One "Hip" Momma

i.love.this

2010-02-24T23:56:00.003-07:00

I am starting to have a crush on YouTube. I resisted, I tried ... but when it comes to amazing videos like this one ... I have a crush on YouTube.

Mom 2.0: A Defining Moment

To fellow Momma's ... enjoy! May your day be beautiful.

xo,

Steph

gratitude challenge day 7

2010-02-14T22:07:00.003-07:00

One picture. One specific moment that makes me feel grateful. How can I possibly choose just one?

Today is not only Valentine’s Day. It is also National Congenital Heart Defects Awareness Day.

For this full day (week) to bring awareness to something I am passionate about … I am incredibly grateful … this is what led me to my picture for Day 7.

Our sweet Nannie (little did we know it) was born with an Atrial Septal Defect.

For many parents this means nothing. For us, however, it was a diagnosis that changed our lives. A diagnosis that literally threw us into the overwhelming world of cardiologists, oxygen saturations, repeat pneumonias, failure to thrive and open heart surgery. Into a world of words that needed medical dictionaries to understand, knowledge of the human heart that equals that of surgeons ~ how it works, how it can fail …. how it was failing. Into a world of emotions that no parent should have to face, have to fight, have to believe and hope will not become their reality.

The picture I chose is the last picture we took of our sweet Nannie before I carried her down the hall, held her while she fell asleep and handed her over to a room full of people we needed to have complete faith in. Some we had met the day before, others we had never met. Within moments they would stop our sweet daughters heart in order to make her better... they would literally hold her small heart in their hands.

This picture, for me, is a reminder for what we have overcome with sweet Nannie. It reminds me how incredibly loved we are, how much we have to offer others with our experience, how incredibly grateful we are for our surgeon who helped heal Nannies heart. Who helped heal Nannies heart so she can be here, today, so she can celebrate Valentine’s Day with us, so she can live.

Grateful.

xo,

Steph

Let's do the time warp .... AGAIN !!

2010-02-08T11:36:00.005-07:00

What in the world ?

How does this happen ... one minute it's October and before I even realize ~ we are in f.e.b.r.u.a.r.y !!

Time that has moved so, so slow before is now gone (and sadly, usually before I am able to finish my coffee!).

I never realized how much Jackjack's casts kept us homebound, how time "stood still". Unable to sit or climb like other children his age, we hung out together at home where he was able to sit happily in his chair and "explore" as he should. I am so, so grateful for that time with him, time when I could focus just on him.

Now that we have freedom that we really never had (or that I thought we never had) ... time is disappearing! Together we have a full schedule which gets even busier once Nannie & Bennie get home. Jackjack and I absolutely love it Finally able to go for a ride on the sled, play freely with other children, climb, jump and (almost) run ... he smiles ear to ear the entire time.

I am grateful.

I, very sadly, fell off the Gratitude Challenge wagon ... hard ! Today, though, is the day I re-start and will finish.

Besides ... what better time to stop and take notice, appreciate all of our gifts than when time seems to be going way too fast ?!

Won't you join me ? Post to your blog, facebook and/or in our comments and share, proudly, what you are "greatful" for.

xo,

Steph

gratitude challenge ... day 2 ...

2009-10-23T15:35:00.003-06:00

www.gratitudechallenge.com

Day 2: Use the alphabet as a fun and quick format for making a list of things for which you are grateful. Share this list with your social network through email, a blog post or a Facebook or MySpace page.

*****

OkeeDoke, here comes mine …

A ~ A roof over our heads

B ~ Ben … our oldest child

C ~ Cardiac surgeons …our daughter would not be here today if it wasn’t for ours

D ~ Dancing ... not many things can turn my frown upside down as quick

E ~ Elderly ... their knowledge, their stories

F ~ Family… there are times when I forget how truly lucky I am

G ~ Girlfriends ... love them, couldn't do many things without them

H ~ Hannah … our middle child

I ~ “I love you" … I never, ever get tired of those three magic words

J ~ Jack … our littlest child

K ~ Kisses ... means I am loved

L ~ Laughter … means we are happy and healthy

M ~ Music ... reminds me to relax

N ~ New babies ... so full of promise and innocence ... a reminder to enjoy the little things

O ~ Orthopedic surgeons …. without, Jack would not know the joy of walking

P ~ Past … without my past I would not be who I am today

Q ~ Quilts … I love their stories, their histories, the love that is/was put into them

R ~ Rich … my sweet hubby

S ~ Sunsets … remind me to slow down and enjoy the moment

T ~ Table … for the great times we’ve had around ours

U ~ Unbaked chocolate chip cookie dough … ‘nough said J

V ~ Vino …. I have had many amazing talks with girlfriends over a glass of wine

W ~ Waves … the change & treasures they bring with them

X ~ Xray … without, Jack’s hip dysplasia would have taken longer to diagnose

Y ~ Yoga … keeps me grounded and peaceful

Z ~ Zoo … we have an amazing zoo and many happy days there

What is on your list ??

XO,

Steph

take note. give thanks. do you dare?

2009-10-15T12:06:00.004-06:00

Lately I have been allowing my feeling(s) of being overwhelmed to take over. I have allowed them to work their way into almost everything I do.

Being a Mom to three amazing, busy children is a gift and I have forgotten to enjoy all that it is. I have forgotten to enjoy every smile, every cry, every laugh, every hug ... every occasion to celebrate, big and small.

Today, I start. Today, do you?

Sign the pledge, join me today.

XO,

Steph

at least it's not the living room

2009-10-12T11:12:00.000-06:00

I have found that creating a blog that reflects who I am is a work in progress .... just like me.

I know that I will drive my sweet hubby around the bend this week as I re-arrange, hopefully you will stick with us and return to see the *ahem* final edition.

At least it's not the living room this time ... right honey ?

XO,

Steph

Wordless Wednesday - Mother's Love

2009-09-16T11:14:00.000-06:00

For more Wordless Wednesday's go here :)

XO,

Steph

Just Two Little Words

2009-09-15T08:47:00.001-06:00

Just two little words ~ Don’t Worry ~ so simple, yet so full of meaning(s).

Don’t worry … does that mean I should ?

Don’t worry … does that mean honest, everything will be all right?

Don’t worry … does that mean just trust, have faith, believe?

Jackjack’s post pelvic osteotomy appointment was yesterday ~~and despite his very loud and sad reaction that made our amazing surgeon feel very, very bad, and every child waiting to see her very, very nervous~~ it sounds like everything is okay. Everything looks good, see you in two months, keep letting him explore as much as he’s able, he still has a long road ahead of him…

Nope, don’t worry about his limp.

Nope, don’t worry about his left foot being on a 90 degree angle to his right.

Nope, don’t worry about his left leg being almost an inch longer.

Nope, don’t worry that we didn’t do an xray “just to check”.

We’ll watch, and we’ll wait and we’ll see … see you in two months, don’t worry.

Ummmmmhhmmm … okay?!

And yet, with just two little words, we have a choice. These two little words give us option(s).

Don’t worry, be happy.

Don’t worry, it is out of your control.

Don’t worry, celebrate every new moment.

Yes, celebrate that your child has overcome challenges that many have not with courage and smiles.

Yes, celebrate every new step your child is taking, even if not entirely “on his own”.

Yes, celebrate that we live in a country with such amazing medical care.

Yes, celebrate that you have the love and support to make it through.

Yes, celebrate.

At this moment, I choose to “just keep swimming”, (we may have watched Finding Nemo more than once over the last year!) due to two very sweet words …

“Don’t worry”

What are you choosing today?

XO,

Steph

Wordless Wednesday - 1st Swing after 13 months casted & braced !!

2009-09-09T09:27:00.000-06:00

XO,

Steph

We Have Survived

2009-09-08T12:22:00.000-06:00

We have survived & celebrated every moment of ...

A very special first birthday,

joined with a very special (much older) birthday.

Monkeys in trees,

monkeys off to school.

Many, many, long, slow, walks with friends who are "Auntie(s)",

and with Aunties who are Aunties.

Oodles of kiss love,

of puppy love,

of campfire love.

Yes, we have survived and celebrated!

The cupcakes however,

did not.

XO,

Steph

And the squeak goes on ....

2009-08-25T15:12:00.000-06:00

Jackjack continues to amaze us every day !!

His surgery on Friday (to have pins removed from his hip after a pelvic osteotomy done May 1) was the "easiest" one yet. He had no allergic reaction at all, which is both very, very good and not so very good, as we still don't know what caused such a scary reaction after his osteotomy.

Having a child need surgery, whether it's 1 or multiple, is scary. Whether it's open heart surgery (which we've been dealt, as well) or ear tubes ... it is scary. The last couple of surgeries Jackjack needed, I had started to almost be immune to the fear I had felt previously and that scared me too. This surgery though, I was scared ... very scared. Not knowing what caused his allergic reaction and knowing that Dr. Joughin was worried as well, scared me. When we were taken into the holding room though, I felt calm, everything would be all right. Dr. Carter, who had helped Jackjack so, so much our last stay recognized him, came, knelt down next to him, and started playing with him. At that moment, when she recognized him, knew who he was, knew who we were, I knew, Jack would be more than all right. Dr. Carter was able to be in with Jack throughout his surgery and watch over him as she had previously. I knew he would be all right.

We are now 4 days post surgery and Jackjack is doing fantastic. He has some local pain and is dragging his left leg a bit more than he has, but he has needed no pain medication since Saturday .... he is doing fantastic !! We go back to see Dr. Joughin after her much deserved holiday in 2 weeks to see how his hip is doing and until then ..... the squeak goes on !!

XO,

Steph

We now have a time ..

2009-08-20T13:52:00.001-06:00

I'm never sure if I should feel blessed or sad that they know Jackjack by name okay, yes, and sight .... although with his crazy head of red he can be hard to forget! They are looking forward to seeing us "no later than" 6:30 am. Jackjack will be first case again as his surgery is scheduled to start at 7:40. We have no idea how long it will be as it is partially dependent on his reaction to the anaesthetic and whether or not he has bone growth over the head of the pins.

