Thursday, February 7th

Since February is Heart Month, I thought now would be a great time for an update on Katelyn πŸ™‚

It’s been a little while since I have taken the time to write, we had a wonderful Thanksgiving and Christmas with our miracle girl. And we will be planning her birthday party soon, she is growing so fast! Its hard to believe that in 2 short months Kate will be turning two. Its strange because certain parts of the past two years seemed to take an eternity while we were living them, but when I look back, time has just flown by.

She is doing well, despite this crazy flu season. We stay home A LOT, safe in our little “bubble.” She doesn’t seem to mind, seeing as she gets to watch lots of Mickey Mouse, play with her toys and run around outside in the backyard all day long.

Even with the precautions we have taken, she has managed to get a couple stomach bugs over the last month. One hit her so hard, it caused her hemaglobin to drop and she needed a blood transfusion. We had two hospital stays and an unplanned trip to Houston all within a month; January was very busy!! I am happy to report, though, that February has been smooth sailing so far and we are very thankful!

We have her next biopsy and checkup in Houston set for April. Please keep her in your thoughts and prayers for good results! These trips (especially the biopsies) are very nerve wracking and stressful for Andrew and me. Its a lot of anxiety beforehand, so far we have been very lucky and have gotten lots of good news, but the fear is still there. We appreciate your continued prayers for Katelyn and our family.

Playing with her baby

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Sword fighting with Braden

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Seeing Santa, think she liked him?

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Swinging!

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Wednesday, October 24, 2012

I can’t believe it’s been nearly 4 months since I’ve posted an update!
Rest assured, no news is good news… Well for the most part.
Kate has had a few small bumps in the road but thankfully nothing too serious.

Let me back track just a bit so I can fill you in on the last few months.

August-
We started slowly catching up Kate’s vaccines. She will never be able to receive the live ones, but it’s nice to know she’s finally protected from some scary things!
Then mid- August, while changing her diaper one morning I noticed a spot on her bottom, kind of looked like a pimple. We took her to Children’s here in Dallas and they diagnosed her with a perianal abscess (ouch!) and gave her some oral antibiotics. She was not tolerating the medicine, it was making her extremely nauseous and she was in such pain from the abscess, we were worried she wasn’t keeping enough of the meds down to help her abscess heal. We called our transplant team and packed up to head for Houston. Andrew unfortunately had to stay in town to work, so Kate, Braden, my mom and I left for what we thought would be a 3 day trip. We ended up having to stay for 3 weeks! Her ANC (which is the number of specific white cells that fight bacterial infections) were so low, even with super strong antibiotics the stubborn abscess just would not heal.
Kate began seeing a team of hematologists with hopes they could find out why her ANC was so low. Normal people have an ANC into the thousands, our special girl had an ANC of… Zero. On a good day, it would go up to 40. Not good. They performed a bone marrow biopsy to rule out certain things, some being specific cancers that attack the bone marrow. Talk about a long few days of waiting for results. Thank God, she is cancer free. They found immature neutrophils (those specific cells), but for some reason that is still unknown, they aren’t being released into the blood. The drs discuss starting Kate on daily injections of a hormone to stimulate her bone marrow to produce neutrophils, called GCSF. They give her a blood transfusion to give her body a boost, her hemoglobin is always a bit low, but dips down even more when she’s not well. This transfusion gives her ANC a little boost as well and her abscess finally heals.
We get home just in time to start Braden in school right on time. And mommy has homework… Find a home health care company in our area that can come out and teach me how to give Kate these injections 😦

September-
Fast forward, oh about A WEEK, after getting home from Houston and Kate is up to her shenanigans again. She wakes up one morning with these painful red nodules on her feet, two on each one. We watch them for the day thinking maybe they are ant bites, but that night she spikes a fever. We are headed to Children’s in Dallas again! They drop some pretty scary potential diagnosis here and there… Septic emboli and an infection around her precious heart being the two that top the list. Luckily her fever drops and she is diagnosed with a virus. We are able to come home 5 days later and her feet finally heal. While we were in the hospital, she was started on her GCSF injections. She is now receiving those every day and although they are not fun, she’s a tough cookie! It’s harder on me than her!

October-
Kate went for her biopsy and check up at the beginning of this month. Everything looks GREAT!! Her heart is strong and healthy! Thank you God, and thank you donor family!

We are so blessed! Although these last few months have landed us in and out of the hospital several times and up to our ears in stress and worry, we are so very thankful these were just tiny issues and we have our precious gift from God bringing so much joy into our home.

