Kaleb Prinz
Monday, March 28, 2016
Kaleb has a facebook page
As many of you know, we have not updated this blog in some time. We created a facebook account in Kaleb's name. It was easier to post this way for us. Please visit his page here: https://www.facebook.com/prayforkalebsheart
Karl
Karl
Sunday, February 23, 2014
What Really Matters
3 days after we got back from Boston, we had a routine cardiology appointment with Dr. Nugent,
and we were ready to discuss everything we learned while we were
there. To say the appointment didn't go well is a gigantic
understatement. We love Dr. Nugent...like
he's part of our family love him. But we showed up on the wrong end of
the ice storm....his 2 weeks in the ICU...one of his patients took off
to Boston for a 2nd opinion...and who knows what else we didn't even
know about? BAD....as in he used phrases like "ending up with a dead
3-year old" and I remember crying for most of the appointment. We
walked out of the hospital in shock, feeling very much like our support
system from the past 2 years had evaporated. And I know what you're
thinking...what did you expect when you decided to get the 2nd opinion?
This business of raising a critically/chronically ill child is not
about making friends with your doctors or loyalty to a medical
facility...even if they've given you the most precious gift anyone can
imagine--more time or any time with your child. It's about making sure
your child always has access to the best care possible, and the latest
information/technology/surgical techniques/etc regarding his/her medical
condition(s). In Kaleb's case, we need a hospital that is most
experienced in Heterotaxy Syndrome, an amazing cardio-thoracic
surgeon, and a fantastic cardiac-specific ICU. Although we're having a
really hard time with it, those are the ONLY things that matter in this
decision.
A week after the disastrous cardiology appointment, we met with Dr. Forbess
to go over the results of the MRI/3-D echo from Boston and get his
opinion on the best way to proceed with Kaleb's care. Though he chose
not to review any of the new scans/reports, he spent a lot of time with
us, and was mostly very kind in his approach. We are especially
appreciative of his time because there was an emergency surgery in
progress, and he was waiting for a page to head to the OR. Although we
hear differently from Nugent all the time, Dr. Forbess' approach to Kaleb's surgical future is very conservative. He not only recommended the Fontan(single-ventricle
option), he went as far as to say he sees a heart transplant in Kaleb's
future no matter what surgical approach we take. He spent a great deal
of time reminding us how far Kaleb's come, and seemed to suggest that
we should just be grateful he's still alive and is a Fontan
candidate. Believe me...we are incredibly grateful on both counts.
But at what point in your child's medical journey do you just
say....okay, let's just "cut our losses" and ignore the possibility that
there could be another way? He was very careful to say a 2-ventricle
repair was possible...just not, in his opinion, the best answer for
Kaleb. He gave us a much-too-rosy picture of life post-Fontan,
and even seemed to dismiss the idea of liver complications due to the
single-ventricle circulation. He encouraged us to meet with an adult
cardiologist, like his wife, who treats adult Fontans
to see how well they're doing. It sounded good. It didn't feel
right. We were also very concerned that Dallas wants to wait until May
or June to do the surgery. Another 4 months with oxygen saturation in
the mid-70s at rest(mid-60s during activity), activity level way down,
and vomiting way up. We left the meeting wanting very much to stay in
Dallas, but just couldn't shake the uneasy feeling of that reality.
The following week, probably the 3rd week of January, we finally got to speak with Dr. Del Nido, the surgeon from Boston whose opinion we had waited so long to hear. He sounded COMPLETELY different than he looks(like he's in his 20s and he's not!), was incredibly kind, and spent a bit more than an hour on the phone with us. It absolutely wasn't the same as getting to see him in person, but we are incredibly grateful that he spent the time making sure that (at that time) we completely understood our options for Kaleb and his opinion about the surgery. He started by telling us he believes Kaleb should have the bi-ventricular(2 ventricle) repair, and he detailed every step he would have to take surgically to accomplish this. It's such an enormous task, it's hard to imagine it can all be completed in one surgery. He'd be creating a septum(the wall down the middle of the heart), separating a functioning valve into 2, re-routing major areas of blood flow, creating anatomy Kaleb wasn't born with from cadaver tissue,and taking down surgical work that's already been done. In the end, Kaleb would have a beautifully unique, 4-chamber, pumping heart, and oxygen saturation of 100%.
