Legos gone wild.

Ok, we've tried to definitely embrace picking our battles this summer. And for the most part, it's been pretty easy....but today it was time for Jackson to finally get his room clean. I went into work, but I wish I had gotten a picture of the start. He had legos ALL OVER HIS FLOOR. They were all in a specific place, and all had a reason for being there. But I did too. I was tired of stepping over legos as we tried to get him into bed. So my instructions this morning were to make sure your room was clean by the time I got home. I came home to make a quick lunch and saw the first picture. He was in the process of pulling out everything he still needed to play with. The jokes on me...I didn't say the family room or play room had to be clean!

When I got home a few hours later, his room was clean!!!!

But he still had quite a few piles out in the family room that he insisted were for him to play with. My  parenting skills were hungry, so I handed it over to Dave who was able to talk him into pulling out the main ones that he wanted to play with and putting the others away. LOL. Below is his pile of essentials. He agreed that 7:30pm was the time when he would put them all away (I can tell you that we are less than an hour away from that time and he is still pulling his toys out to play....I don't see it ending well.)

He decided that the best place to play would be behind the couch, but he has quite a few things to move. He decided that using his shirt was the best way to transport all the legos behind my couch.

This was the scene before dinner. Not too bad...

After dinner the pile just got larger...

Here's to hoping the 7:30 time doesn't make for a cleanup meltdown. I don't have it in me today.

Dance Camp

Miss Addison did dance camp for three weeks during July. She loved it, despite the lack of smiles at her performances on the last day. They had dress up days and she had a good time coming up with her costumes. They got to do ballet, jazz, hip hop, tumbling and zumba. Throw in snacks and arts and crafts, and we have a super exhausted dancer at the end! 

Grandma H was able to come down the day of her last performance and we had fun watching her perform. Her latest bought with her sinuses was starting to show itself that day though, which showed in her "kind of" smile the whole time! But I know she had fun and she loved it, and I know that next summer she will be counting down the days to dance camp, 2016!

"Unremarkable" and next steps.

We had our follow up with the pulmonologist yesterday. Grandma H drove down to go with us because Dave was swamped at work. We turned it into a quick overnighter and had a fun stop at Barnes and Noble, Hobby Lobby and dinner at Islands. The hotel is 2 minutes from the Hospital which makes it fast, and they came through with dessert!! Ice cream sundaes for the kids, glass of wine for the adults. Definitely a win-win!

So where are we? Still in the land of the unknown. He was very attentive and took everything we had to say and report in, as well as reviewing his records again. Genetics came back "unremarkable." This basically means that nothing showed up on his genetics, but because they can't test for all the genetic mutations, atypical can't be ruled out yet. (That would have been WAY too easy!) He definitely spent a lot of time processing and thinking. This is definitely not a puzzle with a clear picture on the top of the box for us to put together. 

Next steps now are multi-fold. First, is to have a second sweat test done. He said he doesn't have any reason to believe that it will be much different. But, if it normal, that would be a plus. They are going to get us on the cancelation list to hopefully get us in sooner, so I am crossing my fingers we can get in before school starts... If the test comes back similar to his first test, Jackson will have a bronchoscopy and a chest CT. Our doctor is also going to talk with our ENT about getting a sinus culture, which could potentially happen at the same time as the bronchoscopy, even possibly independent of the sweat test results. While we were there, they did a throat swab (sputum test) to check the junk going down his throat. My guess is it should be good right now as he just finished antibiotics....but who knows. Our doctor is also referring him for an ultrasound, which I should be able to call and schedule Monday. Spit results should be available middle of next week. With school starting relatively soon, and schedules starting to get crazy, I am going to push the nurse to at least try and get a timeline for the various scenarios. 

Basically, we seem to be doing a good job despite the fact that he keeps getting infections. At this point, I've resigned myself to the fact that it's going to be awhile before we have any definite answers. And no matter what the answers we get, things/treatment may not change. He recommended that we call our ENT next time he has a sinus thing going on to see what he recommends, but that our GP seems to be doing a good job. I did ask our doctor point blank this time what his "diagnostic impression" was at this point, and he said he is 50-50. 

The kicker to all of this is hearing Jackson make comments like, "I'll just never feel good" or telling Addison, "you never feel as sick as I do all the time." That's why we keep pushing for answers. At least if there is a "reason" Jackson will have a better time making sense of it for himself. But we have a plan for now, to keep on figuring this out. So that's what we will do!

Summer Candids

Plans are made to be changed, right? This summer has definitely been one of those. We've been home more than we had planned, only making it to the cabin once over Father's Day weekend. We will get to the beach early in August, and then unfortunately it's time to go back to work and then school. But we have had fun and made the most of being home! 

Addie and I got long over due pedicures...I promise I will not let it go so long next time!

Addie lost her two top front teeth in the matter of an hour.

I created a superhero cape...channel my inner creativity.

Hanging with my girl!

Jackson posted guards at his door to protect his room from the attacker known as Zoey.

Addison spent time listening to tunes and "doing her thing."

Jackson spent a lot of time coloring.

