Feelings and hard preperation

I am having mixed feelings about this surgery because I thought that 3 years ago when I was at Shriners Hospital just for kids that that would be my last surgery, but I was WRONG!!! When I first found out from my doctor at Shriners that I would need to see the ONLY specialist in Texas at Texas Childrens hospital then I was sad, depressed, and I felt like NO ONE could help me feel better....not even my hero..(my mom) .... I had thoughts going through my head like.."I don't want to be that kid in the wheel chair again" ...... or .... "I don't want to feel handi-capped again".... and the worst thought was... "Wow!!! God really turned on me now didn't he??!!!?) All through the summer I was ignoring the pain and praying that my doctor visit would go well.. and when it didn't I was bummed. All I could thing about was being mad and how with all that praying God had really let me down...well then I got over it (not completely) ... and I apologized to God and asked him to forgive me for being mad at him... and from then on I have been praying like CRAZY!!!

This whole thing is CRAZY and OVERWHELMING for a 12 and 1/2 year old young lady. I am scared to death and sometimes I just feel alone through this whole thing. I know I am not alone but sometimes if my Mom brings up the topic or anything to do with it I can't help but tear up or cry...I know it seems foolish but it's the truth...... I am VERY, VERY thankful for my family members who have been praying and for my friends and church family who have been praying for me. :)

The least thing that I want to happen is people to say ... "oh hunny I feel soo sorry for you".. that BUGS ME!!!! I also dont want to be treated differently... or be treated like I am handi-capped!!! I want to be treated like an equal before and after my surgery....

I am thankful to the people who read and comment on my blog and I hope that y'all like this one and I will talk to y'all soon. :) :) :) :)

Sincerely,

Miss Hip and Sassy (Bailey) :) :) :) :)
P.S. become a follower if you aren't already!! :) :) :) :) :) :) :) :) :) :) :) :)

Miss Hip and Sassy

Hello EVERYONE!!! :) I am so happy about the comments that I read and I thank my friends and family for reading about me. Thank you EVERYONE for keeping me in your prayers and for telling your friends and family about my blog. :)


I just want to talk about how I feel and what I have to do as a young lady to prepare for this surgery... I hope that y'all like this post...


During the 2011 summer I had a doctor's appointment at Shriners Hospital on July 18th... when I went to the doctor I just had to have an x-ray, and then my doctor was going to look at the x-ray and do some hip rotations to see if I was all ok. Well when I was done with my x-ray's I had to wait in the waiting room for another hour!! I was kind of mad when my appointment was at 8am and then I didnt get my x-ray's 'till 9:15 .. and then FINALLY at 10:20 I got called back to the room where my doctor was going to look at me. Well then my Dad, Sister, and I were there waiting for another 30 minutes when she finally came in.


Once my doctor came in she said well let's look at the x-rays..(when she said that she kind of hesitated and she had a worried look on her face...) When she pulled up the x-rays I was holding my breath and crossing my fingers for good luck......well I didn't get good luck.. AT ALL!!!!


She was showing us the differences between the x-rays and told us that my hip was gradually getting worse!!! :(


I was DEVASTATED!!! Then she told me that she was going to give me the number to the ONLY specialist in TEXAS, and that he worked at Texas Childrens Hospital.


I was hoping that I didn't have to go through this again but I guess God has somethiing else in mind for me.. and I hope that whatever is instore for me is a good thing.


talk to y'all soon... :)


Sincerly, Bailey (miss hip and sassy)

A message from Bailey( AKA Miss Hip and Sassy)

Hello everyone this is Bailey (Miss Hip and Sassy)!! This is my first time talking on my blog and I am actually kind of nervous about it because I don't tell a lot of people about my "life story" as you may call it. :)


Ever since my Mommy has startd this blog I have found out that there are A LOT of people who read this. If you aren't a follower on my blog then please become one. :)


I have been reading the blogs that my Mom posts and the comments from others...ever since I have been reading the posts that my Mom has put on the blog and I am actually learning and finding out more than I knew about me and my mom. I am SOOOO VERY, VERY, VERY THANKFUL that my Mom, Dad, and grandparents are there for me.


