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Friday, October 4, 2013

Parker Is Keeping Us On Our Toes

It's been awhile since I've posted a Parker update.  So I'll do my best to catch everyone up.  I want to start by posting this video because it was the highlight of our week!

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Isn't he amazing?!?!  I'm so proud of him.  Pulling up to a stand is something Parker has worked hard on for awhile now and he's figured it out.  Sure, it may not be the most conventional way but nothing he does ever seems to be.

In other news, Parker's surgery at MAYO had to be rescheduled since he's been fighting some respiratory problems for a couple of months now.  While we really want to get this surgery out of the way, we also want to make sure he's at his best for the surgery.  So...the new surgery date is October 28th.  The hope is to be back home in time for Halloween because that's always a fun time for the kids.

Many tests were done in the last couple of weeks to help figure out what's going on with Parker. We found out he had an ear infection (the first one since his ear tubes were removed) so he was started on a new antibiotic for that.  He also had a chest x-ray which came back good except that it showed an enlarged heart.  He had a heart echo done last week and luckily it was normal.  Nothing concerning there.  Whew!

A trach aspirate was done (this is where they suction Parker's trach and send the sample to the lab to see if there's any bacteria present).  It showed the same bug that it always does but it's probably overgrowing and getting out of control - which it does sometimes.  So he was started on new antibiotics for that too.

I also have been working hard with the insurance company, Doctor's office and Medical supply company to get approved for more suction catheters each month.  Right now we have to reuse suction catheters and my theory is that this is part of the problem.  How are we supposed to get rid of the annoying bug that is causing these trach infections if we continue to reuse catheters and continuously reintroduce the bacteria that we just suctioned out?  I'm hopeful that if we get to use a different suction catheter each time that it will help.  In the meantime, some wonderful trach Mommies that I've met on Facebook have offered to send me some suction catheters they no longer need.  I love my on-line groups!!!

Additionally, blood work showed Parker is allergic to cow's milk.  This wasn't too surprising since Parker couldn't tolerate breast milk or other formulas as a baby.  That's why he was started on Neocate formula and was on it for a couple of years.  A few months ago, the GI Doctor and Dietitian thought it was time to challenge his system a bit and he was put on Peptamen Jr.   I loved the Peptamen Jr. because it helped with Parker's poo issues a lot (you may remember from previous posts that I was having to deal with blowouts daily).  Well, once he got used to the Peptamen Jr. the poo problems subsided a lot and I was enjoying not spending a great part of my week cleaning up messes. Well, the increased respiratory symptoms started about the time he was transitioned to the Peptamen and with the confirmation of cow's milk allergy we decided we needed to investigate further.

Earlier this week, we took him to an allergist at Children's in Omaha.  They did a scratch test using the Peptamen Jr. and it was confirmed he is sensitive (and likely allergic) to it.  Bummer.  So, now we are doing a trial on a different elemental formula called Elecare.   The Dietitian and allergist said the next step would be to transition him to a soy based formula.  Well, I'm not terribly excited about Parker being on the Elecare or soy-based formula for the rest of his life so I'm looking into starting a blended diet for him.  This is when you take "real" foods and pulverize them in a blender so much that you can then administer them by the feeding tube.  They have to be blended up really, really well so they don't clog the tube but it's nice because you can monitor exactly what your child gets, know they're getting excellent nutrition, and it's more "normal" for their systems - not so full of chemicals and ingredients you can't pronounce.

This is a big undertaking, a bit overwhelming and expensive but I believe it may be what is best for Parker. So...I'm going to give it my best and see what happens!  Hopefully my little guy will start gaining weight again too (it's been over 6 months since he's gained any weight).

In addition to all the  Doctor appointments we've been to lately (which has been A LOT), we've also increased Parker's therapy.  We now see physical therapy, occupational therapy and speech therapy once weekly on an outpatient basis.  This is in addition to the therapy providers from the school system.  Some weeks I feel like I spend more time at appointments than I do at home.  I guess I should be grateful because compared to when Parker was a baby we don't have nearly as many appointments.  However, it still seems like a lot.  No wonder Parker is always sick - he gets exposed to all sorts of new germs all the time.

I'm also working on changing Parker's pediatrician.  Our current pediatrician is very nice and I appreciate that she doesn't rush us when we're there but many mistakes have been made recently and I think I've lost the trust I had in her.  I will have to second guess all of her recommendations from here on out and that just really doesn't work for me.  Well, you'd think changing physicians is fairly straight forward but not when you have a medically complex child.  Other pediatricians don't exactly jump on the chance of getting involved and I've been turned down by one of the largest pediatric practices in town.  Thankfully, Parker's Pulmonologist has offered to personally call and refer Parker to some of the pediatricians that she knows in Lincoln.  I'm not exactly sure when this will all take place but I'm hoping soon.   Prayers in this area would be appreciated!!

Other than that, Parker is still a happy, determined little guy who likes to cuddle, sing songs, wrestle with his sister, swing, play ball, and throw all of his toys as far as he can.  His naughty side is starting to peak through lately as well.  He likes to pull his sisters hair and does test limits with Paul and I.  It's hard to get upset with him for these things because we are so happy he is hitting these developmental milestones.  However, we are trying to teach him the sign for "hurt" for when he pulls hair or bites and we are working at being consistent with our responses so he knows what is acceptable behavior and what isn't.  

Well that covers the updates from the past few weeks.  Thanks for reading and staying up to date on this journey of ours.  I'll try to post some Alexa updates really soon.

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