Clinic Visit

Ian had a great clinic visit last week. He has been having a few of his liver enzyme numbers creep up a bit so some other tests have been ordered. We are currently waiting for those results and they should be back any day.

I met with the school principal about Ian's medical needs. It was a very good meeting and I feel better about sending him off. I really appreciate the time that the principal took to meet with me. We'll meet his school teacher in about two weeks. I am excited about his first day of school. Right now we are role playing different things that he may encounter for school and his favorite so far has been the lunch sack. He is thrilled with opening it and finding what is inside. It has been a great teaching moment about nutrition for us.

We ordered a new ID band a something special to start the school year. He has a red and blue truck band, space themed band and he choose this time a......

football band. I guess all those Virginia Tech football games that Brett and I watch are making an impact.

I'm 5 today

Ian turned 5 today and was all smiles! He got a set of golf clubs (kid size) and he is practicing putting in our family room. Our little man is growing up so fast--where has the time gone?

Tubes

Ian had tubes put in his ears about 2 weeks ago. He is doing great with them and has even gone swimming a couple of times. He couldn't eat breakfast that morning so we woke him up around 11pm to give him some food and he chose the very healthy option of a hotdog. The only part of the procedure that was a bit hairy was when he was waking up from the anasthetic. They told him to come in PJs and comfy shoes so we complied. Here he is waiting to go back.

The new lab place that CHOA recommended continues to be great. I just have to remember to bring lab orders each time as standing orders aren't possible right now. I have a huge stack of them on my desk. Last time I left without htem and got down to the end of hte street before having to turn around and come back for them. We go for labs again this next week and I'll avoid Friday as that seemed to be much busier than Monday.

New Labs and Last Day of School

Ian has been busy this week. We went to our new lab location on Monday and it was wonderfully speedy. We were expecting lots of extra paperwork this time being new but nope, it was fairly simple. Ian was disappointed that he only got a cottonball and tape over his needle site instead of the usual bandaid. We celebrated by getting a donut afterwards.

He also had his year end preschool party on Tuesday which was inside due to the rain. This was Ian's first jump castle experience and he loved it. The blurry boy in front is him.


Today, Ian finished preschool and had his program. He did fabulously and I could hear him singing all the songs very nicely. He had several parts of the program. The paper he is holding is his certificate.

Next week is going to be busy too with tubes surgery.

Upstaged

So I don't know if Ian' felt upstaged by Livia's need to go to the ENT for consult about getting tubes in her ears (we are waiting on the fall if we need to for her) or what but we went yesterday to the ENT to talk about Ian's ear infections, etc. He has had an ear infection in both ears since about March. We've been on antibiotics even stepping up in strength and getting shots (partially because of the prograf making him immunosuppressed). For someone Ian's age, it is kind of odd to be having this problem so the ENT thinks the transplant is factoring in to some level. As of yesterday, he still has lots of fluid in his ears. Thankfully at present it is not infected but will be at the slightest hint of bacteria. He is also having some minor hearing loss with lower tones. We were very glad to hear that he could still swim, bathe, etc. with the tubes in.

We scheduled the surgery (hardly seems like surgery given everything else that Ian has conquered) for June 2nd. We'll have to go through the no eating bit again prior to. My mom is looking to come and be here to watch Livia while I take Ian for the procedure (should be about 2 hours only). Brett has a work conference that week so we are grateful that Grandma M is willing to come.

So Ian, no more upstaging!

Sharp

Ian has had a pretty fierce ear infection since about March. He has been off and on antibiotics since then and has increased in strength over that time. This last time we went in, it was antibiotic shots back to back days. We are also going to see an ENT. Part of the problem is that Ian is immunosuppressed so his body doesn't want to fight this infection.

The trauma with the shots is now number 3 on my list with:

1. PICC line dressing change
2. IV start
3. Antibiotic shots

The antibiotic is very thick and so it takes a long time to inject and it then burns after it is in. It was swell to have to hold Ian down for it both days. Here is the before

and the after
On other news with things that are sharp....we are switching where we get our routine labs drawn. MUSC has been slow to turn around results and are having some issues getting the EBV results/blood done how CHOA needs it. So CHOA found a new place that is

a) closer to our house so no City traffic to deal with
b) can test EBV directly
c) results can be retrieved by CHOA directly
d) no parking fees

It is a win win all around so we are switching. I just got word that Ian's prograf level is crazy so we'll be using this new lab sooner than we thought--next week.

Batter Up

Outside time with the children includes games of chase, slides, hoola hoop, swings, and baseball which Ian is very good at helping Livy with. He is such a great big brother.

And when we come inside, Ian knows to scrub up to see who can make the biggest bubbles to clean our hands and get rid of those pesky germs.