Late one night

After Carson fell asleep tonight and Eli finished getting a bolus feeding, the house was filled with giggles. I grabbed my new Nikon CoolPix camera (thanks mom and dad) and started shooting. Isn't three a fun age?

Brotherly Love

Merry Christmas to All

I am not going to write a long drawn out post about each toy, book, funny comment, or argument the boys had over the four Christmas celebrations we had this year. There was so much joy and celebration in Carson and Elias' eyes and the magic of Christmas oozed from their beings this year. Each moment was filled with family and friends in addition to great food and fun. Thank you everyone for making this holiday season one of the best ever. Our family is truly blessed to be surrounded by such caring and loving people. Merry Christmas!

Ouch! Rearended...

Oh how I wish the roads were always dry and no one got into car accidents. We were on our way to TN this afternoon to celebrate Christmas. Unfortunately the weather about two hours into our drive decide to turn from windy to freezing rain and snow creating a lovely sheen across the highway. After slowing to a crawl (or about 25 mph) then hitting a bridge of solid ice and almost running under an 18 wheeler, Al saved our lives and corrected the slide and stopped the car in our own lane.

Whew. We were safe. We thought.

Five seconds later as I turned my head towards the back seat to make sure the boys were okay, an old Ford Ranger slammed into the back of us. Ouch! I shouldn't have done that. Thankfully Al and the boys are fine and I only have some fun whiplash to deal with. The cops were called but were only responding to non-injury accidents due to the number of severe accidents around the area. Crap. Exchange info, call insurance, calm the kiddos, oh...and ourselves too. Then we find out the guy who hit us has a MO license along with expired Arkansas plates!! But we were saved because he intelligently bought car insurance on December 10th. Whew.

Geico sent Enterprise out with a car to pick us up and a tow truck out to get Al's car to the shop. The entire back end will new replaced and maybe some frame straightening. Geico was wonderful and we can't say enough great things about them. We were set up in a rental car and our car was towed to the shop all within 35 minutes. The kids didn't get cranky and our rental was a brand new 2009 with less than 1000 miles on it. Everything has worked out until the weather got worse and we ended up in a hotel honeymoon suite with both kids for the night. We'll see TN in the morning once things settle down and we don't have to ice skate south.

School Gifts

Today our loving boys each brought home a school made Christmas gift for us.
There is no material gift more special than getting presents created from the hands and love of your children. Unpacking the boxes to decorate the tree and house each year is always sentimental because of those painted wooden boxes or those beaded wreaths. Every item brings a memory and takes you right back to your child at that age. Carson and Elias added to our priceless collection today with two wonderful additions.

Carson's gift came first stuffed into a manila envelope covered in crayon writing and pictures. It said "To Mommy and Daddy. -- From Carson" He had a silly grin on his face and we could tell how proud he was of the contents inside. Al and I opened the envelope and inside was a beautiful clay wreath ornament hung with a nice red ribbon. On the back his name and the year were scratched into the clay with a toothpick so next year we can look back and remember this moment.



Elias came bearing a long tube shaped package wrapped in white paper painted with red and green splatters and tied with red ribbon at the ends. He kept saying, "Open it! Open it! I made it!". Inside was a wall hanging with green painted hand prints in the shape of a wreath along with fingerprint holly berries. It will hang next to Carson's reindeer wall hanging from a few years ago next Christmas season when we decorate once more.




I hope everyone out there with little kids is having fun with their handmade school gifts and enjoying the holidays with their little miracle. We certainly are.

We have Kittens!!

This morning our mama rat Storm gave birth to four bouncing baby rats. She has been waddling around for the past few weeks looking more and more uncomfortable and this morning we woke up to the sound of tiny squeaking. Little Miss Mama is busy nursing the babies, chowing down on everything we feed her with, and reorganizing her house. We congratulated Ghost on becoming a Daddy and he just looked at us like we were crazy. Perhaps we are but the boys sure got a kick out of it.

