I did it!!

Yep. I did it. I've been putting this off for quite some time now, though I'm not sure why I've been putting it off. Procrastination, I guess:0) (I'm really good at that!)

Oh, I guess I should tell you all what I'm talking about... The Littlest Hero's Project. I've known about this wonderful charity for a while now. When I first found them Vaeh hadn't had her final repair & was on O2. In my mind at that point I didn't want the pictures to have all the tubes, etc. Now I wish we'd done it then. Here's a case of hindsight being 20/20!

So I really decided to do all this around 10:30 last night, & by this morning I had an acceptance email!! So today I've been scouting out photographers on their list & emailing them back! Now its just a matter of hearing back from the actual photographer that we'll be working with! Its really exciting anticipating having another picture on the wall other than the one from the hospital - LoL!!!

Not much else going on around here. Miss Vaeh did fall & hit her eye on something & now looks like she has a streak of eye shadow on!

Oh, the joys of growing up "normal"!

Hope everyone else is doing well! I think we all need to band together & do a sunshine & warmth dance. That is if you live in the mid west!

Here we go again...

So, this was the scene in our house... again, this morning. Miss Vaeh has had a runny nose the past couple of days, but yesterday it kicked into high gear. Every time she turned around I had to wipe her nose. At times it even was a little bloody (I think from the dry air). Her eyes have been extremely watery & "goopy" with a lot of matter. She's even woke up with her eyes matted shut a couple of days ago:0( So after trying benadryl last night, to no avail, I broke the nebulizer out again this morning. She's just so stuffy sounding - like she's talking through her nose! So, for anyone who doesn't "speak Vaeh" its even more difficult to understand her - LoL!!

As for other news, Vaeh's really getting good at going up & down steps - with help, that is! That, running & jumping are basically the only reasons she's not "caught up" developmentally, according to the therapist. She is sooo close to running... we make her try it all the time. This for two reasons, really: 1.) she gets better with practice, & 2.) she's just so darn cute when she does it! I was actually able to catch her on video...

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Don't mind the crazy woman operating the camera & asking her to run over & over! I just can't help myself, she looks so determined with that arm pumping along! It reminds me of her first steps & having to have the purse on her shoulder before she would walk!

So, Miss V will be getting at least daily nebs until the weather warms up & stays that way. The weather forecast for our area is to be around 70 degrees by Friday, & then back down into the 40's & 50's with rain again by the middle of next week!!! Maybe by the time summer gets here it will feel like spring!

Happy Easter!!

Boy has it been a busy weekend! I know its been a while since I've posted. But last week my uncle was in the hospital because he had a blood clot! We think that there's something in the water around here. He is the 4th person in my family to have a blood clot - whew! So, because he was in the hospital, the girls & I entertained their kids (ages 8 to 12). Needless to say, there was a lot more noise, clutter & commotion around here!

Friday afternoon we colored Easter eggs:0) They all had so much fun, including Miss Vaeh! She had to have something to do while waiting for someone to pass her an egg, so Mawmaw had her 'stir' the dye - what a riot! She grabbed the spoon & stirred with all her might! Too cute!

Then this morning, we all got ready & headed down for the Easter contata at church. The girls looked so pretty all dressed up in their new dresses!! Although I don't think Miss Vaeh will be able to wear hers again:0( It is absolutely beautiful & fits great everywhere but... the chest! I was just barely able to get it zipped up! Well, at least I was able to get it on her this morning & get pictures of her in it!

Here's some pictures from our weekend!

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Hope everyone had a wonderful weekend! Hopefully some warmer temps are on the way on a more regular basis... I can't wait to get out in my flower beds & get things planted!!

Kids!

Okay, so for how long did I wish that Vaeh would be normal? Well she's getting that "normal" thing down pat! Not only does she act like a very normal 2 year old & a very normal little sister, but she also gets bumps & bruises in a normal sense. (Just now as I'm typing this post, I can hear her & Gabby getting into a little scuffle - must not be too bad, though, Gabby didn't yell "MOM!" - LoL)

We usually make it up to Mawmaw's shop (the florist store) once a week. We tend to pop in after we drop off Gabby at school. Yesterday happened to be our day. We stopped to pick up something that they needed dropped at Gabby's school, & they offered lunch. Plus, if I were to leave without Vaeh getting to see Mawmaw over lunch, I'd be mud!

