MIA

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April is a crazy month in our house, thus the lack of posts. To all who have so sweetly emailed me, we are doing excellent and here is a tiny peek at some of the fun going on.

The littles are doing great in school finishing up the school year. Both of Ivy's teachers have told me that Ivy seems to have more energy and less need for rests and snacks than they have ever seen from her. This makes us so happy!

The sweet wee ones had a fun date with daddy at school last weekend. Since there are 2 children at the same school they even got to bring ~bubby~ (big brother Brady) along for the date!

              
        Daddy being smothered with kisses by his          sweet little treasures!

               
This boy LOVES his little sisters BIG!!!! He would do anything for them. In fact he does... They own his heart!!!

 Our sweet Cassidy turns 18 tomorrow. I can hardly believe it! My tiny little girl with long blonde ringlets and ruffly dresses has turned in to a beautiful young woman. Her prom was last weekend and her sisters told everyone that Princess Cassidy was going to the Royal Ball. 

 Here she is with her best friend, Miss K.

               

           And with the very lucky Prince R

We will be wrapping up our school year before we know it. We are excited to celebrate the resurrection of our Lord and Savior this Sunday and hope that you are too! We have several more dance shows and competitions, 2 more birthdays, graduation and then... It's SUMMER! The Sammons house has one more kiddo starting college, and one starting kindergarden next school year!! 3 of our kids are going on mission/serving trips out of the country this summer. Rylee, our soon to be 21 year old is heading to Fiji for 2 weeks and Brady and Cassidy are going to China for 3 weeks. I am so excited for all of them!!!


We see cardiology for Ivy's regular echo and check up next Tuesday. I think we will be discussing moving forward with a stronger PH med for Ivy. Tracleer-Bosentan is what I think they are considering. I'm not going to even think about it until it is really time. We are very comfortable in our current routine but we will change whatever we need to, anything for our little firecracker!!!

So, life is good! Hard work, but very very good! We do not take one single good day for granted! 

And this is the promise which He Himself made to us: eternal life. 1 john 2:25

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hip hip hooray!

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Today was Ivy's first day OFF Sildenofil!

Sildenofil is her medication for pulmonary hypertension. We need her off of this drug for a month before measuring her pressures again in her February heart catheterization. This is a HUGE step for her. This mama is nervous!!! I already feel like I see effects of her not being on it today and I could be completely phsyco but I'm just being honest. Her color looked different (bluish), her walk was cautious, her energy was low and appetite was small. I am holding on to hope that her body is adjusting and she will continue to thrive without it. None the less, my eyes are wide open and my mama antennas are pulled as high as they can go. We have an echo next week, labs the following and then NOTHING until we head to California in early February! 

The weather is gorgeous here! I think that's not the case for many of you so enjoy these photos of our girls enjoying their favorite Christmas gift... snow in the driveway, while all the grass is green in the background! We are far from snowed in here :)

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JOYFUL

Pin It I said I wouldn't be back on today.... But sometimes things change. And I didn't want to keep anyone hanging when here we are just sitting in front of Little Einstein's. Ivy with both eyes closed, for the moment, exhausted from this long day. Me with huge wide eyes, living on caffeine today! Filled with joy and relief to be passed this procedure and one day closer to having my family together again!
I finally got my eyes and hands on little peanut at about 1:30 this afternoon. She had blood coming out of her mouth as she tried calling out for me. It looks like they must have cut her somewhere when they intubated or extubated her. I have not found the source yet but it continues to cause bleeding. She wanted to sit up... you can't do that for 4-6 hours so we had some, "Somebody help me! Get me outta here! Help!!" Going on. Once she understood what we were waiting for and why, she calmed down and being very loopy from the meds still she started calling out to all the nurses! "Hi friend! You doing ok? Ya? You are? Ok! 
Then moves on to the next nurse. Hilarious! Had the nurses in tears laughing!
Then she suddenly started bleeding from every place they attempted to put an IV this morning. Oozing blood everywhere.  They attempted IV's in each foot, each arm, one hand, one foot. All were bleeding. They finally got an EJ in her neck (So uncomfortable!) and that was bleeding too. Her mouth, her nose, lots of blood. They decided to turn off the heparin drip early and put her back on her coumadin tonight. Then she ended up needing a blood transfusion so we are actually in the process of that right now. They ran labs to check INR and she was 8.5! No wonder she's oozing everywhere! 
She ate a few cheetos, drank a lot of water and seems to be uncomfortable and anxious. She is on oxygen for her sats right now. When we take her off she drops to the high 60's so she clearly has some recovery to do tonight, the cath was long and took a toll on the little peanut. Any way, the end of this update is the part I'm so excited to share!
Ivy's nurse from the transplant team came in to see me tonight. While she did not speak of her overall right or left side function or the future as far as Ivy's heart goes, they are saving that for our appointment with the whole team on Thursday. She came to visit us tonight because she could not wait to tell me that Ivy's pressures are NEAR NORMAL! Her pulmonary hypertension has dropped more drastically than they ever experienced in just 3 months and they are ecstatic! She will no longer require oxygen!!! Did you hear that.... coming home with NOTHING hooked to her! She will stay on Sildenofil until her next cath (no date for that as of yet but guessing 3 months from today) and then wean off right before that cath to measure true pressures with no assistance from the medication. This crazy expensive medication is not covered by our insurance so as absolutely out of control happy happy happy as I am for baby girl, I have to be honest and tell you what a financial relief that will also be to Bryan and I. 
The news on her coronary artery is that there is a suit has scar tissue growing all around it and the scar tissue has basically pushed the coronary artery to a nearly closed surgical clip right next to her RCA. Scar tissue grows around foreign objects and this scar tissue that has grown has caused her coronary to be nearly closed in one area. It is not the area with the holes. It is lower and it was successfully ballooned today. Since she is so young they felt that a stint was not an option but it will likely need to be ballooned again during her next cath. The great news is that after it was ballooned, it showed better flow! 
Alright, back to cuddling my little peanut! She is waking up and she has a tummy ache :(

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer. Pin It