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Wednesday 28 September 2011

...2 Week Mark...

Wow, the days just seem to be flying by!  We are already thinking about OR dates for Lauren's cast change!  I can't believe we hit the two week mark already!  It truly is amazing to see how quickly Lauren was able to adapt to being in that very restrictive body cast!

Over the past week we have kept Lauren so busy and that really seems to be the key to success!  A tired baby sleeps awesome! :)

Even with the downpour of rain on Monday, Lauren, Auntie, Grandma and cousin Logan ventured off to the Science Center for a fun day outing.  Apparently Lauren had such a blast checking out all of the cool stuff there!  I heard that it was a little crazy at times for Auntie and Grandma, but it sounds like a good time was had by all.  Lauren came home excited to see Daddy, but even more excited to see her crib and enjoy a 2 1/2hr nap! :)

My stomach had been in knots just thinking about Tuesday Sept. 27th.  This was the day that Brayden was to be checked for CDH or DDH, as it can be hereditary, and Lauren required her two week post op follow up appointment with the surgeon.  It was back to back appointments for us at Children's, first Brayden's ultrasound, then Lauren's x-ray, followed by a consult with our Dr to review both scans.

Brayden and I sat in the waiting room of Radiology waiting for our name to be called while Lauren played in the main playroom area of the hospital with Daddy and Grandma.  The white walls of Radiology, as well as the rest of the hospital, are all to familiar to our family having been through everything with Nevan.  About 20mins later we were called into a dark room where I was asked to unclothe and hold Brayden's legs while the scan was done.  The ultrasound tech then left and we waiting for the radiologist to come and do a stress test and further scans on his little hips.  My little man was far more calm that I during the whole appointment, he just enjoyed looking around the room and sucking away on his soother, I on the other hand was trying to be calm and patient; however that wasn't working too well for me.  I must have driven the ladies crazy because after each side was done I was asking "is it normal looking?  Is everything ok?"  They were so kind and understanding and after the appointment was complete we got a the best comment from the radiologist "those are some great looking hips!".  Ok, I could breathe, Brayden was good!

We then rushed over to the old building where the Ortho Clinic is to have Lauren's hips x-rayed.  I have to say that because she is casted it makes it pretty easy from a positioning standpoint; however not from an emotional standpoint.  Lauren and I walked into the x-ray room and it wasn't even two seconds before she was pointing to the door and crying out.  I laid her little shaking body down on the x-ray table and a minute later we were done!  Lauren settled and gladly said "bye bye" to the ladies in the x-ray room!

As we waited for our Dr to review the kids scans with us I walked the halls with Lauren, trying to keep her calm and her little mind stimulated.  I was stopped halfway down the hall by another Mom who asked me about Lauren's cast.  She introduced herself as a Mom of a 7 year old daughter with bilateral DDH/CDH, meaning that both hips were once out and had been since birth!  I was in shock, it wasn't caught on this little girl until she was 2 days away from turning 7.  Garry and I were in awe of what the family had been through.  After a diagnosis at Children's hospital, the family flew to Sick Kids for a second opinion and ended up with a far better success rate in Ontario, so they moved the family there for approximately 7 months to have each hip reduced separately in an "Open Reduction".  Typically after age 5-6 Dr's won't operate on Children that have gone undiagnosed.  Further to that, if one of this little girls hips had taken and the other one hadn't, they would have had to do another operation to dislocate the working hip as there is only 1 chance at getting it working correctly!  Wow, this little girl was now running and jumping and back to enjoying 7 year old life -so awesome!  It was so nice to speak with another Mom and hear about her journey and a tough journey at that!  While us parents were talking I looked over to check on Lauren who was sitting on my Mom's lap and that same little girl had started reading a book to Lauren - it was just far too cute!

Our Dr was finally ready for us, we first reviewed Brayden's ultrasound scans together.  He was happy with the results and after a little check on Brayden's hips himself, he said he is all clear!  We don't need to do any follow up on him until he is 2!

