Plate Envy

This morning's breakfast starts out like any other...Jeffrey requests mom to make pancakes, mom replies, "Not today." (I probably shouldn't have made pancakes like every morning last week.)
I offered frozen french toast sticks, yummy! We all wanted to dine on those unhealthy pieces of frozen bread drenched in syrup. Wait, did I say "frozen"? Yes, I did. Neither child could handle waiting 50 seconds in the microwave for their sticks. Don't worry, I didn't serve them frozen. I had to listen to two whining babies, at that point they were both acting like babies, for 2 minutes while each of their breakfasts were being heated. Waaaah!!!!!
So I want to give them choice and I let Jack choose his plate first. He picked a plastic purple plate with green trim. I was going to give Jeff an adult/big boy plate. No, he wanted a plate like Jack. So I gave him the green one with blue trim. Good, both are satisfied with their plates, right? Wrong!
Jeff: "But, why does Jack E. get the purple one? I NEVER get the purple one"
(Jeff's new favorite complaint is..."But, I never get...." or " I never get to..."  even though that's not true)
Back to the plate drama. This plate jealousy went on for about 5 minutes.
Jeff: "But, why don't I have a plate like Jack."
Me: "You do, it's  just a different color."
Jeff: " No, I don't! I want one just like his. The same color."
Me: "Well, we don't have another plate just like that one. Yours matches his. They both have blue."
Jeff: "But, I want that one!"
Me: "Stop talking about the plate. You have french toast sticks and syrup and your milk, eat and appreciate what you have."
Jeff:....
Jeff: ...BUT I want that plate. I NEVER get that plate.
He then took  a break from the table and when he was done hysterically crying he returned. We had a short convo about his not talking about the plate anymore when he goes back to eat. Wanna guess what his first words were when he got back into his chair at the table? Bet you can't guess.
Jeff: " I really wanted that plate. Why does Jack E. get it?"
Off to his room he went, again hysterically crying.
After about 3 minutes or so I hear from his bedroom, "I calmed down."
He came back to the table, but had no plate and his french toast sticks were on the bare table.
Jeff: "Where's my plate?"
I explained that if he wasn't going to appreciate the plate he had, he doesn't get one at all. haha, mean mommy!
Jeff: "I'll preciate it. Can I have it back?"
Me: "We'll try again at lunch to have a plate and not complain about it."
Jeff: ok :(
The moral of the story:
appreciate (or preciate :) what you have, even if it is a plastic plate that's not the right color.

Wait, wait, wait

After our 3 hour drive, yes, 3 HOURS in rain, moisture and traffic we made it to Sinai. We waited in traffic. I brought my mom with us to meet Dr. Standard and hang with us for the day. I'm really glad she came. : )
We planned to have 8am physical therapy with Sunni, but our 8am arrival turned into an 8:54 arrival. So, we made poor Sunni wait. Luckily, she was able to see him for a little bit and get his measurements. He got 60 degrees on his knee, which is awesome!!!! We are really happy about that. His hip is at -10 degrees which is what it was when we left, so that's good too. Good PT eval. A+ report card :)
Then we elevate to the 2nd floor to wait. We got our pictures, xrays. Then we went to a room to... yep, you guessed it, wait.

The longer Jeff waits, being the energetic 3/4 year old that he is, the worse his behavior gets. My mom says he was really good. I think he was a show-off for her and the Dr. I'm trying to listen and he is ripping the paper and waving it like a madman with pompoms.

We met with Dr. Standard and took a look at the xrays. Jeffrey is now 2 inches, 5.2 cm, taller. I thought we would hear, " 4 more weeks of turning." Since 2 weeks ago we heard 6 more weeks. Well, it turns out we are looking to get as much length as we can maybe even 8cm. Yea, doubt we are gonna survive to turn that long. Jeffrey is asking to have the fixator off already. He will be keeping it on for about 4 more months. Little does he know how long that can be. Especially when 4 more months means like 120 more days of pincare! Ahhhh!

We visited Hackerman-Patz to see Ms. Amy and Mr. Bill and any other friends we may have missed. Jeffrey wacked around the pingpong ball with grandmom. We even got to see our buddy, Kevin. He is officially done turning/lengthening. He got locked down yesterday.

We ate lunch at the cafeteria. We were privileged to eat with our favorite lifeguard, Big Al! :)
We got on the road and made it home...without waiting!!!!! Not raining, no traffic...smooth ride :)
All in all, good visit and we go back October 7th.

