Letter to a fixator

Dear Fixator,
I know we've had a love/hate relationship over these last 5 months. We knew you'd be the right choice to help our strong boy grow.  We knew it wasn't going to be an easy process. But, like all challenges you've brought strength to all who have known you or known about you. You have helped our family grow stronger and closer by seeing how amazing a 3 year old can be when faced with tough times.
You've banged up quite a few things in our house and on our bodies, so it's clear you've made your mark.
Now, that you are no longer a part of Jeffrey's leg, literally, I think we can reconcile and appreciate all that you've done. Truce?
From this day forward, you will forever make sweet music as a set of wind chimes hanging in Jeffrey's room. This will be a reminder of the blessings you have bestowed on our family.
You will also be remembered every Christmas, as part of you will adorn our tree as a Christmas ornament for 2010.
We will see this fixator life again in a few years when one of your fixator friends takes us down the lengthening road once more.

Fixatorless :)

Peace out, fixator!

Love,
The Schwanti

I love my man!

I would be remiss if I didn't mention how great I've got it! I went back to work 2 weeks ago and it was a strange transition for both of us.
The man who lives with me, who wishes to receive no recognition so I won't mention any names, has been an awesome stay-at-home-dad for the past 2 weeks. I've come home to a clean house, laundered clothes, and a cooked meal. He has been busting his butt playing with the kids, doing pincare, physical therapy and keeping the house amazing!
He has completed more projects (finding the laundry room, cleaning out cabinets, finding the floor in our bedroom...etc) than I have in the summer months and my 3 months of family leave combined! So...since this person did not want any attention, I say thank you to the man on manternity who takes care of his family in all senses of the word! Love you!

Question Machines

Where have we been? Well, it's been busy around here. I do LOVE to keep up with the blog, however being back to work and busy at home cause me to fall asleep faster than usual.
Jamie and I have decided to rename our children, jointly. Their new name(s) are "WhoWhatWhenWhereWhy?" It's like a new game/hidden camera show they play. How many questions can we ask mom and dad before one of them literally explodes??
Jack and Jeffrey are fans specifically of the words "what" and "why".
I came close to losing it last night when Jeff was in the car with me. We had just gone to Walgreens to pick up Jack's meds (for his 1st official ear infection of the season) and Jeff wanted a lollipop. No problem, we get the meds, my debit card, the receipt and the lollipop. All Jeffrey cares about is holding his lollipop. I hand it to him and begin our drive home. I pull over about a minute later only to begin to freak out about not finding my debit card.
From the moment I slowed down, Jeff's questions began. "Why are we stoppin? What kind of lollipop is this? Why aren't we going home? Why did you stop the car? Where are we? Is this a shortcut?" My patience was long thrown out the window when I tried my hardest to quiet him down. "Jeffrey,...dear,...please stop asking me questions. I am trying to find my debit card."
"What's a dennit card? Why did you lose it?" GGGGGGGGGRRRRRRRRR!!!!!!!!!!

Merry Christmas

Guess who is getting an early Christmas present...give up? It's us!!!
Jeffrey had his clinic appointment in Baltimore on Monday at 8:30. After xrays and talking to the doc it looks like we will be scheduling surgery to get his fixator off on December 21st!!! How exciting!!! This came as sort of a surprise but a wishful thought in the back of my mind. I knew that some of his friends from the Hackerman-Patz House had been getting theirs off last week and this week so our time would be soon.
Here is the xray from Monday, the 29th:

Super cool regenerate bone. Gotta love technology!

Bein' silly. Check out that knee bend!!

What happens during the surgery is Jeffrey will go to sleep (sounds so peaceful, right?) and the doctor will take out the fixator screws. He will then drill a hole through the head of his femur and insert a rod. This is to help prevent a break in his femur since the bone is still quite pliable. He will be casted from hip to foot, probably. It may be a hard cast or a removable one. He'll wear that cast for 2-4 weeks and then begin physical therapy again. This operation requires one overnight stay so we'll be at Hackerman for a few nights and the hospital for one. This'll make for a very lazy Christmas break. Nice!

So, we keep taking our Flintstone bone building vitamins, drinking our chocolate milk, and trying to keep him from running and hopping. It's been a fun journey for momma being home. Now...the boys get to enjoy their daddy all day long :)

Jeffrey, my hero!

Hi Ho, Hi Ho...

My reign as stay-at-home-mom ends in 2 days :( I can't believe how those 3 months of family leave have flown by. I just keep kissing and hugging the boys. It's like I'm never going to see them again. But, really, when you think about it I'll spend about 9 hours at work when I'm used to spending that time with the kiddos. There were so many things I had planned to do on my "time off". HA! I was going to make cookie dough ahead of time to freeze, clean the garage, get Jeffrey to the dentist for the 1st time, see my family more, cook, walk/exercise, ...blah, blah, blah.  Looking back I now realize I should've just set one goal: enjoy my boys. Luckily, I did do this. I just stressed about not getting other stuff done.
One huge positive about me going back to work is that I don't have to worry about the boys when I'm not home. Jamie starts his 3 months of family leave.  He is such a great dad and is super competent to be Mr. Mom. I know he's nervous because he'll be leaving his first graders for 3 months and having to spend some cold winter months with the boys at home. Please pray for us on Wednesday when we both start, in a sense, our new jobs.

