"Keep Calm and Dance" Night 1

Ahhh, recital time! This past year, we cut out one of Addie's dance classes and what a difference it made for recital. She only had three costumes to worry about. Hair went from a pony to a bun (it cracks me up that I am writing about hair...but it was stressful last year to get the costume and hair done before she had to be on stage again) which was completely doable! The theme was "Keep Calm and Dance" and we did. 

First night, Addie was tired. I got some smiles backstage, but was wishing for bigger smiles on stage. Her acro class was her first performance, and while warming up the first night she "hurt" her wrist. Call it a pull, strain, twist, sprain...it hurt a little. But she went out there and did her thing. That's why she said her smile was gone. It was hurting. We got through the first night and wrapped it up when we got home. There's nothing that good old sports wrap won't fix! 

Evie and Mal from Descendents

Razzle Dazzle

Bippity, Boppity Boo!

We didn't lose any costume parts and left looking forward to the next night!

Another year is in the books!

Now that school is out and we have report cards in hand, it's official. We are done with 2nd and 4th grade! It's been quite the year, and both of you have thrived. You both continue to love school, but you are over the moon to have summer vacation.

So we are relishing in being home. I am still working some, but you guys are hanging out. We have a schedule and you are getting things done. There is a lot of imagination, lego building, doll playing, coloring, arts and crafts and swimming going on. Summer homework is happening as well as some xbox and iPad time. Books are everywhere, and while they don't get picked up as much as I would like (remember, I'm a bookworm) you both are turning to them more frequently.

We are going to continue to sleep in (yes, 6:30...we've even had one 7:30) and swim. We are going to enjoy each other until we need a break (yes, that happens too). We are going to use the pool as the excuse not to shower (for the kids anyways). We are going to stay in our PJ's all day if we want. We are going to maintain as much of an "unscheduled schedule" as we can. And I know it's going to go too fast!!!! Next thing you know, it will be time for first day of school pictures for 3rd and 5th grade. HOLY COW!!!!

Pancreatic problems

We got the results of Jackson's latest study for the pulmonologist. He wanted to have a better idea what he was doing with the pancreatic enzymes. What we know now is that the enzymes won't be going away anytime soon. Jackson fecal elastase was a 108. For reference, anything above a 200 is considered normal, anything from 100 - 200 is considered moderate pancreatic insufficiency and anything below 100 is considered severe pancreatic insufficiency. So Jackson now has moderate pancreatic insufficiency which means that his pancreas is not functioning enough to produce the enzymes needed to digest and use the food he eats...hence the enzymes. Not the news I was hoping for! The pulmonologist also looked over the immunology labs and said that he would keep watching as there could be something else there to look into. He didn't feel the labs were related to "maybe CF," that it wasn't normally seen. Although the nurse chuckled and said that they know Jackson doesn't follow the "normal" protocol.

What cracks me up, or in all actuality frustrates me to no end, is that every doctor keeps passing the buck if you will. GI says "let's wait and see what Pulmonology says." Immunologist says "it's related to his CF." Pulmonology says "let's keep watching and waiting." ENT changes treatment, reaches out to everyone and here we are. So we repeat the sweat test in the fall. We repeat the immunology labs in the fall. We keep doing the nebulizer (which Jackson has started kind of doing on his own...we have to be there, but he is now holding the meds thing and turning it on and off). Jackson is also getting better at recognizing what he is feeling and telling us what it is (like yesterday, tummy/chest hurt but he said it felt like he was backed up). 

So there we are. Addie has her procedures in a few weeks and then a follow up with the pulmonologist later that week. Will that tell us anything? I don't know. Only time will tell.

That time of year!

It is definitely that time of year....that time of year when we are all tired! The kids are tired and ready to be done with school. I'm tired and just crossing my fingers that all of my seniors really pass their classes. Addie was sitting outside the other afternoon on the table with Zoey, and she just has the "I'm so ready for a break" look! Here's to 6 more days. We can do it!!!