I'm betting half of you are trying to figure out why I titled my post "we have kittens" when I'm obviously writing about rats. Well.... I was bored the other day and Carson and I did a little research on pregnant rats and rat babies. We learned that a baby rats are called kittens. Isn't that funny? What irony for the rats. We need to wait a few weeks to name our new little ones and I can't wait to find out what namesakes Carson and Elias give our furry friends.


*******Post written on December 18th and pictures added December 26th*******

I want the GREEN one please!

Today was our big date with Dr. Ortho Surgeon for Eli's broken foot. The staff at the ortho clinic was simply amazing and I can't say enough wonderful things about them. They truly made the experience fun for Eli instead of intimidating and scary. Hooray for awesome medical teams!! Elias' x-rays didn't look any different and he is having increased point tenderness over his fracture. This is most likely caused by the little monkey thinking he can run (awkwardly) and attempt to jump on his bed again!!! After partaking in such bad behaviors, Eli will crawl over to us, whine about how badly his foot hurts, and then explain how he has to crawl and/or be carried everywhere because of his broken bone. Too bad restraints are not allowed outside of the medical establishment for rambuncious three-and-a-half year olds!!

Dr. Ortho Surgeon ordered a cast up to the knee for the next four weeks. Elias said "okay" and wanted to know right away where the casting room was. He picked out his favorite color which happens to be a bright shade of spring green. Then when the casting started he wanted to know what the man was doing and why EXACTLY! He kept asking where his old shoe went and why his foot had to stay still. It was comical but then the cast was finished and Eli made a poor attempt at walking. He became very upset that walking was so difficult with his new attachment and wanted it off. Thankfully things have gotten easier on the walking front throughout the night and he is hobbling along fairly well. I'm sure he'll be leaping off his bed in no time once again!!

No more monkeys jumping OFF the bed!

We had a friendly jaunt to the ED this morning with Elias. Last night he decided to be his usual crazy self and bounce around the room like a nut. During a brief moment of insanity he stood on the front of his firetruck toddler bed which stands about 16" off the floor and jumped off towards his toy bin. This of course ended in injury since Elias has such exceptional balancing skills. Carson started calling for Daddy and Eli was crying but not too badly. He limped the rest of the evening but there was no swelling, bruising, or point tenderness noted. Only silly limping and poor weight bearing. We chose to wait until the morning to see if his gait improved before rushing off to the ED but this morning came and Eli was still hobbling along and saying "Ow, ow, ouchie Mommy!".

The doc at the ED didn't think it was broken for all the reasons we didn't think it was broken but ordered a series of x-rays to make sure. Unfortunately for Elias, he fractured his third metatarsal (the middle bone in your foot). They gave him a Reese shoe to wear which is basically a soft walking shoe along with PRN Tylenol/Motrin orders and a date with an orthopedic surgeon for Thursday. He hates his new shoe and wants to crawl or be carried on and off. We'll see how that lasts.

Elias in the ED after finishing a green popsicle!

Christmasy

1.Wrapping paper or gift bags?
I'm a wrapper complete with ribbon, bows, silver, and gold.

2.Real tree or Artificial?
Artificial trees for this family only due to the rugrats and their asthma and me not loving pine needles all over the floor.

3.When do you put up the tree?
Within three days after Thanksgiving. Al and the boys surprised me this year and decorated the entire house on Sunday while I was at work. It is gorgeous!

4.When do you take the tree down?
After Christmas and hopefully before New Years. Depends on my energy level.

5.Do you like eggnog?
I love eggnog and so do the boys. Al could care less about the delectable drink.

6.Favorite gift received as a child?
Santa wrapped the garage door and left a giant trampoline in our garage and my little sister and I jumped on it all day long in the garage! That tramp was used until the springs fell off in warm weather and cold.

7.Hardest person to buy for?
The boys because I want to get them so many wonderful things but also only want to buy them things they will truly enjoy.

