Second Liver Day

It's Ian's liver day today and we'll celebrate with cake tomorrow when Grandma and Grandpa (one set) can come. Ian is doing well as a 5 year old in Kindergarten. He likes reading, using his imagination and eating lots of snacks. This is him bundled up for school in the morning.

We've hit some important milestones in two years:

Labs only once a month

One med twice daily

Clinic every six months

Thank you to all who have helped us get to this point and especially the donor family who made this all possible.

The countdown

Ian is doing great. I purchased a new type of mederma for him that is purple in the tube and then rubs on clear which Ian thinks is pretty cool stuff. I think this may be the last tube we buy. He will always have the scar but I was hoping it would fade a lot more like his first surgery scar has.

At just under 5 1/2, Ian lost his first tooth on Thanksgiving day. He was visited by the tooth fairy and was most excited to find some money under his pillow the next morning. Suprisingly not too much drama with the tooth removal which was all Brett's department.

The countdown is on for Ian's second Liver Day (December 17th). We have so much to be grateful for these last two years and couldn't possibly name them all but please know that if you are reading this, you are a blessing to us.

Add to my list of things never to be without

So I'd like to add this

to my list of things to never be without as a transplant parent. It is called unisolve and it takes off adhesive painlessly. We used countless of these pads in the hosptial when Ian had his transplant because of all the tape on him from IV's and other tubes. The staff gave us lots when we were discharged and I have slowly been working through our supply (treating them like gold) getting off the tape goo from labs. I just broke down and used the last one this past time for labs. Ian came home with a different type of tape (I call it paper tape) and it is awful stuff to get off. I managed to get it off without an adhesive pad using water and an ice cube but then for days (about 4) goo was left on his arm attracting all sorts of fuzz build up. Which is when I decided to use the last pad and hope that the lab place would let us bring in our own bandaids....which brings me to the some great news that.....

Ian is now on an every month schedule for labs! This is great. We haven't been this far stretched for labs since pre-transplant. We are greatly excited to meet this milestone. So even though I used my last unisolve pad, hopefully I won't be needing them as often any how.

Clinic Visit News

Ian had a fabulous clinic visit complete with getting his flu shot. (This is an extra bonus for me as I won't have to take him and wait in the ped's office here for an hour occupying both kiddos!)

He is growing and doing well on all accounts. The staff I think are all smitten by him but who wouldn't be right? He managed to get a special Thomas the Train engine from one of the doctors there. We are touched she remembers Ian so well to know that he adores Thomas.

The big news is that we are cleared for 6 months before needing to head back for clinic visit. This is exciting stuff! He would have been cleared for a year but because the doctors just changed his prograf level and are still keeping an eye on his EBV (viral that is still showing up in low level of his labs) so the team feels safer at having him come back in 6 months. Again, I am thrilled.

And for a bit of history, the end of this month (October 2005) five years ago marks our first ever visit with the CHOA team to get Ian evaluated and listed for transplant.

Grounded

Ian and Brett were going to fly today to his clinic appointment but if you can believe it there are NO RENTAL CARS available at the ATL airport for today or tomorrow. So they are now driving instead of flying and I am yet again stocking the DVD wallet with lots of movies for the drive. Thankfully I checked a new Thomas the Train out from the library and have a few other suprises for Ian on the journey. I am hopeful this clinic will be a good visit and our next one won't be four at least 4 months but am really wanting it to be 6 months. I'll post an update on his clinic visit after the return journey.

Great Catch at Camp

This past weekend Ian had the opportunity to go to Camp Second Chance which is set up just for transplant kids and their families. It is through CHOA and located in Rutledge, GA at Twin Lakes. The theme this year was Under the Big Top with all sorts of circus/carnival type events. Just Ian and Brett went this year as our first experience but based on the rave reviews they gave it, I think our whole family will go next year.

Ian had great time doing arts and crafts, learning some drumming skills and participating in the carnival where the jump castle was a big hit. But the biggest highlight and thing that Ian wanted to do while at camp was FISH!!! He chose to fish over paddle boats, swimming, rock wall, etc. It was worth it as he caught a 2lb catchfish on his first cast.

We are so grateful to the many people who make experiences like Camp Second Chance possible and hope that we can pay it forward one day.

School Days

Ian is doing well in school thus far. He is enjoying the computer center, science center and rice table. He is suprisingly only one of two kids (by his account) that have lunchboxes and don't purchase lunch. When I asked him if he wanted to purchase, he emphatically said no. He enjoys riding the bus, sweat box that it is and all. Here he is at his desk in school--he is put on the end to have less kids around him and touching his "spot". I LOVE that his teacher thought of that!

