Jeffrey Had a Loose Screw On His Birthday

We all have a few loose screws, right? Well, Jeffrey LITERALLY had a screw loose. On the morning of his birthday, knowing we still had to go to my mom's to make up baskets before the beef and beer, I was rushing to get both boys bathed and pincare over with. Well, they were both bathed successfully. Of course, Jeffrey was screaming as usual, in the shower. After his shower, he's on my bed and I'm starting to dry his fixator off. I was about to wrap him with the gauze when I heard chink, chink. Hmmm..what could that be? I wondered. Upon further inspection of his bottom pinsites I discovered a screw that was out of place. The arch was totally detached from the bottom tibial pin.

If you look right in the middle of the pic you'll see the screw not attached

AAAHHHH! Panic set in but I didn't want Jeffrey to know I was freaking out on the inside. I tried to remain calm for his sake. I called, texted, picture texted Dr. Standard. I then called Jamie at work to tell him of our morning. We talked about driving down to Baltimore right away. I was afraid to even move Jeff and he was still naked and unwrapped. Luckily, Dr. Standard called me back within 10 minutes. (Meanwhile, Jack is roaming around the house doing who-knows-what. He comes back into the bedroom with a tampon and the wrapper from my purse. He was flying it like it was an airplane. Jeff then wanted a stringy thing. Uh...NO!!! "Jack, give that to me, it's not a toy!!" WAAAHHHHH!" Great! now 2 crying kids! Awesome) I attempted to listen very carefully to Dr. Standard. He asked if I had a 10 wrench and I just happened to have one. Whew. So, I set to work putting the screw back in place and tightening it.

Screwing it back in. Of course I had to take pics!

Looks like crisis was avoided that morning. Then off to mom's we went for a great rest of our birthday day. Craziness!

Best Birthday Ever!

"Amazing!" is one word I could use to sum up "A Night for Jeffrey". There were over 200 people at Wedgwood Country Club to support our family. We ate yummy food, enjoyed the company of family and friends, won baskets of prizes, danced, and of course drank.

When my sister first mentioned the idea of having a fundraiser for us, Jamie and I weren't sure what we thought. It was a great idea because we knew we'd need the money. We just didn't think our situation merited donations. Now, after the night is all over we don't have to worry about being out of work for 6 months, about wheelchair bills, copays, buying gauze, qtips, tape, saline, paying the mortgage and for our stay in Baltimore,...etc.

Talk about a show of love and selfless giving!! We've received donations from so many people including complete strangers who may have seen it in the paper or who heard it from a friend.

I know that "Thank You" doesn't even begin to express our gratitude but it's a start! My hope is to be able to carry that night with me always and be able to pay it forward to anyone else in need in any way. Thank you, thank you, thank you!!!

Click here to see posted pics from the night
If you have any pictures, please e-mail them to me. I don't have many pics. I'd love to add more!

Holy Baskets, Batman!

Friday night, wait it was Saturday morning technically,  I pulled away from my mom's house at 1am being so extra grateful for all the love and support people are giving us!!! Family, friends and total strangers included!!!
My sister Jen, my mom, Aunt Nancy and my cousin Kristen all hung out to group together, arrange, label, and type up the contents of all the baskets and items donated. My poor and wonderful mother volunteered not only her time but her house for our basket nights. We started building baskets just in the living room, then it seeped into the dining room, creeped into the kitchen and last night it wrapped around into the recroom :) Sorry Momma, love you :)

Sunday night was centerpiece painting and more basket arranging night. We currently have over 60 baskets to auction off for the basket auction.
Plus, we have bigger ticket items like jewelry, a shore house for the weekend, Phillies tickets for 2010-2011 season..and more :)
I'm really excited!!! I can't believe how quickly October 22nd "A Night for Jeffrey" has gotten here. Never did I realize what a huge outpouring of love and support would come out of it. Thank you all so much!!!
Much love!
These guys busted their butts on many late nights!!! Thanks!

Kristen and Aunt Nancy: the basket experts!

