The Fun Stuff:
Casey is wrapping up her Cookie Sales. She is the top seller in her troop. She kind of has an unfair advantage though- there are a lot of people in her care circle that were all more than happy to buy cookies from Casey. We are down to our last 5 boxes! When she is all done she will have sold 230. That’s pretty impressive. There are some kids that have goals of 1000+. That is way more than I think we could handle. Casey had fun selling, but I am pretty glad we are wrapping things up.
Casey has been practicing for her upcoming recital. She got her recital dress yesterday. It looks like a Cinderella gown. She is going to be so beautiful- as always.
Casey has been working hard getting ready for Valentine’s Day. She made a fancy box with her teacher and has been making crafts for Daddy and me as well as little Valentines for her friends in dance & Girl Scouts. She loves any excuse to do arts and crafts.
It has been pretty warm over the past few weeks. She has been in the pool twice and out on her swing every chance she gets.
Since Casey is in 3rd grade now- WOW! She has to take the state test this year. It is of course modified for her, and instead of a timed test one afternoon she will work with her teacher to take it over the next few weeks. It’s not really pass/fail but more of a complete that she has to do. Her teacher assures me that Casey knows the content, it is all about finding days when Casey will respond to let her know she knows the content. I have to be nearby to come in and suction Casey as needed (or a nurse does), but there are some funny rules about us not knowing what is on the test. So don’t ask, I won’t know and even if I did I could not tell you 🙂
The Medical Updates:
It feels like the last 6 months are so are just a blur. Casey has been growing so much and everything keeps changing. As soon as I think I have one thing figured out she throws something else my way. I am never bored though, I can say that without a shadow of doubt. I can say for certain that I learn something new everyday too.
I mentioned in the last post that Casey’s ENT was a little concerned with her cholesteotoma being more active than it has been in years past. He wanted us to bring her in if we saw any drainage or signs of infection at all. Of course, he takes the following week off and Casey gets a nasty infection. We saw one of his partners and got Casey all cleaned out and back on her medicated ear drops. The doctor that we saw suggested/ordered a CT scan of Casey’s head. A CT scan generally is not a huge deal. However, for Casey it is. She can not be positioned in a way that radiologist need her for this type of imaging. Trying to move her around getting her as close to this position as possible gets her really upset. The more upset, the more secretions, the more suction, and the higher risk for aspiration (that often leads to additional respiratory issues). We have to stay with her at all times to manage her airway as it is very complex and not something that radiologists are generally prepared for. The next option they offer is to bring in anesthesia and sedate Casey for these types of treatments. That usually goes even worse- the details on all the ways that goes bad are way too much to type up for this post. So even though in theory a CT scan is minor- for Casey it is still a huge deal.
We had to get labs drawn for her GI bleed recently. We had to go the 3 labs on 2 different days. 8 needle sticks total- 5 on the final day. There were 4 different techs that attempted to draw blood. Due to Casey’s physical changes the more she grows the harder and harder getting access to her veins has become. We lost the ability to get peripheral IVs placed over a year ago. Now any IV needs to be placed using an ultra sound (by the PICC team in the hospital). It is looking like her blood draws are going in that direction now too.
We are still dealing with lots of respiratory issues over the past few months as well. She’s good one day then awful the next. We are needing a lot more oxygen and respiratory aids than before. Her left lung had a partial collapse around the new year. We saw pulmonary yesterday and the collapse is either still there or back.
It’s really hard to know with Casey what issues can be addressed, treated and/or fixed and what issues are part of our new normal. We saw her palliative doctor last week and brought all of this (and more) to his attention. We don’t have a date yet, but sometime in the near future we will get palliative, pulmonary, ENT, GI, neuro and Casey’s pediatrician together for what is called a care conference. Tim and/or I will also be there and we will take a team approach on “what’s next?”. I wish it were easier. When we try to work on one thing something else usually gets worse. No matter what she has going on, each little thing triggers break through seizures (heck- even bad weather can trigger seizures). She is showing more signs of puberty now too- which is just one more complication to factor.
We have known since very early on with Casey that some areas will improve. She will have more and more personality, her cognition and social interactions all improve every day. However, the big system issues (lungs, digestive, neuro, muscle/skeleton, etc) will continue to get worse. Some years they only degrade a little, but some years she takes bigger hits and the changes are hard on everyone- especially her. I hope that we can come up with some non-invasive ways to help her at the care conference. I worry though that there are not a lot of options and that some of these “issues” are not actually issues, but just more Caseyisms.
We hope everyone is doing well. Thanks for everyone’s continued well wishes, prayers and support. We can’t say thanks enough for the amazing support system we have. We are very fortunate. Since we do not have a date for the care conference, I am not sure when/if we will have a lot to update on her medical issues in the near future. We will have pictures and updates for the upcoming recital, Valentine’s GS meeting, and more fun stuff to post soon.