Cardiology Appointment Aug. 28 2012

He is being so brave about the EKG stickers.

Look at that lipIn 2 plus years going to Cardiology appointments I forgot his journal this time. So I didn't have my list of questions or anywhere to write his vitals.

He is so very helpful by holding up his shorts for the blood pressure cuff. He sat so good through all FOUR blood pressures.

He lifted up his shirt so Dr. Su could listen to his heart

 

So the appointment confirmed what I already knew. It is really nice not to be blind sighted anymore. Severin's heart is telling us it is time for the Fontan. He needs a sedated echo in October, and his surgery will be in November. Now I await that dreaded (but necessary) call from Linda. Dr. Su would like him to gain as much as he can until then. He is doing great all things considered, and I would expect nothing less from this little SuperHERO.





sometimes that Neleh cracks me up!

Neleh always takes her time getting out of the van, well doing anything that is.

On this day I brought in Sev. Trash to the garbage and I'm sure my arms were full. But Neleh took a little longer than usual. I looked out and she was still in the van so I let her just work her way in. There is NO rushing this kid or be prepared for a major freak out.

So next time I get in the van, this is my steering wheel.

Note to self do NOT leave foam stickers within Neleh's reach.

When Thom gets in to drive, she tells him "I made it for a surprise, and my neck got so sweaty!"

Thanks for your sacrifice Sis, you put a smile on my face!

nothin' like a summer rain storm in Utah

yes  I do believe our new neighbors think we are crazy, everytime it has rained this summer my kids run out to play in it. And 3rd north has No shortage of puddles to jump in. But our new neighbor kids stay inside and watch us out of their livingroom window.white shorts, what was I thinking??

Sev ran out without his shorts on

When they are cold and Sev is purple they come in and take a nice warm bath.

First Day of school

Johnathen is in 2nd grade Mrs. Andersens class

Neleh is in preschool with Miss Becky and Miss Lisa

Sorry none of Morgan, she gets an incoherent wave from my bed when she leaves.

Joy and Sorrow

Sometimes this Heart Mom gig is a little more then I think I can handle.
I have tears of joy as I type because one of our Heart Buddies got her new Heart today. We have 2 others in the hospital waiting. My JOY is because this beautiful, blonde, 5 year old girl gets a chance at a new life, again. Because you see this is Miss K's second heart. She was born heart healthy but as an infant she contracted a virus that attacked her heart. Her heart then developed coronary artery disease, making it so she would need a new heart again. To receive a special gift like this once is a miracle, twice is unheard of. My heart is full for the family that lost their child today. They had to make an extremely tough decision. As I pray for K, her family, the surgeons, the medical team and all that have assembled to make this miracle happen, I also pray for the Mom who has had to go home to her childs empty room. She isn't done doing hard things, she has to say good- bye to her sweet babys body, the house that held the spirit that was too big to stay in this world. She has to hold on to the simple joys that her child left behind, because there will be no more new ones made. From one Mother to another your selfless act has not gone unrecognized. You and your child have touched so many lives, there is no way you will ever know. But if you read this and know a mom who had to make hard decisions like this, please tell them Thank- You.

Aug. 8 2012 -2 year old well "toddler" visit

Here are Severin's Stats:
Weight: 26.0 - 21%
Height: 34" - 31%

Dr. says not bad for a heart kiddo. I say he has lost 4 oz. I do not know what more I can do. I give him a 350 cal Ensure, 130 cal Carnation Instant Breakfast, topped off with 150 cal whipping cream. That is a 630 cal bottle! And yes it was confession time at the Peds office today; he still has a bottle, binki, and I have no intentions of potty training him. Dr. Paxton just smiled he set some goals lets see what we can do to get him off the bottle, then binki, and no worries about potty training until after 3 years old. I'm willing to leave the bottle behind post surgery, and weight gain is back consistent. So more like January. He can give up the bink when he is ready, same with the potty. Stay tuned Cardiology appointment is on the 28th.

if DIRT= FUN then my kids had a blast!!!

We have had a busy weekend. After a few hours at Lagoon, we headed to Heart Camp. Heart Camp is through Intermountain Healing Hearts, a CHD support group. Camp is at Camp Wapiti in Tooele. We had so much fun this is the only picture I have- and I took it at home. The kids ran around like crazy village people. We stayed in a cabin that had bunk beds. We all got to choose our own bed. We watched "The Lorax" on the big inflatable screen. The kids had crafts and games while the grown-ups listened to Cardiologists speak about the advances they are making for our kids and their hearts. We also had a Special Needs Financial Planner speak. He gave us some great insight on how to survive an "expensive" child. Best of all we were able to visit with other Heart Families. And you know what? With all the kids running around you really couldn't tell which one have a CHD. All kids were able to just be Kids

Lagoon Day 2012!

We haven't been to Lagoon as a family for 2 years! This was Severin's first time, and the first time Neleh can remember.

They were good if they stayed on the ground

Then Johnathen came, Neleh cried at Every. Ride. And when she got off she would say "that was ok." Severin was just nervous and didn't know what to expect. I'm sure he was wondering "what the heck is she crying for?"

Severin really hated the Whales. I think he was just D-O-N-E

They all loved the bumper cars. I wish I could have caught Sevs face when they "bumped" into someone. He would open his mouth wide and let out a big belly laugh! Such JOY

Neleh got her very own purple car

Moonlight Half Marathon!!!

Yes I did it! I didn't even fall down and break out any teeth- that was a big fear of mine. Our only "injury" was blisters. I can't believe I didn't get a pict. of Jackies, it was huge!
This is my cousin Jackie. Out of everyone I invited to run with me she was the only one who made it. Jackie and I were raised as sisters- we even fought like sisters. We were roommates, best friends, secret keepers, Morgan's "other mother" and forever family. As we grew up marriage, kids, and living in different places made us separate for a time. All of that never takes away the bond we have. We used to go out to clubs and dance all night. We would get ready together, so we could make sure we both looked perfect. I would go with her in Jr High to her schools all night party. This time we got ready together but it was more about eating right the whole day, rolling out our tight spots, taping our feet, going pee a whole bunch, and taking 800mg Ibuprofen- before we even start. Off we went to a really bad club.
I appreciate my body's ability to push its' limits and endure to the end. It was a lot easier than I thought. I want to do another, when my knees feel better.
Thanks for the fun Quacky Duck! Not too bad for a couple of Mommies!