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

Thursday, July 16, 2009

Summer Marie...officially one year old :)

Summer at her birthday party at the park. It was a nice night with friends and family :)

I have been collecting photos for the last few months for a slide show I just posted here for our little sunshine. I can't believe how great she looks! As I was looking at pictures even from Dec of last year, I was reminded just how sick our little girl has been. Each doctor visit, the nurses and doctors still comment on the great progress she continues to make. Her growth has been fantastic, her body is adjusting to her short bowel, and she still shows no signs of liver disease...this is very amazing for someone in her situation.

On her birthday, Summer had appts. with the neurodevelopment team, and the usual GI team. The neuro team is happy with her progress...there is no set schedule for a baby like her, but if she continues to move forward with speech and motor skillsi, they are happy :) While we waited for the doctor, they brough in a large gift bag full of presents for her :)

Our next stop was lab work at the home care office. We got there and her main nurse had gotten her a birthday balloon...Summer loves balloons and played with the strings through the halls. It was fun to see how excited everyone was for Summer reaching such a big milestone :)

Last stop was the GI clinic. As usual they were happy with her weight gain and progress :) We cut back on a couple of medications and don't have to be back for a month! Yeah :) Next time we go in though, Summer has to have an x-ray to check the placement of her IV line. She has more than doubled her size since it was installed (yeah! ), so it needs to be replaced. Fortuneatly, this will be an elective surgery, not an emergency one. Surgery still doesn't thrill us though :(

Summer now weighs in at 18 lbs. 13 oz...her height, head size, and weight are all growing at the same rate :) She is now in the 25% for height, and 15% for weight...this is up from the 5% for height, and under the 5th % for weight! She is catching up quite nicely :)

Here's her progress for the year:
Born July 14, 2008 at~ 2 lbs. 11 oz. (13 weeks early, 27 weeks 2 days gestation)
2 weeks old~ (got NEC and had 2 emergency surgeries, leaving only 10% of her bowel)
7 weeks~ (had surgery to hook her intestines back together)
2 months~ 7.52 lbs. (had surgery to fix her PDA)
3 months~ 8.14 lbs. (had her baby broviac (IV) installed, we brought her home Oct. 23, 2008)
4 months~ 8.66 lbs.
5 months~ 9.44 lbs. (got really sick and spent New Year's in the hospital, weaned from oxygen)
6 months~ 11.66 lbs.(switched from breastmilk to formula and started gaining more weight)
7 months~ 13.46 lbs. (taken off IV Lipids)
8 months~ 14.76 lbs.
9 months~ 16.08 lbs.
10 months~ 17.67 lbs.
11 months~ 18.48 lbs.
12 months~ 18.83 lbs.

Summer happily playing on the blanket at the park

A tuckered out birthday girl finally at home in her quiet room

Happy birthday girl...she loved playing with this balloon

Balloons also make her sad...they fight back!

She was so tired after her big party, Summer didn't have a chance to try her cake...she doesn't eat much by mouth, so we weren't sure how this would go...we saved a cupcake for her and let her at it the next night...
She batted at the cupcake at first, then accidentally got some in her mouth...she wasn't sure at first, then decided it was pretty good...

yeah for birthday cake!

hmmm, cake isn't so bad

Cute tootsies

Happy Birthday baby!

Tuesday, July 14, 2009

Happy Birthday Summer!!

You've come a long way, baby!
Summer started out at just 2 lbs. 11 oz., had NEC,
5 surgeries, pneumonia, pulmonary hypertension, infections, jaundice, and more...
She spent her first 3 1/2 months in the hospital, then came home with oxygen, TPN, and Lipids.
She has been off oxygen since January and has grown out of her pulmonary hypertension, been weaned off lipids (IV fats) for quite some time, shows no sign of liver disease, and has been weaned to only 12 hours a day on TPN through her IV!
Summer weighs in at 19 + pounds of happiness!
We are so blessed to have this little ray of sunshine in our lives...
We love her more each day :)
Happy Birthday Sweetheart!

Though she is still on her feeding tube and IV, Summer has made huge progress toward weaning off of them...these pictures were taken a few days ago when I had to change her feeding tube out...I take every opportunity I can to take shots of her cute little tubeless face :)
Summer is such a lucky birthday girl, ha ha...we are headed to Children's for appts.this morning, then home for a big celebration with friends and family...
She actually gets to eat her birthday cake too...well, that is, if she figures out what to do with it :)