After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Saturday, June 19, 2010

Summer speaks out....

On a lighter note....

I have to share something that happened a couple of weeks ago at church. Summer is somewhat like a celebrity at church these days. We have been around so long that most of the people who have been here in this area for at least 3 years know of our family saga. Every week I come to church with my cute, happy, cheerful little girl...we get adoring looks from the grandmas and ah's and oh's from many others. They have watched her go from being every color in the rainbow, face taped, oxygen in tow, tubes dangling, backpack weighing more than her... to her naked cheeked, healthy looking self she is today.

So, this "danty" little girl on the pedastool decided to show off her stuff. The Relief Society room was fairly silent...not many babies in tow that day for some reason. So, with the teacher in mid-sentence, Summer let fly with the loudest, longest string of gas she could. At first, it caught everyone off guard, then, as it continued, there were scattered giggles. When the teacher paused, Summer continued for what seemed like an eternity...though was really only about 15 seconds. Everyone smiled in my direction as I smiled a sheepish smile back and Summer made her announcement....


This is what she says anytime a gas-like noise comes from either end or she throws up, haha! A
nd, all it took to learn it was my hubby asking her if she burped once...she was obviously impressed! Oh, my daughter is so demure! I excused myself and headed for the restroom to change her. Silly, silly, innocent girl :)

Her language has been taking off recently with quite the list of words she likes to say including; burp, happy, mommy, daddy, hi, bye, baby, ball, uh oh (some of her firsts), grampa, nose, eye, toes, ow (this one she says with a grin as she gouges your eyes out or scratching you), dis (this), and most recently, woopsh, wheee, oh, whoa, no, don't, and a few more she picks up daily. It is so fun to hear her talking! We start speech therapy next week to help her catch up...she's off to a great start!

Thursday, June 17, 2010

The vicious cycle...

Summer has spent the last few months dealing with ear infections. Okay, though this is a normal baby thing to do, and not a real surprise in our house, I am ready to be done with it! She has had 6 infections since February! And, being the unique and wonderful child that she is, she does it in a fashion all her own. When you think ear infection, you generally assume the kid has cold symptoms...cough, runny nose, sneezing, etc. But, not Summer! Her symptom of choice is projectile vomiting! Yes, you heard me right...the big up-chuck.

The first time this happened, she had been throwing up for a couple of days without it letting up. This was shortly after her new G-tube was installed, so naturally I assumed she was having bowel issues. Off to the ER we went for tests. Expecting a bowel obstruction....both the docs and I....they ran the typical tests to check for that. After about 6 hours in triage, they said, oh, I guess it must be the ear infection! Uh....OKay. I have had 2 out of 3 of my other kids who have had 2 sets of ear tubes by age 2, and neither of them EVER projectile vomited. I guess Summer is just "lucky".

Their theory was that since her stomach is full most of the time, the change in pressure in her ears and the dizziness it can cause, mixed with the full tummy, made her nauseous. Oh, yay. So, they sent us home with antibiotics in hand and directions to follow up with the pediatrician. Little did I know how often that would be!

So, started the cycle...barf, ear infection, lose weight, so on antibiotics. Gain weight, get ear infection, barf, lose weight, go on antibiotics.....and so on. She has managed to be between 20 lbs. 15 oz. and 21 lbs. 8 oz. now for the past 3 months. This is not exactly ideal, but the transplant docs aren't too worried since her rolls are still in tact :) They figure once we get the ear infections taken care of, this cycle will end and she can go back to gaining weight.

Well, in the mean time, she has had several different antibiotics....two of which have worked, but one she took two different times, caused some very serious side affects which, you guessed it, landed us in the ER! Her symptoms were so horrible they thought she had a bowel obstruction, again...she had a VERY bloated belly, and was obviously in pain. Fortunately, it ended up being a reaction to the antibiotic, Omnicef. Unfortunately, it took the ER trip and 3 days of horrible tests to find this out....including an x-ray, an ultrasound, blood work, and a Barium enema with an upper GI study. Poor baby. The barium enema did end up releasing the extra gas and relieved the pain.....but, it was NOT pretty!

So, the next time she took Omnicef, she started showing the same symptoms and to the Internet I went! I googled the med and found some information that was a big "DUH" to me. Here's just a few of the gems that she had in common with the list of "rare" side affects:
severe abdominal pain
dyspepsia (excess gas)

Some symptoms that she didn't have, but would be devastating were: Upper GI bleed, hemorrhagic colitis, and psuedomembranous colitis, and bloody diarrhea.

Anything with the word "colitis" in it is a real turn off for this kid! So, no more Omnicef for her!

Another approach they have tried was antibiotic injections....2 shots each day, 3 days in a row....this helped the ear infection, but made Summer cry for an hour after each time and made her scared of her nurse. Since she has seen her A LOT lately (we were at the pediatrician 8 times in one month!!), it makes her cry every time we were at the doctor. It took almost a month for her to forgive poor Trish.

So, we just finished our recent dose of antibiotics and have been to the ENT at Children's. They tested her hearing and did not find anything glaringly fact, her ears tested fairly well :) They also asked how she fared with each ear infection. When I explained her lovely reactions, they said, "so, you thinking tubes?" I said, "yep", and off to the surgery scheduler we went. Easiest appointment ever! The earliest they could fit her in is Aug. we are holding our breath until then.....gasp!