Tuesday, June 30, 2009

Angels love my Gabriella

Literally.

We have a cousin who is VERY close to many of the Anaheim Angels. I just found out by gossip that Mike Scioscia (the coach of the Angels) was wearing a Gabriella Band at the game this past weekend. SO Paul went looking online at past pictures, and it looked like some of the Angels wore Gabriella Bands on their televised game June 21, Fathers Day, against the Dodgers!

Check them out!

PhotobucketPhotobucket

PhotobucketPhotobucket

Check back later! I have 1,000 more Gabriella bands on their way to me, and will have a way to request them online by tonight!!!!!!!!!!!!

Saturday, June 27, 2009

Sweet Pea Swank

Shameless plug for my bestie! ;)

My best friend April has decided to venture out into the world of crafting and open an Etsy shop selling bows and other swanky items for little and big girls! I couldn't be more proud of her excitement in getting this running!!

I urge you to visit her online shop: SweetPeaSwank.etsy.com and see what she has going so far! She will be adding new bows and designs consistently, as well as new product lines!

And be on the prowl, because she is working on a very special design dedicated especially to Gabriella! Everyone needs a Gabriella bow, right?!

I am already the proud owner of 4 SPS bows and I wear one every day!

Feel free to 'Request a Custom Item' on the right column of her shop (you have to set up an Etsy account, but its free!) or email her at SweetPeaSwank@gmail.com for any specific styles or colors you might want!

God is Powerful, Fear Not

My sweet Gabriella attended Vacation Bible School this past week at my sisters church. Gabriella learned two very amazing things, and both she will YELL when you ask her!

"GOD IS POWERFUL" and "FEAR NOT!"

Here is my sweet princess. This picture speaks 1,000 words to me, and is probably the picture I love the most from her 4.5 years of life!

Photobucket

Echo, Echo

BOTH of the kiddos had echos yesterday... Gabriella's was to check the status of her condition (we go every 2-4 weeks) and PJ's was to rule out any genetic possibility thus far. Praise the heavens for my mother-in-law, who went with me and helped me with the kiddos. They did both echos at once, and as common sense shows us, it would have been impossible to be in both rooms at the same time!

Cutting to the chase, PJ's echo came back totally normal. Seeing as how I have learned so much about the heart and images from an Echo, I knew immediately there was no enlargement, no aortic valve issues, no irregularities. The doctor later confirmed that too, and I seriously felt a sigh of relief! We go back in 2 years to check him again and then every 5 years thereafter.

Gabriella's echo showed stable. Everything is comparable to the one we did 2 weeks ago, with a slightly higher pressure in that enlarged atrium. We scheduled another one 4 weeks from now, but I am hoping there is progress with the transplant list enough that we will be travelling to see doctors by that point.

That's enough of my news. I wanted to take a second and thank God in heaven for showing his healing powers. My friend Heather had her son Landry in October last year. When he was 5 days old, he was already seeing a cardiologist (the same as Gabriellas) for a strong murmur and symptoms he had shown in his beginning days. Over the past 8 months, they have been monitoring the 3 holes in his heart, watching for anything to happen. As of their appointment yesterday, 2 of the 3 holes are closed and the 3rd is tiny! God is awesome.

Tuesday, June 23, 2009

Waiting sucks.

I finally got a call from the nurse at Stanford/ Lucille Packard yesterday. No amazing news to post, but the doctor will be back mid-next week and review her file then. We agreed it was best to not give the file to another doctor since this doc was already familiar with her case, and waiting on his vacation was best. He will either decide he wants to see her for further review OR decide he can't do anything to repair the defect, and we will go to Loma Linda and get her on the transplant list. I am at my seats edge to get his opinion and get something rolling, because as more symptoms arise it terrifies me to think of waiting and risking something severe happening.

So many people have asked us when we are moving or where we are at. Unfortunately we are in the same exact position as we were May 14 after the triage nurse appointment. All these 'opinions' are necessary for my insurance, but a pain in the butt to wait and depend on so many other people. He case and condition are so rare that everyone wants to give their inputs.

On a more positive note, Gabriella is going to attend VBS this week! Her Aunt Kara is working VBS for their church, and she will be going along! I am so excited, because it is these kinds of things she won't be able to do for a while after her transplant.

