Thursday, August 23, 2012

Leg update!

Jack received 2 legs over the past few months. Our prosthetist suggested that we have one available in case the other gets wet/lost/broken. Surprisingly all of those have happened! Not many kids jacks age can say they have a 'spare' leg just in case. HA! We are still currently working on how we can use the leg at the pool/beach. We received a neoprine sleeve that goes over the top of his leg to keep water out. It's a pain to put on, Jack does not like it, and it does not keep water out, so he sloshes around in it after a few minutes. Not sure what the next step is, but for now when Jack goes to the pool, he just has to take his leg off. This prevents him from running around on the side of the pool or being able to jump in like some of the other kids. I have felt a tad frustrated this summer with all of this, but I know there are other solutions we just have not found them yet. Anyway, He has been adjusting to his legs very well. It feels like every few weeks we go see the prosthetist for 'tweeks' to his leg (adjusting for height, growth, foot position, new liners etc) I know this will be an on-going process until he stops growing - so needless to say its just going to be part of our life. We are becoming very close with our prosthetist and all the staff - I know it will be hard if we ever move or He leaves because of how much He knows Jack. These people are truly amazing! We were able to meet a collage boy through our prosthetist that has bilateral below the knee prosthetics and missing part of his Left arm. He is amazing! Currently he is attending college here in Charleston and is trying out for the baseball team! For the brief meeting we had at the office (while he was getting his legs adjusted too..) I was enlightened by all his life experience. I know Jack (and myself) will benefit greatly by continuing to meet people like him who have chosen a positive outlook on their situation. Here are some recent pictures!
All of jack's legs, not including the one he is wearing currently...from 8 months to now...

Friday, June 8, 2012

Oscar - An inspiring journey

Check out this video about Oscar Pistorias - I know i have shared many videos about him, but he truly is an inspiration.  I have a different perspective on those with a 'disability' after having Jack.  Does having prosthetic legs give Oscar an advantage above others?  No.  He knows no different - like the millions of others born with congenital differences that learned to walk with their legs - Like the nuroscientist in the broadcast says.. his legs are not bionic - they are just carbon and are only as good as the user.  It does spark a lot of debate - After you watch this - think about what you would do?  How do you view disability?  How does Oscar challenge you to think differently about others and the 'disabled' world - a world we live in that now has so many labels...

Oscar Pistorias - Interview on CNBC

Tuesday, April 10, 2012

What a mess...

Sorry to leave everyone hanging these last few weeks.  I had all intentions of updating my blog a few weeks ago..but life got in the way...somehow ;) 

James had to take a business trip to New Orleans, so we thought we'd take an opportunity to go a long with him for a few days prior to his business obligations to explore the city and visit with some old family friends of James'. (James was born in New Orleans and lived there till he was7.)  A week before we left, Jack had received his new leg and we were making great strides with him - he was walking short distances and able to stand on his own.  I was encouraged by this, since I was not looking forward to carrying him all over New Orleans. Our adventure with Jack and his new leg started right from the start at the airport.  I knew it was going to be a little chaotic with all the "stuff" we brought along with us and going through security - but I didn't realize how inept and un-organized the staff get when they are thrown off by a little prosthetic.  We get in line and start the process of undressing - putting all our stuff in bins, folding up Jack's giant jogging stroller (which barley fit through the scanner).  James walks through. Fine.  I walk through holding Jack.  BEEP.  The security guard them proceeds to ask me to go back through the scanner again with Jack.  BEEP (again). Ok - I tell the security officer that my son is wearing a prosthetic leg and that is probably what set it off.  In the mean time 3 different security officers are over with us.   Another security guard tells us that James needs to then carry Jack through the scanner and then I would need to walk through the scanner by myself.  We do this dance of going back and forth for a few minutes...then another security officer decides that we would need to get Jack to walk through the scanner by himself.  OK - first of all, he's only been walking a few days in his new leg.  Second of all, there are now 5 people surrounding us - intimidating Jack  - and of course Jack will not walk through the scanner by himself - he stands there - on the other side screaming.  This is getting ridiculous and I finally stay to the officer "Look - he's not going to let any of you touch him...can i just take off his leg and you can put it through the scanner?"  He replies,  "Well...uh...mam you don't have to do that...."  before he could say any more, the leg was off,  going through the x-ray scanner by itself (along with everyone elses' stuff who in the mean time were going around us).  James walks through, I walk through with Jack and we are fine.  We get the leg - put it back on and go on to catch our flight. What a MESS!!!   Luckly, coming back to Charleston from New Orleans, I decided to just take it off to prevent any additional hassle.  I am hoping in the future it will get better or there will not be such craziness ...I KNOW people fly with all kinds of metal implanted in them.  Amazingly, I found myself not caring what anyone else thought about Jack - taking his leg off,  leaving his covered stump in the open for all to see...15 months ago, that would have been a different story.  I was not in the place that I am now.  Time, persistence, experience, perseverance, and simply rising to the challenge has brought me to a different place....No doubt, I still have days where I feel discouraged or frustrated in the midst of his frustration.    Anyway...    In the mean time We finally settled in the swanky downtown hotel (not very suitable for children might I add..)  We stayed Wed and Thursday - went to the zoo and aquarium (although it rained most of the!), ate beignets (yum!) and enjoyed time together!