8. Easiest person to buy for?
Al. Pretty much anything makes him happy as long as you stick to his main brands.

9.Do you have a nativity scene?
Sure do. My aunt bought it for me and now the boys help me put it up every year. It is a Precious Moments nativity scene.

10.Mail or email Christmas cards?
Mail them and then use the digital image of my creation as my e-mail signature for the Christmas season.

11.Worst Christmas gift you ever received?
A barbie doll when I was 14 years old. I always hated Barbies anyways but come on, 14 years old?

12.Favorite Christmas Movie?
Rudolph the Red Nosed Reindeer

13.When do you start shopping for Christmas?
I find some little things throughout the year that are sentimental items or really good deals then do the bulk of my shopping in December.

14.Have you ever recycled a Christmas present?
White Elephant party gifts have certainly circulated throughout the years.

15.Favorite thing to eat at Christmas?
Our traditional cinnamon rolls for breakfast and my mom's famous cheeseball.

16.Lights on the tree?
We have all white this year.

17.Favorite Christmas song?
Jingle Bells, Rudolph, I like them all

18.Travel at Christmas or stay home?
Usually stay at home but if work gives us the opportunity we head down to Tennessee.

19.Can you name all of Santa’s reindeer’s?
Of course, when I was in 2nd or 3rd grade. I need to touch up on that trivia for the boys.

20.Angel on the tree top or a star?
Angels definitely.

21.Open the presents Christmas Eve or morning?
One gift on Christmas Eve which is always new jammies for everyone. Then you wear them to bed and wake up Christmas morning to open up everything.

22.Most annoying thing about this time of the year?
The crazy busyness of it all.

23.Favorite ornament theme or color?
My favorite ornament is the Christmas spider. The story is beautiful and although spiders give me the creepy crawlies this ornament holds special value to me. (I'll post the story in a few days)

24.Favorite for Christmas dinner? Ham with all the trimmings.

25.What do you want for Christmas this year? Healthy kids, happy family, friends to share memories with, oh.... and a pair of Danskos for work would be nice too.

Marshmallow

We welcomed a new member to our family this morning as well as a Christmas tradition. My mother brought over the Elf on the Shelf and the holiday fun began. I opened the box while the boys were sleeping and carefully removed the little cloth and plastic elf along with the hardback book filled with the magical story of the elf. After breakfast we all sat down on the couch and I told the boys I had a surprise for them. The four of us squeezed onto the love seat (because why on Earth would we sit on the perfectly good couch?) and fell into the story of Santa's helper who was coming to live with us for Christmas. The elf would watch over the boys and their behavior to see the naughty and nice things they were doing until Christmas Eve. The boys could tell him what gifts they wanted from the Big Man and he would let Santa know. Each night the elf would fly back to the North Pole and report back to Santa all of the things he saw and heard and Santa would decide on Christmas Eve what things they got out of his red sac.

There were three things the boys had to do though.

1.) Never touch the elf. He would loose all of his magic and not be able to fly back to Santa!

2.) Find the new hiding place where the elf was residing each day when they woke up.

3.) Give the elf a name so he could become a part of the family.

Al and I were sure the boys would have no trouble with #2 and #3 but that tricky #1 was going to be tough for our 3 and 5 year olds. We shall see how they do but I'm sure it will be fun no matter how it goes.

Carson and Elias were thrilled to have a new game as well as a magical elf straight from Santa's toyshop living with us. They kept whispering back in forth that them better be good so they would get their trains and Lego cities and tool sets. It was fun sitting back and taking in their childhood imaginations. Back and forth they went trying to pick the perfect name for red felted friend.

Would it be Macy? "No, that was already the dog's name, " shouted Carson.

What about Snow? "No, no, no," said Elias...."the elf wasn't white enough!!"