It sounds incredible, and it is. They are doing this so successfully in Boston, they recently appointed a director to the newly created Complex Bi-ventricular Repair Program. But Kaleb is much more complex than most of the kids Boston repairs through that program. By his own admission, Dr Del Nido only sees 6-8 kids anywhere nearly as complex as Kaleb in a year. This will be a long surgery, with about 2 hours(minimum) on the bypass machine(with his heart stopped). Kaleb has Heterotaxy Syndrome, which makes the way he responds to his new circulation/repaired heart entirely unpredictable. The valves that he essentially creates from the one Kaleb has now might leak, and eventually have to be repaired/replaced. The nerve pathway inside the heart that controls conductivity(the part that keeps your heart beating regularly) could be irreparably harmed, and a pacemaker might be necessary. I could go on, but I know you get the idea. It's a terrifyingly huge open-heart surgery, and the risks are many. And if you're going to let anyone perform it, you don't want your child to be on anyone else's table but Pedro del Nido. But when I really think about everything that has to go perfectly to achieve success, I can't for the life of me figure out how to consent to the attempt.
That was several weeks ago, and we have seen Dr. Nugent for 2 Cardio appointments, a coffee, and a Mended Little Hearts event since then. Thankfully, we have recovered from the December appointment, and we truly feel that he is with us and being as helpful as possible. We have spoken to Dr. Marx(the Boston cardiologist) at least once more, sent follow-up questions to Dr. Del Nido that were answered, and spent countless hours discussing information that we sometimes feel seriously under-qualified to process. I have also had the help of some very brave heart moms, that I'm so proud to call new friends and supporters. And, of course, we have the most supportive families anyone could ask for. This is, by far, the hardest decision we've ever had to make....and multiple times a day, I change my mind.
We're going to Boston next Thursday, February 27th. Kaleb has a heart cath March 3rd and surgery March 5th, with Dr. Del Nido. We're not entirely sure about the surgery Kaleb will have until the Cath confirms that he's a better candidate for one or the other. I've begun praying not for a specific surgery, but for the BEST SURGERY FOR KALEB...and I know God already knows which one that is. Please pray with us, send us positive thoughts and energy, and continue loving our boy. We need it all now more than ever.
One day, one hour, one minute at a time,
Jenifer
The following week, probably the 3rd week of January, we finally got to speak with Dr. Del Nido, the surgeon from Boston whose opinion we had waited so long to hear. He sounded COMPLETELY different than he looks(like he's in his 20s and he's not!), was incredibly kind, and spent a bit more than an hour on the phone with us. It absolutely wasn't the same as getting to see him in person, but we are incredibly grateful that he spent the time making sure that (at that time) we completely understood our options for Kaleb and his opinion about the surgery. He started by telling us he believes Kaleb should have the bi-ventricular(2 ventricle) repair, and he detailed every step he would have to take surgically to accomplish this. It's such an enormous task, it's hard to imagine it can all be completed in one surgery. He'd be creating a septum(the wall down the middle of the heart), separating a functioning valve into 2, re-routing major areas of blood flow, creating anatomy Kaleb wasn't born with from cadaver tissue,and taking down surgical work that's already been done. In the end, Kaleb would have a beautifully unique, 4-chamber, pumping heart, and oxygen saturation of 100%.