The last hurdle was to see if everything was ok with Lauren's x-ray and if her hip was still in the socket and in the correct position.  I was so nervous reviewing the image with our Dr, if the hip was out it would be an emergency trip to the ER, repositioning of the hip, then re casting.  Within about 1 min he said that he was very happy with her hip position and everything was looking great!  YES!!  Good news for both kids.  Apparently if the hip was to dislocate it would have done it in these first few weeks.  He then went on to say that he is trying to get OR time for the end of Oct as everything looks so good he doesn't want to wait till early Nov (his assistant already had time avail in Nov) to remove this cast.  As well, the next cast will be far less restrictive and that things will be a little more normal with the next cast, she will be able to move from her knees down, she'll be able to wiggle a bit more and possibly stand!

Even though Garry and I both left the hospital feeling exhausted emotionally and physically, we left with all good news.  Little Brayden isn't going to need to be placed in a harness and little Lauren is mending great!  Our prayers were answered!

Thursday 22 September 2011

...1 Week Down...

We made it through our first week!  Yay!  Baby steps right?  Today we celebrated this with a little treat from Dairy Queen ~ would have loved to have celebrated by going to the park or by doing something special outside but it was not the best weather out!  Little Lauren didn't seem to mind, she enjoyed a few spoonfuls of  the child sized ice cream cone we shared while we celebrated with GG, Logan and Auntie.  Daddy and Brayden celebrated with a nap on the couch! :)

When I first thought of putting a website together my first thought was how can I update as many people as possible with so little time in each day, blogging seemed perfect.  Then, once we started down the Hip Dysplasia road, we noticed that there wasn't a lot of relevant information pertaining to tips or equipment that worked here in Canada.  There was lots of info on people going through this in the UK and a few in the States.  So, should you know of a family that is just starting on this journey please do pass this web page a long to them and let them know that we would love to chat with them and possibly help answer any questions they might have about this whole process!  We would have loved to have been able to chat with someone prior to surgery about what we were getting into, just to make sure we were organized enough to bring Lauren home from the hospital.

Here is a picture of the dream table we ordered from an amazing lady named Stephanie in the States.  After going through this twice with 2 of her 7 kids she created a table that worked for her child to eat, play or just hang out in.  Spica casts don't allow you to just place your child anywhere due to the position of the legs (unless they are laying down), so having somewhere they can sit up right and play, eat or watch a tv show at is amazing!  This table is worth it's weight in gold!  The table was $200.00 plus shipping.

Here is her website: http://www.freewebs.com/arymanth/

                          She can sit up and watch a cartoon in the am!
                                 She can create a work of art!
                           She can share the table with her cousin!
                            She can prep her meeting notes before...
                            getting on an important phone call...
 
                        Or, she can play with her fav GG & Logan!
                                     Cappuccino anyone?

Thank you so much Grandma and Granddad for this awesome table!!!

Garry and I hunted high and low to find the perfect stroller.  We were told that the cheap ones were the best; however with Lauren in the position she is, it made it really difficult to find one that worked.  We ended up, 20 strollers later, finding this one.  The fit couldn't be better and it comes with a rain cover that covers her legs, she can lay down and sleep in it and it is easy to push!!  This stroller, although not the cheapest, is amazing.  It is the Maxi-Cosi, Pearle. This one retails for $179.00 at Toy's R Us:



Thank you so much Great Grandma for this stroller, it will get a ton of use!

Whenever Lauren is grumpy and just needs a change of scenery we head outside.  It was important that we have a fun toy that Lauren can ride on when not in the stroller.  This little bike was a gift from Grandma and Granddad at Christmas.  And with a quick seat belt modification along with a non stick mat placed onto the seat Lauren is ready to roll.  This push bike retails for $99.00 at Toy's R Us.

                                          Modified seatbelt.
    The non stick rubber mat we use to put under Lauren's bottom.

For travel we tried to use our Britax, but unfortunately it just wasn't a great fit with the position Lauren's legs are held in.  So, we were able to borrow this one from a friend.  This should fit your child unless they are casted in a laying down position.  This is the Sunshine Kids car seat and it retails for approx $300 at West Coast Kids.


Having the proper information ahead of time would make it a lot easier to benefit from searching for equipment on sites such as Craigslist or Kijiji.  Hope this helps!

I have a few more tips I will try and include in the days to come, but for tonight sleep is prevailing! :)

Monday 19 September 2011

...Adapting...