My big sister, Jen making labels

The basket crew, night 1

Reflections of the last day being a 3 year old

As I cuddled with my boy tonight on his last night of being a 3 year old, I couldn't help but tear up.
We talked about our day and....okay, wipe the tear drip now, crap! Okay, composed!... We talked about our day today and our favorite part of it. His was reading the "H is for Homerun" book just before bed. Mine was when we were waiting in the Dr's office for about 2 hours just being silly and giggling. That hasn't been happening in a while and it felt so good to be enjoying that goofiness with him again! Then he changed his favorite part of the day to be the same as mine :)
We talked about how we met a 7 week old baby, Brayden, and his parents. They were in the room next to ours and Dr. Standard asked if we'd mind talking with them. I was so excited to jump at the chance to tell someone else that their child will be awesome! He'll play and be a better, stronger kid because of his little leg :) Jeffrey was "rolling all over the floor" proof that not even 9 screws in his leg could slow a boy down. Jeff adored that baby. He kept touching his tootsie toes and wanted to pick out his toe fuzzies. That was where mom and I drew the line. hehe
I gave her all of my info: e-mail, facebook name, etc. I hope she is able to take away some sort of calmness knowing that as shocking and upsetting as it is to hear that your child's leg might be amputated elsewhere, her son is now in great hands at the Rubin Institute. It takes quite a bit of thinking, reasoning and a lot of support to come to the optimistic realization that "It's just a bone." It could be a whole lot worse. When I told her about this blog, she said she has one too. I'm anxious to read it!
What else happened today...? Hmmmm...oh!!! We did our last turn!!!!!!!!!!!!!!!!

We've made roughly 6.5 cm of bone in his right femur. It wasn't the most length we had hoped to get, but it's a whole heck of a lot more than what we started with! The reason we decided to lock down is I think Jeffrey's body was trying to tell us, he's done. At PT this morning in Baltimore, our therapist said that his hip extension was at -45. That's not good! He can't straighten his leg at his hip. We can and that would be considered neutral. If you stood up straight and lifted your right leg 45 degrees forward that is basically where Jeff's leg is stuck and that tendon in his hip is tight. It hurts to straighten. To compensate he arches his back and walks hunched over. We have to do more belly time. Not only is his hip an issue but his distracter bar was starting to rise up. (I'll show it in the picture so you have a clue what I'm talking about.)

The therapist said that sometimes if there is too much force being applied by lengthening, the bar could bow or pop out causing us to lose that tension where he is stretching. She said sometimes it's okay and sometimes it could be a huge problem. I'm going to err on the side of caution on this one and say, "Okay, we're done!"

Passed the time reading this book then using it as a ramp for monster trucks :p

All in all, it was an eventful day. Now, the boys are asleep, it's 8:15 and mom is going to....clean! haha Well, finish blogging of course and then clean. We are excited to have guests coming from Syracuse University. Cousin Abbey and her friend Jeff are coming to stay over after "A Night for Jeffrey". We can't wait to see them!
I guess I should also alter his dressy swooshy pants or his dressy sweatpants for tomorrow night. haha Poor kid!
Tomorrow is my big boy's big 4!!!!!!

Dialogue with Jeffrey

All these people get reality tv shows. Why not follow around a family that's "normal" ...well that's debatable, "normal" meaning with no special fame? I think our life is rather entertaining!!! Please, do enjoy!

Getting ready for his nap:
Jeff: "When are you going to cover me up? Oh, I mean, can you please rub my leg?"


Lying in bed:
Jeff: "Look, mom, I turned over on my side. Now, my butt is facing you. Oh, and my back. Can you please scratch it? I really appreciate that!"


Cuddling in bed:
Jeff: "Mom, can you rub my leg?"
*Mom rubs leg under covers*
Jeff: "Not that leg, mom. My fixator leg."
Mom: "Right. Oops."

Sitting at the breakfast table:
Jeff:"Mom, it's on fire, my pinsites! You're gonna have to call the fire apartment to cool it off!"

Pre-breakfast convo:
Mom: "What would you like for breakfast, boys?"
Jeff: "Pancakes!"
Mom: "Well, I have to make them."
Jeff:"I'm okay with that!"

*Jeff sticking the fork into this thigh at the dinner table*
Dad: "Stop poking yourself with that fork. You don't need any more holes in your legs!"

Mom: "Jeffrey, I'm going to make you a dentist appointment. You need to start going."
Jeff: "Why?"
Mom: "Well, they clean your teeth and make sure they stay healthy."
Jeff: "Why they gonna clean my teeth? They aren't dirty."

At the table during lunch:
Jeff: " Can you please rub my leg?"
Mom: "If your leg hurts at the table, you can rub it. I am eating."
Jeff: "You can use your right hand to rub since you're not using it to eat."

