Tiny Salutations

Tiny Salutations

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Thursday, May 7, 2015

April's Big Moments Part 1

I have gotten a bit behind here on the blog, or maybe I have gotten ahead in life, I don't know.  I have not had the chance to honor some big moments that happened in April.  The first being that our little one turned three!  Okay, well I put up a blog about how to make a Cat in the Hat birthday party, but this one will be more of a photo blog of his third birthday at home and how we celebrated. 

This is how a 3 year old looks on his birthday- a blur of excitement
We've got a lot of birthday traditions around here, because I am a tradition-lover.  Every year for Layne's birthday we read Dr. Seuss' Happy Birthday to You!, which we started in his first 24 hours (technically the second day of his life, but, hey, you can only do so much when you are having an unexpected emergency cesarean months early).  Every year each of us goes to Mallard's, which is an ice cream shop in Bellingham.  They make their ice cream from scratch, have all kinds of kooky flavors (like black pepper, jalapeno, white Russian, and all kinds of others, along with delicious less-out-of-the-box ones), and have dairy-free varieties.  We each go to the bookstore to pick a book.  This year we started to also make a small animal "adoption" to a environmental non-profit.  This year Layne's was a penguin, which he was quite thrilled with and each time he sees the certificate he says he helped a penguin.

Dad reading Happy Birthday To You! on Layne's second day

A photo of that adorable boy who may or may not have been able to hear us reading to him on that day
Before I get to the photos, I'd like to give a health update.  We are finally getting some answers.  We went over the results of Layne's sleep study with the doctor.  Layne does not have sleep apnea!  He had some central apneas (controlled by the brain), but within normal limits.  It was kind of funny, because the doctor was saying "they rushed this to me to look at, but I can't remember why since he doesn't have sleep apnea".  It was because my sleep apnea was so bad and they were worried about me.  They said it was pretty serious, and I stop breathing for a really long time.  Well tell that to my doctors and my insurance and the whole nightmare of getting through all of the red tape.  I am hoping that I can get that solved in the following few months and will be getting a heavy duty BiPAP.  Anyways, back to Layne.  They said that he did have a high respiratory rate the entire study, which he always has, which indicates lung disease.  He will be escalated to a Children's pulmonologist to get a better grip on his breathing.  It is clear that his issues all keep pointing back to his lungs as the underlying cause.  The difficulty he has breathing at night seems to be a general breathing issue with his lungs rather than sleep apnea. This appears to be bigger than asthma, but more of a lung disease.  This seems pretty believable since he wasn't done making his lungs when he was born and was intubated for several weeks. We know he has damage to his lungs since he was intubated so long (much longer than the usual safe/no damage point), and some days we could see blood coming up his ventilation tube.  Yeah.  Poor little dude.

His difficulty sleeping in the car seat seems to have been related to position.  His physical therapist added some pads to his car seat to force his lower back out more.  And it worked! No more breathing issues in the car seat so far- fingers crossed.  He is too weak to hold his head up properly in his sleep like a child his age normally should, so when his head is only slightly forward it makes saliva pool up a little more, which he then aspirates (breathes into his lungs instead of down into his stomach), which makes him stop breathing.  So now that he is positioned better, I am really hoping he will continue to breathe well in the car.  

Still no answers getting me walking.  The kidney- and lupus-related doctors are saying it is a neurology issue and the neurology-related doctors are saying it is a kidney issue.  No one can agree and although no one is trying to make things worse, nothing is really happening to make things better either.  I know I have a few doctors who do honestly want me to feel better, but I'm kind of in a holding pattern right now.  I personally think it is obvious that right now my kidneys are doing just fine.  I don't know how my phosphorus dropped, but right now my kidneys seem fine.  All of my autoimmune diseases are pretty flared up though.  Still in the wheelchair...

OKAY.  Photos.





This has become his favorite can't-leave-the-house-without-it toy




Think that's a big enough bite?


So full of faces


His bookstore picks