It sounds incredible, and it is. They are doing this so successfully in Boston, they recently appointed a director to the newly created Complex Bi-ventricular Repair Program. But Kaleb is much more complex than most of the kids Boston repairs through that program. By his own admission, Dr Del Nido only sees 6-8 kids anywhere nearly as complex as Kaleb in a year. This will be a long surgery, with about 2 hours(minimum) on the bypass machine(with his heart stopped). Kaleb has Heterotaxy Syndrome, which makes the way he responds to his new circulation/repaired heart entirely unpredictable. The valves that he essentially creates from the one Kaleb has now might leak, and eventually have to be repaired/replaced. The nerve pathway inside the heart that controls conductivity(the part that keeps your heart beating regularly) could be irreparably harmed, and a pacemaker might be necessary. I could go on, but I know you get the idea. It's a terrifyingly huge open-heart surgery, and the risks are many. And if you're going to let anyone perform it, you don't want your child to be on anyone else's table but Pedro del Nido. But when I really think about everything that has to go perfectly to achieve success, I can't for the life of me figure out how to consent to the attempt.
That was several weeks ago, and we have seen Dr. Nugent for 2 Cardio appointments, a coffee, and a Mended Little Hearts event since then. Thankfully, we have recovered from the December appointment, and we truly feel that he is with us and being as helpful as possible. We have spoken to Dr. Marx(the Boston cardiologist) at least once more, sent follow-up questions to Dr. Del Nido that were answered, and spent countless hours discussing information that we sometimes feel seriously under-qualified to process. I have also had the help of some very brave heart moms, that I'm so proud to call new friends and supporters. And, of course, we have the most supportive families anyone could ask for. This is, by far, the hardest decision we've ever had to make....and multiple times a day, I change my mind.
We're going to Boston next Thursday, February 27th. Kaleb has a heart cath March 3rd and surgery March 5th, with Dr. Del Nido. We're not entirely sure about the surgery Kaleb will have until the Cath confirms that he's a better candidate for one or the other. I've begun praying not for a specific surgery, but for the BEST SURGERY FOR KALEB...and I know God already knows which one that is. Please pray with us, send us positive thoughts and energy, and continue loving our boy. We need it all now more than ever.
One day, one hour, one minute at a time,
Jenifer
How far we've come:
This
picture was taken by my mom on the morning we prepared to say good-bye
to Kaleb. It was 24 hours after he was born, and we were just minutes
from meeting Dr. Nugent and hearing about the possibility of Kaleb's
miraculous Cath intervention.
April 2012-Kaleb's first open-heart surgery
They told us to prepare for the worst, but God had bigger plans.
August 2012-Kaleb's 2nd open-heart surgery The Glenn
Discharged just before his 1st birthday
Sept 2012-LADDs to fix mal-rotated intestines and G-tube acquired
Being at home for several months agreed with me!
GI defects discovered, tube converted to GJ, and many nights at Children's
We made the most of that summer-swim lessons, family, and fun!
1st flight to Grandpa & Nana's-so much fun!
1st time in Grandpa's pool playing with his cousins-so much fun!
Flight home straight to Children's-not so much fun...
Beach trip 1 month later(still can't believe we were that brave so soon after his transport!)
Pure JOY!!
Our MIRACLE boy turned 2!!
5 weeks at Baylor Inpatient Feeding Program starting to eat and making friends!
Super big ICE fun at Mimi & PawPaw's
The Boston Adventure begins!
Christmas morning at Mimi & PawPaw's was extra special this year!
Valentine's Day fun in the leaves
Saturday, February 15, 2014
Long-overdue Boston trip update
We've been back from Boston for almost 7 weeks now, and it's been a whirlwind of toddler action ever since! The trip went very well. Thankfully, I chose the first morning flight there, so we arrived well before a HUGE storm that pretty much shut the city down for 24 hours. Yes, that meant we left the house at 4 AM. No, Kaleb didn't appreciate it....but, in fairness, we all suffered equally. ;) All the worry about how Kaleb would handle the flight, and he fell asleep about 30 minutes in...slept all the way to the descent, when his ears hurt from the pressure. Poor baby. I wanted to cry with him, since there wasn't really anything else I could do. Step 1-Get Kaleb to Boston....check.
