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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.

Sunday, February 22, 2015

Ways to stay part of it all

Just one of the neat things about our "village" is our ward (LDS local congregation). I am pretty certain we belong to one of the most thoughtful wards there is. I have been so amazed at the generousity, patience, acceptance, kindness, thoughtfulness and love we have been shown. 
I say this because just recently it has been proven again and again. 
My girls are picked up each Sunday so that I can be home with Alex to give meds. Then Alex's incredible primary teacher comes to our home. She has such fun lessons planned and prepared. Her hubby comes to drop her off and he is such a fun visitor as well. They have visited him in the hospital, helped with his program part, taught him articles of faith, played with him(that's important too), and loved him. The young men bring the Sacrament to our home. It fills our house with such a wonderful spirit. It is an amazing way to feel connected to our beliefs and strengthen us for the rest of the week. 
That's not all. In about 2 months Alex will turn 8. He will have a choice if he would like to be baptized. He will have to wait until it is safer. Because he is on such high doses of anti rejection medications and steroids he has absolutely no immune system. This means he is pretty restricted on places he can go. Home and hospital are the only indoor places he can visit. So he will be baptized in August. We did Facetime in order for Alex to be part of the "it's great to be eight" meeting. I can't believe he will
Be in cub scouts. He gets to have a special Cub Scout leader who will come to our house to start him in the program. We will get him the shirt and book, I will try and stay out of it, but it sounds fun even to me. One of his leaders brought over his Pine wood derby car. He and daddy already scanned the Internet looking at ideas. He can't wait!!! 
There have been so many helping hands for meals, help with the girls, special treats, cleaning, dates to help the girls feel loved.... The list is endless. I have had to readjust our freezer situation to have enough room for all the amazing meals. Maybe I am a terrible cook or maybe it's because I didn't have to make it, but everything tastes really fantastic. 
We could easily be overlooked or even be so hard to accommodate because of our situation. Instead we feel included and loved. I am so thankful for inspired and wonderful people. Thank you for taking the time and energy to help us. 
My two sweet friends Jessica and Natalie even made my dream thank you gifts for our hospital friends.
Tomorrow is another clinic day. I am getting pretty good at driving around and not getting lost. I am really good at getting lost. Even in the grid system here in Utah. I usually take the exact same route and try very hard not to deviate at all. But surprise myself when I make it safely to the hospital, when I have had to change course a little. Gator loves to listen to talk radio in the morning on our way there. Funny kid. 

Alex's check up was awesome! We even got free Panda Express. Everything went great.. Biopsy Monday. 




Saturday, February 21, 2015

Going Smurf status

Talk about a creative medium. Let's paint our hand, instead of paper. She looks upset because I told her it would eventually come off. That it would most likely get into her food, on her face, on her clothes.. 



I guess in her mood she proceeded to paint "stormy sky" which proudly hangs for all to see. Therapy painting needs to happen more often around here I guess. 

This guy came in the mail today... Isn't he so cute. It is incredible the talent that people have and are willing to share. We love him!! 
Everyone seems to be doing well. Alex has had such a great time being home. 

We have some calf news but we are waiting on the last little girl, then I am posting all of their little pictures. Thanks Farnworths for letting us be a part of something so fun. 

Thursday, February 19, 2015

Miss MayLee May

Whooohoooo! Yesterday May had an appointment to check her tethered cord syndrome. We have a new neurosurgeon because our other one finally retired. 

She insisted that both she and I wear a mask. She laughed at the Doctor while he tapped on her for reflexes. She wouldn't do the other strength tests, I don't think she understood what he was asking her to do. Or maybe she was doing the "I will pretend to be shy even though I am not". Her spine looks great for now.. She is clearly meeting all of her development goals. We get to go another year before we see the specialist again. Also,  He asked if she was potty trained yet.. 

Sigh*** 

nope..

 But she is interested so today we did this. 


She made it to the potty three times and had two accidents. It's time for my least favorite parenting job.. We can do it.. It's more training me right now than her anyway:) 
Everyone needs a stool. Just say'n!!



Tuesday, February 17, 2015

Results are in!!!!

What a busy day! Got up at 4:35... Who even knew this hour existed outside of my home/bed? Because of the insane hour, nobody was on the road. It's like a perfectly great driving time. We made incredible good time to the hospital. We were so early we parked and snoozed in the car till 5:45. 

Power nap!

