Hey friends! Thanks for checking up on Emma Kate!
Things are going really well, and there isn't a whole lot to report, thankfully. We have been enjoying the spring weather and have been making summer plans. February was a pretty uneventful month, with the exception of CHD Awareness week. I did a little bit of researching online and found out that there will be a Congenital Heart Walk in May in Washington, DC. Since my parents live in that area, we plan on attending. So far Team Emma Kate has raised a little over $200.00. All of the funds will be donated to the Children's Heart Foundation. We're super-excited about walking with our friends and family and Team Charlotte, too!
In March Emma Kate had her quarterly cardiology visit. This appointment just included an EKG and a visit with Dr. Cardis. He gave us a great report, and declared that she is not "in need" of having her Fontan yet. As I have said before, her doctors are going to wait as long as they can for the surgery. The idea behind this is that years after the Fontan is when health problems arise that are not seen in post-Glenn patients. Also, the Fontan is the end of the repair process. Once this has been done, there isn't really anything else surgical that can be done for her heart. So, basically, they are buying time on the back end, if that makes any sense. In any case, the doctors will be ready whenever Emma Kate is ready! She is satting right around 82ish at this point. She weighs 22.4 pounds, and while that is still below the 3rd percentile, she is making steady weight gain, even if it is just a pound or two per year. She has not fallen off the curve, so that is definitely positive. Once her energy levels decrease, she starts losing weight, her sats are dipping into the 70s, or her heart function decreases, then the Fontan will be given more consideration.
Emma Kate is continuing to enjoy school twice per week. She loves playing outside, and when we go to the park or to her grandparents' house, she immediately wants to get on the swings! She's so full of energy, it amazes me! Usually, she gets up around 6 am (much to my dismay) and she does not stop until nap time. At one point she was napping for up to four hours, but she's napping about two hours on a pretty consistent basis. Bedtime is usually at 8. We recently had a visit from the Paci Fairy, who brought Emma Kate a Newborn Baby Doctor Barbie in exchange for all six of her pacifiers. She still asks for the paci daily, but she's now going to sleep a little bit easier without it. Next up: potty training!
Here are a few pictures from the last couple of months! Enjoy!
Thanks for the great update, Bethany! So glad to hear Emma Kate isn't "Fontan ready" just yet. We too are hoping to delay the Fontan as long as possible. We just had a cath on Monday with results that said we can wait about a year (Chase will be 2 1/2 in a year). I'm hoping to hold off closer to 3 or even 4, but we'll let Chase "tell" us what he needs. :)
ReplyDeleteThanks for the beautiful pics, too! So glad you guys are enjoying some beautiful weather! Send some our way!
((Heart hugs))
Kathy
Great to hear about Emma Kate! She's so cute (well, all of your kiddos are) Yes, we've been given that same "scenario" about the Fontan...once you're on the other side of it, there is a "count down" to how long it will last, what other complications can arise, etc. There is not any easy ways to look at it...but the alternative is worse.
ReplyDeleteSo glad you have a heart walk to look forward to! How fun!!!
Hi Emma Kate!
ReplyDeleteMy name is Jenna and I came across your site. U are one brave, strong, determined, and happy fighter. U are a spunky, full of life, full of smiles and an inspirational hero.
www.miraclechamp.webs.com