Thursday, August 31, 2017

So Far So Good, and The Gene

Nathan said we don't need these glasses.
Sometimes it's like he's not even speaking English to me. 

I was going to start this post by apologizing for not posting updates more often, but then I realized I'm not sorry, I'm happy! We are so grateful that there haven't been any big changes that have warranted more updates, and hopefully we can continue to just check in every couple of weeks for a very long time. :)

We had a visit with our Cardiologist last week, and we also met with a Genetic Counselor for the first time. Ramona was, as usual, an excellent patient! She is so smiley and does a pretty good job of staying still, and this time she upped her game by waving at everyone and making her funny little excited noises. She is such a sweet little cupcake, just like her sister. We didn't get an echocardiogram this time. Her symptoms are still under control (Can I get another "amen" for Ramona taking her medicine?! Such a huge blessing.), and the doctor even said that the sound of her murmur was less noticeable this visit than it has been in the past (a result of the medicine working properly to ease the blood flow). With those things in mind, they didn't think we needed to take a look at it today. We will definitely do an echo at our next appointment in September, just to make sure everything is still looking the same. They scheduled and echo for Daisy at the same time so we can take a peek and make sure everything looks normal for her.

There was another doctor that saw us at the same time (I think maybe he was an intern, but I can't remember for sure), and he said Ramona was the only baby that was happy to see him that day. She's a special girl, and I love how she reminds other people that they're special, too.

Isn't she just a sugar frosted little cupcake with cherries on top?!

These sisters. So silly. 😍

When we were done there, we headed downstairs to meet with a Genetic Counselor. We've been waiting since June to see if Ramona's genetic tests would yield any insight into her condition. I should have written these numbers down when they told us during our original hospital stay, so I'm just going to be super vague here since I don't want to horribly mis-speak. There are a certain number of genes (???) that they think cause her condition, and of those they only know what about half (or so) of them are. So, there was a possibility that all of the tests could come up empty, just because they don't know some of the genes that they should be checking.

But, they think they found the culprit! I didn't think to ask what gene it was (I'll have to do that next time!), so for now we'll just call him "Gene." They actually found two genes that were unusual, but they think one is just a harmless family variation, and that Gene is the guilty party. Shame on you, Gene. He has something to do with the way muscle is bonded together (also should have written down more about what they said about this). Since they have found a traceable cause, the next step is to have genetic testing done for Nathan, Daisy, and me. So, we all got our blood drawn while we were there. We sure know how to have a fun family outing, huh?

This is allllll the stuff I pack every time we have an appointment, just in case
I don't get to come home that night. A co-worker pointed out that if I take the time
to pack it I'll never need it, but the time I don't pack will be the time I'll need it.
I always pack it.

Now, let me tell you about Daisy. We had her get her blood drawn first (we were afraid she would be more scared if she watched us first...and we're both chickens...), and she was AMAZING. They had three people come in to hold her down and they told Nathan he might have to help hold her legs. But, she just laid there, still as a stone, watching them. They had to get 2 little tubes, which seemed to take for ever, and she didn't budge or make a single peep until the last 5 seconds or so, and even then she just started quietly crying to herself with big silent tears rolling down her cheeks. It was the saddest thing I ever saw in my life. Then it was over! She was so brave, and we were so proud of her. They gave her a bugs bunny band-aid and brought in the prize box, and she INSTANTLY perked up. It was like the whole thing had never happened. She smiled at the staff and thanked them over and over for her prize.

She picked markers, which she was so proud of! Girly loves the art stuff.

They said we'll get the results back faster this time since they actually know what they're looking for this time around. But, for now, we wait. As usual. :) Waiting isn't so bad, though. I don't hate it like I used to, probably because it's normal for us now.

That whole day actually ended up being a wonderful, much-needed family day. We knew the family blood draw would be a hard act to follow, but we still managed to make the rest of the day even better:

We grabbed some soup for lunch, and Daisy couldn't wait to try out her prize markers.
She's such a careful color-er.

Ramona is only interested in table food. That stinker will turn her nose up
at any and all baby food (even fruit!), but she'll go to town on steamed broccoli.
She looooved Daisy's mac 'n cheese, too. 

When we were at the store, a woman I didn't know was telling me how funny
Daisy was and said I should take a picture to remember it. I'm so glad she suggested it,
because this is now one of my favorite pictures of us. Daisy rode like this
almost the whole time we were at the store because "it's my size!"

