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.

Down on Young's Farm

Today the boys and I met one of my best friends at Young's Jersey Dairy Farm for some good food and fun. We hadn't seen Mandy for almost six months and we were well overdue for a visit. After the long drive and hearing Carson and Elias yell, "Honk! Honk!" at every 18 wheeler we passed on the freeway, we sat down to a scrumptious meal at the restaurant on the farm. I splurged and ordered a 1/2 slab of ribs and they were worth every messy bite. The boys both ate pancakes and couldn't stop looking at all of the John Deer tractor items displayed around the store. They were in heaven.



After stuffing ourselves we headed over to the animals. The boys wanted to pretend to drive the old tractors first so we bypassed the poor hungry goats for some farmer time. They had a blast. The farm has a little cow statue for kids to play on so Carson took on the role of bull rider and Elias soon followed. Eli then got scared and wanted down off the "stupid cow". Please remind me to thank Carson for teaching Elias that lovely word!



Finally we made it to the goats. The boys both received a dime each to buy food. They had fun putting it in the machine and getting out a handful of food. The goats (who were certainly not starving) gobbled up the food and then kept following the boys up and down the fence line looking for more handouts. Elias tried kissing them on the lips. Carson would run up to them, pet them on the head quickly, then run away even more quickly. It was cute. We had to visit the pigs, turkey, ducks, hens, and cows in the barn in addition to the overfed goats. Carson just repeated, "Mom, they don't smell too bad this time".



The day wrapped up with a trip to see Mandy's new house which was wonderful. Then off to her parents' farm to play on their playground. Carson and Elias begged Mandy for a ride on the Gator around the farm and to go see the piggies. Mandy happily obliged and we trekked our way around the fields having a fantastic ride. The pigs were excited to see us but mad that we didn't bring food along too. Unfortunately we had to leave to drive home and have nap time but the trip was perfect. The only thing missing was Al (he was at clinical for the day).


(no, Carson didn't get to actually drive the Gator)

Thank You Godiva

Today was my day off. I wanted a quiet, relaxing, fun-filled day with my three boys. Sometimes we don't get what we want.

The morning started out with Carson and Elias waking up wired. If I hadn't known any better I would have sworn they had stolen some of Al and my Starbucks Espresso Roast. During one of their more than rambuncious wrestling matching in the family room, Elias accidentally nailed his teeth into the top of Carson's head. This in turn knocked his left front and side tooth loose producing lots of blood. Carson also started screaming like he was dying even though there was hardly a bump on his head. Elias sat there, looked at me, and said, "Mommy, there is blood on my face. Can you get a towel?". I guess not feeling pain normally has it's moments.

Off we go to the dentist to be told that there is nothing they can do since they are baby teeth. We are to watch them for abscesses and drainage around the gum line and bring him back in if either occur. The teeth might loose color and die if there was nerve damage but since they are baby teeth they won't do anything to save them. Eli's mouth is a bit swollen and bruised but he's happy about the soft diet for a few days.

The boys continued to be wild and crazy (as most 3 and 5 year old boys are) so we tried to distract them with a trip to the store to pick up craft supplies for later. They found many treasures and I can't wait to start creating with them. Pictures of their masterpieces will follow in the coming weeks....

Al left for school around 5 and I swear that demons possessed my children. I could not get them to sit still or listen for anything. Playing outside didn't wear them out. Distractions weren't working. Time outs were laughable. It was "penis head" this and "booger butt" that, followed by boat loads of unstoppable laughter and running in circles. I was at my wits end when The Tigger Movie and some snacks finally saved the day.




Once the munchkins were f-i-n-a-l-l-y worn out, exhausted, droopy eyed, and in jammies, I tucked them in and kissed them goodnight. Then my defeated mommy self walked downstairs and cracked open my savior -- a brand new clearance box of Godiva truffles. I needed a perfect treat to end an imperfect day. And what a treat it was. Thankfully I only ate one truffle and carted the remaining 35 decadent pieces off to work in the morning so 18 nurses could divulge in Godiva calories with me. :)

Titletown, USA

It's about that time again....BUCKEYE FOOTBALL season!! ESPN has a short segment at the end of July looking for THE town in America that is deserving of being named Titletown, USA. The segment was all about The best city and our hometown heroes, The Ohio State Buckeyes!! We bleed scarlet and grey here and can't wait for the season to start. Check out the clip...

Titletown USA clip