One thing Garry and I said going into this journey was that we were going to try and keep Lauren's daily routine as close to normal as possible.  Although we really didn't know what to expect when it came to casting positions, Lauren adjusting or equipment that would work, I think everything has really turned out well.  I say that almost one week into our 12 week casting journey!

Lauren loved music class, so my goal this fall was to get her back into music on Fridays.  Her first class was just last week.  Garry and I talked about skipping it or taking her, we didn't really know how much she would enjoy it as she would only be 2 days post op (which meant pretty drugged up and still adjusting to the cast).  But, since the class was only 2mins from home we decided to give it a go, if it didn't work then we would just excuse ourselves and head home.  Well, it turned out that little Lauren was in her glory.  She was dancing with her arms up and grooving to the music.  She really enjoyed watching all of the other kids dance and shake their musical instruments as well.  Even better was the fact that after the class she was exhausted and came home to enjoy a 2 1/2 hr nap! :)

One thing we rarely miss is Church!  Unless someone is sick or we are out of town we skip it, but other than that we are pretty much there on a weekly basis.  Lauren just loves the contemporary music, but her fav is she really loves seeing all of her wonderful friends - big and small!  We normally have her in the service for the first and last part and let her enjoy the nursery toys during the sermon; however this week she lasted for the whole sermon and into the prayer!  I was shocked at how well she was doing and also how happy she was to be there.  I think if she could have, she would have joined the band up on the stage and clapped and danced during every song!  It was wonderful to see her so happy!  We love our Church family!

Over the past week we have really come to love our walks whether it be during the day or in the early evening after dinner.  Garry and I have always tried to get the kids out at least 1-2 times a day for a good walk for as long as I could remember (even before Brayden).  But now these walks have now become our saving grace and Lauren's too I think.  Tonight Lauren woke up around 6pm from her 3hr nap a little grumpy.  It seemed that she was frustrated that she couldn't walk and also just out of sorts possibly with teething etc.  So, we packed the kids up and set off on our nightly stroll; Lauren on her pink trike and Brayden in his stroller.  I was able to adapt a little push trike Grandma and Grandpa got Lauren for Christmas last year.  I have added an extra long seat buckle on it as well as a no slip mat on the seat - we couldn't ask for a better fit for Lauren with that big cast.  So, off we went throughout the neighborhood with the two kiddo's and the dog for close to two hours.  Lauren's new thing is to hold the dog leash while on her trike and boss Freckles around.  She moves the leash from one hand to the other depending on which side Freckles is walking.  She yells out to him when he isn't keeping up or tugs on the leash if he needs to stay beside her.  Garry and I just laugh at the little bossy boots we have on our hands, good thing Freckles is pretty easy going!

There are so many little things we took for granted when it came to Lauren's care pre casting.  But now we are finding that we are having to be that much more attentive, pro active and organized and it is presenting a few challenges with two little ones, but we are coping and doing the best we know how (plus, it helps with Grandma and Granddad just across the street).  One thing that has made this whole transition easier is we are just so lucky to have such an easy going little baby during all this - baby Brayden has just been a dream.  He just needs love, food, cuddles and more food and he is happy!  If we can continue to keep our two little ones smiling each day then I know we are doing ok and adapting to our new life together as a family!

Saturday 17 September 2011

...Starting the countdown...

The day nurse advised me at 8:15am on Thursday (day after surgery) that once Lauren's car seat was brought up and approved by another special nurse on the ward that we were free to leave.  I quickly called Garry and told him what car seat I wanted him to bring up as we were ready to get out of here. It's amazing how quickly you can adjust to a situation, specially after weeks of resisting it in your head.  Lauren and I just walked around the ward like nothing had changed while waiting for Daddy.  Lauren was a champ while I changed her diaper for my first time and allowed me to put her down while packing up the room.  Wow, after hearing that "kids are so resilient" and actually wanting to say to people that I didn't want to hear that anymore and that I was so sick of that comment as this was going to be awful for my little baby~well, Lauren was proving them right and me wrong! :)

Trying to get Lauren to fit into her car seat was interesting.  She is in a "froggy" position with one leg pulled back further than the other.  I called all of the numbers in the Spica Cast informational booklet provided by the hospital to see if we could possible rent if not purchase the recommended car seat "Britax Hippo" or any of the "E-Z harnesses".  Well, needless to say, that booklet was a waste of time with no real valuable information and the phone numbers of places provided no longer carried any approved car seats for special seating requirements or knew what I was talking about.  Health Canada no longer rents/sells these car seats as there weren't enough renters so it wasn't profitable enough for them (effective Sept 2011).  TJ's was just rude and had no idea what I was talking about and the last number there was no answer.  Great, why have an informational booklet if there is no useful information?  The nurses told us that Lauren kinda fit into her car seat and it would preferred if we went home via ambulance.  No way, I had to find something that worked because for 3 months we weren't going to be home bound and having to transport her via ambulance to every medical appointment!