My Mom has ALWAYS been there for me and even though we get in arguments sometimes she will ALWAYS BE MY BEST FRIEND!! Some people have a favorite super hero like Bat Man or Spider Man....well I have a hero and my hero's name is...Mommy!!! My Mom has ALWAYS been my HERO and she ALWAYS will be!!!!


Well I hope that EVERYONE has a BLESSED AND SAFE week and I will talk to y'all soon!! :)


Thanks for reading my first post!! :) :)


Love,


Bailey (Miss Hip and Sassy) :) :)

Preparation & Frustration

I am working diligently with the counselor and the nurse of the school to ready Bailey for her surgery.  Because we just learned that she will need to be out for about 6 weeks, we have to do the homebound option again until she can return.  She is in a new school this year and it seems that I am having to validate my parental decisions to people who 1)  don't know me or my family. 2) really have no clue of the type of surgery/surgeries that Bailey has had or will have

So! I am asked why I would DECIDE to have Bailey's surgery during the school year.  Are you kidding? Of course as the question is being posed, there are all sorts of disclaimers coming at the same time.  (Hint:  if, when posing the question, you have to apologize for asking...don't ask!) Here we go! Bailey will have her surgery this school year because TAKS (a thing held most dear in the public school system) is not promotion based for this grade level.  In addition, she needs to rehab and since I was born talented vs. rich, I have to work and cannot run her to rehab daily...THUS! she swims and does aquatic exercises at home so the summer is her most important time. 

Okay, this may read that I am really upset with the school...I'm really not...just mildly frustrated and offended.  It's not like I'm taking her out of school for a trip to Disney...but that seems to be more widely accepted!  GRRRRRRRRR!  

SO! I am set to meet with the counselor tomorrow to complete all of the paperwork for the homebound placement. 

Bailey and I are ordering a new wheelchair for her and one of my talented girlfriends will be commissioned to make a sassy and girly slip cover for it so that it isn't so medicinal looking.  Bailey (of course) has very specific design ideas for it.

I am thankful to Katie over at Shriner's Hospital for helping me obtain her records so that we don't have to do blood-typing.  (We learned that she is O- .)  Stay tuned for more information on the blood drive and for "Hip and Sassy" t-shirts!

Thanks to all of you for your thoughts and prayers.  Bailey watches the blog like a hawk to learn when she has comments and followers.

SHOCK....but no awe!

So...fast forward to Bailey's 8th birthday and the start of her 3rd grade year.  We visited the surgeon for her followup...we had no idea of the news he would deliver.  She still did not have good coverage of the femoral head and would require additional surgery.  For the past 6 years, we had been seeing the surgeon on a "self-pay" basis because he no longer took our insurance.  He told us there was no way he would be able to perform the surgery and ask us to "self-pay".  He referred us to a doctor at Shriner's Hospital in Houston. It certainly took lots of effort to get her into that hospital, but with the help of the surgeon and my Uncle Lloyd (a Shiriner) we were able to meet the doctor that specialized in this type of surgery.  So here we go again! 




Bailey just chillin...before surgery date


This time, they shortened the femur, rotated the pelvis and basically "shoved" the femur into the socket.  They put enough hardware in to make any handy man green with envy.  After an agonizing week in the hospital and a brief stint of me on my knees begging her to try to get out of bed , we were finally able to come home.

  I was a mess during this surgery...Bailey was older and knew what was going on and she was FREAKING OUT! I was trying to be strong for her and not let her know that I was worried.  My solution? Grit and grind my teeth...this was not smart...I left the hospital with a broken jaw...  I told no one about it...I had work to do! I had to be super mom! This job description looks much easier on paper! In reality, when you are having to lift a kiddo that weighs nearly as much as you do, there are a few problems...one of them being a hernia! OH! What I mess I was!

She recovered in her wheel chair...no weight bearing for 6 weeks.  She then went to a walker and later a cane.   She didn't return to school, she was taught by a home bound teacher that the district provided.  She did some rehab at Shriners and more in our pool over the summer and prepared herself for her 4th grade year.  Fourth grade was interrupted briefly with her getting the hardware removed.

