Taking a stand

Summer's been working hard for the last few months at balancing and holding herself up to the couch on her knees....
...so I tried to get her to stand up by pushing up on her bum...."Whoa", she said....when she gets tired she says "heavy"...yes, she is getting heavy for me to hold up too...haha.

I let go...then she figured out how to use the cup holders to help her...

....she was delighted!

...though her legs aren't straight and her feet are not flat on the floor, YET, she will get there! This is one determined little girl :)

Spinach milkshakes, a waterfall, and some pumpkins.

Yum. I know you are thinking it. So, let me explain.



A recipe for the perfect Spinach/potato milkshake:

2 Tbs. Organic Spinach/potato baby food puree

4 oz. Elecare formula (Hypoallergenic, Amino based, elemental goodness)

A plastic bottle

A huge syringe and tubing



Measure 4 oz. formula into the plastic bottle, add 2 Tbs. food puree, secure lid, and shake until blended. Mixture will be a light, delicious green color. Use large plastic syringe to suck up mixture, add tubing, plug into Summer's tummy, and enjoy!



Again, I will say it for you, YUM!



Summer's feeding therapist suggested we try "real" food through her G-tube. She feels that the food will help with Summer's vomiting episodes, and help her digestion and overall well being. We have been giving her one feeding of this delicious concoction every day for the last few weeks and it seems to be doing the trick! Summer hasn't had any major vomiting issues for the last month and a half :) She has also been gaining weight like a champ....1 lb. 11 oz. in the last 20 days! :) :) :) She now weighs in at 23 lbs. 6 oz.! This is great for her, not so great for our backs....groan. Oh well, the price we pay for success :P We'll take it....Summer has struggled with her weight for the last 10 months.... A couple of days ago, I spoon fed her some baby sweet potatoes. In the past, she would gag and throw up if someone else was controlling the spoon, and she wouldn't put it in herself. She only gagged a little bit, then actually swallowed about 2 Tbs. of it! Wow, we were excited! I am hoping this is going to be the continuing trend from now on...

Summer has been making lots of little progressive steps too. She is our little parrot...we have to really watch what we say, haha! Here's some more of what she's been up to...

Summer loves to read...it relaxes her :)

Morgan loves Summer....she always wants her to cuddle in her bed and read.

Daddy put her in this box and she thought it was hilarious....she blows kisses now too.

Summer does well when we put her on her knees. She loves to go through the books in the cabinet.

Her first bath in the sink. She is still very unsteady so she was very slippery....had to snap this one quick ;)

About a month ago, Summer started lifting up on her knees while holding onto something. She says she is "jumpin". Her legs are getting stronger all the time...she can stand for a bit while holding onto the couch! She has a long way to go, but she is very enthusiastic and excited that she has realized she can do more :)

Summer enjoyed a cupcake during Morgan's preschool...don't think she actually ingested any, but she sure enjoyed crumbling it!

Summer hitching a ride with Grandma at NW Trek Wildlife park. She loves to be outside and loves the animals.

Morgan and Summer

Summer at the park

Summer's cousins, Katie and Kim visited in Oct.

Look at Summer! It was just a couple of months ago that she wouldn't even put weight on her legs.

We visited the park with her cousins...Obviously, Summer cannot read....she tossed this fry at a duck and said "Hab it!" That was one happy duck ;)

Snoqualmie Falls with Grandma and Grandpa

Grandpa Norris adores her :)

We visited the Pumpkin patch with Morgan's preschool...check out mommy's little pumpkins ;)

Mom, Summer, and Morgan

Cousin Kim and Summer at the Pumpkin patch

Summer!

Summer and my friend's baby, Emery. He is rolling all over the place and loves to go right for Summer's backpack. She is getting a little protective of her backpack, but thought he was funny. We have been putting these braces on her legs every day for at least an hour, it's helped the muscles in her legs stretch a great deal...this has made a huge difference for her :)

Summer came with us to little Tom's swim party. She shrieks and giggles every time she catches sight of a pool. She must have kicked her legs for about 1 1/2 hours straight in the water :) The therapy center that she goes to, has recommended her for water therapy. She will hopefully be starting in the next couple of months. She's going to love it, I can't wait!

Summer and Andrew

Summer used to have a hard time sitting in these wooden restaurant high chairs, but does much better now. She has also started refining her fine motor skills. She loves to try to color and draw...look how well she holds this crayon!

Halloween Trunk or Treat at our church. Summer got a sucker and held onto it the whole time. Morgan would say "Trick or treat" get her candy, and Summer would say "Thank you" each time. Her diction is really clear.

Morgan and Summer

Halloween night

She can say "pumpkin" and "Howoween"!

Grandma and Grandpa came trick or treating....Summer wasn't real sure she recognized them, haha.

LOOK MA! No hands!

It's been a long time coming, but look at her go! Summer can sit on her own (after we place her that way, but we'll take it!) for a couple of minutes and even play using two hands at once! Wow! She has been getting very frustrated lately that she can't do all she wants to. Up to this point, she has been able to roll over, but doesn't do it very often. She also has had a hard time keeping her balance to hold herself up on her own. Even when in her highchair or Bumbo seat, she would get tired and end up leaning to one side, then couldn't straighten herself up. We took her swimming at Great Wolf Lodge for a couple of days and for some reason, she now has the ability and desire to move more and sit up :) We are so happy to see progress....it has been a long time since she has made such a BIG leap!

Today was speech therapy and the program coordinator came with her. We talked over goals for Summer for the next 6 months, reviewed our previous goals, and even checked off a few she has completed :) We are stepping up on both OT and Speech therapy from every other week to every week. Though my schedule will fill up a bit more, sigh, I am excited to think that this will help Summer progress faster and further....keeping my fingers crossed!

Here's some random cuteness too...
Morgan reading a story to Summer

Riding the carousel at the zoo

Summer LOVES to swing!

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....



"BURP!"



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!

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:
vomiting
constipation
severe abdominal pain
dyspepsia (excess gas)
diarrhea

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 wrong...in 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. 18....so we are holding our breath until then.....gasp!

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 Needle...wow!

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 faulty....no 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! :)