I'll try & keep my tweets as up to date as I can from my phone & will be able to post a more detailed "How's Jackjack" as soon as he's in a room. Hoping this will be his last surgery for a very, very long time.

xo,

Steph

Then You Stand

2009-08-17T13:57:00.001-06:00

Jackjack’s xray looks fabulous! This was his 6 week post, post surgery appointment after his Salter Osteotomy May 1^st. His incisions look incredible and when looking at his xray you can hardly see where his “old” bone ends and where his “new” bone has been inserted ….. it’s amazing! The big old ugly pins are still in place but are coming out very, very soon.

He has started pulling up to stand, is cruising around furniture and walking while holding onto fingers. He is absolutely loving the new experience of climbing onto everything he can & grins ear to ear when you ask him to get down! His favourite over the last couple weeks, by far, is swinging ~ he absolutely loves it!

All of his hard work looks like it’s helping the muscle damage to his thigh (woohoo!) and the nerve damage seems to be getting a bit better as well. Putting pants on seems to be easier on him but drying his leg after a bath and putting cream on still need to be done very, very gently.

We learned last week that Jackjack’s last surgery has been bumped up from November ….. to this Friday, August 21^st!

This ~~should be~~ will be the last surgery he needs to repair his hip dysplasia. I have ~~butterflies~~ birds in my belly whenever I try to prepare myself for this surgery due to the reaction he had after his pelvic osteotomy in May. Our sweet boy. We had discussed with Dr. “J” the option of leaving the pins in place but decided, due to the high possibility of needing a hip replacement, to have them removed. This was hard, really hard, yet we know that this is the right decision for Jack.

Whenever I am experiencing a life challenge there seems to be a song that just fits, that brings me strength and during Jackjack’s journey it has been Stand by Rascall Flatts …

On your knees you look up

Decide you’ve had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, yeah then you stand

Please keep Jackjack in your prayers this week. That he stays healthy, well rested and that his little body is able to handle this last surgery.

XO,

Steph

Because Ketchup is good on anything

2009-08-17T11:28:00.001-06:00

'Specially ….

Getting sand in places you didn't think possible,

Beautiful days on the beach,

Trying new things with fabulous friends,

Playing games with fabulous friends,

Fabulous friends making Jackjack's year by...

taking him for "weeeeeeeeeeeee"'s on the boat,

and getting the train to honk!

Knocking four top teeth loose & the fat lip that goes with it,

Swinging,

Hanging out,

Getting better at standing "independently",

Being silly,

laughing at ourselves (okay just me!),

Celebrating 9 amazing years,

Celebrating exciting years to come,

We can't wait Becca & "Uncle" Rory!!

XO,

Steph

The long and winding road

2009-08-06T11:23:00.000-06:00

I’ve been hesitant to post lately for many reasons.

My original intention for our blog was as an outlet for my thoughts, a record of all the challenges our children have survived, a letter of love (of sorts) so that, one day, they can be as proud of themselves as we are. Now, amazingly enough, having many readers from our hip community, wanting to be encouraging and supportive with Jackjack’s story is hard … his challenges are at the extreme end of hip dysplasia and, honestly, feel incredibly long and not always positive. I spent many, many hours during our two-week restful (and much needed) holiday searching my soul about this. How do I be supportive to others on the same journey, while being honest to our reality and how I feel, how Jackjack feels, how we, as a family, feel. The answer I kept returning to …. you need to keep writing, to be honest, to be yourself.

Reflecting on the start of our hip journey, I clearly remember wanting, needing to know how other families “do” this, how they are able to handle so many up and downs, what is this journey honestly like. Yet, now that we have been on this road so long, I realize that every child has a different story, a different outcome, but the one constant is the comfort knowing that there is a sisterhood, a family, who understands, who has walked down the same long, windy road and ended at a beautiful view with, grace, strength, and unwavering faith.

Starting (again) today, our journey will be shared, hopefully with ongoing strength, love and faith, for not only our family and friends but as an encouragement to our hip family as well.

XO,

Steph

You've Come a Long Way Baby :)

2009-06-09T14:56:00.000-06:00

chubby legs

April, 2008

May 29, 2008

July 11, 2008

August 22, 2008

September 29, 2008

May 1, 2009

TODAY

It's tough being "free" :)

XO,

Steph

* Poor Jackjack has/is having a hard time adjusting & so I am a wee bit sleep deprived (but still over the moon!) I will post his Cast Off Day story..... as soon as I can have a little snooze XXOO

This Time Tomorrow ...

2009-06-08T14:44:00.000-06:00

Jackjack will be free of all casts & braces ..... free !!

Free to finally...

learn to pull up, walk & run, sit up to play, ride his trike,

chase his brother, sister (or both), roll over by himself in bed,

sit in his very own car seat, fit in his very own stroller,

wear clothes below his waist,

sit up at the table to eat meals with his family,

feel a full on hug without plaster or metal in the way.

But how do we really feel about this happening??

Whoever said a picture is worth a thousand words is a genius !

XO,

Steph

** no children in hip spica casts were injured during (or after) this picture was taken ;)

How ....

2009-06-07T12:40:00.000-06:00

How does this happen .... I blink & it's next month!! Where have I been .... what has been keeping me so busy? As I think about it, it may have been the ...

56 loads of laundry

3 thunderstorms & 1 snowstorm (seriously)

1 faraway school trip

too many repeats of the itsy bitsy spider to count

out of town guests, in town guests, impromptu guests

1 dance recital

1 dinner out

3 sleepovers

2 gardens started, 1 garden finished

3 trips to Children's for appointments

12 lacrosse games, twice as many lacrosse practices

bring a friend to tap, bring a friend to dinner

sitting on the deck enjoying a snack

sitting on the deck enjoying a quiet evening

learning to crawl

learning to stand

& through it all feeling incredibly, incredibly blessed.

XO,

Steph

2009-05-19T10:56:00.000-06:00

This is not the email you want to read before going out for a walk ....

The Bears are Back! There have been two bear sightings within the Townsite on the weekend.

Be aware of your surroundings.

I think we'll stay in today & eat an early lunch before heading to the hospital!

Hannie's appointment with Rheumatology went exceptionally well Friday! Her results came back normal & they feel that, at this time, there is no activity & will hopefully never be!! Unless something is dramatically different with her pulmonary function test in June, I am thinking (as are her many, many Dr.'s) we can just chalk this up to Hannie having a sensitive system (not unlike her Momma ~ lucky girl) & catching a virus that was in love with it's "host".

Jackjack is doing better & has been enjoying some time outside in the hammock watching Mom & Dad work in the yard! He's still unable to sleep longer & wakes to be rolled but is able to drift back to sleep. We have moved him into our bed & he seems more comfy, Momma is not as tired .... that I can guarantee !!

We are off to his surgical follow-up with ortho this afternoon & I have more parts crossed than I ever thought possible (okay .... pre-children maybe) for good news. I'm anxious to see that xray & to hear that all looks great !!

"GROW, BONE, GROW"

xo,

Steph

a healing hip & a broken heart ....

2009-05-14T13:27:00.000-06:00

I am so in love with this sweet face ... aren't you ?!?!

Jackjack has continued to do well (?) this week .... I use the (?) because he seems to be healing well, his incisions look clean, his swelling is gone & his pain is definitely better, but he is sad & not quite back to being himself.

He wants to "go, go, go" & tries, but his wee right leg that hasn't been free to build muscle in over a year is, basically, lost. He's not quite sure yet what to do & is not strong enough yet to do what he knows he wants to do. He has figured out how to scooch a few feet (with great effort, I might add) & then just looks at us with his big baby blues, drops his forehead on his hands & lets out the saddest sobs ... it just breaks my heart. That is, almost as much as the "MeMa .... I stuck, I stuck !" I get .... yup, complete with tears.

I am sure that being able to get a full nights sleep would help him but he's finding it hard to sleep. We have figured out how to prop him so he can sleep on his tummy but he wakes every couple hours asking for "1, 2, 3", which had been our way of making rolling "fun" whenever he was casted. We would rock him side to side while counting "1, 2, 3" & flip him onto his tummy by his leg .... always getting giggles !! If I go in, turn him over & give him kisses he will go back to sleep but it's still not quite the same as a good deep sleep .... poor dude.

We have been heading outside for a long walk in the mornings & riding his "bike" to get the mail later in the afternoon but I wish I could do more for him. We have his first follow-up appointment tomorrow with Dr. Brindle in general surgery & we go back to see Dr. Jaughin on Tuesday.

Hannie had tests done for rheumatology last month during the great quest to find out what is happening in her sweet body to make her feel so horrible. The plan was that they would call only if her bloodwork returned with abnormal results. I had been quietly celebrating, as we hadn't heard anything .... but we got the call ... today. We go in .... tomorrow. Please keep Hannie in your prayers tonight ~ that whatever we find out tomorrow will help improve her health, that a diagnosis finally be made, & that whatever it is, we are able to make the best decisions for her treatment.

Just when we thought we were "in the clear" for awhile ... giggle !! Besides, you were getting bored reading just regular old day to day life stuff ~ right ?!?

XO,

Steph

ps ~ Thank you so, so much sweet "Brynnie" for taking such an awesome picture of Jackjack ~ it's my new fave !!!

Spoiled ... rotten .... again

2009-05-11T13:01:00.000-06:00

Yesterday was full of all that I love. Brunch, made by loving sisters & brought out to us, oodles of family, sunshine, coffee & children in bed, a couch nap while listening to giggling coming from outside, new Birkenstocks & a new book …. mmmmmm Heavenly !!

I had been looking for something special for all of the amazing Momma’s in my life & a card that Becca (one of my "baby" sisters & her fianceeeee) gifted me with, says it all!!

Motherhood

Motherhood is not for sissies.

Motherhood is not for women with weak stomachs,

strict routines,or wall-to-wall white carpeting.

Motherhood is not for women

unable to juggle three things at once,

read between the lines, or face fear on a regular basis.

Motherhood is not for women

too quick to use the word “impossible”,

or too hesitant to say “yes, you can”.

Motherhood is not for women

who refuse to believe in miracles,

or tomorrows, or themselves.

Motherhood is for

the caring and courageous women

who make a difference in the lives they touch –

women just like you.