 Jack and I flew home on Friday to meet my parents here in Charleston.  They came (graciously and thankfully!) to help me with Jack for the rest of the weekend and following week while I worked and James was out of town.  It was so wonderful to have them here!  It was a little crazy - but they survived.  Jack's foot broke off while we walked around downtown.  Lucky, the prosthetist we see was a few miles from where we were and I was able to take him right over to get it fixed.  I am sure that it is not the first time this is going to happen - but part of me was frustrated and though - when Jack is older and his prosthetic brakes or something happens, how will he get around?  I suppose we will cross that bridge later...

Then, Jack got sick with feaver and horrible cold just as my parents were leaving - then I got it.    I developed a double ear infection (that was HOrriBle!) and James came home from New Orleans with bronchitis and sinus infection.  To say the least - we were all a mess! 

Jack's been walking better each day, although we are working on tweaking his gait with adjustments in the prosthetic.  He also continues physical therapy once/week.  We are working on weight bearing into his right leg a little more each visit as well as building up his trunk strength.  It seems draining some days, when Jack tells me "shoe off" or "shoe too tight", whines and whimpers and I am not sure what to do to fix it.  Taking breaks often and doing things gradually have been the key.   Jack wears 2 socks, a cushioned-type liner then his prosthetic shell.  His leg  gets hot and sweaty, so I find myself changing his socks throughout the day...I can't wait to see how he does in the 95 degree / 100% humidity Charleston summer...  This is his temporary prosthetic he is wearing now, and after we get everything 'tweaked' and he has adjusted to it - we will make him a permanent one....

Needless to say, I didn't take very many pictures of the last few weeks...but I will try to post a few soon!

Wednesday, March 14, 2012

Kyle Maynard

Thank you Kyle for your true show us ANYTHING is possible.  Thank you to my uncle Terry for sharing this with us! 

Wednesday, March 7, 2012

Visit with Michelle and Jillian!

It has been 5 weeks since Jack had his amputation.  I can't believe how time flies!  We went to see our prosthetist today so he could try to fit Jack again with the temporary prosthetic he made.  Jack was not ready to put it on last week, because his stump was still pretty sensitive to touch.  This week, he actually let him put the liner on (it fits snug against the skin) and the prosthetic shell.  He has a few finishing touches to make, but hopefully in the next few days we will have it done!  Jack will get a temporary prosthetic to wear and make adjustments to until the final prosthetic is made in a few more weeks.  As time goes on, I am so encouraged and hopeful. 

We enjoyed a wonderful visit from my sister Michelle and her daughter Jillian last week.  It was so wonderful for Jack (and me!) to have company during the week (and for Jack to be around someone who can't walk yet... it was good they shared lots of scooting and crawling time together!) It is hard for Jack to play with kids his own age now...just because he can't keep up with them (*yet*). 

Jillian is a little concerned about Jack's not-so-happy-moment...he's getting ready to throw himself down on the ground....wait for it...

Jack LOVES his new lawnmower from Aunt Michelle!  As you can see he gets around by "walking" on his knees...

Everyone had a birthday within a few weeks of each other, Michelle and Jillian - Feb James and Jack - March!

Wednesday, February 22, 2012

3 weeks post - op

 3 weeks since surgery.  Jack is still doing amazing.  We are just playing the 'hurry up and wait' game.  Waiting for him to heal. Waiting for swelling to go down.  Waiting for his leg to become de-sensitized to anything touching it so he can eventually be brave enough to put weight on it.  He has been pretty protective of his leg but has made accommodations to get around by scooting on his butt...or crawling.  He attempts to stand, but keeps his right leg up.  

