Friday, January 29, 2016

He Found the Evidence

Scars....we all have them.  Marks on our bodies that become part of us.  Brayden has the coolest markings on his effected leg from his first round of lengthening.  They are his battle scars and we have become so used to seeing them that they are a part of him and not noticeable to us....that is until he noticed them for the first time.  He has always taken note of his knee scars, the long one in particular where the part of the fixator dragged his skin with the growth of his leg and the tibia scarring he refers to as his shark bite but last night for the first time he noticed the scars going up the side of his hip from the upper pins and screw insertion and removal and reinsertion.  I hadn't realized he had never noticed it before and he kind of freaked out on me last night when he saw them.  It started with dry skin on his hip, I rubbed lotion in and when he looked at the dry skin he saw the scars he was like OMG what is that?!?    It was time to have "the talk".  I tried to gently explain that was part of his surgery marks, we had just talked about it on the way to school yesterday when he asked if he still had any metal in his leg.  It was difficult for me to find the words that wouldn't scare him but also explain exactly what it was and that they wouldn't hurt him as he now thought the source of his itches was the scars :(  Oy.

He has been doing good.  He is old enough now to realize his shoes are different and that he has to wait two weeks for "Mr. Jack" at VP Shoes to make him special shoes when he gets new ones instead of walking out with them.  He actually told a friend yesterday he has a big shoe to help keep him up!  I love listening to him explain things his way, it's one of my favorite things about having small kids in general.

When I picked him up yesterday he tells me he had meatloaf for lunch and he was a member of not the too bite club but the four bite club this time!  Then he tells me he did not like the "pretzel sprouts" that looked like balls and tasted like poop but the corn muffin was so good he had two.  I love life with a five year old, it is like living with your own personal comic relief to keep you laughing and certainly on your toes all day.

Things are good, Brayden is thriving.  He is falling a little more these days as to be expected with his difference growing greater but life is good.  He is happy.  We are almost a year without surgery and looking forward to a few more surgery free-kid happy years before we gear up for the next round of lengthening.

Monday, January 11, 2016

Shorts, Again

It's 40 degrees out right now....and Brayden just went to school in shorts.  Yep, you read that correctly.  My kid is that kid you see on the playground and probably judged his mother for sending him to school without weather appropriate clothing on but I have given up the fight.  Unless there is snow on the ground or below freezing temps if he wants to wear shorts to school, guess who is wearing shorts to school.  I asked him about this, he says he likes the feeling of being cold on his legs.  Whether this is a FH/CFD/PFFD things or now who knows but I am not fighting with him any more.  His teachers have been made aware that he will come to school with winter clothes packed in his backpack if he is cold but I am giving him room to express his autonomy and ability to control what he can on his body - his clothes.  I am sure we will fight on mornings with frigid temps but for now I have to let this one go and pick my battles with my very fierce five year old.

Thursday, October 22, 2015

Annual Visit - Say Whaaaaaaatt?

We did it, we reached the visit where Dr. Standard is comfortable with seeing Brayden annually now instead of every 1, 3, 6 months.  Brayden was a little disappointed that he won't see Dr. S until he is 6 now but still pretty happy with how things are progressing.  We are going to keep the same lift size for now and the plan is still to do the next round of lengthening between 8-10 years old and a final round around 15ish but we would revisit that again later.  There are alternatives to a third round of lengthening like stunting the growth plate in his right (non-effected) leg.   This might be a decent option as he is on track to being 6'-6'2" anyway but I kind of like that he will be tall-tall so we will see how things are going and let him weigh in on what he wants to do when he approaches those mid-teen years.  It is his body, he will know how much pain he can tolerate at that point and what he would rather do and what he wants to outcome to be.  Regardless he is amazing and will have a normal life with even legs, that's all that matters at the end of the day.  Dr. S is keeping an eye on his knee and hip, he has always had a loose knee so that is something to keep our eye on, we need his knee and hip to be optimal before lengthening again in hopes that we will gain more than the last wrong yielded though 4-5cm on a 2 year old is nothing to downplay.