My wish is that you are reminded every day that you are all amazing women! I am so, so blessed to have you all in my life. Happy Mother’s Day.

XO,

Steph

****************

Hi Auntie(s),

I’m going to try & help you post ….. now that you let me know you’re trying ;)

Right below this secret little tutorial is the word “COMMENT”. Do you see it? Good, give it a click. It will bring up a new “page” that, on the right hand side says “Leave your comment”. Type anything you like in the box below it & don’t forget to let me know which extra special person is writing to me (there are a couple of you who’ve asked!)

Enter those crazy letters that never, ever make sense in the box right below it, that says “WORD VERIFICATION”.

When you have left me a short ~~novel~~ note, click on the circle to the left of Name/URL (underneath the orange “Choose an identity”). Enter your name & ignore the URL.

Click the orange “PUBLISH YOUR COMMENT” button & voila ~ you’ve just made my day!!

Love you’s !

I'm blaming it on lack of sleep

2009-05-08T17:40:00.000-06:00

Jackjack is doing fabulous! He's sleeping well & enjoying just hangin' out & layin' low .... with yummy cookies left by a very special lady!!

Jackjack loves Thomas & I was heartbroken to know that Thomas was here while Jackjack was in the hospital. That was until I found out that he's here this weekend as well!! Although online tickets are sold out, they do have a few available at the door!

I got all the information I needed, Jackjack has had 2 fabulous days & nights, he is in between waking & needing a nap, he is down to just needing Tylenol for pain control, it's a cool day outside .... sounds perfect, doesn't it??

It got even better when we got there & the parking lost wasn't busy, there wasn't a big line to get in, Jackjack handled the drive in well & was still very happy.

I was very, very proud of the pretty lady taking admissions. She didn't laugh at me like "hipdaddy" did, when she very gently said ...

"Thomas isn't here until tomorrow."

It's the lack of sleep .... clearly!

XO,

Steph

Full Circle .... almost

2009-05-05T16:34:00.000-06:00

I am over the moon to finally be finishing this update from HOME !!! Jackjack was released today & is comfortable, if not moved too much. My brain is feeling pretty scrambled so I am thinking of doing a "what happened" in a couple of parts .... below is the update I've been working on since I originally said I would post (I have no idea what day it is today let alone what day I started promising!).

************

Replaying the days since Friday over, in my head, is scary. Now that I have had a bit of time to sit (& Jack be comfortable), I realize, fully, how scary this has been. I realize how close we were to spending time in the ICU.

The way Jack came out of surgery Friday was reassuring. Both surgeries went as planned & with excellent results. He was comfortable Friday night, slept well, woke happy & without pain.

I keep trying to remember if something specific happened around 2:00 on Saturday afternoon & in fact I know I am not the only one who is trying to remember. By 3:00 Saturday, Jack had absolutely no pain control. It was as though someone had flipped a switch. He went from resting to screaming, crying out "ow me, ow me" over & over. From lying sweetly still to writhing, arching his back, wringing his hands or flailing his arms. Picking him up hurt him even more. No matter what they tried he continued, without change, without stop, without relief until he was basically put to sleep. We tried to comfort him but couldn't, no matter what we tried, knowing he was in pain was hard but being unable to comfort him at all was heart-breaking.

Jack had also started to retain water & stop producing urine, which ended up in ortho having to cut his cast in half to allow him room to breathe. Shortly after an anti-inflammatory (Toradol) & before Morphine were added, Jack's eyes & eyelids started to swell. Not swelling a little bit, but swelling to the point of alarming the Dr.'s (& there were many coming & going). By midnight they had completely swelled shut & his eyeballs looked like tapioca .... thousands of little fluid bubbles. We are still unsure if this was an allergic reaction or his body's reaction to the stress. No one can figure this out .... it was just so, so strange.

Although now that we have had even more time to think about it ~ there was one component to the anaesthetic during surgery that was changed & held constant through both trips to the OR this weekend. Again, after replacing his cast on Sunday, his eyes swelled shut .... luckily not as dramatically as Saturday evening. I will be requesting that his anaesthetic return to the one that worked his 4 trips into the OR previously!

We had started in a double room but were moved around 9 pm Saturday into a private room, next to the nursing station, with 1 on 1 nursing. Xray and ultrasound came up to the room to make sure that nothing surgical had happened to be causing Jack's pain. Both returned normal, all pins were still in place & although his testicle showed swelling, it was still in place & not twisted. It was finally Dr. Carter (we had exhausted every other member of the pain management team) who came up right after a full day of surgery (9:00pm), after her shift was done & stayed with us until Jack was basically anesthetized (12:30am). Now that I think of the reason(s) she stayed, it scares me & yet makes me incredibly grateful at the same time. The medications Jack needed by that time (& the amounts for that matter) were dangerous & held a high possibility of stopping his breathing... but they worked, keeping him comfortable for periods of time.

There were so, so many things going "wrong" with his body that it is hard, still, to tell what exactly happened. One of the medications, Ketamine, is used as a sedative when setting bones or putting drainage tubes in, was the one that eventually kept Jack asleep. He was at the highest dose he could be on, without being in the ICU & every time we tried to lower his dosage he would wake in pain again & we would be back at square one. This continued through Saturday night & Sunday morning.

************

I am going to enjoy my first night home with my loves & continue the rest of Jack's saga over the next few days.

Thank you for hanging in with us (AGAIN!!)

XO,

A much relieved Steph

2009-05-02T22:24:00.001-06:00

Today has been such a hard day we have no words to even begin to explain how we are feeling. Jackjack's epidural & pain meds stopped working suddenly at 2:30 this afternoon. Everyone has been trying to figure out why, but most importantly to get him comfortable. He is incredibly swollen & barely looks like our sweet boy.

Xray was just in & the good news is, his pins are still in the right place & nothing was out of the ordinary with either hip! His cast had to be cut open to help reduce some of the pain from swelling so he will be taken back into the OR sometime Monday for a new cast to be put on.

Ultrasound is here, as I type, to make sure everything is still okay with his "shy guy". We have been blessed with an amazing team of nurses, Dr.'s & anesthetists today .... one who has pulled out all of the stops & finally got sweet Jack comfortable & has not left the unit ~ due to the amount & combinations of meds it took to get him to this point.

Please keep Jackjack in your prayers & thoughts tonight & through the day tomorrow.

XO,
Steph

Through to the other side ...

2009-05-01T17:31:00.000-06:00

**UPDATE**

Jackjack has had a very, very peaceful night which is exactly what his poor little body needs! When changing his diaper & cleaning him up last night, rolling him caused the pressure from his cast to release & his incision started to bleed heavier. They ended up trimming his cast so a pressure bandage could be placed to help stop the bleeding & this morning it looks like it has started to work :)

His "gravol" has definately worn off during the night & we just got him cleaned up again, given him another dose & he's resting .... sweet boy. I'm praying today will be easier on his little body, that he is able to rest well, start healing.

You know, I honestly, thought I had let go of the anger I originally felt when Jackjack was diagnosed but it returned last night. My anger isn't for me but for Jack ... he has had such a long year & has been nothing but a happy, giggly, loving, little fighter. Knowing that all of this could have been avoided, knowing that this wouldn't, shouldn't be necessary makes me angry, frustrated .... so sad. This happens to so-many-children, please share Jack's story so others won't have to be sitting here, watching their child, wishing that it wasn't so. DDH is so easy to diagnose, this shouldn't happen.

I always say that if I can just make it through to the other side of this ... everything will be okay. Right now, everything is okay & I am feeling blessed to be on the other side! Jackjack is "in the zone, Sullivan", pain free, many tubies not free, & hanging in there!

Last night was the toughest "night before" we've had .... resulting in a very, very sleepy boy by the time surgery came (he didn't fight falling asleep for the first time!). Jackjack seemed to know exactly what was going on when Mommy put on her pretty hat & coat to carry him back to surgery .... he didn't want to let go of Daddy! I was able to hold & talk with him while he was falling asleep ~ I would be lost if I wasn't able to provide our sweet children with this one comfort.

Jackjack's release of his "fair weather friend" (or orchiopexy) went very well. His testicle didn't like to be overly warm, just nice and toasty, so it was easy to find, release & bring down. The little mister's "mister" looks awfully sore & swollen making his cast very tight around the diaper opening.... which has been a gift in itself, putting pressure on his incisions helping them to clot.

His innominate osteotomy went smoothly & was a success!! Dr. J is very happy with how solid his hip is & she only needed to use 2 pins (these will be removed in 6 months). Jackjack's cast is blue .... we realized, after Dr. J came to chat with us, that we didn't request a color & forgot to ask ~ I wonder why ?! His right leg is absolutely free with his cast wrapping around his waist to his armpits, around his right hip & all the way down to his chubby ankle on his left! WOOT WOOT .... I have a feeling he may not be slowed down at all with this one! His epidural will remain in tonight & they will start to wean him slowly tomorrow until he is able to do with a lower dose pain medicine. His vital signs are all stable, he has no sign of fever & has stopped being sick to his wee tummy (knock on wood!).

I am pooped beyond belief (& apologize for the state of this update but I think it makes sense?)& will lie down as soon as I can kick my sweet hubby off of my "bed" ;)

XO,

Steph

You tell him ....

2009-04-30T21:02:00.000-06:00

that this is his last “spla-spla” for 6 weeks !!!

After being freed from his last spica cast, Jackjack had trouble getting used to being in the bath. All that time with the only sensation being his cast, it was just too much for his sweet legs to feel. Now? Now we have trouble getting him out of the tub & every body of water holds the possibility of a “spla-spla” !

Surgery has been scheduled to start at 8:40 am with his orchiopexy first, followed by his innominate osteotomy. He should be in the OR for 4 – 5 hours & then we have the ~~what feels like forever~~ wait while he is in recovery. After all is okay, he will be moved into his own room & there we will hang until he is ready to come home …. anywhere from 3 to 6 days. Dr. J will insert an epidural & he’ll be slowly weaned off of it & onto additional pain meds in the 48 hours following his surgery to help manage his pain & muscle spasms.

