Thursday, February 26, 2009

Giddy Over Small Victories

Livy has acid reflux it seems so at her 4 month well baby appointment on Tuesday the doctor prescribed Zantac for her. He actually prescribed both the generic and non-generic that tastes a lot better, etc. I opted for the generic as it was $30 cheaper. We are on dose number four and it is going OK in terms of getting her to take it--I've tried mixing it in breastmilk, pedialyte and apple juice and so far the pedialyte is the winner. She coughs, gags, and sputters it but manage to get some down. The doctor told us that some babies sleep through the night after they start getting it and I thought yeah right but lo and behold......the first night she slept from 10 to 4 without waking! I woke up a million times it seemed to check on her so it wasn't very restful for me. Last night was back to the usual but I am hoping that the med helps to calm her tummy to get into a pattern for sleep. I am excited at the prospect of a better sleeping Livy.

Ian is back from clinic without his PICC line! Very exciting as a big time bath is in his future for tonight! I am so excited and I think he is going to be once he sees that he can splash and play again. We head back to clinic mid March and I will probably be going solo to give Brett the break. They wanted us at the end of March but because there is a "night with the braves" on the 14th of april we are wanting to align our next clinic with that baseball game so Ian can see it.

I've started our food storage for 3 months and think we have a solid month at this point. I felt giddy scoring poptarts--name brand poptarts mind you--for $.20 a box at publix with BOGO and coupons.

I think that it is truly a mommy moment to be giddy over these small victories :)

Monday, February 23, 2009

Food Storage Committment

So last Monday was my birthday and I turned 31.....that wasn't nearly as hard as turning 30. I wanted a vanilla malt from Sonic and got my wish :) It was so good and I must have talked about it so much that Ian asked Brett to get me another one on Saturday when Brett was solo with both kids while I was at a stake relief society meeting. Brett obliged (I think he needed to get out and do something).

So at this stake RS meeting I heard again about counsel to have a 3 month food storage. I went home and talked to Brett and we are getting on board with it. For a long time we thought we were doing really well....ha ha ha! When we actually reassessed our pantry (read lack thereof) and it was apparent that we were fooling ourselves. We had already set a goal to work on food storage for the year and this reassessment just made it a bit more offical. I've spent about 2 hours already strategizing where we are going to put the food (we have to move our long term storage of big #10 cans from the garage inside as I found out that was a no no) and clipping coupons to align with BOGO sales at Publix and Bi-Lo this week. So right now, I am in the thick of planning out what we are going keep in our storage, etc. I've made menus, tallied up the amounts, and projected costs, etc. and am hopeful that we can have a good chunk done by the end of June....I guess it could be faster depending on how many BOGO sales I can hit :)
Brett and Ian are going to clinic leaving late tomorrow (Livia has a 4 month well baby appointment followed by a consult for Ian as we are changing pediatricans here). Livia and I will be staying here to let her get some addition "down time" from her carseat....except that we are going to be running mass errands (like to Publix) as I can get out and do some things as I don't need to worry about keeping Ian indoors.

Thursday, February 19, 2009

Day to Day

These last few days I have been particularly grateful for our Wii from Santa. I've been staying in with Ian to avoid germs and what not and the Wii has helped to pass the time and has been an excellent med motivator. Ian is a pro at bowling (his high is a 206 which is way better than mine). He also enjoys the golf game but tennis is not his strong suit as he can't quite get the timing for the swing. Livia just sits and watches us or I hold her and play....kind of tricky at some points.

We did venture out yesterday to Target (our first outing since we have been home where he has been out of the car). I made Ian stay in the cart and where gloves again and use mass amounts of germ-x when we got home. I didn't make him wear a mask which he was grateful for. I asked him which store he liked better between Wal-Mart (aka the happy face sticker store) and target and he replied that he liked them both. Wal-Mart b/c they have stickers and Thomas b/c they have Thomas things. Ian is clueless that Wal-Mart also has toys as I have never shown them to is my strategy in keeping my grocery shopping trips to a minimal amount of time and productive. When he figures this out, I'll have to grocery shop at night or something.