Driving in the car after PT:
Jeff: "Mom, where are we?"
Mom: " In Washington Township."
Jeff: "Hey, mom! That's where the president lives!"
(When we were in Baltimore we talked about maybe taking a train down to Washington D.C. to see where the president lives. Boy this kid remembers a lot!)

While listening to the radio in the car:
Mom: "Hey, Jeffrey! Do you hear the electric guitar playing in this song?"
Jeff: "No one is playing it."
Mom: "What do you mean? I know you can't see the artist, but someone is playing it"
Jeff: "If it's 'electric' that means it plays by itself, like my Thomas trains."
*Where does he come up with this stuff? I love it!*

Driving in the car snacking on animal crackers:
Jack: *sitting silently squirreling away cookies in his cheeks*
Mom:" Chew, chew Jack E."
Jeffrey: "I don't see a train."
Mom: "What, Jeff?"
Jeffrey: "You said, choo-choo and I don't see a train."
Mom: "OOOOOh. No, not choo-choo. I told Jack to chew and I said it two times. haha"

Waiting with Jeffrey at our clinic appointment last week trying to play Game Cube:
Mom: "Jeff, it's not working. It says, "The disk can't be read."
Jeff: "Let me see it."
I took the cd out and showed him it may have had scratches.
Jeff looking confused: "It's not RED!"
haha

At Walmart: We passed the electronics section where I was going to buy printer ink. We were at the bread section.
Mom: " Aw! I forgot to get ink. Oh well."
Jeff: "Let's go get it."
Mom: "I don't feel like walking all the way back there."
Jeff: "Mom, you really could use the exercise, ya know."
OUCH!!!!

Pinsites Revealed

Well, if you've been wondering what's lurking underneath the gauze on Jeffrey's fixator, wonder no more! WARNING: Quite gross but real!

Pinsites revealed!
click above to see pics^

The Good with the Bad

We had our 2 week clinic visit on Monday, the 7th....what to say, what to say...
Perhaps these pictures can illustrate how the doctor's visit went...

6 centimeters of growth so far!!!!

Okay, so let's just say Jeffrey was not a happy camper. He's been crying and anxious at the mention of a shower or pincare. He's also been crying going into therapy at home.
We mentioned this to Dr. Standard and his PA. One idea was to try the diazepam (med similar to valium). We were a little leery about giving a child valium, but we decided to try it. It has really helped him be his silly self. He still cries loudly during showers and pincare, but he's able to calm himself down more easily.
On a knee flexion note, aka "the good', he got 70 degrees! Awesome!
However, "the bad" is that his hip extension is -35 degrees. He basically can't lay flat or stand up straight. He arches his back and bends at the hip when standing/walking or lying down. It's painful, but we got rid of the crying knee hangs in exchange for crying hip stretches. We have belly time and the bugger knows just how to compensate by twisting a little so it doesn't hurt him. When he does that though it doesn't stretch his hip.
So...good that we got 6cm growth. Good that we are estimating like 4 more weeks of turning. He have slowed down our turns from 3 a day to this week alternating 2, 3 turns. Next week all 3's. We are doing this in hopes that the bone will fill in and consolidate a little easier. Dr. Standard related it to pulling taffy, if you pull too fast and don't give it a chance, the taffy gets flimsy and thin. We don't want taffy bone.
Not good is the hip extension or lack thereof. Plus, not good that we had to start antibiotics AGAIN yesterday for the pinsite infection at his knee. It was red and warm to the touch. Ugh!
He continues to be losing weight. The good doc recommended letting him eat when he wants. We usually only let the kids snack once between lunch and breakfast. Now, anytime he mentions he could go for a snack, we suggest crackers with cheese, or pretzels, or animal crackers...eat, boy, eat.
To sum it up, our goal is to calm, straighten, lengthen, and fatten our big boy!

