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, April 24, 2010

Overdue update

Look at her go! Summer has been making progress recently in many areas :) This pic was taken today while she played with Morgan, who was sitting on the chair. She still can't sit up on her own, or pull herself up, but if I put her on her knees, she can hold onto this kid size chair for a few minutes. Her neck and back are getting stronger all the time.

So, it has been a while since I wrote any updates and Summer has been busy! She has been to the beach, had her G tube changed out, grown her hair long enough for pigtails, gained a little wighed, battled ear infections, eaten cheetos, and even met a dinosaur! But, what better way to show what's she been up to, than to post lots of pics?

Picnic in March to Carkeek park in Seattle...Summer loves the wind in her face, especially when she is up high on my back ;)

After a long day, Summer took a load off with her Wooley Mammoth as a pillow....zzzzz

Little feet, not so little anymore! They are about twice as big as they were when Summer was born....though still tiny in comparison to her age :)

Little eyes....we have had a couple of trips to the Opthomologist to check her eye progress. Both eyes are working together now and testing the same. She can focus and lock in on objects at a close distance and her farther distance vision is coming along. :)

Likea little green pea :)

Summer loves the remote and screams at my hubby if he dares to use it!

Grandma and me!

Ok, done with the glasses now....

Wheeee! Tom loves to give Summer piggy back rides.

You know, most people hate it when you read over their shoulder....
This dinosaur at the Science Center, smiled at Summer...she got a little worried...
Summer is getting big! She is now taller than the Space!

Summer at therapy...we have one of these balls at home...she thinks it's great fun to bounce and roll around on it. Colleen says this will help strengthen her back and abdominal muscles. We go to physical therapy every 2 weeks, alternating with feeding therapy. Her feeding therapist is incredible! At our last visit, she introduced Summer to puffy cheetos....they are crunchy, salty, and they melt in your mouth. Summer has a hyper gag reflex, so alot of what even gets near her mouth makes her throw up. Getting her to really eat is going to take a lot of time....

Summer is still pretty stiff in her legs, so we work with her muscles to get them to stretch.

The girls are packed and ready to go on our Spring Break trip....the day after Easter :)

Easter moring....Summer got a ball in her basket.

Grandma Norris...Easter

Did I tell you how much she loves my camera? Maybe she thinks IT is her real mommy?

Grandpa Norris

It was chilly, but we always have so many Easter eggs to hide, there is no way we can move indoors!

Summer was most impressed with a shiny orange egg she played with

Morgan and Summer

Spring Break! We went to the Oregon coast for the week with some friends from Utah. It was beautiful....we had a great time!

Daddy and Summer at the Sea Lion caves

Summer and Leah...lunchtime at the beach house

@ the Evergreen Air and Space Museum....the kids had fun using Summer like a race car!

Summer is "tired" ... haha...

Andrew and Summer

Andrew, Summer, and mom in the hot tub at our beach house...Summer's first official swim!

Summer had a great time in the hot tub....we had all 9 kids in there at one point!

Me and the kids

After splashing around in the hot tub, Sumemr was bushed!

Summer and Bekah playing on the beach

Me, Tom, and Summer on the beach in Lincoln City, OR

Enjoying a cheeto at a rest stop on the way home

Even not eating in your high chair can make you very sleepy!

After a lesson in proper pigtail accessories, Summer's new doo is complete!
...and this is what it looks like after a good cheeto/snot rubbing and some cuddling with daddy....

Wow! It got even better in the morning....only the bathtub can tame this mane!

And then, there's the G Tube saga......

With everything comes a saga....the G Tube has been no exception. She had a "Bard" button placed surgically, Jan 21, 2010. Just a few weeks later, she started developing granulated tissue around the site. This is fairly normal, especially in kids who have had their button sutured in, and can be painful. Summer's started to rub raw and bleed, so we went in and had it cauterized with silver nitrate. They applied it and sent me home with some to repeat if needed. At the beginning of April, just before we went out of town, I cauterized the site again. Some of the silver nitrate got on Summer's fingers and mine too. It took about a week for the staining to go away, but getting in the hot tub helped it go away quicker :) At first, I thought we had been burned by it somehow....not a fun way to start our vacation....fortunately, it was not the case!

This is what it looked like before....with the Bard button.

The Bard button has tubing that plugs into the small hole in the rubber. It plugs and un-plugs so easily that Summer figured out how to do it herself. Silly girl....we had to make sure she always had a shirt on, or the minute we turned around, she was un-plugging it, the pump was still pumping formula and leaving a huge puddle...

I guess she thought we didn't have enough to clean up?

2 weeks ago, we went to Children's and had her G Tube changed to an AMT Mini-one button. We had to go to the general surgery clinic and see a nurse practitioner. I knew how they were going to do it, but it was still NOT pleasant....especially for Summer, of course! She didn't use anything to numb the area, grabbed the Bard button, and RIPPED it out! Literally! The Bard has a mushroom shaped valve that holds the button in, that doesn't inflate or deflate when inserted or removed. She explained that it would feel much like a shot, and summer would settle down quickly. Well, after I heard the loud POP!, Summer screamed in pain, like I hadn't heard her before. Poor baby.... The nurse then inserted the new button (which, thankfully, is just the tube with an inflatable balloon at the end), and handed her to me. Summer kept crying and looking at the nurse... She was very sore for about a week, but is much better now.

Close-up of the new button....I love it! It works with a key hole method. The tubing end has to be matched to the slot, pressed down, and turned to "lock" it in place. I was given an extra button that I can replace if this one is more painful ripping out of the G tube! As you can see, her belly is looking better all the time...her newest incision is healing nicely, and her old Broviac site is healing well too. And, though it is still horrid, her abdomen looks better too.... Yes, folks, this girl will NOT wear a bikini ;)

Happy Summer...loves baby dolls!

At this point, Summer weighs 21 pounds, 4 ounces! Thanks for the continued prayers and well wishes in her behalf...she has definitely been blessed, and is a blessing in our lives! :)