I am feeing okay ~~at this moment~~, knowing that we have done everything, absolutely everything, in our power for his hip to heal on its own. I am feeling okay, knowing that Dr. J will be doing everything she can tomorrow. I am feeling okay, with another 6 weeks in a spica cast. I am feeling okay, knowing that this summer our sweet boy will be able to learn to w-a-l-k !! I am feeling okay, knowing that this has been a very, very long year but that soon he will be without a brace or cast!

We will be able to keep all of you, that love our sweet little man, updated before we are settled in his room …. keep an eye on the upper right hand side (above our family picture). Now that Hipdaddy is home he I can get his fancyschancy phone connected & we’ll be good to go ……. so Jackjack can be on his way to WALKING !!!

"Heal, Hip, Heal"

XO,

Steph

From down the hall

2009-04-27T11:22:00.000-06:00

While ~~hiding from my children~~ lying in bed Saturday morning, I hear ... from down the hall:

“Why don’t you guys put the rest of that candy away and come eat your bacon and eggs”

Momma lesson learned? Next time ~ I’ll close the door.

Try not to blink .....

2009-04-22T11:24:00.000-06:00

Or before you know it, your sweet baby girl will be E-I-G-H-T !!

Eight years .... today. It feels strange to read, even stranger to say.

"Eight years" Daddy said to me yesterday, shaking his head, I'm sure feeling as strange as Mommy does saying it! We were so, very excited the day you were born. As if we knew how special you would be. As if we knew what a quiet impact you would have on everyone you would meet, what an impact you would have on everyone who hears your story.

Eight years feels like a lifetime and a blink all at the same time. You are so full of life, laughter, love and energy it is hard to imagine that you were born with a broken heart. It is hard to imagine all that you have been through in eight short years. How do we put all that you mean to us into words ... you are our hope, our little heart warrior, our light, our giggles, our snuggles.

We are so very, very proud of you and love you more than, at times, we can even imagine.

XO,

Daddy and Mommy

Phone calls from weeks past ....

2009-04-21T08:52:00.001-06:00

Our phone has been very busy over the last week, week and a half with amazing news ...

1. Hannie's heart is functioning well even with a very irregular heartbeat. After reviewing the holter monitor results, Dr. G feels that it is not hanging out too low (bradycardia) or too high (tachycardia) for long enough to be causing her symptoms. We do know that after open heart surgery the need for a pacemaker may present itself in the future but for right now .... her heart is functioning well on its own and has returned to normal size :)

2. Hannie's sweat test for CF returned .... wait for it ..... N-E-G-A-T-I-V-E (WOOT! WOOT!). Hannie's result was only 16, with a positive result returning at 60. She has a repeat PFT on June 4 to see if her numbers have risen or fallen as 2 results were borderline and 1 was below. This could be a sign of something going on OR just a function of it being her first time completing a PFT. We are praying that it is just a first time result and that those numbers will go up.

3. Jackjack's innominate osteotomy has been confirmed for May 1 .... his surgery time will be another phone call right up to the 30th.

4. Jackjack's general surgeon, Dr. B (who is following him for his bowels & "boys"), called yesterday to confirm that they have been able to coordinate with his orthopedic surgeon, Dr. J & both surgeries will be done on the 1st. Jackjack has one "warm weather" testicle & one who likes to hang around (I know, but I got you to giggle!). They will release his left testicle before Dr. J continues with his hip .... which is such a relief. It is hard imagining him needing another surgery .... that would have brought him up to a total of 6 before his third birthday!

We are still waiting for Hannie's results from Dr. M, her rheumatologist but don't expect them for a few weeks. Several of the tests needed to be sent to a different lab and take awhile to return. Her energy has been steadily increasing in the afternoons & she is trying her very first full day of school today !! What will Jackjack & I do ?????

We will be praying for Stellan who is, at this very moment, having his sweet heart fixed .... will you join us? I am warning you though .... you will fall in love with his adorable face, his story and his amazing Momma !

"GROW, BONE, GROW"

xo,

Steph

two, deux, dos ....

2009-04-20T04:04:00.000-06:00

today you are two

you have grown so, so much

there are moments where I want to stop time

but just for a minute or two

to savour a laugh, a silly moment or a sweet hug

so I don't forget what a blessing the "small" things are

that make life so amazing

you have accomplished so very, very much in one year

3 closed reduction surgeries

to wearing an abduction brace full time

to learning how to move on your own

to sitting and standing and climbing

but only when you can catch Mommy by surprise

and looking incredibly proud

like you know what a challenge you have

just overcome

all while being the incredibly happy, loving,

generous, silly, brave,

beautiful, adventurous

boy you are

we love you so much Jack

and are very, very proud to

be your parents

we can't wait to see all that you accomplish this year

xo,

Mommy & Daddy

Blessed

2009-04-09T14:41:00.000-06:00

Blessed

I get kissed by the sun

Each morning

Put my feet on a hardwood floor

I get to hear my children laughing

Down the hall through the

Bedroom door

Sometimes I sit on my

Front porch swing

Just soaking up the day

I think to myself, I think to myself

This world is a beautiful place

I have been blessed

And I feel like I've found my way

I thank God for all I've been given

At the end of every day

I have been blessed

With so much more than I deserve

To be here with the ones

That love me

To love them so much it hurts

I have been blessed

Across a crowded room,

I know you know what I'm thinking

By the way I look at you

And when we're lying in the quiet and

No words have to be said

I think to myself, I think to myself

This love is a beautiful gift

When I'm singing my kids to sleep

When I feel you holding me

I know

Martina McBride

My Middle Space

2009-04-07T15:30:00.000-06:00

...this is what I have nicknamed a place in my head that I don't necessarily enjoy but it is one I find myself hanging out in this week. It is a friend of mine I visit whenever medical tests or surgeries for our children are drawing closer. It is not one of anger, sadness, guilt or confusion ..... or maybe it is, but all rolled into one quiet ball that keeps bouncing around inside my head. It is a space where I don't feel blue (entirely) but not (bright) yellow either. It is a space where I can occupy myself during the day feeling peaceful but thoughtful. It is one that routinely wakes me up when the house is sweetly quiet, only the sound of blissful sleep to be heard. It is one that doesn't respond to journalling, talking it out, being creative, praying ..... even ignoring. I decided this week to just be in it & I'm okay. I'm okay.

Hannie has a sweat test tomorrow to rule out Cystic Fibrosis. As her Momma, I feel strange about it all & maybe even a little guilty. Guilty in the fact that if it returns negative, I will be relieved but if it returns positive, I will also be relieved. We have been working so very hard to figure out what is making her physically disappear before our eyes. We want, so much, for her to be able to keep up with her friends. For her to be able to play for hours on end, to attend a full day of school ..... for her just to feel well. She has been on the upswing over the last couple of weeks but we are reminded all too often that she is still unwell.

I know, to the very tips of my toes, that I am incredibly blessed. That Hannie and Jack's health could be so much more complicated, that we are blessed to live in a city with a Children's Hospital others travel across countries and oceans to be seen at. That we have an unbelievable family, not to mention our friends who would (& do) anything for us ... many even regarding us as family..... but these are our sweet children. I knew them even before I birthed them. We did everything in our power that they arrive not only safe but healthy. And here we are ....

I think daily about why ... why not us? What am I needing to learn from these experiences? Is it to put pride aside and ask for help .... check. Is it to learn patience, compassion, strength .... check, check, check. It is to reach out to other parents in similar situations ..... check. Is it to be truthful on the "not-so-rosy" days too ...... uuuuumm hmmmm ... I'll be starting today.

"Secret Heart" by Brian Andreas

The secret is

not in your

hand

or your

eye

or your

voice,

my aunt once

told me. The

secret is in

your heart.

Of course, she said, knowing

that doesn't make it any easier.

"GROW, BONE, GROW"

XO,

Steph

HDIF or How Do I Friday

2009-04-03T09:06:00.000-06:00

My baby has just been diagnosed .... How do I do this?

I clearly remember all of the emotions and anger I felt when Jack was diagnosed. I can also remember thinking .... "Now what! What does this mean for Jack, is he going to be able to live a "normal" & active life, how are we going to do this, was this something I did while carrying my sweet boy for 9 months, why was it not found earlier ..... how did this happen?"

I had so many emotions and questions all at once, I felt incredibly overwhelmed and very scared. Once Jack was discharged and we were settled at home, I started searching. There are some amazing resources for parents with a new diagnosis of DDH. Here are a couple that not only helped me at the beginning, but continue to help, as we move onto Jack's next stage of treatment.

What is Hip Dysplasia? This is an excerpt from an article written for parents, by parents. You can find it at Ergo Baby (which, by the way, is an amazing carrier for your babe in either brace or cast). I've removed more than "the basics" to keep this post shorter :) If you would like to read the entire article please click the Ergo Baby link above or in the sidebar. I also added some links so you can see what they are talking about when it comes to the braces and surgeries.

Hip Dysplasia

Hip dysplasia, CDH for short (for congenital dysplasia of the hip), is an umbrella term for congenital or acquired false positions or disorders of the ossification of the newborn's hip joint.

The following illustrations show a normally to heavily damaged hip joint:

Illustration A: normal hip joint
Illustration B: hip joint affected by dysplasia [2]
Illustration C: hip joint affected by subluxation [3]
Illustration D: hip joint affected by subluxation [4]
Illustration E: The greater the impairment the wider (a) and higher (b) the femoral head is situated out of the joint socket or acetabulum, the more askew is the roof of the acetabulum (c) and the more blunted is its rim (d). [6]

DIAGNOSIS

The ultrasound examination of the hip helps the diagnosis. During the first four and a half months, it is very reliable and evaluates the stability of the joints in real time. From four and a half months onwards, frontal X-ray pictures confirm a potentially serious or risky diagnosis. If, even if hip dysplasia is suspected, the X-ray turns out normal, then the diagnosis can also be determined by means of other radiation examinations like MRI (magnetic resonance imaging), scintigraphy or possibly CT (computer tomography).