She latched on to this flamingo at the store, and how could we not treat her
after she was such a champ? She kept telling it she loved it and rocking
it to sleep. She's been hauling it around ever since and calls it "baby mingo."

We finished up the day with supper at Chuck E. Cheese. We don't even need to buy
tokens next time, because she was only interested in climbing on the games.

I ALWAYS get a family picture at Chuck E's. They're just about the only
family pictures we have with all of us, and they're always so fun. Daisy pushed
the button before we were ready this time. Sorry, Daddy's Face!

This really couldn't have been a better day. We had so many sweet moments with these silly girls. What a gift. Speaking of gifts, I just wanted to say THANK YOU again for the generosity that has been poured out on us. You've taken care of the gas to fill up our van for our appointments, covered lunch (often a very late lunch by the time we're out of our appointments!), footed the cost of doctor bills, and helped keep Ramona's medicine stocked. Just last week we got a bill in the mail from the Cardiologist, and the very next envelope we opened contained an anonymous gift that completely covered it. Thank you so much to all of our family and friends, known and unknown, who are helping us down this path. We appreciate you so much!

We also appreciate your prayers! Here are some specific prayer requests we have right now:
 - That Daisy does not have Gene (Also that Nathan and I don't, but we're mostly worried about Daisy)
 - That Ramona's medicine continues to help her symptoms
 - That Ramona's heart will be healed
 - That both of these girls will sleep better at night
 - Thanks for the many blessings we have received!

Aaaaaand I'll wrap up with a few more pictures. Because I can't help it. (Okay, I use the term "few" loosely. Feel free to bail out here and save yourself like 10 minutes of scrolling.)

Park time!

Church time. Those headbands lasted like 12 seconds.

She loves the nursery toys!

I have two dish helpers now. We get done in record time. Like "15 minutes of dishes
takes over an hour" time.

Oops. Should have watched that sponge more closely. Now she looks like grandpa!

She LOVES to swipe my water bottle. She spits out her paci and starts
bouncing as soon as she sees it.

She also likes to swipe my pizza.

Splashing her feet in the pool! She loves to spend a few minutes in the back
yard with grandpa when we get home from work. Daisy does, too.

The Carnival. Note to self: the tiny ferris wheel is NOT fun. Oops.

Supper in the backyard is so relaxing. Too relaxing. 😍

Road trippin'!
(I don't think aunt Maddie knows how to travel with babies...)

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name's sake.

Psalm 23: 1-2

Thursday, August 10, 2017

Quick Little Praise :)

Hi! At first I wasn't even going to write a post about this, because I thought it was just a silly little thing that wasn't worth bothering everyone about. But, then I realized that every blessing, every answered prayer, every reminder that we are cared for by our good father God is worth celebrating and sharing. And, really, this tiny little answered prayer been such a HUGE blessing to us for the last week. We are so very, very, very thankful that


Is has been such a heavy source of stress fighting to try to get her to take even a partial dose of her medicine, and for almost 2 weeks now she has almost all of it without fighting, spitting, wailing, or gagging. Thank you so much for your fervent prayers in this area. It has made such a difference in our lives, and we can visibly see that her medicine is helping with her symptoms.

Thank you so much for praying for our precious Sugar Baby. Please say a prayer of thanks on our behalf for this answered prayer, and please continue to pray for healing for Ramona. We have our next appointment with the Cardiologist in 2 weeks.

Aaaand, what's a blog without pictures, right? Here a few from the last 2 weeks! :)

Flying to California! She was a good little traveler, but she was definitely tired of being
cooped up by the end of our flights. We felt the same way. 

Chillin' with Aunt Georgie.

WHAT IS ON MY ARMS?! She doesn't know what sleeves are. Ha.

Daisy was SO EXCITED to see Ramona when we got back. She couldn't stop
hugging and kissing her and saying "Hi Nona! I love you!"

So silly. 💗
The only food she's willingly eaten thus far is steamed broccoli. This is not my child.

Big sister has been working on her play house!

What's summer without swimming and water toys?

One more picture of big sister that is just too cute. We went to a pizza party, and
Daisy had to sit on her Great Grandma's lap while she ate so she could share
her Great Grandpa's sandwich. 

Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
Isaiah 40:28

Sleep study & more

Playing (I use that term loosely) her tin whistle at Classical Conversations. Hi there! I keep meaning to post an update with the results of...