Friday, August 31, 2012

Yeah Ava!!

video

Each day Ava is gaining strength back. I added this video for those of you not on Facebook. We are so proud of our girl!!

I See the Light!

Today was the day Ava went for another follow up x ray. I have to admit I was really nervous. What if we had done the exercises wrong?  Did I move either hip out of place when I was taking her in and out of the car?? I hope Ava didn't push her hip out with all her wiggling and moving.  A thousand things went through my head and I prepared myself for another 3-4 weeks of this cast. All I know is I could not wait for this appointment because today was the day we found out when Ava's cast would be removed. Thankfully Ava finally can handle sitting in the car and we had a peaceful ride to East Brunswick. (I was worried about this too!)

As always we started our appointment with the x ray. After Dr. A reviewed it he came in the exam room to check Ava's hips out. I carefully placed Ava on the exam table and Dr. A explained he was going to take the bar out and do the same exercises that Mommy and Daddy do everyday. Ava was  very sceptical but laid back anyway. The first thing Dr. a said was how impressed he was that Ava was laying so flat without pain, most children can't do that in such a short amount of time. (Great news!) Next he removed the bar and did the scissor motions we have been doing everyday. After he wobbled her legs back in forth to check the movement of the ball in the socket. Ava let him do all this with a smile on her face and no complaint of pain. (That's my girl!) After putting the bar back in Dr A said "Okay I'll see you in two weeks to remove the cast. The x ray looks great and her movement is good." What??? Did I hear you right??? That is the best news ever!!!! I wanted scream with joy! TWO WEEKS!!! Princess P is almost done!!!!!

Can you tell I'm excited??? I see the light!!! NO more cast! My girls legs will be free at last!! After I calculated that September 14 will be the greatest day ever, we discussed what will happen after. Dr. A said to expect Ava to be fully walking again 3-4 weeks after the cast removal. Most kids regress and begin like a toddler again...pulling themselves up on things, cruising (holding on to furniture) and finally taking steps on their own. (Okay we can deal with is.) Also start looking for a physical therapist in our area that takes our insurance and that has experience with pediatric physical therapy. Ava will have to go to physical therapy because he wants her gait (the pattern in which a person walks) monitored. Basically he wants to make sure there is no waddle, the most common sign of hip dysplasia. Okay we can do that too! It will take about one year for Ava to be completely healed. There weren't many restrictions... no trampoline or monkey bars (the number one reason for a child visiting an Orthopedic doctor) and he recommended swimming and bike riding to strengthen her muscles.  Hello swimming lessons and since Ava found out about the surgery she has said she wants a bike with training wheels when it's all over...the count down begins!!!

We happily made our next appointment and I immediately called David to tell him the good news, then the tears of joy began. I can not express the joy I was feeling at that moment. Ava is in the home stretch!! We can do this! I know the first couple weeks will not be easy but Ava has amazing strength and will. I know my fighter is going to be running and dancing in no time. Ten hours of surgery, 11 hours of anesthesia,  7 days (total) in the hospital, one blood transfusion, lots of morphine, two Spica casts, one Petrie Cast, countless sleepless nights, tons of tears (Ava's and mine), pot after pot of coffee (me!), numerous bottles of wine (me & David) = one incredible big brother, one wise cracking little girl, two exhausted parents. Exactly three months and two days after the first surgery our little butterfly will be set free! I am so proud of Ava and so grateful for her healing!! Thank you!!! Thank you!!! Thank you!!! Thank you for all the love, thank you for all the support and most of all... thank you for all the prayers! Two weeks from today you can find the four of us sitting on the beach...the first place Ava wants to go after her legs are freed. Anything for you Ava girl!