While walking around I spotted the community health nurse that had discharged Brayden and diagnosed Lauren with DDH or CDH.  While holding Lauren on my hip I went up to her and asked her if her name was "Sue", told her who I was and she looked at me and said "I know, I'm here to see you guys!"  I've never been so blunt with someone, but I told her that she wasn't Garry and my favorite person at the time, but over the last few weeks we had come to appreciate the horrible news she had given us about our little girl on Aug 3.  Turns out that Sue had actually done her paper on DDH and that had Lauren not been diagnosed over the next few months she would have had to have had major surgery(s) once her condition be identified and funny enough once Lauren was diagnosed her limp lessened and it was harder to spot, so the chances of it being noticed sooner rather than later by anyone would have probably been slim to none.  We are very grateful for meeting Sue, although she has thrown our lives in crazy turmoil for the moment, she has saved our daughter from years and years of medical issues some of which could have possibly included hip replacements, arthritis, major surgeries etc.  That was a full circle moment for me, we had the closure with Sue that I wanted, it had crossed my mind to go and speak with her on the maternity ward and tell her now that we were so thankful!

Sue turned out to be a wonderful advocate for us that morning.  I told her about our car seat situation and she was all over it.  Her and I were shocked at the lack of resources for parents dealing with kids in spica casts.  What does everyone expect us to do, just go home for 3 months and make due with nothing?  That isn't the kind of parents Garry and I are, we tried to be organized and have as much stuff ready for Lauren coming home and knew that some additional stuff would need to be purchased once we try fitting her in the equipment (such as stroller, skateboard and car seat).  I placed Lauren in the Britax Marathon car seat and showed the nurses that she fit, they weren't exactly pleased how she fit and thought that the transport should be our option.  It was noted that I could actually refuse transport and call a taxi to take me and my daughter home with no car seat should I choose!  I said, you don't have to give me an all clear, just know that she is not going anywhere in the car seat except home and that from there I will figure something out (she couldn't go anywhere with that cast and the straps being fully pulled out to secure her-she was pretty safe).

Our last few days home have been better than Garry and I thought they were going to be.  My brother in law and Garry built the special spica cast table we pre ordered for Lauren and it has worked out great! http://www.freewebs.com/arymanth/  We ordered the purple rocking chair with the flowers and butterfly for Lauren.  We asked to not have her name printed on it so that we can donate it to the hospital afterwards for another child to use during there treatment time.




We were able to swap car seats with a wonderful friend who has been so supportive (all of you Langely ladies have been amazing)! Lauren fits into the Sunshine Kids car seat perfectly and as it turns out her son didn't mind having to sit in Lauren Britax Boulevard car seat as he got to sit up high and see everything :)  Thank you so much Jessi, Lauren is now safely able to travel out in the car much more comfortably.

The other awesome thing we have for Lauren that I was able to slightly modify for her to use while casted is her little push bike.  Having her be able to go outside and get fresh air every few hours has really helped pass the time and make it more enjoyable for Lauren.  Last night Nevan was over and he got to push "Boo Boo" all around!  I'll take a picture once we go out again as it is just the perfect fit.

We have also borrowed Lauren's little friends wagon and are looking forward to trying that out later on today!  The wagon we have has seats and there is no way of us fitting her in with the awkward casts in there, this other wagon is perfect as it is just one flat bed.

I also just want to give a shout out to our amazing friends and family.  Without all of you, and you know who you are, we couldn't or should I say, I couldn't have made it this far.  Your love, prayers, support, messages, dinners etc have been greatly appreciated and do not go unnoticed.  It really takes a village to raise a child and we are so lucky that our "village" is made up of amazing, loving family and friends!!  So thank you again!  We feel so blessed!

