Man, he is stingy with his kisses. I very rarely get a little smooch from him. But I try my darndest to steal as many as possible. After baths and he is all lotion-e and smells just so yummy that is prime smooch the baby time. Somehow he ended up with a nasty case of Croup right in the middle of summer. I can do most of the detective work at home, pulse ox testing and such, but this morning he was wheezing and cough so badly that I decide I should run him into be seen. Mind you, we didn't sleep and I still have that fear of being the parent who is always taking their kids in. But the doctor reassured me that this case of Croup was legit and he definitely need the oral steroid and then upper air way nebs to open his airway. He is finally sleeping and resting. My job now; to keep all the other people in this house who can catch things easily, away from the sicky. This is supposed to be my panicked face..
MayLee- Freak out with me now..... May is doing all the testing to be off oxygen... We met with Doctor Uchida (I have been on a wait list for months and a spot popped open, he is the best so of course the wait is long). He was so impressed that she didn't need to be hospitalized last winter and she was 96% in his office, that he wants to trial her off at night as well. So, at home she was on 3/4 liters of oxygen to sleep. Each night we have slowly been lowering her liter flow until she was at 1/4 liter and maintaing sats above 90%. She has done great so far. Last night we did the testing on room air. Her sats weren't that great. BOOOOO... I am assuming we won't be able to go off yet. It isn't too bad only at night. I do need to figure out another system for keeping her oxygen on her. I usually cut a tender grip in half, and it can be used for a couple of days. But I would love to have those off of her cheeks all together. I have researched a little and might try my hand at psewing a little hat to wear. It can't be a head band because that would slide off too easily. I think it also needs to breath well so she isn't super hot while she sleeps... I will be looking around trying to create something that works. She also will be going to Doctor Martin (cardiology) to check her heart and make sure that she doesn't show any signs of pulmonary artery issues and that her heart can handle the workload of her lungs without the extra oxygen push. She will also see Doctor Bollo to see how her tethered spinal cord syndrome and her pectus carnatum is progressing. Hopefully everything is just awesome.
She loves having the kids around while not in school and is gearing up for preschool with Miss Joey in the fall. She loves to play Ponies, Barbies, Littlest Pet shop and just about any other imaginary game. She can play for hours. She also loves to veg and watch her iPod. I have to really limit her because she could be on it for a long time. She loves to watch kids youtube. The shows with kids playing with their own ponies, littlest pet shop and Barbies.
UPDATE: I got a call today, May does not get to come off of oxygen. (Frownie face) and she is supposed to be on a pulse ox every night.. Plus also, she hasn't been feeling great, so she is up to a full liter and is only at 92%... I gave her her inhaler tonight which opened her lungs some.
Eden- She is going to Kindergarten.... I am so excited for her because she is completely thrilled. She lost a tooth and lets just say it was an event. Every day we had to asses the loose-ness and then decide if it could possibly come out. Finally I thought we should just floss it. I wedged the floss underneath and POP!!!! it shot me in the eye, but it was out and she was so happy to put it under her pillow for the tooth fairy.
Alex- This past couple of weeks must seem to blur together. We have been busy with so many things for Alex. He finished out the school year and finally did most of second grade, we ended up having him go back to second after the holidays because he simply had too many holes in his core education. He missed his entire second grade year and half of his first grade year. There was so much French that he couldn't understand and in English he was obviously behind. His size is about that of a second grader too. The only thing (I thought that he might be further ahead on was his maturity level. But No, he is pretty much the same there too). He ended the year on a N reading level and is just skirting by. But he is back and is learning everyday. I know third grade will be such a better year now that he has had second grade instruction. He has had quite a few doctors visits and a few not awesome run ins.
