Saturday, March 28, 2009

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!

Tuesday, March 17, 2009

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)


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)

Thursday, March 12, 2009

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!!

Wednesday, March 11, 2009

Pray for me... pray for others

Pray for MeI'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!

Monday, March 9, 2009

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!!

Monday, March 2, 2009

Sick... again:0(

Yep, its back!! It all started Saturday afternoon with Gabby not feeling well. She got sick a few times & then spiked a temp. Poor thing... was absolutely miserable for about two days. Today, she seems to be feeling much better thankfully.

The weekend before I had the touch of the stomach flu, & this time its the chills, fever, stuffy nose, cough & chest congestion. I feel like I don't remember what healthy is. Oh, & Daddy even got hit this time. He's spending his misery in the bunk of a Freightliner.

Luckily, Miss Vaeh is just plugging along with her old standby cough! Nothing new (knock on wood...) so we'll keep praying that she makes it through this without having to endure anything more. Hopefully we can stay healthy until next Monday. She has her follow up with Dr. Butto & we find out if the revatio is doing its job. They'll check her pressures on an echo again. I swear she'll be able to do her own echo's by the time she's a tweeny-bopper! I'm hoping that we are able to lower her dose to twice a day. This every 8 hours thing (getting back up at midnight to give her her revatio) is for the birds. That, & maybe we can drop the iron. She's been on that since her cath - her hemoglobin was a little low.

Hopefully all of our "blogging family" is doing okay & staying healthy... I sent sanitizer before this post, so hopefully that prevents any germs from spreading!!