CHOMP!!!

I think I may change Vaeh's nickname to "Chomp". She's really starting to come into the 'normal' stuff that little sisters do. Today wasn't the first time this has happened, but it was the worst. Don't worry, its nothing too serious. But when I got home from picking "the cousins" up from school (who are spending the night with us:0)) this is what Daddy had to show me:


I know its hard to see, but that little red mark on Gabby's back by her left shoulder, is a bite mark!! Hence the name "Chomp." She's such a little stinker! Ever since we lost her tube, she's really gotten good at doing the little things... like taking a toy that someone else had, or biting. I don't know how to stop the biting?!?!

So, we'll see how the weekend goes, hopefully no more incidence of biting. That, & hopefully my house will remain standing since I have 5 kids here from the age of 12 down to 2. Hope everyone else has a good weekend!!

Looky here:0)

Can you see what my Mommy did to me?

If you look really closely, you can see...

Did you find it? Maybe take a second look...

Yep, we did it. We had Vaeh's ears pierced today!! I've wanted to do this for so long, but hadn't yet because of upcoming surgeries/procedures. And with knowing that you have to leave them in for 4 to 6 weeks in the beginning, we didn't want to have them done only to have to take them out for something. So, with knowing that nothing is remotely in the works, we did it!

She did absolutely super! They marked her dots on her earlobes, & by then she was starting to look at us like "what are you guys up to?" We had her sit on my lap, & Mawmaw was in front of her, distracting her. The gals that did the actual piercing stood on either side of her, lined up the 'gun' & 1-2-3! Just like that they were both done at the same time. Of course she cried, but when we showed her them in the mirror, gave her a loli-pop & some love from Daddy, she was happy as a clam.

They are so dainty... girl-y like & I love it! Just another step in the 'normal' direction! She's prancing around the house tonight like "look at me, I'm the prettiest girl ever!" She's just so darn cute.

Catching up...

Somehow I seem to have gotten behind on everything! I don't know how it happened, but I've been missing a lot in blog land! So, I apologize for not commenting, but I promise that I'm reading:0)

We were finally able to get Vaeh started on the revatio, thank heaven! I just hope that its doing its job. She really seems to be more tired since starting it. Another 'behind' moment for me... I need to google the side effects from revatio because the pharmacy gave me nothing!! She's still fighting the stuffy nose, & even ran a fever (low-grade) a day or two, but seems to be rounding the corner with this cold/infection or whatever it is.
** Here's a question for all my heart momma friends... do your little one's seem to get a bit cyanotic/bluish looking with a cold, even after a repair? Vaeh's had a couple of times where her nail beds have been off color, & her lips have even looked a little funny. (I should have kept ahold of that pulse ox monitor!) But at the same time she has these episodes of looking funny, her hands are also VERY cold!!! This is really hard to get used to since she was always such a hot box before her repair. The other day the speech therapist was here, & her lips were nearly purple. Although this could have been due to her having on a purple shirt! (LoL)

Since I mentioned her therapy, I should give you all an update on that as they were all back in this week. This is the first time since the end of November that we've been able to connect with them because of 'this & that' (all the surgeries & hospital stuff). The speech therapist was very pleased with how well her vocabulary is growing. There was a couple of things she suggested, to kind of help her begin to make longer phrases & sentences, as well as getting the plural down pat. So, basically she's caught up for the most part with speech.

Then on Thursday, PT & OT were here together. They always come & do a 'co-treat' where they work together, & this particular session was the most I've seen them do with her! (Yes, we dearly miss our original therapists). She was able to stack blocks, although she was more interested in knocking them down. She could also put the circle, square & triangle back in the puzzle. Then they gave her a pencil & she was able to draw a circle, line & tried to make an "X" as best she could. So, having done all that, she comes out at 30 months. Let's just say that I giggled, because she's only 29 months old!! HA!!! She's finally ahead of the curve! I never thought I'd see that happen:0)

When PT worked with her, she showed off how she could get up & down off the couch, which for me was quite impressive. She also went up & down off a step with a little help. While she was working with OT, she got down into a tall kneel - another check off the list! For PT she tested out around 19 months, which is great:0) Just 6 months ago when the did the official recheck, she was only about 11 months, so she's gaining quite a bit! The PT did say that what's basically holding her back from testing out at a higher level is that she's not quite running yet (15 months) & she's not jumping, which the therapist seemed to feel that those things were required a little early on the list.

In addition to all of the hubbub with Vaeh, poor Gabby has had 4 deaths - Bonnie & Clyde #1 & #2. We got her a small 5 gallon fish tank for her birthday & we've been through 4 FISH!!! Who knew goldfish could be so hard to keep alive!! We're in the process of trying again... I'll let you know how we fair with the next set! We've all got fingers, toes, & everything possible crossed!!

