An old friend :0/

We've had an old friend stop in for a visit the past couple of days... I'm not really all that excited about it either. Let me introduce you all, again...

That's right. Our friendly (ugh) neighborhood nebulizer has returned from hibernation for the summer. This picture is from back in April because I don't have any current ones... its been that long since we've used it! I was hoping we'd get through at least October before having any sniffles here. Its been so long that I've almost forgotten what it is to hear the humming of that machine.

Miss Vaeh started in nearly a week ago with a simple runny nose. It wasn't anything big because everyone else had one, too... darn pollen:0/ So, yesterday she started in with the coughing & we broke the nebulizer out right away! Luckily we still had some pulmicort & xopenex left over from her last round that hadn't expired yet.

So this morning Miss V woke with a lovely "rattle-y" (is that even a word? It is now if you speak "Tina" - LoL) sound in her chest. After a treatment with her nebs, & a few good coughs, she sounds much better. Although there is still a lingering hoarseness to her voice. I may be calling the pediatrician later... still havent' decided yet.

In other news, we had a not -quite-so-fun weekend last weekend. We went to my cousin's house for her daughter's 1st birthday party. On the way home, Jon wanted to stop by & check something in his truck. What he found (or didn't find) was quite a shock... someone broke into his semi & stole his TV, Playstation, CB radio, flashlight & a bunch of CD's & DVD's, amongst other things. He also has a fairly good sized refrigerator in there & they tried to take it but didn't succeed thankfully! So, Jon called the local police department & they came out, wrote a report & dusted for fingerprints. Which meant in addition to all the lovely shards of glass that were in the truck, now there was a lovely layer of black fingerprint dust. He was very impressed with how quickly the police responded & that they actually took prints, but hopes aren't too high on recovering anything. Oh, the other thing is that the company's insurance won't cover any of his stuff. "It's all stuff that can be taken home every weekend when not in the truck." Can you believe that?!?! Oh well, we'll just have to make due I guess!

We're hoping this weekend doesn't bring any unwanted surprises like last weekend did! Hope everyone else is staying healthy & has a wonderful weekend!

Miss Moriah :0)

Meet Moriah & her parents, Justin & Victoria. Miss Moriah is a fellow heart friend (ToFw/PA,MAPCA's) as well as having been diagnosed with CHARGE syndrome & multiple other problems. She has endured 2 open hearts, 5 caths, & a tracheotomy, among many other surgeries. This precious little girl & her family have spent nearly 11 months in the hospital.

Currently Moriah is waiting to be transferred back to Stanford from CHLA, as she is having continued issues with bleeding and infections. She has endured so much over those long months spent in the hospital, as have her parents. Please join me in praying for this beautiful little girl & her family!

Happy Birthday, Miss Vaeh!!

Its hard to believe that it was exactly 3 years ago that we were in the hospital waiting to welcome the newest member of our family...

(isn't she beautiful?!)

It was unimaginable that we would end up in the NICU/PICU for the first three weeks, & many more to follow, going through helicopter rides, surgeries, crises, & nearly loosing her twice. But we did. Its been a long 3 years, but I wouldn't change them for anything. Because if I did, I wouldn't have this beautiful little girl that you see now...

I cannot begin to imagine my life without this precious little girl in it (or her big sister;0). And because of her, we now have added such a wonderful extended "family" through this journey we've been on. There are so many of you who have helped us get through these past 3 years & I hate to think of where we'd be without each & every one of you. So from the bottom of our hearts, thank you for joining us. We love you all!! Happy Birthday, Baby Girl!!

Firsts...

So I've been waiting to put up another post, so I'd have lots to share with you all. So here goes... let's start with the firsts, shall we?

Last week, Miss Gabby started kindergarten!!! The schools here started late due to building/road construction. Needless to say, all the kids were ready to start this year. The first day went really well! Of course she said she loved it! The biggest things she told me about were having recess twice & lunch (LoL)!

Here's my big girl... Gabby, the kindergartner!

I think we both did quite well on her first day. I only shed a few tears & not until after I had dropped her off. I think it was much harder on me than her;0) She was sooo ready & had a wonderful day. She continues to tell me that she "loved it" when I ask how her day goes. I wish someone would tell me where the last 5 years went?! (LoL)

Another first happened today. Miss Vaeh went to "class" as she likes to call it. We got her back pack ready & headed over mid morning today. She was all too willing to go to class & leave me in her dust! "Bye, Mom! See you later... this MY teacher!" This is what she told me as she walked into the classroom today. When I picked her up, she tried her darnedest to stay... "me wanna stay here!" Well, of course we couldn't, but it really made me feel good to know that she enjoyed herself. The therapist that worked with her today is one of the gals that started originally when Vaeh first started therapy here at the house. Barb said Miss Vaeh is definitely behind with her extensor strength, as well as her abdominals & overall. I am confident that she'll make up the lost ground in no time!!