Sometimes you just need an extra large bear hug!

And we cleaned. I found lots of treasures, this was one! I love the heart on her arm....we used to do that every day during preschool!

We have a little bit of summer left. The kids have been in the pool a lot, and there have been video games, nerf wars and crafts. I wonder what we can do over the next few weeks to up the anty...time will tell.

Marco Polo

Marco Polo has become the game of the summer in our pool. So much so that I wonder how it will go when others come over because that is "all" Jackson wants to play. He tries to convince everyone to play. Addie just loves to be in the pool, she doesn't care what they play! We have had to make some rules, like "no goggles on when you are it" because it's harder to tell if you are peeking when you have goggles on. And you know peeking is a HUGE deal. But they love it, and I love to watch and listen! Jackson and Addison are getting really good at swimming quietly by Dave as he tries to "listen" to them and tag them. It's definitely a great way to end the day.

Dave was it and Jackson was watching for the "peeking" eyes.

Spitting water through her new hole in her mouth!

And me, yes me! Just watching and listening!!!

Last meet of the summer

This last Thursday we got to cheer on Addison at her last meet of the summer. It was a fast meet!!! Addie swam the butterfly, backstroke and breast stroke. There was only one other team here this time,  so they combined a lot of the races. Addison held her own in all of her races and came in in the middle of the heat each time! There will definitely be more races in her future, of that I'm certain.

Butterfly

Waiting for the backstroke

Backstroke

Getting silly with the goggles

"Can you see my eyes?"

Checking out the competition during the breast stroke.

Gaining

In our process of waiting we had our follow up with the GI, the doctor who initiated everything. He didn't give us any results, they weren't in yet. But he is concerned about Jackson's weight. He dropped again, and he doesn't have anything to drop. He added an appetite stimulant, so we are crossing our fingers that it helps. I was surprised because he isn't eating any less than he was, in fact, he is eating more because lunch is definitely easier for him at home (he doesn't like your traditional lunch foods, but doesn't want to take what he likes to school because it's not what everyone else eats). And, he's definitely not as active right now just because of the weather and he likes to play his imaginext and legos. The doctor explained to Jackson why he needs to work on eating more to gain weight or he may have to help more. We don't want that! 

I made my phone call on Monday to the pulmonologist. They called back yesterday and the nurse was awesome. She called the genetic lab and called me back. The lab expects to be done next week and will call the nurse to let her know when they send over the results. So at least we know...one more week. In the meantime, we are eating! He definitely had more of an appetite yesterday, so hopefully today is the same. Drowsiness is a possible side effect that will negate the possible benefit, so I'm hoping that doesn't happen here!!!! Here's to high calorie food!!!

"Meet"ing the challenge!

Addie had her second meet earlier this week. Since I had a better idea of what goes on, we were definitely better prepared! She swam the 25 butterfly, back and freestyle. She loves the butterfly, which I am just in awe of because I can't coordinate my arms and legs enough to make it work. It was her first event, and was towards the beginning of the meet (definitely a plus). She had her nervous face on while waiting to go out to the lanes. But she got out there....and came in 1st place in her heat!

Waiting....

Rocking the butterfly.

Embarrassed because we won't stop telling her good job!

After the butterfly, she just had to wait for all the bigger kids to go and then it was time for her backstroke. Most of them don't want to swim the backstroke, and neither did she (I signed her up). But I think she does a pretty good job. She told me before she went out there that she doesn't swim straight...well, that's true. But most of them didn't. She was nervous again about swimming, but one again she got out there and tackled it. She rocked and came in 1st in her heat! Once we get her straightened out and kicking the whole time she will be unstoppable. 

Being patient.

Nervous again.

Backstroke

All done!!!

We had a bit more of a wait before the freestyle because they had to go through all of the breaststroke. She had time for a snow cone and had a few more snacks. She hung out with us and played a few hand games with Jackson while we waited. She was definitely excited about getting out there to swim her freestyle. She came in third in her heat for this one!

hanging out with mom!

Addie and Sadie

Snow cone tongue!

Having fun!!!

Freestyle as the sun is setting.

All done!

She told me yesterday swimming is "her thing." And she definitely loves to be out there. She is my fish for sure. It kind of makes me crack up because she fought learning to swim a lot. In fact, in the beginning she wanted nothing to do with the water. I'm so glad she loves it because I love to watch her. Dave said he was counting her strokes (ok, he used another term) and he was surprised how strong she is. This year we've been able to do the in town meets only....I have a feeling I need to be prepared to go to all of them next year. She loves it that much. And we love to watch her, although I'm still not liking sitting in the heat! But I'll get over it. 

Happy 4th of July!!

We had a fun visit from Grandma and Grandpa H over the 4th of July this year. They came down Friday afternoon and stayed until Sunday. We enjoyed the pool, tacos and hanging out! Saturday brought more pool time, BBQ with friends and fireworks. I was terrible about taking pictures, and only got one the whole weekend. But the laughter from the kids while splashing in the pool, the smells of food smoking and cooking on the grill and the conversation was well worth no other pictures.