None too happy with the photo op, or in spending the next 6 weeks in this chair!

Once again, with each return visit over the next 3 years we were told she was looking good...   I was so confident in fact that on her last followup to Shriner's I let her Dad take her and I went to work.  Once again, I got that call "...it's not good..."  So! Here we are, present day.  The doctors at Shriner's feel this surgery is beyond their scope so we are back at Texas Children's with a new surgeon.  Bailey is set for her biggest surgery yet a PAO (peracetabular osteotomy).  The hope is to give her as much of a normal hip as possible before she has to begin hip replacements.  Her surgery is scheduled for January 6, 2012.  The posts that follow this one will be from both Bailey and me.  We appreciate your support and your continued prayers.

Hopes Dashed Again! and Cutting To The Chase!

Okay - in starting this blog, I wanted this to be a way for Bailey and I get our thoughts and feelings out and hopefully the information will serve as a blessing to others.  Since I am just starting this blog 11 years into our struggle, I have been trying to bring the entries up to date...BUT! Since I am somewhat suffering from my attained age and decreased memory, I will try to bring you up to date in this posting.

Bailey went from the spica cast to another one (I think it is called a broom stick cast) that went from her thighs to her ankles with a bar running horizontally between her knees.  When we went back to the doctor for the removal of this contraption we learned that yet again, the open reduction had failed.  They would need to be more aggressive.  The surgeon called in the reinforcements.  The next open reduction included 2 additional surgeons that specialized in pediatric orthopedics.  They had FINALLY made some headway.  By this time, I was pregnant with my youngest (Hayden) and still trying to work a corporate full-time job.  Thank God for my mother in law...she was able to watch Bailey during the day as no day care on Earth would touch her.  (After Bailey's 9th surgery, and after Hayden was born, I decided I should leave corporate America to be able to take her to her doctor appointments and the like.)

I remember laying in the hospital bed with Bailey in her cast, holding her and singing to her.  Hayden would be kicking her the whole time.  (This was the start of the sibling rivalry!) I was about 6 months along at this time and the nurses would FREAK! When they would see me holding her...they were so afraid they were going to have to deliver a premie!

Hayden was also born with DDH.  BUT! Because I was certain that I wouldn't let a diagnosis escape us early on, we learned of her situation when she was 4 weeks old.  After a hip ultra-sound (that insurance refused to cover), the surgeon told us to put double diapers on her for 6 weeks (this pulled her legs into a "froggie" position) and then we did a re-check and she was perfect.  This was a blessing but also quite a blow...an early diagnosis with Bailey would have changed so much!

We repeated the spica cast and other casts for Bailey several times.  Each time she would require a cast change, it was considered a surgery.  FINALLY! After about 15 procedures, including hardware removals, we were told she was looking good and could go home and be a normal kid.  We would just followup with the doctor every year on her birthday to make sure she was progressing.

The "broom stick" cast...you can see the shorter of two sides...
notice the duct tape!

Will it be over soon?

Through this whole process my husband and I keep our eyes on God.  We know there is a reason for this that surpasses all of our understanding.  Make no mistake...although this has been (and still is) a very trying experience...we understand fully that we are still very blessed and that things could be so much worse.  We have had an opportunity to see many children in varying stages of illnesses, etc.  We remind Bailey every single day how lucky she is...  

I know that this diagnosis of DDH is more common than one would think.  My biggest regret and sorrow is that Bailey's diagnosis wasn't made in infancy where she could have had an easier "fix".  I feel that there should be a more extensive/accurate test than a doctor holding the baby's hip and rotating their legs...this is a subjective method.  C'mon medical science! Can't you come up with something better???