Here's little Miss on her first day of school!

I'm hoping that both girls keep up with their love of school. It will make life so much easier in the long run!! Now I'll just have to figure out what to do with my "spare" time - LoL!!

New editions...

Yep. We added to our family, in a rather large number... 22 to be exact. We've actually had these newest members among us for nearly 2 months, but I've been quite the procrastinator ;0) Here's a photo of part of the bunch:

Jon & I both have wanted an aquarium for the house. I've always loved watching fish swim... they look so peaceful & graceful. Jon's Dad had aquariums when Jon was little & he's always said he wanted to have one.

We started off back in January with a 5 gallon tank that we bought for Gabby for her birthday. I think I posted about how we went through quite a few gold fish in a short time. We decided after losing nearly 15 fish inside of 2 months, that we would try tropical fish instead of goldfish. Our 'dream' however was to have a larger tank. I was at my Mom's shop one day & Holly (one of their floral designers) said that her Mom had a big tank that had been sitting empty because she got tired of taking care of it. I asked her to get the particulars on how big, how much, etc. So a few phone calls later, & we have what you see in the picture.

We ended up getting the whole set up for a huge bargain, so much so that we just couldn't pass it up! So we now have a 75 gallon tank, a 5 gallon tank, & a beta bowl! In all we have 22 fish, including 2 sharks! Vaeh picked out one of the sharks & named him "Sharky" (such an imagination she has when it comes to naming things ~ LoL)! We are really enjoying having them to look at, plus its helping me teach the girls a little responsibility with feeding & caring for them.

In other news, Miss Vaeh will actually be going to preschool!... sort of. I'm not sure if I blogged about this, but about a year and a half ago, the county changed providers for therapy through the Help Me Grow program (here in Ohio). The gals that worked with Vaeh in the beginning had a tough road getting through with Vaeh, but once they broke that barrier, she really began to work with them & progress. Right about the same time, the county switched providers. As a (now former)therapist assistant I knew more than the average mom did when it came to Vaeh's treatment, although I never dealt with pediatrics. There's a world of difference, but there's enough similarity that I knew the new therapists weren't doing anything to benefit her.

With Vaeh "aging out" of that program, she was up for evaluation by the next level therapists... who just happened to be the original girls. In the spring Vaeh had a "play-based assessment" by some of the staff that would possibly be working with her. At that time they said that Vaeh didn't qualify for services. A few weeks later, I got a phone call about Norma (Vaeh's original PT) wanting to take one last look at her before she signed off on her not needing services. Well, Norma was here on Friday & she said that, even though it was by a very slim margin... Vaeh does qualify!! She still considers her about 8 months behind on gross motor skills, which boils down to she doesn't jump/hop or do stairs independently.

I was ecstatic!! Vaeh will get to work with the girls that got her so far in the beginning! Even though they still consider her "behind" they're going to be able to help her get what she needs! For right now, she'll be getting what they call "itinerant" services. Basically I have to take her to the building & then pick her up when she's done. I think they'll even get her into a classroom situation, which is wonderful!! I'm so excited.

So, both of my girls are going to start school this year:0/ I'm very excited, but at the same time sad... what will I do?! (Let's just say there's a few ideas floating around...)

Hope you all are having a nice extended weekend!

Mistakes...

Well we found out for sure. Vaeh has been getting the wrong dose of her medication this whole time. Actually half of what the doc ordered. Believe me, I was NOT happy at all ( & yes, heads did roll!)!! I won't go into the gory details, but lets just say I ended up in a shouting match on the phone with the pharmacist. Then Jon physically went to the pharmacy & spoke to this man & got two different stories inside of 5 minutes... UGH!!!!!

This fella that I ended up "shouting" with was a covering pharmacist... not even the person who normally works. The regular pharm. was there today & got everything straightened out. But they still could not answer how the mistake happened in the first place. So trying to cover, he gave us a gift card for this store. Not sure how I feel about that....

Since she has been getting the wrong dose, & since Revatio is a vaso-dilator, we have to increase her dose slowly. We start tomorrow with 3mL's every 8 hours. Then 2 hours after her dose I have to check her blood pressure. We do this for a week, call the card. office with her pressures, & if everything is okay, we can increase to 4 mL's. I did call the card's office to get parameters for her pressures 95/60 to 99/65. If her systolic goes under 80, we have to call the card.