One thing that will be done as of Monday is my last official clinic visit to Baltimore. Jeffrey has a post op appointment at 8:30 and PT at 1. Hopefully, we'll get some cool xrays and hear some good news about how well Jeff's bone is growing. If we're really lucky, we'll get a date for fixator removal. That should be interesting.
Well,...this is me signing off for this Sunday. I'm going to go stuff my face due to stress and attempt to start some lesson plans for my return to work on December 1st. Wish me luck!!!
These are some of the things I'll miss:

Belly time watching Pocoyo

Trips to DQ for playing and eating

Making forts

Brothers playing outside

Hanging with cousin Mandi

Cute and crazy Jack E.

Bucket-heads

Lunch together

Goofiness

GOOD NIGHT!

You HAVE TO eat that bacon before you get any apples or grapes!

Post Jeffrey shower (reason for being naked while Jack is in fleece)

Jeffrey had his 4 year old check-up at the pediatrician last week. I love going there because Jeffrey is like a celebrity now. The nurses and receptionists all know him because of his fixator. Some saw him in the paper. They all ask how his leg is doing. His response...? GREAT!
I brought his walker with us since he's been using it to get around the house after the most recent surgery. He had been scooting on his butt (which covered his velcro-sided pants with Cooper fur! Eww!) Then he gradually moved onto using his walker. Our main concern with his walking is when he sticks his left hip up and out to accommodate for his right hip not extending fully and we remind him to keep his right foot straight. His foot really turns in, but we think it's because of his flexible ankle due to the Fibular Hemimelia (FH). Wow, that lead to a slight tangent. Anyway, we go into the pediatrician with his walker. As soon as we get called into the room Jeffrey was all like look at me walking with no walker. It was like I was an idiot for bringing the walker, he walks all the time like this. Ha! Well, that was the first day he stopped using the walker. It was nice.
Dr. M. came in and he's so great with my boys.  Jeffrey really likes him because he messes with Jeff. The first thing he did was bring my skin and bones child to the scale. He picked him up and put him over his shoulder and was pretending to take him away. Jeffrey was cracking up! He came back from the scale slightly disappointed. Jeffrey is weighing in at a whopping 32 lbs!!! (That's sarcasm for those of you without kids! To put things into perspective my Jack who's 1 1/2 weighs like 25 lbs.)
So Dr. M. advises us to fatten this kid up. Well, good luck with that because we've been trying to do that since he was a baby. He recommended we do the same things now as he said to then, like feed him bacon, bacon fat, olive oil, extra butter...etc. Gross, right? He has always liked butter with his food, I mean like chunks of butter...like as a side. We don't give that to him, but lately he'll take the unmelted wad of butter from his waffle, veggies, oatmeal and just pick it up and eat it. (I think I just threw up a little in my mouth) The latest drink of choice...ready for this...? Chocolate milk, but not just any chocolate milk. It's 3 oz of whole milk, 3 oz of half and half (ew) all mixed with chocolate syrup! Then the doc mentions Haagen-Dazs ice cream and Tastykakes. Yum!! The very things I've been trying to avoid!!! Now, doctor's orders...they have to be in the house.
Jamie and I found ourselves at the breakfast table the other day saying, "Eat that bacon." Jeff requested more fruit. "You have to eat that bacon before you get any more apples or grapes!" What is wrong with this statement??
Our latest goals...grow good bone and fatten up our son. Gee, we wonder why obesity is a problem in our country!?

Hallelujah!!!!

What a great morning!!!! Jeff and Jack were in great spirits!
Get this one! Jeff did great unwrapping, great in the shower and awesome wrapping during pincare!

Thumbs up for rockin' pincare!

Jamie was so great and inspirational with Jeffrey's pincare this weekend. He cut his hair, while Jeffrey cracked up. I failed to mention he put on a mask! They did pincare and showered all with Jeffrey cracking up. What can I say, my hubby is the man!
I think I just get caught up with getting it done and being frustrated that I don't have fun and let the poor kid be a kid.
Today I did my best to be calm and goofy. For some crazy reason it worked. In the shower Jeff wore his purple goggles and we let it rain with the shower head. Jack even joined us by taking his shirt off and playing in the water from outside of the tub. We all were laughing. This is how pincare should be everyday.
I know this post isn't that exciting, but I feel like I've been such a Debbie Downer that I had to share some happiness and success in the world of pincare.
Here's to the rest of a great day!!!



Here are a few random pictures of belly time: (belly time is what Jeffrey does 2x a day to help with his hip extension. He can't lay flat so letting gravity take it's course and stretching his muscle  by pulling his leg up are what we do!)

Poor Jack E.