When we brought her home after the "successful" open reduction, I spent a lot of time holding her and hugging her (best I could) and we would dance and sing every chance we got.  It was summer time so we couldn't really take her outside (since she was in the cast she would get too hot) so we would take her to the mall and stay there for HOURS!  I blame this time for her addiction to shopping now.  LOL

It was during this first recovery that I realized how small-minded people are...I can understand kids staring but the adults! URGGH! That would burn me up! One day we were at the mall with Bailey in her cast and in her wheel chair.  We were in the food court (for the 3rd time that day) and she was eating a big cookie and drinking an ICEE.  Her chair was filled with toys, and books and the like...very obvious she was being showered with gifts.  These two older ladies were eating and thinking they were whispering to each other but in reality they were kind of screaming.  They were discussing how we should have Bailey taken away from us as it was such a shame to see a baby in that condition.  OH GOSH! Here we go again...poking momma bear! You could tell my husband was very pensive and hoping I had the self-control to not beat them with their own canes. 

Clay (my husband) and I held on to the fact that Bailey was going to be just fine once we got through the recovery period.  We were constanty amazed by Bailey's tenacious spirit...she actually learned how to WALK in that spica cast! It was so funny how she could really get around in that thing! When she was tired of "walking" she would pull herself just using her upper body.  She was in the spica for quite some time, we would have to go in for cast changes periodically.  I always looked forward to the look on the doctor's face when he saw Bailey on those followups.  She would leave the hospital with a pristine cast and return with one that had the holes covered up by duct tape!  Her initial start of a pink or "Barney" purple cast would end up silver.  My husband has an unnatural obsession with duct tape, but he is okay with it! :)   I think he can fix just about anything with that magic roll!

Try, Try, Try...and Try again!

In the days that followed Bailey's initial diagnosis, we were referred to an amazing doctor in the Houston, Texas Medical Center that had privileges at Texas Children's Hospital.  (I haven't gotten his permission to use his name here.)   We were told that Bailey would need to be put into skin traction.  The idea was to "lengthen" her leg so that the surgeon could perform a closed reduction.  It was actually a colossal waste of time and one of the most stressful weeks of our lives (mine and my husband's).  Have you ever tried to make a 1 year old lay flat on their back with their legs in the air and weights on the bottom of a contraption?  She kept flipping over, sitting up and just generally being an active 1 year old. 

I was still trying to work a full-time corporate job so I would "sleep" at the hospital at night and work during the day while Daddy stayed with her. He would entertain her as best he could leaning over her crib, and they would let him take her in a wheel chair around the hospital for a couple of hours a day.  (Prisoners get more "yard time".) He would push her around outside and they would watch the city buses whiz by...

I came back to the hospital from work one day and fell head over heels in love with my husband all over again.  Here was this big, tough, gruff man leaning over the side of the crib with toys hanging off his ears and doing a cute little dance for Bailey...he was trying so hard to keep her flat on her back so that skin traction would work.  It was the funniest and sweetest thing I have ever seen. 

Finally the day came where we were set to do the closed reduction.  Bailey came out of "surgery" in a hot pink body cast (spica cast).  The surgeon  came into her room shortly thereafter to deliver the bad news...the closed reduction didn't work.  We would be required to have an open reduction.  They removed the cast and we took Bailey home that night and were set to return in 3 days. 

I was scared to death...I had read so much about these procedures and I was terrified.  The surgeon kept mentioning AVN.  This is where the femoral head could lose blood supply and the bone could die...I couldn't think of anything worse. 

Three days later we dutifully drove her to Texas Orthopedic Hospital and that is where we spent the next week or so.  The timing of all of this is a little fuzzy to me, it was all quite a blur because the first 2 or 3 open reductions were unsuccessful.  I remember after the most recent failure the surgeon entered the room, all the blood had drained from his face, you could tell he had bad news.  (I think he was afraid my husband was going to knock him out.) With each failed procedure we grew more and more tiresome, desperate and weary.   

After the third try, we were told that she was looking good.  The days that followed, we stayed at Texas Orthopedic Hospital.  The first day and half following surgery was a nightmare!  Bailey was allergic to the morphine they had given her for pain and screamed and startled all night (startling is not good when your bones have just been cut).  When the meds finally left her system, she laid in her little crib, with that hot pink spica cast (again) and whimpered and cried.  I felt so horrible and guilty.  (There is no specific reason or cause of the DDH but there are some contributing factors...one of them is swaddling a baby...which we did, A LOT!)  One of the other contributors (I was told) is an increase in the hormone estrogen during pregnancy when you are carrying a female fetus.  I had miscarried before Bailey and was threatening to miscarry with her so I received lots of additional estrogen. 

