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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!

Wednesday, October 29, 2014

The results from reflections

My two budding artists are thrilled by the outcome of their hard work..
Ryleigh received Award of Excellence for her Photo. Which she took with her phone. She is thrilled beyond words. It will move onto regions. Her faux stained glass received Award of Merrit. Her Visual Arts painting did not place but she was thrilled to see it on display. 

Alex's literature piece won Award of Excellance and will move onto region. He also received Award of Excellence for his Visual Arts painting, it too will move on. His Photo did not place. He loved showing off his favorite car anyway. 

Eden's Visual Art Painting did not place. It is tricky for a (at the time) 3 year old to be judged with kids in third grade. It was here very first year entering and I am proud of her for putting her work out there. Her piece was entitled 'Pink'.. As in the world would be a better place if there was more pink.... Totally! 
Next year she wants to enter all of the categories. Heaven help me! Maybe I will have her pick 3. 

Monday, October 27, 2014

Much has happened.. Well sort of...

I am constantly in a state of motion, trying desperately to do something or get something done... So I had the last post written forever ago and realized it "failed to publish"... Now it should be up. 
That caught you up to discharge day. Life has been full of mostly the same crazy.. 
The never ending oxygen battle with two kids. Both want to be free of their tethers and both need it for their health and well being. I would love to ditch it all, vacuuming would certainly be less of an Olympic event. However, I know the benefits for both these two O2 dependants, so it stays, and we battle on. I usually win these battles because I pull the "because I am the mom and I say so" card. MayLee is such a sweet little flower-finding-lip-sucker.. She sucks her lower lip instead of her thumb, finger, and never a binki. 


We have been working on reflections entries and we are hoping for something to move onto regions. Here, Ry is working on her faux stained glass 3D. Titled: Love in the World (I think) The theme for 2014 is, The world would be a better place if.... She also turned in a visual art piece and a photograph. Alex did VA, Photo, which he is working on in the picture.. Titled: More Fun, and a literature piece. His writing was about heart donation. There is a part of the entry form that asks you to write your artistic process. He didn't understand what that meant for literature until I said "what made you think about this" and he put "I am living it". Enough said! 
Cross your fingers and toes that the kids did well. 
Olaf was a huge hit at activity days Daddy daughter pumpkin carving night.. I think he looks awesome! It has been kind of warm and it's sad to say he melted/wilted... 

Eden got two incredible costumes for her birthday and has hardly been clad in anything else. This selfie proves her obsession. 
Microsoft played video games to help raise money for the Children's Miracle Foundation. They asked us to come play too. The older kids had a blast.. MayLee on the other hand was not a huge fan.. 


We will keep her any way!! 

Gator's health is good right now. We are super happy about that. He has been freed to eat his normal diet but has been restricted on his fluid intake to 1 liter a day. That isn't much and he is pretty thirsty. Dylan(home nurse) suggested some hard candies to keep his mouth occupied. On top of that we want Gatoraid for the electrolytes or milk for the good calories but limit water. Very very hard. 
He has loved having his teacher over for class and he had his first French lesson. He said he understood a lot of what she was saying but couldn't form correct responses. I love what our school is doing for us. We know how amazing we have it too. Many of our friends fight with their schools and districts. Ours has been accommodating, patient, understanding, and just plain old nice. You all want to move here just so you can have a Mr. Pullan, Miss Bobbi, Mrs. Heinecke, Mrs. Shimp, Mme. Louk, Mr. Tenney, Ms. Brown, and Mr. Baudry. Can you see the size of just our school team? Yeah, it pretty much rocks! 
There is so much good in the world. Today we were shopping for Eden's birthday party supplies. They were on the next isle over. A conversation started with Gator asking a family if they were getting things for a friend in the hospital. Sure enough they were and he said, "oh man I hope he gets better" then Eden says "gator goes there all the time, he has half a heart, but he's waiting for a new one" I am worried they are overwhelming this sweet family with the what's and how's of it all, I push my cart around to them with MayLee toddling alongside the cart because she refuses to be in it. The mom looks at me, but smiles warmly and says "that must be a long wait". I laugh embarrassed.. I wasn't even sure what I said but something to the effect of.. we are together and not in the hospital, and them doing something for someone who is there is neat... And I hope they get better soon. That was it... Until check out and the cashier pulls out a wad of bills and says that the family left it for us. 
Their thoughtfulness was beyond generous. They get double good deed points. 

