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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.

Friday, May 29, 2015

Biopsy day

Gator is having a big ol' biospy today. This  is a little different from his regular monthly biopsy. usually we can go through his neck and its pretty fast and usually easier to recover from. Today the plan is to go through the groin and they will be taking small bits of tissue from all around his heart. They will also be looking at his pulmonary arteries. I am hopeful that everything looks great and that we can still hear those magical "no rejection" words. There is always a caution that there can be a little rejection. We were the first case this morning, we made it to the hosptial at 5:55 with a check in time of 6:00 am. Alex was in great spirits and found a friend to play video games with. When we got through most of the check in and it was time to change he got a little pouty. Those hospital pajamas are "breezy". I forgot that detail and didn't bring his jacket with us. I  promised he only had to wear the shirt until we walked through the hospital. As soon as we made it to cath lab he wanted it OFF. He picked birthday cake air and I left him.... I get to hang until he is done. It's nice to sit here and see so many kind and familiar faces. 

Last week MayLee saw her Pulmonologist. We talked about all the advancements and classes he seen and been to in regards to NEHI. I am thankful he is doing so much to understand this very rare lung disorder. May charmed her way into the hearts of every nurse and doctor. She chatted their ears off and told stories. I wish I would have made a video because she really does talk and talk. In Doctor Uchidas words "we are doing beautifully with her". We need to do a follow up CT but considering baby on the way we decided to wait and talk again in two months. There are some new genetic tests that we can do, they might be pretty expensive and because they won't change anything by way of diagnosis or treatment we will probably opt to not have them done. These tests are elective and not part of a study, something that is only informative to our family and won't help other kids, so we will hold off for now. We got the OK to try and wean day time oxygen. I jumped right on that when we got home. I turned off her concentrator and checked her Sats to see her room air baseline... She is normally on 1 liter. We  need her Saturations to stay above 95. It was sort of a bummer to check her and have her dip to 88. I put her back on her O's and was able to get her to 1/2 liter... We have stayed there for a couple of days and I checked her yesterday and she was 92 so i had to bump her back to 3/4 liter. I guess this will be a pretty slow wean. 

We had an amazing Memorial day. The kids noticed the flag in our yard and asked why it was out there. It was a great way explain what Memorial day is and why it's important for our family. We are so thankful for those in the service who have blessed our life. We talked about 'Big Alex' and his help in keeping our country a safe and happy place to live. We also talked about Alex's donor and donor family. 

Wednesday, May 20, 2015

We had sunshine once

It's been a very rainy last couple of weeks. Right before the awesome rain that greened up our lawn so nicely that we haven't had to turn our sprinkles on yet, there was sunshine once. The kids (minus Ry who was at school) found their swim suits and played with water guns, ran through the sprinkler and jumped on the tramp.. Hours together outside and happy. 









Jeff and Gator were support for an all ladies bike ride called the Goldilocks. It poured rain that morning. They picked up a bunch of riders. Most needing to be treated for hypothermia. 
The rain has put a hold on training for daddy. It didn't stop him from doing the Grande Fondo. The course came right by our house. I took the kids over to cheer for him. 

Ry had a French night at school. The students displayed art, gave short speeches and we had French treats. 
My little stinker.. She found a stamp and decided to... Ummmm... Eat it? 

Plus anytime she is tube free, she looks so different I have to snap a little photo. 
Eden finished off her first year of preschool. She had her program tonight. This year she learned how to write her name, can say the Pledge of Allegiance, knows the days of the week, can say most of the letter sounds and can follow directions. I have no doubt she will do amazing things. 

I am not going to complain too much.. I am huge, and uncomfortable. Just three more weeks till baby gets here.. Three more weeks people.. There is an end in sight. 
Ry helped her momma out! Thanks for my cute toes.. I start NST tomorrow..  

Last bit of news, we painted the nursery today... Just need to do touch ups and get the room set up. The kids are off track. Although we haven't been able to go too many places. Alex has had low WBC and that means fighting infection or illness would be tough. So we hang out at home and try our best not to drive each other crazy. 














Friday, May 15, 2015

It's just waiting for me!!

Here is a little conversation with Eden..
E- Momma can you help me button my purse, I am taking it with me where ever I go. 
Me- really? Why is that?
E- well it has my money in it and if we go to a store I NEED to buy something. I do, I have money and it's just waiting for me. Waiting mom... It's just sitting there...

Cracks me up.. I looked at her money and it's about .36 cents.. She is going to buy something people. 

Clinic and IVIG treatment

Gator had clinic on Monday.. He is doing great! His health and overall well being is better than its been his whole life. Blood pressure looks great, magnesium levels are good, liver is back up and great, he is tan and has energy... 
Treatment went smoothly.. It was a sleep over in the RTU.. He played video games and had room service bring him lots of yummy treats. Now we wait on a DSA.. Or donor specific antibody count. Hopefully it will continue to go down. 

Ry has continues to do well with her braces and expander.. This is Ry's chalk art. 

Eden is busy busy. I try and catch her in pictures, she is so active I can hardly keep up with her. 

MayLee is my helper and wants to "be big too".