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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, April 29, 2014

Weekend review

It was a fantastic weekend. Jeff and I went on a retreat that filled us both and gave us a chance to connect and bond. Not just with each other, but with some other sweet folks. While we were away the kids stayed with grandma and papa. They had plans to visit with Captain America, then see the movie. What a BUST! Captain America slept through his alarm and I sent my extremely sensitive children to a PG-13 movie.. It was scary and I heard about it. Face-palm.... Sunday the youth came over for a fireside. We love having them come over. We are pretty lucky to have such great kids in this area. Right after it was over, Jeff took Gator to the hospital for his IVIG treatment.. From what I heard... They had a hard time getting his IV started. Two pokes later and they got things started. He slept through a poke in the night to get his anti-Xa. Daddy got emails sent and Gator sent himself to bed early. This morning, after I got Ry off, the little girls and I went up to take over and take gator to clinic. We did a lot of tweaking with meds and will be watching his Sats. He dipped some last night. If that continues we will be getting him some oxygen to help. His liver #'s were a little wacky, we did a urine sample to rule out infection/virus. We added Aldactone upped his Lasix, lowered his Losartan, his Digoxin and Lovenox stayed the same. He had some Tylenol and Zofran tonight too to keep his body happy after IVIG... 

I ordered a blood pressure monitor and an additional pulse ox. We need to have these things on hand. 

Just to add some cuteness to this update... A little lips:)






Wednesday, April 23, 2014

Day 77

I meant to post yesterday of our count of waiting days. It would have been cool to post on days 25 and 50 and then 75. I just plain forgot. It seems to blur together. I thought having Alex listed would feel different. I don't know why I thought that. Maybe it doesn't feel different because we aren't waiting in a hospital. We are all home together. Alex still gets in trouble, he is still expected to take care of his responsibilities, he still must manage himself in a respectful way. He can still giggle and play with his sisters. He can enjoy school and friends. Alex is even involved with extra activities like baseball.  He is not letting it loom over his head and hold him back (I would like to). Maybe these feelings of mine will change. Right now staying the same is wonderful and dare I say, lucky???
Because.....
One of Alex's heart buddies was listed today. His road seems much more difficult than ours. We are hoping and praying for them. 


Yesterday morning I went to yoga. I am not very good at it. Try to imagine a rhino or a hippo trying to contort themselves into strange stretches. Add in that class starts at 5:30, my hair is just out of bed crazy. Every time I do 'down dog' I smell my own morning breath and don't remember my special breaths (that starts with a V) because I am now holding said breath, as not to die... I really should at least brush my teeth before I go. I am trying not judge myself, or compare my skills to my classmates. I giggle out loud because I try and diffuse my embarrassment. Teacher Pam knows my name. She encourages me, that is probably why I keep going back. If you need a great laugh visit yoga at 5:30 on Wednesdays.

Eden and May are such a duo. Eden asks a million questions all day long and May is busy discovering everything. May has been "unplugging" a ton lately... I might have to get sneaky on how to deal with this issue. Oxygen cords are a tricky yet, handy things. I haven't figured out the best way for her to play outside. It's hard to follow her around constantly. It's also hard to drag the long tube around. When we go outside I unplug then tuck her tube in her pants. I am starting to worry she is unplugged too long. We need figure out something. Not long ago I was reading about a robotics device that follows the O's user around with the tanks. It sounds fabulous!!! I wish we could have one. Medical ideas and advances are happening all the time. We are blessed to live in a time when we so much is happening. Maybe my children will bless the lives, or pioneer something for others. That is my hope! 

Birthday Boy Pictures




This is his tin man shirt.. 
The wizard of Oz- to you my galvanized friend, you want a heart. You don't know how lucky you are not to have one. Hearts will never be practical until they can be made unbreakable. 
Tin Woodsman: But I still want one. 







