My 3 Little Nurses

Lukas, Haylee and Hannah have learned how to take care of their baby brother.  They are eager to help, each in their own way.  I love that they can be the hands and heart of Jesus in a tangible way to Jaron!

Hannah has the gift of compassion.  Any time Jaron starts to squirm or cry she runs to his side and informs me of the problem.  She even "knows" when his tummy hurts, he needs a diaper change, he's hungry, he's "doing seizures"...  She comforts him by rubbing his head when he cries.  She gives him his praying Precious Moments angel when he's having a seizure.  She shares her beloved blanket when he is sleeping.  And she's always there with a cloth to clean the bubbly drool from his chin.  Her favorite job is carrying the backpack that holds his feeding pump to the car when we go out.  If he is eating, she has to be very careful to stay close to his car seat while we walk out to the car, so that she doesn't pull the tube that is attached to his stomach.

 Hannah playing with the backpack

Lukas knows how to prepare Jaron's feeding tube and he wants to do it every morning.  This requires filling the bag that hangs on an I.V. pole with his formula, priming the formula through the tube, connecting the cassette that regulates the flow into the pump, setting the pump with the correct rate and dose (digital controls), plugging the tube into the extension that attaches to Jaron's belly, unlocking the tube and pressing start.  He's got it down!  When a feeding is done (1 hour, 4 times a day) the pump beeps and all 3 kids fight over who gets to turn it off.  I love all this help.  They could train a nurse at the hospital :)

The feeding tube and pole

Haylee likes to pick out Jaron's clothes and hold him in the chair.  She's also very patient to give him a nebulizer treatment sometimes when I am in a hurry to go somewhere.  This requires holding the blowing mechanism close to his face and plugging a hole so that all the medicine is diffused into the air he is breathing.  This takes about 5 minutes.  She also likes to give him his medicine in his tube, with help.

Haylee holding Jaron in his chair                      

Lukas giving a nebulizer treatment

You know what? Jaron is almost 1 YEAR OLD!  We are DEFINITELY gonna show them!

"Not yet..."

Jaron had his 10 month well-child visit with his new pediatrician.  When I checked-in they gave me a checklist of developmental milestones for a 9-10 month old child.  I have never done one of these for a pediatrician before, apparently they started using them a year ago and will track your child's development through 18 months or so.  Now, had you given me this list with one of my other kids, I would have been tempted to feel pride about my "right on track" child, and confidently checked off each one.  Well, that was... not fun.  I'm not sure what my emotion was...  Sad, frustrated, angry, humbled, annoyed... yes.  It's one of those things.  It's just totally different to be the parent of a special needs child.  I adore Jaron with my whole heart.  I think that I have appreciated him for who he is and not had unfair expectations for him.  I've been amazed that my other kids accept him completely as well.  Lukas just noticed a month ago, that his cousin who is 2 months younger than Jaron, is sitting up and Jaron isn't.  When he asked Abby, my sis-in-law, why Ashley was doing things and Jaron was not, she very sweetly explained that Jaron is special and will not be able to do some of the things that other babies can do.  Lukas fully accepted this explanation and he rather beams at the mention of his little brother being "special!" BUT, to fill out a 3 page questionnaire comparing your special child to a normal child's development is sad.  The answer possibilities were "yes" "sometimes" or "not yet"  And some of the questions were "Can your child..."  Say "mama" "dada", pick up a cheerio with 2 fingers, walk along furniture, drink out of a sippy cup, etc.  I had to mark the "not yet" box on EVERY SINGLE question.  (sigh)  I have taken many things in stride and I will continue, this was just a little set back, for a minute.  Moving on.  "We'll show them, right Jaron?"

RX, DIET, SUPPLEMENTS. He's covered!

Just finished 2 rounds of Augmentin (antibiotics) in the month of January.  First for an ear infection and then for a sinus infection.  Because the fever and cough were getting worse over the weekend, we found a Pediatric Urgent Care in Portland.  It's the only urgent care that always has a pediatrician available.  So we didn't have to take him to the ER!!! Huge relief!  We saw Dr. Bell, retired after 38 years as a pediatrician and now he works part time for "fun".  Now that's a good doctor!  My sis came along and we asked him lots of questions, learned new things, and I even asked him for a pediatrician recommendation.  I have been feeling like I need a fresh start.  I didn't have any choice when Jaron was born.  My state insurance limited who I could take him to so the decision was made for me.  The neurologist we have seen since the first seizure, refuses to work with the local dietician on the ketogenic diet which the neuro said we needed to try, so I already have to start with a new neurologist.  And she talked to my pediatrician, who was going to help us begin the diet, and convinced him to back out on us as well.  So, I've decided to go to the doctor at Metropolitan Peds who Dr. Bell spoke so highly of.  And we finally have a referral in at OHSU Neurology, so we'll see...

We have SLOWLY begun the ketogenic diet as well.  We have the formula and the glucose/ketone testing meters that we needed.  We are doing it with our Naturopath and a dietician who has developed the safest protocol for managing the diet.  Her protocol/therapeutic order: Lab work to correct any deficiencies ie. lipid or carnitine.  Transition to diet at home gradually depending on how the child tolerates it. Test blood using Precision Xtra glucometer and manage levels from home (blood sugar 60-75 and ketones 4-7).  I love that we don't have to go to the hospital and expose an otherwise "healthy" baby to hospital germs.  I fully trust our dietician's research and 14+ years of experience strictly using this diet.  We started by adding 1 teaspoon of the KetoCal formula twice a day to his regular feedings (gut prep).  Every 2 to 4 days we will add a teaspoon until he is up to an ounce.  Then we will start taking an ounce of regular formula out and so on.  It will probably take 2 months to be fully on the diet.  In the hospital setting he would have been completely switched over within 3 days and then sent home.  If I know my boy, then I KNOW that transition would not go over well with him!  Big changes never do.  Actually little changes seem to throw him...

When we were first introduced to Carrie, the dietician, she gave me a list of supplements to start him on to address his elevated liver enzymes, low tone and seizures.  We began giving Jaron Milk Thistle for his liver, Omega 3/DHA fish oil, Carnitine/CoQ10 for tone and seizures, and rubbing on Extra Virgin Coconut Oil for his eczema.  I already had him on Probiotics for digestion and the Naturopath added Turmeric for upper respiratory congestion and liver.  Hopefully all these things over the long run will bolster his immune system and they are just great antioxidants.