Like always we ask you to continue to keep Kate in your thoughts and prayers. Thank you all!

Still happy as can be in the hospital. HoustonΒ 08/2012

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She likes to do everything the nurses do!

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We took lots and lots and lots of trips around the cardiac floor in this car, it helped us both stay sane. And Daddy, being the most wonderful daddy that he is, had a car just like this waiting on her when we got home πŸ™‚

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Posing with her bear that her sweet dr. brought her in Dallas. 09/2012

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She loved sitting by Ronald! She really will be in love when she realizes he’s the Happy Meal Guy! This was taken at Ronald McDonald House in Houston 10/2012

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Finally able to get out of the house and do some normal kid stuff! Picking out pumpkins with Bubba’s help.

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What other kid do you know that runs around the house hugging a Lysol can? She’s on germ patrol!

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Looking too grown up!

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And in case anyone was wondering, spaghetti goes on your head, not in your mouth!

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July 3, 2012

One year ago today Katelyn was given her precious gift. We are so proud of our little fighter, and so thankful she was given her second chance.

We had a little celebration for her today, complete with a heart shaped cake, balloons and a princess tiara!

She has come so far in the last year and she’s doing really well. She’s walking all over the place and has even started running. She says several words, the newest being “COOKIE!!!” (haha).

Recently she’s had some issues with her already low immune system that has landed her in the doctor’s office more often than we care for, but she doesn’t let it keep her down.

As always we appreciate your prayers that she continues to thrive, and these issues with her immune system are just a tiny bump in the road.

Here’s a few pictures from her celebration today.

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Her cake, that she grabbed a bit off the side when I wasn’t expecting it! Little stinker.
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These are her special gifts, we bought her a charm bracelet with a heart charm, she got an engraved locket from Momay, Papa, Uncle Scott and Uncle Craig, a bracelet from Grandpa, pretty new clothes from Grammy and (you can see two pictures above) her quilt in the background is from a group of mommy’s friends
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The light blue candle we lit today for her angel.
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We did a balloon release to honor her donor.
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What a difference a year makes!!
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And Braden got some special gifts too for being the Best Big Brother πŸ™‚

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Katelyn is ONE!

What a year!

Katelyn turned one on Saturday. We celebrated her wild year with a zebra party. She had a blast, she pigged out on hotdogs and cheetos… and of course cupcakes!

This morning we had her one year check up. She is 19.3 pounds and 29 inches tall. She is as healthy as can be, and she’s hitting all her milestones right on target! She’s crawling around all over the place, faster than we can catch up to her sometimes. She loves to walk holding our hands, along the furniture or while pushing her toys or a laundry basket across the house. She says mama, dada, and bubba, and if she’s feeling really talkative she will say ball and dog. I hate to admit it (haha) but Dada was her first word, I think she said it before mama just to tease me!

We make a trip to Houston in May for her appointment with the transplant team. Then again in July, and hopefully after that we will be able to space the trips further apart. I cannot believe in less than three months she will be one year post surgery!

Along with her pediatrician appointments and her transplant check ups, we are now throwing in some visits to the ENT! This girl has us busy!!! She started experiencing chronic ear infections beginning the first of February, they were just awful. As soon as one would clear up, another would start just days after the antibiotics. We were admitted to Children’s here in Dallas two seperate times for them, before her getting tubes mid- March. She must have stubborn ears because she has even had an infection since the tubes were placed. Overall, she is doing much better though, thank God!

I will update after our checkup with Houston, as always, we are anticipating only good news!! Thank you all for keeping up with Katelyn this year, she has come such a long way and we are so blessed to have so many people care about her!

Birthday lunch. Yummy!

Cupcake!!!!!!!!!!!!!

Riding her zebra in her birthday outfit.

Opening presents πŸ™‚

Here’s a few from Easter:

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Sunday, January 15th

We have great news to report!

Katelyn had her very first biopsy on Friday morning, and she did great! We couldn’t have asked for a better trip.

The doctors make this procedure as non- evasive as they possibly can, but its still a frightening thing to experience. Katelyn was put under general anesthesia and intubated. They put a catheter, basically a small tube into her femeral artery in her groin. They clip tiny pieces of her heart to be biopsied at the lab. They also check pressures and oxygen saturation in her heart.

First off, the best news… she scored a zero on her biopsy! That means she is experiencing absolutely no rejection at this point. They score the biopsies on a 0-3 scale, anything that is a 0 or 1 they consider healthy and don’t require any special treatment. A 2 or 3 requires IV doses of steroids to combat the rejection. Chronic rejection requires more drastic measures, and patients are usually listed for another transplant.

