Six Months Ago 6/17/09

It is six months to the day and date that Ian received his gift of life liver transplant. Hard to believe in many ways that we are at our half way mark to our year anniversary. All day yesterday and today I have been thinking about what we were doing six months ago and how very different our timeline is now.

Ian is down to three meds in the morning and two at night. That is going to be our routine for a long long time now. We are hoping to get him on pill/tablets at some point but for now we are fine with the compounds. The pharmacy we are using is fantastic and we love them! We are still facing some of the side effects from the medications but are managing. So far, the meds haven't produced anything physically to tackle such as large gum growth or cushnoid cheeks.

Ian still has labs drawn every other week and today at labs, he didn't shed even one tear. He is really such a champ! When he gives me a pretend check up, he does labs and even gets the details of srubbing my arm clean before he "gives me just a little poke".

I continue to put special T ointment on his surgery site every night. He reminds me if I forget somehow. He is also very well indoctrinated about Germ-X at this point which I am grateful for.

He has so much more energy now and his appetite is amazing. He finishes dinner often before we can which is a total turn of events from pre-transplant life where dinner would take 2+ hours to finish for him trying to get enough meat/protein into his diet.

We are so grateful for the team at CHOA, for the donor family, for those who helped us fundraise, and our family, friends and our communities that have loved us, prayed for us and supported us.

Infection.....

Ian had his first round of life being immunocompromised with an infection. I took him to the pediatrican here last week. The doctor treated him pretty agressively with three forms of antibiotic to cover the areas affected (eye, ear, nose and under arm). I was pretty worried because if the antibiotics Ian was given didn't work that would almost certainly land us in the hospital at CHOA with the need for IV antibiotics.

Ian is doing great a week out from his start of antibiotics. We are so blessed! He learned how to handle the eye drops great! He even reminded me it was time for them at the end of the treatment cycle.

I continue to use germ-x everywhere we go and stock wipes...but somehow something slipped by my watchful eye. So to you germs out there....be afraid as I am stepping up my watch!

Stud Muffin - 5 Months Post Transplant

Ian is full of energy, sassiness and string cheese. He eats about 3 string cheeses a day and could do more if I let him. One of his favorite lines is "what can Ian have?"....repeated throughout the day even after we have just had a meal, snack, or treat.

His prograf has been increased again so we are again dealing with some nighttime dream issues. Since we a) knew to expect them and b) know how to handle them, this time it doesn't seem nearly as bad.

At 5 months out from transplant date, I continue to wipe down shopping carts when we go out--especially the ones that have a steering wheel that kids "drive". I won't describe the amount of grime that comes off when I do wipe them down but lets just say...even if your kids are not immunosuppresed, you want to be wiping down the carts, etc.

Ian is registered for preschool this fall. He already knows all that is on the academic agenda from the paperwork and information I got but the whole point is for him to grow socially at this stage. I am a bit nervous about the germ aspect and will be meeting with his teachers (there are two) in depth in the fall. I met them at registration and they seem like they will be awesome.

Ian is now in a booster chair and loving it. And no suprise as to the color he choose--orange. He wanted us to put in the booster when we bought it but because it was going to take some juggling for his sister, brett maneuvering the stuff, etc. his first ride in it was to church on Sunday.

The last visit to the transplant center (last week) was good. He met with the surgeon and got a glowing report (I stayed home with Ian's sister). Ian is in fact doing so well that we are cleared for a two month interval before needing to go back which is huge for our family. He still needs labs every other week which is very managable for us.

Ian is nicknamed stud muffin and to wrap up this post, here is a picture of our aptly name guy!

Update

Ian is doing very well all things considered post transplant. We are still having some trouble with bad dreams since his prograf level was increased. I keep pushing fluids on him and as the weather gets warmer here in Charleston I carry water with us wherever we go. Ian sweats a lot on top of needing extra water as a transplant kid. His special t scar is starting to look better espeically at the edges. I put mederma on it daily to help. We are hopeful that after his next visit to CHOA (next week) that he will be able to get on an every other month schedule for clinic visits. It would be huge!

Four Months Later....

Four months post transplant and Ian is doing well--very very well. Doctors are all pleased and so are we. We are down considerably in meds, clinic visits, and labs which are all good things. I am still very much into germ-x and recently stocked up with 6 bottles of the stuff as I continue to have one stationed in every room.

We went to the Transplant Night at the Braves and it was wonderful! So grateful for the Braves for doing something like htat for the transplant kids. There was dinner, a meet hte player, parade around the field and then the game. It was super cold so Ian and Brett (Livy and I had already left) made it through the 6th inning.

Ian is slowly starting to gain weight again which is good. I would be suprised for him not to the way he eats....blame it on the steroids. He is still struggling a bit with dreams b/c of the prograf but those have become more managable. His energy level is through the roof--running everywhere!

Our transplant coordinator wants Ian to possibly be a poster child for CHOA and is putting us in touch with the necessary folks. She thinks Ian is so cute (so do we!) and has a great smile(so do we!) and a wonderful personality (so do we!) So ham it up Ian cuz we want you on some CHOA PR materials!!!

Growing by Leaps and Bounds

Ian continues to grow stronger and have more engery (lots more) each day. We are slowly taking him out more and more as we have hit our three month mark. We went to the library for the first time this past week and he was thrilled. We checked out new books--we have lots of books but alas even I was growing weary of the "usuals". I did wipe all of the books down with lysol first.

We are working each day on strengthening his fine muscles in his hands and arms. Each day he practices writing an upper and lower case letter. Today was letter R. We also go over the sound each letter makes and things that start with that letter and he is grasping it very well. He continues to improve with the control of the pencil each day.

Labs last week were pretty good. He selected "this arm" and held it still for the lab tech. I took a picture of the bandaid that he wanted off and then didn't want off.

He can squirt each of the meds into his mouth by himself now and does it without squeaking and fussing. Compared to where we were even a month or three months ago, this is huge!

He is into Easter and hunting eggs which I hide for him 5 times a day--that is my personal limit. He is a joy to watch find them! We are thrilled by his progress and that he is indeed growing by leaps and bounds!

4 meds

The team is pleased with Ian's progress. We are at our three month anniversary. Clinic visit yesterday was good. Dr. Vos saw us first and was pleased with Ian's progress. A review of Ian's meds uncovered the fact that we were no longer supposed to be taking one of them. No harm to Ian except it happens to be the one that he hates so there was much weeping wailing and gnashing of teeth that could have been avoided. Somehow we missed that communication from the transplant team.

Ian is now on every other week labs and down to only four meds. It is likely that he will be down to three in the next two months and then slowly back off the remaining three over a long period of time. He has lot a bit of weight but nothing too concerning. Dr. Vos also commented on the muscles in his arms and hands that they had atrophied some but would come back/start to really develop. This is great as it will really help his handwriting and other motor skills and coordination. The visit with Dr. Pillan was good except he didn't give Ian the usual piece of gum and Ian piped up to remind him of that. And the visit with Dr. Mee with filled with Thomas banter. We were able to be on the road before the main rush hour. We stopped for an ice cream treat and....yes special chickens (aka chicken nuggets).

We head back in mid April as we are at monthly clinic visits at this point. The day before clinic is the Transplant Braves game where transplant kids get to go to a Braves game, etc. Ian and Brett are definitely going but Livy and I may need to make an early exit.

Ian is doing great and I am glad that we have only 4 meds to deal with now.