Just a side note.. we have quite the auray of wildlife in our backyard - as springtime seems to be coming early this year.  Here's an eagle that has been living in our tree...we also have herons, osprey and 2 otters!  Don't even need to leave the house to see all this stuff!

 Special thanks to our friend Allison Scaia  who sent us some inspiring messages from a co-worker who participated in the Paralympics .  The company she works for - The Hartford - is a sponsor of the  Paralympics. She sent us a personally signed copy of her competition picture - as you can see she is an amputee.  How cool is that?  Jack already has inspiration and motivation from other fellow amputees and he's not even 2 yet!

Friday, we saw our Surgeon for a post-op check up.  To our surprise, he took the ace-wrap off, and fit him with a compression stocking.  He told us to give him a bath and let him get used to us touching it.  I was relieved (that he could FINALLY have a bath - I challenge any of you to give a sponge bath to a almost 2 year old.. ;) it's a workout in-itself...)  Anyway, we gave him his 1st bath in 2 1/2 weeks and he seemed to be pretty sensitive to just about anything, but he enjoyed it and so did I!  The stages are in the works for fitting him with his prosthetic within the next month.  We are truly excited!

***I wanted to post some pictures of his leg... it may be graphic to some of you, so don't scroll down if you do not want to see...****


Tuesday, February 14, 2012

2 weeks post surgery - not about me...

Today marks 2 weeks since Jacks surgery.  I found it quite amazing to think since he has done so well overall!  I was in the grocery store today and while I was scrutinizing a label of ingredients on a container of yogurt - Jack was giving his giant smile to a guy walking by in scrubs, with a scruffy beard and looked like he had not slept in days.....Jack raised is little right arm with his three fused fingers and "waves" to him and says "HI!".  Jack turns to me and says "Whzs Dat?!"  (as he asks with just about anyone these days..)  I simply replied "A man shopping for his groceries" and went back to my studying the massive variety of yogurt, hoping the scruffy man would leave us alone so I could find the best greek yogurt for the price without any high-fructose corn syrup and be on my way home.   The man came over and began to make small talk.  I just knew what he was going to ask.(What happened to Jack's arm?  What is wrong with his leg?)  I was not in the mood, although I pleasantly entertained his 'pleasantries' about Jack.  The man said,  "He has such blond hair...wonder why he didn't get your red hair?  He has such beautiful blue eyes and a great smile!  He looks like he has a wonderful personality."   "Yes, " I replied as i smiled at Jack..."he does seem to have a very positive outlook on things - not many things slow him down and I am sure that will take him far."   As we talked for another 10 min I found myself telling him about our challenges with Jack and how I have begun to realize this journey is not about me or jack - but about something bigger than us. ( I then found out he was a nurse just getting off the night shift and had 2 sick kids at home he was trying to help his wife buy groceries for...doh!) He paused and began to confess that he and his wife had a child that was developmentally delayed and it has been a real struggle for them also.  It was quite an insightful conversation...and just like meeting so many people - with or without struggles - I am beginning to FULLY realize:  1. We all have hurts and endure heartache that are only relative to what we know.  2. It is important to have support.  3. Don't ever judge someone based on anything. period. 

It brought me back to the devotion I had read this morning.  I had been reading this verse over and over after Jack was born, but my eyes were opened WIDE  when I read the excerpt from Charles Swindoll's daily devotional.  I have shared part of it here:

2 Corinthians 12:9-10
9 And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong. 

I need to underscore a foundational fact: God's goal is not to make
sure you're happy. No matter how hard it is for you to believe this,
it's time to do so. Life is not about your being comfortable and happy
and successful and pain free. It's about becoming the man or woman God
has called you to be. Unfortunately, we will rarely hear that message
proclaimed today. All the more reason for me to say it again: Life is
not about you! It's about God.

How can I say that with assurance? Because of Paul's response: "Most
gladly, therefore, I will rather boast about my weaknesses, so that
the power of Christ may dwell in me. Therefore I am well content with
weaknesses, with insults, with distresses, with persecutions, with
difficulties, for Christ's sake; for when I am weak, then I am strong"
(vv. 9--10). That's it! He got it too. And he went with it for the
rest of his days.

When you and I boast of our strengths, we get the credit, and we keep
going under our own head of steam. But when we boast in what He is
doing in the midst of our brokenness, inability, and inadequacy,
Christcomes to the front. His strength comes to our rescue. He is honored.

