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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, March 30, 2014

Little weekend review


Ry and daddy went to North Carolina last week. Jeff had a business conference there and his brother and family live there. We don't get to see them nearly enough so we decided to send Ry so she could be with her cousin Grace. They had a total blast. 
On Thursday Alex was awarded the Builder award. His school gives these awards to students who do exceptional things. Alex was nominated as the Builder for Listening to understand. We are so proud of you buddy! 


On Friday I was looking for something to keep this boy chill for five minutes... It made him happy and quiet for 3 hours. He kept saying he was engineering things.




Daddy brought bracelets home for Eden that you can decorate and add stickers to. She loved the sparkles. 

The Walker girls, Ryleigh and me, and Angie got to go down town for women's conference. A historic event as Ry was able to join us. 

And right this minute Gator and I are sitting in the RTU eating popcorn, Doritos, and chocolate Reese's peanut butter milk shakes and playing Cars Memory, watching movies and getting IVIG... 


This is called the rocket ship, it makes a noise like one is taking off. It also makes it so his IV doesn't hurt. It's awesome. 
Tomorrow he has an echo and clinic... Wish us luck! 

Thanks to Jeff and my mom who are holding down the forte and managing the girls. 









Thursday, March 27, 2014

We are lucky to be on this journey!

You are probably thinking... She has finally lost it! How is it possible to be LUCKY? 
Well....
I am going to tell you. 
I have mentioned before, that many people have lived a life time and don't get to experience half of the things that Alex has/gets to. A few things that many people miss out on is genuine kindness, generosity, feverrant prayer in his behalf, and just plain incredible thoughtfulness. He experiences a great deal of pain, frustration, and fear as well. But having such wonderful distractions from these things has made the ick parts so much more tolerable. 
We just got one of the neatest, most thoughtful, sweet things... Well I don't even have words in my head to explain it. 
Let me just give you the details and you will see what I mean. 

We call him Big Alex so we don't confuse him with our Alex. He is my cousin and is and always has been quick to smile, easy to spend time with, has one of the greatest laughs EVER (makes me smile just thinking about it), and is amazingly brave. When I think about Big Alex, I think of our childhood getting to be the big cousin helping out after he was born. Playing in the yard or dirt... He is always happy. The best part is that Gator shares a name with one fantastic guy! 
Big Alex is in Afghanistan (Gator calls it Af-gal-i-Stan) serving our country. I wish I knew more details about how many times he has been out, or what exactly he does (all I know is that it has been extremely dangerous in the past and could be now) 
Doing all that he is doing there, he thought of his cousin's little boy... 
He wrote me a while back on FB and said he wanted to send Alex something. When I told Gator this he said. "I hope it's a gun so I can go.. Trrtrrttrrrrtttrrr" I has to break it to him that I didn't think that would get through customs. To which he said "stupid customs". 
Guess what did come? 
This amazing flag was carried by Big Alex . Then dedicated to Gator. 
I bawled..,
I asked Gator if he understood what this meant and why it was special? We explained why we are free in this country and that freedom is because of the sacrifice of men and women willing to do scary things, risk their lives and leave their families. Big Alex is doing that for us. It means we get to choose to believe what we want, get medical care, and so much more. You could almost see it click
In his head and he ran downstairs and wrote this.... 


See, we are lucky! 



Wednesday, March 26, 2014

Babe

We have a friend who is single (and available) she was helping me out a little this week. We ran to Lowes to get some parts for a broken toilet handle. (My boyfriend/hubby usually manages all things home repair. But since he is at a convention... I think for wood?? I am playing the role of master plumber with Angie as my supporting actress) 
Car rides are fun because you can crank up the 'good' songs and chat inbetween.. Well Eden must have been thinking about this a while because she says to Ang, "You don't have a Babe, do you Ang?"  Angie thinks about it for a while and says "well, I don't know" Eden thinking even harder says "nope, you don't have a Babe, daddy is mom's babe." But then, not wanting to hurt Ang's feelings says "your doggies could be your babes". I had a great laugh about that because she used to call everyone's husbands the daddy. So it would be.. You don't have a daddy[at your house]... It was so confusing to her little brain that now she refers to husbands as Babes! 