I loved the city. It was between 5 and 20 degrees the majority of the time we were there, and I'm not even sure that included the wind chill...but what a great city! We stayed at the Longwood Inn, which is about 2 blocks from Boston Children's Hospital. Thank goodness Karl INSISTED we stay there for the convenience, blah blah blah. We had more than 1 "conversation" about it, and I was completely unconvinced of the necessity of staying there, all the way until we actually got there. Not only did the huge storm hit, but you don't want to have to drive a car there....and I'm from Dallas. We do traffic and crazy drivers every day. I'm not exaggerating when I say people drive crazy FAST(on ice) and there's no place to park that doesn't feel like you're paying a deposit on something. I could go on, but Karl you heard it here first...I was not quite as right as you were on this one...;0 Enjoy the feeling.
Sunday was our only "play" day while we were there, and the city was covered in ice/snow. My plan for a tour of the city didn't turn out as well as I'd hoped, so we ended up at the Aquarium. It was fantastic! Kaleb is REALLY into animals right now, so he just walked/was carried everywhere looking around laughing, clapping, and talking to everything. I think we easily could have closed the place. Of course, the men ate tons of seafood that day, and my mom and I had the first of MANY grilled chicken sandwiches. Yummy...
Monday was our first day at the hospital, for Pre-op. Cardiac surgery has it's own Pre-op area....hello...and it was very smooth. I got to meet the people I had been speaking to by phone for weeks, and in less than an hour, we were out the door. We took it easy for the rest of the day. The next morning, we were at the hospital early for the procedures. Kaleb was fine until they took us back, and then he figured out enough of what was going on to be pretty pissed. I don't blame him. They gave him something that snockered him pretty quickly....sadly, didn't have enough left for Mama...and off he went. I was surprised by how long it took, since we'd never had a sedated MRI/echo. It was a little more than 3 hours from start to finish.
While we waited, a woman from the PR department found us in our "Kaleb" shirts, and asked us if we wanted to go to a special concert given by the Boston Pops, What?!! Yes, please. I couldn't think of a better way to spend one of the hours...20 feet from the Boston Pops, Christmas music, and a couple Patriot players dressed as Reindeer. Kaleb would have loved it!
When we finally got to go back and see Kaleb, he was doing great! Comfortable, still resting, all his numbers looked good, and Dr. Marx(Kaleb's Boston Cardiologist) even came by to speak with us. He wanted us to know Kaleb's heart looked great considering-we never tire of hearing that. He also wanted us to know that, although complicated, he was confident that Dr. Pedro Del Nido(Kaleb's Boston surgeon) would offer us the bi-ventricular repair. This was incredible news! It was what we were hoping to hear when we started researching options all those months ago. He said we would talk more the next day at Kaleb's Cardiology appointment, and after feeding Kaleb 2 popsicles, they let us go.
Boston's Cardiology Clinic waiting room is about the size of Children's Dallas' entire clinic, and it was pretty full when we got there. I was shocked we didn't have to wait long, and Dr. Marx was kind enough to spend a little more than an hour with us. He went over everything they found in the MRI, most of which we knew. What we didn't know were several key details about his global syndrome, Heterotaxy, and some pretty important consequences of having the Fontan surgery(the 3rd open heart surgery Kaleb has been waiting more than a year for.) We've always been told things like, "but he has Heterotaxy", and "things will be so much better after the Fontan." Of course, I've belonged to the Heterotaxy Network and other social media avenues for Heterotaxy and congenital heart defects for some time now, and have tried to be as knowledgeable as possible. Karl and I have always thoroughly researched options, and tried to do the best we could for Kaleb.
After the first few minutes of the visit, when Kaleb high-fived Dr. Marx and we exchanged pleasantries, it was like someone started sucking the air out of the room. He started using words like "heart block" and "pacemaker", and saying things like "it's not if, but when..." When discussing the Fontan, we heard him talk about the likelihood of liver and heart transplantation, complications like Protein-losing Enteropathy and plastic bronchitis, and the fact that Kaleb is even more at risk for these things because of the Heterotaxy.
