I am so late on this, but it has to be in the books...sorry! :)
I know I say this every month...well, in reality probably every day, but I cannot BELIEVE that you are already FIFTEEN MONTHS old!! We have had such a busy last few weeks and you have been right in on the action. Actually, you're most of the action. You keep us on our toes, that's for sure!
Here's a little snippet of what you've been up to...
You weigh right around 17 1/2 pounds and are around 31 inches long (sometimes those quick doctor's office length measurements aren't the most accurate). You wear 6-9 month pants and 12 month shirts. You're still wearing a size 3 diaper and have moved up to size 3 shoes.
You talk all the time. Most of it we can't understand but we are very curious about what you're trying to tell us. I'm sure it's funny. You said, "Mama, touch" a few weeks ago. I was SO excited! A subject and a verb...that's a whole sentence!! :)
You are a huge fan of brushing your teeth. You would do it for hours if we would keep refilling your toothbrush. You like to brush your hair too. You're such a big boy!
Just when we were looking to discontinue speech (feeding therapy), you became a non-eater. You are not a picky eater, you're just not a swallower. You gladly put food into your mouth and chew, then just before swallowing you spit it out. I guess it's your secret to staying your slim 17.5 pounds. You still get the joy of the taste but none of the calories.
You have become quite obsessed with a few things:
balls and water.
You get frustrated easily when you can't move something or get something to work. You try to lug that big 'bear' around and get really annoyed and start grunting when you can't get him on the couch or across the room. It's funny. To us anyway.
You can catch a ball. It has to be a good throw and you have to be paying attention (which is hard for you to do), but you can catch!
You love using your fork. You're pretty good at it and only want help if you can't get the food on yourself. You won't let us feed you at all anymore, spoon or fork. It's messy and slow, but you don't really eat anyway, so I guess it's not that big of a deal when you spill the food off before it gets to your mouth. :)
You are a cleaner! You enjoy wiping your face and the table or the floor, whatever is nearby when you're cleaning your face. You have also learned to pick up your toys when we ask you. I mean, you don't clean your room or anything, but you'll help pick up toys. When I start singing "The Clean-up Song" you know what to do. You're proud and so am I! If only it would last.....
Your love of water has carried over to the toilet.
You know where to go when we tell you to go to time-out. This is probably not a good thing, but it is an accomplishment none the less. ;)
Over the past few weeks you have grown up so much. You enjoy doing things yourself and aren't very interested in us helping you with things you are able to do on your own. It's so amazing to watch you learn and grow everyday. You are such a blessing to both of us, and we love you more than you'll ever know.
To the moon and back, Cheeks!!
Mama and Dada
This morning D went to see Dr. Shuler for his three month check up. We were pretty nervous for two reasons:
1. It's been THREE months since Derrick's heart has been checked by a cardiologist. We haven't gone more than six weeks without it being checked since I was 24 weeks pregnant. A lot can change in three months and that's a pretty scary thought.
2. Derrick has developed the apparently "typical one year old" hatred of all things doctor related. The past few times we've been to see the pediatrician he hasn't been the best patient, so we didn't have very high expectations for how today would turn out.
Boy were we wrong about #2! :)
We could not have asked for a better little patient today! While the nurse was listening to Derrick's heart he relaxed on the table with his arms up behind his head (yes, he still does that) and fully cooperated for the entire work-up she had to do. He played happily with a toy while we were waiting for Dr. Shuler to come in, then D allowed him do all of the listening he needed to do without screaming and pushing his hands away! So nice!
We were thinking it was time for an echo today, but Dr. Shuler said that it was time for an EKG instead. Helen wheeled the EKG machine in the room and Derrick said, "cah, cah!" The machine was not big and scary to our guy. Nope, it was a CAR! His favorite thing ever! While Helen stickered him up she sang (D loves her singing!) and he just sat there. She hooked the cords up to him and he sat still like a big guy the whole time.
(I said he behaved, not that he was thrilled!)
Then came the most entertaining part of the day for Derrick and me...Helen and Justin had a two-man band going while the EKG was doing it's thing. They were singing, clapping, drumming, toe-tapping and bee-bopping away. It was HILARIOUS! Needless to say, the stickers and cords all over his chest were not distracting at all while watching this performance! I really almost busted out the camera to record the big number, but I'm not even supposed to be repeating what went on behind those closed doors! :) Oops! It slipped. It was priceless...great nurses and great daddies...you can't beat 'em!
