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.

New Lab Schedule

Labs this week were fairly good. A few tears but overall he is really a champ! We got a call today that his lab schedule has changed to every other week which is great news! His prograf level was also adjusted down. Very exciting progress.

Ian keeps running into things....like the chair or the wall. Part of it is the lack of attention paid to where he is going but part is he has a new center of balance with a smaller abdomen. He has yet another scrape on his face which called for ointment--"not special t ointment" aka mederma but just neosporin ointment.

He continues to have some pain going to the bathroom and requests me to take his temperature everytime afterward just to be sure. We bought a new thermometer that beeps when it is done to help expedite me knowing when it is done.

Fluids remain key for Ian and I am pushing them on him big time. I'll say things like "take a nice long drink of water before we play wii fit" or something. Speaking of Wii Fit, Ian is very much into it now, well the balance games part of it. The penguin or marble roll are his favorites and he does fairly well. I worry about his fluids with it getting warmer here in SC. I take a snack and water cup everywhere we go which isn't out that often but April is coming soon and I'm excited to be out more.

We travel to a clinic visit on Wednesday so there should be more to post after that point.

A Raisin to Boot!

So we had a visit to the ER...nothing for his liver mind you but the classic childhood curiosity of sticking things in and up noses, and ears. All of hte sudden Ian has figured out his body has these neat little "hiding" places.

On Saturday night Ian shoved a raisin up his nose. We have asked him why and I don't know if we were expecting a full confession or for Ian to tell us this elaborate hypothesis about a scientific experiment he was conducting or what but we got "I don't know" which we should have guessed.

After all attempts to remove said raisin from his nose (blowing, blub syringe, etc.) we called his pediatrician who advised us to go to the ER as it was 7pm on a Saturday. After a snotty experience for Brett (I'll leave out the details) and some trauma for Ian, the raisin came out and we are the proud owners of a package of tissues that cost some unearthly amount for the ER visit. We can also tell anyone who needs to know how to get something out of ones nose out for a much smaller fee than the ER :) The docs sent us home with our souvenir of the experience complete in a sealed specimen jar.

Lab Draw

Ian had to get labs done today (we're on the weekly schedule at this point). He did fairly well overall. A bit of squeaking and fussing but nothing like it was when we had to get his PICC line dressing changed. Later back at the house, he wanted his bandaid to stay on even though it was clearly falling off so he basically took it off himself. Ian is becoming addicted to root beer as he gets one each time after labs at the Kangaroo gas station.

Ian fell going up the stairs tonight so he has a bit of a scrape/bruise on his face. He also got the wind knocked out of him a bit. I think he was more scared than anything.

He still has the "snuffies" although we are done using cold meds at this point. He has mastered hte concept of blowing into a tissue (sorry if that is too much info). I "threatened" him with using a bulb syringe like I have to with Livia if he didn't do better with the tissue. He improved immediately.

I found one of his asprin pills by the couch this afternoon.....indeed it would be one of teh very same chewable pills Ian is supposed to take each morning. We had a talk about how if he drops it or it gets lost he needs to tell me so we can find it (Livia is going to start crawling before too long and he needs to take it).

Today in our "preschool time" I worked with Ian using scissors. He did pretty well and likes to just cut big lines right now although we did some shapes together. He is mastering right and left and can tell you all the planets in order. I have found that teaching Ian through music is huge. He is still struggling with writing in general and it may be related to some fine motor skill development from the lack of vitamin absorption from pre-transplant days. I'm going to follow up with the team next clinic visit.

We'll have labs next Wednesday and I'll plan for that to be my next post unless something else comes up.