Monday, October 12, 2015

Save a Limb 2015


Save a Limb 2015 - our group is a little smaller this year but still mighty.  It was a perfect day at Oregon Ridge Park for Save a Limb walk and festival.  The kids had a blast but we had to get back to the shore for Isabella's first Homecoming Dance.  We told Brayden the night before about Batman.  He was pretty upset and his first remark was but "I'm Batman's Super Sidekick", what now?  I was so bummed but I didn't want to lie to him and I wanted him to understand that the spirit of Batman and doing good for others lives on.  It was a fun day commemorating our favorite superhero and donning Batman Caped Bags on our walk.  Thank you to everyone who donated in support of Team Footprints for Brayden, we raised nearly $2,000 again this year.

Wednesday, August 19, 2015

Batman is Gone

I woke up today to some very sad news...Lenny Robinson also known as Batman to so many children has passed away :(  Lenny has made such an impact on the lives of children and their parents going through surgeries and hospital stays at Sinai Hospital.  He has become a staple to that community and a fixture in the hallways at the hospital.  I don't know how we are going to break the news to Brayden, thinking about having to tell him before Save a Limb just breaks my heart.

Saturday, April 11, 2015

Not Just a T-Ball Game

I have waited for this day for five years, and anxiously excited for two of those years.  This kid amazes me.  I am in awe to see his strength.  I prayed for my baby to walk, he ran.  I played for my baby to be happy, he is so happy it spills on to every one around him.  I prayed for my baby to be fierce...spend five minutes with him, he has that one down pretty good.  Two years ago when he stepped on to the field and Jackson's T-Ball Coach let him hit a ball off the T after a game, I prayed that one day he would be on a team and today he blew me away just five weeks off the heels of his last surgery.  His attention span may be short these days but this kid can play ball and I am a lucky mama to witness everything he does in life but this especially.  My boy who "may not walk" is playing baseball.  I am humbled.  God is Great.

Friday, March 6, 2015

Surgery 5 Post Op



Brayden woke up from surgery with very little complications.  He cooperated this time and once he woke up we were out of there in about a half hour.  He did sleep about 30min in recovery but once he woke up he was ready to roll.  They gave him pain meds for the trip home and he did really well.  He didn't sleep a wink though and couldn't want to get his hands on his new Boomco gun when we stopped in Salisbury.

Brayden has returned to his sweet self.  The narcotics they give him make him a bit "moody" and we started to wean him off by Sunday.  He came home got up and tried to walk Friday evening.  He was in a considerable amount of pain Saturday but by Sunday afternoon he was walking walker free and just a straight legged limp.  By Monday he was literally skipping w a straight leg.  I can't tell you how many mini- heart attacks I have had since last Friday.  Between the snow and ice (like a moth to flame for small kids) and Brayden trying to do butt bounces on the couch, we have played referee all week telling him no and stop left and right.  

The 8plate was removed from his tibia/knee area and the screw in his hip was pulled out and a new one placed in about 5 degrees differently.  This screw can stay in potentially for years so we are good to go on the surgery front hopefully for a couple of years now.  Our next follow up isn't until the end of summer now a wahoo!

Brayden was not good with taking meds - surprise, surprise!  We actually got really clever this time and his his oxy pills in mini Cadbury creme eggs.  The trick was to still disguise it as an unwrapped egg as he inspects his food well before ingesting.  The kids all camped out together his first two nights home but by Sunday night he was back into his own bedroom.

The bandages came off on Wednesday.  When we were getting ready for school Wed morning he kept telling me to go our of his room when he got dressed.  Ten min later he came out and when I told him today was the day for the bandages to come off he protested no it's not I just tried and they don't come off!  Little turkey!  We took then off after school and he inspected the incisions and Dr Standard's doodles on his leg.  He had a nice shower and we covered them again with gauze padded band aids.  I am surprised by his maturity and quickness to heal though by now I shouldn't be.

Yesterday we had an ice storm and Jackson actually fell and injured his leg, I took him to the local ER and when we got back Brayden proudly handed me two adhesive strips and said here you mommy I got these off for you....they were is disolvable strips over his sutures.....oh this boy!  I am just grateful he didn't tear anything open.

Jax is ok, we go for follow up next week if his leg isn't better but he is hobbling around on crutches and Brayden's walker while Brayden dances circles around him and the dog.  Couldn't make this stuff up if we tried!

Here's to hoping for melting ice and an uneventful weekend!!!!!!!!  Our next task is shoe shopping, Brayden's lift size hasn't changed but his foot sure has!

