Ava

Tomorrow is Ava's surgery. I can't even begin to describe the roller coaster of emotions I'm going through. This past week we tried to make everything super special for Ava. It started off with her first dance recital. I sat in awe, with tears running down my face as predicted, as my sweet girl smiled and performed each move perfectly. Well, as perfect as a four year old can. We celebrated after with our family. It was such a nice day and Ava did fantastic. We are so proud of her. Mid week we had a girls day with a few of Ava's friends. We went to her favorite park, ate lunch at Hot Dog Johnny's (best hot dog place ever) and finished with ice cream at Herbies. I loved watching Ava laugh, run and play with her friends. On Sunday we took Ava to her most favorite place.....The Beach!! what a perfect day with her cousins and Jack splashing and dancing in the waves. There was moments through out the week that I was so emotional watching Ava with her friends and family. I know three months will pass quickly but right now it seems like eternity.We are so grateful for the support we have around us...from family, friends, co workers, clients and neighbors. The generosity and kindness our daughter (and we) have received is amazing. It has brought me to tears on more then one occasion. We are so blessed in many ways. As I gave Ava her bath tonight I got teary eyed knowing this will be her last one for several months. Before bed Ava asked a lot of questions and hopefully I put her mind at ease. We are in for a crazy ride but as a family we will get through it. Please pray for Ava and keep her near your heart tomorrow. I know my Princess P will do amazing! xoxoxo

The count down begins...

Today was a big day for us, the pre op visit with Dr. A for Ava's upcoming surgery....to me this made it all real after months of talking about it. I have to admit I was super anxious, this was it...the count down would begin. Last night I prepared Ava for her checkup. Her first question was "Do I get my cast tomorrow?" After reassuring her that this was just a checkup and to talk to Dr. A about the surgery she seemed fine. For the first time in months she climbed into bed with us, she was even slightly whimpering in her sleep. How could I kick her out? She was definitely nervous about today and needed to be close. We had a crazy morning doing errands. One of our stops was at Walmart, knowing the drill of the impending doctors appointment she convinced me to buy her, her 36th My Little Pony...I reminded her we usually get something after her appointment for being so good and brave. Her response "Of course I'm going to be good!" She hasn't disappointed us yet , so Cherry Pie was all hers. Next it was off to pick up daddy from work. Thankfully my friend Meg armed us with questions to ask. Quite frankly when I think about the surgery all I can do is cry, my mind was blank when I was trying to come up with a list.

Ava's appointment began with two more x rays and a quick exam to determine if one hip was worse then the other. Both hips are about the same so he decided the right hip would be operated on first. Dr. A began explaining how things would go...the needed to cut the femur and remove about a 1/2 inch of the bone, it will then be held together with a plate and pins so the bone will heal properly. By doing this it allows him to pull the ball down and  put it back in the socket with less pressure. Also the socket will be cleared of anything in the way and all ligaments, tendons and muscles will be stretched to allow the hip to be in the proper spot. After the Spica cast will be applied to keep everything in place while healing. The surgery will take approximately 4 hours and she will be in the hospital for 3 days. After 2 weeks Ava will have an x ray done to make sure all is healing well, if so 3-4 weeks later they will repeat the surgery on the left hip. I was very proud of myself today, I did not cry at all! I thought for sure I would be a mess but I did great. The biggest relief was finding out Ava would be casted in a sitting position. What??!! This is fantastic! It wipes out so many worries, we had been under the impression she would be in her cast straight legged. She will fit in her car seat, be able to sit in a stroller, be carried on our hip and sit up to play games or do crafts. This really changes how I view things. Don't get me wrong the next few months aren't going to be easy, I'm sure we'll have rough days but she will be way more portable then I originally thought. The next great news we learned was after the second surgery her cast may only be on for 6 weeks!! This is huge, he had originally told us a possible 2-3 months after. This makes a total of 3 months in a Spica cast opposed to 5 months....the light at the end of the tunnel is closer. Dr A even gave Ava a chance to ask questions...her only question "What color will my cast be?" Dr A's response "You look like a pink girl to me." Ding ding ding! We have a winner, pink it is! I think Dr A put Ava at such ease today that she was excited to tell Jack about the color of her cast and even asked at bedtime if tomorrow I could show her a picture of what it will look like.

Life can be challenging and overwhelming at times but I believe the easiest way to deal with it is to keep everything in perspective. The next few months will be rough but we are making a decision that will hopefully allow Ava to live her life without pain. It is a blip on a long road of life ahead of her. I have many close friends going through difficult times right now and unfortunately their ends may not be as happy as ours. My heart goes out to each and every one of them and pray for their strength and healing. Dr A has an extremely positive attitude about Ava's procedures and being that she is so healthy there is no reason for things not to go as planned. A year from now she will be healed and back to her normal activities. It's great to have such great resources these days with the Internet and facebook but sometimes you need to step back. I have been researching what is ahead of us and driving myself crazy. If you hear the worst then you begin to believe that is what will happen. I decided today I am going to approach this with the most positive attitude possible. I have faith that Ava can be that story of things going as planned and the story people read to have hope and faith. I'm sure the months ahead will be challenging and I'm sure many tears will be shed but my daughter is a fighter and will overcome this like no other with her sassy attitude. Tomorrow we will watch Ava dance in her first dance recital. I'm sure tears will be streaming down my face as I watch. From here on out it is one day at a time and all in perspective.



