Tuesday, October 10, 2017

Update and Notes From Nathan

This girl loves to go outside (if it's not too hot).
Hi again! Just checking in with another update, and then we'll feature special guest author/cute husband, Nathan! And lots of pictures, as per usual.

***In the time between when I started writing this and when I'm actually posting it, we've had a slight change of plans. So, I'm leaving the original post as is and the "***" toward the bottom will be the update. The update update, that is. :)

We were supposed to go to the Cardiologist on the 29th, but we ended up going a week early on the 21st. Ramona had started sweating again the previous week, so we called on the 20th to see if we needed to change the dose for her medicine, and they asked if we could bring her in the next day. In case you don't remember (it's been a while, I know), at our last appointment in August they didn't do an echo since everything seemed the same, so they wanted to go ahead and get another look at her heart right away instead of waiting until the end of the month. We were also supposed to get an echo for Daisy on the 29th as well, and they said they could go ahead and do that on the 21st, too.

We had a bit of a hiccup with our insurance that morning, but after 5 or 6 phone calls it was all worked out by the time our appointment started. We started with Ramona's echo, and she was a little feisty at first (she always wants to play with the wires), but soon settled down and was a champ, as usual. She and Daisy had both started to get colds the night before, so we'll chalk up what comes next to just not feeling very good. Because, next it was Daisy's turn, and holy mother of meltdowns. She did NOT want to get an echo. She's two, so we're already in tantrum territory, but this was a new chapter in that book. She's was all-out SCREAMING, flailing, kicking, spitting, smacking, and wailing. The poor echo tech, an older gentleman, was so nice, but Daisy just wouldn't have it. I tried to take her shirt off and she grabbed it with an iron grip (seriously, is someone taking her to the gym??? How can tiny arms be so strong???) and yelled "DO NOT TAKE MY SHIRT OFF! I NOT DO IT!"

We'd talked about it before hand, she's seen Ramona do it half a dozen times, and they even had one of her favorite cartoons playing, but it didn't matter. I finally had to sit behind her so I could hold her legs with my legs and pin her arms down. It was one of those things that was so sad and so funny at the same time. Poor girl. Then I had the idea that I should have had in the first place. I offered her a cookie. She instantly stopped screaming to mumble a sniffling ".....what?" I told her she could pick a cookie or a candy when we were done with our doctor visits. She picked a cookie. With chocolate chips. And then watched Sofia the First for a few minutes until her echo was done. Phew.

But our day wan't over yet! We went down to see the cardiologist when we were done with the echocardiograms. They took Ramona's blood pressure and pulse/oxygen, which went well, as it always does, and then Daisy got to do her meltdown thing again. She was screaming too loud to hear me remind her about the upcoming cookie. It was impossible to get a good blood pressure reading, but they managed to get the others done.

The doctor came in next with a couple of med students to listen to both girl's hearts. Daisy was okay with the stethoscope, possibly because they do that at her regular doctor appointments? Or because we have a toy one at home? Who knows. Everything is nonsense with toddlers. Anyway, we were so unbelievably excited/relieved/happy to hear that Daisy's heart looks perfectly normal! We're still waiting for genetic test results just to make sure we don't have to worry about it in the future, but this was wonderful news! We also learned that Ramona's heart still looks the same, which we also consider to be great news! Thank you for praying for our girls! They increased Ramona's medicine again to help control her heart rate, which in turn decreases her sweating. She's a pretty happy girl most of the time, so hopefully that means that she generally feels good.

So, all in all, it was a great day. We still have a lot of uncertainty about the future, but I think we'll just always feel that way to some extent. Our next scheduled appointment is December 21 (3 months away!!!!!) so hopefully things go smoothly and we don't have to go back until then. It's encouraging that her heart hasn't changed in the last 3 months (though it feels like it's been soooooo much longer than that since she was diagnosed - like, years longer). We do expect that her sweating will come back between now and then as she continues to grow, but the doctor was optimistic that we might able to just call and get her medicine adjusted over the phone instead of having to take her in, as long as there are no other changes or concerns.

