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.

Monday, June 30, 2014

Catch up overhaul

It seems like I just can't stay ahead of anything these days. I know how important many things are, I also know how many wonderful supportive friends and family we have who want to know how we are doing.
We are doing Great!!!
Oh, you want to know the details??? alright, sit a while and I will share.
Jeff and I were asked to speak at a youth conference. It was an amazing experience to be in the presence of such amazing young people and enjoy their light and life. I however, am a chicken and had a beautiful and elegant talk prepared... then I blubbered through and muddled my words and prayed like crazy that they felt the spirit in some fashion. Jeff did amazing as always. I am in awe of his composure and his ability to invite the spirit. He has such a way of connecting with those he shares with. Maybe it has something to do with serving a full time LDS mission. Or maybe it has something to do with being the Bishop? He seems to have lots of training and at speaking. I just wanted to throw up ten times. The best part was driving up together and chatting. We love being together and there is so much chaos in our household, quiet time to visit doesn't happen very often. It was also nice because it was our anniversary week. It is hard to believe this.. but we have been married for 13 years. I am so thankful to my wonderful husband for everything that he does, pride doesn't even begin to scratch the surface of things I feel for him. In fact I still call him my boyfriend, because he treats me as sweetly as he did when we were dating and I was the center of the world.

That weekend Ry and Eden danced in the year end recital. They both looked and did fabulous. Eden stole the show. She knows every word and move. She cracks me up. I am sure this is one of her talents. Ryleigh did fantastic as well. She usually has terrible stage fright but still did great. The girls both earned their trophies (which Eden insisted on sleeping with the first night).

 Fathers day was a fantastic day to celebrate Jeff. We made him french toast for breakfast and tried to treat him to a day full of hugs and kisses. We got him a new grill. He has been wishing on this for some time, when our old grill died.
photo curtesy of Eden

On Monday I noticed that the Heparin Ball that continuously goes with Alex's Milranone
to keep his lines open wasn't getting any smaller. It is pressurized and slowly administers the medication. It is such a small flow that the Hep ball lasts 5 days. The darn thing malfunctioned in some way and it wasn't giving the medication and it wasn't keeping the line open.. which meant I called our awesome Home Health nurse Dillan to come to my rescue. When that didn't work we both decided I better run Gator up to PCH to have them look at it and hopefully save his line. I had called on the way there and let the on-call Transplant nurse know, we were on our way. I guess ED doesn't usually deal with PICC and Milranone because that is usually done in the RTU. RTU was super busy and packed full so we got to hang with the ED team. They loved us!! We were chill and laughing and telling jokes and we were thrilled that a little TPA later meant we were on our way home. Clear and saved line. The best part about it... Are you ready for this??? We got done at 11:50 P.M.
 That meant we could go to Walmart and buy the Lego Movie!!! Gator had been counting down the days...
He watched it three times the next day!

We have been hanging out in clinics, managing home life pretty great. I have come up with a daily schedule that includes reading and school. Some days we get to do it all. Somedays we don't get to much. We are learning how to balance it. Alex's teacher has been over for school. We still haven't nailed down what we are doing next year. I don't know how to handle it all yet. I am afraid I am not a very good teacher. I have to stop everything, sit with Alex and help him. I can't give him an assignment, tell him to work on it and leave to accomplish another task. It is very difficult for a multitask-er to focus on one thing. Plus it seems like the little girls need me right when I sit down to help him. We do a lot of reading and floor games while he works. When Ry gets home we want to play and be crazy so that isn't a good time. When the baby naps I have 40 other things to accomplish that I can't do while she is awake so that is no good. Somehow we will find the balance.

Jeff's brother Ryan, wife Alisha and Grace came into town and we have been playing with them. We even had family pictures done. Thanks to the amazing Angie for your work.

As most of you know, on the 21st was the big fundraiser for Alex's healthy heart. It was an incredible day. We want to thank everyone who came, who spread the word, who worked a million hours, who prayed for us and who helped in whatever capacity you did. I don't even have words to describe how it felt. We were surrounded by so much love. The air was thick with it. Bright and Early there was a 5k run and then a 1mile fun run. Jeff ran and pushed Gator. He was accompanied by our neighbor Kyle Hansen and Jeff's brother Ryan. They took turns pushing Gator. The very last bit of the run, Alex got out and finished with his dad. It was a huge moment for me to see my guys accomplish this run together flanked by men who love him so much. 

Together we did the mile...
I was so amazed with every runner out there. We even had the Mayor of West Jordan and his sweet wife. They were impressive runners and finished before daddy and Gator so we only have a picture with the Homer girls. The Mayor has such a huge heart and gave me everything he had in his wallet, and expressed he wished he had more to give. How absolutely generous of someone who knew so little about us but wanted to help. To top it all off, we know he must be extremely busy with his city obligations, and his wife had only met Alex one other time at the hospital but was so sweet to him. He never remembers anyone while there. I think he might block out somethings he doesn't want to relive. She happen to meet him on the clogged PICC, dumb bath mommy day.  But I remember her, and I am thankful that she took the time to come to the aid of someone in her community.

After that Alex had pre-carnival playtime and he used it to ride the trike bikes and go in the photo booth and get snow cones. I was amazed and humbled by the organization and expertise of each booth.  Everything was amazing. Things that could have been a problem for the committee resolved and the silent auction, boutique and the un-bake sale were in full swing. Gator especially loved the dunk tank. He spent most of his time trying to put people in water. A big thanks to all the dunk-ies.
This is one of our hospital buddies. Cody works in the lab at PCH. We call him and our friend Chelsea "One poke wonders" 
Dunk a doctor!! Chris Gee is a invaluable resource. I even called him in the middle of the night. He is such a great friend! 