Is it wrong...?

So, is it wrong that Jack learned 3 new words since we've been home? No? Okay, good.
Wait, let me tell you what those words are, then you decide what a bad mom I am.

"Wii"

T.V., for which he says "D.D."

"Eat"

I swear we do more than watch tv, play Wii sports and eat.
( I had a picture of Jack E. to post, however...my camera is busted and it won't work, which means the connector to the computer can't read the card in the camera! Grrrr!!!)
I'll post one I already have.

3 accomplishments in one day

Excuse me while I boast about yesterday's accomplishments:

1. I beat the final Bowser and the whole game of Super Mario Brothers on Jeffrey's DSi.

2. I baked chocolate chip cookies from scratch.

3. I food shopped in the thunderstorm with a metal cart at 10pm. (There's no way I can take a fixator child and a baby to the grocery story. a = I can't fit them in a cart with groceries, b =I don't know when we'd get there.)

Thank you, thank you!!!

P.S. (just so I can add a picture...we'll add another accomplishment. 4. I made Jack E. look like Hermie the elf/dentist from Rudolph, the Red Nosed Reindeer.)

It's a good thing I don't drink

By 9:30am I would have had something to drink.
Jeffrey thinks that the best way to teach his brother to stop touching him and his stuff is by punching him or squeezing him.
Great!!! The teacher in me kicks in. I got 2 screaming kids, one who is injured and one who is p.o.'d. I sit both kids down and, when they are done freaking out and can hear me talking to them, we discuss  the best way to let your brother know not to step on your fixator is by telling him, "That hurts, don't step on me." Punching doesn't solve the problem.  The best way to have him not run his toy into your tracks and ruin them all is to tell him how you worked hard and his breaking it made you sad. This, I feel, will be a long ongoing process of modeling.

Jack sulking because he didn't get his way

This afternoon, however, was great! We visited Ms. Chris, who is like Mom #2 to my kids during the school year. Jeff hasn't been to the sitter since June and the boys and I wanted to go visit. The two other brothers, friends of Jeffrey's, that were there had a great time playing with Jeff and Jack. I think the 4 of them have grown so much and played and shared so nicely . One of the boys even cried when we left. He said he was gonna miss Jeff. We definitely have to visit more often.

To sum it up, day 3 of stay-at-home mommyhood was pretty good. Now, the boys are in their beds (notice I did not say they are sleeping b/c they are not). I can't decide whether to go sit outside in the sun or do laundry/dishes. Hmmm...I'm torn. I know the clearly obvious choice should be do housework. But...the outside is calling saying, "I won't be warm and sunny for long! Your housework will be there f o  r  e  v  e  r!!!!"
You know what, outside? You're right. Here I come!!!!
Nevermind, before I posted this Jeffrey called me into his room to rub his leg b/c he's in pain. Looks like I'll be staying in the house to answer my darling's calls.

Home

Today marked the first day of my "stay-at-home mommyhood". I got up, saw Jamie off to work, the boys and I ate breakfast (well, the boys wore their oatmeal but hopefully some got in their mouths), we played, did pincare, had lunch, went to PT.
While in therapy Jack and I power walked around the outside of the facility so I can make some good use of that 50 minutes in therapy. Yes, my thighs were itchy and burning from the strangeness of real exercise. I figured if Jeffrey's working, I should too. ( Had to work off the Mack & Manco's Pizza and Johnson's Popcorn from Sunday in OCNJ and the cotton candy, hot dog and pretzel at the Phillies game on Saturday.) (an aside: Thank you to the Stumpfs for the tickets :)
We had a busy, fun-filled weekend home.

Phanatic Statue (Jeffrey, Jamie, Cousin Kyle)

National Anthem

Yelling the Phils to victory

Jeff had a good PT session. Somehow he got 65 on his knee ROM (range of motion)! Woohoo! Let's hope this is the same way they measure in Baltimore. When we left on Friday morning his ROM was 52 degrees or so. The hip and knee ROM are our biggest concerns. We need to maintain flexion in both. We go back to Baltimore on Monday the 27th for our next clinic visit and xrays. My, how's he's grown! :)

Fixatored

Fixatored: (fix*a*tor*ed): verb past tense
To be scraped, scratched, bumped or bruised by a fixator.
ex: Many people and things have been fixatored in the past 2 months by Jeffrey.
Please see photographs below:

thigh scrape

leg bruises

The fridge (the rug is reflected in the black fridge)

molding

toilet seat

Jeffrey even fixatored his own thumb during an intense game of Wii :(

That thing is dangerous. He should need a permit to carry it. If you see a fixator coming your way, just be sure to keep your distance. It comes at you at fast speeds and can cause significant damage.