The subject of a bi-ventricular repair was also discussed extensively. This means that the surgeon would repair almost everything wrong with Kaleb's heart....in one big surgery...and at the end, he would have a heart with 4 chambers and oxygen saturations of 100%, or pretty close to it. When he described everything that had to be accomplished in that surgery, I wanted to throw up. I had an overwhelming impulse to just grab Kaleb and run as fast and far as I could...however irrational it was. Dr. Marx felt confident that Dr. Del Nido would be able to do the surgery, but he was very careful to say we would have to wait to confirm it with him when he got back in several weeks. Dr. Del Nido was out of town for the entire month of December, so unfortunately we didn't get to meet him while we were there. We knew that ahead of time, but were more concerned about getting the tests done so that we would have options. Several WEEKS of waiting to even be able to consider these options. Dr. Marx stressed several other things while we were there, but one of the main things he told us was that Kaleb needed his next surgery....whatever it was....soon-in the next couple of months soon. (Punch in the gut)
I hardly remember the rest of the trip, but I know it involved more seafood/grilled chicken, playing in the connecting hotel rooms, exploring the city, and trying not to think of what was to come. The flight home was equally fantastic. Kaleb fell asleep even faster...what?!!...and though we were soon back home and nestled in the crazy, we knew life would never be the same.
One day, one hour, one minute at a time,
Jenifer
Ready for adventure!
A little nap with PawPaw
I love fish!
Here we go...
So hard to stay awake at Pre-op
The big day!
Let me show you how this thing works! Don't you love my Handy Manny gown from Gracie's Gowns?!
Boston Pops, a couple of Patriots, and "The Night Before Christmas"
Yummy cherry popsicle!
Kaleb's "Boston" stylings
I make dressing for 10 degrees look GOOD!
The view from our hotel
The elevator area outside the Cardiology Pre-op---a good sign?!
Friday, December 13, 2013
Impossible Choices
That's one of the many reasons this next part is so important. This weekend we're going to Boston-Boston Children's Hospital specifically. You see, back in September we had a Cardiology appointment with Dr. Nugent at Children's Dallas, and we started talking about Kaleb's next surgery. It wasn't a subject I was emotionally ready to start thinking about, but it was necessary. At that appointment, Dr. Nugent made it very clear that he and Dr. Forbess(Kaleb's surgeon) see Kaleb's future with a single ventricle heart. This wasn't surprising information, because he's really been on that path since the beginning-and we were thrilled to be on it. It was just a little disappointing because there had been talk of a 2-ventricle repair, or if that wasn't possible, at least a 1.5.
Single ventricle heart kids have a series of 3 operations that are considered palliative...they don't fully repair the heart, but provide a unique circulation that makes life possible. He has had the first 2 of that series, and at this cardiology appointment in September, we started talking about the 3rd and final surgery. To be honest, I had only just started looking into it at that point. I was genuinely surprised to find some really terrifying information regarding quality of life, complications that lead to transplantation, and life expectancy. I knew it wasn't a full repair, but somehow I just always imagined it was safer.
After that conversation with Dr. Nugent, I started reading everything I could find on the Fontan(the name of the 3rd surgery in question). A lot of the information that I found came through a group I belonged to on Facebook, called the Heterotaxy Network. Heterotaxy is Kaleb's main diagnosis, and the group consists of the parents of Heterotaxy kids all over the world. The Heterotaxy Convention had just happened, and I read everything I could. Dr. Pedro del Nido, a heart surgeon from Boston Children's had given a presentation, and I was only able to read the PowerPoint. One of the things he stressed was, "The best chance for long-term survival is the aggressive pursuit of a bi-ventricle repair." 2 ventricles....it really stuck with me.
