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Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Monday, July 21, 2014

One more week.

With just one more week of summer for the kids we are trying to fit in the last hurrah... The nice thing is that C track is just three weeks on and we get 2nd summer. That is sort of like 2nd breakfast...(if you don't read much that is a Lord of the Ring reference) 
I felt as though we have managed to squeeze in some things.... 
I got a bike! Eeeeeeepp! It is so fun to ride. I have been out....once... I think about going out more, but then I realize I will just have to do it when I can. Jeff on the other hand is a cycling crazy man. He has had a ride/ride/tour the last 4 weekends in a row. The last one was a triathlon. He rode the bike portion as part of a relay. Their relay team came in 1st place. That got him hooked and he is planning on learning how to swim appropriately in order to do a triathlon. Besides all that fun, he has or will have Oakcrest, girlies camp, and trek... Busy busy! 

Preslee returned from her LDS mission! She is fantastic! I am so happy to have her home and proud of her and her efforts. 
We went to hear her speak today. She did such a wonderful job. 
What a nut. 
Speaking of this nut....
Gator has been very very tired lately. He has needed naps and lots of rests. This is part of the wearing down that happens when his heart is working so hard but not well. He gives himself lots of breaks from his oxygen, I am constantly trying to get him to put it back on. I finally felt like I needed to back my threats and taped it to his face today. I know it's inconvenient but it helps so much. Also, he has started Bortizamib. It is supposed to lower his high antibodies. While deciding if we would try this medication, Jeff and I couldn't make a firm decision. We had educated ourselves, asked questions, understood the side effects and understood the risk that it may not work. We finally decided we needed to ask Gator what he wanted to do. Instantly he said he wanted to try it. When he said this I started to cry. I was so impressed that he isn't giving up. While it hasn't been fun.... It hasn't been horrible either. The medication is given sub-q... We premedicate and wait 1/2 hour... Then they give it... Then we have to wait two hours as he is monitored. That's it! It lowers his immune system, so we are trying to avoid germs. I don't feel like I have ever been the fanatic germ-a-phobe... I am cautious.... Not freaky... 
If you are wondering, I am starting to slide into the freaky side of things.
 The last bit of news is... He is needing more and more help. One way for him to feel a little better is to up his milranone. That requires a hospital admittance. We are trying to let him finish out his summer before that happens. We are making sure he gets plenty of opportunity to nap. He is on a cocktail of meds... four pills: Digoxin, Aldactone, Iron, Lasix, One gummie vitamin, 2 injections of Lovenox each day, a constant milranone and heparin infusion, oxygen 24/7 at one liter and Brotizamib every four days. Toss in a little prednisone and Tylenol for pre-Brotiz treatment and Zofran for upset tummy. On a side note. He is working on a loose tooth. He told me today that he wants it to come out so the parent tooth can come in. 
Little Miss had her 18 month well check. She is growing beautifully. She is smarter than we can stand. She has also begun the tantrum throwing stage. Full rage comes out of this little person. She throws herself on the ground, goes all floppy fish if you are holding her, yells "top it", hits, oh man she is naughty. I have heard of pre-teen but has anyone ever heard of pre-terrible twos? Now affectionately called PTT.
We found out May is having some issues with her NEHI. Her pediatrician took one look at her retracting and ordered and xray. We have increased her oxygen and also started giving her nebs treatments 2xs a day, and her inhaler 2xs a day. Just like brother she loves to unhook herself from her tether.
 I am in some serious trouble with this one. She has learned to climb/scale furniture. I was combing my hair for two seconds and she has climbed onto the kitchen table. I got this picture while I was dripping wet myself. 
Eden is getting so excited to start preschool. She asks everyday if it is tomorrow. She is going to love it! 

We have slowly been school shopping for Ry. So fun and so hard all wrapped into one. She defiantly has her opinion on what she will wear. She is a fantastic deal finder, which thrills this momma to no end. 

Me? Well... I am good! 







Thursday, July 10, 2014

Real summer... As opposed to fake summer??


"This feels like real summer" 
I am pretty sure those words came out of my mouth. 
Life changing all the time has made me think about what it is I expect. I think I expect our family to never change and that we will have the same experiances as I did growing up. I get so caught up in entertaining my kids that I forget to let them play in the yard, get freckles on their noses, watch summer TV till their brains turn to mush, have friends over, get stinky feet from hot shoes, and pick raspberries right in our very own backyard. Then eat them by the handfuls. After, wash our hands in the hose. 


















Wednesday, July 9, 2014

Two ways to have fun

We walked to the new park. The park is built for all abilities, which means it is accesable for wheel chairs, kids with walkers, or a wagon stuffed with two kids on oxygen... 
May loves the swings. She says "a din" and makes me pretend to do an under dog. We figured if we hook her tank to the swing she can go much higher... 

Not so high

Underdog status


More carnival photo's

 This is Gator and Marti Pre-race


 Some Heart mommas
 Grandma and May
 Munchkinradio.com
A whole bunch of awesome helpers!
























 Gator and Teags



 Troy Jensen getting Dunked
 Having some lunch
 Heart buddy Thatcher
 Heart momma's Tami and Jill...

 Alex's Kindergarten teacher.

Buddy Thatcher at Teagan's benefit... Thatcher and Teag and Alex have been buddies since they were teeny babies... We are so glad we have such cute and sweet friends.