Finally they looked down into their hot chocolate mugs and Carson said, "What about Marshmallow?". Elias loved the name and they both grinned from ear to ear. They ran over to me and said, "Look Mommy, his name is Marshmallow and he knows Santa!!". Can you get any sweeter than that?

I've been Tagged!

Michelle tagged me and I'm just a little bit late on responding but here goes....

1.) I can play the piano and viola. I had piano lessons for 12 years of my childhood and am starting to teach Carson some basics. Viola was an interesting avenue that began in 5th grade and abruptly ended at the end of 8th grade when I realized I didn't want to be in high school orchestra. I still have my viola though.

2.) Al is frequently entertained by my sleep talking. My parents say that I started chatting away in my dreams at a young age and I've never stopped. Sometimes you can even get me to incoherently answer questions while I'm sleeping. How odd is that?

3.) Nursing is the only profession I can see myself in for the rest of my life. I absolutely love constantly learning new things, meeting new people, and taking on a variety of challenges every day at work. Who wouldn't love the opportunity to be involved with a family and entrusted with their most precious gifts?

4.) Blue is my favorite color. Absolutely any shade of blue will work. The color of a gorgeous Ohio fall sky is one of the best. The hue of Carson's eyes get me every time. But wearing smurf (aka royal) blue scrub pants to work everyday does get a little old.

5.) I am adopted. For the first 7 months and 1 day of my life I lived in foster care until my wonderful parents finally got me. I am truly blessed to be adopted and couldn't ask for better parents. Adoption is an incredible gift.

6.) I hold the high jump record at my high school. My mom says that she still doesn't know how I was able to get my booty up 5'4" over the bar. Somehow I did but those days are long gone!

7.) College football is an addiction of mine. I follow the season from pre-season until the bowl games and love every second. Of course The Ohio State Buckeyes will always be my team but I enjoy all the games, highlights, recaps, and polls. ESPN is a regular on our tv throughout the fall and I can't get enough.

Since pretty much everyone has been tagged already due to my great ability to procrastinate, I will leave it open to anyone who wants to let me in on your life/personality. Just leave a comment on the page so I can go visit your 7 things and learn a bit!

Voting Day

Today we packed the boys up and drove over to our polling place to do our civic duty and teach the boys about voting. Carson has been very interested in the election process during the past few months and Eli pretty much just reiterates whatever comes out of Carson's mouth. They were nonetheless excited to go help mommy and daddy vote (the promise of Starbucks after voting helped a little bit too!). We all dressed in red shirts and waited for only about 40 minutes for the entire process. Eli stayed with me and Carson with Al. Eli started signing Old MacDonald while I was voting and attempting to push my touch screen computer screen. I told him that he was only 3 years old and it would be a decade and a half before he could do it for real. Carson was very well behaved and really observed what all of the voters were doing. The nice polling lady even gave each boy their very own voting sticker when we were done.

After the voting commenced and Al and I gathered up the rugrats for a Starbucks run, we ran to the park with my mom to meet Aunt YaYa for lunch. The boys ran and played and jumped all over everything! All of the voting seemed to bottle up a ton of energy in 3 and 5 year old boys. Thankfully everyone had a nice nap so we could watch the election results come in. Unfortunately our guy didn't win the election but we were able to teach Carson and Eli about voting and participating in your country's electoral process.

Trick or Treat!

The boys had a Halloween night full of excitement this year. Carson dressed up as Optimus Prime the leader of the Autobots in the Transformers (can you tell I'm the mom of a 5 year old boy?) and Eli as Mickey Mouse the Witch/Skeleton. Carson knew he wanted to be a Transformer for months but Eli was a bit shy about Halloween in general this year. He watched a Mickey Mouse Clubhouse DVD where Minnie Mouse dressed up as a witch and fell in love with the character. We tried and tried to convince him that it was not okay to be Minnie Mouse the witch for Halloween but he had decided. Finally about two weeks before trick-or-treat, Eli decided it would be okay if he was Mickey Mouse the witch instead of Minnie.