THERAPY

The measures available for treatment are of orthopaedic as well as of surgical character. An orthopaedic treatment is mostly the first step; changing the newborn in a position as to keep the legs apart, or using orthopaedic aids as abduction pants that spread the baby's thighs (von Rosen splint, Pavlik harness, and so on). If the diagnosis is made later, then the child is treated by means of an abduction plaster, i.e., putting the child in a cast on the affected side from foot to hip. The intention is to achieve the final ossification of the hip joint that occurs between the third and the sixth month in a position that is healthy for the hip joint. Thanks to all these aids and early detection measures, an operation (osteotomy of the pelvis and / or the femur) seldom becomes necessary.

Written by: Annika Kral (Senior Manager Research)

The greatest help to me (other than my hubby and our amazing support group of family and friends!) has been the online support group at Hip-baby. I fully recommend, even if you've been on this journey for awhile, joining. There are parents from all corners of the world, with children and diagnosis of all ages. I have made some amazing friends who I can turn to, not only when I am feeling "alone", but to help when I know they are.

It is very important, as a parent, to remember that all cases of DDH are different and that the earlier it is found, the shorter and more successful the treatment is. As a parent, diagnosis at any age is heart breaking. I do promise you though, that as hard as this journey is on you, your family and friends, your child will amaze you constantly. Celebrate all of the "little steps" .... the big ones will follow!

"GROW, BONE, GROW"

XO,

Steph

The Journey Continues

2009-03-31T19:20:00.000-06:00

I could really use a little sunshine this week (okay the coffee with Bailey's too!). It has been another roller-coaster of feelings after our Monday appointment with Dr. 'J'.

While changing Jackjack last week I noticed his legs were different lengths .... like they were when he was diagnosed, different. I also realized that over the past few weeks he had stopped pulling up to stand in his brace & would put no pressure on his left leg at all. So, being a "normal" nervous hipmomma ..... I called. The response I got?

"Oh no !! We'll see you Monday morning at 8 ~ try to have a good weekend !"

That is not what a hipmomma likes to hear from her favourite nurse and surgeon! The upward climbing news of this weeks roller-coaster ride is that Jackjack's hip has not re-dislocated! It is probably still sore from being forced "straight" during a chest xray for pneumonia. In children under 3 they tend to use a pigg-o-stat .... which seems horrible when your child is not as peaceful as the one below ;)

There is nowhere else for your legs to go & when they have been "froggy -style" for a year ~ youch! His difference in leg length is most likely from surgical stimulation. With every surgery, the hip joint is moved & adjusted which stimulates growth. With Jackjack's right hip being stable, Dr. 'J' didn't have to adjust it as much as his left. This should even out after he begins to walk & both hips have equal pressure.

Now for the screaming, stomach dropping, save me, downhill ...... Jackjack has had absolutely no new bone growth over the last three months, none. He has been scheduled for an innominate osteotomy on May 1st. It always surprises me that even when I am prepared that 'not the greatest' outcome is possible, it still throws me for a loop. I am relieved to know that we have done everything possible to encourage Jackjack's body to heal & grow as it was created to .... but I am still very, very worried about this surgery. There are so many more complications & it feels, to me, so invasive.

He will be hospitalized for about 4 days after this surgery & will have an epidural until he is able to use only iv or oral pain medications. We also need to be sure there is no infection & that the bone graft is holding. He will be back in a hip spica cast for 6 weeks (which, as I giggled with Dr. 'J', will be a piece of cake compared to the length of time he's spent in one already!). If everything goes as planned, with no complications (please!), our sweet boy should be free to learn to walk, go on a swing, ride in a regular carseat, play in the sand, the pool, the sprinkler ...... I cannot wait!! The idea of all of his "firsts' is what is keeping me strong. All of our support, is keeping me strong.

Please send happyhip thoughts to a very special boy on Thursday. He will be having his first reduction & is just beginning his journey. Please send his hipmomma big hugs ~ he will do great 'L' & amaze you both .... this I can promise !!

"GROW, BONE, GROW"

xo,

Steph

OneHipMomma Found !

2009-03-23T11:50:00.000-06:00

I really didn't mean to go missing like that! There has been much going on, frequented by trips to Children's Hospital clinics, more snow, tests, many coffees with more snow, & "freak-outs" about how-long-does-it-take-to-get-test-results!?! With more snow we were able to find a pair of snow pants that fit over Jackjack's brace. He loves playing in it, even though crawling through the deeper snow banks poses a bit of a problem .... he's not a big fan of snow up the nose!!

We decide to become parents before we fully understand all that is involved. I knew I would love my children ~ what I didn't know was that from that moment forward I would live with my heart outside my body .... watching, celebrating, feeling, enjoying, worrying, loving. *All* of this is compounded when your child is unwell.

Jackjack's journey has been joined by our sweet Hannie, who is on a new journey of her own.

When a very vibrant, healthy, busy, beautiful 7 year old loses weight, sleeps 16 hours out of 24, can't keep up with friends & is even too tired to attend school ..... one starts to worry! We have been dancing with "the system" since Christmas, rallying for tests, Dr.'s, answers .... acknowledgement. It has been time consuming & at times overwhelming, but I am praying we have some answers soon.

Jackjack has loved having her home - she ends up being an instant (aka. too tired to be unwilling) jungle gym & movie partner. One who is always willing to share her food, pillow, dolls, books and is always ready for a kiss. Besides .... she's much cuter than Momma!

Our next appointment with Dr. 'J' is April 6th. This will be "the" determining xray as to whether or not Jackjack will need an osteotomy ( The Salter osteotomy involves a cut immediately above the hip socket in the pelvic bone, with the insertion of a wedge of bone taken from the adjacent pelvis. The wedge of bone turns down the roof of the hip socket and stabilises it. It is usually held with one or two screws). She will let us know her decision at this appointment &, if needed, a date will be set. Our last appointment was almost 3 months ago & at that time the bone growth was minimal even after almost a full year of casting and full time brace. Needless to say, I have a small pit in my belly that grows a bit bigger as every week goes by.

We are continually blessed with a strong support system of friends, family & other parents who have experienced & fully understand what we are going through at Hipbaby . I cannot begin to imagine surviving any of this without!

As women & as parents we have so much to offer others with similar life experiences. I was reminded again, how much we have to share, last week on a rare trip out. Another HipMomma, who's sweet boy had just been diagnosed, approached me full of questions. I am so happy she did .... we talked non-stop for 1/2 an hour ~ blocking cart traffic no less LOL! I have thought alot about our conversation & decided that instead of a TGIF post I'd start a HDIF or .... How Do I Friday's.

With every stage of CDH comes new questions, fears & most of all "How in the world do I ...?". I'm hoping this will help, I know that this would have helped us in the beginning & even as we possibly enter another surgery! Please let me know, HipMomma's, if there is anything special I can post for you & I'll do my darndest to help ....

"GROW, BONE, GROW"

XO,

Steph

Look Who's Standing Too !!

2009-01-21T16:44:00.000-07:00

This was definitely not what I was expecting when Jackjack called to be rescued from his nap ....

& I was certainly excited for longer than he was ....

This one moment will carry me through the next 3 months with more hope than I was feeling after our last appointment.

GO, JACK, GO !!

XO,

Steph

"A long way to go" ....

2009-01-14T13:54:00.000-07:00

is what our Dr. has to say about Jackjack's hips. "A long way to go" ..... haven't we already gone a long way? I find these appointments hard, going in with guarded optimism that this will be "the" appointment where we are told his hips look great, that he is finally free to learn to walk, that he can finally be free ... period.

There is very little change from our last xray 6 weeks ago & yet there is some. The plan, for now, is to keep Jackjack in his brace full time & to return in 3 months for another xray & revision to our plan of attack.

This is Jack's xray from Monday. You can clearly see how much more developed the ball (circles on the outside edges of the xray) of his right hip is compared to his left as well as the angle of his hip socket (above the ball). The brighter white on the upper outside edge of his socket is the new growth since his very first closed reduction May 29, 2008. "A long way to go" would be the only way to put it. So we wait & hope & pray .... for bone growth, patience, & unguarded optimism.

"GROW, BONE, GROW"

XO,

Steph

What worked for us ....

2009-01-09T13:14:00.000-07:00

We belong to an amazing parent support group available through hip-babies . There are always, always questions about what works when it comes to diapering. For three of Jackjack's Spica casts we were able to use a medium "weight" incontinence pad (like Poise) tucked *completely* inside a diaper. Jackjack was over 12 months when his first Spica cast was put on, so the pad would need to be adjusted to suit your child's size and age. We did a lot of experimenting ;) The other problem is, every cast is different ... but here's what worked for us with an exceptionally tricky one that had a tear in the lining.

Step 1: Take a smaller diaper & tuck the tabs in, followed by turning it inside-out so it looks like this ...

Step 2: Now, tuck your new "liner" underneath the edges of the cast, where your child is wettest...

Step 3: Tuck a larger diaper in, underneath the edges of the cast, completely covering your "liner". If you are using poise pads, panty liners etc. your diaper will still leak if they are sticking out even a wee bit.

Step 4: I found it much easier to get a smooth tuck in the back by flipping Jackjack over onto his belly...

Step 5: Just one more step to a dry cast! I took one more diaper, with absorbent side facing in. Run it from above the top of the cast in the back, tuck in (over the liner and larger diaper) and out through to the front. This helped absorb any escapees & can be reused if it's still dry!

Now, if your hipbaby would only sleep through the night, you could sleep well, knowing the inside of your child's cast will be leak free in the morning .... no more three hour diaper changes ~ heavenly!!

"GROW, BONE, GROW"

xo, Steph

A monkey has entered the building ....

2009-01-04T14:44:00.000-07:00

This has been the chaos that we walk into, when a certain little boy is not ready to nap, & myohmy, is he proud !! I figure it takes him all of 5 minutes to undue the snuggy tuck-in he loves, unsnap EVERY snap on his jammies while undoing all velcro on his brace! I am sure that if he could 'heaveho' it over the high bar of his crib he would do that too .... little monkey!!

He has started letting us know he's becoming frustrated with having to wear his brace but will still let us put it back on him ;) Our next appointment is scheduled for January 12th where Dr. 'J' will do another xray & update our plan of attack. Jackjack's brace is really "yucky" & even falling apart, he moves so much in it, I see a new one in his future!! We would all love to see him be able to move to just night wear. He doesn't appear to be bothered by not being able to walk, but it is one of my prayers for him this year.... how exciting would that be?