We checked in and they isolated us because of Gators C-diff status.. Although that is resolved now. I sort of liked not having to worry about the other germs that could be in the waiting room. Alex was worried about a lot of things... Like wearing hospital pjs. He doesn't mind the comfy pants, the shirts that tie and snap are just so breezy... I let him wear his cozy jacket... Whew! Then he wanted to know if they could please poke after he was asleep? That wasn't a problem either. He picked Root Beer for his "air" we walked down to cath lab.. He strolled in like a boss, told jokes while he drifted off (his material is sort of getting old) but the cath lab hadn't heard them so he was good. We will work on some new material for next biopsy. I ran over to grab some oatmeal for breakfast, then went back and fell asleep in the imaging waiting room. I startled awake to the pager, ran back to cath... Heard news that his pressures looked a teeny bit better than last time. That is a forward baby step. Hurray! Then up to recovery. Gator was smiling and talking... He felt pretty darn great..... We hung out while he recovered... We were going through the last bits of discharge with the incredible Dr. Lal when we realized he still needed an echo. My fetal echo was supposed to be going on as well. So Gator boy stayed put for his while I rushed over to Eccles for mine...


Bonus baby brother looks awesome. Dr. Mennon said he was happy to say that they are pleased with how the baby's heart looks. I was still so tired from the morning I snoozed through the last portion. Although I tried to be impressive by asking Bell (we've known Bell ever since Gator was a baby) if I was correct in my reading of my fetal echo. I nailed it! 

I ran back to discharge Gator! We surprised Grandma Clawson with our earlier then planned arrival. Which meant we got to hang out with her for a while. I even got a little nap.

Gators biopsy results came back CLEAN! His echo looked great! 

The prayers, good vibes, positive thoughts, crossed fingers, and every other good thing everyone has sent our direction is so appreciated. 

This cookie cake from Howey's was divine! Decorated by 15 year old Britton... A heart-brotha-from-a-notha-motha!!! Thanks guys!


First ever post transplant biopsy/clinic day

I had high hopes of homemaking several thank you notes to bring, I would also smartly attach some sort of darling treat. These would be handed out to the amazing doctors, nurses, techs, housekeepers, fellows, receptionists, and many other friends who have done so much for our family. 
Ummmm yeah, that hasn't happened yet.
 Not to mention my list of amazing neighbors, friends and family who we are eternally indebted to.
 I also wanted to get together a small "you can do it!" Item to bring to friends who are currently here at the hospital who need a little extra love. 

Also hasn't happened..

Some day we will have this new schedule mastered. Then I will get my mad crafting skills on and I will be impressive. 

Today we are slugging by, we made it home!!! 



only to have the girls sick enough they shouldn't be around Gator. We shipped them off to Grandma and Papa Homers. They took care of all the snuggling, movie watching, and taking to the doctors. MayLee had an ear infection and was wheezing...so besides her regular Nebs treatments she needed another breathing treatment three times a day and an antibiotic.. She was "discharged" from Homers yesterday and back home with us. We are managing all of Gators things pretty well. He has had more energy and willing to do more at home then at the hospital. 
He even walked halfway around the block. And he took a four wheeler ride with Blake Kapp, one of his best big buddies. 

And... biopsy, clinic and fetal echo later today.. 
Gator was worried about the hospital shirt and the poke. We resolved that with letting him wear his jacket and also doing the poke after he is asleep.. Whew! Results to come:) 



Thursday, February 12, 2015

No, not that "H" word

The H.........E word. If I say it out loud, or even write it out, I am sure to jinx us. But sometime tomorrow, the HOMEr family will be under the same roof... 
Auntie Preslee and Papa Clawson have been on Gator duty at the hospital while Jeff and I have received instruction and training... Then cleaned like crazy. I would like to tell my angel helpers Debbie Girl, Tamrin, Jen and Marie that I couldn't have done it without you and your amazing help and dinner. While I am mortified you saw my dirt, I know you still love us. Mariah, thank you for getting Alex's room ready..(I will post a finished product picture). The hardest thing of all will be staying away from everyone and in our bubble while Gators immune system is non existent. But it isn't forever and we want to do everything we can to take good care of his special new heart. 

Sunday, February 8, 2015

That's really gross, I love it!