Tuesday, April 22, 2014

Alex's birthday

Wow baby! Another year had zipped past and Alex turned seven. We never thought we would see seven years with this sweet boy. It is unreal to think that he has endured so much but continues to push on. He is such a wonderful part of our family! 
Sunday we celebrated April birthdays on the Clawson side. Uncle Chaison, Jenivee and Alex are our April birthdays. After church we went to the cemetery to send Jenivee some birthday balloons. Chais made this gorgeous headstone. It was decorated so cute! We wrote birthday notes to her and sent them up to heaven. 




Presents, egg hunts, visiting, and playing with cousins came next at grandma and papas' house. We love to be together with family. 








On his actual birthday Alex got to go out to lunch with dad at Chick-Fil-A. He was surprised by his buddy Maddox who showed up with balloons. He played outside, had friends over, played IPod, played Wii and had an awesome day. That evening we went to grandma and papa Homers for dinner. He chose stroganoff.. Three helpings later he was stuffed! He opened presents while our tummies settled until we could have brownies... Mmmmmm. 
Gator got all kinds of rad gifts.. The girls wanted to get him one of everything. He is so happy with it all.. Our amazing home teachers even brought him a remote control car. He recieved an email  from GG Baum and today a card in the mail from GG&G Groesbeck. There is more love in transit, thank you everyone. 

Easter


This has been an especially wonderful Easter season for me. I have felt so much happiness in the knowledge of the attonement. It gives me such hope and drives my faith because of our situation with Alex. Knowing that our family will always be whole no matter if we are not always physically together is such a peaceful thought. This knowledge makes me feel more grounded and grateful. I am also thankful to know that our Savior has experienced the sorrow, frustration and grief that I have felt. But, he has also experienced the fear, pain, and fatigue that Alex (And MayLee) have felt. While I can only love my kids and sympathize with them. Our Savior has perfect empathy. 
So this holiday with its parties and fun is also brining joy and new life.. 
Our ward Easter egg hunt and pancake breakfast. 





The older kids went out after the younger kids and so I didn't get any pictures of My Ry! Just imagine her being her darling self!

We decorated eggs on Friday night!! 




Easter Sunday the Bunny had visited. (Just barely, I think we heard him around 4:30 am) 
We put on out Easter duds... Even cooler was that we got to have daddy home in the morning. Gator and daddy were marchers.. I didn't get myself an Easter dress but was super happy to have found that with all the weight coming off means I can fit into a sweater my sister in law gave me a couple of years ago. So I fit right in. And yes, I love the matchy-matchy.. 











Bike season is here

Jeff road in the Salt Lake City Bike tour, last Saturday. He was so excited to officially start the season. He really liked the route except through Memory Grove because it was so bumpy and rough. Other bikers were rushing through that segment and that made it even more  crazy. The rest of the ride was smooth and awesome. He started the tour up by the medical bridge and finished at the  down town library. It's the marathon route so roughly 26 miles. The first part of the ride had climbs so you can really enjoy the rest because it isn't as uphill. He must have been between the first 20-40 riders to cross because he finished in about an hour and 20-ish minutes. That is crusing. I got completely lost trying to find my way to the finish line in the van with the kids.  The roads were blocked off making it hard to get to, we finally made it. Lucky for us, we have preferred parking and found a really awesome parking spot! Blessings in disguise, our medical madness. We came down to the finish line and watched him cross. Way to go! 
We left at 4:45 am so pj's are exceptable attire! 



She gets so frustrated that her legs are short because she wants to "det down". I won't let her get down until we are were we are supposed to be. She would like to walk. 


Black is slimming but he had totally rocked his weight goals.. Down 33 LBS!!! He has brought down his dangerous blood pressure and really improved his overall health. I am so proud of him, plus he has inspired me and cheered me on.. He looks dang hot in his stretchy pants... 
He didn't LOOSE those pounds he burned them off.. He and I hope never to FIND them again! I found 1 pound last week but I am back to recording and being cautious. Holidays are hard I found.  To make my goal weight I need to burn off that pound I found then burn off the goal pounds. Hurray for bunny food (salads) this week. 







Monday, April 14, 2014

Getting teeth

Teething is rough on little people. There was much snuggling required today.