Saturday, August 25, 2012

Happy Tears

I don't usually blog twice in one day but I had to share my girls accomplishment. Our day started out rough and then it got rougher... Ava wanted to attend her baby cousin's first birthday party. It was taking place in PA, an hour drive away. I was skeptical about going but Ava was crying how she missed Mason, Jayke and Brice and had to go. After asking and asking over and over I gave in against my better judgement. Our last car experience was horrible but Ava said she was ready. I got Ava settled in her car seat and the first part of the drive was going well. Then about 25 minutes into it Ava lost it. She was hysterically crying and screaming that it hurt. I immediately stopped the car to see if I could adjust her at all to make it better, she insisted we keep going even though she was still crying. Five minutes later she was screaming again "It hurts so much, make it stop! I miss my home!" I turned around to head home but now we had to drive 30 minutes back. It was horrible! Ava screamed and cried the whole way. The worst was her saying "Mama help me!!" By the time we got home we both were crying hysterically, I was never so happy to see my house before. I finally got Ava in the house and settled, and finally after an hour we both were much calmer and Ava was happy again.

By the time David got home I was exhausted and drained! It had been a long afternoon, we were both happy to see him! As we settled into our night, David did Ava's leg exercises with her. After she was done she scooted herself to the end of her crib mattress and rested her feet on the ground, she told us she wanted to try and stand. With my help, Ava stood for the first time in 11 1/2 weeks!! Yeah Ava!! I am so proud of my brave girl!! This time I had happy tears for my girl. After Jack got home from the party Ava could not wait to show him her newest accomplishment. Jack cheered her on like he always does,such a great big brother. Today started out crappy but ended with hope. Ava proved she is healing and before we know it she will be standing on her own! I look forward to many more happy tears!!

Here we go.....

I am so proud!
You can do it Ava!
That's my girl!!!



Rough Mornings

Slowly but surely Ava is getting use to her cast, as are we. This thing is awkward and lifting it is hard. I know this will never get easier but over time Ava will have less pain and not cry or scream when we move her. When Ava is sitting still and playing she is extremely happy but try to move her watch out. She's still scared and any sudden movement seems to hurt. Oh my poor baby! But I have to stay by far, mornings are the worst. She has been sleeping well overall but when she wakes her muscles are stiff and moving hurts. She's a mess! She cries and says "Don't move me!" It is so hard seeing her like this and not being able to help her. We give her Advil to help but it's not instant relief. I'm her Mom, I should be able to make her feel better. I feel so helpless.

This morning was particularly bad. Ava woke around 6am and wanted to come in bed with us. She cried a little when I moved her but after massaging her feet (a trick that always works) she fell back to sleep. She woke again around 8am yelling "My leg hurts!!" Ava complains often of her right leg being in pain, this is the side of the second surgery and hasn't had as much healing time. She was crying and talking in the saddest voice, it just broke my heart... "It hurts so bad!" "I just want it to stop! Make it go away!" "When is this going to be over? I want this to be done!" "I miss running, jumping and playing Mommy!!!" "Mommy I just want to play!!" "Mommy don't move me, it's going to hurt!" Oh Ava!! I wish I could change it all for you. Watching your child in so much pain is almost unbearable. I am so sad for her and would do anything to make it better.

I'm glad I can say after moving her through screams she did calm down. Her Advil kicked in and once she started to move around the stiff muscles loosened up, (then Ava's day always gets better.)  Once Jack woke up and came down to play with her, life was suddenly better. I am so proud of Jack and how patient he has been with Ava. He plays with her for hours on end (even when he's getting as frustrated as we are) and helps in any way he can. Jack can always bring a smile to her face and make her laugh hysterically. Jack is an amazing little person who has the kindest heart. He has a constant worry and concern for his little sister. It makes me so sad that at
My loves!
7 years old he worries so much.  I could not be prouder of my two kids. They have endured so much this summer and I am looking forward to our lives getting back into our normal routines. I pray both my babies have all the strength they need to get through the last few weeks of this. The end of September can't come fast enough!!

Wednesday, August 22, 2012

Adjustments....

