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!!!

Party time...Derby Style

Dressing up in costume isn't really our thing. So when we were invited to go to a Kentucky Derby B-day party I just chuckled. I figured Addie and I would wear a hat and that was about it. I was shocked when Dave asked me to pick up a hat and suspenders for him also. Say what?!?!?! Yup. He asked for suspenders. I found some and having never shopped in the suspender area I was surprised at how many options they had (and very grateful I had a friend with me who knew exactly where they were).  Come to find out Grandma and Grandpa B also were going, so that made "hats" easier because Grandma offered to help Addie decorate her hat. I also picked Jackson up a hat, although if I'm being honest it was more so he didn't get mad. I didn't really think he would wear it at all. 

Jackson actually went to a friend's house for part of the afternoon and then came to the party after. He tried on his hat before he went and decided it was pretty good. So good in fact that he wore it to his friends, left it in the car for the party and then wore it out fishing later last night. (He even put it on today when he went outside...maybe he has found his new style). But I did get him to stop long enough for me to get one picture...because a mom's got to have that, right?

Addie decorated her hat with Grandma in the morning and came home excited that she would be able to take the flowers off and wear her hat at the beach. She had a pretty good time getting into character!

Dave and I dolled up and I even got some smiles from him as we took pictures. He had an opinion as he was getting dressed which made me crack up because he had planned on wearing black pants (but didn't tell me that), and I threw a wrench in things because I bought blue suspenders. My mind reading skills which shopping apparently failed! I think he pulled his outfit together quite smashingly! After a few pictures, we were off to the Derby!

Addie had a great time taking pictures, playing with Wendy (age 3) and Avery (age 2.5) and playing with the dogs. It was nice to catch up with good friends. We don't see each other nearly as often as we did when we first moved here, but all of their girls watched Jackson and Addison. Virginia, aka Nama, is like another grandma to them. I just love that we have friends here that Jackson and Addison love and are safe with. We were celebrating Nama's birthday (75), and such a fun day! 

Definitely a fun way to celebrate and our weather cooperated! The wind wasn't too bad, and the heat was almost non-existent. Such an amazing start to May!!

Breathing deeper

About two weeks ago we doctored again. I had a good conversation with our ENT about a month ago and he wanted us to follow up with the Allergist/Immunologist that Jackson saw about 2.5 years ago to see if there was anything else we were missing or could do differently to help his sinuses. Also, a fresh set of eyes never hurts. Of course the doctor wasn't scheduling until July, but we were able to get into see his PA within a week so that's what we did. After nearly an hour's appointment, she ordered labs (ended up being 7 vials of blood, and they actually weighed him to make sure they could draw that much). The labs covered allergies (only since she was already drawing them), all the Immunology panels and the vaccine levels). They also ordered a sinus CT which ended up being changed to a sinus X-ray. 

While we were waiting for all the results, both kids had their 6 month follow up with the pulmonologist. Besides running one more follow up study, things are status quo with Jackson. The pulmonologist likes the nebulizer med (it now also has a mucolytic in it) our ENT has Jackson on when he needs it. He was somewhat surprised at how well Jackson has responded to the pancreatic enzymes, but did state that there are times when they see kids do well with tests that don't show they should. He said sometimes kids have low-normal results, but still need the enzymes to keep up with their body. That's the study he wants to repeat so he can get a better idea what he needs to do with the enzymes. He said if Jackson's pancreatic function is low, it could be a "game changer for both of them." 

Addison hasn't been feeling great. A few days before this appointment, their GI started her on an acid-reducing med to see if this helps her stomach complaints. I was relieved because I was honestly afraid he would want to do the endoscopy and colonoscopy now instead of waiting for the summer. Getting to her part of the visit with the pulmonologist...he threw a wrench in things. They do a PFT (pulmonary function test) each visit. This time, though her test was normal...the result she had after they administered the albuterol was so drastically different that he felt he needs to treat it. (Mind you, he is cautious with everything and is definitely not a doctor that "jumps" into anything). So he came back and discussed her results. He talked about asthma A LOT and then said that asthma can co-exist with the maybe CF and can make things more difficult. He said he wants to do a bronchoscopy when her GI does his procedures. He said that if he finds anything, it could also be a "game changer for both of them." Addison caught on that we were talking about something more than just an appointment and asked when he left the room. I was honest with her because up to that appointment, we hadn't told her about the summer procedures. I figured no need to give her something to worry about right now. She definitely did NOT like the idea of it...we'll be working through that as soon as I have the date. He then started her on one puff of an inhaler twice a day and she goes back in June. Can we add more layers upon layers?

Middle of last week we got the results from the allergist/immunologist. He has environmental allergies (we already knew this), his IgG was borderline low, but not enough that they would consider it a disorder at this time and his vaccine levels are good. What does this mean? In his words he believes the sinus pain/pressure/infections are due to "his CF." Now in my words, you mean the CF that he "does or doesn't have?" Ok...snarkyness over. But yes, basically besides changing his allergy meds he didn't do anything. We did try the second med he recommended, but that is a NO GO! When the first thing they talk about as a potential side effect is moods, and then those moods happen...NO WAY!

So we are heading into the end of the school year, and start of the summer, still feeling pretty crummy overall. Addison is still complaining daily that she doesn't feel well. She's using different words that Jackson does, so I know it's not something she is hearing from him. We're giving what she's on a little bit more time to settle in and hopefully make a difference before I call back. Jackson's still not feeling great either. He doesn't like the new neb med. The mucolytic makes it feel different, but we can see it's definitely thinning things out! We've had to add a "spit cup" to our pile of things he needs when it's time to nebulize.

I appreciate cautious, I truly do. But cautious is hard to explain to kids. Really hard. In the mean time, we are playing and breathing deep because that's what we do.