My Little Experiment

I am conducting an experiment for my own sanity and the safety of my children.
The moodiness, crankiness and whining can't be tolerated anymore.
So....I've decided to cut the tv and the DSi by a lot!
No more "wake up and cuddle in Mom and Dad's bed and watch tv while mom closes her eyes again."
Instead, mom gets her fat butt up and plays and eats breakfast early.
After a little knee hanging and Wii, we do....PINCARE!
If it's "horrible" and Jeffrey screams then no DS during exercises. He can cry and tell me how horrible it is, but if he screams and pushes me away, no DS.
So, we did pincare and... he got no DS. The exercises were actually better without it, though :)
*I started typing this mid-day...before Jeff's pre-PT meltdown! Let me explain...Since Jeffrey's surgery was in the summer he's been wearing shorts and I had altered them to have velcro or snaps down the side, all good. Now, the cold is setting in and he needed to wear pants. Monday was his first experience with pants and a fixator. Mom did not sew the pants on Sunday night like she thought she would. Instead,  she was on FB and doing who knows what. Come Monday all I had was a pair of khaki pants cut up the right side. I dressed Jeff after his shower and pincare. I slipped on his pants and he was not happy. Not only did I not secure the side but I did not hem them either. Sooo...I had to roll them up and safety pin the bottom and sides. WELL, let me tell you...this set him off! "I DON"T WANT TO WEAR THESE PANTS!!!! THEY'RE TOO BIG!!"  A crying fit ensued, a very loud crying fit. In unison with that, Jack refused to let me put his shoes on and he started crying. "Oh, dear Lord!" I thought to myself. We made it out the door with 2 screaming kids. We were a little late for PT, of course. We get there and Jeff had finally calmed himself down and started talking to me again. He continued to remind me of how he did not want to wear the pants. We are waiting for our therapist, she comes out and Jeffrey loses it! CRAP! "I want my mom! I don't want to go do ferapy" He starts hanging on me and then as if on cue, Jack starts in too! I reassure him and send him on his way, "Jeff, you'll do great. I'll be right here the whole time waiting. I'll see you soon." Poor kid!
So, day one of the experiment started out well, then I got selfish and wanted to shower while Jack was napping so I stuck on the "All About" video. TV! Bad move, mom.
In my defense, I really needed a shower. I honestly couldn't remember the last time I had showered. It's been raining and I hadn't left the house.

Well, here it is day 2 of less tv. I have to say, today was a better day all around. He did cry going into therapy, but it wasn't b/c he didn't like his pants. Mom actually hemmed and put velcro on his new red swooshy pants. (Too bad I hemmed them too short. You can only notice when he sits ;)

Tomorrow we have our PT appointment in Baltimore at 8am and our clinic visit at 9am. It is now 12:45am and I have my alarm set for 5 so we avoid most of the rush hour traffic we hit 2 weeks ago. Let's hope we hear some good news tomorrow!

I

HATE

pincare!!!!!!!

A Night for Jeffrey

When our big boy turns 4 on October 22nd there's gonna be a big blowout!!
Okay, so, it's not really a bday party, but we'll have cake, no worries :)
Our family and friends are organizing a Beef and Beer for us to help pay any medical costs and care costs we continue to incur while Jeff is adorned with a lovely piece of metal known as the external fixator.
My mom sent out a Facebook invite but if you are not on FB, you may not know.
The details are as follows:

A Night for Jeffrey

Beef and Beer on Friday, October 22, 2010 

Wedgewood Country Club

200 Hurffville Rd

Turnersville, NJ 08012

7:30-11:30 pm

Tickets $30 donation

 There will be a 50/50 and a Chinese Auction

If you are interested you can e-mail my mom, Sally Zbikowski, at szibby@verizon.net

If you are unable to attend but would like to make a donation, you can mail a check made out to "A Night For Jeffrey" to 

Gloucester County Federal Bank

301 Greentree Rd

Sewell, NJ 08080

Thank you so much in advance for your support and love :)

Do I have a newborn?

I lost count after the 7th time! We were woken up last night round the clock by mostly Jeffrey crying or needing his leg rubbed. Then Jack was like the grand finale crying earlier than usual to wake up. I got in and rubbed his back hoping that in some crazy twisted way he might actually go back to sleep. Woohoo, he did. Then...about 20 minutes later,  I felt monster trucks being driven on my face. Jeff's up and ready to watch tv.
So that was our night. Today Jeffrey spoke solely another language. Whine! Jeff whined all day long!  He cries at the drop of a hat, not just during pincare now. So...it's been fun! I feel bad b/c I know sometimes he's in pain and sometimes it's just pure drama.
Tomorrow, we have late PT, 3:00. We're going to attempt to go to Riverwinds to swim in the morning. Mom agreed to join us so it can be one on one. Wish us luck!