Friday 16 September 2011

...She got us through it...

Well, it has been a very long 72 hrs...

The day before Lauren was due to have surgery, we went to go and meet with the surgeon to discuss everything one last time.  Garry and I had a few questions we wanted to know before Wednesday and the surgeon wanted to make sure that we were comfortable with everything.  Everything seemed to be status quo to what we had talked about until the Dr said that once out of the cast(s) Lauren would be placed into a rhino cruiser.  Garry and I both specifically remember asking the surgical Residant about this during our first visit and he mentioned that it wouldn't be necessary.  With both of us sitting there shocked, the Dr proceeded to tell us that Lauren will most likely be in this hardness until about 3-3 1/2yrs old, but not 24/7, the amount of time necessary would be negotiable based on her progress.

We both left the appointment a little discouraged that after this 12 weeks it continues and she isn't free; however we both agreed that if this is what is going to fix our little girl and allow her to do any activity she wants to, then we will do it.

Wednesday morning came too soon, I couldn't seem to find my footing and get organized.  All I wanted to do was stay in bed and pretend that this was going to be a normal day for us, that we really didn't need to go to the hospital.  But, it wasn't a normal day, we had to get going and get up to the hospital, ready or not Lauren was going to have surgery and be placed in the spica cast.  The only thing keeping me going that day was that Nevan was to be receiving his "I beat cancer trophy" ~ everyone was so excited for that presentation at the hospital!  I still think that Derek and Debbie deserved an award as well!

We arrived to the hospital on time with both kids and were relieved that Lauren had fallen asleep in the car without her milk as it was naptime and snack time for her.  The nurses let her sleep and waited till the last minute to check her get her ready for surgery, unfortunately we found out after they had asked us to wake her that the OR was running about an hour behind!  We now had a very upset, tired and hungry little girl on our hands.  We all tried everything to calm her down.  Eventually we decided to take her out of the clinic and over to the play area in the main reception area of the hospital.  There she played with her cousins and walked all over the place in her little hospital gown.  At about 12:45pm we were asked to come back, they were now ready for us, I was asked to dress into my hospital gown, cap and slippers. Poor Lauren had no idea why Mommy was dressed so funny and she tried repeatedly to remove the cap.  We said our good-byes to everyone and her and I proceeded to the OR.  What a cold, white, scary room!  I don't know how many times it crossed my mind to just run back and leave with my little princess, but, ultimately, this was the path we needed to go down in order to get her better.  My heart sank as I left her on the OR table sleeping.

Lauren ended up being in the operating room for about an hour and a half, we were called while we were waiting for Nevan's trophy ceremony to start.  Garry and I ran to the surgery clinic, I was so ready to see my baby girl, even if she was going to be in that horrible cast I had been dreading for 6 weeks!

As you can imagine, Lauren was pretty upset as she was coming out of the sedation, we tried to calm her down, but she was a little confused, in pain and very sleepy~not a great combo.  Our Dr came to see us in recovery and said that the "closed reduction" with the "abductor release" had worked.  He was very confident that the ball was in the socket and it wouldn't pop out!  Garry and I were ecstatic!  This was music to our ears, the most least invasive surgery had worked!  We ended up in a private room on the surgical ward after being in a room of 4, then 2!  Apparently, it works being the squeaky wheel!! :)

Lauren finally was able to calm down and get into a good sleep state at about 1:30am.  I decided it was best that I sleep too as I didn't know what the hours ahead of us would hold. I woke to the night nurse and Lauren talking away to each other.  Our nurse kept saying, "WOW!  This is a completely different baby, she is so happy!"  I was finally able to breathe a sigh of relief, she wasn't still in a great amount of pain anymore and the sedation was starting to wear off.  After a great sleep I woke up at 8:15am to Lauren laughing and talking with the day nurse~everything was going to be ok!

Tuesday 13 September 2011

...And So Our Journey Begins....


So, this blogging thing is something that I never thought I would ever do...I am not a professional writer  and I never felt a need to create a blog to update everyone on our day to day happenings until now...

