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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, November 26, 2013

Huuummmm!

While this whole experience deserves to be documented. I feel unease about writing it. Maybe I am suppressing the fear, maybe it's because things could change and I am holding onto the hope that they will change. Or maybe I don't want to send alarm out into the great internet family/friends world. Worried that I will receive comments when I haven't processed it all yet, and don't know the answers to questions that may be asked. Or maybe writing it makes it more real?  

But I can't sleep... 

Today Alex had Cardiology. Just a routine six month appointment. He had X-rays. Which when they called him, he went back "without you, okay mom" and had an echo, pulse ox, blood pressure and his heart was listened to. The kids are off track, Papa Homer is one of my biggest helpers of the other kids. He is visiting family out of town. So all four kids came.  We got some heavy news. Alex's heart isn't looking good anymore. His Fontan pressures look good, but his tricuspid is leaking severely and his function or ability to squeeze is really terrible. His liver has not gone back up and Doctor Su is very worried. He only has the one ventrical and it is just not pumping very good anymore. We could say that it is getting very tired. Alex has been in this sort of predicament before. He sort of has these highs and lows. It could be one of his lows. We are hoping it is just one of his lows. But, there is such worry that we are immediately starting him back on some medications that we hope will improve things and buy us time. We will also be taking a big step by talking with the transplant team. Transplant is not the end of worry. In fact it is an exchange of one set of worries for another. Transplant is something I had planned on, just many more years out. Back of my brain kind of deal. And, forced to the front feels overwhelming. I am sure I looked like the crazy mommy trying to digest all this information while Ry played quietly on her IPod (and listened to the doctor), Eden threw fits about lipstick she wasn't getting, and May wiggled on my lap and threw everything on the filthy floor. Sheesh! 
Clinically Gator looks amazing. That means by looking at him, you would never know how sick he is. He has 'blind heart failure'. For right now we do what we normally do. We may want to modify things some. Eliminate things that could overwhelm him. Like French immersion. What the heck would we do if he was adamant about staying? I don't know French to catch him up. He thinks he is the bomb in French... Aaah!!! Taking him out would mean starting over in another class with new friends and teachers. Is that an immediate thing so he can have a relationship with a new class/teacher? Or a cross that bridge when we get to it situation? So many things to think about. Also, getting sick is could be very bad. It could deplete his reserves. Sickies sickies stay away! 
As of right now we are in a hold tight spot. We will meet with transplant in the first part of December. Which technically is about a week-ish away. Then we will have more information, answers to the direction we are going. In the mean time I am suppresing. Jeff loves bike analogies, so here you go. 
While we have started peddling up what seems to be a very large and daunting hill. We just need to change gears in order to be more efficient.  We are not without training. We have been on many a 'push' and will surely overcome. (Even if we have to get off and walk a little) 

Sunday, November 24, 2013

Heart-skin-spine-lung mom

There are so many differences between all these things. No wonder they have specialist. It is amazing to me that we have learned so many things about our bodies. While I have had a crash course and can remember dumb details like, one of Alex's infections (bacillusserious) is recreated by reheating ham fried rice. Or that MayLee's Hemangioma is flat so we don't have to worry about it. I can also tell you that I have tried every trick in the book to rid Eden of her chicken skin, it flares in the fall. Really only in the fall. I plan on tryng diet next. There is still so much to learn and so many questions to ask. Like what is growing on Gators leg??? I am glad to report it is not Mersa. And it looks way better now that we have been doing the cream for a week. Better take Gator to see a dermatologist for his Moluscum, and eczema. I am so amazed that we have made so many wonderful advancements. 

Random candid moment:)

Flashes are bright mom!
Much better
Me too! 


Veterans Day, FHE, Hockey Game all wrapped into one

Wow!!! First day off track and I am calling it a success! We got all of our jobs done including reading and piano.. We got a few more Christmas gifts.. Then we went to a hockey game for free with our POAP!  Ry loved
 it. She sat totally entertained. Gator cried because he was worried about the players fighting. But calmed down after we told him it was part of the job. Eden loved the music... She danced like a wild women. May, well May had a great time too... 