Hopefully everyone is doing well & staying healthy! Oh, & if you get a chance... stop over & say Happy 2nd Birthday to Elijah! Hope everyone has a good weekend!

Back to work!

I'm getting sooo excited about going back to work:0) I start tomorrow... yep, Valentines day. And yes, I'm going back on Valentine's day & on a Saturday voluntarily.

Okay, so its only for one day. And you probably wouldn't consider it working, but more like slave labor. I'm going to help out at my Mom & her sister's shop. Its a florist & wedding decorating shop. So as you can imagine, tomorrow will be very BUSY!! They've actually been busy all week - which is a good thing for any business owner in this economy!! I'm just excited to be getting out of the house to interact with other adults without having my girls along for the adventure.

Don't get me wrong, I LOVE being a stay at home Mom. But sometimes for sanity's sake, you just need to interact with other adults without children around! It will be nice to have some Mommy time - and let Daddy & the girls have some Daddy -daughter time together!

On another note... we finally were able to get the revatio filled & start Miss V on it. Its crazy how many people it takes to get something accomplished. When the whole denial thing happened Monday afternoon, the clinic in Lima said that Dr. Butto's office in Toledo was working on getting the pre-cert done & that I should call them to check on Tuesday. So, I called Tuesday afternoon (because the gal in Lima said it shouldn't take more than a day...) & had to leave a voice mail. No biggie. She did call back on Wednesday while I was taking Gabby to preschool. Luckily Jon was home. She told Jon that she would be working on it on Wednesday & let us know when she got the approval. Well, yesterday morning she called again - and talked to Jon again, & said "well I'm going to work on this today so we can get you a refill." Jon explained that we weren't waiting on a refill but the initial auth to get her started on the meds!!! Well I think the light bulb finally turned on. So yesterday afternoon, the Lima clinic called & she had gotten it approved for a year!

I must say that since there's been a change in Dr. Butto's nurse(s) I've wished his original gal, Patti, would come back!! There are two gals now doing the work that Patti used to do & still not doing as good of a job as she did - ugh!!! Oh, well, we've got her meds & started them.

Well, hopefully everyone has a good weekend:0)

Dylan

2nd UPDATE:
He's home! A repeat scan the following day showed absolutely nothing!!! After the past 2.5 months, no one can tell me that prayer doesn't work!! Thanks to all of you:0)


UPDATE:
Just to give a quick update on Dylan... they are now saying that it is NOT a bleed, but just a concussion. So, there's some questions to be answered, but basically Dylan is doing well. They're going to keep him overnight just to keep an eye on him, but things are looking good! Thanks for the prayers:0)

** Original post follows...



Hi, everyone:0) I know that this blog is about Vaeh & her journey through the world of CHD, but I knew I could come to our blog family for this.

Jon & I's nephew, Dylan, is in the hospital right now & we need all the prayers we can get! He is 11, & we all know how rowdy 11 year old boys can be:0) From what I understand, he was at a friend's house this weekend goofing around & bumped his head. His Mom took him to the doc's on Monday & they wanted to get a scan of his head, which he had done yesterday (not sure if MRI or CT). So, the doc's office called Chad (his Dad) & told him that "he has a bleed. He's allowed to go to school, but shouldn't be rough-housing, etc." So the plan from there was that Mandy (Mom) was going to call the doc today & get some answers.

Earlier today the school called Chad & to make a long story short, they are now in the ER with Dylan being evaluated. I'm not sure of the details (ie: what type of bleed, how bad, etc.) but we all know the power of prayer. So if you all wouldn't mind keeping Dylan & the family lifted up in prayer, we'd all greatly appreciate it! Thank you again, from the bottom of our hearts for your prayers for our family no matter what the need!

Bummer...

So, Vaeh had her follow up appointment with Dr. Butto today. It went fairly well, despite a few bumps in the road. Her echo & EKG looked good, with him noting that her heart function itself was good. Basically heart wise she's doing fine. Her lung pressures are still elevated. Meaning she has pulmonary hypertension.

I had heard them throw this around before when she was younger, but at that time her heart was a bigger issue so it was never really brought to our forefront. So, I had never really considered it. But now, since her heart is finally repaired & functioning well, this seems to be our issue now.

Dr. Butto said that basically the oxygen was doing the job, but that its so inconvenient that we can look at other options. He put her on revatio, which if anyone knows about vaso-dilators, this drug is in effect viagra! HA! My 2 year old GIRL is on viagra!! (LoL) This will help to lower her hypertension in the lungs.

Now for the even funner part of my day... insurance won't cover it. UGH!! It took me nearly an hour to find someone who could mix it (as it is a compounded drug) & the soonest they could have it is tomorrow. So, when I get home, there's a message that they can't get it until tomorrow & that the insurance won't cover it. Here we go again. So I called the pharmacy, the doctor's office & I think we've come up with a solution. Dr. Butto is going to call the insurance & basically tell them why they have to approve it. Hopefully it gets approved, because this is her secondary insurance that's denying it & the remainder of the bill is over $100!!

