Typical...

...not something we hear very often with Ethan...but this one has a bit of a negative side to it.  He is displaying typical withholding symptoms.  That is what his GI doctor had to say yesterday.  He figures Ethan had a negative experience with stooling and now he tries to withhold, but by withholding it makes the gas worse and the stools more explosive, which tells him that he needs to continue to withhold and makes it worse...and the cycle continues.
His ENT appointment wasn't very successful either.  He threw up when they went to test his hearing and then did not participate in the test.  His ears are okay and the doctor wants to wait for Ethan's other issues to be addressed before thinking about making any changes to Ethan's care.  There is a surgery available for his drooling but it could cause dental issues - so we need to see what his adult teeth are going to do or if time will correct it.  He suggested we might want to do another swallow study, but knows that now is not the best time because we need to keep his lungs safe. 

Meanwhile besides the withholding, he is doing pretty well.  He is in respite for a couple days now and we are awaiting news from the orthopedic surgeon.  The second opinion has yet to be transcribed...and our doctor doesn't want to proceed until he gets this report.  So again, we wait!

My mom visited recently and took a couple pictures that I thought I would share.

If you look closely you can see Lorelei's right eye infection.  But you can definitely see the maternal resemblance.  :)

And here is some of that maternal attitude.  :)  Okay so Ethan's not showing attitude, just some innocent finger chewing.

Okay so...

...about a bottle and a half of Tylenol, a bottle and a half of Advil, a bottle and a half of antibiotics and almost a bottle of eye drops and it seems Lorelei is mostly better.  She stopped having fevers on Tuesday.  We're just finishing off her antibiotics right now.  We started to treat the other eye because it was looking a bit red and I think we avoided a full blown infection in that eye.

Ethan came home on Wednesday morning a bit congested but otherwise is doing well.  He's very chatty which is lovely to hear!  :)  The downside is that he is still having a lot of tummy troubles.  Each morning he screams in pain and tenses up when we start the feed, produces some gas and then has a bowel movement.  I do not think he is still constipated and have started to inquire with the dietician if it could be his feed that he isn't tolerating.  On August 31st we started him on a reduced calorie (from 1.5 to 1.45 calories/ml) diet which had us blend two different feeds together.  To test this theory we are pulling out the additional feed and only giving him the original one.  I'm not sure if we'll see a change but at least it will rule out the feeds if he continues to have troubles.

In a couple weeks we will meet Ethan's 10th specialist (not counting his pediatrician, dentist, the periodontist he saw, the dental pathologist he saw, the dermatologist he saw nor the second opinion) for his Endocrinology appointment.  And this week we got a call that he will meet specialist #11 an allergist (who we're seeing for her immunology specialty) early next month.  Next week he goes for his hearing test and to see ENT - good timing given his recent bouts of ear infections; his GI doctor  - hopefully we'll get some answers about his tummy troubles; and he will be poked to test his blood gases.  Never a dull moment...

Day 5 and Still Going

It is hard to believe that Lorelei (who we refer to as the healthy child) is still sick from whatever it is she picked up.  She has had fevers non-stop and has vomited several times.  We brought her back to the doctor today (yes, there is a bit too much knowledge that rattles around in your mind when you already have a child who is well known in the medical system), and they upped her antibiotic dose.  Her eye still looks horrid and she switches between being stuffed up to a runny nose.

Thankfully, Ethan was able to stay in therapy a couple days longer.  Hopefully that will buy us enough time for her to get over the worst of it and not be contagious anymore.  I'd really like to see the end of this tunnel soon!

Besides the company we had and the great food, my things to be thankful for this weekend are:
1) Ethan was able to stay in therapy longer and hopefully avoid catching this;
2) That Lorelei isn't any worse off than just battling a really bad viral gone bacterial infection.

MOMMEEEEEEE!

"What?!?..."

"I threw up!"

"Hang on, I'm coming."  Certainly not the 5 AM wake up call I like to get.  Okay, so come to think of it any 5 AM wake up call falls into that category, but not what I wanted to deal with so early in the morning. 

I guess I should rewind a bit.  Lorelei has had a fever since Thursday evening.  She vomited on Friday (my call at work was: "Call my mommy and tell her I just threw up and feel better now." - it didn't last long because her Tylenol wore off), and despite lots of Tylenol and Advil she kept getting fevers up to just over 40 degrees.  So off to the doctor today, she has a throat infection and an eye infection.  More antibiotics.  The doctor figures she'll be over the worst of it by the time we pick up Ethan on Monday morning.

He is doing better I've been told but has been sick each morning after his first feed.

Hopefully both kids are better soon!

Seriously?!

I got a call at work today...would you believe that Ethan is back on antibiotics for an ear infection?  We suspect it might be the same infection he had the last time he was in therapy but I don't understand why it gives him more trouble when he goes there.  He started vomiting this morning and is now on antibiotics.  Just what his GI track needed... 

On a good note, he is all systems go!  :)  I'm impressed how quickly PEG works!  I have it on good authority he is in good company when it comes to PEG use.  ;)  Hopefully the antibiotics don't mess everything up again.  He sees his GI doctor on the 18th...and I guess it is a good thing he sees the ENT on the 17th, maybe he can shed some light on Ethan's recent issues with ear infections.

Another Day, Another Med

Well to combat Ethan's issue with bowel movements, we've added Benefibre a couple times a day to his feed for about a week and 1/2.  After 48 hours without a movement, they pulled out the big guns.  He had his first dose of PEG light today with great success.  I'm just hoping we're not going to have to give him this med long term.  For those who don't know, it is a laxative that is taken orally.  The goal is that it works from the inside out.  Once he gets regular again we'll likely try to drop this med again.