Children's Hospital Boston @ Waltham a diagnosis

We finally got in to see the Doctor at Boston Children's Hospital.  We saw Dr Gno.  Things went well.  We went over his history and various other Dr appointments and test results.  Basically it is a
confirmed that is is FPIES.  There is no definitive test for it and really no treatment.  The plan for right now is to continue with Elecare Jr and avoid the foods we know have made him sick and slowly introduce new foods.  They also took a bunch of blood for allergy testing not that we expect any of that to show anything.  The Phlebotomist did an amazing job and only had to stick him once and that has never happened!  We will follow up with the local GI in a few weeks and come back here the end of August.

Also he will be getting Tubes in his ears next week!

Doctors, doctors and ugh....

This week was crazy busy with Doctor's appointments, mostly for Ryder.

Monday was Ryder's 1 year check up and Noah's 7 year check up.
At his seven year check up (on 04/22/13) Noah's stats were as followed: BP: 96/68
Height: 3' 10.61
Weight: 45 lb 9.6 oz

So although he's a bit on the small side he is healthy.  Everyone at school loves him and talk about how well behaved he is and how he is polite and courteous.  He loves his video games.  He is starting to read more and ore and really likes it!

Ryder at 1 year:

*still in size 4 diapers
*still in mostly 12 month clothes with a few 18 month
*started cruising and will occasionally stand on his own
*pulling himself up to standing on everything
*is taking about  24 ounces of Elecare Jr formula from a bottle
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers
*laughs and smiles a lot when he is feeling good

*sleeps 1 5-6 hour stretch each night, still waking up every 2 hours some nights

*still very ticklish!
* 5 teeth!
*weight 19 lb 10.5 oz
*still height 30 inches
*head 18.3 inches

So we have decided the best coarse of action at this point is to see someone at Children's Hospital Boston.  His PCP put in a referral to get the ball rolling.

Tuesday Ryder had an appointment with Allergy for a second opinion.  The doctor and I went over his history and he feels that if it is a food allergy it is a non IG-e mediated reaction (more on that later).  The doctor did order some blood work to rule out the possibility of an auto immune deficiency, and agreed CH-B was the place to go.  After the appointment we went to the lab where they tried 3 separate time to draw blood with no success.  We had to try a different lab Wednesday Morning.

ETA: those tests came back normal

Wednesday Ryder had an appointment with ENT to discuss his recurrent ear infections especially since the last on resulted in a ruptured ear drum.  So long story short Ryder will be getting tubes:(  We came to this decision for multiple reasons.  When Ryder gets an ear infection he doesn't have the usual symptoms, anti biotic wreck havoc on his already  sick digestive tract and if he does get an infect with tubes we can use antibiotic drops directly into the ear instead of oral or IM anti biotic.

The Big Bash!

For Ryry's Birthday we I chose a Dr Seuss theme. 

His amazing shirt made by Nonnie

Cake 1, it was  Hypoallergenic and made just for Ryder!

Cake #2 the real cake for real people:)

MMMM....cake!

After chowing on cake....Coconut oil melts at body temperature apparently...he is covered in greasy melted frosting!

Hanging with Popsie after a bath

Partied too hard!

Happy Birthday Baby Boy!!!

I spent a lot of time on pinterest finding food ideas that were Dr. Seussish:)  So the menu looked a little like this:

Noodle eating Poodles- Homemade Mac & Cheese
One Fish Two Fish- Blue Jello cups with Swedish fish
Hop on Pop (corn)- Smart Food
Cat in the Hat- Strawberry Banana Skewers
Green Eggs- Green Deviled Eggs
Yot in a Pot- Meatballs and Kielbasa in the crock pot
Skipper Zip's Chips- Chips and dip


The cake my sister made was supposed to be hypoallergenic.  It was gluten free, egg free, dairy free, soy free with dairy free frosting made with coconut oil.  Unfortunately, it seems coconut is also a food that triggers Ryder's "episodes".  I feel bad my sister put in so much work making a special cake just for him, researching, price checking and everything and it made him sick anyway:(  Your effort was greatly appreciated even so!

The Saga continues....

Once Ryder was switch to the Elecare formula he seems to be doing much better.  His weight has been closely monitored by his GI, the VNA and his Pediatrician.  His weight goes up and down but nothing to alarming!  Our first follow up since the tube was pulled was today.  When we arrived we realized he had a poopie diaper, when we opened up his diaper there was blood...again:(  His GI decided it was time for the scope:(  So Monday morning Ryry will go under general anesthesia and have a endoscopy and a colonoscopy.

WW- On the mend:)

Back to the GI this afternoon...we had a small weight loss as of Monday...fingers crossed!

Hey Hey Hey Goodbye!!!

The tube was removed today!!!  They will continue to monitor his weight and as long as he keeps gaining the tube stays out!  Wish us luck!

Bow ties in his hair

All smiles

First bubbie without the tube

11 months!!