It has been over 24 hours since Ava had her Petrie cast put on...it has been an interesting 24 hours. I thought nearing the end of these casts would be easier, boy was I mistaken. For one, Ava does not like to be touched or moved. She has soreness in her now exposed muscles but she is also scared. Anything new she screams like I've never heard her scream before. The neighbors probably think we're beating her, it's that bad!! Jack was playing across the street at his friends house and he said you could hear her loud and clear. All you have to do is mention moving her and the screaming begins.. (Oh this needs to stop.) Yesterday afternoon went pretty smoothly until it was time to exercise Ava's legs. Oh boy, I was just as frightened as she was. What if I hurt her or pull a hip out??  We were both scared. I have to say it went well, about half way through the scissor like movements Ava realized it just felt weird but didn't hurt. Yeah another hurdle crossed! The real drama began right before bed, Ava decided holding in her pee was a way better idea then allowing one of us to carry her to the potty. She couldn't hold it anymore and let loose all over the couch! Augh!! Really Ava? That was a much better idea?? Now her Petrie cast got soaked for the second time that day. This kid is going to stink by the end.

Sitting up... but unsure.
Okay I completely understand why she's scared to move but the complete panic that overcomes Ava does not help. It's very awkward to lift her, we're still figuring it out. There is just no good way to do it! When I lift her up I feel like her casts are weighing her legs down. Trying to hold her upper body and lower body at the same time is very difficult. (I can't imagine that this is going to get easier.) Also Ava is itching and scratching herself like crazy. Where ever she sits or lays she leaves behind a pile of dry skin. Ewe!! This to shall pass... hopefully quickly. Thankfully Ava had a great night sleep. Small blessings. I woke to the sound of her and Jack talking happily. I looked at the clock and it was 7:15am, Yes!!!! First thing Ava said when I peeked in the room was "Mommy! I don't hurt as much!" Oh Ava, music to my ears. After screaming all the way down the stairs Ava calmed and didn't freak quite as much when we did her leg exercises. Maybe I'm finally getting through to her that it's only going to get better. It's hard to explain to a four year old that although it may hurt some, the more you move the muscles the quicker it will stop hurting. That's a big concept to absorb. My poor Ava! Going to the bathroom is still an issue. Once the pain goes away it will be easier then in the Spica cast. She can sit at a 90 degree angle now and will be able to balance herself. Unfortunately Ava is scared! Not just scared but a cat about to be thrown into water scared. This morning she actually was holding me so tight that she grabbed my hair and I thought a fistful was going to come out. My heartbreaks for her. I don't know what to do about this but she can't keep peeing everywhere. It can only get easier, right???

So proud!!
I'm trying very hard to focus on the positive. Ava slept well last night (hopefully this will continue), she's eating well (for her) and she's in a much better mood today. The best thing of all, Ava pulled herself up into a sitting position! (Maybe she is hearing us through all the screams.) Now if we can get her over the fear of the potty and riding in the car we'll be good to go. As I sit here and type Ava is sitting herself up and laying back down as she yells "I'm doing sit ups!" Amazing a difference a day can make! Everyday she will get stronger and stronger and our little butterfly will be back in full strength. We have one remarkable little girl! I can not tell people enough how much I admire her courage and strength. We're almost there Ava girl! We're almost there!!


Tuesday, August 21, 2012

Cast Change...

Waiting for cast change.
Today Ava went for her cast change from the Spica cast to the Petrie cast, should be easy, right??? We prepped her well over the last few weeks, it was going to be a piece of cake compared to the two surgeries. Through Ava's eyes not so much. It started last night with her telling us how she didn't want to get her cast changed and how she was fine just the way she is. Oh no, this is not good! We had to be at the hospital at 6:15am for her 7:30am appointment. Ava woke on her own around 4:30am... crying. "I don't want to change my cast!" There was no doubt, she was scared. Scared of the unknown, scared of being able to move more. As difficult as 10 weeks of being in a Spica was, we had it down pat and she was comfortable. She cried off and on the whole ride and while we waited. We got her to smile here and there and many of the nurses remembered her but she was not convinced this was a good idea. Dr A and came in for our consult then it was time to head in. Ava was very distraught as she was wheeled into the OR, she kept saying through tears "Please don't hurt me!!" I was heart broken. I hate that she has to endure so much and I can't take any of it away for her. I was escorted out in a haze of tears...let the waiting begin.