Don't miss that point. The very things we dread and run from in our
lives are precisely what brought contentment to Paul. Look at the
list: I am content when I lose. I am content when I am weak. I am content
with insults. I am content when I'm slandered. I am content in
distresses. I am content with persecutions. I am content with
difficulties and pressures that are so tight I can hardly turn around.
Why? "Because when I am weak then I'm strong."  Knowing that
brought the apostle, ablaze with the flaming oracles of heaven, to his
knees. What a way to live your life---content in everything---knowing
that divine strength comes when human weakness is evident.

That's what gave the man of grace true grit. It will do the same for

Excerpted from Charles R. Swindoll, Great Days with the Great Lives

Boy, some days I feel like I have a long way to go.  My human nature and my immaturity gets in the way... I feel compelled by what Paul learns to hold tightly to in his life - to be content no matter what the circumstances.  I feel in this American - gotta have it now - not content with anything -culture we live in feeds the frenzy of dissatisfaction about our personal, physical, and even spiritual life.  Somedays, I truly want to go live on an island to detox from all of it...

Sorry, got off on a tangent...Back to Jack...He's been keeping busy. Its been a good thing. Since, I have found new ways to distract him so he does not get frustrated with not being able to walk.  He has taken it pretty well so far, and from what i have seen - he is not too keen on putting any weight on his Right leg for now. (and he is not really supposed to).  He is doing a lot of kneeling and crawling.  We have received  overwhelming support from our friends and family with things to do for jack.  From books to play dough to puzzles.  I am starting to feel like I am running a pre-school with color time, pretend play time, learning letters, numbers and words. It makes me sad that Jack is truly not my baby and learning so very much!   Here are some pictures of this past week!

"No- Line all the cars up by COLOR mommy...come on...!!"

Mommy says I have to keep my foot propped up while I eat... I like this "TV-tray" idea...I could get used to this....

Stocked up on essentials - snack mix, GOLDFISH and cookies!

A nice surprise visit from our former neighbors :)  Jack warmed up to them just when they had to leave... of course...

Robert, Jack, John

Our favorite new book!  This is the best!  Thanks Mrs. Kramer!!

Tuesday, February 7, 2012

1 week post surgery

Today marks one week since Jack's surgery. I can't believe time seems to have gone by quickly!  Jack has continued to do well, he has found his own ways of scooting around on his bottom and he is getting a little daring, starting to kneel. I have caught him a few times attempting to 'stand' and have to encourage him to sit down.  He continues to sleep well, and is relatively pain free!  Sunday night, James and I were watching the Super bowl when I noticed Jack was actively scratching at his bandaged leg.  He has been complaining over the last week that his leg is "itchy" and so I just thought it was hot, or his leg was probably healing.  All of a sudden, as he was sitting on my lap, the whole bandage came off!  Needless to say, I was not ready to see his stump in such uncontrolled circumstances (it was supposed to be in the doctors office a week from now, when they could change the dressing..) I yelled "Oh, MY"  and then jack got scared and started crying.  Part of me knew what it might look like, but part of me didn't.  I was so used to seeing his foot there - it was a drastic change.  I tried to put my 'calm nurse face' on but his hysteria and my mommy sensitivity side kicked in... and we all started crying! I noticed his entire leg was covered in a rash.  No wonder he'd been 'itchy' - poor Jack.   James- the only calm one- called the surgeon on call that night ( i am sure they enjoyed getting a phone call in the middle of the Super Bowl...).  The surgeon concluded Jack probably had an allergic reaction to the hibiclens (special anti-microbial cleaner) they used during surgery.  He suggested cleaning the entire leg with soapy water, applying hydrocortizone, then re-dressing it with clean gauze and ace-wrap and giving him a dose of benadryl.   Needless to say, we had no supplies in the house so off James went to walgreens to get all the stuff, while I calmed myself, then Jack.  We were successful in re-applying the dressing and off to bed Jack went. Phew that's done! - so I thought... 5:30am came and Jack started crying.  I walked into his room only to find him waving his stump in the air saying "shoe came off! shoe came off!" (Jack seems to think his bandage is a permanent shoe...)   Ugh! I suppose I didn't wrap the ace wrap tight enough.  So we started our morning early with a new bandage and very tired mommy! 

Jack's been keeping busy with some new books and new cars.  I can tell that the next few weeks will be long for him (and for me) as we count down the days until he gets fitted for his new leg and can walk again!  We continue to go on our daily walks to get some fresh air, change the scenery and give me some sanity!

Here's some pictures from surgery day and over the past week...
Day of surgery - 6:00am waiting to get checked in...
Recovery room, not yet awake...