Tuesday, June 16, 2009

Some Symptoms

Over the past week or so, we have noticed Gabriella's breathing changing. She is getting more easily tired doing basic things like playing cars with her brother or cleaning up the toys. I brought this to the nurses attention Monday morning when she called us and she fit us in for an EKG and echo later that afternoon. We went in and got the scans done, and Gabriella is really becoming a pro at laying still for the tests!

We got a call back from the nurse today with the results. It looks like the muscle function hasn't changed, but there is some additional leakage from the mitral valve that could be causing additional fluid in her lungs. They are putting her on a diuretic to help relieve that additional fluid. Of course, that poses a who new set of issues to watch for like 'accidents' and low potassium.

I spoke some more with our nurse about the progression of Gabriella's condition and the delay with the other hospitals. Turns out Stanford has yet to review the cath disc sent to them, and Loma Linda is just waiting on their opinion before they proceed with seeing her and placing her on the transplant list. Naturally, the nurse and I are going to start pushing this chart review because one symptom and change in her heart can lead to another and another. We were blessed to find this condition without having to experience a traumatic episode to discover it, and that's the way I want to continue her care. I want this whole process of review and transplant and recover to all be precautionary. We found she has a terrible diseased heart without a heart attack, ECMO, or even losing her.... and I don't want to even consider one of those things might happen because of delays.

We go back on June 26 for another Echo, and PJ is getting scanned, too. That will be after being on the diuretic for a week, so hopefully we see some improvement in the mitral valve leak.

I, on the other hand, have loved every second of being home with my babies. I have been here with Gabriella and able to monitor every breath and action she does. I know how hard it would be if I was away from her over 40 hours a week to see these changes. Despite my loss of income, we have been blessed to have all of our June bills covered and have yet to even consider using any of her fund to help us with anything. Though I have total joy being with my kids and am absorbing them as deep as possible, the internal emotions and issues I am having are overwhelming. It is indescribable really.... the intense happiness and intense struggle at the same time. I know these feelings are only going to intensify as things move on, but I know God will place people in my life to get through this, as he already has. I have been really blessed over the past couple weeks to have some amazing girls reach out with love and support and thank them for keeping up on me!!

Hopefully now that I am getting my house into order I will have more time to update and blog!

Monday, June 8, 2009

Phoenix Zoo with my monkeys

We decided to take the kids to the Phoenix Zoo yesterday, since it was planned to be under 100. If you live in Arizona, check out the culture pass! You can get free admission to so many places through your local library!! HEre are some pictures from our day! Enjoy!

PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
Photobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
Photobucket
PhotobucketPhotobucket
Photobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket

And who am I without flower pics
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket
PhotobucketPhotobucket

Play Day Saturdays

Last weekend (the first weekend of June) we went and saw two movies. Night at the Museum and UP. If you haven't seen UP, GO. I will debate ANYONE that Disney movies aren't "no-brainer kid movies". Disney movies have more underlying message, life lesson and pure intent than any other movie style. I dare anyone to try and convince me different. UP is a tragedy of sorts, but it seems all Disney movies are. But I find myself realizing that all Disney tragedies do not have bad endings. Most infact have a bigger reward, a lesson for others, and find positive amidst the negative. Kinda like our life.... seems now as though it's a tragedy but I have hope in a princess ending. Anyways- UP. If there was any movie that taught a lesson closer to what I am living right now, it's this movie. Live life as an adventure. And when life takes you on a different path than you planned, embrace that new path with a new adventure. Wow. Yes, we went and bought an adventure book after the movie, and all of our weekend excursions we have gone on will build this adventure book. I can picture those crappy days in the hospital spent looking at our adventure book and talking about when we can do it again.

This Saturday was so gorgeous here in Arizona that we had to spend the day outside. My neice graduated high school last week so we had a cookout at her house as a celebration. Paul planned a suprise waterballoon attack on the little ones and they all played ball in the backyard. It was a nice day spent with family. Most of the pictures are of PJ, but he deserves a little blog love lately!

The little man
Photobucket
Photobucket
Photobucket

Learning his future profession from daddy
Photobucket

Gorgeous girl with that hair
Photobucket

Skater
Photobucket
Photobucket
Photobucket
Photobucket
Photobucket

Search This Blog