Since there's not much time after that until Gabby needs picked up, we just hung around & talked with the girls. There's 3 girls other than my 2 aunts that work in the shop & Vaeh has fun with all of them! Missy takes care of stuff out in the green house, so her & Vaeh are now best buds. Vaeh LOVES going out to the green house. I told Missy that I'd bring Vaeh's high chair up & we'd set her out there when Missy's working & let Vaeh play in the dirt! I'll be sure to get pictures if we ever get around to it!


We were up in the main part of the shop & Miss V was busy running around between work stations. My Aunt Deb was taking a step back & didn't see miss thing & ... BOOM! Vaeh fell down. Usually no biggie & I was trying to blow it off, but Deb says "she hit when she fell." So when we were checking her over, we found it. There was a red line on her chin from where she had hit the edge of the shelf. It wasn't bleeding too bad, just a bit that anyone would expect. But the closer I looked, there was a very tiny gash. It was open, but again not bleeding too much. It was one of those cuts that if I'd taken her in to the ER they'd probably have thrown a stitch in it just to charge the insurance a little more (LoL)!!

So, Nurse Mommy back to work! We put a band aid on it after cleaning it & putting ointment on it. I pulled the band aid a little snug to try & hold the cut together. When we got home, it looked like it had bled some, so I took the band aid off to check it out. It had already closed!! But just to be on the safe side, I put a few steri stips over it. (They look better than the band aid I think...) Its a good thing I kept ahold of all the stuff we used to use for Vaeh's NJ tube:0) (I'll have to tell you all sometime about our experiences with changing the tape on THAT!) Here's what she looked like this morning:


It looks much better in person:0) The orange -ish stuff around the edges is an adhesive bonder to make them stick! So my hoarding of medical supplies comes in handy!

You wouldn't even know that she'd done anything this morning.. she's just as "normal" as ever!

She's baaack!

No, we didn't go anywhere. But ever since they put Miss V on this revatio, she's really been different. She had lost some weight. Enough that even the pc mentioned how skinny she was at our last visit - "she used to be... fuller?" She's down to skin & bones. At one point she was just under 24 lbs. (remember she had been near 27 lbs at one point!)

After we started the revatio, she became very sleepy, with very little energy during the day. The meds coupled with a double ear infection followed by an upper respiratory infection all in the same month really wore her down. Plus I have to wake her up between 11PM & midnight, so her sleep scheduled has been really messed up & that hasn't helped the energy level either.

Well, she's been making up for lost time:0) The past week or so, she has been eating everything in sight! Her appetite seems to have returned. For example, the other night Jon was home. He had been sleeping when we ate supper, so he ate about an hour after we did. Miss V was at his heels the entire time he was eating... begging "I want some!" She has done nothing but eat for the past 3 days, from the moment she wakes up until the moment she goes to sleep - "eat!" She's finally starting to fill out some, which is making everyone happy. Lets just say that even Daddy, who NEVER worries, was starting to get slightly concerned. But she's finally back to her old self.

Her energy level has returned as well! Right after starting the meds (which includes the broken sleep schedule) she would constantly say through the day "nigh, nigh" (night, night). She was easy to get down for a nap, that could last up to three hours. Then she was ready for bed sometimes by 6:30 - 7PM! Really not anything like the normal Vaeh. Well just like her appetite & eating habbits, her energy level has increased, too! She's busy from morning to night, not usually wanting to take a nap anymore!

Sorry I don't have any pictures... I took some of her the other night right after her bath, but she looks like a skeleton with skin on it & a round little tummy! They were almost frightening, so when I get some better shots of her clothed (LoL) I'll put them up!

We've also been in the planning stages of transitioning her out of early intervention into head start. Here in Ohio, Help Me Grow is the EI program. Children can receive services up until they are 3 then they have to transition. Well, Vaeh is just about 6 months away from turning 3, so the process has begun. And from what they tell me, she'll be in preschool this fall - ugh!! Okay, I love all this "normal" stuff, but give a Momma a break! Let me adjust a bit before throwing me another curve ball! Oh, why not - go ahead & give us your best shot! We're up for it!

Hope everyone has a great weekend! Its finally starting to get a little warmer... hope everyone is enjoying the weather!

Spring is in the air & a quilt square

Its been soooo nice outside the past few days... & the girls have been loving it!! We had gotten a swing for Vaeh so that she could play on the swingset, & Jon got it put up this weekend. So needless to say, we've heard 'wing' (translation = swing) a lot the past couple of days. Then yesterday we had the bicycles, or as Vaeh says 'bikle' out & they were both soooo adorable I couldn't stop smiling!

Look Mama, I'm flying!!