He has already missed one day for a cold and there has already been a case of strep in his classroom so we are being vigilant.

He'll have labs again this Monday which means he goes in late. His next clinic visit is in October and we are hopeful that we won't have to go back for six months. His liver numbers are holding solid even with the weaning off of the prednisone so that is good.

I'm a Kindergartener

Ian started Kindergarten today and had a great day. His teacher, Mrs. Slusser, is aware of Ian's medical needs and seems like she will be proactive about things. She has dealt with some servere allergy kids previously and so has some background about wiping things down, precautions, etc.

Ian will be dropped off in the morning because of his prograf medication. His bus would come to get him at 6:42AM which is crazy! His prograf time is 8am so to keep it as close to that time as possible (without having it given at school which is not our first choice) we're driving him in and squirting the med in his mouth has he gets out of the car.

Ian just had labs yesterday but will be missing school for labs, clinic, illness (his own or classmates) etc. He can only miss 10 days of school even with an excuse so we are working with school administrators to make sure that Ian isn't penalized for his liver transplant.

He liked the different centers in the class room giving high kudos for the computer center, rice table and reading area (although he hasn't found a Thomas the Train book yet). I look forward to good things this school year and know that Ian will be a great Kindergarten Boy!

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.

Fishing

Ian went to Kindergarten Open House night last night. We had great fun with the fish theme:

Making patterns out of goldfish crackers

Cutting playdough fish

Doing fish puzzles

Dry Erase boards

Songs about fish

Painting fish

And Ian's favorite....fishing for letter sounds!

Trend

So anytime we visit or travel somewhere, Ian comes home sick. My theory is b/c he is around "non-family germs" and it just hits him (and naturally his sister too!) He spiked a fever at my parents home this past week and now has an awful cough. Our pediatrician had no open spots this afternoon so tomorrow, we have an appointment. I have used all my creative ways to occupy children in a doctors office of:

1. Bribe treats (food is no longer allowed at this office--GROWL!)
2. Bubbles
3. Balloons
4. Books
5. Magna doodles
6. Crayons on the exam table paper
7. Inflatible ball to kick in the room
8. Toys

Please, if you have other ideas, pass them my way!!!!

Ball Game

Ian had the opportunity to go to "A Night at the Braves" this year with Brett (Livy and I stayed home as she doesn't do so great with the trip). This event is for transplant kids and their families to go and do something "normal" like see a baseball game thanks to the philanthropy of the The Braves. Ian had a great time eating a hotdog (yes he ate the whole footlong hotdog by himself!)

cotton candy

and walking around the stadium.

And because we like to try to be as efficient as possible, we piggybacked a clinic visit at CHOA on that day too. We found out that MUSC (our hospital here in SC) is not sending the EBV blood work to CHOA as they are supposed to and that means we'll be making a few phone calls/visits with the hospital administrators to figure out what needs to happen to make that happen. Brett and I played paper, rock, scissors on who got to deal with that one and I am thrilled to say that I am not it for once! :)

Registered

Ian is registered for Kindergarten! The ladies at the office got huge eyes when looking over his paperwork and saw that he had a liver transplant which of course brought on all sorts of new questions. There is an open house later this month and we'll be meeting with some school administrators then to talk about Ian's medical history, etc. School is just a few months away starting on August 17th.....can't belive my baby will be going!

Sunshine

Ian's prograf makes him pretty sensitive to the sun....in almost every picture we have of him outside he is squinting, covering his eyes, etc. We are looking at getting him a pair of nice sunglasses to help with this issue as the cheapie dollar store ones aren't cutting it.

We still had some fun outside and Ian is getting better at peddling his trike!

Kindergarten Registration

Kindergarten Registration is fast approaching....next week in fact. I'm trying to gather all the necessary documents to take with us and just wrote a letter to our transplant team asking them to write a letter back with all the following stuff to help us get through the registration process.

1. Information as to why Ian has not had all of his vaccinations.
2. Information that Ian will be on daily medication.
3. A statement regarding necessity of school absences for Ian to have for labs, clinic visits, etc.
4. Any information the transplant team typically recommends school officals be aware of with a transplant patient.

We are now facing a new round of things like....
1. Does the school have a nurse?
2. What time does the school day start b/c this will in turn affect Ian's prograf time.
3. What do we do if Ian is out for long periods of time?

I am thrilled at the thought of Kindergarten and some what scared at all these new hurdles. Expect pictures of the actual registration process next week.

Lions, Ladybugs, and Penguins

Each day I work with Ian doing occupational therapy things as well as school. Today we were drawing pictures of animals. I draw and show him how to do it while he follows my instructions. I am NOT an artist so drawing anything is challenging for me....