Overall Dr. Shuler was very pleased with D's heart. He said it sounded great with no added swishing other than what's normal for Derrick. The EKG did show that he's still having a premature beat every so often, but his body tolerates it fine. Just to clarify that a little for those who haven't spent countless hours listening to a heart-rate monitor, it would sound like this....
Does that make sense? Anyway, we'll just keep watching it. As long as his body continues to tolerate it and as long as it doesn't get worse, I guess that's just how he'll be. We got the "see you in 3 months" again and that was it. Painless. Thank you Lord! Whew!
Dr. Shuler said that Derrick was so good for all he's been through. He said a lot of kids don't deal with doctors and nurses that well when they've been in and out of the hospital and had so much done to them. That makes a mama's heart smile! :) Little does he know, D hasn't been such an angel for Dr. Bonnett and all of his ear infection visits! That's ok though, we'll take it!
After we left D's visit we headed down to Charleston to drop off a slew of BraveHEART Baskets! They were getting low and we were happy to make a delivery. (Not to mention I love any excuse to go to Charleston!!) There is such a sweet nurse taking care of the delivery of the baskets and we are so thankful for her! She said the kids were loving them! She said that they come upstairs out of the PCICU feeling yucky from surgery and that the baskets were like Christmas for them! We are so very thankful for all of the donations that are made to make the BHBs possible!
While we were at MUSC we also visited our friend Zach. He's recovering from the Fontan (the 3rd surgery Derrick will have) and he is doing great! He is so spunky! It's absolutely amazing to see how quickly these kids recover from major open heart surgery. I know I'd be lying in the bed moaning and groaning. They're up laughing and playing...the heart of a child. It's truly amazing!
Derrick is fifteen months old today. I have an update in my head, but it's been a long day and it's late so his most recent happenings won't be up tonight. Hopefully tomorrow!
Thanks so much for your prayers for Derrick's heart and for his visit today! It may seem silly, but we both get nervous when it's time for any visit where they're checking out his heart. It's especially nerve-wrecking when it's been a while. We appreciate the prayers so, so much. This is a scary ride, but it makes it a little easier knowing that people are praying for our son. We can never make you understand how much that means to us. Thank you!
We just returned from a relaxing few days on Hilton Head Island. Things have been so busy around here and we were ready for a much needed break. We left the computer at home so we wouldn't be tempted with email, blogging, facebook...nothing. And it was GREAT! I even left my cell phone at home (accidentally, but gladly)!
D was super excited about the trip...mainly because he got to SEE where we were going! It was his first ride with his car seat facing FORWARD. He seemed pretty happy about it for the first two hours of the trip. When we had about 45 minutes left, he decided to throw up all over himself.
It was disgusting, to say the least! Nothing like the South Carolina humidity mixed with the smell of milk the second time around.... :) Thankfully, this was no indication of how the rest of the trip went!
Hunter and Logan made us some yummy chocolate covered pretzels to enjoy,
and Derrick and Carter played with "cah, cahs" until their little hearts went "beep beep."
Derrick thoroughly enjoyed staying up until past midnight every night then took incredible 2 to 3 hour naps each day. And we had to wake him up then! I don't know why he can't do that at home! :)
Derrick wasn't overly thrilled about the beach this year.
I guess he doesn't remember putting his little toes in the water last year!
He was ok with the sand but a little unsure of the waves.
He LOVES the water, but he's usually splashing it, not it splashing him!
He LOVES the water, but he's usually splashing it, not it splashing him!
He did enjoy playing in the sand.
But more than any part of the beach, our boy loved the pool! I didn't get any pool action shots (hmm...I think I need to work on convincing Justin that I need a waterproof camera...) but by the time we were ready to go back to the condo, this guy was delirious from the sun and fun!
We had a great time and look forward to going to Hilton Head every year. Justin and his sister have many years of memories there, (they've been going to the same exact place for more than 20 years...oh that makes them sound old! ;) ) and we hope that Derrick and his cousins can have years of memories there too. However, they won't be at the same condo! Next year we're moving to a new place that will accommodate all ten of us comfortably at one time! We already can't wait! :)
I have lots of beach pictures that I want to post so there will be more to come. I'm so far behind but have to get it all in the books, so sorry! :)
On another note...My stomach is doing flips about this...D has a cardiology appointment on Tuesday. It's just his routine visit, but it's been a whole THREE MONTHS since the last one so I'm out of practice. This is the longest it's ever been and I'm nervous. Please say a little prayer that his heart still looks and sounds great!! And if you could add in there that he COOPERATES with the echo, that would be great too. :) I'll be sure to update on the big guy Tuesday night.