*still in size 4 diapers
*still in all 12 month clothes 
*started crawling normally as soon as he cam home from the hospital
*pulling himself up to standing on everything
*is taking about  20 ounces of Elecare Jr formula through the tube a day plus a bit more from a bottle
*eats a variety of fruits and veggies, puffs, Cheerios, pasta, graham crackers, Ritz crackers
*laughs and smiles a lot

*sleeps 1 5-6 hour stretch each night, still waking up every 2 hours some nights

*still very ticklish!
* still 4 teeth!
*weight 18 pound 9 ounces
*still height 29 inches
*head 18.3 inches 

We head to the GI tomorrow to hopefully have the tube pulled!!  So far we have seen no more blood in his diapers and he seems to really like the Vanilla formula.  A visiting nurse goes to daycare every week to check his weight and vitals.  His weight has fluctuated a bit since coming home from the hospital but for the most part continues to increase.

Still all smiles!

How we keep the tube out of the way when he is not feeding

Smiles even with the binkie!

If the tube doesn't come out tomorrow they will still pull it and put it on the other side to give his poor skin a break from all the tapes:(

WW- Sick Baby:(

I'm working on a real post I promise!

Second Hospitilization

2/26 We had an appointment with the GI in the morning.  The GI and his NP (nurse practitioner) walked in the exam room took one look at Ryder and looked at the weight loss since being discharged and said we would be readmitted with a feeding tube.  We asked if we could go home and pack a bag.  We went back to the hospital about 11 am.  I left and went to work for a bit.  When I returned they had started an IV and put in the feeding tube.  The C-Diff test came back still positive so we were switched from Flagyl to Vamcomycin...thankfully the meds can be given through his NG

tube!


We spent the next few days slowly increasing the amount of his feeds.

3/1 about 11am the Medical supply company came to show us how to work the feeding pump he would be going home on.  Also is Primary Pediatrician dropped in and we will make an appointment for early next week for a follow up.  About 12 noon we went home!

Defiantly a much less eventful stay but we will see if we make some progress!

9 Months and a sick baby:(

*in size 4 diapers
*now in all 12 month clothes 
 *sitting up on his own very well
*pulling himself up to standing on everything
*was taking about  30 ounces of Enfamil Prosobee formula a day but more on that in a bit
*taking 5-7 ounces every 3-6 hours
*eats a variety of fruits and veggies and puffs and Cheerios
*laughs and smiles a lot

*sleeps 1 5-6 hour stretch each night, still waking up every 2 hours some nights

*still very ticklish!
* still  2 teeth!
*does the cute little army crawl he will get up on all fours and rock back and forth but wont crawl on all fours
*weight 17 pound 14.1 ounces
*height 28 inches
*head 17.8 inches 

Who doesnt love naked baby bum??

Ryder is currently quite sick:(  It started a few weeks ago and has progressively gotten worse:(

• 12/11/12 He was diagnosed with an external ear infection and given antibiotic drops for 10 days
• 12/31/12 He was diagnosed with an internal ear infection and given antibiotics for for 10 days
• 01/05/13 We brought him in for bloody mucus in his diaper, he had a very mild fever but we were  told  it was nothing and call back if there was any more but other wise we would just watch him
• 01/08/13  7:00a  He woke up and his right eye was swollen shut and a bit crusty, his left eye was slightly red.  We brought him to the local urgent care clinic who diagnosed him with conjunctivitis and prescribed and antibiotic ointment for his eye.  He had a slight fever and diaper rash from days of diarrhea.  They suggested we take him to his regular pediatrician with in the next 3 days. 9:00am We took him to see his regular Pediatrician.  She told us it was not conjunctivitis but some sort of virus and prescribed an antibiotic drop for his eyes instead of the ointment just in case.
• 1/14/13 He had bloody mucus in his diaper again but since he had a doctor's appointment first thing in the morning we just saved the diaper for then
• 1/15/13  We took him for his 9 month appointment.  I flat out told the Dr I was not going to sit around and wait and see what happens, she agrees and orders stool samples.  She also switched him to Similac Alimentum, a hypo-allergenic formula, in case of a Soy intolerance too.  He refused to drink it so we switched back to Soy.  Also given a special diaper ointment for suspected yeast infection from the antibiotics.
•  1/18/13 Dropped the stool samples off at the lab.  His poor bottom has sores on it from the diarrhea:(
• 1/20/13 Doctor's office called with results from stool samples.  He was diagnosed with C-diff or Clostridium difficile 

Long story short all the antibiotics he has been on lately have killed all the good bacterial in his digestive system and the bad bacteria took over causing and infection.  The poor little guy has probably had stomach cramps along with his diarrhea.  He was put on another antibiotic to help clear up the c-diff and we just have to wait and see if this makes him better:(  We were also told to use something with Zinc in it to try and heal his little bummy but through this all he has a smile on his face!  I love out little guy so much!  When I got sick at the age of 14 I learned a very important parenting lesson:  You must advocate for your child.  I am sorry it took me so long to put my foot down with this "wait and see crap" but I am glad I finally did and we have an answer lets just hope the new meds work.  They were expensive (for an antibiotic) and not covered by his insurance, it was a good thing Popsie was with me and offered to pay for it otherwise we would be fighting for something covered by insurance.