On the slide for the first time - wheee!

Mom, that's enough - okay, maybe not:0)

Room-a-zoom!

I love seeing them outside, playing together, in such a "normal" way!! I know Gabby loves being outside, but now I think that we've created a monster:0) Vaeh is going to be just like Gabby in that we're going to spend a lot of time out doors this summer!

As for the quilt square... I got an email today that said that Vaeh's quilt square was done. There was a picture of it attached to the email...

I had found the CHD Quilt Project & requested a square be made for Vaeh, but I had forgotten about it. I can't even remember when I requested it, but today I got the email with the picture of it:0) It is a quilt square that will be put together in a quilt with 41 other squares that were made in honor of other CHD survivors from all over the world! If I remember correctly, they'll be sending me a picture of the finished quilt - I can't wait to see it!

Hope everyone else is doing well & hopefully this nice weather is working its way towards becoming a staple! I ready to get outside & work in my flowerbeds!

**PS - hope the pictures give you a fix, Kathy!! :0)

Praying for Miss Grace

***Update: Miss Grace is out of surgery & extubated!! She's having some trouble with her labs so they are giving her some blood, but overall she is doing great!!

(original post follows...)

Isn't this face just tooo adorable?! This is our heart friend, Miss Grace. Since embarking on this journey through the world of CHD's, we've become friends with Miss Grace & her family. Today, they all could use your prayers. Miss Grace is currently in the OR at Riley Children's Hospital in Indianapolis for open heart surgery.

Its an all to familiar place for us, as well as a lot of our "family" that we've gained through this CHD world. And if there's only one thing that we've learned its that you can never have enough prayers!

So, if you'd like, just pop over HERE & let Miss Grace, her Mom & Dad, & the rest of her awesome family know that you're praying for them! At last update from Amber (Miss Grace's Mommy) they had gotten all of her lines in & were about to go on bypass, but that was earlier this morning. I'm sure things are going well & as soon as she can they're be an update, but lets just keep them covered in prayer!!

Pray for me... pray for others

I'm participating in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.





On another note, please keep little Miss Gracie & her family in your prayers today & through the next week or so. They are headed to Riley Children's Hospital in Indianapolis for Gracie's heart repair. The surgery is scheduled for tomorrow & today they are going for the typical pre-op stuff. As we all know how this part of the journey can be, please keep them in your prayers!

Okay, so enough of being sick...

Yes, we all had it last week. BUT we're finally getting back to everyone feeling a little better in the house:0) I was the only one who didn't go to the doctor last week. Jon even went to see the doc & took 2 days off work - totally out of character for him.

Vaeh does have a little bronchitis like thing going, Gabby ended up with an ear infection after having the upper respiratory stuff, & Jon was officially given the URI diagnosis. So needless to say, we have antibiotics everywhere in the house (LoL)!!

Now, on to some better news... Vaeh saw Dr. Butto today for another follow up. (Someday we'll get to a point that we can go longer than 2 months without seeing him... although we'll probably all go through withdrawl!!) She had a blood draw done last Monday to check her iron level, & we found out that we can stop the iron supplement that she had been on - yay!!!

Then on to her echo. Of course we had the echo tech that really seems to be somewhat uncomfortable with kids. Every time she does Vaeh's echo, she always has to ask for help, because she forgets that Vaeh has a right aortic arch. Then today, she forgot to look at her tricuspid regurg - which as Dr. Butto said is "the most important thing I want to see." I do know that after he looked at it, it was still okay - whew! Everything still looks good, & her RV pressure - that put her on the revatio (aka: viagra) is ... doing its job!!! Her RV pressure is still quite high, but it has lowered from 60 last month to 50 today - YAY VAEH!!! So we continue to take the meds & try to get the pressure to come down even lower. From what I understand, he wants her somewhere in the 30 to 40 range, but don't quote me.

So, all my worry was for not... as usual! Its so nice to have very 'uneventful' appointments. This boring life is quite nice - ha ha!!

She still is quite skinny, though... she weighed 25# today. That made me feel a little better though. At the pedi's office last Friday, she supposedly weighed 23lb 10oz. Dr. Butto mentioned it today, but didn't seem really concerned. She eats like a little monster, so I guess I'll just have to start adding heavy whipping cream to everything she eats! Hopefully when we go back in May, she'll have put on a few lbs! Oh, well....


Hopefully everyone else is staying healthy! I promise, I'm sterilizing these posts before I send them so that we don't share all the lovely germs we've had here!!