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Tuesday, April 22, 2014

Counting more blessings!

Pin It It is such a dream come true to have so many posts of good news to blog about. One year ago we were in the hospital hearing the first news of Ivy needing a new heart. I was planning her birthday party, a special celebration honoring our baby girl, our hero, and rejoicing of the incredibly difficult year she had survived. Then like a ton of bricks crashing down, she gets this uncontrollable edema in her belly and her echo shows extreme decline in heart function. We were admitted straight from our doctors appointment. For the second year in a row I found myself in the hospital for our daughter Cassidy's birthday and for the second year in a row we made it out of the hospital for Ivy Joy's birthday by just the skin of our teeth. We would celebrate on her special day and then we would head to Stanford to start transplant evaluation.
Fast forward one year...
I am planning Ivy's 4th Birthday!!!! She turned 2, she turned 3, and now, she is turning 4. I know, it seems silly, but these years are huge miracles and even more so, they are gifts! Today we spent 3 hours with our cardiologist. We discussed all the details of her Cath last month. She had her scheduled Echo. We made some med changes. And we marveled in the miracle of this child! She is GROWING!! I mean really really growing! She has a pretty full face that could use some diuretics right now and we did start those today, but her body, it is real growth!! Not water... it's real baby fat and 1.5 inches of new height!! She is active and happy and just such a ball of fun!!! 
Her heart function continues to show improvement. And as long as it stays on that curve, even if it is a slow traveling curve, it is awesome. Her increased Pulmonary Hypertension is concerning, but they still feel that as her heart function continues to improve, so will her lungs. They have decided to keep her on her current PH medication, increasing the dose as she grows. WE ARE REJOICING!!! THINGS ARE SO GOOD! 


On to Easter :) The hunt! Ivy's pants were falling off. They were a sweet hand me up from a friend who's daughter wore them like 30 years ago (not kidding!) Isn't that amazing? They are a 12 months but the waist was just too big so she looks like she has no feet in this picture. 



 Lexi as an egg head! She found all the big eggs and said, "Daddy, you can find the rest, oh, and good luck!" 




















                                                     Her squishy face!
 Ellie, my oldest daughters dog. Sweetest doggy ever! Loves coming to our house and playing with the littles.





 Thank you everyone for continuing to pray for Ivy's health. We love you all!



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Wednesday, April 16, 2014

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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Wednesday, March 19, 2014

Different than we imagined, and even more beautiful

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Thank you Make~A~Wish
We were blessed with a week together! A week of loving up our kids, spending quality time with our bigs, and praying for Ivy who declined as soon as we arrived, to be blessed with a magical memory a day!



 In the realm of things, and considering that this trip was a gift and a wish come true, I reminded myself continually that even though the trip was different than we'd envisioned due to precious Ivy's reaction to the flight, She was ABLE to take this trip! She is not currently waiting for a heart~ her own heart IS working! She has been home with us for 2 YEARS after being deemed TERMINAL! She has blessed the socks off of our family! We DO have so much to give thanks for!

At the time of the trip, no one was concerned about the flight. The doctors didn't even flinch an eye at her flying to Florida. But the last time she flew, she WAS still on oxygen. 

We arrived at Give Kids The World Village on Saturday. 







Below are photos of Merry the Rabbit. She comes to tuck the kids in to bed when they stay at Give Kids the World. Ivy felt too icky to be interested but Lexi loved her.





Our sweet Lexi is the most mellow, understanding, patient 5 year old I've ever met. It was so beautiful to see her delighting in every part of this day. Because we've ALL been through a lot. Perhaps not physically, but she has handled a great deal for such a little one. At the end of the day, she said, this had been the best day ever! A limo picked me up, my whole family is together, Ivy and I get to sleep in the same room all week, and a bunny rabbit put me to bed!
God ended the day with a blessing for the parents. A reminder that this family was hand crafted by Him and He knew each and every one of us and how we would all fit perfectly together. And how very very blessed we are!

Sunday morning we had reservations for breakfast with the princesses. These reservations were so hard for us to get. I must have called 15 times trying to make this happen! 
Ivy was not going to enjoy it feeling like she was. We Canceled it. 
We were supposed to meet Anna and Elsa after that. We postponed that. We did not want to waist this opportunity while Ivy was clearly not feeling well. We would wait it out until she was back to herself!
So at this point all plans changed, reservations were canceled as they came up, and we just waited it out. Throughout the entire week, we didn't even realize it was the flight that caused Ivy to turn so quickly. 

She seemed fine on the plane. (But she was asleep...)

It was in the first night there that she showed us she was not feeling well and it got worse instead of better.  Coughing and coughing this unique uncontrollable unproductive cough that resembled the sound you hear coming from a very old woman who had been a chain smoker her entire life. (Makes sense now..)


We were all praying that she would get rid of this new ~cold~, stop this strange cough and she would be herself. We suspected a UTI at the same time so we got her on antibiotics. The symptoms of that left quickly but she continued to get more and more puffy (something that heart kiddos do when they are ill) and had zero energy. 

I decided to ask God for something different. Whatever was going on, she clearly needed time to get better.  
Our hearts broke for her. I almost curled up and had a pity party. And then I reminded myself how blessed we are! We were together. She had everyone here to dote on her. We had access to all she had wished for and when the time was right, we would get her there in a heartbeat! 