Alex has the neatest Primary teachers EVER!!! Brother Jones brought his "toys" so we could play.
Sister Jones thought of writing on the bucket...

was worried that Gator was getting sick and would try and make him take breaks often and keep him hydrated. Some of the breaks were successful and others..... weeeeellllll, not so much.

The grandparents took care of MayLee for naps and care.. And super Auntie Ave was Eden's personal carnival buddy. I didn't have to worry about the two little girlies one bit. The best big cousin in the world held my little Eden after she crashed! 
enjoyed talking to everyone and wished I had the time to talk and thank every person. More pictures to come! 
We want to express our gratitude and want everyone to know that it was a huge success. Our medical financial worries have subsided and we are so grateful to everyone for giving us this gift. I bawl every single time I think about it. It is such relief. It is one thing we can remove from the hardship and just focus on the kids and getting the best care possible. YOU did that for us!!! With our WHOLE hearts... THANK YOU!
Especially to Marti and Nic. They are the masterminds behind it all and have recruited the most incredible team of helpers. We love that team. We are thankful to them for their selfless love and want them to know that we will do everything we can to pay it forward.

Most of you know that our friends have a little boy that is in the same boat as Gator. Teagan is just one year younger, with HLHS and is also currently waiting for his healthy heart. Teagan is even similar in that he is home on milranone and has the same blood type as Gator. The boys have bonded in such a special way. They both believe that their buddy is sicker and that the other gets their healthy heart first. We pray every day for our Teag to have someone say "Yes" to organ donation. It is amazing how when these guys are together they laugh and giggle and enjoy each other so much. He supported Alex at his carnival when he had been home from the hospital one day.. His mom Brytten ran the 5k.. 

 Teagan's Benefit concert was Monday. The very talented and amazing Transplant recipient Paul Cardall played. It was fantastic! Alex loved listening to his music and turned to me and said..."man he is pretty good at the piano!" I agree. Their family was so amazing to share Teags spotlight with Alex. 

Miss Jen and her husband (who is super cool) came to support the boys at both events.. I caught a picture of Alex and her together! 
Sibs are incredible! 

We have also been to Grandma and Grandpa Clawson's for birthdays and belated Fathers day. We love spending time with everyone. The weeks fly by. I wonder if I even accomplish anything sometimes. My mom has been a huge blessing to us by taking the little girls on clinic days. This means that they are home for naps. Both sets of our parents have sacrificed so much for us and we love them dearly for it. I know that not everyone has this kind of support, so I want to express my gratitude to them for being such amazing parents/grandparents and for giving up so much for us. They would both say it's not a hardship (that is because they rock). Our parents worry about us, our spouses, our children, their other children and how they are feeling about all of this and so much more. 

We met with members of our team on Thursday for a care conference. We went over the very best way to manage the funds from the fundraiser, and discussed another medication. And we talked about how things are looking from their stand point. It is somewhat depressing and we hope for a good long time with Gator. The reality is that his time without a healthy heart is looking rather short. We are trying to do what is very best for him. One thing that I did a happy dance for... Duh dun an naaaaaa!!! Alex's antibodies dropped a little!! He is now at 77%... I am a "glass half full" kind of gal. So even though it isn't that much on paper.... It is HUGE to me... Prayers are being answered. 

We are not stopping our lives at all. One of the things we all really look forward to is the MS ride. Daddy does the century and the rest of us who are old enough and capable, volunteer. This year we were lucky enough to have Grace with us.

 Some wonder if that is a good idea for Gator. The best way to forget yourself and to forget your trials is to do something for someone or something else. So this year in his oversized T-shirt, Gator volunteered along side Ryleigh, Gracie and myself. 

We unwrapped medals, hung them, passed them out, misted the riders at the finish line, cheered and worked the snack table. Preparations for this was a little crazy and I forgot the extra oxygen tank and bottle for May who was staying with Grandma and Papa Homer. But they are amazing and totally worked it out!
About two miles into the ride Jeff got a screw in his tire and I got to drive the course with my hazards on as "support".. He was amazing and it only took him 1/2 hour to make up the lost time. I am always blown away at how great of a rider he is. 

G&G brought up the little girls to cheer daddy at the finish line. 
I actually got a photo of his finish!! 
I am excited to start riding with him. I am going to do the SOJO ride with him in October.

Now that you are at the end of this novel...

my last thought is from Gordan B. Hinckley.... I have this taped to my calendar and it makes me happy and so I share...

Be Alive, Cheerful, Patient, and full of SUNLIGHT!
"Stop seeking out the storms and enjoy more fully the sunlight."


Kelleyn Rothaermel said...

WOW! You guys have been busy!! The girls looks so cute in their dance costumes. So wonderful to have a home nurse even if it didn't work and you still had to go up to the hospital. Family photos are awesome! Have a great week!

MEL said...

You look darling! I am always amazed by you and Jeff! Everyone at our house is praying for Alex (and the rest of you)!

Elk Horn Specialties said...

You guys Amaze me........... You are such a breath of fresh air!!! We love you to pieces and pray for Gator everyday and the rest of you!
Loves you!

Chrissie said...

Brynn, I love reading your posts, even though I'm a bawling mess when I'm done. My heart is so full of love for your family. That is so wonderful you are not slowing down for anything. Enjoy life, your living something I wished we were able to do with Kylie before she passed away. I'm very lucky to have met you while I was pregnant with her, you gave me so much hope.

Happy happy happy dance!!! Those antibodies are going down, every little number helps. I love you dearly and pray for your family.