May has now begun telling me she has an Eeeeeewww! Which means please change this ick on me. 
Oh, she doesn't love her oxygen all the time. But who could blame her? She ripped it off and I had to almost hog tie her to take off the old tender grip (little circle cheek sticker) then clean her skin, then apply the new tender grips, and last get the cannula back in place. I chased her around while she ran free for a little minute. 

Sorry for the blur.. Wiggly and aware that if I hold her long enough she will be subjected to the cannula. 

Those are some nice dark lips.. They should be the color of mine if she was oxygenating her body correctly. Also, see how dark her nose looks? This is another indicator. It's kind of hard to see in the other picture, but her feet turn a darker shade too. Lower extremities don't oxygenate if the body is working to push oxygen to major organs like the heart, brain, liver, kidneys... 
Some interesting things to see if you know what to look for. 




Monday, March 24, 2014

In charge of the pager

Normally daddy is in charge of the pager. It gives me serious anxiety. Maybe because I am worried it will go off and I will forget what I am supposed to do.....
I am in charge of the dang thing this week and I have turned around twice to go back home and retrieve it. I have dreamt it has gone off in my sleep. I have clipped and reclipped it to my pants (pulls my pants down) then my pants and underwear (I know way too much info on my clipping strategies), I have tried it on a thing around my neck and stuck it in the diaper bag. 
Today it went off!
I was out walking with friends and when it went off I panicked... It's a good thing friends were with me. Tam and Jen coached me through. With shaky hands I dialed the number and when someone answered I said "Hi... I am responding to the page" the voice on the other line sounding very confused said.."Is this neurology???" .. Well of course I wasn't... Shoot... The content of my stomache was turning over and over... "No, this is the number to a cardiac parent pager... We are waiting for a new heart"... He said sorry and hung up... Whaaaaaa? 
So I guess that was just a trial run. I am happy to say I am way better at handling things than I originally thought.. Sheesh! Way to send me into sheer panick. 

How to feel?

Never having been in a situation we are facing, I sometimes try and wrap my brain around what is going on and the enormity of it all. Because, let's face the reality of it, my little son needs a new heart. This can't be purchased, created, or generated in any fashion. This requires a gift... A choice, rather... It is for a family in their most vulnerable and incredibly difficult moment to make a choice that has to be extremely selfless. This heart has to come from a child the same size as Gator. They could be a little older or a little younger. This heart could come as a result of a tragity or accident. It could come from a boy or a girl. It could come from any race. These things are so minor compared to the action by which this heart will become Gators... LOVE.. Someone out there loves their little person as dearly as I love mine. They understand that love won't take away all the sadness they feel, but in some way we plan on filling the cracks of their broken hearts with all the love and gratitude we can. 
Gator is already so blessed.. I feel like he has had so many incredible opportunities. Some people live long life's and don't get to experience as many wonderful things as he, and we, as his family have. 
He has a little friend who wanted to help him. Friday the boys had a play date scheduled. When P showed up to the house he was carrying a ziplock full of cash... "Here, this is for your new heart... I have been doing jobs and this is all my tooth fairy money too. I get two of these for each tooth.(points to silver dollars). I lost 5 teeth so far. But, I am still gonna do more jobs to get more!" Everything this sweet six year old had earned was in that ziplock and handed over to his friend. I didn't want to take it because that was hard earned and carefully saved. I also felt like I couldn't turn away his desire to help. I learned a valuable lesson from this friend. I should give as much as I can. I wish Gator understood things like this better but he is still young. I understand and I will do my part to teach my family.

Wow that was heavy... On to the lighter part of this post.  

I got some new fancy colors for the next holiday.. Off went the green for St. Patricks... 


Now on to pastels for Easter...

My grill is gonna be so awesome! Plus, I am pretty sure I have the nicest Orthodontist ever! 

May is so busy lately.. She is a whirlwind. She is talking up a storm and is finally talking like a Homer. Each day she comes up with a dozen new words and it amazes me the rate at which she is learning things. She refused to sign. I have tried on many occasion to have her sign but she just looks at me like she has no clue why I am making motions. I don't want to give up just yet... But, maybe she just won't be a signer. Some of the words she uses and well are...
Mine
Stinky
Ouch
Eeeewww
Ry
Go
Baba (drink) 
Stuck
She had to learn the last one because she calls out to me when things like this happen. Notice how many times her tubing is wrapped around the leg of my entry table? 