I took a picture of Livia in one of Ian's old outfits today and am amazed at how similiar they are and yet how different. She is quite the mamma's girl. Next week is her 4 month well baby appointment at a new pediatrican and I am anxious to hear how she is doing and get her weight checked--she is chubby and I hope it is not too chubby. She also spits up a lot and want to get some insight on that.

Ian got his PICC line dressing changed for hopefully the last time today at MUSC. Next week at clinic in Atlanta we will have the line taken out as he is down to once a week lab draws. The stick of hte needle compared to the band-aid changed were weighed against each other and the stick of hte needle one hands down! He calls the blue microbial patch that has a hole in the middle his "blue donut" which I thought was very clever.

Sunday, February 15, 2009

Valentines Day

At our house, Valentines Day is special but not to the point where flowers, chocolates, etc. are purchased. The reason being....Brett's birthday is the 4th of February and mine is the 16th of February so with all the birthday celebrations we agreed to just do a simple approach. This year that was me letting Brett sleep in and me getting a nap and some time out of the house. (I've been staying put with Ian's transplant and am kind of forgetting what a store is....)

Brett's sleep in time was cut short as Ian vomited. That is a "code red" situation in our house so the troops were mobilized. We did the round of "tests" at home to see if he was ok. These tests include poking his tummy, taking temperature, the cap test, etc. He was fine so we monitored him and gave him saltines which he was able to handle. No other incidents came about so we didn't have to call the transplant team.

Later in the day after the stars aligned, a horseshoe was put above our door, a rabbits foot was on a key ring, a penny was picked up (you get the idea) EVERYONE got a nap and AT THE SAME TIME!!!! Amazing stuff!

Ian and Brett finally got guitar hero set up. This was my christmas present to brett that I stood in line on black friday at target, ran through the store and thwarted the masses to come up with. (Read...I love my hubby). Brett was brillant and for Christmas he gave Ian a toy guitar which Ian loved to play along with Brett. It was the cutest thing and so incredibly smart of Brett to have the foresight to think of.

Friday, February 13, 2009

Not Friday the 13th here....

Today was an over all good day as was yesterday. The house got cleaned and laundry done. The kids and I even spent some time outside yesterday watching geese at a near by pond. Ian was facinated. We can't get close to the turtles as they dive into the water when they hear us coming.

Ian has offically entered the jealous phase of big brotherhood. We have been waiting for this and I am finally ready to admit that it is upon us. He isn't doing anything naughty to Livia; just trying to act more like a baby when he sees us doing baby things with her--rocking, etc. He must be a Dr. Jekyll/Mr. Hyde personality as he is also in the phase of "I do it myself"...flushing his line, pushing meds in, taking off clothes without any assistance. He is also a bit on the sassy side so I have started to give him 3 Wii warnings a day (he thought I was saying Wii mornings) and if he uses all three, no Wii time at night with, sadly he lost his last one at dinner....despite some blind eye turning on our part it was too much to just "let it go". Enter weeping, wailing and gnashing of teeth.

Livia is not a good napper; she is an ok sleeper just a rotten napper. Today was a testament to that statement. I don't know what I am doing differently/wrong from Ian other than the fact that she is her own person and is reminding me of that most definitely.

I am slowly getting my task list whittled down. Left on the list are updating my 72 hour kit, repacking our hospital bag for the car (we will always have one of these I think), get caught up on scrapbooking stuff, and a bunch of other odd little things.

We heard from the transplant team today late in the day (almost 5pm) and found two great pieces of news. 1) Ian is now on a weekly lab schedule and 2) We don't have to go to clinic until Feb 25th and hopefully it will be a month out after that point. HOOORAY!!!! Who said anything about today being Friday the 13th?

Tuesday, February 10, 2009

8 weeks ago today....

8 weeks ago today, we got the call that a liver was a match for Ian. Amazing that it has been 8 weeks as time has gone slowly for some parts and flown by for others. We have truly been so blessed with Ian's transplant experience. Here is a before, "during" and after picture.

Ian is doing well over all. He has had his first round of the sniffles and fared ok. I have a bottle of germ-x in every room at this point I think and he is now to the point where he just uses it without much prompting. We are installing a wall mounted germ-x dispenser unit in our garage by the main door this weekend. I keep sani-wipes in the car and germ-x in the car and on my key ring too. We've eaten out twice (in a resturant) and both times it was quite the production to wipe down Ian's table area, chair, etc. I'm sure the waitresses think I'm a nut case--and they would be right to some degree.

