Kaleb is getting ready to have his 11 month birthday, oh my gosh, which is AWESOME! His Children's PT and OT gave us a milestone chart, and as any good mother, I've started to OBSESS about all the things I'd like him to be doing. I'm sure there's a 12-step program I should be checking into(just like with the one for milk production), but for now I'll just have to try to keep it under control. His new skills have been entertaining us for weeks now:
Clapping, waving, saying Ma-Ma, rolling over all the way to the point where he gets stuck on his arm and screams for rescue(he has rolled all the way over once!), raspberries w/talking, high fives with each hand and both, removing his toys from a container in record time, sitting up all by himself, and he sprouted a tooth and a half! Every stage with him is cuter than the next, and we are truly loving having him here at home.
In addition to his developmental milestones, we've had major GI changes. When I posted shortly after his first surgery, the vomiting had disappeared. Unfortunately, after a couple of blissfully vomit-free weeks, it slowly returned to full frequency and volume. We had to spend some time in Children's having this observed, and after demonstrating his impressive vomiting abilities for a few days, an Attending GI whom we'd never met walked in to evaluate Kaleb. She suggested a medicine we'd never heard of, and in 1 dose, he didn't vomit again. Let me say that again.....he didn't vomit again! His miracle med is called Periactin, and it's categorized as an antihistamine. As a GI med, it capitalizes on the appetite stimulant side effect, and for some reason some kids stop vomiting. If you're the parent of a cardiac patient and your child has GI issues, run to your cardiologist and ask to try this medicine! I can't say enough good things about it...truly I could go on forever here...but I won't because you might start to think I've lost it. ;)
The GI-related hospitalization happened to coincide with the cath procedure we've had on the books forever, in preparation for his next surgery. The cath went amazingly well! For the first time, he recovered without complication, and was returned to the 8th floor within 24 hours. Wow! It was amazing, and we're told we owe it to no longer having obstructed pulmonary veins....we'll take it! The results from the cath were equally amazing, as the pressures and resistance indicate he is ready for his next surgery. Thank you God!
Speaking of his next surgery-it's next Thursday, August 2nd, at 7:30 AM! Yikes, it's just around the corner. My feelings are all over the place on this one. On the one hand, I'm terrified for the obvious reasons: it's our precious son having open-heart surgery again, Dr. Forbess has a lot of work to do, and this time nothing can wait! On the other hand, Kaleb is soooo ready for this surgery...and so are mommy and daddy! The best part of having this surgery will be finally being on the other side of it!
Last time, our incredible surgeon was able to fix the pulmonary veins, with minimal time on the bypass(very little time with his heart stopped), and strategically preserved the coronary stents in lieu of a BT shunt. This time, he must remove the coronary stents and attach the SVCs to the pulmonary artery. This procedure is called a bi-lateral, bi-directional Glenn. All this work on a heart the size of Kaleb's fist. No problem, right?! As Dr. Nugent says, "It's okay, he wears the goggles." I have to admit, I've become sentimentally attached to those cardiac stents. After all, they've kept him alive since he was 9 days old, and have made a surgical repair of his anatomy a reality instead of just a beautiful dream. They introduced us to Dr. Nugent, whom we will always consider more a member of our family than just his cardiologist. And believe it or not, Karl wants Dr. Forbess to save the stents for us. Of course, he just wants to see them. I want to keep them as a reminder of how everything started, and how blessed we are every day that we're together from here.
We are all looking forward to this next chapter in our lives with Kaleb. With this surgery, we graduate from Children's Safe at Home program. I don't know what we'll do when we can't call Kim and Joy for advice on anything from getting donor milk from the milk bank all the way to his constant vomiting and weight-loss issues. What will we do with ourselves not having to weigh Kaleb every day, spot-check his oxygen, and record every feeding in our log? Hmmm...let me think about this one for a minute. ;) And yet, there's a bitter sweetness to our graduation. Without this program, Kaleb wouldn't know what it's like to be home! We're so thankful for this program, we're researching ways to help them keep it going long after we're finished. But that's a blog post for another time...
Please keep Kaleb in your prayers this week, especially for the surgery and recovery. If you have a Kaleb shirt, please wear it again Thursday. We are so sorry we didn't order more shirts, by the way. So many people have been interested since we placed the original order back in March, and we wish there was time to place another one. If you don't have a Kaleb shirt, wear something green or with frogs! Please post pictures of yourselves wearing the shirts on Facebook, or email them to me at shoopmaj@earthlink.net please! The support we've received from all of you that follow us through family members, friends, Prince of Peace, WRA/Rockbrook, Facebook, this blog, or however you've found us is incredible. When Kaleb recovers from this surgery, we can't wait to introduce everyone to him. We are so close, we can taste it! Thank you, thank you, thank you! Enjoy the pics!
One day, one hour, one minute at a time,
Jenifer
With Yuki showing off the canvas letters of his name for his bedroom!
The best of a bunch of not-so-great shots of the tooth and a half!
Mommy loves my Elmo jammies best!
I love to play my piano with my hands or my feet!
Mommy's Butterfinger and Daddy's Oreo blizzards were delicious!
Mama's 1st Instagram Pic of me sweetly sleeping!