She is so yummy, even if she is tricky with her tubing. 


Eden has been in heaven since we purchased Frozen. It has the same effect on her as Little Mermaid did on me. She is my best hug! 

Gator had another infusion yesterday. It turned out to be a really fast one. He hasn't had any nasty side effects with Retuximab. I am hoping his 2nd go with IVIG goes better. That will be next Sunday to Monday. Monday morning he has clinic... Then Monday afternoon May has her last Synagis. 

As long as we schedule things it seems like we can keep up on it all. 







Sunday, March 16, 2014

Over the moon

When our friends and Jeff's business partner Nic and his wife Marti, approached us with the idea of doing a fundraiser to support all the medical expenses accociated with transplant I was very.... Unable to communicate my thoughts because....  I was embarrassed I couldn't provide alone. I was scared because the amount of medical care costs are enormous. I am humbled that there are so many willing to help shoulder the burden. I was floored by the generosity of others. I am surprised by the acceptance of friends young and old who patiently try to understand exactly what is going on. I am buoyed by so much verbal love. I am so grateful that someone took this heavy burden upon themselves and Marti,( who is an angel straight from heaven) could mastermind and organize then call other earth angels or Gators Groupies to help out. Then there is all the supporters! We have appreciated each and every prayer, good thought, mojo, rain dance, good vibe, monetary donation (absolutly incredible), visit, baby sitting, meal, phone call, nice word, play date.....The list goes on and on and on... 
In some ways I want every single person I know to feel and experience this out pouring of generosity, kind heartedness and love. I would hate to wish the rest of this experience on someone else. 
I tried to explain how this all feels to a friend. How I wish there was more than thank you to express how grateful I am. She has wisdom that made me just hug her.. There will be a time when we are able to serve and give all this love to someone else... You better believe I will too...
My eyes leak all the time now... I am sure it's because there isn't any more room inside me... Love, graditude, humility, and a little crazy leak right out.

Jeff wanted to let all those who annonymously gave to know... Because we can't give you a hug or send you a thank you card... We thank you dearly!!! 


Saturday, March 15, 2014

Eden does some selfies

Found about 209 of these gems... I narrowed it down for your viewing pleasure! 













The day Ry helped


For about a week and a half now, Ry has been planning and planning. She wanted to find a way to help our family and her little brother. She thought of a couple ideas and finally came up with a sweet shop. She recruited friend, planned treats, decided how to display things by finding things she liked on Pinterest. Friday we baked like crazy. 
She did rice crispy treats, popcorn balls, brownies, cupcakes and candy... 
Finishing up...
It was sooooo cold but the girls stuck it out!!!
Ellie R. 
Whitney, Maddie, Ellie J... Such sweet friends for helping out! 


The goods!!!

This is a heart brother. Ry and Mas are the same age. Their brothers just younger than them both have HLHS... Mas understands Ry in a sweet and tender way. He gets her frustration and is so kind to her. (She may also think he is pretty cute). She will totally die that I just said that. Gator and Teag have a neat relationship too. They are the little brothers. Seeing Teag be in the hospital and be so brave makes Gator want to be happy there too. We also saw a couple others heart friends.. Thatch's momma and daddy, and Arianna's family. They are all so fantastic... 

Eden helped count.. 1..2..3..16..18..27...70....70...70...27....70-29... 

Ry counted and recounted. The amount was staggering to her. Thank you all so much. The kind hearts and generosity of our neighbors and friends is so incredible. There were so many highlights to this experience. Ry's French teacher even came. He is such a great example of going beyond the classroom and supporting his students. Three of Ry's helpers are fellow French speakers. So having these two teachers here meant the world to them.
Ry also saw immediate application of that hard earned money. We had to run to the RX to pick up one of Gators medications. 
Thank you to each person who supported Ry... Thank you for each person who gave to her, but ultimately gave to helping Gator get a new heart. 










Thursday, March 13, 2014

Early lights out

7:30 and my sleepers must need some catch up rest... The other two are snuggled together watching a show downstairs. The sun hasn't even gone to sleep yet.. 



