AAaaaHHhhhhh!

The last few weeks I have been so happy that things are going so well for Ava. Such an amazing feeling knowing so far her two hip surgeries have been successful. Everyday her walking, running, jumping and overall movement improves. I am so so proud of her and find it hard to believe that it was a year ago that I received the call saying Ava has hip dysplasia and we needed to find an orthopedic doctor immediately. Just thinking about it brings back so many emotions. So here we are a year later and  8 months since her first surgery and almost on the other side of it. Now that Ava is doing so well it is time to revisit her growth issues and do a follow up with her GI doctor and Endocrinologist. Ironically if it wasn't for the growth issue who knows how long her dislocation would have went undiagnosed.

This past Monday Ava had her follow up visit with both doctors. We went to the appointment with high hopes and feeling really good about her recent growth. Well my bubble was burst and it has taken me two days to write about it because I'm not really sure how I feel. We saw Dr. T (GI) first and was happy to hear Ava had no weight loss while she was in her cast but not thrilled she has not gained any since. (She is the same weight as before surgery.) She put her back on the appetite stimulant and now we wait and see. We have another check up in 3 months. I find it so frustrating! Ava is definitely eating better and more then she did in the past. (Don't get me wrong she has off days but her intake is more.) On to Dr. B (Endo). He was happy to see she had grown but unfortunately it was not enough. She is barely on the chart for height and zero percentile for weight. Really?!?! Thankfully we do not have to take her for more blood work but we will return in 6 months to check her progress. If Ava's growth pattern does not change over the next year he wants to discuss the possibly of giving her growth hormones to help her grow. Not the news I was hoping for!

I am so sad. I had high hopes that Ava's numerous doctors visits were going to come to an end but I guess that is not going to happen anytime soon. Yes Ava is tiny and slim and I have no doubt she will be petite her whole life but it is my understanding (from past visits) it's not Ava's size that's really the concern (lets face it she's not exactly from a family of giants,) it's the inconsistency of her growth pattern. At a young age Ava dropped off the charts and her progress does not have a smooth consistent curve like other children. I'm not really sure how I feel about growth hormone therapy or if we'll even do it. I guess we'll cross that bridge when it comes.

In the mean time (besides worrying about her growth) Ava's next surgery is scheduled for April 2 to remove her plates and pins. I so dread putting her under anesthesia once again but thankfully this is only an hour procedure, piece of cake compared to what she has already undergone. After her healing of both incisions Ava will continue with physical therapy to regain her flexibility. (I can't wait to see her sit 'criss cross applesauce' again!)  I can hardly believe tomorrow I will register her for Kindergarten! It's a bittersweet feeling, my baby is growing up and my constant companion will be at school full time, how time flies! Please continue praying for our little butterfly!! (May her hips continue to heal perfectly and there be a major growth spurt before September!)

Healthy Hips!!

Meet my daughter Ava. She is a beautiful, fun loving, happy, strong and brave 5 year old. She is strong willed, sassy and full of life. She has this amazing laugh and incredible smile that will just make your heart melt and she has shown undeniable courage and strength over the last 8 months. Ava was born with bi lateral hip dislocation and a year ago we had no idea. At the time she was the size of a two year old and had not grown much in a year. She threw fits and complained of pain daily. A year ago Ava's life was changed forever when her endocrinologist found her hip dysplasia. Next month will be one year since Ava got her official diagnosis and things were set in motion to heal our beautiful butterfly. I will never forget that day and the heart break I felt for my daughter. How would she endure this? How am I going to let her be put under anesthesia...twice! How will she bare the pain and spend 3 months in a cast? I remember thinking how unfair this was and why my daughter??? My eyes still well up every time I think about it but now I have happy tears and can never express enough how incredibly proud I am of my daughter. Fast forward 8 months...since her surgeries Ava has relearned to walk, run, gallop, jump, climb and is finally growing. She is undeniably happy and has a smile on her face  more often then not. She is still stubborn, strong willed and difficult at times but I would not change these traits in her for the world. These are the things that helped her endure all that she has gone through and helped her heal and regain strength.

On Friday, February 8 Ava had a follow up visit with Dr. A. Right before every follow up I get incredibly anxious. The unfortunate thing about hip surgery is there is no guarantee, each patient is different and sadly many kids have to undergo multiple surgeries to fix their dysplasia. My worst fear is the ball slipping out of socket because the socket is not developing properly but after Ava's appointment I feel confident that Ava is beating the odds and will fully recover (even with a late diagnosis.) Ava was in a great mood at the doctor's office and took her x-ray like a pro. After reviewing the x-ray Dr. A gave us the news we were hoping to hear...Ava's hips look great! (Yeah!!!) The balls are in the socket and her socket growth looks great (even with Ava's rapid growth...3 3/4 inches since surgery,) my fears were set at ease. Ironically, Ava's lack of growth may have helped keep her sockets from growing improperly. With the help of the Pelvic Osteotomy her sockets appear deep enough and are allowing the ball to move properly. Thankfully Dr. A agreed Ava's plates and pins should come out sooner then later. Being Ava is so thin you can feel then through her skin and may be cause of some discomfort (most children have a layer of fat between the hard wear and skin) and maybe keeping her from regaining her flexibility back 100%. Hopefully the first week of April Ava will undergo the last of her surgeries for her plate and pin removal.

