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Wednesday, July 29, 2009

The HUMAN SLINGSHOT!

Here are some photos of Jacqueline doing the human slingshot! We are sad we didn't get a movie of her but you can tell she had a great time!



Thomas loved every minute :)
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It was amazing how fast and high we went! Yes, the Heaps family is CRAZY!

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Matt decided he should do it since the rest of us were brave enough :)

We highly recommend it!

More of our Heaps Family Reunion are coming soon!

Anyone want a ride?

 
The Heaps family really knows how to make life exciting, don't you think?
 
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Tuesday, July 28, 2009

Clinic Day

It's been 3 wonderful weeks since we have had an appointment at Primary Children's. This is the longest we have been away for a year now!

Emily's counts are stable with her WBC at 3000, and her ANC at 1500. The only thing that is troubling is her weight (of course). She weighed in at at 17.1 kilograms which is down from 17.4 last time. This isn't a huge drop but the Dr. decided to be concerned this week. (Lucky me)

The Dr. looked at me and said, "She keeps losing weight; she is on Concerta."

I wanted to scream at him! We took her off her ADHD med for over 2 months this spring and her eating didn't change at all. We decided it was in her best interest AND our best interest to put her back on the medicine. Life is much better this way :)
I have talked to other doctors who disagree with Dr. Pulsipher in saying they don't believe this is what is causing Emily to have no appetite. I also know many other SCID kids with the same issues. Their solution is a feeding tube. We are trying to avoid this route!

My opinion is that this is his way of putting the blame on anyone but him. This way it isn't his problem, it's the neglectful parents that are causing it. It is easier to blame it on a medicine instead of taking the time to search for the real answer.

I know I have talked about this so many times but I am feeling so frustrated and confused. The Dr. explained that if she doesn't gain weight her immune system has no chance of fighting the way it needs to. 
For now, she is back on the weight enhancing med that only works while she is on it, gives her stomach aches, and doesn't solve the problem. It is better than a feeding tube though. I am praying for answers...

On a more positive note,
Emily has the thumbs up to go back to school this year! They told me to expect her to get lots of infections. We are talking about Emily here; she is a fighter, I won't be surprised if she stays healthier than all of us!

2nd grade watch out!!! 

Monday, July 20, 2009

Pinewood Derby

 
Thomas had a great time with his dad creating his car for the pinewood derby.  I am very grateful he didn't need my help!

Thomas didn't win 1st place but he did win the award for "Best use of Paint" This beats 1st place any day! :)

It was a great night and all the boys had a great time!
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Saturday madness

 
The Buhrleys are in town! Jacqueline was at Grandma and Grandpa's house bright and early since she just happened to finish her run there..(how convenient!) Gracie was the only one awake but she was ready to SWING! 
Jac went with Mandi and got their hair done by the pro Joslyn! She does such a great job. I can't wait for her to color my hair!
Emily couldn't stand having to wait at home for Thomas to finish his soccer practice. She picked out his clothes and packed them telling me "Thomas can take a shower at Grandmas!"
The rest of the day was full of playing the game "Farkel" and creating... LOTS of creating....Sorry Grandma and Grandpa :) I know we owe you lots of TAPE!
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Thursday, July 16, 2009

Fun with Nicki and Davin

 
Sleepovers are extra special at our house since they rarely happen. We were very spoiled to get Nicki and Davin to stay with us. Nicki even gave up her scholar club to be with us! Davin was very patient with Leo since he followed him everywhere he went. Too bad Jeff is allergic to dogs because Davin is a pro!

You never know what creative things these kids will come up with, their minds go a hundred miles an hour :) This was just one of their creations. 

We really need to do this more often! Cousins are so much FUN!
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Tuesday, July 14, 2009

SWIM DAY!

 
It is official, Emily went to a real swimming pool! We were extra lucky to have our cousin Davin come along for the fun. It is so great to be able to do one of our favorite summer activities TOGETHER! (Maybe I will get a little color after all!)

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Do you think Emily is enjoying herself?? She was like this the whole time.
THIS IS THE LIFE :)

Sunday, July 12, 2009

It's time!

I was sitting with the kids in the Relief Society room for Sacrament meeting and I decided that it was time. I looked at the kids and said, "Let's go sit in the chapel" 
"Will Emily need to wear a mask?"
"NOPE!"
They looked at me like I was crazy but they followed, well I had to drag Emily but what do you expect?

I did another crazy thing. I told Emily today she would be going to primary! She was very nervous but was immediately comforted knowing she had Sister Sump and Cambry by her side. After 10 minutes of holding on to both of them she was finally able to relax and did great!One of the mom's told me she even smiled when they called her up during sharing time. 

I know the doctors haven't given the green light but knowing she is most likely going back to school in August I want to do things one step at a time. If we throw everything at her at once it will be too overwhelming for her and me!

It feels good so I am going with it :)

Ward Campout

 
Camping is always fun but it's extra fun when you have the whole ward along! Even though we didn't actually camp, Matt cooked a YUMMY meal in the dutch oven and he even made a cobbler for dessert. I think we should go camping more often!