We have had a fabulous holiday season full of family, friends, food and many visits ~ we feel so blessed to have so many people who love us & for us to love ! We all felt young again watching Jackjack's excitement at everything .... every light, pretty present or sound made him smile & let out an "oooooooh" ~ what a love!

Wishing you all a restful beginning to 2009. May it be a year filled with happiness, love & adventure!

"GROW, BONE, GROW"!!

xo Steph

2008-11-19T15:02:00.000-07:00

Has it really been over a month since my last update? It just doesn't seem possible, especially with 3 blessings to take care of !!

We had Jackjack's 6 week appointment on Monday & he is continuing to improve. There is some evidence of new bone growth, which is encouraging, but he still needs to wear his brace full-time for the next 2 months. He'll have another xray January 12th to check for new growth. Dr. Jaughin has "given" us 6 months to see Jackjack's bone growth greatly increased or he will need a bone graft to help it along. Dissapointing to hear but not unexpected, unfortunately.

He has made amazing leaps in his mobility over the last week though & it has been an amazing month of "firsts" ..... he was even able to ride in the grocery cart (& I'm not sure who was more excited Jackjack or Momma!!). Other firsts have been ...

for the VERY first time!! He couldn't fit with his hip spica cast but is able with his brace & he loves it. This next first is one that he (& everyone who sees it!) is very very proud of ...

His cast supported his body & rebuilding his tummy muscles has been hard work for our little trooper. But he can finally sit unaided (he's even able to control his "flop" back). Yesterday also brought another new first .... he ROLLED over!!! Once he figured out he could do it again, he rolled ..... & rolled ..... & rolled to loud cheers :)

Richie asked me to explain my FLICKR to your left .... if you click it you will be able to see many, many more pictures of our amazing children!!

GROW, BONE, GROW !!

2008-10-09T12:15:00.000-06:00

What a difference a day (or week in our case) makes. Jackjack is continuing to improve daily. He now has movement in his left knee & complete movement in his right leg !! He loves grabbing the toes on his right leg & giggles as though he's just touched the moon :)

All of his "raw spots" are healing nicely & he's actually starting to like the bath again. He has been running a fever off & on since Saturday & has lovingly re-shared his lunch & milk on both Benny & I. Everyone else is feeling fine so I'm starting to think it's his sweet body's reaction to the pain & change during the past week.

We met with Dr. Jaughin on Monday for our follow-up & his hips look great!! Both are still in position & you can now start to see new bone on the xray .... AMAZING! Jackjack will need to wear his brace full time for the next 6 weeks, we'll go in for another xray & decide what to do next :) We are so, so excited !

"GROW, BONE, GROW"

2008-10-01T20:49:00.000-06:00

We spent about 1/2 hour adjusting Jack's brace this afternoon & it has already made a big difference! Our wonderful Ortho Nurses bent some curve in both the front & back bars & made it wider from hip to hip. He has been much more comfortable & spent time happily playing & "crawling" on the floor after dinner & Hannie's tap class. This was also the first bath that he didn't scream through :) The skin on his left leg is doing much better but his little roll creases & behind his knee are still incredibly raw ... even gently rubbing cream in hurts! Our nurses were telling me that babes who were in the spica for a "regular course of treatment at 6 - 9 weeks" have pain for at least 2 weeks & with Jackjack being in his for 5 months "it will be more painful & a longer haul, but he will pull through ~ he's a trooper". We go back in Monday for an xray & brace follow-up to ensure that it has not re-dislocated.

It has been so, so hard watching him in that much pain & not being able to "fix it" like a Mommy should ~ the last 48 hours have pooped me right out ! Thank you so much for your messages & phone calls both in celebration & understanding. What does help me is knowing that Jackjack is very loved & has so many people rooting for him !!

"GROW, BONE, GROW"

Sweet dreams,

xo Steph

2008-10-01T11:32:00.000-06:00

I love this old picture of Jackjack .... pre-diagnosis, operations, casts, braces ... the unknown.

This week has been one that I wish I could restart, just to be properly prepared. This week is hard. It started with such happy optimisim & now I just want to go back to Sunday. Since having his hip spica cast removed on Monday Jackjack is not doing so well. He is in an incredible amount of pain & I'm not entirely sure how to help him anymore. I have tried everything a Mother knows & have finally placed "the" call to our Nurse. We were warned that he would be in a "bit of pain" but to give him some tylenol & he'd be fine .... "a wee bit stiff" .... but it will pass in a couple of days. Something is not right. I cannot remove his brace to change his diaper, gently rub cream on his poor dry legs or even touch his skin without him screaming in pain & the 3 short baths a day I'm supposed to be giving him ..... oh my !?!

Please keep Jackjack in your prayers & thoughts today, that his hip hasn't re-dislocated & that I am able to soothe him & reduce his pain. I will try to update as soon as I can.

*Ortho just called & they want to see him as soon as he's awake .... I'll try to update later today but Hannie has tap so it may be later tonight*

Love to you all,

xoxo S

At a loss ...

2008-09-29T20:06:00.000-06:00

Right at this very moment I don't know how to put everything I am feeling into words .... so I'll start with these :)

We started off today with Jackjack in this ....

and then they did this (AFTER an xray to make sure his hips were still in a good position) ....

and then we got to do this (yes ... I was weepy ~ he's soooo big now & soooo soft & cuddly) ...

now Jackjack is in this .....

see what I mean !?!? We go back to see Dr. "J" next Monday to make sure his hips haven't dislocated again, the brace is the right size still & to plan where we go from here .... I am pooped :) Jackjack is doing great as long as the Craig Abduction Brace is on, he is in pain when I take it off to change his diaper or give him a bath .... give him a bath ~ I love saying that, it feels like forever since he had his last one in May! His pain should lessen as the week goes on & his muscles loosen. I will get some better pictures tomorrow & post them with a much better update, I promise :)

It's the most wonderful time ... of the year

2008-09-03T14:36:00.000-06:00

I can't believe that the first day back has already come and gone! Bags packed, lunches made, forms signed & a floor that stayed clean all day .... yes, I am smiling!

Finally good news ....

2008-08-22T21:39:00.000-06:00

I honestly thought this day would be much, much further away. Our appointments since the very day Jack was diagnosed have been upsetting and frustrating .... "are we doing the right thing" was always nagging but now we know! After manipulating Jack's hip & the arthrogram to follow, Dr. Joughin finished with very good news!! There is *finally* new bone growth in Jack's hips! The top of his acetabulum have started to grow & he now actually has some curve to his hip sockets :)

This cast will be on for the next 6 weeks & will hopefully be his last :) At our next appointment he will be fitted & coming home in a brace. We're not sure what type yet but we do know he will be wearing it for 24 hours (minus splash time in the bath!!) until his hips have fully healed. We are very excited & feeling very blessed to have such amazing support from family, friends and our amazing surgeon :)

Jack is sleeping peacefully in his own bed & I will finally be able to sleep peaceful too...

Back to reality ....

2008-08-21T21:50:00.000-06:00

We have spent the last blissful week far away in a restful place with good friends near by .... it was heavenly! "We" finally gave in & bought a new camera before we left so I will play a bit tonight & hopefully have some for our update tomorrow after Jack's surgery.

We have another closed reduction with arthrogram attempt tomorrow & we are really hoping this one brings success. It has been 3 months since Jack's initial closed reduction & there is "normally" evidence of new growth by now. Although we know Jack isn't a "normal" case it would be so, sooo reassuring that we are making the right decisions if we saw some. That the last 3 months haven't been "for nothing" ~ you know?

Jack's surgery is scheduled for 7:40 with check-in at 6:30 (yucky for Mom & Dad but good for wee Jack!). We will hopefully be home by dinner & I will update as as soon as we have Mr. Happy comfortable :) Please send Jack strong "GROW, BONE, GROW" prayers and wishes tomorrow.

2008-08-08T11:15:00.000-06:00

still more journal entries .... almost caught up!

WEDNESDAY, AUGUST 06, 2008 11:53 AM, CDT

We had Jack's appointment with his amazing surgeon, Dr. Joughin, yesterday to follow-up after his last surgery. 5 hours and an MRI later .... Jack is scheduled to return to surgery August 22nd.

He is still doing amazing ~ much, much better than his Momma is this week. For the most part I feel very positive about 'all this' but yesterday just wasn't one of those days.

Dr. Joughin was frustrated & worried about Jack's last surgery. Dr. Kiefer didn't exactly follow through with her wishes which, in the end, may give or poor dude longer in his cast. He fought the MRI again & she was unable to read it! From what she can 'kind of tell' from the 'fuzzigram' (I love her !!) was that Jack's hip is 'in the right area' but looks placed too far back which wouldn't place any pressure, which wouldn't encourage any growth ..... or if there is pressure ~ growth in the wrong place. She is also in agreement with us .... we do NOT want Jack taken out of his cast & put into a brace if there is ANY chance of it not working. In her words you just do not 'mess around with a case this severe' UGH !!

Follow that up with the first 2 hipbabies in spica casts I have met personally ..... getting theirs off, parents walking out with their castless children cheering 'I am so glad we will never have to come back again' & a very tired, worried Momma ..... yup. I am feeling much better again today though :)

We'll know Jack's time August 21st .... we'll let you all know so you can send sweet Jackjack happy thoughts & strong 'GROW, BONE, GROW' vibes :)

Love you all,
Rich & Steph

ps ...... guess who started crawling Monday !!!!!

TUESDAY, JULY 22, 2008 04:54 PM, CDT

Jack is still doing really well :) This cast has been giving us some trouble but hopefully with the additional trim it got today at our 10 day follow-up, this week will be better.

Jack's hip is in a good spot for growth & is holding steady. There still is no sign of new bone growth & we need to go in for an additional appointment in 2 weeks when our surgeon returns from holidays. We really need to have those bones start growing over the next month ..... please .... GROW, BONES, GROW. His right hip, his 'good' one, is also in a good position but has absolutely no new bone yet.

Our next appointment is to decide how to move forward with Jack's treatment.

Thank you for holding tight with us ..... this is still going to be a long journey but we couldn't do it without the strength we get from those that love us!!