Here is our lion

our penguin

and our spotted beetle (Ian's is only 2 years old apparently)

Our frog didn't make it to the picture reel. I'm going to have to work figuring out how to do it. Later, when asking him about his snack at preschool Ian described this to me.

"We had frosted flakes and we ate it like dogs. No spoons or milk. We also had cookies. "

"What type of cookies?"

"They looked like the hair of the lion."

And I knew that I had reached a level of artistry that I could be proud of because I knew exactly the type of cookie.....they are butter cookies that have a hole in them. I confirmed this with Ian who then told me that he used them a sunglasses :) I wish I had a picture of that craftiness!

Tic Tacs

We are working with Ian on being able to swallow a pill so he can take his prograf that way instead of via a compound. It will not only be cheaper but allow us to get the medication here in SC, and to keep some in our 72 hour kit, etc.

The transplant team encouraged us to try using Tic Tacs for Ian to practice with as his prograf pill will very close to that size. He is doing exceptionally and I think that maybe by the summer we will make the switch. He can swallow it usually on the first try but we are waiting until he can do that every time without any hesitation. Ian thinks it is great fun learning this--all because of the Tic Tacs. I got some that have both red and yellow in the package and he insists on swallowing one of each color at lunch and dinner. Bottom's up!

Gas Station

Today was a lab day and I had to schlep both kids as Brett had a work meeting. We were in traffic for one hour because, bless them SC folks can't seem to really drive that well in rain. There were multiple accidents. Ian has to have labs before he has prograf as they are measuring the level in his body 12 hours after his last dose. We have an 8am/8pm prograf time. Today, we had a 13 hour trough time instead in the 12 hours thanks to the traffic. Argh!

Ian climbed up and into the chair by himself and was a champ. Not one tear.

The folks at MUSC were even ok with the new orders to send the EBV (a viral test) out to CHOA so that was awesome. I was prepared for much weeping and wailing and gnashing of teeth over that one.

As customary, we stopped to get a drink and special treat for Ian after labs because he did well. While at the gas station, Ian starts the potty dance so we go and use the facilities at the station. No sooner had a turned to lock the door do I look back and see Ian touching the toilet lid to raise it! AGGHHHH! We have talked endlessly about germs and public potty spots being very very gooey and gross with germs but alas! We used lots of germ-x because of course there was no soap in said gas station. Of course!

Weaning off Prednisone

We got a call on Friday from CHOA that they are going to start weaning him off the prednisone. This is awesome. He is far enough out from his transplant and doing well enough that they are cutting him back to a M, W, F schedule. We are excited but also very cautious as this may trigger some rejection so he will keep his every other week lab schedule. Once he is off the prednisone, he will be on just one medicine, prograf, which he will be on for life. We are going to try to start teaching him to swallow a pill (about hte size of a tic tac) in yogurt or applesauce. We are hopeful it will be a quick learning curve so we don't have to continue to get the prograf compounded.

The call came the same day as our snow here in Charleston so in honor, I'll post pictures of Ian enjoying some playtime in the rare cold weather event here in the south. I am so glad that we were not admitted to CHOA last we so that Ian can be outside and enjoy this.

Back from CHOA

Ian's EBV numbers are normal!!! That is the biggest news from our visit to CHOA where they run labs differently (and a bit more accurately) than here in SC. So we were not admitted to CHOA, no rejection, etc. etc. We feel exceptionally blessed on all accounts. Ian was great at CHOA. We met the new transplant coordinators and Ian quickly selected a new favorite as she gave him ice cream--chocolate nonetheless! It was a longer visit than normal because they were busy and all the doctors that needed to see him but he was so patient. We had a bit of some hoops to jump through to get his labs but even for labs he was good. At the end he wanted his name braclet off in the hospital and didn't even want to wait until we were in the car. Thanks to all who were praying for us! We appreciate it so much!

Energy

We will head to Atlanta on Sunday and be ready for labs first thing on Monday so the results can be sent out in the 8:30 shipment. The labs take two days to turn around so we are going to stay put in Atlanta with my sister and wait until clinic on Wednesday for a chat with the transplant team and the results. That way if the results come back positive, we will already be there and not have to turn around and make the drive again in such a short time period.

All things point the lab tests, etc. being done at CHOA as a precaution. His EBV history hasn't been great so the transplant team is being detailed in their approach which we appreciate. We are optimistic.

Here are a few pictures of Ian's IV with his puppy (it is a sticker the nurses gave him) sleeping in his IV house. The puppy was named Fido. His IV pole was named George and we would talk to George when we would go out, etc. It was great. And Livy loved to try to climb on George! I did learn that for the next IV, we need to be sure to get it in his LEFT hand. I even told the nurse he was right handed but I think in all the hub bub to get it in that was lost. Ian had to have help eating, brushing teeth, going to the bathroom, etc. It was great to get that out for lots of reasons. And speaking of, his nurse let him to take out his IV for the most part. He thought that was pretty cool.