Incision pics below for our friends anticipating their own 8 plate surgeries and wanting to know what to expect.  This is a good place to stop reading if your squeamish.  I think Dr S used the same incision as last time from when he put the plate in.  Stitches are under the now removed adhesive strips, the incision is about and inch and a half.  The hip incision is small. Maybe a little more than a cm.  So far pain has been tolerable w meds and now he is completely off oxy and Tylenol and pretty much pain free one week post op.



Friday, February 27, 2015

And When You Wake Up

Brayden just went in. Dr Standard expects surgery to last about an hour from start to finish but the actual surgery part about 20 min of that. He did good this morning. We got to the hospital at 630am and gradually got him undressed and into the hospital garb over a couple of hours. He got the goofy juice at 805, I was worried he wouldn't drink it, he usually protests and fights going under as a result but today I bribed him with getting a new Boomco gun on the way home. He still didn't like taking the medicine but once he did he said it wasn't so bad. I think the clothing and the rejection of meds is him controlling what little he can right now. I do my best to listen and reassure him as best as I can. He was nervous lastnight and this morning. We hadn't told him about the surgery until yesterday, we didn't know how or how much to tell him without creating anxiety for him so during our appt yesterday with Dr Standard we asked his opinion and he broke the ice for us. He told Brayden that he would come see him today and that he would take a nap and during that nap he would move the metal plate out of Brayden's knee and look at his hip and when he wakes up it will be over and he will have medicine in him to make him not feel it. He assured Brayden that when he wakes up if anything hurts we will take care of him and help him to not hurt with medicine. He seemed good with that explanation and even repeated it to us a couple of times over the evening but right before bed he seemed anxious. He said he doesn't want Dr Standard to do his leg or take the metal out :(. After a long protest to go to sleep he finally clunked out in my arms at 930. When he woke this morning I held him a lot and talked to him more about his concerns and assured him that everything would be ok and mommy and daddy would be here with him. I asked what he wanted for dinner tonight and he firmly stated Outback so he will be getting some OC Outback takeout tonight! He told his nurse this morning the same, that he was getting Outback tonight because they have the best fries and sprite and she that that was funny.

He went under a lot easier today than the past four surgeries. With the juice in him he was relaxed and listened to me, I rubbed his hair and arm while they hooked him up to machines and I got to hold the cotton candy scented anesthesia mask as he went under. I was so proud of him, he was brave and calm today and watched me and looked around at everyone but didn't fight the sleep today. He squirmed a little and fell into a sleep quietly and I got to kiss him and tell him again how very much I love him and that I would see him soon. He has two Eyeores waiting on his departure bed for him!

We had a good appointment yesterday, he is still at 3cm discrepancy and everything is looking really good. The 8 plate has done its job and it ready to come out. The screw in his hip has helped detour the direction of growth in his hip, it may need to be adjusted about 5 degrees but that has done a nice job this past year of redirecting the growth and stabilizing itself. Brayden was excited to see Dr S and liked getting pictures and X-rays, he thanked the X-ray tech for takin pictures of his bones for him and got too stickers for being a good boy.  He fell asleep in the car on the way to dinner and we woke him right up in hopes he would want to sleep earlier at bedtime (haha).  We picked up cheesecake from the Cheesecake Factory for dessert lastnight after dinner, he loved his vanilla bean cheesecake and asked for more of it today, lol. We played ping pong, toys int he playroom and games on the wii before retiring back to our room for bed but sleep was sparse for all of us lastnight. Brayden fell out of the bed once in the middle of the night and mommy and daddy couldn't get comfortable, then there was the fear of oversleeping so Joe and I woke up several times checking out phones for time.

We talked to grandma, Jackson and Isabella this morning from pre-op, Nanna is coming up and Brayden will be happy to see her when he wakes up.

Thanks for all the prayers, this is one tough little guy.












Thursday, February 26, 2015

Bye Bye Curls

After months of begging Brayden is getting a haircut!  He loves his curls but loves having short hair so much better :(. Mama was sad to see them go but seeing his big smiley grin sure made up for it!

Home Away From Home

Well we made it! We actually came lastnight to get ahead of the snow that was coming our way on the Eastern Shore. We got to the HP House lastnight and Brayden wanted to play a game of ping pong right away! We changed into sweats and played for awhile downstairs to wear him out a bit after the long car ride. To end the evening we let Brayden choose a movie from the HP house movie library to take to our room, we watched Super Buddies until he fell asleep around 10.