Much love,
Rich & Steph

FRIDAY, JULY 11, 2008 02:22 PM, CDT

We are home!!

Jack did great today! He's sleeping comfy in his own bed :)

He did really well last night & actually slept from 12 - 5! That is the first time he's slept that long in 6 weeks .... little monkey!

His hips are looking good, his new cast is bright green & his right leg in only half casted !!It feels sooooo good to see his little leg again :) His left leg is now at a strange angle ~ almost a little towards the back but his hip was stable when Dr. Kiefer changed his cast. This angle puts more pressure on his acetebelum to encourage that bone growth!

Follow-up is in 10 days with another xray to double check the placement but so far it's looking great!!

I'm going to sneak in a nap while Jack is & I'll update with pictures & more information later.

What a good day :)

Love,
Rich & Steph

THURSDAY, JULY 10, 2008 01:47 PM, CDT

Hi Everyone,

Jack's surgery has been scheduled tomorrow for 8:40 with check-in at 7:45. This worked really well last time .... he didn't have too long to be hungry! Again, no food or milk after midnight & nothing after 5:30.

It has really helped having Ben & Hannah home this week .... I don't have much downtime to worry :) I'm just praying this gets easier every time we go in... he's just so small.

We are really really really hoping this second closed reduction works so we can avoid the longer open reduction. We still will not know until after Jack's surgery tomorrow whether or not he will be recasted. Ben & Hannah have been really excited that Momma has finally let them sign Jack's cast .... so are their buddies !! It's filling up quick :)

Please send Jackjack deep sleep thoughts so the night is easier on him,

Love to you all,
Rich & Steph

TUESDAY, JULY 08, 2008 04:09 PM, CDT

Hi Everyone,

I've added an update to our blog & will do another after Jack's surgery this Friday .....

http://web.mac.com/stephkilbride

Hope everyone is well.

Love you all,
Rich & Steph

SATURDAY, JUNE 21, 2008 09:29 PM, CDT

Hi Everyone,

I've been working on a new blog over the last couple of days to make it easier to keep everyone updated on Jack. Pictures & updates are available in the same place :) I'm also hoping to use it as a resource for other parents of 'hip-kids'. I've started adding info & will be able to add pages
to help answer the 'how do I' questions that there aren't many answers for online!

http://web.mac.com/stephkilbride

Jack's feeling better & it is definitely the heat that's making him feel yucky .... needless to say, the fans are now out :)

Love you all,
Steph & Rich

WEDNESDAY, JUNE 18, 2008 07:13 PM, CDT

We got the call today .... Jack's next surgery will be on July 11 with Dr. Keefer. Our 'regular' surgeon, Dr. Joughin, will be away on a much needed vacation & they both agree that surgery can't wait until she returns due to his hip moving.

Jack's doing great but has been a bit under the weather the last few days .... not sure if it is the heat or a bug :(

Much love,
Rich & Steph

MONDAY, JUNE 09, 2008 07:21 PM, CDT

Jack was a super trooper today!!

Have you ever felt like you climbed onto a ride that you thought you were brave enough to ride & once you got on, & had no choice, REALLY wanted off?? That is how I would classify our day ... Jack's follow-up appointment was this morning at 9:45. I was thinking it would be a 15 minute 'everything looks great' appointment & we walked into the house tired, but happy to be home, at 4:00 this afternoon!

Jack's xray this morning showed that his hip had shifted :(

This lead to an MRI, followed by a CT scan, with meetings with Dr. Jaughin in between. I'm sure they were tired of seeing us by the end of the day!! Jack did great with the xray .... not so good with the MRI, which made us 'need' the CT. I was scared too .... how noisy is that MRI machine?? Especially when you are 1, wrapped tight, held down by velcro & stuck in a noisy tube where you can hear your Momma but not see her for 15 minutes!! Needless to say Mr. 'you're a strong little monkey' kicked & wiggled so much they couldn't read the MRI... even with extra enhancement :)

The CT takes pictures quicker, even if Grandma could hear poor Jack all the way out in the waiting room & he kicked all the way through, & thankfully worked without sedation!!

In the end, his left hip has shifted (hopefully due to reabsorbed tissue!) but is still in a good spot. Dr. Jaughin will not have time to do Jack's next surgery before she leaves for a much deserved month off, so a colleague will do Jack's next surgery during July. Brenda will call with the date as soon as she has it.

Jack's still doing great ... our hardest time is at night. He's up every 1 1/2 - 2 hours & this is 'normal' for these little ones. I've been given strict instructions to 'leave the laundry in the dryer & to nap when he does' by the experts ... I'm starting to think that sounds pretty good :)

I've added some not so good pictures of Grandpa's special spica chair due to the rain & really weird lighting in our home! I'll get better ones once it stops raining & I can get the amazing gift out on the deck to show you how it works !!

Much love,
Rich & Steph

SATURDAY, MAY 31, 2008 10:09 PM, CDT

Jack is doing GREAT today :)

I'm not entirely sure if it's due to the fact that I am in desperate need of 24 hours sleep or that Jack has already adjusted like a trooper ... but it is very, very hard to believe he just had surgery 48 hours ago !!

He did really well without his milk from midnight on Wednesday and I also feel very blessed that we were the first surgery! It would have been an even harder wait if Jack was upset from being hungry. I was able to take him right into the O.R. until he was asleep at 8am & he was in recovery by 9:30!! Dr. Jaughin is happy with how his hip is 'docked' right now. Due to his left hip never being in the socket, the tendons & muscles holding it in place are, naturally, longer. When his hip was pulled down & placed in the socket, the tendons (which would now be too long) slipped between the wall of Jack's hip socket & the ball of his hip. It is our greatest wish that this extra tissue gets re-absorbed by his body & that the bone of his hip socket grows ~ GROW, BONE, GROW. We have to take this 'surgery by surgery' right now. Dr. Jaughin will need to do an open reduction *if* the extra tissue remains because the proper amount of pressure won't be on his hip socket .... which is important as it stimulates the bone growth.

Our follow-up is June 9th & we will find out the date of Jack's next surgery at that appointment (we do know it will be the last week of June).

Jack had some unhappiness once he was awake .... okay a full, very long, hour & a half of unhappiness, due to the anaesthetic & as 'white haired poppa' pointed out ~ 'I wouldn't be so happy either if I went to sleep & woke up with that contraption on my legs!' but has done amazing ever since!! We had a good night on the unit, only waking every 4 hours for medication & vitals & were let loose by 12 on Friday :)

Around 5 pm yesterday we had more excitement as we realized that the outpatient pharmacy had sent us home with someone else's medication & I had already given Jack 2 doses !! After a very panicked (& yes angry!!) call & return to emergency, it was determined that LUCKILY the medication was an anti-inflammatory for colitis & Jack was stable, well under the therapeutic limit & could only be helped by the anti-inflammatory ... I am too scared to even start with the 'what ifs' so I have given the little hamsters in my head very strict instructions to stay off of their wheel!! Jack was finally given some pain medication & they were able to track down the little girl who wasn't getting the meds she needed .... I only hope she got Jack's codeine & not something that could hurt her! I know ~ I am still shaking my head too!!

We have had an excellent day, just being home, sitting in the sunshine & enjoying some quiet. Jack got an extra special, unbelieveable, still makes me cry at the amount of love that went into it, gift today. My wonderful Dad, after seeing the tables that the hospital sends home, went directly to the lumberyard, had to come back to the hospital for his wallet in Mom's purse, and has stayed up for 2 days to make Jack the most amazing spica table we have ever seen. He has a created a 'rocking horse' for Jack with strong Arabians running on either side, where he can sit like any other little boy to eat, play, rock & just be. I cannot put into words the freedom this gift has given Jack ~ or what it means to us to see the first genuinely happy smile from our little boy. It is beautiful. I am a very, very lucky girl. We are a blessed family.

People ask me how we stay strong & my only answer is 'because we are so loved'. Thank you all for loving us, praying for us & keeping us in your thoughts. It means the world to us.

Lots of love,
Rich & Steph

THURSDAY, MAY 29, 2008 11:34 AM, CDT

Hi Everyone,

Jack is out of surgery & is hanging in there with his new legs :) His right is in good position & his left is in place but there is quite a bit of tissue we are hoping will be reabsorbed as the new bone grows. Next cast change will be the end of June & it looks like it will definately be a 6 month journey. He was not impressed when he woke up but he's in better spirits now .... we'll fill everyone in more after we arrive home tomorrow afternoon.

Thank you so much for your prayers & wishes ... they help us stay strong!

Lots of love,

Rich & Steph

WEDNESDAY, MAY 28, 2008 11:09 AM, CDT

Hi Everyone,

Jack's surgery is scheduled for 7:40 tomorrow morning with 'check-in' at 6:30 .... mmhmm - that's what I said too!

We are happy that he will get his new legs early & apologize to our neighbours that Jack wakes when he find out he can't have his bottle of milk every 3 hours during the night :)

Surgery will be about 2 hours long & we should be home by Friday night .... we'll update after we see Jack in recovery.

Lots of love,
Rich & Steph

WEDNESDAY, MAY 21, 2008 04:10 PM, CDT

Hi Everyone,

There were no cancellations for tomorrow, May 22nd, so Jack's surgery will be next Thursday, May 29th. We should know his surgery time by next Tuesday.

He's doing really well & we've been contemplating a name change as he adjusts to crawling & just happily causing trouble to ..... Denis :)

We'll let you all know of the time when we get the call.

Lots of love,
Steph & Rich

TUESDAY, APRIL 22, 2008 03:31 PM, CDT

Hi Everyone,

We've had a very busy week! Dr. Jaughin called last Thursday to let us know Jack's surgery had been delayed due to damage done to his lungs from the pneumonia & RSV. The chemicals they use, to keep Jack asleep, would have increased his risk of asthma & pneumonia. We are (now) thankful they decided to delay his surgery but it was hard to believe they had waited until the day before! Not only do we have to emotionally prepare again but the poor family we 'bumped' to have Jack's surgery wouldn't have had to prepare again either... grrrrr !

