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, January 30, 2010

Splish, splash, Summer's takin' a bath!!

Now that Summer's Broviac (IV) is gone (you can see the stitches and steri-strips on her right side), she is water proof! It's amazing what little things we take for granted....like being able to take a "real" bath. Up to this point, Summer has gotten a sponge bath just about every day in her bed. She hasn't really liked it much since she has to be hanging out, cold, and wet.
Yesterday I gave her a small dip in the baby bathtub we have been using with the hammock in it. This tub, is, of course, made for a much smaller baby...but, since Summer doesn't sit up on her own, this was a good option to keep her from being immersed. I took the hammock out and set her in it....it was much too small, but we made it work.
Today I climbed up in the attic and brought down the bigger baby bathtub we have had for years. Our other kids have all been so big at a young age that we had to search for this tub. One of our sons was 20 pounds by the time he was 6 months old! Thankfully, Summer, at just over 20 pounds, fits just perfect in it :) She stayed in the tub until nice and pruney, kicking, splashing, and giggling. I think it's safe to say, she likes the water :) Morgan even climbed in beside her....it usually takes a force of nature to get her in the tub! I'm sure Summer would agree with me if she could....I love having one more bit of "normal" added to her life :)
Oops....water got in her eye...

...all better now!

Yay!, but what is this stuff?

Summer wasn't so sure she should put her feet and hands in it...

2nd try....she loves this deeper tub :)

The girls

Summer loves barbies...she had fun with this mermaid

Happy bath day!

video


Thursday, January 28, 2010

Ooops!

Every month we have a certain week we are supposed to order feeding supplies for Summer to last the next month. Well, this is our week to do it....when I checked the cabinet that we keep her formula in, I discovered something odd. They normally send us 19 cans a month to take care of the amount she drinks, but I still have 17 cans in there! Wow....have I not been feeding her? That is obviously not the case, just look at those thigh rolls :) This has been happening most months, but it is usually not this many cans. I have just been dismissing it since whenever we go in to the hospital for a few days, which we have several times in the past few months, the formula sits her accumulating.

OK, so bad mommy! I thought 17 cans might be a little ridiculous, so I called the nutritionist to double check our recipe. Sure enough, I have been mixing the formula wrong for 15 months! Doh!! Usually, when making a formula bottle, most people put in the amount of water they need, then the scoop of formula, and mix. I have been doing this. Well, for Summer's recipe, I am supposed to add the formula first, then water to the amount I need. This, of course, makes a huge difference in water volume! Her formula has not been as concentrated as it should be, so she is being pumped full of lots of extra water she doesn't need.....and I have wondered why her diapers are the way they are?

So, live and learn. Perhaps this was divine intervention of some sort....maybe the extra water helped her along faster than they thought she would? Who knows. We started mixing it right yesterday and her stools have already slowed down :) :) :) This, is a good thing!

Yesterday Summer started getting a diaper rash again. Not happy about this! She has gone 4 months rash free... The poor little thing was so sad, I left her little bum hanging out most of the day to try and air it out...this does not make for a happy baby. And, not to mention the lovely mess it creates. Ah well, I guess with the good comes the bad at times....All the successes were maybe too good to be true.

Still, her Broviac is gone, the nose noodle is gone, and the G tube has been working/healing nicely. Her incisions are looking good too. Today is one week from surgery, so tomorrow is bath time! Good thing....maybe it will help her rash to soak a little :)

We are really loving our tape less faced girl :) It's even hard to compare how she looked with the nose noodle already!

Friday, January 22, 2010

The Legend of the Short Gut Wonder!

Here she is! One day after surgery....no more NG tube or Broviac (IV)...
You can see a few new teeth coming in.
Beautiful isn't she?