If you or someone you know has been fixatored, just know you are not alone! 

I feel your pain, literally!

Our Own Version of Groundhog Day

So...Jeffrey did see his shadow today which means 6 more weeks of turning!!!

Playing Hotwheels

We had our clinic appointment at 9:45 today with Dr. Standard, which means we saw him at about 11:15, which is quicker than usual. Anyway, we took standing xrays today, which is different than usual. And..drumroll please...no blocks under the fixator leg!!! Yay!! Woooo!(That just means, he's getting closer to even).
We are now at 4.3/4.4 cm of growth. Sweet!

A Standing Xray! 4.3 cm of growth (he's crooked b/c he's holding on to me)

I asked how much longer Dr. Standard thinks we'll be turning and he replied with, "About 6 more weeks." I don't know why that seems like so long to me. I mean, I really was thinking only a few more weeks. But, now that I process it, by talking to Jamie and he said it's only like 1.5 more months, it makes more sense. If we were still turning at a rate of 4x a day then, it would probably be less time. We are down to 3x a day to maintain a decent ROM on his knee. (That's my fancy PT acronym for "range of motion")
One downer of the visit is that one of his pinsites is forming a "halo" in the xray. This means that it could be coming loose. The doctor says he'll keep an eye on it and if we need to, it'll just be a minor surgery to put him under and replace the pin. Yea, okay! I love how taking out a screw and sticking a new one into my son's femur is just minor surgery now!
So, all in all I guess our visit was good. We are hopefully going home for good this Friday. We need to have PT lined up at home. Let's  hope our insurance gets moving and approves us for it really soon!
I think that's all I have to report for today. Sorry, I haven't updated since my venting rant last Wednesday. All good now :)

Love my big boy!!!

Attempting to maintain sanity today

"Mom, I love you." Thank God for comments like that from Jeffrey. If he didn't randomly chime in during the day with cuteness I might really lose it!!!
We rolled into the HP last night around 10:15. (Thank you, Jamie, for helping keep me awake on the phone!) Jeff had fallen asleep around 9 in the car. We unloaded and he wanted to climb right into bed, only the bed wasn't made. I wanted new sheets for after the weekend so he had to wait til I made the bed. Then he needed me to cuddle with him. Even though I was planning to unpack and get the clothes and pool/shower supplies ready for the next day, I fell asleep.
Okay, fine, I must've needed the sleep, but then since apparently my phone battery was almost dead my alarm never went off. Luckily, my internal alarm went off and we were up in time to get to PT by 8:00.
Since my dead phone needed charging I brought it and the charger with us so I could juice up the battery. Well, I plug it in and a message pops up, "Unauthorized charger." REALLY??? Why would I have a charger that my phone isn't compatible with? Jamie doesn't have the same type! What did I bring? I'm glad I had my car charger.
So after land therapy we got ready for pool and unwrapping the gauze was awful. He cried and screamed. Pool was fine, then pincare. Dear God, pincare! Well, it was horrible today. He was back to his screaming again. He worked himself up crying so much that he was gasping for breath and he was soaked with tears. The therapist and I thought one of the pinsites looked iffy. That meant we should start antibiotics for a possible infection. Antibiotics that he'll take 4x a day for 10 days. Ugh!
So... after the torture of pincare we headed back to the HP. He didn't want to talk to anyone and he just kept crying. He calmed himself down and we ate some pb&j for lunch.
He said he was up for a trip to Target so we could get some food. How foolish was I to believe him?! After about 10-15 minutes we were in Target's snackbar getting a nasty hard pretzel and a blue Icee, that of course overflowed with carbonation all over the floor. The trip through Target was short lived because Jeffrey started to cry and complain of pain. He just kept crying and said he wanted to leave. Once we grabbed stuff we made our way to the 10 items or less aisle. (I had like 14 items. Yea, I was that person.) I needed out with my crying child. Did I mention he can't sit in a cart b/c he can't fit? I push him in a jogging stroller which doesn't have tons of grocery storage. The items are bagged and before I grab them all I attempt to take one last sip of my blue Icee. I go to swish it around in the cup and the watery part splashes out all down my leg, arm and one of the plastic bags. Mind you, Jeff crying, people behind me waiting, gotta pick up bags, Icee dripping... UGH! I just wanted to drop everything and cry. It would've been great if I did that and just yelled with my arms in the air, "I GIVE UP!"
Alas, we made it back to HP. Jeff fell asleep in the back seat of the car. There goes his nap. We are now laying in bed watching a video. I gave him pain meds and antibiotics (FYI: he usually only gets pain meds in the morning before therapy and at night) Hopefully, he'll be feeling better and more social for craft night tonight.
You know when you're frustrated you just want to flip out at the person making you crazy? (ex: "Mom, I think I do want my pain medicine." Okay, so I stop rubbing his leg, get up from the bed and get the meds. "MOM! You're not rubbing my leg!!" Breathe, Jill, breathe. He's only 3. "I know, honey, I have to get your medicine first and I'll be right back." "RUB MY LEG! WAHHHHH!" Give meds, rub leg..."Mom, that feels good. I love you.") and Mom's back :)