After we were able to show the nurses that we could change her diaper with that cast on; and, we were able to show that she could eat solid foods we were finally able to take her home and that is where the real fun began...

Bailey in one of her Spica Casts...
Her sweet spirit shines through!

A Road We Must Travel

This is my first blog posting...and honestly the first time I have ever been so candid or public about our particular situation.  My family is the best and most important thing I will ever do in my life; and, while most people I know are aware that my oldest daughter (Bailey) has some medical issues, I rarely tell them everything.  I don't want anyone to pity my Bailey or to treat her differently, that will only handicap her.  Make no mistake, my Bailey is a perfect gift,  she just has a badge of honor and courage that is bestowed only on a select few.

There are other blogs out there about Hip Dysplasia but I haven't seen any with our particular situation...Bailey was diagnosed with DDH at age 1 and now, at age 12 (and a half!) we are still battling this monster.  Her diagnosis came  after many trips to the doctor asking if something was wrong with Bailey as she showed a number of the key indicators early on.  At age 1, this was a late diagnosis in DDH terms...in hind sight, I should have...(I should have done so many things differently, but through this process I have learned that you shouldn't "should" on yourself.  Take the experiences and use them...)

When Bailey was born, I was so excited and scared.  She was my first, and when you hold that precious gift from God for the first time, you realize the enormity of the situation...that everything you do or don't do can really mess this kid up...I REALLY wanted to get it right! When Bailey was about 4 months old, we began to notice an asymmetrical thigh (a little fat roll on her left thigh that wasn't on her right)...I thought it was cute...my mom thought something was wrong.  When I took her for her well-baby visit I asked the doctor about it and she did some rotations of Bailey's hips and legs and said she was fine.  I took her at her word.  On her 6 month well-baby visit, I explained to the doctor that Bailey didn't use her left leg as she did her right, etc.  She looked her over once more and said she was fine.  This practice continued until Bailey was 9 mos old when the doctor very sternly told me "Nothing is wrong with your baby.  You are just an over-reactive first time mom."  Well, I resembled that remark, so I went home and took comfort in the fact that my baby was just fine.

It wasn't until she began to "cruise" behind her little push toys that the alarm bells really went off.  She wasn't in pain, but she had such a gait to her walk.  She pushed that little toy around looking cute as a button but walking like she was about 90 years old.  It was now time for her 1 yr well-baby visit.  I had to work, so I asked my husband to take her to the doctor and have Bailey push her toy in front of the doctor during her exam.

(As I share this, those feelings that I felt so long ago are coming up.  Honestly, the first time in 11 years that I have allowed myself to think about that day and the horrifying few weeks and years to follow.)

My husband called me at work and said "...it isn't good...you need to come here now."  I don't even recall how I made it there in one piece but I do remember looking at that doctor and that smug grin was replaced with a placid, sick look.  She knew she had messed up and now she was in full-blown repair mode.  She had a specialist come to her office...it was way after 6pm when he got there...I knew we had to brace ourselves.  When was the last time a doctor made a special trip to see YOU?!?!  He very slowly and methodically told us about Developmental Hip Dysplasia (DDH).  I remember feeling so lost and alone...was there anyone that I could talk to? The specialist was so nice to copy all kinds of information for me from the medical books.  (The internet wasn't commonplace back then.) I just wanted all the information I could get my hands on...how was I going to save my precious baby from this "monster" I now knew as DDH?

In reading all of the materials the specialist gave me I remember being so upset at the thought that Bailey would need to wear a device called a Pavlik Harness.   In hindsight, that would have been a welcomed solution.  However, at the time, and in looking at the photos of other babies wearing it I just couldn't imagine her being made to wear that ugly thing.  I thought that was the worst that she would have to do. 
I was W-R-O-N-G!

Bailey's 1st Birthday
(The day after the diagnosis)
Thankfully, she was oblivious...