I had to flush Ian's PICC line twice today. He did a lot of running and jumping outside today and then tonight with the Wii--so it needed it. He likes to scrub his line at the end with the alcohol pad. I am anxious to get it out so he can get a good soaking in the tub (It can't get wet and right now I'm using saran wrap and holding it to avoid getting wet).

Ian continues to have some pretty intense dreams at night. We are wondering if it is a side effect of his meds and plan to talk to the doctors about it at next clinic. We don't have to go tomorrow and may be cleared for another week if Ian's labs continue to show good stability. He took meds tonight in less than a minute I think as the Wii was "calling" to him. The Wii is proving to be a great investment for him in terms of meds motivator, etc. He has to have his PICC line dressing changed on Thursday and because it will be at MUSC Brett will be there to comfort him through it.

In honor of the 8 week milestone, I'll end with a numbers recap of the transplant...

*1 special boy
*2 loving parents
*3 year transplant wait
*4 people in our immediate family
*5 hour drive to CHOA completed in 4 hours
*6 meds to take each night
*7 days on the transplant unit floor
*8 hours in transplant surgery
*9 key people in the transplant team (Heffron, Romero, Pillan, dePaulo, Vos, Rochelle, Ginger, Denia, and Pat)
*10 new Thomas engines accquired b/c of transplant (daisy, toad, troublesome truck, fireworks car, chicken car, egg car, octopus car, lobster car, disel 10, and bertie)
*11 times into CHOA for lab draws since discharge
*12 days in PICU
*19 days total in hospital
*23 days in Ronald McDonald House
*37 parking passes used
*40 staples for incision
*63 trips from CHOA to Mason Guest House
*238 pictures taken during transplant experience
*3,637 miles driven during transplant experience
*1,000,000+ reasons to be grateful

8 weeks ago.....

So 8 weeks ago my life and the lives of my family changed forever as it marks the anniversary of Ian's transplant call. Just thinking about where we were and how far we have come is truly amazing and I am so grateful to be where we are at this point. I know I have not made it here alone as there have been countless people out there praying for us, supporting us, and loving us through this. Thank you all.

We got a call this AM from our transplant coordinator letting us know we did not need to come into clinic tomorrow. This is huge as we all needed a break from the car (and carseats). It also means that Ian's labs are looking good. He is still on a twice a week schedule getting labs done at MUSC. Brett takes him in and then we meet at a gas station to do a pick up/car swap.

Yesterday was Livia's month day--the 9th. She is 4 months old. I don't know how much she weighs but I guess it is over 15 pounds at this point. She is in the 3-6 months size clothes and size 2 diapers. She is pretty close to rolling over. She was blowing raspberries yesterday. Grasping for and then "tasting" toys are her activies du jour and she enjoys anything with music but particularly when I play the piano with Ian at my side. The pictures are of Livy on her month day.

We went outside today to do chalk and bubbles--big jumbo bubbles thanks to Aunt Bean. Ian loved it but was a bit frustrated that he couldn't catch them more readily due to the wind. Livia was mezmorized by the bubbles. I am working on lowercase letters with Ian in our "chalktime" as that is one of his/my goals for this year is to ID all lowercase without hte help of the uppercase. He is doing well. I want him to have 5 sight words, write his name a little neater and count from 15-20 (he has 1-15 mastered) as well....lofty I know but I am hopeful. I am checking preschools here for him and the two I wanted are both filled already....time for the waiting list.

Sunday, February 8, 2009

Church, Wii and Warm weather

I was able to go to church today while Brett watched the kids. We'll be doing the swap out for a while as Ian shouldn't be at church for about another month or so....just too many germs and too many people would want to see/touch him that it is not recommended. It was wonderful to go and needed the spiritual boost today more than I realized. It was great to get out of the house in general. We're staying put except for labs to avoid the germs, etc.

Our family is enjoying the Wii we got for Christmas. Playing each night after dinner has become a bit of a routine. Brett and I are battling it out for the lead in bowling but baseball remains elusive to me. I am pretty bad at it needless to say. I did much better at golf. We'll get the Wii fit hooked up soon.