Sorry, no pictures! Yea, it was that kind of day! If I didn't take pics you KNOW it was rough!

Tackle!!!!

This weekend was known as the "somewhat back to normal weekend" in that the boys did a lot of tackling and Jeffrey got to play baseball outside.

Jack tackles dad, Friday

Home to tackle dad, Friday

Being silly reading together, Friday

Dinner with friends at the Pappalardo's, Saturday. What happens if I touch this part? haha

 

Throwing, Sunday

Batting, Sunday

Tackle!!!!!

Jump on dad, Monday morning

Visit with fam, Monday

All in all, this weekend was a nice end to the official Summer vacation. It's so strange knowing that the rest of my district, including my wonderful hubby, is starting school tomorrow with students. It's my first time in 9 years of teaching that I will not start the year. Meanwhile, I will be taking Jeffrey to a local PT eval to see if we can get therapy lined up for being home. Then...$15 in tolls later, we'll be back in Baltimore.

Be who you are, and say what you feel because those who matter don't mind, and those who mind don't matter

That is a great quote from Dr. Seuss! I'm not a huge fan of his books, but I am becoming a bigger fan of the man himself.
It makes me think of what Jeffrey is going through every pincare! He SCREAMS! I mean not just a cry or a bawl, but an all out deafening, blood curdling, I-am-being-murdered scream. Everyone hears him whether your ear drum happens to be right up in there or if you're a few floors up from the basement, where we are. I know it doesn't matter what anyone else thinks, but it's tough when people make comments like, "Oh, you're the screamer!" "Yeah, we know you were doing pincare. We heard!"

Jamie and I are trying to figure out how much of it is pain and how much is drama. You can make a child stop doing something when they break the rules, you can make them finish their vegetables, but how do you make them stop freaking out during pincare?
During and after pincare we are sweaty, frustrated and just need to exhale. Sometimes, I've even cried.
We try to just post as much positive aspects of this as possible, but we are also keepin' it real. PINCARE SUCKS!!!!!

Good People

On my drive home yesterday I got to thinking what amazing people I've met in Baltimore. You know how things happen for a reason? Well, we scheduled our surgery at CHOP and then after hearing about Dr. Standard we decided to venture to MD see what the RIAO (Rubin Institute for Advanced Orthopedics) had to offer. There was no question that that was where we were meant to be. Dr. Standard is great and the facility had so much to offer. Where else could you stay and be treated just like so many other kids with the same disability??
Jeffrey has made so many new friends and so have we. The kids and parents have the same worries, some have the same troubles and we bond over them. When it's time to leave and be home for good I am truly going to miss all the wonderful people we have come to consider like family!

Kristen, at the play room in pediatrics

Brita, our 1st physical therapist

Zoe and Chris

Cullen, who taught Jeffrey how to set up his DSi

BRACH!!!!! :)

Madeline and Kevin

Dr. Standard, the best doc!

Gideon! :)

Jackie, Gideon's mom (Jeff took this picture)

Diva Ginny from Tupelo, Mississippi

Ms. Sunni, a pt (Ms. Kym: not pictured yet)

 

 Big Al, the lifeguard. What a nice guy :)

Mr. Moshe, PT

Ms. Virginia, Ginny, Brach (pict'd up higher, Brent (not pict'd)

I'm sure the list will grow as we meet more people 

(and I take more pictures of the people we already met :)