Thank God.

So, we glued Mickey ears on to a witch hat and Eli said he wanted to wear this skeleton outfit for the body. Too bad it was my mother's dog's costume!! LOL....we let him wear it anyway and he had a blast.

Carson absolutely embraced his character and truly was Optimus Prime the entire day. He certainly is five and all boy! Although I wouldn't pick red and blue spandex as an everyday attire choice. His skinny little butt and long legs made him look more like a patriotic Popsicle than a lean, mean Transformer. It was a size 8 costume though :)

My parents took them around the neighborhood to gather up all the goodies they could fit inside their pumpkins before heading home to bounce off the walls a few hours past bedtime. I had to work until 8 and Al had clinical until 11pm so we both missed our little candy goblins. Thank goodness both Eli and Carson never stop talking and told us over and over again about their "totally awesome" night.

Three whole days off!

The past three days have been busy, relaxing, rewarding, and exhausting all at the same time. I finally had a few days off in a row to spend with my family and it was amazing. We baked cookies for Halloween together tonight and then had a hot chocolate and sugar cookie party in bed. Carson and Elias thought it was the best thing since Christmas morning. We were able to enjoy time together with extended family including aunts, grandparents, and great-grandparents. We've had fires in the brisk fall evenings and early morning dates to Starbucks for coffee and carmel apple spice.

Fall is my favorite season and this week the weather finally decided to change just in time for me to celebrate with Al, Carson, and Elias. Cool mornings below 30 and brisk blue skies in the afternoons against the leaves can't be beat. Tomorrow it's time to head back to work for another four day stretch but I've missed the babies and families there too. 5:00am is going to certainly come e-a-r-l-y though!

Family Pictures

We had extended family pictures taken at a local park this evening by one of my sister's co-workers. She did an excellent job for an amateur photographer getting her start. There were three dogs, two kids, and three sets of adults. Talk about a bunch to handle in a park after 6pm! We were bad and forgot to bring Macy for the pictures so Petey, Ralph, and Baby (my parents and sisters dogs) are all in the shots but our beloved woof is not. Don't worry, my mother let me have it for forgetting too! Here are a couple of shots from our modeling shoot (click to see an enlarged view). Enjoy the footage. I think they turned out pretty cute myself.

Adaptive Physical Medicine

Elias had his appt for adaptive phys med the last week of September. Dr. Batley was wonderful and the 2 hours we were there being assessed and evaluated were very well spent. Elias was weighed and measured in almost every since angle imaginable. His growth is awesome although he is still quite skinny for his height (about 3rd percentile in the weight-for-length category). He is 40.5" tall and 32 lbs. Such a long, long way from the micropreemie of years past. They tested his reflexes, walking, running, sitting, standing, etc. Elias thought most of the appt was playtime and couldn't believe that he was actually able to take his shoes off and RUN in a doctor's office WITHOUT shoes on!! The only portion of his assessment that involved a few moans and groans was the stretching and tone checking.

Overall things look fairly good. Dr. Batley found many soft signs of cerebral palsy. Elias has clonus more in his left leg than his right. His left leg is also tighter than his right and tends to drag when he gets really tired. His tone is hypertonic throughout with hypotonia in his trunk. Although his ankles are loose, Elias tends to toe walk about 80% of the time and that is a large red flag for them. Dr. Batley finally was able to tell us why Eli fall randomly and unexpected throughout the day as well. His IT Bands in his legs are tight. These are extremely hard to stretch but we have been trained to do it properly and need to stretch him 3 times a day for the next 4 months. When the IT band is tight is causes the leg to give out suddenly when it is tired (which Eli's legs get tired as the day goes on). This explains why our little splats so much and then bounces right back up again.

We are not going to get AFOs or DFOs (ankle or leg braces) at this time. Dr. Batley said that for braces to be beneficial for Elias we would have to brace all the way up to his hips. Bracing to that extent would do more harm than good to his mobility so we will hold off for now. She said that if his falling gets worse and he is injuring himself or needing stitches for falls, we will reconsider bracing at that time.