January 2013...

June 2012...

 I have to admit most of the ride home after Ava's appointment tears ran down down my face. I am so incredibly grateful that my girl is on her way to a full recovery and I am beyond thankful for all our support and continues healing prayers for Ava's recovery. I am finally breathing a sigh of relief and have complete faith that Ava's journey will one day be a blip in her life. Come June we will be celebrating one year of healthy hips and I will forever be grateful to Dr. A for healing my girl. True to her personality, Ava has met every challenge head on and continues to amaze me with her strength everyday. I just love this girl!! We're almost there! xoxox

Winter Sucks!

Anyone who knows me well knows I am not a big fan of winter time. The cold weather is just not my cup of tea and after the first snowfall I'm ready for it to be over. To top it off, winter has always been the time of year Ava complained the most about her legs before surgery and apparently that is not going to change. There are all sorts of statistics out there that claim children with hip dysplasia or dislocation suffer from little or no pain. Sorry I don't buy it! First of all how can doctors even know what a baby or toddler are feeling?? Most dysplasia is caught before a child can talk, so of course he/she is not complaining because they have no idea it's pain they are feeling. Many babies with dysplasia are late crawlers or walkers because it is difficult for them, leading me to believe there is discomfort (or pain) making them not wanting to do it. Ava was always a fussy baby and once she could talk cried that her legs, knees and belly (we now know it was probably pelvic area) hurt. Some of her worst fits were on cold, snowy or damp days. She often woke up during the winter months and was crying before she left her bed.

My "hip" girl!

So here we are 7 months later in the mist of winter months. Ava is doing great and I see her improvement and healing daily. People that see her comment how much healthier and happier she looks. She's friendlier and more out going in many ways. (And she quickly learned she can use the fact she had two hip surgeries to her benefit.) She is still going to physical therapy to help her get her flexibility back which will improve her walking and help her fully run again. I see this amazing improvement since the cast removal in September but at times I can see it can be frustrating to her that she's not 100%. She adapts quite easily but I just want her to feel better. I can not wait for her to be able to do things automatically and not have to work so hard. When she gets tired her left foot swings out we have to remind her to concentrate to hold it straight or she will bare her weight with her shoulders making her "waddle" worse. When she runs her "waddle" or limp is very distinct, it's apparent somethings off. I often see people staring which makes me want to scream. Sometimes I feel this need to say "She had hip surgery."

So bringing me back to my complaint about winter... there have been a few mornings recently that Ava has woken up cranky and teary complaining her boo boos hurt (where her plates & pins are on her femur) or her knees hurts. When Ava says her knees hurt I want to throw up because that was always her number one complaint before surgery. Each time this has happened it has always been on a damp cold day. Last week we were picking Jack up from school, it was very cold out and as we started walking towards the school (this is huge for Ava to want to walk this distance) she says to me "Mommy it's to cold out, my legs ache so much." My heart just broke for her and I just wanted to cry. Is this what it's going to be like for her  cold weather?? Will it get better or will it be something she adapts to?? I don't think her doctor can give me that answer because everyone is different. Ask anyone that has had a broken bone or surgery they always complain of a pain or ache in cold weather. Like everything else Ava takes this in stride and keeps moving forward.

In the last few days David and I both noticed Ava is limping. When we ask her if something hurt she replies "No." She is not complaining of pain but will say her legs are tired. She refuses to do her stretching exercises at home (she's a stubborn one!) which is not helping. My assumption is the cold weather is making her stiff which in turn makes her less flexible. Anyone with a "hip" child knows what anxiety this can cause when you see a limp. All the worst possible things run through your head and you begin to worry even more (if that's possible.) So for me (and Ava) winter can not end soon enough! We go back to visit Dr. A on February 15, I can not wait for the appointment. We will do a follow up x ray (I know it will be perfect!) and hopefully we will schedule her final surgery to remove the plates and pins. In the mean time keep Ava in your thoughts and prayers, may her pain and discomfort subside and let her enjoy being 5 like every other child. I'm not sure I'll ever stop worrying (what parent doesn't) but I look forward to the day this is not on my mind 24/7. as always I'm so proud of my brave little butterfly! Hurry up Spring!!! XOXOX

So Blessed

Hard to believe Christmas has come and gone and we are now quickly approaching the new year. I try to remind my kids that Christmas is not only about receiving but giving as well. It's a time to be thankful for all that we have and to remember how blessed we are to have so many incredible people in our life. Our family has had a rough year but finally I feel like we have turned a corner. Ava is doing incredible!! Each day she is moving better and she's back to all her "normal" activities. Sometimes it's hard to believe she had two hip surgeries. I am so proud of her!