I'm kinda dreading this, because I remember when Vaeh first started taking revatio she was sooooo sleepy. It took her about 2 weeks to adjust to being on it. Jon & I are kinda hoping that her having been on it for so long, & we're gradually increasing the dose that she won't have a reaction this time:0/ Its a really good thing that I noticed the difference in the dosage. Who knows how long it would have went on if I hadn't spoke up. That, & it just makes me wonder what her RV pressures would have been if she'd been getting the correct dose?! It just goes to show that the only one looking out for our kiddos is us!

As for how we're doing, us girls are enjoying having Daddy home! We went & got a new laptop, as our previous one is on its last leg. We also added to the family again... I'll save that one for another post;0) Plus I've been going shorter, & may go even shorter, with my hair & dyed it darker! I promise if I do go shorter, I'll post staged pictures:0)

Hope everyone else is doing well! A quick update on Mr. Logan... he's home! Thanks for checking in!! Have a great weekend!

One less...

Yep. We are now showing "one less" medication on Vaeh's list. We were able to drop her lasix as of her appointment with Dr. Butto today!!

It was a fairly good visit with our 'friendly neighborhood cardiologist'. Miss Vaeh was an inch taller than 3 months ago at 35 3/8 in., & nearly a pound and a half heavier, weighing in at 29.5 lbs! Her EKG went as smooth as one could go, looking normal (for her;0) & her echo went well, too. Despite the technician seeming to not know what she was doing. It happens every time we go & this particular gal is working. She seems very uneasy completing the echo. I'm not sure if its just with Vaeh, or its like this with all her patients. She inevitably calls for Dr. Butto to come in & he has to show her where things are, tell her what exactly to look for. Today, Dr. Butto came in & had to ask her to redo everything that he wanted to see (tricuspid regurg, her PA's, & the RV pressure)... ugh!

So, her RV pressure has come down some. He said it was 45-50 last time, & today it was 39-41 depending. So we're still on the revatio. The dose, however, is under question somewhat. I asked him to write another refill, because we had run out. He asked me the concentration, which I didn't know - the pharmacy didn't put that on the bottle. After checking her chart, the nurse brought in the script & it had a different dosage than what Vaeh's been on for the last 3 months. So, after we talked about it, the nurse called the pharmacy where we had it filled. They didn't know what her concentration was & why we were instructed to give her half the amount that Dr. Butto wrote. "The person that compounded it will not be here until tomorrow," was the response we got.

WHAT?!?!?!? You mean there's a chance that we've been giving Vaeh the wrong dosage for the last 3 months?!?!?!? So, after letting my blood pressure come down out of the rafters, I'm going to the pharmacy tomorrow to get the refill & get some answers!! Lets just say that if we've been giving her the wrong dosage, heads will roll!!

Other than that, everything went fine & we don't have to go back for another 3 months!! I'm hoping that her pressures continue to come down & we can get her off the meds. Although I'm extremely happy about only having one medication in the cupboard!! That's a first in her life!

So, we're enjoying having Daddy home for the week... hope everyone else is doing well!

Prayers for Mr. Logan:0)

Our little heart friend, Logan just had surgery yesterday & is doing fairly well. According to his blog, he's off the ventilator & into the recovery phase. He could use any extra prayers you could pass along their way.

As for us, just the normal things going on around here. Jon is on vacation next week, so we get to have him around for a whole week! The girls & I can't wait!! Miss Gabby had her kindergarten testing & has orientation the first week in September. So in a couple of weeks, it will just be me & Vaeh here during the day! I'm excited & at the same time dreading it:0/
Miss Vaeh also has her follow up date with Dr. Butto. I'll be sure to let everyone know how things go:0) Hope everyone has a great weekend!!

Littlest Hero's Project... part 2

Okay, I couldn't figure out how to copy any of the other photos that our photographer Amanda sent to me today:0( So instead, I'm posting the link for all of the photos that she's sending me on a disc so that I can print as many as I want! How great is that?!?! Here's the link...

http://flickr.com/gp/momarazzi/j85i13

Okay, & just so y'all know... you're getting to see these photos before Daddy does!! Since he's out on the road & without access to a computer, he has to wait until he gets home:0( He knows that I've gotten the link & that the CD is on the way, so he's quite anxious!

Hope you all enjoy them as much as I did! Let me know which is your favorite & I'll share mine later!