Discharged

Our major goals while at the hospital was to extend our home time. I joked with everyone that this was the dry run for when Gator gets his healthy heart. Most of the time spent hanging out with Gator one on one.. He loves room service so much.. They try super hard to make just what he asks for.. This is lunchables that we created.. 
He got some amazing things to pass the time. One of his very favorite things was a Snoopy Snow Cone Machine.. He invited everyone to get a homemade snow cone for free. I loved that he collected the snow in a barf bowl.. Hahaha.. Don't worry we washed it first. 



Gator made play dough guys too.. 

Yesterday we got everything all worked out and he was able to come home. 
Thank you all for the continued prayers. Sometimes I worry that people get tired of us constantly needing them. But, know that we are so incredibly grateful. 






Monday, October 13, 2014

Wow what a week!


Some weeks tend to make me tired... I take that back, exhausted, discribes it even better. Tuesday Gator woke up to his PICC dressing being ripped off in the night. We had to have it replaced immediatly, Wednesday I took Ry and Eden to their well check visit. Both are growing beautifully. Ry was incredibly embarrassed about the whole thing. Tinkle in a cup???? Are you kidding me??? This is sick people.. She survived. Eden got 4 immunizations. Bless her little heart she was not happy about those either. Then, just because we always need a little more excitement in our lives, I had Doc Mashkuri check out a big ol bump on Gator boy's inner thigh.. We had to drain that sucker and it was as painful as it sounds. We cultured it to see exactly what we were working with and he was put on an antibiotic. The next day was clinic and when we talked about the offending hunk-a-zit-thing it made Tx squirm and check the cultures. Staph!! We changed his antibiotic to a stronger attacker. Friday morning Gator was bothered by chest pain for three hours. What an annoying thing, especially since he had been planning a super bodacious dude camp out with Papa C, the uncles, Wells, and daddy. He must have conviced himself that he was fine because he had a really great time till the next morning at breakfast the pain came back. I brought him to the hospital while Eden and Ry went to Idaho and May and daddy hung out. Gator was admitted to the hospital. He needed to be watched a little closer. I had a ticket to a conference I was super excited to see. It was such a refreshing celebration of trials and it buoyed me up spiritually. Meg Johnson, Hank Smith, and John Bytheway were the speakers.. The only thing that went wrong is... During the very last speaker who happen to be Hank Smith I had my phone on silent but down near my purse so I can watch it. It starts to ring and it's the hospital. About 49 different thoughts went through my head all at one time.. He's really sick, he's dead, they have a new heart for him.. You know little things like that. I contemplated not picking up. I knew how rude I would look. I was on the fourth row right in the middle.. I just had to make sure all was well.. I got up and ran out.. Mortified!!!! They had a few questions about medications and wanted to make sure everything was good.. Whew!!! 
I waited in an incredibly long line to apologize to Hank Smith for running out like that. He was super nice and wasn't even mad. 

Sunday was perfect.. Gator and I and miss MayLee the wiggle. Went to the branch at PCH.. A-mazing!!!! 30 minutes is the whole meeting. Pfffffsshhh! I could do that time frame anytime. They don't need it to be longer because it's like taking the spirit and magnifying by like 10,000. I have already professed that I am sure that angles walk the halls of the hospital. Well, where do you think they go for church? Yeah it's that good. If you are ever at the hospital on a Sunday.. Starts at 10:30 and you may come in your PJ's and slippers. They have never turned Gator away for wearing his. Gator also had a primary lesson from his amazing new primary teacher Sister Christianson. Bro C also came up. She brought Gator's primary program part. We are coming up with a way for him to be included even if he is in the hospital. Don't you love technology? With a CD of the songs to practice we are excited to be part of it. It is amazing to be thought of. Gator had another Bortisamib treatment. His PRA went slightly up..69... We can still rejoice because it's not all the way back up and hopefully the meds will knock it back down again. 
We also found out his BNP went up to 1000 from the last check it was 600. 

Question: What is a BNP blood test, and should it be done on everyone with heart failure?

Answer: A B-Type natriuretic peptide is a naturally-occurring peptide produced by the body. A peptide is a group of amino acids, the building blocks of proteins, and this particular peptide is secreted in response to certain stress; this one in particular is the stress in the heart, particularly when the heart is stretched.