Our healthy girl!

All Ava's x rays have looked great and I'm happy to say that she's had two successful hip surgeries. I have heard so many stories of children having multiple surgeries on the same hip, how can I not feel blessed!? In February we return to Dr. A's for a follow up. We will then set up Ava's final surgery to take the plates and pins out of her femur bones. By no means do I look forward to another surgery but knowing it will be the last one makes me anxious to get it over with. I like to think we've all learned some life lessons through out this. I know it has changed me and has giving me Faith I never had before. I will never under estimate the power of prayers. There were days that was the only thing that got me through. I am so proud of how Ava has handled herself  and I love the confidence she displays when she tells people " I had hip dysplasia but I got my hips fixed." It cracks me up to her her say to her brother (and little cousins) "Be careful I have scars and plates and pins in my legs." I look forward to 2013 for new beginnings. As of June (as long as we stay on track) Ava will be considered fully healed. I look forward to that day and this will be all behind us. In the mean time on January 3 Ava will return to the endocrinologist for a follow up. He will check her growth and more then likely send her for blood work to see if her hormone level has risen. I believe if it has that Ava's hip dislocation was the reason her growth slowed so significantly. I pray that is the reason and we are now back on track.

Family : )

With all the recent tragedy around us take a moment to remember how blessed you are. Hug your children and loved one tight and know each day is a gift. To all the Mom's and Dad's who are currently dealing with hip dysplasia, hang in there. One day this will be a blip in our children's lives. The road is not always easy but keep your faith to make it through. I know I am grateful for all that we have, especially our health. Have a happy and healthy New Year everyone!! XOXOXO

Life as we knew it...

Ava's strength amazes me! She is slowly but surely getting stronger and beginning to move fluently everyday. At our last visit to Dr. A we were told Ava was fully healed (even though we're still working on the walking.) She was cleared to resume normal activity and to start getting back into her "normal" routines. Normal??? What is normal anymore? I love seeing Ava move around more and more but to me "normal" isn't until she moves like every other child. Normal isn't until she doesn't have to think about every step she takes or until she doesn't cry or say she's scared when she has to go down stairs. I just want her life to resume the way it was before just without pain. Will we ever be "normal" again? Will the worrying ever stop? Will ever go without my heart in my throat when she's playing in a group of kids? I guess time will only tell just as time is slowly healing my girl.

Ava & Kate (one of her besties.)

Now that I got my neurosis out I can tell the positive things happening in Ava's life. This past week Ava has grown in leaps and bounds. Her recovery has taken a huge leap forward and it's just a matter of time before she's a hundred percent. Ava's physical therapist recommend she use a mini trampoline to help her bare weight on her hips properly. Thanks to a good friend we we're able to borrow one and what a difference it has made. When bouncing up and down she is forced to use her legs equally and it helps strengthen all the muscles in her legs and hips. In the last week Ava has started walking less "soldier" like, can walk up and down stairs using the railing or holding a hand, can alternate legs while walking up stairs (who knew what excitement this would cause) and most recently started riding her scooter. The biggest thing of all is Ava went to our local tree lighting and to cut down our Christmas tree without a stroller. She walked on her own for huge lengths of time and barely asked to be picked up. I can't ever remember a time when we took Ava somewhere and she didn't cry and tell us her legs and knees hurt. To see her happy and pain free makes every minute of surgery, every minute in a cast, the exhaustion and frustration worth it!

First day of Pre-K.

The one thing we learned about Ava is the more she's around her friends, the harder she works. We been having more play dates and getting out more to help her regain her strength and endurance. Today was a huge day for Ava...she started Pre-K!! I'm happy to say she did fantastic but Mommy had mixed feelings. I know, I know, you think I would be jumping for joy to have a few hours to myself but for the last 6 months my life has been consumed with taking care of Ava to help her heal, I'm not quite sure what to do with myself now. I'm sure this will be short lived and I'll find a million things to do or maybe I'll actually sit still and enjoy the peace and quiet. I was very excited for Ava because she was ready for school but the worry wart in me was nervous as well. She has only been with family for the last 6 months and for two hours I had absolutely no control of her environment around her. Well she survived her first day and I'm sure each day will get easier (for me that is, she has this down pat!)


