Thursday, February 4, 2016

Two new diagnoses...

 Just three days old here...
Harper-Lynn has been on antibiotics 30+ times since birth and she's not yet 4.  She's had 25+ ear infections and numerous upper respiratory infections.  Last fall I started hearing and feeling a flapping on the right side of her chest just under her arm.  I took her to see her Allergist who also could feel the flapping, too.  She wasn't sure what it was and ordered testing which came back normal.  She referred Harper-Lynn to a Pediatric Pulmonologist.  

We saw the Pulmonologist for the first time last month. He, too, felt the flapping. Harper-Lynn had just been on antibiotics days before we saw him so he chose not to do a chest x-ray since he said it wouldn't give us the baseline he needed. The doctor decided to treat Harper-Lynn very heavily for Asthma as a starting point.  We saw him last Thursday for a follow-up.  Incredibly his treatment has worked.  The flapping is gone, she's not wheezing and coughing at night anymore. She had a runny nose for about a week in early January, but it didn't turn into an infection.  This is the longest stretch Harpie has been without antibiotics.  I'm so thankful! The Pulmonologist officially diagnosed her with Asthma.  He said we'll continue the treatment we've been doing and maybe add Zyrtec if she has problems with allergies in spring time.  

Later that same day we met with a sleep specialist.  She was so kind and knowledgeable.  Typically children on the spectrum have sleeping issues.  Harper-Lynn does and pretty much has since birth.  I can remember as a newborn she wouldn't take naps at all during the day and be up for hours at a time at night.  It was exhausting!!!!!! 

After talking with the specialist and reviewing her history she diagnosed Harper-Lynn with Sleep Onset Association Disorder (SOAD). Now, I have never heard of this disorder so of course, I wanted more information.  It's her opinion that Harper-Lynn won't sleep in her own bed or sleep without me because she's fully dependent on me.  Some kids have a favorite blanket or doll...Harper-Lynn has ME! I guess it makes sense.  Because she won't sleep in her bed I put her in bed with me to cuddle and fall asleep then put her in her bed about an hour later.  EVERY SINGLE NIGHT she gets up and gets back in bed with me.  

The past few nights have been tough.  I've made Harper-Lynn fall asleep in her own bed.  She hasn't been too happy about it.  My favorite line from her was, "I'm stuck in glue and can't get off the floor." Let's just say there was no glue! ha! She's made it one night without getting into my bed.  Each time I've taken her back to her bed.  

It's going to be a tough road ahead.  I have to think a lot of single moms must go through this, though.  After a long day of doing everything just want to comfort your child and let them fall asleep with no resistance.  I'm buying Harper-Lynn a light up Rainbow Dash next week to sleep with.  I'm sure that will help things a lot! 

So if you're keeping tabs, Harper-Lynn has: Autism Spectrum Disorder, Hypotonia, PICA, Asthma and Sleep Onset Association Disorder. There's also something going on with her right knee and an issue we're working on having to do with light sensitivity.  Never a dull moment around here for sure! We stay busy, but Harper-Lynn is so worth it!!!