What if it was possible for Kaleb's heart to be fully repaired? Dr. Forbess said it was possible, but in his opinion, not his best option. I started thinking about how final that 3rd surgery was going to be, and I couldn't stop thinking about the possibility of a 2-ventricle heart. So I contacted the amazing mother of another Heterotaxy kiddo and huge supporter of Boston Children's, and I asked her to help get us in touch with Dr. del Nido. I never dreamed he would personally contact me, but when he did, our pursuit of a 2nd opinion from Boston Children's was in motion.
It's been a couple of months since the first email, and Dr. del Nido's team has reviewed all of Kaleb's cath pictures/reports, echos/reports, surgical notes-everything but Kaleb himself. They have preliminarily determined that a 2-ventricle repair is POSSIBLE, and they want to do further testing to confirm this opinion. We're going this weekend to give Kaleb this chance.
No decision has ever been harder. We love Children's Medical Center, Dallas. They gave us Kaleb, when no one thought it was possible. Dr. Nugent, Dr. Forbess, their teams, everyone in the Heart Center has saved Kaleb's life so many times, and we're more grateful than we could ever express. We truly believe there is no better place to take a child with complex heart disease, and there is no reason we would ever want to look anywhere else for Kaleb's treatment....except that they have already decided his future. A single-ventricle future.
We just have to know, without question, that this path is the best we can do for him. It may be. When Boston's testing is finished, if they recommend a single-ventricle path for Kaleb, we will gladly accept it and do what we've always done...everything we can to make Kaleb's life the best it can be. We will get him the Fontan, and be prepared for whatever comes next. Kaleb's always made his own path. The statistics are just numbers that we can choose to give meaning, or we can continue to have faith that there is a bigger plan for our little boy...as we always have.
But what if they say it's possible, and are confident of a good outcome? What if Kaleb's heart can be fully repaired? It would mean a totally different life for him. He would have a heart very much like ours....with oxygen saturation close to 100. That's 22 points higher than it is now while he's at rest-much more when he's moving around! It would mean running without tiring....playing little league...no heart transplant in his future(hopefully)...much better GI function that would hopefully lead to being able to take more food by mouth...the possibility of a longer life with less medical intervention. It's a beautiful possibility. And who wouldn't hope for that?
Years from now, God-willing, we will tell him the amazing story of his special heart. It's important to us that we're able to tell him that we did absolutely everything we could to make his life as long, healthy, and happy as possible. If we never fully research and explore the options for this last surgery that determines the rest of his life, how can we say that? So we go to Boston this weekend, and we're praying for the answers that will lead us to a decision about the best surgical path for Kaleb.
His testing takes place next Tuesday morning, and we'd love everybody who has one to wear their Kaleb shirts. Prayers for his safety during the procedures, the skill/wisdom of the Drs and nurses, and for a surgical plan that leads to the best possible outcome for Kaleb would be greatly appreciated. I don't know why, but I am especially terrified for this trip. Maybe it's because Kaleb's heart has been incredibly stable for more than a year now, and I have been truly enjoying our time at home. We've celebrated so many milestones: scooting, pulling up, signing, heart surgiversaries, walking, talking a little bit, expanding his love for learning and Handy Manny, his 2nd birthday, and starting to eat by mouth-each one such an incredible gift. Even though there are daily reminders that life isn't perfect, I've loved every minute of this time with him. And I'm not ready to hand him over again...once more into the unknown. I'll never be ready. It feels too soon, and yet, I know we are beyond blessed to have this opportunity. Tomorrow, I'll put on my "Big girl panties", and no matter how scary it gets, one look at Kaleb will remind me how important this is. Look out, Boston. Kaleb's coming to town.
Now more than ever....
One day, one hour, one minute at a time,
Jenifer
No bathtub at Baylor? No problem! We bring our own!
Workin' it out, with my favorite PT, Dan!
I craft like a boss...
Mama calls this my "Risky Business" look
Baby legs rule!