On August 3, 2011 we welcomed our perfect little son to the world ~ Brayden Thomas was born at 1:19am weighing 7pd 15oz.  Garry and I were so excited to finally meet this little person that would complete our family of 4.  I was so excited for our daughter Lauren (15mths) to meet her new little brother.  I layed out her special "Big Sister" outfit a few weeks ahead (this way it was all ready for when I was to go into labor) so that my sister, who was taking care of Lauren, knew exactly what to put her in prior to arriving to the hospital that special day.  

Lauren had recently learnt how to walk just a few weeks prior so that was all she wanted to do while visiting Brayden and I at the hosptail, well, that and hold her brother for about a minute - it was just enough time for us to quickly snap a photo and then catch him while she was pushing him away.  As a Mom I couldn't have been happier and I have never felt more complete to see my two little kids together.  How blessed did I feel!  

As most of you know, I am not one to just sit around and wait for the world to pass me by, I prefer to get going on things and make them happen.  So, at about 12pm (about 11hrs after Brayden was born) I was ready to get going and get baby and I discharged!  Why not, Brayden was healthy and I had already showered, cleaned up the room and packed everything up!  My Dr wasn't surprised that I was ready to go and made sure to let the discharge nurse know that she was fine with this.  Finally at about 3:30 our discharge nurse came to see Brayden and I.  She was there to tell us about all of the different packages we were receiving, things to watch out with him, stuff I needed to watch for myself over the next few days and a few more tips/info.  While sitting on the room chair,  the discharge nurse asked if we had ever had Lauren limp checked out.  Garry and were a little confused as we just thought that was part of the developmental process a little one goes through when walking and that it would all even out in time.  The nurse said it again, and then said "that looks like hip dysplasia"...our hearts sunk.  Garry and I remember just feeling that drop in your stomach and then saying to each other we'll get it looked at, but I am sure it is nothing.  That night I contacted my Dr who then asked us to go and see her in her office the next day. 

While at the Dr's office the next day Lauren was examined for about 20+ mins.  She was prompted to walk back and forth down the narrow hallway of the office, her hips were pushed, pulled and pumped to see if there was anything abnormal - nothing was found.  Because the limp was noticeable our Dr wrote us a req for an x-ray on Lauren's hip and leg.  Once Garry and I got to the car we called the hospital to see if we could have it done that same day, but unfortunately we missed it by 15mins, they were closed.

The next morning we left the house early to make sure Lauren got her x-ray as soon as possible.  We arrived at the hospital or 9am and basically waited about 15mins before we were called in for Lauren's x-ray.  The Technician was so sweet, he knew that having our daughter strapped to a table was really hard for us to see, specially for me - Brayden was only 2 days old and my emotions were running wild.

Once we were finished we were escorted to the waiting room, we just need to make sure the radiologist had the images he needed.  It took about 10mins for the Tech to return to tell us that our Dr had been called.  Garry and couldn't wait to speak to her, we basically ran out of the x-ray area and back into the main lobby, were there was cell reception, and called her.  Lauren did in fact have DDH.  We are really blessed that we have an amazing Dr for Lauren, Brayden and I, she did everything that day to make it easier on us and try and provide us with as much information as she could.

On Aug 9th we were scheduled to see the Pediatric Orthopedic Surgeon.  Walking into the clinic was mind numbing.  I just remember thinking, I have customers/ friends on the next floor up, I have walked these halls over 100 times for client visits, never did I think that I would be here now for my daughter, that we would be using this clinic for personal reasons!  The Surgeon probably felt like Garry and I were never going to let him go, we asked so many questions only to realize we had only more we needed/wanted answers on.  He left us about an hour and a half later.  Lauren's x-ray, as we were able to see it, had a left hip completely out of her socket.  She was going to require a "Closed Reduction" and should that not take while in the OR she would need to have an "Open Reduction".  Further to that, she would require casting for 3 months.  She would have one cast for 6 weeks and then a new cast would be put on for another 6 weeks.  This cast would start just below her chest and end at her ankles.  Over the course of the next 3 months Lauren would need to be x-rayed to make sure everything stayed where it needs to be.  But, we may not be finished.  During surgery, should for some reason her hip and femur not accept each other and the hip socket not start to form while in place Lauren will also require a "Pelvic Osteotomy" (re shaping of the pelvis and casting for another 3 months).  Hearing that our journey may not be done after 3 months of this was too much for me to take, that sent me into a real emotional low for my little girl.  How were we going to do this to her possibly twice??