November 5th Milwaukee Appointments

Our day started bright and early at 3:00am when my alarm decided to tell us it was time to get up and get ready.  Since we had a 4 hour drive and Caitlyn's first appointment was at 8:00am we were out the door and on the road by 4:00am.  Thankfully, Caitlyn slept the entire way down. 

We were in Milwaukee by 7:00am...an hour early!  We stopped for gas and to feed Caitlyn a light breakfast and headed to one of the off-campus clinics to see Dr. Thometz, Caitlyn's orthopedists.  One the way to this clinic, which I had only been to one other time, I realized I was going to the wrong one, this was just another time our GPS saved us, it also helped that we were in Milwaukee so early. The xray that was done at the clinic looked perfect and Dr. Thometz said he wanted an MRI of her hip in 3 weeks and if everything came back looking good then we would be able to remove the splint and only put it on her for bed and naptime!

It was off to the main Children's Hospital campus to meet with Dr. Kelly, Caitlyn's oncologist.  The appointment didn't really provide us with any information that we didn't already know for Caitlyn's present state.  He did say he would prefer Caitlyn to stay on her chemo for at least another few months and then we would go from there.  We talked about what sort of things to expect as Caitlyn grows and how her lymphatic malformation may change as she gets older.  We discussed whether or not we should hold her back from doing things that babies, and then toddlers, like to do as they learn to walk and run and wanting to play rougher.  I don't want to be the overprotecting mother who wraps her child in bubble wrap before sending her out to play, however I also don't want to be so overprotective where she won't ever get to do anything.  I think kids need to fall down, just to learn how to get back up but Caitlyn is so different than any other child I just don't know how to balance this out yet.  Any advice?

The first thing I learned when studying KTS 101 was KTS patients are prone to getting infections, even life threatening, because the skin will breakdown and become vulnerable to bacteria.  This could happen with anybody, however KTS patients are much more susceptible to these sorts of infections.  Which is why, ever since she was a newborn and her diaper area became so red and her skin was cracking, I blow dry her whole body after every bath and areas that become moist in between baths.  This includes her diaper area and her little bottom, the little creases behind her knees, between her little rolls under her chin, and lastly her armpits.  Up until our travels through cast-ville, Caitlyn's skin has always looked great.  Since I now can't get to all of these places all of the time with the blow dryer her skin has started to get red again, even in places that I never worried about before.  Like on top of her lymphatic malformation, this is happening because the cast rubs the skin while she moves.  So because of the troubles with her skin it was then off to the Dermatology clinic so I could brainstorm with the doctor on how to prevent some of troubles.  The doctor took some cultures of the areas of Caitlyns body that was affect with breakdown.  She then wrote out a couple of prescriptions and told us when the results came back from the lab she would call to let us know which prescription to have filled and start using.

Our day still wasn't over.  It was 2:30pm Caitlyn still hadn't eaten lunch or taken a nap and we had one more appointment to get to.  She was holding it together pretty well with only a couple little episodes of crying which only lasted until I picked her up and held her.  We stopped and fed Caitlyn a quick lunch and headed on down to Occupational Therapy.  Caitlyn's splint needed adjusting however the ladies that make the splints in occupational therapy said it would just be easier to create a whole new one for Caitlyn instead of trying to fix the old one.  Needless to say, I was very happy about this decision!  After two months in this splint, and with episodes of diarrhea Caitlyn definitely needed a new splint.  It took about an hour from start to finish and this cast was much better fitting and so much smoother around all of the edges.  I was very happy with the outcome of the new cast.  Now, I will use the old one to put on her and give her a somewhat normal bath again!

Appointments were finally done, we left Milwaukee were home by 9:00pm, and Caitlyn was in bed by 10:30pm.  A successful day; long, but successful.