I love my PawPaw!
Sometimes a nap can't wait
This eating thing is tricky, but man...I'm doing it!
Kaleb's first snow day!
Sunday, October 6, 2013
Look out world, Kaleb Preston is 2 years old! I've been thinking about this day almost since he turned 1, and it was so much fun to put together. When I started planning, Kaleb was all about Elmo, and I was thrilled. Then in May, when he was in Children's for the GJ procedure, he discovered Handy Manny....and there's been no looking back. He has fun with all of his toys, but Manny and the tools are, by far, his favorites. After much entertaining debate with daddy about the theme of his party, I had to concede Elmo's defeat. Now those of you with kids probably know that Handy Manny has been out of the mainstream for a few years now. Shhhh! Don't tell Kaleb! Thanks to eBay, Amazon, and several consignment stores, we've managed to amass a pretty impressive collection of toys, as well as, put together a pretty cool party.
Of course, we couldn't just have 1 birthday party. After all, we managed to celebrate 3 times last year! ;) Why should this be any different?! We started celebrating on the real day, August 29th, with cupcakes to our wonderful therapists at Baylor Our Children's House. Kaleb even sampled a bit of a couple of the cupcakes during feeding therapy, but ultimately had the most fun throwing and smashing them with a monster truck.
That night, Mimi and Paw Paw joined us for cake and presents. Kaleb decided to show off a little of his new "I'm 2 attitude" by refusing to sit in his high chair without watching a Handy Manny video. Hey, at least we can be happy that he's really gotten the hang of the Baylor feeding protocol! He wasn't totally crazy about blowing out his candles or eating the cake, but it sure felt good to sing Happy Birthday to our big 2 year old boy! He really enjoyed playing with his new Handy Manny matchbox cars on the roller coaster, and putting together his new Melissa & Doug fruit puzzle(that mommy was WAY more excited about than she should have been.)
Since Kaleb's birthday will pretty much always fall on Labor Day, we had the party a week late this year. Several weeks before his party, Ragan's Hope put us in contact with the most amazing organization, Icing Smiles. This non-profit organization finds bakers in the area to make cakes for special needs/sick kids(AND their siblings) for special occasions-mostly birthdays. The first cake they make for you is called a "Dream" cake and is a multi-layer cake with a theme and flavor of your choosing, and is absolutely free. They are an amazing organization, and I highly recommend finding them on Facebook or their web page if you have a special needs/sick child or are interested in making a donation to a worthy cause.
Kaleb was matched with Annie Hall, of Annie's Culinary Creations in Murphy, Texas. When I talked to her, she was so excited about the design they had come up with for Kaleb's cake and couldn't wait to get started. All we told her was Handy Manny and the tools, white cake w/butter cream icing, number of servings, and she took it from there. Saturday morning, we drove to her shop to pick it up. It was AWESOME, and she and her mother were wonderful.
Meeting Annie was one of those times you know you've connected with someone you hope you'll always know. When she showed us the cake, I cried. I feel a little silly about it, but it was so perfect and beautiful I couldn't stop myself. In truth, I'd been crying a lot(happy tears) for at least a week leading up to the birthday. Kaleb loved it so much he just kept staring at it....it was so cute. We were fortunate enough to be able to spend some time talking to Annie and her mother before we had to leave to get ready for the party. While we talked, we took tons of pictures and had the most delicious breakfast ever! We are so grateful to Ragen's Hope and Icing Smiles for introducing us to her!
Kaleb's party was a blast! It was amazing to watch Kaleb play with his friends, and be surrounded by so much love. Kaleb loved every minute of Pin the Mustache on Kaleb, the Pinata, cupcake decorating, and trying to keep up with all his friends. We are beyond blessed to have had Kaleb for these 2 wonderful years, and we look forward to so many more!
