Where do I even begin?? I’ll start by saying that I’m so glad June is over! It was a long and tiring month. We spent most of the month worrying about Leah’s neck. After my last post, things didn’t seem to be getting any better, and for a while seemed like she was getting worse. She wasn’t turning at all to the left and it was obvious that she was in a great deal of pain. There were several nights when she wasn’t sleeping at all or only slept on me, so I didn’t get much sleep either. We finally got her back into see Dr. Marker and he was puzzled too. Not what we wanted to hear! And scheduled an MRI to see what exactly is going on in there. One of the concerns was that her chairi malformation, which is at the base of her brain, was putting pressure on her nerves and causing the pain. Of course we always worry about her shunt, and what if something else was wrong? AAAAHHHHH! A regular visit to our cranial-sacral therapist didn’t even seem to help much, so by this time I was pretty worried.
We finally had her MRI scheduled for July 2. Wouldn’t you know it, the day before she woke up with a fever of 103 and was sick all day, even taking 2 naps. We just can’t catch a break! She woke up that morning feeling much better and we were able to go on with the scans. We’ve done this drill before… 4 other times where I’ve held her while she goes to sleep. But this was worse than all the others. Maybe it was that I was just so tired or I was worried because I didn’t know what the outcome would be, but whatever it was, I had a much harder time than in the past. I have to say, though, that she was a total trooper and charmed the pants off everyone there, even as she was drifting off to sleep. I went to lay her down on the machine and she started crying, so I sat in the chair and held her while she drifted off. One of the nurses blew bubbles at her and they loved that she referred to herself by her name “Leah” and got a kick of out of her teeny tiny painted toenails. An hour and a half later, we got to go back into her room where she was still sleeping. It was about another 15 minutes before she fully woke up and was in a pretty good mood. She was very excited to get juice, a rare treat, and have some snuggles with us.
Then off we headed to our neurosurgeon’s office… the dreaded, dreaded meeting to see what awful terrible things are happening inside her neck. It turned out to be nothing. Absolutely freaking nothing! A small part of me was almost a little disappointed that it was nothing, and I felt kind of silly for making such a big deal about it. Our neuro was so great, though, and he reassured us that we did the right thing by getting her in. There could be a few things happening. First, she could have actually pulled a muscle in her neck, and it just needed a few weeks to start feeling better. Second, sometimes the shunt tubing gets stuck or develops adhesions, which is slightly uncomfortable and not usually anything serious. He typically sees that in kids who go through a big growth spurt (think about a 13-year old)… like growing several inches in a short period of time. Either way, our remedy is to do some Tylenol and do massage along her neck to loosen things up. It seems to be working because she is getting better but not back to full rotation yet. We’re almost there!
After everything we’d just gone through, all the worrying and all the sleepless nights, I just shut down when we got home. I was so done. It’s amazing how quickly it hit me and I can’t remember the last time I felt so tired. I am so thankful my parents had just got into town and could help take over for a little bit. We ended up having a beautiful holiday weekend, celebrated the 4th and got an extra day to relax. I have lots more to share about our fun weekend and everything that's happened in the last couple weeks. More to come!
We finally had her MRI scheduled for July 2. Wouldn’t you know it, the day before she woke up with a fever of 103 and was sick all day, even taking 2 naps. We just can’t catch a break! She woke up that morning feeling much better and we were able to go on with the scans. We’ve done this drill before… 4 other times where I’ve held her while she goes to sleep. But this was worse than all the others. Maybe it was that I was just so tired or I was worried because I didn’t know what the outcome would be, but whatever it was, I had a much harder time than in the past. I have to say, though, that she was a total trooper and charmed the pants off everyone there, even as she was drifting off to sleep. I went to lay her down on the machine and she started crying, so I sat in the chair and held her while she drifted off. One of the nurses blew bubbles at her and they loved that she referred to herself by her name “Leah” and got a kick of out of her teeny tiny painted toenails. An hour and a half later, we got to go back into her room where she was still sleeping. It was about another 15 minutes before she fully woke up and was in a pretty good mood. She was very excited to get juice, a rare treat, and have some snuggles with us.
Then off we headed to our neurosurgeon’s office… the dreaded, dreaded meeting to see what awful terrible things are happening inside her neck. It turned out to be nothing. Absolutely freaking nothing! A small part of me was almost a little disappointed that it was nothing, and I felt kind of silly for making such a big deal about it. Our neuro was so great, though, and he reassured us that we did the right thing by getting her in. There could be a few things happening. First, she could have actually pulled a muscle in her neck, and it just needed a few weeks to start feeling better. Second, sometimes the shunt tubing gets stuck or develops adhesions, which is slightly uncomfortable and not usually anything serious. He typically sees that in kids who go through a big growth spurt (think about a 13-year old)… like growing several inches in a short period of time. Either way, our remedy is to do some Tylenol and do massage along her neck to loosen things up. It seems to be working because she is getting better but not back to full rotation yet. We’re almost there!
After everything we’d just gone through, all the worrying and all the sleepless nights, I just shut down when we got home. I was so done. It’s amazing how quickly it hit me and I can’t remember the last time I felt so tired. I am so thankful my parents had just got into town and could help take over for a little bit. We ended up having a beautiful holiday weekend, celebrated the 4th and got an extra day to relax. I have lots more to share about our fun weekend and everything that's happened in the last couple weeks. More to come!
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