Resting comfortably in recovery room... holding our monkey (they took monkey back for "surgery" too...;)
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Play room at the hospital...  
1st official outing - walking the bridge!! It was a beautiful day 75 degrees!

Mommy got a little ambitious and let Jack swing for a few minutes...

Some of our new books!!!

Friday, February 3, 2012

Joy in the Morning- Surgery update

 "My weeping remained only for a night, but rejoicing comes in the morning"  Psalm 30:5

The dawn of the morning approached as we awoke to take Jack for surgery at 4:30am to be at the hospital by 5:45.  We drove to the hospital quietly, but I felt a tremendous peace and strangely enough - Joy.  Jack was still in his Elmo pj's, as I didn't see any reason to change his clothes.  We all settled into the pre-op childrens area where Dr. Mooney and the anesthesiologist came to talk to us about the surgery.   Jack was happy as ever, playing with all the toys his heart could desire.  It was a nice distraction.  They gave him some medicine 10 min before they took him back for surgery.  It really made the separation nice for us, no crying or screaming or calling out for 'mommy'.  I had a great sense of peace.  James and I quietly held hands as we left the to go to the waiting room.  Surgery took 1.5 hours and we were able to see Jack in recovery.  He rested very comfortably in recovery, and true to Jack form as he was waking up he asked for his 'warm milk' (yes, i give my son a warm milk latte every do what you gotta do..).  The nurse laughed and said we'd better start with clear liquids.

As we moved to the floor, Jack was very uncomfortable and rightfully so.  He was also probably more fully aware he was not at home, and in a different scary place with beeps, lights, and unfamiliar people.  It took a few hours before we could make him comfortable with the right combination of medicine.  By the early evening, he was beginning to have an appetite and ate a few pieces of chicken and fruit.  He slept for 3 hour incriminates at night, only requiring Tylenol with codine every 4 hours.  James slept with Jack in the tiny twin hospital bed, and I lay awake on the pull out couch with my fluffy pillow from home. ( I'm convinced James could sleep on a tree branch 30 feet in the air and say he was fully rested.)  When the surgeons told us we could be discarged that next day at their 6:30am rounding, I eagerly jumped at the chance to go home to be in my own bed.

We left the hospital by 9:00 am and were home.  Jack, James and I napped for 3 hours. And then, Jack has been fine... just fine.  He has required no pain meds, slept all through the night, and acts as if nothing ever phased him. The nurse in me expected the very worst.  I was more than surprised.  The only thing that breaks my heart, is he knows something is different and is frustrated he can't get around like he used to (he was walking pretty well/ almost running with his brace on!) He has complained that his "shoe too tight" which probably means he feels the throbbing from all the swelling.  It's amazing how he has figured out how to scoot around with his leg in the air or crawl on his belly!   A part of me was scared of the unknown, and still is...I won't deny that. I am so thankful for the spring like temperatures to allow us to go outside for nice long walks - it is essential for my mental well-being, and for Jack's.  I was a little worried about having his surgery in winter - thinking we'd be stuck inside because it was too cold...Boy have I been wrong about everything! (and that's just fine...)

Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal.  - 2 Corinthians 4:16

I am not sad for Jack. I don't feel sorry for him.  I don't pitty him.  I am eager and hopeful.  I am learning to allow the Lords plan to prevail - and not mine for Jack.   Though I endure human doubts, worry and anxiety about him - I am being renewed by ability to relinquish that which I can not control easier than I ever have in the past - and have peace.  True peace.

Monday, January 30, 2012

Dark before the dawn

Today, feels like the dark before the dawn.  I love the lyrics to "shake it out" by florence and the machines...

And I've been fool and I've been blind
  I can never leave the past behind  
I can see no way, I can see no way  
I'm always dragging that horse around
All of his questions, such a mournful sound
Tonight I'm gonna bury that horse in the ground
'Cause I like to keep my issues drawn  
It's always darkest before the dawn

Shake it out
Shake it out
It's hard to dance with the Devil on your back
So, shake him off...

I eagerly await the dawn of tomorrow...but before then, I'll trust my Great Shepard to walk through this valley with Me, James and Jack...

A great co-worker and her chruch made a "Prayer quilt" for are some pictures.  I also wrote jack a little letter in his "Birthday Book" (A book I started when he was born for james and I to write him a letter on his birthday instead of a card ...)  I also made an impression of his footprints in plaster.  It turned out better than I had expected!  

Thank you for walking through this journey with us!

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