I finally have the house a bit back to normal--all the Christmas stuff is down and put away, etc. at this point. I have Ian's meds in a cabinet and they take up quite a bit of room but at least they are off the counter at this point. I am also checking into preschool options for him in the fall and found out that he would be able to do tball in the spring if he wants too. (contact sports are out and soccer is iffy at best.)

Livia is almost rolling over. She is also grabbing toys and shaking them, etc. I wonder by the amount of drool and chewing action if she may be starting to think about teething. Her month day is tomorrow :)

Slowly I feel that life is beginning to slow down a bit from Ian's transplant. Hopefully we won't need to go to clinic in Atlanta this week to get some down time here. We may go for a walk in a bit as the weather here is delightful--around 70 degrees!

Thursday, February 5, 2009

Clinic on Feb 4

So Ian, Livia and I made the drive back to Atlanta on Tuesday afternoon. Our clinic appointment time was 1pm but we had to have labs done around 8am so we opted to leave the night before to get there rather than in the middle of the night to get there. The drive there was pretty good. We stayed with my sister in Newnan.

Labs were fairly uneventful. Clinic was quick this time. We were only seen by Dr. Heffron who said we needed to go back to a M, W, F lab schedule b/c Ian's prograf level was too low. His dose has been increased by half. They want to make sure his prograf level is ok at the 12 hour trough time. If lab numbers are good F and M then we won't need to go back to clinic on Wednesday which is great. If we do need to go back, we are flying b/c I don't think that livy is going to sit in her chair for that long again for a while. It was bad needless to say coming home. Being solo with both kids also didn't help. Brett has burned all his vacation time so it will be me for a while till he can earn a day again.

Livia is starting to squeak so there will be more on the next post......

Sunday, February 1, 2009

Christmas at Home Finally

The transplant team discharged us to go home for a week late last Wednesday. We made the drive from Atlanta to Charleston and finally celebrated Christmas here today (Sunday Feb 1st) which was great. Not quite the magic that comes from Christmas on Dec 25th but it was still good. We didn't have a tree (well a small table top tree with no lights or decorations) and the other decorations are coming down tomorrow. Santa brought Ian a Cranky Crane which was the hit of the day. He is currently playing with Cranky and a few more engines he got. I had only one present to unwrap as Brett is a bit of a last minute shopper and well lets say that procrastination this time got the better of him due to other way way way more important issues. Moral--if waiting a liver transplant shop early. :) My present though was redeeming as it was a wonderful multi-picture frame shelf combo with pictures of the kids in it that Brett had ordered without me knowing it. Good job honey!

Ian is doing well overall. I am currently sick and am wearing a mask as much as possible to keep him free from these germs so that has been a bit tricky. Getting labs done here at MUSC Children's was an ordeal on Thursday but we survived it. Labs are at MUSC again on Monday. We have to bring in our own supplies for them to draw from Ian's PICC line which is apparently a style they don't use at MUSC. Labs also didn't get sent same day which is key for managign Ian's prograf level. If MUSC can't get things together to turn labs around same day to the team in ATL, we'll have to go back and stay in ATL until we have labs weekly. It took over 4 hours start to finish getting labs and another 2+ on the phone chasing down the people we needed to get labs sent and it still didn't happen. Yeah....Brett and I were frustrated. I'm just glad we are proactive parents as I hate to think what would have happened otherwise.

We have to be back to clinic this coming Wednesday and may need to do that every week for a while. It is worth it to be home in the meantime though. I'll be driving solo with the kids this time as Brett has burned all of his time off for a while.

I am hoping to get more pictures posted on facebook later today or tomorrow. When I got home, I had a huge stack of stuff to dig through and sort and put away, etc. It was fierce. It was almost as bad as unpacking from a move. I still have tons to do but am cautioned against trying to do it all in a day. My to do list is mounting though and that makes me anxious. My mom was here until yesterday and that was a big help to at least get the suitcases unpacked. I've had things packed up for three years and now am trying to find a spot for everything it is more daunting than you would think.

We'll be setting up a new train table scene later today and that should actually be some fun family time! More later this week.....