In May Ava will return to the OR to have the plates and pins removed from her femurs. In comparison this surgery should be a piece of cake, one hour surgery and the healing of her incisions. I'm not looking forward to another surgery but I am looking forward to being on the other side of this. Who knows if my worrying will stop but I know seeing my girl so happy makes me beam with joy. Every day we are a step closer to Ava being fully healed. We are so blessed and I have all the confidence in the world that her hips will remain in place. I'm so so proud to be the Mom of such a brave strong girl! We're almost there! XOXOX

Giving Thanks

I have so many things to be thankful for this year. I am thankful for my huge family that provided me an incredible support system. I am thankful for my friends who let me vent, cry and helped me laugh when I needed it most. I am thankful for my wonderful husband who put up with my 3000 mood swings when I was completely stressed out (and still does.) I am thankful for my Jack. He is an incredible big brother and so supportive of his sister. I am thankful Ava is healing and she had two successful surgeries.

It is hard to believe it has been 5 1/2 months since Ava's first surgery and she has been cast free for 10 weeks. The day this whole process began I couldn't even imagine how we were going to get through it. But here we are! My baby is on the mend and every day she is getting stronger. We recently had a well visit at the doctor and I am thrilled to say she grew 3 inches!! For the first time since she was 1, Ava is on the charts. My heart exploded when I heard the news! I am so happy to see her moving in the right direction. We also had a follow up with Dr. A. Ava had a stand up x-ray to see how things look now that she is moving. The x-ray looked great and Ava's hips are looking good. She is continuing physical therapy and hopefully she will be walking normal again soon. Dr. A said she is healed now and gave us the go ahead to start getting Ava back into her normal routines. Yeah!! She's going back to school! We have a follow up visit in 3 months and we will then schedule the last of her surgeries to remove the plates and pins in her femur bones. I am not looking forward to another surgery but compared to the other two it should be a piece of cake.

I look forward to the next few months as Ava learns to move better and we can say she is 100% healed. I am in awe of her strength and watching her start to dance again makes me so incredibly happy. As a family we had a challenging few months but we made it through it together. I am so blessed to be a Mom of two awesome little people and so proud of both. Happy Thanksgiving and thank you for all the support! XOXOX

Progress...

I haven't posted much lately about Ava's progress but like everyone else in NJ we have been consumed with Hurricane Sandy. We are so thankful we were only without power for 4 days (wish I could do more for my friends who are STILL without) and even more thankful Ava was not in a cast when Sandy roared through! I'm positive our experience would have been very different! That being said, we are still taking each day one at a time. It has been 3 1/2 weeks since she took her first steps and her progress since has been amazing. I am so proud of her strength and her determination.

On October 28 Ava had her 5th birthday party, this was a turning point in her healing. She finally ditched her walker and did her best to keep up with her friends. To see my girl so happy and act like her old self was an awesome feeling. It still can bring tears to my eyes thinking about how happy she was that day (and has been since) while dancing with her friends. It was so nice to have some normal activity in our life. Being around her peers definitely has encouraged Ava to try harder and she has become more determined then ever to walk. Since that day she is walking around more and doing a lot less crawling. Monday when we went to Physical therapy, Miss Jill was very impressed with Ava's movement even though we missed a week (thanks Sandy.) The movement is there but now we need to work on strengthening her stomach and hip muscles to make the movements more fluid.

It has been almost 8 weeks since Ava's cast was removed. The difference from day one til now is amazing, although I'm not sure I expected it to take this long. Don't get me wrong, I am incredibly proud of the strides Ava has made but I just want my daughter to be herself again. I want her to walk without having to concentrate so hard, I want to hear the pounding of her little feet running around the house, I want her to be able to keep up with her friends and I look forward to the day my heart is not in my throat when she's around other kids because I'm so scared someone will knock her over. On the flip side my heart soars for all things she has relearned since surgery...kneeling, crawling. standing without help, getting up without help, starting to dance, peddling a bike and walking. The look of pride on her face after accomplishing a new task is priceless and the excitement she shows when showing off her new movement melts my heart. Tonight was another proud Mommy moment... for the first time Ava walked up a whole flight of stairs (holding the railing and my hand) alternating her feet on each step! This is huge!! She hasn't walked up stairs in almost 5 months!!!!

Ava and her friends.

I know soon enough Ava will be her old self (hopefully not as cranky since she seems to be pain free.) I can not believe it's been almost 8 months since her dislocation was discovered! I am thankful everyday for the doctor who finally discovered it and for the doctor who performed two amazing surgeries. I look forward (and as always) slightly nervous for November 16...Ava first x-ray standing up. Please, please let those hips be in place!! I pray for another perfect x-ray and that her doctor is happy with her progression. Please do the same! So incredibly proud of my amazingly strong girl!! XOXO