The kids had a great time and Emily TRIED not to touch the dirt(who are we kidding?) Matt and I had a great time too, we even got in on the pine cone fight all the kids were having. When I woke up the next morning there were sticks and pieces of pine cone all over my pillow. Can you believe the kids would go after innocent me? 

We have the best ward ever! Thanks everyone
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It's swim time!

 
"Mom, can I get wet today? can I go through the sprinklers? The slip-n-slide?...YAHOO"

"I can't believe I get to go swimming, I haven't ever been in my WHOLE LIFE" (one year does seem like forever for a child!)

Life is good isn't it?
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Wednesday, July 8, 2009

HAPPY DAY!!

 
Emily always feels comfort from her big Sis. I wasn't surprised to find them sleeping together last night. Even though she was excited to have her line out, she was nervous too.
We had to wait for 3 hours before going into surgery but Emily enjoyed having Grandma there to help entertain her. 
"Grandma, just call your boss and see if you can go with your granddaughter to the hospital." How could Grandma resist?
 
The surgery went perfectly. It only took about 15 minutes. After waking up, Emily enjoyed her slushy, Cheetos and watching "Wishbone" on TV.

Today seems so surreal to me. It's hard to believe that she has come so far. I am feeling nervous and excited all at the same time. I am sure you will hear that a lot from me when she goes back to church, when she goes to school, etc. Is she really going to have a working immune system? Yes, I think she really is!

I know I will be one of those mom's that tell her all about "When you were little and had a bone marrow transplant..." She will probably roll her eyes and say, "Yes Mom, I know, I am a miracle..."  

The truth is, she really is a MIRACLE! THANK GOODNESS FOR MIRACLES!
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Tuesday, July 7, 2009

Ya Hoo!!!

Emily went to clinic yesterday because her ears are bothering her. It turned out to be a very successful visit!

She is doing great off her blood pressure medicine and her magnesium which means....She gets to have her central line out! This is so HUGE! We are so happy for her. She will finally be able to take baths without worrying about getting it wet and best of all; she will be able to go swimming!

Emily's WBC is 3100 and her ANC is 1900 which are both UP! Her IGG level is really high too which is such great news to think that she might not need to have IVIG for the rest of her life. Yes, this is a little early to be able to tell but for now we are SO HAPPY WITH HER PROGRESS!

It really feels like we are nearing the end. I am feeling more confident that all of this was worth it. She has been so blessed, How could we EVER DENY  there is a GOD watching over us? This little girl is living proof!

We couldn't have made it through this last year without all of your prayers, faith, and support.

It is hard to imagine not having to worry so much about everything she touches and if people around her are well or not. It is going to be quite the adjustment. I think I am up for the challenge :) I know Emily is!

Sunday, July 5, 2009

Justin and Beth

 
Justin came to visit with his girlfriend Beth. They are both going to Dental school in Baltimore. It was great to see Justin and to finally meet the person we have been hearing so much about. 

I am sure she was pretty overwhelmed by all of us since she has one brother and no neices and nephews, but she handled us well! The true test is if she dares come back or not! Hopefully we didn't scare her too much :) 

We are hoping it won't be so long this time between visits...Baltimore is way TOO FAR!  We love you!
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HAPPY 4th OF JULY!

We had a great time with the Whitings playing games
 
Going to all the festivities in Prov0 
 
As you can see, it was quite the event!
 
We enjoyed YUMMY food provided by Megan, Beth and Matt
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Last but not least...

 
Who could celebrate the 4th without a great movie and FIREWORKS?!
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Freedom Run

 
There is nothing quite like running a race with people you love!
Alice, Ryan, and Alex were able to experience this for the first time. I think they're hooked!
Matt, Jacqueline, Jessica and I ran side by side pushing each other through all the uphill climbs. 
Jacqueline sprinted ahead during the last mile leaving us and all the parade goers in awe of her speed!
It is so great to have Grandma run with us. She puts all the other "seniors" to shame!
It's official, the Freedom Run is a tradition...We'll see you all next year!
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Thursday, July 2, 2009

History Quest

 
Each year Lehi City has Rodeo Days which brings a week of fun activities.
The Hutchings museum had a History Quest. We decided to take on the challenge. It was a series of different clues placed at different locations and websites. I was ready to call it quits with the first riddle...this has never been my specialty. You should have seen Jacqueline and Thomas! Their minds were racing. They found the first clue and we were off! After 2 days a lot of brain work, guessing, laughing, driving around and luck we finished in 10th place. The person in charge told us she wasn't sure how we got as far as we did since we didn't understand the clues as they were intended. We just found them in our own way :)
For days we have laughed whenever we think about it because we seriously don't know how we figured it all out. We had such a great time and we even got a pretty great prize out it. the kids have already told Matt that he is doing it with us next year.  With Matt's brain work just think of the possibilities!