My poor little man. He is so cute but he has my grace and agility. This basically means he's a mess and he's always hurting himself. He runs around the house and falls constantly. On Halloween night we were at a split level house and have gone up the concrete stairs to get there. My little Jack-in-the-box tumbled backward, head over heels down about 5 steps to a landing. Needless to say, Halloween night was over at that point. Luckily, he cried and didn't sustain any (noticeable) damage.

Jack in the Box :)

His little head scrape scabbing over

Then, a few days ago he ran into the door jam of the bathroom head first. He was running down the wood floor of the hallway and slipped on his socks. He fell head first, but his head slammed into the molding. I heard it, saw it and saw the aftermath. YIKES!!!

Nice lump, right?

This poor kid doesn't stand a chance! God love him!

Life is getting shorter

I swear that pincare is shaving off a few years of my life. With a screaming 4-year old, a climbing up my back toddler and a dog breathing down my neck (with smelly poop-eating breath) all at the same time, I have lost at least 3 years today on my heart!

What a Week!

Last week Jeffrey was having trouble lifting his leg and walking and was just not himself. He was cranky and crying a lot. That was his body's way of saying, "Something's not right!"
I e-mailed Dr. Standard and the physical therapist in Baltimore. The PA called me back and said it's hard to diagnose Jeffrey over the phone and to bring him down. So....Wednesday morning I quick got the kids dressed and ready. Wiped my tears, hoping that nothing was going to be wrong. Jack went to Ms. Chris' (she rocks) and Jeff and I made the drive down to Baltimore!

We got xrays and saw Dr. Standard. It is not a clinic day so the doctor had to come out of surgery to talk to us.
After looking at Jeff's xrays, Dr. S said he had a loose screw (go figure!). Actually, it was two loose screws. The xray showed a dark gray area around those pins, meaning the bone was not keeping the pin in tight. 

the top 1st and 3rd pins are the ones that were loose

This was probably the reason he has had trouble in PT and at home. The plan??? SURGERY! UGH! That is so not what I wanted to hear. Surgery would entail taking out the 2 loose pins and putting a new one in a new spot at the top of the femur to keep it all stable.
I called Jamie as soon as we were out of the office and back in the waiting room. I hated to interrupt his class but I knew he'd want to know what was going on. Poor guy. I had him worried. I know it's gotta be hard not being able to be with us because of work. I told him all the info. We agreed that one good and scary thing about having this surgery is that Dr. Standard mentioned maybe taking off the tibial pins and the arch across the knee. Interesting....
We were waiting for an official surgery date. They wanted to do it that Friday, but selfish me knew we had Pippet's wedding and didn't want to miss our good friend's wedding. We scheduled it for Tuesday, November 2nd, if he could wait that long.
We took it easy on Halloween using the double stroller.

Jeffrey (aka Star Wars Man), Gaetan, Max, Jack (in the box)

Fast forward to Monday night. My sister, Jen, graciously, volunteered to take Jack E. overnight. That way Jamie and I could both be with Jeffrey the whole time. We stayed overnight at the Hackerman-Patz House since we had to be at the hospital by 6 a.m. for his 7:30 surgery.

watching tv at HP before heading to the hospital

pre-op

The half hour surgery ended up having us wait for like 2 hours before we heard anything. That made us even more nervous. The anesthesiologist came out to bring us to the post-op recovery area to see our boy. We didn't know how we'd find him. He was talking and wanted to sit up.  He said he wasn't in pain. He was looking around and reading numbers on signs. He drank down 3 things of apple juice. NO O.J. this time. We learned our lesson.
I broke out my camera to take this pic and he freaked.

eating graham crackers post-op

We were all like, "What's wrong? What hurts?" "I want mommy to stop taking pictures!! WAAHHH!!!" haha and oops.
All he wanted to do was get in his stroller and leave. I was anxious to see what his new fixator gadgets looked like and what the bottom of his leg looked like minus the fixator part.

fixator on top, bottom all wrapped in an ace bandage, fixatorless

Now, it's Thursday. The first few days have gone surprisingly well. Today was the first day of post-op pincare. Thank God Jamie was home so we could go at this thing together. We took turns doing woundcare and holding Jeff's hands. I am posting pics below of the new "ghetto rigged" fixator and his pin holes from the tibia. Squeamish beware!

left and right pins are brand new, middle pin, the original (I think)

holes where pins used to be in tibia

pinholes

Gentle was the word repeated over and over again by all hospital staff and the PTs. His tibia is now like swiss cheese. It has holes in it. Yea, no pressure mom and dad, but don't let your child do anything a 4 year old might do. haha He could break his leg. Greeeeeat!

Oh, did I mention this was all on the hush from my parents? Well, they are on a cruise around Hawaii. My mom, who hates boats and hates water at night, went on a cruise. I figured being nervous and stressed about that was enough. I was not going to add to it. There is nothing they can do. I wasn't going to blog or post on FB in case they'd catch it. Well, now they know, so the secret is out.

We don't go back to see Dr. Standard for 4 weeks. He recommended no PT until our next clinic visit with him. That will be nice b/c it will free up our schedule quite a bit :) Enjoy our latest adventure.

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 :)