I have decided to rename Summer's blog. This visit to the hospital has confirmed all our beliefs that she truly IS a MIRACLE! And, I have a feeling the docs are going to be talking about her for a long time :)

Yesterday Summer had her surgery...removal of the Broviac and G tube placement. As usual, we talked with the surgeon before hand. He has been very concerned about where to go in to place the G tube. So concerned that he ordered copies of her chart(s) (apparently it is a 9 volume chart!) to review the history of her gut surgeries. He was worried that he could jeapardize her intestines and impeed the progress she has made if he went in at the wrong place. Her stomach is now behind her intestines and he felt like there would be a lot of scar tissue to work around. There was a big possibility that her liver may be inflamed and her intestines could be fused to the abdominal wall. Yikes! So, he explained to us that he may have to make a much larger incision in her belly than originally thought, creating a large "T" scar....cosmetically not a great option. Or, he could start in the old incision and back out if he felt it was too risky, then cut into the belly higher up.

When he got into the OR and Summer was asleep, he was able to examine her better...he discovered her very dialated intestines (a good thing for her...more surface area on them means better absorption) were very close to the surface. In fact, under her incision scar, there are a few layers of skin, but no abdominal wall to protect them. If he would have cut into that, it would have been "ugly", he said. He told us that her liver is in excellent shape, which is unusual in short gut kids...it is a nice healthy size, not enlarged like it would be if it were damaged or diseased.

When surgery was over (it only took 2 hours instead of his projected 2.5-3+ hours), he came out to talk to us. He had a big smile on his face....always nice to see from a surgeon! He said we got the best of both worlds. He was able to make a small (about one inch) incision to access the gut, avoiding the intestines almost completely, and place the G tube without any trouble. We were all so relieved it worked out that way! He felt confident that Summer could recover nicely since he didn't have to disturb the intestines...phew!

Summer has been doing fairly well. The first day/night she was in a lot of pain. Her heart rate was fluctuating and even got as high as 200 at a couple of points...normal shoud be about 120. She was also very swollen and red and very sensitive. They gave her Tylenol and Morphine for the pain, but the Morphine made her very jumpy and jittery. She also ran a low grade fever most of the day and so they were concerned she may be developing an infection.

This morning her fever was gone and as the day went on, she didn't need Morphine. The swelling started going down, and she has now pooped 4 times! Yippee...what a fun thing to celebrate ;) For her, it is the best thing ever! The first time she went, she was acting like she was in pain, then had some very loud, loaded gas...then, smiled and laughed! It was so funny...she was definitely telling us she was feeling better. :)

They started her feeds this morning, via her G tube, at 20 ML's per hour and have increased it by 20 ML's every 3 hours. She just got turned up to 100 ML's and will be increased to 105 (what she came in at) very shortly. As long as all continues to go well with her feeds, she will be discharged tomorrow :) That is, of course, after I get my free parent massage, haha!

So, to explain the renaming of her blog...while we have been here, we have heard the same things for the last two days from docs and nurses....

No one thought Summer would make it this far. The entire surgical team is amazed with her progress...the resident that did rounds tonight said when he was talking about her during their briefing, they all did a double take and said "you're kidding me! Summer Cameron? But, she was left with only 10% of her bowel! ...and she is tollerating full feeds? ....and just had a G tube put in??" Our nurses have all been very surprised too. One of them said it is unheard of for a baby like Summer, with only 10% left, to be getting a G tube, tollerating her feeds (most kids like her can only make it to 20-30 ML's per hour, she is at 105!), and be off TPN! Everyone is thrilled to see her....they told me she is definitely the exception to the rule, as all the other short gut kids like her are very sick. Summer's bum is still crystal clear....that is something that is unusual too...most short gut kids have nasty rashes all the time, like she used too. Everyone keeps congratulating me and commending me on a job well done....I say, Good job Summer! Way to prove them all wrong!
So, in lew of the legendary status my little person is obviously gaining, I am giving her the title " The Short Gut Wonder"....defying odds whenever she can :) She deserves applause! And, I have a feeling this little girl is going to be very spoiled....well, she deserves it! :)

The night before surgery...Broviac still in....

Giving mom "5"...the last time we had to flush her line! Sorry Summer, no moe saline flush syringes to play with!

Summer's TPN tray....soon to be retired....now we're making COOKIES!

Daddy cuddles after surgery. Whenever Tom and I are both here, she picks him to comfort her....I think he likes it :)


While I was uploading the photos to this post, Summer was watching me...she saw this photo and started chanting "Da, da....da, da"....she usually says it with a whisper...too cute.

