A busy summer for Summer

Now that Summer is f airly healthy most of the time, she has been able to join us in normal family activities :) Last year we spent all our time at the hospital, so I decided to make up for it and drag my kids every where I possibly could :) In fact, there was a time when the boys begged me to let them stay home on the couch, haha...they are glad school has started! Life is starting to feel very "normal" again! Right after school was out in June, my sister and I took the kids to Great Wolf Lodge, an indoor water park. Though Summer isn't water proof, she still seemed to enjoy hanging out with Aunt Debbie and even dipped her toes in the pool.

July was very busy. My good friend, Melanie, got married on the 4th...Summer came along as my photo shooting buddy :) The 14th was her birthday...she got to eat cake for the first time. My oldest sister and her family came in to town and met her for the first time...we went to the beach and Woodland Park Zoo with them. The 18-22nd we went to Ensign Ranch with Tom's family, and stayed in the lodge there. We also went to Point Defiance Zoo and she got to spend a couple of days home alone with Daddy while mom and the other kids went camping.

Summer went with me and little Tom to Scout day camp

My friend, Lynette, and Micaela (below), holding Summer at her birthday party in the park

My nephew Michael holding Summer at the beach

Summer was all tuckered out at the zoo...she loves to sleep like this with little Tom

Summer and Aunt Kathy at the zoo

Cute baby in the stroller :)

Hanging out with Grandma Cameron while we all played on the waterslide at Ensign Ranch

My hubby thinks it's funny to put Summer in strange places....she seemed to think the sink was pretty funny too :)

Brianna and Summer watching the horses in the pasture in front of our lodge at Ensign Ranch

Grandma Cameron with Brianna, Summer, and Emily

Summer likes the fish at the zoo

We had a lot of HOT days/nights in July...it reached 100 degrees! Summer and I would stay up until the house cooled down a little to shut the windows before bed...she usually sacked out on the floor...so cute

Cute sleepy baby

Gotta love the 1 year old chub :)

Every baby has to have a picture like this!

The shark tank at Pt. Defiance...the kids layed and watched them swim for about an hour...Summer joined right in

Emily and Summer with a sleepy shark

Brianna and Summer at the zoo

Sisters

August was filled with trips to the zoo, Northwest Trek, a visit from cousin, Stephen, and a couple of trips to the Pacific Science Center in Seattle. I took a quick over night girls' trip to Leavenworth and Summer got to come along. We ended the summer on a family trip to Zion's camp in Belfair, WA. Fortunately, due to Summer's medical needs, we rented a cabin. We all got sick and were glad to be indoors!

Morgan took this picture of Andrew, Summer and me on a beach in Seattle

Grandpa Norris and Summer on the tram at NW Trek

She may not be able to drink juice, but Summer sure liked "eating" the box

Little Tom and Summer with some huge turtles at the Reptile Zoo in Monroe

Summer and the Space Needle from inside the Science Center

Stroller baby...little Tom took this pic :)

Morgan loves swinging Summer...this is at a park in our neighborhood...Summer loves it too!

Sleepy pirate loves her sealife....Inky the octopus was given to her by her doc at Children's....she loves chewing on all 8 legs! :) It's now official...all my kids love seafood despite my feelings about it :)

Summer is modeling the circlet I bought for Morgan in Leavenworth

Cutie at 13 months old

Summer and I in Leavenworth, WA

Summer is happy even when she is sick!

She's sitting on Daddy's lap on the beach at Zion's camp

Summer chews on everything....I handed her a baby carrot and she went to town on it for a long time. She usually prefers fingers though....she will grab your finger and scrape it back and forth on her two tiny, sharp teeth...ouch!

Summer loves her Daddy...she has a special whine for him to pick her up...she even says Dadda

Going for a ride at Zion's camp

Summer is now trying to kick a mild case of pneumonia, which we caught very early, thankfully! She is no worse for wear....still smiling and giggling through it all :) Since we have been fighting a couple of ear infections and pneumonia, we have spent quite a bit of time at the pediatrician's office...Summer now weighs in at 19 pounds, 4 ounces and is getting taller all the time. Her food had been turned up at the last Childrens' clinic visit and she has been gaining weight again nicely. When we went in last, she had only gained .06 grams, but had grown 2 cm's...they are still very pleased with her overall progress :)

The OT/PT still comes to our house every 2 weeks to work with Summer... she is still making small, but mighty steps in her development! Summer now rolls over (sometimes) and is getting stronger back/torso muscles. She also pushes herself up on her elbows and hands while on her tummy.

It is strange to have a 14 month old baby who still does "little baby" things, but it is also very fun too...she is still so cuddly...can't get enough of that! Summer is doing so well now that she only has to go to clinic once every 4 weeks...next update will be in 2 weeks :) We do have another appt. next Tues. the 8th, with the pediatrician to check her lungs...it seems like she is kicking the pnemonia fairly quickly :)

I will have more time to blog now that we are back in school...hopefully I won't have to play catchup quite so much!

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!

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 :)

Summer's doing great!!!

Life has been busy...mostly in a good way :) In the last few weeks, Summer has made some big steps toward weaning herself off of TPN. At the last visit, she had her time reduced to 14 hours on, 10 off. This last week , she had gained 16 grams a day (her goal is 11-13 grams per day) so it was obvious that she didn't need all the calories she was getting. She is now running the IV for 12 hours with the other 12 hours off! We have also increased her NG feeds to 55 ML's per hour and she is eating more solids...she has decided that squash isn't too terrible and the rice cereal is ok too :) It is hard to remember to feed her though...as funny as this sounds. With any other baby, they cry when hungry so you don't have to think about it. Summer is always full and doesn't know the feeling of hunger, so it is a matter of scheduling it in...one more thing to our busy days :) Well, despite the fact that I forget to feed my child (ha ha) she has not suffered...she is now 18 1/2 pounds!

Physical therapy has been going on once a week and Summer is making some good progress. She has been changing in little ways each time the therapist comes...and doing so well, she is ok to take the next few weeks off while we have scheduling conflicts. Summer is still not rolling over yet, but getting close. She is using her hands a lot more, and has really good neck/back control while on her tummy. I have to admit, though I want her to progress, it is fun having a "little" cuddly baby for a little longer than I would have had otherwise :)

She had an eye appt. a few weeks ago too. The muscle control issue in her right eye has gotten better, though we still have to patch her eye to help it continue to improve. They also repeated and eye exam and her vision is completely normal in both eyes...yeah Summer!

She turns one in a couple of weeks....I look forward to her eating birthday cake!

Look closely and you will see the 2 teeth that have sprouted in Summer's mouth this last month!

Summer loves this play gym...she jabbers to herself in the mirror

She is getting good at lifting herself up on her elbows...and still loves her tongue : p


Check out what a multi-tasking mama I have become! I went to the beach with some friends...Summer loved the backpack...she even feel asleep in it :)

Cutie close-up

Happy girl at lunch time on the beach

I got some cute pics while trying to get Summer to show her teeth...

See my teeth!

Summer loves to cuddle with Daddy :) Look how big she is!