He is doing well clinically so he is excited to go to the Primary activity tomorrow. I think mostly because he can wear his pj's to it. Ian has had more energy today than all of hte last week and all I can say is "please share some of that with your tired mom!"

Home

we are back home today discharged around noon. Ian fell asleep tonight so speedy in his own bed. We celebrated Brett's bday in style--at home sitting at a table to eat rather than hunched in a tiny hospital room eating take out food.

Ian is doing well. we will go to Atlanta (CHOA) for labs and a clinic visit with the transplant team this coming week.

I'll post pictures, etc. later. Thank you all for praying for us and the love and concern.

Another Day

So we were hopefully going home today but no deal. Our doctor miscalcuated the time that we needed to stay.....so we (meaning Brett and Ian) are there again tonight. We should, dare I say it, be home tomorrow.

On that news, we will be headed to Atlanta this Sunday. Thankfully we won't be going there tomorrow (that was a very real possibility until about 8:30pm tonight). We will at least have the weekend at home to recoup and my Mom (thank you so much Mom) will be joining up with me to make the drive and stay in Atlanta.

A huge thanks to my friend who was so kind to watch Livia all day for me so that I could be with Ian and Brett could attend to some work related things.

We will be in Atlanta from Sunday to at least Wednesday and possibly longer based on test results. The CHOA transplant team wants to evaulate Ian and run some specialized tests that are best conducted there.

I have some pictures of Ian in the MUSC play area from today but am exhausted so I'll post them in a future update. He loved the painting, thomas the train table, and his new love.....the air hockey table!

Hospital Stay

Ian has been spiking fevers for the last few days and last night he spiked a fever of 102.6 which anything over 102 our transplant team has told us to go to the ER. Brett and Ian headed to the local ER. The battery of tests began. The strep tests, and flu tests came back negative as did his chest x-ray so the doc there transferred him to MUSC the main hospital here in the area.

The doc at MUSC wants to keep him for at least 48 hour "rule out" period where they rule out certain things. CHOA team has been consulted and ordered an antibiotic that had to be given via an IV. The IV start wasn't pretty in terms of Ian's reaction (there was some major trauma with the three IV tries from the ER the night before). I was there solo with him for that....I guess that is "fair" as Brett was solo for the shots and IV tries the night before. Dealing with that level of trauma with your child is just torture of the worst type.

Ian is doing well clinically. His fever has since subsided as of early this AM and liver labs and ultrasound are good. He had labs drawn again tonight for viral screenings and we should have results tomorrow and are hoping they are of course negative.

We are all doing OK just tired from the lack of sleep and anxiousness of the ordeal. Thank you so very much to all who are thinking of us and praying for us.

Thomas PJs

We're still battling a bit on the dreams. Things are better but not 100% yet. Ian will have labs again this Friday and I am hoping that he doesn't have another prograf change as that would add to the dream issue. He is in his special Thomas PJs to help.

He spiked a fever on Saturday night so we've been watching him closely. He didn't go to church today and actually napped which is rare for him. I am hopeful his EBV is not up.

Prograf Dreams

Ian's prograf level changed (decreased this time) and with that has come the round of prograf dreams...bad dreams to be specific. I have spent a lot of time in his tiny bed trying to console him. It usually takes about 2 weeks for his body to adjust to the change so we should only have a few more days to go....hopefully. In the mean time, we are trying to deal with this side effect. I chase the bad dreams out each night and told them that they go to bad dreamland which brought on a whole round of questions I never anticipated. We are also going to make a dream catcher too. Any other ideas to help us with the dreams...send them on.

Museum

We went to the Museum of Charleston recently and there was a gigantic polar bear there (Ian confirmed that it was not real many times). In honor of Ian's actigall from pre liver transplant here is a picture of Ian and Livy with the polar bear that is again, not real :)

EVB Levels

So we are hoping that today's labs show a decline in the EVB levels... that is Epstein Barr Virus which causes mono and the like. Ian is routinely tested for it as this virus can be pretty nasty in someone who is immunosuppressed. His levels have been running high so the transplant team has taken him off his cellcept to help curb this and we are watching things pretty closely.

As for happier things, Ian will be in the next class for Primary, CTR 5 and he is pretty excited about that. He also restarts preschool tomorrow. He also go to open more presents last week for Christmas when Grandma and Grandpa came which was definitely a highlight of the Holiday season for him.