The snow did fall in Baltimore lastnight but not nearly as much as it did back home. We are waiting now in the Clinic to see Dr Standard for pre-op X-rays and exam, Brayden is sure excited to see Dr Standard! He has been looking forward to seeing him all week and coming to "Miss Amy's" house, we were glad Amy had a room for us for an extra night to come early lastnight.







Tuesday, February 3, 2015

Ice Skating For First Time!



You have to know by seeing these images how proud this Mama is!  We went ice skating for the first time over the weekend and it was a blast!  Brayden loved every second of it and told me he would like to ice skate every day!  He loved when we pushing on his walking and make him go faster than his legs could carry him and he boasted even more that he really could do it hisself when he realized he didn't need our help.

Thursday, December 18, 2014

My BIG Boy!

We met with Dr. Standard today,  had an amazing appointment.  Brayden was up before we were to get ready to go.  He wore his batman shirt (and underpants!) because Dr. Standard really likes Batman!!!  Brayden is at 3cm discrepancy now and is growing well.  His 8 plate has done it's job and will be ready to come out after another month.  This will be his 5th surgery on his leg to date.  We set his surgery date for February 27 to give him time to heal before baseball season...you have never seen a kid more excited to play baseball than Brayden!  He won't need a lift put on his spikes because kids run on their toes anyway so it shouldn't be a big deal.  When the plate comes out in February Dr. S is going to re-evaluate the screw in his hip while he is under and see if it needs to be repositioned but it looks like he is growing out of the screw itself.

We got a chart of the projected discrep at different ages, the difference will be about 7.5cm by the age of 10.  We are projecting the next round of lengthening to be closer to age 8-10 now as opposed to 5-6 as we originally thought.  Part of this is so he remains a candidate for the internal device vs. the external fixator and also Dr. S recommends this being a more cooperative age as kids are generally asking for the surgeries by that point because of social issues :(.  Soooooo we got a more accurate assessment of how tall Brayden is going to be....wait for it.....any guesses???  6'1" - 6'2" - teehee.  I knew he was going to be big, he is wearing Jackson's clothes from last year, the kid has sprouted up and he is beefy.  He has always been 50-75perc on the growth charts for height where Jack and Isabella have been 5-15%.  I almost fell out of my chair when he told me that today!  I knew he would be taller than all of us, I was guessing 5'8"-5'10".  We will have options with how to proceed with lengthening his left leg.  After the next round of lengthening we have the option of doing a shorter round close to age 16 or even slowing the growth in his right femur.  No decisions will be made until the time comes and we see how Brayden's body tolerates the internal lengthening but it is nice to know we have options in case one avenue doesn't work out for us.

We ended our trip to Baltimore today with a meal at PeiWei, Brayden lapped up the rice like there was no tomorrow, he filled his belly so full he actually slept the whole three hours in the car on the way home!  He hasn't taken a nap in 4 months so that was a nice quiet ride home for Mom and Dad!

We hope everyone has a safe, happy and healthy holiday season!!!!






Saturday, December 13, 2014

Christmas at RIAO


We spent the day with our favorite doctors and friends. Brayden was so excited to see Dr. Standard that he counted the sleeps until we went for over a week. While he normally will not wear a button down shirt without a fit, this day he was excited to get up and look good for his favorite pal. He was more excited to see Dr. S than he was to see Santa. Wen we got there the Baltimore Fire Dept was there giving toys to the children and they got to have caricatures made and photo booth photos taken. We ate and caught up with other families and when Brayden say Dr S he couldn't wait to show him his curls and give him a hug. He was excited to see Michelle on Dr. Standards arm, his 18mos old baby girl. Brayden was full of excitement and affection, he gave Dr. herzenberg a big hug and wanted him to uppy uppy him too! I fought tears seeing how beautiful the children were in their stages of treatment, some have come so far it is amazing, just amazing to see where they are now from just a couple of years ago, it was a really great day! We ended our short trip to Baltimore with a little shopping at Towson Mall, the kids couldn't believe what a real mall looks like! I guess living in our land of outlets and our small one story mall they wouldn't know the difference! The parking garage alone was an adventure to them!