Medically, Sam began the process of re-vaccination in the late Spring. She has since then received three rounds of vaccines. Like a newborn, this often means receiving several shots at one time. These clinic days are pretty tough on her as they begin with a large number of blood draws and "pokey pokes" followed by 3-4 more "pokes/shots" to both of her legs. For at least a day or two after she is very sore walking on her tender legs. These days are often every 4-6 weeks though now, which makes it bearable. The big question still remains whether these vaccines will be effective or not given her continued low IGG levels. On our next visit in early September, we will test her "titers" to see whether her immune system is strong enough to post an adequate response to the vaccines she has received making them effective or not. Basically her body has to respond strongly enough to the "invaders" to remember or recognize them if she ever encountered the live virus. She will NOT begin "live" vaccine administration such as measles (MMR etc.) until at least two years post transplant. So even though her immune system is MUCH stronger than it has been, she remains at higher risk for viral infections and diseases she has not yet been vaccinated against. We are VERY hopeful her titers will show strong numbers ensuring our peace of mind that things are on track and she is progressing as she should. We are still cautious about starting her in a school/ larger group kids environment until we have a better understanding about her vaccination response and ability to fight more general viral infections. She could "technically" start preschool this year but we will not be sending her for at least one more year at this time (which Mommy doesn't mind at all!)
This past week, we also decided to remove Sam's G-tube. In many ways this is another great step towards her leading a more "normal" life again. We have successfully taken her off all prescription medication and were only using the tube for vitamin/mineral supplementation and to keep her digestive track moving (which continues to cause her problems at times following her colitis etc.) Now I am using trial and error with some rewards/"bribery" to find some quality vitamin and mineral chewable supplements that will work for us. She did really well overall having her tube removed. The exterior site has thankfully closed very well and quickly. The only thing we have to watch out for is whether it is healing properly from the "inside out" as well given that the surgical site is not just superficial but goes into her stomach. That we can obviously not tell as parents just from observing and caring for the site from home so she will be examined and possibly have an ultrasound at the next clinic visit to make sure the internal site is healing as well as it looks on the outside. There is a chance she would need to have an additional surgery if the internal area is not healing but we do not anticipate that at this time. Kaeden observed (per request) when the tube was removed and was a little shaken up by it but in her typical fashion, Sam was back to smiling soon afterwards and in turn, so was he! After having PICC lines in both arms, then down to one, and a G-tube for the past year and a half, Sam is now completely "tubey free!" Of course, there is a part of me that is anxious about setbacks and how we will manage if there is a need for a return of medications etc. but as always, we will just cross that bridge when we come to it!
In more exciting news, this past weekend, Sam turned 3! We were so thrilled to celebrate with family and close friends at the house and Sam truly had a BLAST! We are always so eternally thankful for our little girl's physical health. Seeing her starting to grow again and work her way back up the growth chart, run, jump, and play outside is truly a remarkable feeling. Equally elating to us though, is that her smiley, funny, outgoing, and bubbly personality is growing again too! She fought so hard to earn her physical health back, but she fought equally hard to become Sammi again! Clearly we are biased, but anyone who is around her is always drawn in by her infectious smile, positive attitude, and fun-loving energy (ok also her adorable curly hair that chemo provided). We are so excited about the idea of more and more of the world getting to know her now too!
Thank you SO much to our families, friends, and ALL the people who still ask, care, and follow Sam's incredible journey. There is so much kindness in the world and I'm so glad we have been witnesses to so much of it! Please remember to sign up at www.bethematch.org if you haven't already! We have gotten a lot of letters and notes from people who have joined and it is such a great feeling to think Sam's story could hopefully help someone else someday! So here's to a happy, healthy, and "tubey free" Fall for all!