New green legs!
Before we knew it, Dr. A was walking our way. Wow that was quick! Exam, x ray and cast change took just about an hour, gosh that was nothing! Dr. A brought us into recovery while he explained the cast. As he pulled the covers off Ava it was not what I expected. Not sure what I thought it would be like but it was two green casted legs with a wood bar in between. Oh! This should be fun! He went on to explain how to take the bar out and twice a day we needed to exercise Ava's legs in a scissor movement, back and forth and side to side. Ava's hips look great and are still in place! Hooray!!! We needed to see him in a week for our post op visit and soon as Ava was ready we could head home. Ava came out of it okay but she was in pain. She was not happy about the IV being in nor with the interesting new cast. After much coaxing I got her to drink some apple juice and her vitals we're good. Yeah! We we're going home!! Now the fun begins,how do I move her??? Hmmmmm this should be interesting. David went to get the car and Ava's stroller and I got Ava dressed. The nurse took the IV out and all Ava wanted was for me to pick her up. As I began to move Ava she began to scream bloody murder!"It hurts!" Oh this is not good. Through screams and tears (hers and mine) we made it to the car. David helped me get her safely in her car seat and I climbed in the back with her by her request. Homeward bound we go!

Ava cried the whole way home. Every little bump Ava screamed "It hurts!" "I want to be home now!" At one point she even yelled "Stop hurting me!!" Poor David, he was doing in best but the pavement is just not smooth. Wow there are a lot of bumps and dips in the road, my poor girl. After an excruciating hour for all of us, we were finally home. Now getting her inside... Ava decided she wanted to sit in the car for a minute. She was anticipating pain and was in no hurry to be moved. David ran inside and set up her crib mattress she loves to lay on and I tried to calm Ava. Next thing I know she's yelling "I have to go potty!" and the flood gate opened. OH jeez! Pee was going every where! Through the pillow she sits on, down her car seat, onto the regular seat and puddling on the floor. I lifted Ava up as quick as I could while she yelled in pain. Seriously 10 weeks in  a Spica cast and not one accident, 3 hours in a Petrie cast and urine everywhere. I"m sure Ava's mole skin lining the cast needs to be changed but Ava is too scared to let me survey the damage. Once her pain subsides we'll check it out but until then I'm letting her be.

It has been an exhausting day already and it's only 1:30pm, I'm drained. I pray Ava's pain goes away quickly and she  starts to enjoy her freedom. She was such a brave girl! I'm sure the next few days will be a roller coaster of emotions but I'm sure in no time Ava will be back to herself. My little fighter is one step closer to this all coming to an end, Ava's the strongest little one I know!! On our way to strong healthy hips!!




Friday, August 17, 2012

In the mean time...

It has been two weeks since I last blogged. Quite frankly it's because nothing all that exciting has happened. Ava is in her tenth week of her Spica cast. I know! I know! For everyone around us the time has flown by and it's hard to believe we are nearing the end of summer. For me and my family it has been an extremely long ten weeks!! On Tuesday, August 21st Ava goes for her cast change from the Spica to the Petrie cast. I am so happy the day is almost here but also my nerves are a wreck. Dr. A will move her hips and then take an x ray to see if the ball stays in the socket. As long as it stays put she will move on to the Petrie cast or as Ava says "My green frog legs." (Yep, the next color on board is green.) Thankfully this cast will allow more movement for Ava but I'm a little worried about her legs being casted straight. I'm sure once again there will be a learning curve just like with the last two. The cast change will be nothing compared to her two hip surgery but it doesn't make it easier to watch your child be put under anesthesia. This will be the fifth time in the last 2 1/2 years! Yikes! I wish it wash the last, unfortunately those plates ans pins need to come out a few months from now.