One day, one hour, one minute at a time,
Jenifer
White cake/Vanilla butter cream frosting, tools/toolbox are rice krispy treats
Of course, we couldn't just have 1 birthday party. After all, we managed to celebrate 3 times last year! ;) Why should this be any different?! We started celebrating on the real day, August 29th, with cupcakes to our wonderful therapists at Baylor Our Children's House. Kaleb even sampled a bit of a couple of the cupcakes during feeding therapy, but ultimately had the most fun throwing and smashing them with a monster truck.
That night, Mimi and Paw Paw joined us for cake and presents. Kaleb decided to show off a little of his new "I'm 2 attitude" by refusing to sit in his high chair without watching a Handy Manny video. Hey, at least we can be happy that he's really gotten the hang of the Baylor feeding protocol! He wasn't totally crazy about blowing out his candles or eating the cake, but it sure felt good to sing Happy Birthday to our big 2 year old boy! He really enjoyed playing with his new Handy Manny matchbox cars on the roller coaster, and putting together his new Melissa & Doug fruit puzzle(that mommy was WAY more excited about than she should have been.)
Since Kaleb's birthday will pretty much always fall on Labor Day, we had the party a week late this year. Several weeks before his party, Ragan's Hope put us in contact with the most amazing organization, Icing Smiles. This non-profit organization finds bakers in the area to make cakes for special needs/sick kids(AND their siblings) for special occasions-mostly birthdays. The first cake they make for you is called a "Dream" cake and is a multi-layer cake with a theme and flavor of your choosing, and is absolutely free. They are an amazing organization, and I highly recommend finding them on Facebook or their web page if you have a special needs/sick child or are interested in making a donation to a worthy cause.
Kaleb was matched with Annie Hall, of Annie's Culinary Creations in Murphy, Texas. When I talked to her, she was so excited about the design they had come up with for Kaleb's cake and couldn't wait to get started. All we told her was Handy Manny and the tools, white cake w/butter cream icing, number of servings, and she took it from there. Saturday morning, we drove to her shop to pick it up. It was AWESOME, and she and her mother were wonderful.
Meeting Annie was one of those times you know you've connected with someone you hope you'll always know. When she showed us the cake, I cried. I feel a little silly about it, but it was so perfect and beautiful I couldn't stop myself. In truth, I'd been crying a lot(happy tears) for at least a week leading up to the birthday. Kaleb loved it so much he just kept staring at it....it was so cute. We were fortunate enough to be able to spend some time talking to Annie and her mother before we had to leave to get ready for the party. While we talked, we took tons of pictures and had the most delicious breakfast ever! We are so grateful to Ragen's Hope and Icing Smiles for introducing us to her!
Kaleb's party was a blast! It was amazing to watch Kaleb play with his friends, and be surrounded by so much love. Kaleb loved every minute of Pin the Mustache on Kaleb, the Pinata, cupcake decorating, and trying to keep up with all his friends. We are beyond blessed to have had Kaleb for these 2 wonderful years, and we look forward to so many more!
One day, one hour, one minute at a time,
Jenifer
Construction-themed cake from Kroger + some of Kaleb's tools= 1 tricked out Handy Manny cake!
Insisted on watching Handy Manny before participating in his own birthday
Such an amazing cake!
The amazing Annie and little dude!
White cake/Vanilla butter cream frosting, tools/toolbox are rice krispy treats
Beautiful AND delicious!
Of course, the Birthday boy had to have the first whack!
Cousin Noah
Maddox
Makenzie- she really got after it!
Adeline- she really tried to take it down!
Cousin Avy- she really went for it!
Hadley- Did I mention the girls were really tough?
Kaleb cheering on Cayden, who I can't believe I didn't get a picture of!
Enjoying the loot
Kaleb's wonderful nurses! These women are like family. We love all 3, and they are irreplaceable!
Antonioia, Margaret, and Lindz
Swinging with PawPaw
"Pin" the Mustache on Kaleb-totally hilarious!
30 minutes after the last guest left, he was OUT!
Love you so much, sweet baby...I mean big boy!
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