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| Too close to a life-like dino. Sooo cool! |
Hello Again. I've been working on this post for days! It has changed course multiple times and I can barely tell if I got it all out by now. But, for some of you who are reading this, just seeing something new here is a welcome sight. If you are new to Meaghan Me Dizzy, yay!! So happy to have you here.
You have all been on my mind. I've just been stuck in a rut and I didn't know what to say. I was feeling very bad for a long time. I was sure that Meaghan was getting sick again. Turns out, she's better than she's been in 2 years. Our road is still anything but easy but we are celebrating more around home for a change.
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| Singing along to the pulsing of the vest |
Back in February, per the advice of Meaghan's psychologist, I signed Meaghan and Jonathan up for a Lil' Big Wheelers Class. The therapist didn't know about the Big Wheel class, she told me to look for an activity that was outside my comfort zone. She said I had to get out of my bubble. She was very kind about the request. She gave me credit for keeping Meaghan healthy and getting her strong again. It was a tough pill for me. I promised that I would consider it. I couldn't imagine there being a suitable activity in February so I kinda wanted to just move on and forget about it. The very next morning, I couldn't believe it, the VERY next morning, there was a email from HoCo R&P practically begging people to register for a class that started that day. It was just what "we" needed. One hour a week of time to make friends and exercise at an indoor gym on a small scale. The class has been a big hit. Meaghan, Jonathan and I have all made new friends. I was extremely worried about Meaghan catching a cold or worse. I thought she had by the end of the first week. She complained of a sore throat but then seemed better right away too.For 4 weeks I kept a close eye on Meaghan and her symptoms. She sneezed and sniffled but I kept hearing that she was ok. I didn't believe it, I couldn't believe it. I was living in a nightmare. I was having flashbacks of February 2012 and worried about when, not if, we would be back in a hospital getting more bad news. Friday, 3/7, I had Meaghan back at the CF Center at Hopkins. My head was throbbing, I had a huge lump in my throat and a tightness in my chest that was suffocating me BUT the whole time Meaghan was in high spirits and seemed not to notice my struggle. I waited with Jonathan while Meaghan went to the PFT lab (pulmonary function testing). Waiting to hear from the doctor about what Meaghan's numbers meant was excruciating. I could not believe my ears when she told me that Meaghan's numbers were up from her last visit. We talked about Meaghan's sneezing, sniffling and bad attitude. Then in the cutest doctor way, Dr. P sat back in her chair and said she had a theory and that I should believe Meaghan is healthy. While we didn't hit the pseudomonas "hard" this time we did try a new treatment for it. Dr. P said she feels that the sneezing and sniffling are Meaghan's body's way of ridding the dead bacteria trapped in mucus that is thinner now because of the success of the treatment. So, as an added precaution, she prescribed an oral medication that she called, "the 2 in the 1-2 punch pseudomonas sometimes needs." Meaghan has been on this medication before but she was always "sick" when we tried it. Starting it again now seems not only reasonable but necessary. For the first time in over 2 years, I took a deep breath and felt a wave of hope spread through my body. Still, it's a hard thing to handle, I don't think I can trust it.
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| First baby tooth fell out! |
Check back next week. Hold me accountable to my new SMART goal of weekly updates.
Hugs and God Bless