And, to keep our promise, we headed to Chick-Fil-A (aka - the most delicious place on earth) to get that sister a cookie with chocolate chips. Then she played in the playland for almost an hour on a sugar high.

GOOD GRAVY. We got some kind of mutant monster cookie, but she wasn't
too upset about it. And that was the only thing she ate for supper.

***The Update Update*** Aaand the "no other concerns" thing was short lived. Usually when Ramona starts sweating, it's an indication that her beta blocker is slacking on the job, so they increase the dose based on her weight gain and that takes care of it. This time, after several days on the updated dose, she is still sweating. We called the cardiologist and she said there was room to increase her dose a little bit more, so we've raised that and are praying that this takes care of it without having to do anything else. We're also scheduled to go in on November 1st instead of waiting until December. If the beta blocker still doesn't fully kick in with this new dose I expect we might have to go even sooner than that. On top of that, Ramona has also had a little bit of a cold on and off, but is still eating well and staying active, which is good. Poor Daisy was sick on and off last week, too, but she's had a much crummier deal than Ramona, so we're hoping she hasn't shared it with little sister. This concludes the update update.

Nathan has some things he wants to add, and then I'll smother you with pictures and sprinkle some prayer requests on top.

So I am not very good at this but I first just wanted to thank everyone so much for all the prayers and encouraging letters. Every time something bad or difficult has happened God has shown himself to us, reminding us of several things, that we have no control but that he is taking care of us. The first month it seemed Ramona would not take the medicine and "randomly" she starts and it makes life so much easier for us. Then some bills came in, we have insurance but almost immediately we have been blessed and have covered them. A couple weeks ago I opened a letter knowing it would be a bill from the last visit, the very next letter is from a family member that had enclosed almost the exact amount in to cover that bill. I can't forget that and I don't want to. I say it not to ask for money for the bills but to show that God is do some really awesome things. This happening to our family has been difficult and stressful at times but He is using it for something special and I want to make sure everyone can see this. Again, I want to thank everyone for their prayers and encouraging letters. We truly have a great God who takes care of us. It is easy to forget that we need him and that he is there for us.

IT'S ME AGAIN. I'll go ahead and share some prayer requests first so you can bail out here if you don't want to see a whole bunch of super cute pictures. :) Please include the following if you lift us up in prayer:

- That Daisy won't have the Gene.
- That Ramona's medicine will continue to manage her symptoms.
- That she'll continue to take her medicine easily (she's been feisty about it again the last few days).
- That both girls will get over their sicknesses, stay healthy, and that Ramona won't get the crud that Daisy had.
- That we don't let stress make us cranky.
- That Ramona's heart will be healed.

We so very much appreciate your continued prayers! And here are some more pictures! Can't stop, won't stop.

The girls are so excited to be at church!

I'll take one baby to go, please.

We went to visit Aunt Georgie and Uncle Nathan so we could help paint
their house. The girls had so much fun with their cousins.
See their progress at http://www.morelikehome.net/

The weather was perfect in Indiana, so we got to take a trip to
Turkey Run State Park.

Everybody at the park!

Papa nappin' is these girls' specialty.

She's managed to get a hold of Daisy's beloved Elsa doll.
It might have been the happiest moment of her life.

Chillin' with the aunts.

We finally finished the play house!

Daisy LOVES going to Blastoff at Bushnell First Baptist Church!
If you're in or near Bushnell, you should bring your family!
We always have supper with Papa and Aunt Sissy.

They always pick green beans with Papa after work. And pick tomatoes,
jump on the trampoline, play in the playhouse, and put their feet in the pool!

"Cast all your anxiety on Him because He cares for you."
1 Peter 5:7

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

Update and Notes From Nathan

This girl loves to go outside (if it's not too hot). Hi again! Just checking in with another update, and then we'll feature spe...