Yesterday I took my Ukulele up to sing songs with Gator... I made up my own words to "bringing home a baby bumble bee" in my version you get to lick off the baby bumble bee and then spit up the baby bumble bee. Alex thought this was absolutly hilarious and laughed so hard. He told me "that's really gross, I love it!" Then he sang it over and over. 
I thought, what have I done? Alex was able to ditch his oxygen today. I was pretty sure he was going to come home with oxygen but he is proving me wrong. Today he also took a stroll around the halls.
His drainage from his paracardial efusion is starting to slow down considerably. This efusion was most likely caused by the trama of all that had occured and has taken time to heal. The drainage tube looks so scary to me, but it has helped so much I am grateful for it. 
Today has also been a change for our family, daddy has been asked to serve in the stake presidency as the second counselor. It is definitely bitter sweet because of the amazing ward family we have. We are also coming realize the amazing stake family we have and we are excited to be able to do something to pay it forward. We have so much we want to give back and so much gratitude for our loving community. As we sat in a meeting with Elder Borne and Elder Malm I just wanted to listen to them longer. They have an enormous love for the Savior and for those they serve. 
"Sometimes we are asked to do incredibly difficult things. I think our tendency is to ask if we caused the hardship because we aren't good enough, spiritual enough, or because we need to be punished because of past transgressions. But, remember that we are actually being refined and molded and humbled enough to rely on the Savior. This gives us an opportunity to become more like Him. What will our choice be? To question his love? Or to more fully rely on Him?"

I can't remember where I heard this, and this isn't word for word.. But I do know it has sure helped me to remember we aren't being punished by "Bumps" and to more fully enjoy, appreciate and show gratitude for the miracles. 

I have had an incredible birthday. I already got everything I ever wanted and I got spoiled by friends and family. Thank you everyone! To top it all off.. The other day this showed up on our porch. 
We have had a RIVER of love. But I won't let this anonymous love stop. I will pass this on to the next family who needs some love. Thank you brilliant RAK (Random acts of kindness) person. What you have started is amazing... 

Thursday, February 5, 2015

No rejection!!!!

We got word that Alex's biopsy came back clean. His new heart is happy in its new home and his body is happy to have it! Confused a little?? Sure it is, but making strides at coming back.
In fact....
Yesterday after a morning of blank stares and questioning glances.. I decided maybe we should play his IPad. This was a gift from Mountain America Credit Union, at the golf tournament Alex was a spokesman at. We were running through a couple of games and we came to Clumsy Ninja. I have never played this game before, completely clueless we start pushing buttons.. Some sort of add for a singing monster app comes on and we watch it and move on the first time.. Alex reaches up and pushes the button again. I was a little shocked by that but not totally as he had been swiping his fingers over it like a baby does. The same app commercial comes on again and Gator started to talk clear and controlled. "Ah, we must have to watch this in order to get the golden eggs". You could have picked my mouth up off the floor. It was though a light switch had been turned on.. The bulb was dim, but the light was slowly growing. He called me mom again. I can assure you it was just as sweet to my ears as when he was just learning as baby!! He still has a hard time with eye hand coordination and fine motor but with this small progress I can see that recovery can happen. He slipped in and out of understanding wanting to ask questions she couldn't form. I am sure that is terribly frustrating. Putting people in their proper roles is another thing. 
He is still putting drainage out from his collection of fluid around his heart or pericardial sack. We will watch it and make sure it looks like it's getting better. More good news, he moved to the recovery floor! Papa Clawson has been with him today and he said they needed a moving van to get him up to his new digs. Hahaha! 

I can't wait to get up there tomorrow and help sort it all out! 

Tuesday, February 3, 2015

Everyday is a bump and a miracle

That title and quote comes from a dear friend Julia! And it's so so true. 
The recovery from transplant has been much more difficult then I ever could imagine. Putting that out here for everyone has been another worry because I never want to seem ungrateful. The struggle to recover has been a completely different animal. Once extubated Alex started to talk, then became increasingly confused, then slowly he slipped into a deeper and deeper delirium. He is so confused that he doesn't know me or Jeff. He knows daddy more than me, neither of us most of the time. It's exhausting and heart breaking. I thought, great, we totally fixed his heart to have messed up his brain. But, he can improve. He can come back. This morning he had his first official post transplant cath and biopsy. The team once again measured his pressures. Which so happily have gone down to an acceptable pressure. We won't have a result until later of the biopsy. We are hoping for no rejection. They have prepped us that there might be, because of everything he has endured lately. He also had his single lumen PICC, changed to a double. He is pretty quiet, each day little glimmers of the spunky boy we know comes back. Time is what it will take and what we are prepared to put into it! 

In other news, I passed my early glucose three hour test. 

Ry has been busy entertaining French dignitaries. Getting herself some awesome footie jammies, and started an acting class. 


Eden has been waiting and hoping each day for school.

And May has been