So, overall her heart is great, but the lungs are still an issue. So, if you all would keep Vaeh in your prayers, we'd again greatly appreciate it! As Jon said in the last post, you all will never know how much you all mean to us & the support that you give us! Thank you from the bottom of our hearts!

Oh, by the way - Happy Congenital Heart Defect Awareness week!!

Thanks to everyone!

Hi every one! Jon here. Don't worry, everyone is fine, usually the only time I leave a post on here is when something is not right, but not today!

This is something that I have been wanting to do for a while now and have finally gotten the chance to do so.

Just some quick background for those who don't know, I am a truck driver, and ever since our little Miss V. came into our lives, I had to go from driving local, to going over the road to make ends meet. I have always loved driving, but my family is so much more important to me, but when circumstances arise, you have to make sacrifice, and that's what has happened. I thank the Lord for giving me the skills to do it, it's a killer sometimes, but I get through. I normally leave out on Sunday night, and don't get back home till Friday night, sometimes, I do get home through the week, when things are slow, so with the economy the way it is right now, that is more often than usual.

So what I am trying to say is first and foremost, I give our Lord and Saviour all the thanks and praise for keeping me safe while I am on the road, and my three girls, Tina(my SUGARBABE), and my two Princesses, Gabby, and Miss V. safe and taking care of them while I am gone!

Now, on to all of you, from the bottom of my heart, I can not say it enough, but THANK YOU!
Everyone of you has been such a blessing to our family, and the love and support that you have given us is such a blessing. Not only have you helped Tina get through some tough times, but you have also helped me by being there for Tina when I am gone. Your thoughts and prayers have really helped her when I haven't been home, and I can not Thank you enough for that!

So again, first and foremost I again thank our Heavenly Father for all his blessings that he has given our family, and for placing all of you in our lives! I again thank everyone of you for everything, and we pray for all of you daily, and ask God to touch your lives like he has touched ours, and remember, one of my favorite phrases, "Don't tell God how big your storm is, tell the storm how Big Your God is!"

THANK YOU ALL again!

Love and Prayers to all,

Jon

Lemonade...

So, I had this comment left... someone has given me something. I was honored when I linked over to Amber's blog & saw that she had given me this lovely award...

Thanks, Amber!! You're so sweet to have given me this:0) So, now its my turn to share the lemonade!

Here's the rules:

1. You must link back to the person you received the award from.

2. You have to nominate 10 bloggers who are deserving of this award!

So, here's who I want to share this with...

1.) Krista

2.) Vanessa

3.) Kathy

4.) Megan

5.) Carley

6.) Ana

7.) Mina

8.) Karen

9.) Stephanie

10.) Hollie

*****

Now to update on how we're doing here:0) Despite a few coughing fits, Vaeh seems to be turning the corner on beating this silly ear/sinus infection thing. I think my bug is finally leaving to take up residence somewhere else... hopefully not via the computer to any of you (LoL)!! Hopefully everyone else is doing well!

Sick little girl:0(

So, Vaeh is really taking to this 'normal' thing. She & Gabby both had snotty noses last week, & both developed the cough that goes along with post nasal drip. But last night, Vaeh decided to spike a temp... 102.4. So of course we broke out the motrin, which took care of the fever. This morning, she didn't have a fever, but was grabbing at her right ear.

Off to the pediatrician we went. Gabby stayed home from school, so she tagged along. Vaeh did have a low grade temp when we got there, but not too bad. During the exam Dr. McNeal found fluid in both ears, plus the ever lovely sounding lungs!! Poor kiddo:0(

So, yet another round of antibiotics. They put her on omnicef, which you'd think that all pharmacies would have, right? Nope! We use the WalMart here in town, much to my dismay. When I dropped off hr scripts, they said it would be 30 minutes. So, after an hour, they still didn't have it ready! Finally someone told me that they didn't have any in stock... WHAT?!?! You mean to tell me you let me stand around here (after wasting time walking around the store) for 15 minutes & didn't have the courtesy to tell me this?! So I told them that I'd be back later (this so that I wouldn't blow my cork & just rip them a new one!!). So my Mom called before she went out to pick it up & they have the generic, but insurance won't cover generic...UGH!!!

Do you ever feel like you're being given the run around & buried at the same time?! I think I need to soak in the tub... Calgon, take me away!!

Hope everyone else is staying healthy. And if you all would, keep Elaina in your prayers. She was having surgery today, I believe they're doing her Nissen.

Serious.Life Magazine

I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published the February issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia, their daughter, Abby (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is free, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues. www.seriouslifemagazine.com