Her pressures and oxygen saturation were perfect. Her doc also checked the connection spot from where her original heart was and where the transplanted heart are connected. He said at time of transplant there was a slight size difference and the vessels in the new heart were getting slightly pinched. That area has now been evened out and they are fitting together great. This means she can stop her daily aspirin! Another med down πŸ™‚

Normally at the yearly biopsies they also check the coronary arteries for hardening, this is common for transplant patients and can also require another transplant. Kate’s doc didn’t see any point in checking for that now, since she is only 6 months out and she is doing so well.

Katelyn is just over 17 lbs now, since she made it to the ideal weight for her biopsy we are able to discontinue her higher calorie milk.

Its hard to believe in just 3 months we will be celebrating her first birthday! She is really trying to crawl, and I don’t give it much longer till she is cruising around the house. This little super star doesn’t let anything stand in her way, and sometimes its easy to forget that she’s not a “normal” baby. We have even started getting her out of the house on occasion. She’s gone to a couple different stores and restaurants in the last few weeks… I’m the crazy mom you see with the antibacterial wipes wiping down every surface of the shopping cart or restaurant table!

We are still so thankful for the support we receive from everyone. The kind words and prayers really go a long way. Thank you!

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Sunday, December 11th

It feels like forever since I have posted anything!

I apologize for all those waiting on an update, but like they say, no news is good news!

We have been to Houston twice for checkups since coming home in October. Kate doesn’t care for the drive much, but the appointments go just beautifully!

Her heart function is great, her labs look good and she is growing like a weed. Our big girl is up to 16 pounds and 26 inches as of her last appointment this past Thursday. We are so proud of her!! She has such an appetite, she loves her milk and her baby food (well all except for the pureed veggies) and lately has really enjoyed bites of our dinner. Tonight she even got little tastes of the hotdogs we roasted for her big brother’s birthday!

Her next appointment will be in January, it will be for the biopsy. They will insert a catheter into her femural artery and up to her heart. They check for any rejection she might be experiencing. We are extremely optimistic about this procedure and are anticipating absolutely no rejection since she is doing so visibly well, but its still nerve wracking. She will be put completely asleep while they do the procedure and will be admitted to the hospital a total of about 12 hours. If all goes well we are released to come back home, and she won’t have to be seen again until March! We are unsure of the day of the appointment yet, our transplant coordinator is going to call us in the next week or two to schedule. Please keep our sweet baby in your prayers, that the doctors don’t find any trace of rejection, that they only see healthy heart tissue!

We are so excited that we get to spend the holidays together in our own home. We’ve gotten to spend Thanksgiving with our families, we celebrated Braden’s birthday this weekend (he turns 6 tomorrow) and Christmas is coming so fast! At times it still feels surreal; as we were really expecting to still be in Houston when all this began.

Today we were able to take the kiddos to see Santa. A friend suggested we call and just see if they would open early for us one day so Kate wouldn’t have to wait in the crowd of kids and be exposed to all the germs. The staff was so accommodating and Santa was just wonderful. He made sure the whole place was disinfected for us, they really went above and beyond. Santa took a special interest in our little Kate, he told us his wife was also a transplant patient! So, in case you were unaware, Mrs. Claus has herself a new lung!

Since this will probably be our last update before Christmas, we want to wish you all a Merry Christmas, from our family to yours, thank you all so much for supporting our family through this tough year, and May God Bless you all this holiday season!

 

 

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Tuesday, October 18

It feels like it has been forever since I’ve updated here!

I am happy to say that Katelyn is doing great! We are back home together and loving it. Braden started Kindergarten last week and things are all falling back in place.

Kate had her 6 month check up today with her pediatrician, Dr. Radimecky. This was the first time we’ve seen him since the day he sent us to the ER. He is the first hero on a list if many. I really thought I would break down and cry at the sight of his face, but I didn’t! Go Momma!!

Katelyn is up to 14 lbs, 7 oz. She’s in the 25th percentile now; still a tiny booger but such an improvement in the past three months. She was under the 5th percentile right after surgery. We went over all the normal baby stuff, he was pleased with her development and said she looked absolutely wonderful. It was a great appointment!

We go back to Houston on November 3rd for her monthly check. Please keep our girl in your prayers!

Kate and Daddy

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And just because I think he’s a cutie, here’s a bonus of Braden on his first day of school.

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