Tuesday, March 11, 2014

A much needed break

It's been.....
A while.....
since I have recorded our family happenings. Not because we haven't had much going on, mostly because sometimes it's easier to just do something or things without planning the dialogue.
Right before the kids tracked on we visited my Groesbeck grandparents. It is one of my favorite places to visit. They have a beautiful home that has always felt huge. I don't know how my grandma manages it all. They have been in this home for 40+ years. They have a huge garden in back that they meticulously take care of... And... A swing made from an old tire. I always felt like I was flying. We just made it a day-cation because I never want to make them crazy with all that IS Homer children. 

The kids loved playing with toys that I played with when I was little. The really real Little People from Fisher Price. 

May loved pulling out the newspaper. Of course it was the first time she had seen such a thing. As we move into an era with less and less paper, things like news print will fade away:) when she wasn't playing in paper she was trying to navigate the stairs. Those stairs I used to slide down on my belly. My grandpa was always so worried we would hurt ourselves or ruin the carpet... He would tease us and say... " you better not do that any more, or else I will be forced to hang ya by your toenails on the clothes line" not ever one time, did I see that happen so I knew I was pretty safe calling his bluff and sliding anyway. I was so naughty. 


Eden loved having pink milk and all of grandmas treats. Not surprised by that one really. She takes after her momma.

Alex loved the swing. Grandma Clawson even took him out there in the freezing cold to give him underdogs. You could hear him squealing all the way inside. 
We decided to treat grandma and grandpa to lunch. Ry is such an excellent helper. 

My grandma is one of my heroes. Plus, she even has super talents.. She can eat popcorn, smile and sleep all at one time.. 


Alex had his first round of Desensitizing.. He asked that daddy go with him. So they could have some 'man' time. Jeff is such a great dad, he really try's to do all that he can to take care of his family... Own a business and take care of finances... Psshhhh, he's got that.... Go to the hospital with child who needs him.. No problem... Help me with household chores... Done and done! It is endless.
Gator had a rough reaction to his first treatment. He barfed all night long then fevered the next day. We kicked it with Tylenol. I made a call to TT (transplant team) who said to take him in for labs and an anti-Xa on Monday. I did let him go to school a couple if hours before I picked him up for those tests. He was feeling so much better and he really wants to be at school. Lucky for us, the last treatment he had called Retuximab, did not cause him to feel the same way. The TT wanted us to go in for his infusion earlier than we had originally planned so they could watch him better. I really try to accommodate and understand, but he really wanted to not miss his Dr Seuss party at school, or Grandma H's birthday dinner. I think we made the right choice. He had a really neat experience. He helped PCH at IHOP. He got to meet Not-so-Big-budah and the Mayor of Murry even gave him the key to the city. We have no clue where the door to the city is, but Gator would love to try it. He was pretty nervous at first but ended up having a really great time. He decorated pancakes, talked to all the pretty girls from the Murry High Cheer squad, hung out with policemen and firefighters, and got free pancakes for a whole year. 





Jeff is sad to see her go. He is selling one of his bikes. It took him some time before he was ready. Now it will be documented here forever. 

Eden has been having some eczema issues for a really long time. I tried everything.. It just wouldn't clear up. I hate to take the kids to the doctor unless I am sure I can't manage it. I have a weird phobia of someone thinking I look for reasons to take the kids in... Well it's been months and I still couldn't get this better. In fact it just got worse and worse... Her little tights stuck to it on Sunday and we had to rip them off which caused it to ooze... No good.. So I finally gave in an called. 
Empetigo... Eewww. Oral antibiotics and topical antibiotic cream. This is after one treatment. You can see right where the bandage line stopped. Sorry Munchie, mommy Fail!
She says the funniest things. She gets her words all mixed up. Here are a few.
Co co low low = Coca Cola
Bwek sass = breakfast
Gwenna ba = granola bar
Ho wheels = high heels

May is talking now too. I was so worried because she doesn't speak early like Eden. She can say: yup, nope, thank you, please, stinks, amen and she sings "Gooooo Goooooo" for Let it Go! 

I think I am caught up now!! Whew!