Dr. Bately held off on giving Elias an "official" diagnosis of spastic hemiplegia cerebral palsy at this visit. She said he has so many soft signs including the ones mentioned above and his aspiration of liquids, low mouth tone, and fine motor delay. We will see her again in January to reassess his progress but his treatment and therapy will not change regardless of diagnosis. He is still our amazing Elias who is a spunky, rambuncious, crazy three year old that runs us WILD every day.

September Slacker

Okay....so I've been an overachiever at slacking this past month. I cannot believe my last post was from August 20th. ACCKKK! Our world has been organized chaos in the past few weeks so I will give a few bullet points on each of us and after our vacation to TN next week, I will try to elaborate on the joys September brought our family.

Al -

• Spent a great month studying and spending time with the boys


• Wrapped up his 2nd semester with ANOTHER 4.0 GPA in his nursing program


• Started running more religiously again

Kellie (me!) -

• Working between 48-60 hours a week but absolutely loving my job


• Enjoying every free minute I spend with my boys and Al


• Finally went and had my hair cut after 9 long weeks

Carson -

• Started Kindergarten (wait until you see the pics...they are priceless)


• Doing amazing well and has the best teacher imaginable for Carson


• Has his ups and downs with his OCD/mania/ADHD/anxiety but the ups are outweighing the downs much more right now which is wonderful for him as well as us

Carson's 1st day of Kindergarten

Elias -

• Started his new preschool program and is getting used to a new environment/therapists


• Is growing TALL despite GERD and feeding issues flaring up (31.5lbs and 40.5" )


• Finally had his phys med apt that went fairly well with NO official CP diagnosis as of yet but they will re-examine in January (spastic hemiplegia - left sided) but overall good apt with more details in another post

Elias' 1st day of preschool (this year)

So.....those are just a teeny weeny glimpse into the things that have been going on in our household during the month of September. We've also had our usual couple of ED visits for respiratory distress, pneumonias, and overall crazy boy mishaps. Everyone is still running around like wild men so we aren't too concerned. The boys continue to astound us with their witty humor and never ended new skills. This is an age of wonderment and experiment and Al and I are loving every minute.

Camper Boy

While Elias and I were out on our special date Carson has been out at the campground with my parents having a fantastic time. Elias went out and joined them for one night since he still deals with some separation anxiety issues and gets very homesick and out of routine if he is not in his bed for more than one night. Carson has been living it up at Dillon Dam. Gigi and Bobpop have let him ride his scooter all over the campground chasing them and small woodland creatures. He has learned to play t-ball and is going to be our all star south paw. When not scootering (is that actually a verb?) around or knocking back home runs, the C-man has built some incredible construction sites with his diggers, cranes, and 18 wheelers. He is the embodiment of a boy and is eating up every spare minute of free time before Kindergarten starts on 8/28. What a huge milestone that will be.

The "Bee" Store

Elias and I went on a Mommy-Son date tonight. Carson is camping with my parents and Al was at class so we had some special one-on-one time. I asked him where the two of us should go to dinner and his reply was, "The bee store Mom!". When I looked at him quizzically he said, "You know, APPLEBEES!!!". I couldn't help but laugh. If you know Eli in person you know he is an incredibly enthusiastic kiddo that is full of expressions. His entire body speaks when he is talking, walking, or playing. Anyone around him knows his mood and intent right off the bat and this time he was completely conveying the "Mom, how could you NOT know the exact restaurant I was talking about when I said the bee store even though we never eat there and I called it by a completely different name" expression. Three years old is fun (and exhausting at the same time!).