So we changed our focus. We regrouped. We set the new pace, a pace that fits in right below super slow. 
And I prayed. I asked God for just a blessing a day. 
Just one delightful thing for her to find joy in and feel good enough to make one special memory each day.

So after spending Sunday sitting around doting on the girls and letting Ivy rest, we decided to take the family to the Magic kingdom for the 3pm parade. 

Little did we know this was opening day for this brand new parade. Little did we know that Anna and Elsa were in this parade. It was so hot and humid on this particular day. But she made it to the parade, and it was beautiful! Anna and Elsa looked right at the girls and blew a kiss. 

We headed right out of the park after the parade. 
This was our beautiful blessing for the day.
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On Monday we attempted an afternoon trip to Universal Studios. We had 3 day passes to Disney Parks and we didn't want to waste all our days at once in case Ivy ended up feeling better by the last day. We were in and out of Universal in what seemed like minutes. Ivy was too short for all of the rides and she was not impressed with Dr Suess World or anything that squirted water. 

                        Lexi in Suess world.


The big kids felt so sad for her and insisted they didn't want to do anything without her so we headed back to Give Kids The World. The Villa we were staying in was situated right across from a beautiful playground set up like the game Candy Land. When we got back to the Village she mustered up enough energy to ask to swing at the playground. She was so happy to have her big sister Rylee at her every command. She adores her big sisters and is so sad every morning when they leave for school. So a whole week of the big girls NOT going off to school made for a very happy girl. 



Our blessings for the day, swinging for a short time on the Candy Land playground and cuddling all day with big sisters.
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Tuesday morning Ivy slept in.  Her cough kept her up and down all night. I asked Bryan to take our big kids out for the day to enjoy all the fast rides and the super cool Harry Potter World. 





They had a great time with dad!! 

I had hoped that we could get out to the Merry Go Round and ride the train right there at the Village but that didn't happen, Ivy slept most of the day making up for the rough night she'd had. Lexi was an angel staying by her side all day. 

On this night we had reservations for dinner with Cinderella! Since she had slept so much I figured we could keep the reservation. She said she wanted to go. I am SO GLAD we did!! She loved everything about it!









Dinner with Cinderella and Prince Charming! This was the special blessing of the day!
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Wednesday early afternoon we could see that Ivy was really beginning to turn a corner. Her cough was keeping her up less at night and she was walking a bit more. We headed to Epcot late morning. It was time to see Anna and Elsa! 

Her WISH!




It was as if Anna knew what we went through to get to her.




                               
                                 
Ivy was sound asleep until just seconds before this moment. I woke her up and told her we were in Arendelle! Anna knew nothing. But, something made her show our daughter PURE JOY! And tender sweet love. And 10 solid minutes of cuddles and conversation and playful visiting. Both girls were in Frozen heaven. The Arendelle Princesses treated the Sammons Princesses like royalty. They told the girls they too used to dress alike as little princesses! Lexi and Ivy thought that was so cool! 











I think it goes without saying, but this was the special blessing of the day!

Ivy still had some energy left after this so we spent some magical time at the magic kingdom riding rides visiting the characters, and seeing ALL of the princesses! 






          
                                   Tuckered out!
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Thursday morning we had breakfast with Pooh and Tigger and some very treasured friends of ours from New York. 









We planned to take the little ones to Disney Junior Live and then see how everyone was feeling after that. They did love Disney Junior Live.


 However, meeting up with our dear friends and spending the afternoon just playing in the pool and sand and roasting marshmallows with them proved to be the perfect way to finish out the trip. The bigs went off with the dads to ride rides and the little went off with the moms to the Grand Floridian. 










Ivy was acting more and more herself with every passing minute. 

She was finally getting over this cough.. COLD.... OR WHAT WE THOUGHT UP UNTIL NOW WAS A.. cold!

Our blessing for today, an afternoon making memories with our dear friends.
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Friday was our last day. Our flight was to leave at 5pm so we spent the day packing up and doing all the things at the village that we had not been able to do with such a sick girl.

Merry Go round



Having a special star with her name on it placed in the castle of miracles by a fairy! 

The entire ceiling is covered with the little gold stars of all wish kids. 



Making a real pillow at the weeping pillow tree!









               Swimming and eating ice cream!



Our blessing of the day, a healthier little girl making memories at Give Kids The World!
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It was not until Ivy began coughing and gasping as we flew home This time during the flight.. that it clicked! 
She was not suffering from yet another cold. She was suffering from lack of oxygen. She needed oxygen on the plane! I won't go in to details, we are home and safe. She is doing magnificent. 48 hours after getting home she is running fast again, she looks fantastic. Again, so grateful.

Raising Ivy is a gift. Yes, its work, its always full of surprises, its often scary, but it is FULL of treasure. Someone on the plane said to me that it was such an amazing thing that we took on such a burden. 
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Honestly, I don't get mad at things like that. It was not meant to hurt. But I will take it as an opportunity to share that she in not a burden. She's our daughter and the journey she has taken us on as we stand by her side brings much desire and far more discipline to keep our eyes and hearts set on Jesus than a life without her. Such an honor to be a parent, isn't it? Such a blessing to be entrusted with these beautiful children!!! 
Thank you Make A Wish for giving us this time with our family and making our little girls WISH COME TRUE! Pin It
 
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