Brace face

After all these years it's time to fix my smile. While it hurts my mouth like crazy ... And eating is way tricky. Here's to straight teeth. Jeff thinks I look much much younger. It's hard to take me seriously. 
I went with red and green.. 

Wednesday, November 20, 2013

A post from Ryleigh

Hi, I want to tell you what we have been doing while we are off track . We went to a hockey game on Monday. We screamed really loud, they even hurt each other nine times. Eden and Alex were crazy but it was so much fun . On Thursday, we went to a dollar movie. We were going to watch 'Planes' but when we got there it stopped. There was only the sound and no picture. So we saw 'Despicable Me 2'. I had great time. On Saturday, we saw Zendaya in a free concert at Traverse mountain. I was super excited because I wanted to meet her. But it was so crowded that I never did. I got to sit on my dad's shoulders so i could see her. After we saw Zendaya we went to JCW `s for dinner. I got a grilled cheese sandwich and french fries. On Tuesday, we got to see my grandpa and my mom got braces she does not like them !!! (insert Brynn- Correction, I do like them… I just think they hurt like crazy)… We still have plans to go Ice skating, maybe visit a park, go to Richfield for Thanksgiving, and my Grandma and Grandpa Clawson's. I get two Thanksgivings. My Aunt will sleep over because my parents are doing Black Friday. Mom says, we will get to go to the Library, and we might go to Trafalga to climb on the rock wall. Should be fun. LLLLAAAAAAA!!!!

*please leave me a comment!! I love you!


Tuesday, November 5, 2013

Undies FAIL

She is trying so hard to be independent. She just loves to dress herself. The problem is that, sometimes her clothes do not want to cooperate with her best efforts. This is what happens when you get your tummy through the leg hole. Only half of her booty is covered. The most annoying thing is the perm-wedge she has. It must be the fall her eczema is in full force on the back of her knee.

MayLee's Sweat test and Pulmo appt

 Neuro Endocrine Cell Hypoplasia of Infancy seems like such a huge name to describe such a little persons lungs. We met with Dr. U and discussed May further. She is almost text book case. I was able to take my long list of questions and have them answered. Some of them must have seemed so silly to the doctor but I am the momma and I am trying to understand this little person. After her pulmo appointment she had a sweat test. This test helps us to rule out CF. A funny little test. They place these electrodes on there arms and activate her sweat glands. Then she is wrapped with warm packs and then this heating blanket. She couldn't bend her arms at the elbows because everything was taped into place.  she looked so funny and I laughed until I snorted. The nurse thought I had lost it for sure. 

May kept looking at me like I was nuts for letting this strange lady do this. But she didn't seem too bugged.

We needed this contraption on for 30 mins. May wasn't about to hold still so we went for a walk.

 We went to the fourth floor terrace to blow kisses to May's little cousin Jenivee. It was a gorgeous day!



A nurse was eating lunch and noticed may had fallen asleep. She asked if she could grab her a blanket to cushion her. She brought her a warmed blanket and we wrapped May in that. Then she also brought this cute blue blanket that May got to keep. Love her! We won't get the results of her sweat until this week sometime. She also had some blood taken for other tests and I am not sure what they all were. I can't remember. I should :{ but I can't. It took two pokes to get her tricky veins to mind us. They must be like her momma's they hide as soon as the needle comes near. 

Happy Halloween 2013



 It took great effort and lots of giggles but we did get the pumpkins carved this year. It almost didn't happen due to how much else we have had going on. But, we squeezed it into our life. 

I am so glad that we did. May loved it. She really just wanted to eat her pumpkin raw. She liked tasting all kinds of things.

Even these stringy snot like things. This part of the pumpkin gave Eden the willies and she did not want to take the guts out of her pumpkin.



Yummy








Gator did the spider, Eden's has a tooth, May's is the grinning pumpkin and Ry's is the pumpkin with one eye. Hers looks the best because she did it at activity days and used a template. The other pumpkins are template free baby!!!
 


It was my year to put together costumes.. So the girls were the Three little piggies and Gator was the Big Bad Wolf.





My friend Holly made these killer hats for me. They turned out soooooo cute!
                   
 



If you can't tell, that is Jeff not Si from Duck Dynasty. Although the likeness is unreal. He even has his Tea Cup sans the tea.
 

Post trick or treating sugar rush…. A successful year.