So, the two of us headed off to the bee store for dinner. Elias toted along his new 18 wheeler truck from Target and his little Curious George monkey stuffed animal. He ordered a green grasshopper for his drink and grilled chicken with applesauce for dinner. Typical preschooler. I opted for the smaller portion of orange chicken and a diet coke. The various wall decorations thoroughly entertained us until dinner was served along with "honk-honks" accompanying his 18 wheeler play. He hardly ate due to his *$@#** GERD that has been driving him (and us) batty the past two months but a little extra tube fed Peptamen Jr. solved that tonight.




After dinner he wanted to head over to Barnes and Noble to look at books and play with the Thomas the Train sets. We had a blast and Elias was the only kid in the whole store. I found two drawing books to surprise the boys with for our trip to TN the first week of October. Eli didn't notice because he was too enthralled in the trains and then the cupcake decorating book he discovered. When he started yawning I scooped him up and we headed home for bath. Bathtime was a blast and Eli stayed in the bubbles until his fingers and toes were wrinkled up prunes. After getting dried off, new jammies on, and a bedtime story it was time for tube feeding, meds, and bed. Our date was wonderful and it was nice to have some individual time with Elias since Carson has gotten the last two special date nights.

Another ED visit

Elias was in the ED for yet another episode of respiratory distress last night. I came home after a 12 hour shift and he had been wheezing all day even on q4hr Albuterol treatments. He had a 100.4-101.2 degree fever on and off and was getting his characteristic retractions and nasty cough. Throughout dinner he coughed but remained stable but within 30-40 minutes after eating he was struggling to catch his breath so we headed back down to work to the ED.

They took us right back after hearing Elias hacking while coming through the automatic doors. Thankfully his sats weren't terrible on room air at 91-92% but that is not where a 3 year old child should be at resting. He earned x-rays, Decadron, and two more breathing treatments before I convinced the attending that I was capable of taking him home since this was probably the twentieth time we have dealt with the same situation. The attending agreed since aspiration pneumonia was ruled out and we were home before 1:30am. Good thing too.....I had another 12 hour shift starting at 6:45 that morning!

Mark one more compromise down for Eli's slowly healing BPD, asthmatic, chronic aspiration lungs. Caught up by age 2? Funny.

We Sprung a Leak!

For the first time in our entire MIC-Key button using history, Elias' button sprung a leak today!! He went to bed last night with it looking fine and this morning when he walked into our room his button was sticking out way too far. I tugged on it a bit and there was almost no resistance from the balloon inside his stomach. Carson was carefully watching our whole interaction as he is known to do so intently. I asked him to run downstairs and grab a 10ml syringe and a bottle of sterile water and bring it back upstairs. He was happy to help and was back within a few minutes with the right stuff. I checked the water level in Eli's balloon which should have been 5mls and there was only 0.5mls left!! No wonder his button was loose and about to fall out. There was nothing holding it inside his stomach.

Elias helped me take it out and fill it with 5mls of sterile water to check for any leaks. The balloon looked intact and the three of us couldn't find any water leaking from anywhere. Since we only have one spare button and one spare g-tube available at all times, the old button was going back in. I put 5mls of sterile water back in the balloon, checked placement, and that was that. When we came home from our day trip Eli's button was loose again and when I checked the balloon there was only 1ml of water left. Al grabbed the new button kit and we replaced as Elias calls it, "his old stinky button" with a "new shiny, clean button". So, Eli is the proud owner of a new 14Fr 1.7cm MIC-Key g-button which has already been used to feed him 1.5 cans of Peptamen Jr. since his GERD is driving him nuts and he isn't eating much right now.

Elias with no MIC-Key button


Elias with a new MIC-key button

This week has been fun from strep throat with him in the very beginning of the week (third time since the end of May) to questions about mitochondrial disorder again because they never received the official results of his muscle biopsy to knocking his teeth loose on Monday to needing a new referral to Physical Adaptive Medicine to get braces for his hypotonic cerebral palsy and falling all the time. It has been a hard week. But this smile makes each day brighter and his laughter is infectious. He is certainly one tough cookie.