I drove ALL day Tuesday. I slept very little last night! There is this blue light on the ceiling that has lit up our entire room!! I said I had my own stars in my room! But nonetheless, today was clinic day!
How can one be in a bad mood when the inside of the hospital here looks like this??
Dr. M and his entire staff is awesome! Too bad we won’t be here next week. Next week Dr. M will be Jack Hanna the zookeeper and all the rest of the staff are dressing up as animals! So they will all be Jack Hanna’s animals! At least we got to hear about it! But really, even the guy that registers us at the front desk is always super duper nice. Very personable! And Very Very Attentive!! There’s no waiting here. Almost immediately, you are called to the back.
The nurse then takes weight, height, blood pressure, etc. and she is super chatty as well! She then takes you to your room for the day. And from that point on, there is always someone in your room! First is always neurology! That’s Dr. M and his wonderful assistant Rachel. Dr. M is 74 or 75 and is the world’s expert in Duchenne Muscular Dystrophy. And we love Rachel! She is super super smart. She is great at communicating with us each visit and she is who we email in between visits. They were very assertive when it came to Chloe’s headaches. Someone who understands what effects a migraine can have on a kid with muscular dystrophy. They are starting Chloe on some different meds for headaches. We are to check back in a month with them and update. At that point, if it hasn’t worked, then they will change a medicine. In three months if we are still struggling, then they will make her an appt for next time we come with a team of doctors here that work with patients who struggle with difficult headaches. So…we have a plan! Thank goodness. That will help anyone’s outlook when you know the plan is and what to expect. They also indeed verified that what was on her MRI is not from muscular dystrophy! Her MRI will be repeated in December! And then I guess we will go from there!
As soon as one person leaves, another person comes in. And it is that way for 3 to 4 hours!! You are never alone in your room. They accomplish so much here. It always amazes me. Chloe’s strength is still good. Her hips and shoulders are weaker than everything else. But we’ve always known that. But as far as strength goes, initially she has a lot of strength. But then as you expect her to keep repeating the same motion, the strength goes away quickly. This is very common in manifesting carriers. Fatigue, pain, and heart issues seem to be at the top of the list of symptoms for manifesting carriers. Then fatigue leads to weakness! We have learned that they see other manifesting carriers here as well! So it’s nice to know you’re not the only one!!
One bummer today and that is it looks like Chloe is going to have to do ANOTHER sleep study! Ugh!!!! The pulmonologist believes she needs a bi pap machine instead of a C pap machine!! So he is going to talk to our dr in Madison about this. We may have to return here to complete a sleep study. But hopefully, he can work details out with our drs at home. Her sleeping issues could be a trigger for those headaches as well! So we need to get it under control. Right now she is arousing 10 times an hour while she sleeps with what they call respiratory effort arousals. So I’m thinking if I woke up 10 times an hour I probably would be tired all the time too!
The cardiologist is also upping her heart medicine and will repeat her cardiac MRI next time we come!
Let’s see she also saw three different therapists and had various evaluations today on top of three specialty doctors! One of which we saw twice! Once before some testing and once after the testing!
We did have some time this afternoon late to have some time outside in the park here at the Ronald McDonald House!
At least if you have to spend time at Nationwide Children’s Hospital, there is a wonderful Ronald McDonald House to enjoyt! We also went to the play room. And while Krisann played, Chloe and I worked on some craft projects to leave here for the house! Chloe can’t go on mission trips, but no worries, she does mission projects every time she comes here! This time she is leaving Create a Character bags that have some play dough along with googly eyes and pipe cleaners. She is also leaving boxes of lego patterns cards with a few legos in each box. So the kids can use the legos and try to recreate the patterns! And lastly, she made the workers’ desks here a sticky note holder! I can’t wait for her to give them to the office in the morning.
This girl has such a heart for others! And I think it is absolutely wonderful that a place that has blessed us so much over the past two years is a place where she can leave a touch of her own blessings!
Pray for her as medicine changes are very difficult for her! So to be making several medicine changes is going to be hard!
We are very, very tired. A long day of driving yesterday and a long day of doctors appts today. But the trip has been smooth so far! It has not been stressful at all! We are supposed to have storms here tonight. But I don’t know if we will even hear them in this place! We are on the bottom floor! So I’m thinking it could rain and we wouldn’t know! But if it thunders very loud…we might hear that??!!
I have two girls that are ready for the lights to be turned off! Thanks for praying for us today!