One of the hallmarks of heart failure is when people hold on to too much fluid. When they hold on to too much fluid it begins to backup and literally stretch the heart. That extra stretch causes the cells of the heart to excrete BNP and that can be measured in the blood.

And the higher the BNP generally the more fluid someone maybe holding on to, although it does vary a little bit from person to person. But that why it can be useful in the setting of somebody being short of breath to distinguish whether the shortness of breath is due to fluid being held on because of heart failure or whether it's due to lung disease.

We think the reason Gator was having chest pain was because of the heart swelling. 

Today we relaxed.. He was stoked because Doc Everett reduced his sodium ban. Can you guess what he chose?? Top Ramen. He slurped and yummed through the entire bowl. Auntie Pres had the girls today, she even did all my laundry. Bless her! Tomorrow she goes to spend the day with Gator while I am with the girls... Daddy is up there to hang with his boy in the evenings.. How he managed to organize life, work, church, and still be so dang amazing is beyond me. Sometimes I feel like bowing down and saying "I'm not worthy, I'm not worthy" but I shouldn't give him a big head and so I refrain. 

Pray the antibodies will go down again and also,  in the midst of grief a family will choose organ donation. 

Sunday, October 5, 2014

The ultimate catch up 3rd edition

When last we left off things were somewhat status quo. As the weeks have progressed Alex's body has declined. One indication of this is where his liver sits in his abdomen. If it's lower in his body that's bad.. It is normally measured from rib cage to bottom of liver. It is more prominent, easy to find and measure when it isn't happy as well. Alex usually measures a 5-6... Two Thursday's ago, it measured at 8-9. We upped his Diurel (diuretic) to the highest dose. This with instructions to have a blood test on the next Monday to make sure his body wasn't getting too dry. Also with a caution that we have upped all his home meds to maximum and the next step would be hospital intervention. In other words, it would be wise to keep a bag packed. We were also waiting to hear if Alex's body had responded to the treatments to lower his antibodies. Nothing had worked before. I was still hopeful but not 100% committed to believing this time would be different. Monday rolled around and our nurse Dylan came to draw blood. I waited for a couple of hours for the results. When I couldn't wait any longer I called. Everything was still pending. It wasn't until the next day that we heard that Alex's kidneys weren't happy. We backed off of the diuretcs. Still waiting on the PRA (antibody panel). On Wednesday we got the best news.... Alex's antibodies had indeed dropped, from 85 to 61. Of course I had a million questions but there weren't any answers yet. Our team knows how much I worry and wonder and wanted to deliver the good news but hadn't had even a minute to plan beyond telling us. Bless them... I jumped around like a lunatic. I squealed, called daddy and all around was fit to be tied, in a good way. 
 Last Thursday at clinic, we rechecked his kidneys which were back to being happy. We thought he could have freedom to eat sodium but he ballooned up. 
Those are some puffy eyes.. Back to watching his salt intake. He was so miserable that all he wanted was to sleep off his sodium hang over. 
We are doing daily weight checks in order to see if he retains fluid. If so we can cut back even farther on his sodium. Even though it's the only thing that tastes good right now. Good thing Heart Momma Jill had my back and found some Ramon recipes with much much less sodium. 
He has been better since Thursday.. 

Now that we've caught you up on Alex. 
Here are a few shots of Ry's birthday party. 
A huge huge thanks to Jordan for letting me borrow the decorations. 



We played some French games and some English games. Pass the parcel was a big time favorite. As was this game^... I can't remember what it's called in French but it's similar to Down by the banks.. 
We also had some American French food and had a dance party. 
The kids had green ribbon week at school. The event kicked off with crazy hair day. Even if Gator can't be at the school he still wanted to do his crazy hair too. 
Here is Ryleigh. She loves the idea of crazy hair day. But this Diva doesn't really want crazy hair. 

Gator wants controlled chaos.

The little girls didn't want crazy hair at all...just cute. 
Ry and I ran the Witches Brew HaHa and totally enjoyed it. We didn't even cry. We must be getting better at this. 
Getting ready was half the fun. 
We had an incredible conference weekend and celebrated this little girl. Which deserves its very own post! 












Monday, September 29, 2014

Crazy selfies with the aunties

Apparently because my account is Gator's account, I get all his silly selfies.. And these included the aunties.. I nearly died laughing.. 
For your viewing pleasure...


















Hahahaha.. #1 rule is- Don't take life so seriously..