what Carter TRULY looks like now. 

We love you Florida!