Wednesday, May 25, 2016

One Less Team Member

I mentioned in a previous post found here that Harper-Lynn was diagnosed with Sleep Onset Association Disorder. I wasn't too sure of this diagnosis, but as time has gone on I believe it is definitely what she has.  

Even though I believe the diagnosis is true, I've decided to not make Harper-Lynn sleep in her own bed if she doesn't want too.  We've been at this two months and she's only slept in her bed all night 7 times!!! I'm tired of the struggle.  

I have also come to the realization there is something she's needing from me when she comes to get in bed with me. won't always be this way!  Eventually she's going to want her own space, but for now she needs me and I'm okay with fact, I love it. I love that she feels secure with me and wants to be close to me.  One day she'll be all about her friends and right now she's all about her mommy.  

With that said, I called her sleep specialist and told her we adore and appreciate her, but we won't be coming back.  I don't think she was too thrilled, but she did say she understood my position with things.  

The sleep specialist also understands what we're going through as far as testing and an upcoming surgery for Harper-Lynn.  At some point over the summer, Harper-Lynn will be having sinus surgery and a scope put down her throat into her lungs to view them. She will also be having genetic testing done to determine if she has cystic fibrosis or another disorder similar to it.  She had CF testing two weeks ago that came back as mild CF/other genetic disorder. This was extremely unexpected.  While I'm still having a hard time with this, it does explain why she's on her 36th antibiotic and not yet 4 years old.  She's had so many upper respiratory, sinus and ear infections since birth.  While it's great knowing there's a reason for all those things, I'm still uncertain about what the future looks like for Harper-Lynn.  I've been wrestling with questions like: Will she miss a lot of school? Will she get behind in school/learning? Will I be able to work a regular job again since I may have to miss a lot of days? Will she eventually be immune to the antibiotics that are meant to help her?. 

My faith is very strong. I've been through way too much to worry like this.  I know God can move mountains and he's moved through my life in so many ways, so many times.  I know God has us on this path for a reason.  I will continue to let Him lead us where we need to be.  His ways are greater than mine.  

If you stumble across this post I hope you'll pray for us.  We have a big road ahead us and I know prayer changes things!