Sunday, March 24, 2013

2nd Heart Transplant Anniversary

Lillian 2 years to the hour after being in surgery for her transplant prep.
Today is a somewhat emotional day for us today as it is Lillian's 2nd anniversary for getting her heart transplant. We are always excited today to celebrate the life she was given, but our thoughts always return to our donor family and their gift today. We are thankful as Lillian has done extremely well post transplant, with only a few minor issues that are still bothering us. For the most part she is a happy little girl who loves playing with her sisters.

Of the issues still affecting us, the largest would be getting med levels right. Despite our best efforts, Lillian's Cyclosporine levels are continually low, and stay that way no matter how much we raise her dose. This is probably due in part to the... cleansing side effects of some of her other medicine, which is a two part battle we are always fighting. Thankfully, it is about as small of an issue that a transplant patient can have. We also find that her extremities are extremely cold to the touch most of the time, but it appears that this is likely just something that will always affect her.

Lillian's favorite activity - dress up
Last year, I had biopsy results to share, which will have to come later this year as Lillian's biopsy was postponed due to the entire family spending all of February with one of at least 5 distinct colds. We will have her biopsy in early April, leaving us with another week or so to stress and worry about it. Given the concern last year about a tight aorta, there is a decent chance that this will need to be ballooned during her biopsy.

Despite our worries for her biopsy, we feel that Lillian is doing extremely well, and we are eternally grateful for the life she was given. We always consider today to be a bigger day than her birthday, because without today, she wouldn't have a birthday at all. We have our donor angel to thank for that. 





Tuesday, September 4, 2012

A Wild Post Appears

August 31st
I feel that it is high time for a new post on this blog. I have neglected it for some time for various reasons (buying a house, Lillian doing totally fine), but seeing as it has been almost half a year since I last posted, I figured it was high time for a status update and another picture dump.
April 3rd
Health wise, Lillian has been doing pretty good overall since my last update. We've had a couple flus and colds; as well as huge fluctuations with lab levels, but this is fairly standard stuff post transplant. One item of concern is recent labs indicating decreasing kidney function, but that is likely due to Lillian not drinking enough. Even a never ending supply of chocolate milk doesn't appear to be enough, so we might have to resort to less desirable options like soda. At this point though, both the calories and fluids of that would be appreciated, as she is still chronically underweight.

April 6th - the concept of an Easter egg hunt is overwhelming

Developmentally, we've still a little behind. Lillian's way behind Annabelle in speech (at this age Annabelle was holding fully coherent conversations with us), only just now getting to the point of making attempts at words. Her attempts are still crude, but fully understandable to us. Her vocabulary has recently hugely improved though, so we're hopeful that it's a good sign of things to come. She also got her first sentence out last week - "Ailah, no!", indicating great things to come.

April 7th
Even though her speech mechanics are still quite rudimentary, her custom vocabulary is quite entertaining. For example, while Lillian still does not say "yes", she has a very enthusiastic "I dooo! I dooo! I dooo!" that takes it's place, and hearing it shouted loudly is always entertaining. Dada is still a word for just about everything though. I would estimate her vocabulary to be ~50 words at this point.

April 7th
In other areas, she appears to be catching up. She is a social player at this point, but needs to learn how to share more. She loves playing singing games like "Row Row Row Your Boat" and "Patta-Cake", and has a secret handshake with me that she loves to do at every point she can. She is an enthusiastic reader, although she rarely has the patience to sit through a book that she brings you. With her sisters, it is non stop running and giggling and general revelry. Even when they are playing nice though, there's usually a look in her eyes that indicates she's trying to do something naughty to get a reaction out of them and us.

April 9th
Her personality is really coming into bloom at this point. By looks she's a fairly faint red-head, but has the full attitude of one. Overall she's happy and friendly, but she has an ornery streak a mile wide, and is just as much of a troll as her sisters are. If we so much as dare to cross her, she not only pouts but tries to retaliate with sneaky slapping and general mischievousness (in once such instance, grandma pissed her off for who knows what, and two hours later during lunch, Lillian looked grandma in the eye as she slowly pushed her full plate off the table). She will be a handful for sure when she's older, but we will gladly take her strong, fighting personality, and attribute her success in part to it.

 Good progress so far, more than we had ever expected. Here's hoping the rest of the year continues to treat her well.If any Children's staff are still reading, know that we still love you guys, and in some ways missing seeing you all.