We have a new scheduled date of May 29th and we are on the cancellation list for May 22nd. I am hoping to get the call for the 22nd because that is a very special date in our house! Hannah had her open heart surgery May 22nd & she has done so well that it would be an extra special day if Jack got his 'new legs' on that date too !!

We are very happy to see those chubby legs for another month & that Jack has extra time to explore his world.

We'll keep you all updated with Jack's surgery date as well as his many appointments this month.

Love to you all,
Steph & Rich

2008-08-08T10:58:00.000-06:00

Journal entries from our Caringbridge site ....

THURSDAY, APRIL 17, 2008 09:36 AM, CDT

Hi Everyone,

We have just received a call cancelling Jack's surgery tomorrow due to his pneumonia. I will explain later today but right now I am going to go crawl into bed & have a nap with our sweet boy ...

Love you all,
Steph

TUESDAY, APRIL 15, 2008 08:49 PM, CDT

Hi Everyone,

We got a very early call today from the hospital & we went through what I call the 'has your child had' list (again) with the surgical nurse. It's reassuring knowing they are so thorough and yet this is still scary. We are doing well with the reality of treatment, cast and changes to our routine. We have accepted that this is what needs to be done but still ....

What is upsetting is handing our sweet, trusting child over to a room full of people we don't know... yet need to trust. The thought of handing him over & watching someone else carry him down a hall into a strange, cold room full of machines & people in masks is enough to make me not go through with this. Hannah had surgery when she was 2 & I was able to take her into the OR until she was asleep & I pray that I will be able to do this for Jack. He is so little, so sweet & this is so scary .... even when you don't understand. Especially when you don't understand.

We need to call surgery on Thursday for our times: when he has to stop all fluids (he has to have only clear fluids after midnight .... poor dude as he STILL wakes every 3 hours for formula! Mommy & Jack will be napping lots this week to store up energy!), time to be at admitting and estimated surgery time. They try to have all 'young ones' into surgery as early as possible during the day.

We want to thank you all for your never-ending support & love. There will be days ahead that are great & others that are maybe not so much ... it helps knowing that we can share both.

love to you all,
Rich & Steph

MONDAY, APRIL 14, 2008 10:15 AM, CDT

Guess who's turning one !!

Jack's birthday isn't until the 20th but we had our big double birthday bash for our *small* family last night :) We are so blessed to have the support and love that we have - that is how we make it through these challenges we keep being 'given' :)

Jack was born only 2 days before Hannah & not only was he 'the best birthday present EVER' but he was home in time for her 6th family birthday party last year!

Hannah brought this home from school this week & I think it sums things up perfectly .... I giggled & got watery all at the same time! We have amazing children ....

When I Got My Baby Brother
by Hannah

I have a new baby brother. My mom's tummy got bigger and bigger and out came a baby. Then one day my mom got home. Then a baby was in my house. We named him Jack. I feel happy to play with him. I love Jack.

and we love you all,
Rich & Steph

WEDNESDAY, APRIL 09, 2008 05:52 PM, CDT

Hi all,

Dr. Jaughin's nurse, Brenda, called today with confirmation that Jack's surgery will be on the 18th. It's hard knowing that they had to bump other children ... not only because their families will now have a longer wait but that Dr. Jaughin felt it necessary. I feel grateful and guilty all at the same time - no wonder I'm tired :) We will get the call for his time slot by this time next week.

Our little monkey started to 'crawl' this week! He had been using a stealth roll method (very quiet & fast until he got to where he knew he shouldn't be!) & just this week has modified it to a goofy looking armycrawl/digmygoodtoesin&launchmyselfforward kind of scootch! I have a feeling his cast will not be holding him back either .... As I finished typing the last sentence he's just scootched all the way across the living room & is trying to unplug Richie's computer - Rich's response .... 'You're way too mobile now Dude' (with a laugh to follow!!) We will definately enjoy him moving this week .... go Jack go !!

He's had a good week. He is feeling so much better & is back to keep Mommy busy during the day!

Thank you so much for all the messages, phone calls and offers of help. We are again reminded how lucky we are !

Love to you all,
Steph & Rich

Once Upon a Time ....

2008-07-20T12:06:00.000-06:00

Jack was born April 20, our third baby, head first with "no signs" of hip dysplasia. I share this because he didn't fit into the normal risk factors. Your little bubba is more likely to have CDH if you have a ... first born girl, with breech presentation and/or family history.

Jack had his hips checked at every well baby visit, vaccination and visit to the ER (which included xrays clearly showing his dislocated left hip at 2 months old). Jack's CDH slipped through 12 different people! It was detected one very fateful visit to the Children's Hospital by an amazing radiologist for RSV and pneumonia!

Following are the entries I added to our CaringBridge page right after diagnosis ....

MONDAY, APRIL 07, 2008 12:00 PM, CDT

Okee Doke, here we go!

Jack's appointment went really well this morning. His surgeon is fabulous & will be the same one that saw Jack as an in-patient last week! We have a very good feeling about not only her but the whole ortho clinic!

Jack is scheduled for April 18th to have surgery. Here is the plan ... as of today.

For his right hip, which is stable but dislocates when moved and has a shallow 'cup' (or acetabulum), Dr. Joughin will do a closed reduction (meaning no surgical incisions are needed) into position. Jack's tendons should be loose enough to move this hip fairly easily into the right spot. Our hope for this hip, is that the pressure from the ball on the socket will encourage it to grow & surround the ball of his hip more.

His left hip is a weeee bit more complicated. She will have to make a small incision and 'nip' his tendon as it will be too tight & currently limits movement in this hip. Due to it being completely dislocated since birth, the cup (acetabulum) has not formed. There appears to be a little lip where it should be .... so the plan is to place the ball up against this lip to encourage it to grow (grow baby grow!).

Once both hips are in place they will cast Jack with his new 'frog legs' from armpit to ankle for approximately 6 months. He will need to go into the OR every 6 weeks to check the progress of his hips & get a new cast.

This is what would be our best outcome for the 18th & the one we really, really want!

This webpage has a really good visual for those of you more like me :) Jack's right hip looks like picture C and his left hip looks like picture E.

http://www.ergobabycarrier.com/press/2007/11/hip-dysplasia.html

Now ... IF Dr. Joughin is unable to get Jack's hips into a good position he will need an open reduction. An open reduction is when the hip is opened and the surgeons can physically see & place Jack's hips rather than using xray. The risks to this surgery are higher and recovery would be longer. So we really really want the closed reduction to be successful :)

After Jack's 6 months in a cast he will have some pretty cool braces that he will start wearing 24/7 and eventually be able to move to just wearing at night-time.

We are doing well - I am back in shock after seeing his xrays & I know that Rich is feeling the same. It is just so hard to believe that so many Dr.'s and nurses missed this. Dr. Joughin, I am pleased to tell you, is going to give 'our miracle radiologist' big kisses - we are so greatful he noticed Jack's hips .... so greatful!!

SUNDAY, APRIL 06, 2008 04:45 PM, ADT

It's Sunday night and we are ready for tomorrow morning & whatever it brings. The house is clean, laundry is done, freezer & fridge are full ... but the best part is Jack has been home this week. It was neat to see how excited he was to be home - big 'happyjack' smiles for everyone! He's had a great week & seems to be completely recovered from the RSV & pneumonia, which is what the Dr.'s were hoping for, for tomorrow.

We meet with Jack's Pediatric Orthopedic Surgeon, Dr. Braurer, tomorrow morning at 8:15. When we met her partner, Dr. Joughin, last Monday she let us know that tomorrow's appointment will be to discuss upcoming treatment &/or surgery as well as scheduling.

I was very impressed with Dr. Joughin on Monday. She literally 'hauled' all the Doctor and residents that had seen Jack during his 5 days in the hospital & taught them how to check children's hips 'properly'. I felt sick when she told me Jack's diagnosis & it felt very good to see her share the same emotion. CHD is normally caught within the first few weeks of life & the earlier it is caught the less invasive & lengthy the treatment. It's hard to believe how long Jack has gone.

We will update as soon as we have answers and dates tomorrow.

All aboard ....

2008-07-19T14:51:00.000-06:00

Welcome to our adventure!

It is my hope, through our blog, that I am able to keep our loving family and friends updated through jack’s treatment for Developmental Hip Dysplasia (DDH) and help others who may be just starting or are currently treating a child with DDH.

This amazing boy is our “happyjack”.

Developmental dysplasia of the hip (DDH) or Congenital dysplasia of the hip (CDH) describes a variety of conditions in which the hip does not develop properly.

The hip is a 'ball and socket' joint. Normally the top of the thigh bone (femur) has a round ball shape which fits into a cup like socket on the pelvis (acetabulum). There are a range of developmental hip conditions that can affect babies.

In the mildest forms, the socket may fail to grow deep enough. In the more severe forms, the femoral head or ball may be displaced completely out of the socket and be dislocated.

We know that Jack's left hip has been completely dislocated since birth and that his right hip is in contact but in an 'abnormal' way.

This is our journey .....

One "Hip" Momma

i.love.this

gratitude challenge day 7

Let's do the time warp .... AGAIN !!

gratitude challenge ... day 2 ...

take note. give thanks. do you dare?

at least it's not the living room

Wordless Wednesday - Mother's Love

Just Two Little Words

Wordless Wednesday - 1st Swing after 13 months casted & braced !!

We Have Survived

And the squeak goes on ....

We now have a time ..

Then You Stand

Because Ketchup is good on anything

The long and winding road

You've Come a Long Way Baby :)

This Time Tomorrow ...

How ....

a healing hip & a broken heart ....

Spoiled ... rotten .... again

I'm blaming it on lack of sleep

Full Circle .... almost

Through to the other side ...

You tell him ....

From down the hall

Try not to blink .....

Phone calls from week*s* past ....

two, deux, dos ....

Blessed

My Middle Space

HDIF or How Do I Friday

DIAGNOSIS

THERAPY

The Journey Continues

OneHipMomma Found !

Look Who's Standing Too !!

"A long way to go" ....

What worked for us ....

A monkey has entered the building ....

At a loss ...

It's the most wonderful time ... of the year

Finally good news ....

Back to reality ....

Once Upon a Time ....

All aboard ....

Phone calls from weeks past ....