Thanks so much for all of the prayers, comments, everything...we appreciate them all more than you will ever know!
Did any of you watch Boston Med Thursday night? If not, you can check it out right below, and I highly recommend that you do. The show follows several different patients, but the reason we watched it was because it featured baby Sam, born with HLHS (which is pretty much what Derrick has, but D has some added issues that make his heart not 'technically' HLHS).
If you haven't experienced the birth of a heart baby, or the emotions that sending your baby off to surgery bring, this can give you a tiny glimpse of what it's like. I have to admit that I sat there and cried through the whole show (the CHD part at least). Not that you really saw much, but watching Sam's parents discuss surgery before his birth, hearing the relief in his mother's voice as she said, "He's ok, he's ok," when she heard Sam cry for the first time, being in the operating room as the surgeons worked away on Sam's walnut-sized heart...it made me realize just how close to the surface my emotions of Derrick's birth still are. Days go by without me wallowing in the fear of Derrick's heart, but watching that brought up those emotions and memories that I thought were tucked away a little deeper. Obviously they're not. They're still very, very fresh.
I was looking at pictures my mom had on her camera a few months ago, and I came across these pictures of Derrick...
This was the very first time I was able to lay my eyes on him. Justin had taken pictures of him for me to see, but this is the first time I saw him myself. I asked the nurse if I could touch is hand, and she told me yes. I stuck my hand through that first window, touched his little hand, and then he was wheeled away.
I couldn't hold him, couldn't nurse him, couldn't even keep him in the room.
It shouldn't have to be like that.
But, because there has been an amazing amount of research done in the last 25-30 years, seeing Derrick wheeled out of my room didn't leave me completely devastated. Because of the sacrifices of many parents and children before D, I had an incredible amount of HOPE that he could be ok.
CHD research is still grossly underfunded. There have been great strides made in the last twenty five years, but they're not big enough. There are still children and adults fighting the CHD monster and losing everyday. There are still too many parents hearing that dreaded phrase, "There's something wrong with your baby's heart." They still haven't figured out what causes CHDs and how to really fix them. Permanently. Most of the surgeries done are merely band-aids in hopes that by the time another surgery is necessary, there's more research for a more permanent or better fix.
So...until CHDs are a no longer part of the world as we know it, we will fight.
We're finally doing it.
Together with some great heart friends who are also passionate about raising awareness and money for CHD research, Hope for BraveHEARTS has been born! And we couldn't be more excited!!
HBH will focus on raising money for CHD research and supporting our BraveHEART Baskets. Please, browse around the site www.hopeforbravehearts.org and let us know what you think. Get familiar with it because we have a LOT planned to get this baby going! Please join us in prayer that it is successful in it's mission and can help bring HOPE to many families!
There's a page on the site called "Our BraveHEARTS" where we would love to have TONS of CHD kids AND adults featured. If you would like your child (or yourself) on the BraveHEARTS page, send a picture, diagnosis, and link to your blog/carepage/caringbridge site if you have one. You don't have to have a site to be on the BH page, and you DON'T have to be in South Carolina either! This world wide web connects us deeply, and no matter where you are, your family, your story can bring someone hope. Even if the story doesn't have quite the ending you would have planned. We would love to have a page filled with the faces of CHD. If you're interested, email the info to email@example.com.
We have our first official fundraiser coming up too...a golf tournament! We have been blessed to be chosen as the recipient charity for the 2nd Annual Big Ears Classic at Mid Carolina Country Club on Saturday, September 25!! Pull out your golf clubs and come join us! You can print the form here or email me (firstname.lastname@example.org) and I'll send it to you. We would LOVE to have a full course with lots of hole sponsors and great prizes to raffle away! If you're interested in helping in any way, we'd LOVE, love, LOVE to have your help!
I'll keep you posted, don't worry! :)
Until next time, have a safe and happy July 4!
Don't worry...Biggie made plans!
It has been SO incredibly HOT lately...they say it's the hottest June on record, although I'm pretty sure they say that every year. We were tired of being cooped up inside so we took a stroll in the park.
Daddy and D played in the grass,
and D had so much fun exploring.
He took a break to play with his "cah, cah,"
and was happy to enjoy the fresh air.
Please pray for our friend Parker. He had an MRI done today and the doctors told them that as long as everything looked good, they would see them in a month. When they got home from the appointment there was a message for him to go back in tomorrow. I know Parker's family would sure appreciate your prayers for patience and peace as they wait for the results from today. Please be in prayer that whatever they found will be something easily treatable so Parker can continue to enjoy his summer and keep wowing us with his preciousness.