April 14th
May 5th
June 8th

July 3rd - pop its did not last long

July 6th
July 13th
July 27th - a late first trip to the beach
August 10th - chilling at the pool in Walla Walla

Saturday, March 24, 2012

Lillian's Heart Birthday and First Biopsy

Today is a huge milestone for us - Lillian's one year anniversary! We are thrilled that Lillian has done so well over this first year. Looking back, we never in our wildest imaginations thought that she would be doing as well today as she is. But we're thankful to be wrong on this one! To anyone who sees her on the street, she looks like a completely normal (if slightly hairy) child, and you would need to see her rapidly fading scars to tell otherwise. I guess the only thing we could wish for at this point is for her to stop communicating via high pitched screams and start talking. But we're certainly happy with the progress she's made. It's hard to believe that this is how she looked a year ago today (at the same time this post was... er... posted).

7-24-11 @ 2:33 PM

vs today:

She's made a staggering amount of progress in the year, matching a normal child's growth more closely than the expected growth of a transplant patient, which is a huge accomplishment. Lillian loves being at home now, and spends as much time as possible making messes (her favorite game is dump the bucket) and playing with her sisters.

Part of the post transplant treatment involves yearly heart tissue biopsies as this is the only way to actually check for rejection. Lillian had her biopsy last week, and I'm thrilled to say she passed with flying colors and no rejection. We do have some concern about her aorta getting a tad smaller around the graft points, but this is typical and just something we will be watching at this point. Overall, we're very pleased. 

While today is a very happy day for us, we're also tempered out of concern for our donor family today. A year ago, they gave us a gift that changed our lives, but one that only came at a time of terrible loss for them. While we have not heard from our donor family yet, and at this point don't expect that we will; we are eternally grateful for them, and hope that the idea of their child saving several others helps them with the pain of this time. In thanks to them, please enjoy again Lillian's video covering her hospital stay.

Finally, I think a big picture dump covering her first year is in order. Some you've seen before (especially if you're friends with me on Facebook), but I can't think of a better way to show how she's grown than to show you pictures of her.

3-24-11 - Up early in the morning waiting for transplant.
In the back waiting to go to surgery
A surgical assistant taking Lillian back
3-28-11 4 days post transplant and not in a fantastic mood
3-31-11 - 7 days post transplant and much happier

4-2-11 - Out of ICU and sitting up in a surgical ward
4-14-11 - Discharge day, Lillian with some of her main nurses
Finally! Going home!
4-16-11 - Lillian has been home for 2 days and is starting to get used to it
4-19-11 - Lillian's first (home) sink bath
5-28-11 - Back in the hospital due to a nasty flu/C Diff
6-9-11 - Look at me, finally a supported stander!
6-19-11 - Lillian being goofy
7-2-11 - One of Lillian's first experiences with the sun (delayed due to sensitivity to sun caused by meds). She reacts like any good ginger should!
Enjoying a bath (now one of her favorite things) later that day
7-4-11 - The girls all dressed up for the 4th.
7-23-11 - One of our first big milestones - Lillian's first birthday!
8-6-11 - Lillian playing with cousin Robert
8-8-11 - Back in the bath again (we do bathe her more often than the pictures would suggest)
8-11-11 - Lillian with one of her cardiologists, Dr. Matthew Files. As always, this is one of my favorite pictures that I've ever taken.
9-23-11 - 6 months post transplant
10-23-11 - I'm always thankful for Lillian's willingness to sit still and pose for a photo, especially since Annabelle refuses to ever sit still.
10-28-11 - At a friends for an early Halloween party in one of Mom's funky outfits.
11-17-11 - Another classic pose
11-22-11 - More of Lillian's playful side
11-30-11 - Look at how that scar has healed
12-9-11 - With little sister Ailah
12-21-11 - It's safe to say pudding is only after fruit snacks on Lillian's list of favorite things
12-23-11 - 9 months post transplant with an early Christmas present
1-13-12 - Lillian's first snow day
1-21-12 - Lillian has consistently awesome post shower hair
2-3-12 - Lillian enjoying the winter sun in our yard
Back with cousin Robert again
2-24-12 - Gogurt, yet another of Lillian's favorite things

3-11-12 - At the aquarium with Annabelle. This was exciting for Lillian to say the least, who threw a fit if we spent less than 20 minutes at each and every exhibit/tank
It's been a interesting first year post transplant. Here's hoping for health and adventure in her second year!