70 piece puzzle..Taadaah!!
I can't say it enough, I am so proud of my little fighter! Ava has handled herself amazingly well over the last ten weeks. Can you imagine being four years old and not being able to move?? All the independence instilled in you is all taken away in an instant! Don't get me wrong, she has some miserable days (and so has Mommy.) She can be moody, cranky, demanding and frustrating (so can Mommy.) She also laughs and smiles a lot. Ava loves being tickled and loves when I massage her feet. She can now color in the lines, cut well with scissors, paint rainbows and do 70 piece puzzles on her own. She also says she's never going back to school, she has become very attached to Mommy and Daddy. (Guess what Ava, once you get the go ahead, your going!) That will be the best day ever,it will mean she has healthy hips. We're almost there!! After the Petrie cast is on, only 3-4 more weeks. Yeah!! I can not wait until my Princess P is walking, running and dancing again! That will be the best day ever! I get tears in my eyes just thinking about it! I will never take the simple things for granted again. My heart goes out to every child who has to endure this process. We are so lucky to have such a great support system, it has made a difficult road so much easier.


Please keep Ava in your thoughts and prayers Tuesday when she returns to the hospital. We need those hips to stay in place! Thank you to everyone who has been a part of Ava's journey. We are so thankful and so blessed! We're almost there!! My Ava will be up and dancing in no time! xoxox

Friday, August 3, 2012

Post Op X Ray #2

It has been 2 1/2 weeks since Ava's right hip surgery and today was her post op x ray. This day could not come fast enough if you ask me . . . it was the moment of truth. Is her hip still in place? Is it healing properly?  After arriving at Dr. A's office Ava had her x ray and we patiently waited for Dr. A to come in and tell us how things looked. He brought the x ray up on the computer screen and I saw the most beautiful x ray I've ever seen. . . Ava's two perfect hips!! It took all I had to hold back my tears of joy.  Right there on the screen was proof Ava was going to be okay and yes there is a light at the end of the tunnel. She made it over one more hurdle but we're not out of the woods yet. She has 2 1/2 more weeks in her purple Spica cast and on August 21 she will have a cast change to the Petrie cast. We will once again return to the hospital so Ava can be put under anesthesia. Her purple cast will be removed and an exam will be giving to make sure when the ball rotates in the socket properly, after an x ray will be taken. If the hip is still in the proper place they will put the Petrie cast on, if not the hip will be manipulated back into place and another Spica cast will be needed. 99% of the time things go as planned, please let Ava be in that 99%. The Petrie cast will allow Ava to have full movement in her hips  such as sitting, rolling over and possibly standing. Her chest, belly and hips will no longer be casted, yeah! This cast will remain on for 3-4 weeks and will be removed in the doctor's office.

Happy Girl!
Waiting.....

 Ava has been in a Spica cast for 53 days, that's 7 1/2weeks! That's it! To everyone else I'm sure the time is flying by but for our family it's at a snails pace. Over all Ava is doing great and by far it's the hardest on me. Ava has Mommy on the brain and there are days I barely get a second to myself. She has started complaining about being in the cast and has asked many times "How much longer?" I'm tired. Wait that's an understatement. . . I'm exhausted! She is still not sleeping well and there's not a moments rest for the weary. It kills me when I hear her say "when I use to run, walk and ride my scooter. . ." At times my patience runs thin and we argue, followed by Ava stating "Your being so mean to me!" while she sobs hysterically.  Bottom line, we've all had enough. I'm so grateful to my friends who have helped me get through the more difficult days. I pray the next 2 1/2 weeks go quickly and her hips heal properly. Ava has endured so much since her first surgery, I look forward to seeing her cute little legs again. We're almost there and I know my little fighter will handle what ever comes her way next with her usual sassy style. Please continue the prayers, we need these hips to stay in place! xoxo



.