Mid-week fishing

What do you do when your dad's friend offers to take you out on his boat for some fishing? Why you snatch that up! Early this week, Dave got to pull Jackson out of school about an hour early and they went fishing. It was a new thing for Dave, as he has never fished out of a boat and on the river...Jackson just loved it!!!!

Talk about a good way to spend an almost summer day.

Changing DIrections

Last week I put in a call to the ENT to follow up after our visit with the immunologist and also because his sinuses were still just hurting. Towards the end of the week, his ears started to bother him also. They called back Friday and ended up scheduling him in for yesterday. 

Jackson's sinuses were still hurting yesterday, and he and I talked about how he needed to start telling his doctor what/where things are hurting and bothering him. After a promised trip to the book store, he agreed (talking with doctors, especially about how he feels is not a strength). I was very proud of him when Dr.P asked him what hurt and he told him, "my sinuses" and showed him exactly where it hurt. His ears looked good (whew), sinuses weren't terrible...he said Jackson has a "rash/inflammation" inside which can happen with sinusitis and his left side is pretty junky/crusty (TMI). After the exam, Jackson tuned out a bit and we discussed his latest appointments.

We discussed the results from the Immunologist and Pulmonologist. Dr.P kept looking at Jackson's face (he gets a red "rash" on his cheeks and across his nose when his sinuses are hurting that honestly resembles a "butterfly rash"). He commented on maybe we need to chase down something different. I asked about ciliary diseases, and he said yes, they are rare but present, but that typically they are in the hospital...very sick. He was fairly confident that Jackson didn't fit the profile for that. He threw out a few other disorders that he talked through and then circled back. He talked about auto-immune disorders and seemed a little surprised when I told him that his panels for that had been looked at. I explained that I have auto-immune disorders, and when all of this started, that was one of the first things I asked. It has been a while, but all of his labs looked good then. During our conversation about the pulmonologist, we started talking about the fecal study and how depending on that it could be a "game changer for both of them." Dr.P took that in and clarified, "both of them?" (I thought we had talked about this, but maybe not). Yes. Both of them. He asked if both had an abnormal sweat test, to which I said yes. I explained what Dr.G (pulmonologist) was doing with Addison right now and what was planned with GI over the summer.

As Dr.P took it all in, you could see his wheels churning. He thought some more and then said he didn't think we needed to chase something new down right now. He said his plan was never to have Jackson on antibiotics all the time through the nebulizer, but he acknowledged that it was definitely helping. For now, we finish the current nebulizer meds (with antibiotics) and then go straight into nebulizing the mucolytic + steroid (minus the antibiotics) for a few months. He then started talking about our conversation we had a while back about "changing expectations." And while he did say he's not 100% going to say we are at the point where we need to entirely change our expectations, we are to the point where we need to change direction. We need to change from treating this as if it will get better and go away, to basically treating it to where Jackson will feel better. 

This is still sinking in. It's the first time one of the doctors have basically said it's not going away, whatever "it" is. I'm still processing, but he basically verified what I've thought for a long time. It's not going away (at least anytime soon). I find myself wondering these days if it's real because they don't act "sick" all of the time. And yet, Jackson put it best this morning on the way to school when we were talking about telling your teacher if you didn't feel well. He said, "if I told my teacher all the times I wasn't feeling well, no one would believe me. It's all the time. I'm not a complainer." And though Addison was quiet, this is her too. They are troopers and resilient to say the least. They don't want anyone else to know they don't feel well. So they fake it and hold it together until they can't. And I'm their safe spot, where they don't have to hold it together. That direction will never change. 

Fishing in style

After the Derby party, Dave took Jackson to one of the golf course ponds to fish. They have been practicing his casting in the pool, and he's getting good with his slow and easy cast. It's been impressive. But what cracked me up the most was his hat. He insisted he was wearing it, so he did! I happen to think he's the most handsome fisherman out there!!!