Alex also has the opportunity this year to be the Champion Child for Children's Miracle Network and Primary Childrens Hospital. He has the unique chance to share his story and thank those in the community and corporate sponsors for helping make Primary Children's Hospital so amazing. And we know exactly how those funds are collected and we know and have first hand knowledge of how they bless every life of kids who goes to PCH. For instance, Gator loves some of these things..... Child life, Physical therapy gym, music therapy, Bingo Wednesday, and the Playroom. I too have had an experience when I am sure angels must have been watching over me that day because, it was shortly after Alex's transplant. He was stable and was finally able to start thinking about coming home. The medications he would need are so extensive folks that I had to have a training on how to dole them out, store them and how to give them at proper times. Some interact with others meaning you can't just give a missed dose at any random time. I know lots of my friends and family know that there are alarms on my phone that go off at the craziest times. Those are med alarms to help my tired brain. Anyway, after my training I went down to the pharmacy to retrieve that large amounts of medications... One med, only one, ONE MEDICATION was more than my house payment for one months supply... And we had multiple with similar out of pocket expenses. We had a little money socked away because we knew that this might be so. However we had no idea what to plan for. I knew these meds were life saving to my son and I also knew eating would be important. So I had inner panic until the person said "I see this is going to be quite expensive, maybe go over and apply for some grants" I couldn't believe that such things existed. I ended up paying a fraction of what I was going to originally. Most people don't even know when they have paid their little dollar at Costco or Walmart and basically helped us so drastically. Most people don't know that they have helped other kids just like mine. I dare say most people don't know that if they have made even the smallest donation and somehow someone they love ends up going to the hospital they end up getting back their donation tenfold???? It's true folks. It is such a blessing. So being a Champion means we actually get to tell people about this. Alex gets to share why we think Primary Children's Hospital is the BEST. Part of being a Champion is going on tour. We get to go on two. Our first tour was to Washington DC. Ummmmmm.... It was the BOMB.... We did so much, I think we ran the kids into the ground with everything that went on. First of all we flew Delta... It was so much fun to meet the pilots, sit in their chairs, ask questions about all those buttons and be amazed that they can get a huge hunk of metal with a whole ton of people up in the air....
We laid out enough time to go swimming this day. Alex could go somewhere far away and all he wants to do is go swimming in the hotel pool.
He is so crazy.
Ryleigh- If going on tour with us and finishing school with awesome grades isn't enough ..
She also had a piano recital that she did so great at. She played lovely and I think she has a real talent for the piano.
Her teachers (Grandma Homer and Sarah Armes have been perfect)
*warning* going to talk about peep
I know she is going to die when I tell this story but it is hilarious and needs to be part of our family story. A couple of Sundays ago we decided to go up the canyon near our home and drive the winding roads and see the views. Well, we no sooner got 5 minutes up the canyon when Maylee tells us she has to go potty. She is an urgent situation all the time. She must wait until she has to go so bad when she tells us that we are always running to the nearest potty. AND we know the girl has bathroom issues. So there is no place to take her and we must wait a few minutes until we can find an appropriate place to pull off. When we do finally pull off both Eden and Alex also have to go... All three hop out and I help May get situated with a full moon exposed. What I didn't account for is the slight breeze. I swear it picks up just as she is going and everything comes blowing back on to MY foot.... Finished and relieved I look over to see Alex is finishing up his business and Eden appears to be standing the exact same way as Alex. Unfortunately with completely different results. Wrong plumbing my dear. Now there are two of us who have peep on us. We go up the canyon and decide to flip around when May announces that she has to go again. We head back down the canyon. Ry is glad for this bit of news because she too has to go. We find a spot, pull over and start getting everyone out. May looks a bit wet on her backside. We waited too long because she peed all over her booster, while she was walking out of the car, and a little on the ground. I strip of her clothing and get back up stuff from the back of the car. Alex hops out too. Goes again and gets back in. Ry heads off for a secluded spot and try as she might get stage freight and can't go. She hops back in the car deciding to hold it until we get home. You know that feeling of pain when you have to go so bad, but you can't go now cause you are in the car? It was that one time... Ry is crying cause she has to GO.... We pull over yet again and I tell her to squat behind the barrier and block anyones view. She totally peed near the bones of some dead animal. There is an art to going outside. Apparently an art that I have shielded my children from. We need to camp more. Maybe it was the fact that we haven't been able to really get a true camping experience with kids on oxygen and needing new hearts. I don't know, could be that.
Me- I just run... and then I try and clean up after the whirlwind. Not very successfully lately either... And I have been trying to keep up my garden.
So many yummy things to come.
Jeff- Besides working and doing his church calling, summer is busy because this is when you can actually ride your bike outside in Utah. So Jeff has been trying to get in miles to prepare for his big ride. Doing training rides and trying to keep up with the list of things I need help with. So far he has managed it all. With only a few upset stomach episodes on his part and exhaustion.. He if feeling a little more prepared after every ride.