Daddy cuddles with his movie player...always in tow :)

Summer starting to open her eyes, but not feeling quite herself yet

Later, after Tom left, Summer stared having moments of happy smiles...she even posed for me with her doctor bunny she got for Christmas

Happy girl

This afternoon she was feeling even better...her shiny disposistion is slowly creeping back...
She even said a few new words today....the nurse asked her to give her "5"...Summer said "Fye" and gave her 5 :) She was crying a little when the nurses came near her and she said "My momma"....it melted my heart! :)

I think I might have to take more photos than usual now that every day is a "no tape" day!

Some "after" shots...this is the G tube...it looks like an inflatable ball plug. this tube is to vent the after surgery gas....

The feeding tube plugged in...her new attachment...but we can hide it now! Goodbye nosey strangers! (I hope)

Summer this evening after a few poops....she is feeling so much better! She loves her "ba ba" (baby doll)

Have a good sleep....for tomorrow we may go home!

Tuesday, January 19, 2010

Movin' and a Shakin'

Look at her go!

Wow! Something finally clicked and Summer is moving :) She has been rolling over from her back to her stomach for a long time, but it has been with a lot of effort and thought. Then, when she would get to her tummy, she would get frustrated and cry. Today she had a therapy session (this time at the therapy center instead of the therapist coming to our house as usual), and it made a huge difference! Summer has been crying whenever the therapist has come to work her at our house....at least the last 4 or 5 times. We decided at the last session we would try working her at the center with all their equipment. Well, it seemed to work :) Summer babbled and talked and started flipping from back to stomach and vise versa with little to no effort. She has been extremely happy (even happier than her usual ridiculously happy mode) with herself today :) She's been rolling around with glee :) Even finding little bits on the carpet to investigate....ah, the fun begins! YAY!


video


This last weekend, I took her with me on a trip to the ocean with my girlfriends. Summer was great, as usual, but had a lot of acid reflux and was throwing up almost the whole time. We went to the doctor today and he increased her acid reducers to help. In just 2 days, Summer will have her G tube put in and her IV removed! The IV has been a long time coming :) :) :)....and the G tube will be so much better for her. I'm hoping that it really does make a big difference with her acid reflux and over all eating ability...her gag reflex is sometimes very sensitive :( In fact, this weekend when I attempted to feed her, it just took me touching her lips with the spoon containing a small drop of food to get her to throw up.....I'm hoping that goes away!
Cross your fingers, say prayers, send positive thoughts.....surgery is this Thurs. Jan 21st :)

Summer loves her aunt Debbie :)

Mom and Summer on the beach at Ocean Shores, WA...it was windy...Summer loved it....she would put her face to the wind and grin!


Summer's quilt! My friend Yvonne put the top together for me while I was on bed rest....
19 months later it's done! Phew :)

What a goofy look!!
Summer caught red handed...she was hanging out on the bed with the girls and attacked Angie's feet....hehehehehe :)

Tuesday, January 5, 2010

Celebration time!

IT'S OFFICIAL!

SUMMER IS NOW OFF TPN PERMANENTLY.....THE BROVIAC (IV) COMES OUT JANUARY 21st!

We are so excited for this HUGE milestone to be met. Even today in clinic, the nutritionist told me she has often wondered if Summer would always need a little TPN to keep her going, but NO! She is also surprised by how fast they were able to get her off it....of course, 15 monts of it at home, has seemed like an eternity to us! Summer has been off the TPN now for 4 weeks and has held steady with her blood sugar and other body chemistry levels to take it away for good :) Today she weighed in just 10 grams more that 2 weeks ago, but the Doc. wasn't worried....she has some good reserve and has always moved forward in her growth.

So, in just 2 1/2 weeks, our daughter will have one less tube...no more worry of a blood infection, her pulling it out, no more huge medical supply deliveries, IV care......one, BIG, less thing to do and worry about.

WOOOOOOOOOOOHOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!

Bath tubs, swimming pools and hot tubs, here she comes!