Ava's growing My Little Pony collection...I'm sure she'll have a 100 by the time this is over!

Check ups....

Today was a check up with the GI Dr. and the Endocrinologist, Ava gained 1 lb and grew 1 inch since February. Yeah!! This is a move in a positive direction but not as much of a gain as they had hoped. Dr. T (GI) stressed the importance of keeping her weight up while she is in her cast. Children tend to lose weight after undergoing major surgery so we really need to be aware of her intake. Ava has little fat on her body. The less fat on the child's body can cause the bones to rub against the cast and can cause bed sores. Augh!!! Something else to worry about. Hopefully we can keep Ava eating and prevent any lose of weight. Dr. B discussed Ava's hormone levels with us. Her levels are now closer to the range she is suppose to be in, so he does not feel it is necessary at this time to do a MRI on her pituitary gland. He wants to keep a watch and see where her growth goes from here. Both doctors agreed that we need to keep doing what we're doing and we will bring Ava back for a check up after her cast is off.

Thankfully all the tests that Ava has been given have come back negative. I'm taking this as a positive and so glad that what ever is causing Ava not to grow is not serious. From here on out our focus will be on getting Ava through her surgeries and helping her endure being in a Spica cast for months. 3 weeks from tomorrow Ava will undergo the first of her two surgeries. I have so many emotions about what my baby will go through. I pray time will pass quickly and there will be no complications. The offers and kindness offered to me and my family is overwhelming. We have a wonderful support system around us that I am so grateful for. I'm sure Ava will get through this like a champ but I still hate this for her. I hope I gain a tenth of the courage my daughter has shown me over the last few months and I know before we know it we'll be on the other side of this.

Raising Awareness

Until 3 months ago we knew little about Developmental Dysplasia of the Hips (DDH). I knew as infants both my children were tested in there monthly checks. I remember the doctor saying "I'm checking the hips now" and a bunch of crazy movements done but never was I giving information about DDH. Most people don't know much about it or the seriousness of it. The older your child is diagnosed the more evasive the treatment can be. Recently the month of June became National Hip Dysplasis Awareness month. It is so important for more people to understand what DDH is and to spread the word. In other countries it is the norm for an infant to get a scan at 1 month to check for dysplasia or dislocation. In the US a baby is only scanned if DDH runs in the family or if your baby was breech, just to name a few. Full dislocation is even harder to diagnose until your child is of walking age and every month she is walking damage is being done.

Unfortunately this is what happened to Ava. She was born with bilateral hip dislocation. I can't change the course our life (or her) life has taken but we can help raise awareness to prevent other children from going through what Ava will endure. I wish I had known more about DDH and knew what to look for. As a family we want to help raise awareness and get the word out. We are raising money in Ava's name to help the research of DDH and hopefully in the future make it the norm in the US for babies to be scanned. You can purchase DDH bracelets from us for a $1 (or more if your feeling generous).  Or you can go to  www.hipdysplasia.org and make a donation. Thank you to everyone for your love and support. xoxoxo

Prep for surgery

On Friday we received a letter in the mail for Ava's blood test results from the week before...Ava's hormone level went up! Yeah!! It went from 52 to 65 in 3 months. That's only 10 points below normal levels. We are really looking forward to meeting with the Endocrinologist next week to find out what this means. I am so happy to have something move in the right direction. Now hopefully they can figure out what is making the levels low, then we can fix it and concentrate on the hips. Every time we get back a test result something else is crossed off the list. We're getting closer to an answer and I can not wait for that day to come. On to the next round ...

Today was Ava's pre-op tests for her surgery on June 12. It was a crazy morning trying to find our way around the hospital and figuring out where we need to be. After filling out lots of paperwork and many signatures later we were giving instructions and lots of lab paperwork and sent on what felt like a treasure hunt. First there was a urine and a blood test...augh, another one! Needless to say Ava was not happy about this. After convincing her to gulp a cup of water I was able to get her to pee in a cup. Then it was time to draw blood. It took both David and I to help keep her calm and still. Surprisingly she did great. When we initially sat down she was very reluctant to give up her arm but we were able to convince her pretty quickly. If she cooperated she would get ponies later. Okay. I had tears in my eyes the whole time, I feel for my little girl. Today she did not scream or cry but whimpered the whole time. This crushes me, blood work is becoming normal to her. Six vials later, we were done and on our way to the last test, x ray of her chest.Ava looked so sad as we waited to be called for her x ray. She was tired and hungry. The x ray went smoothly. Ava sat like a pro with her blankey over her head and 123, it was done. While we were waiting David ran to the car for a snack and drink. He surprised her with fruit snacks which perked her right up. We were off to our last stop, to meet with the anesthesiologist. This was quick and easy. We answered a few questions and he explained what his part was in the surgery. We were good to go, now the waiting begins.

Waiting for xrays...

All finished!

More Ponies!

 Ava was a trooper today, even with going from one end of the hospital to the other and back again. She takes each step of this journey in stride. She absolutely amazes me. She earned each an everyone of her My Little Ponies today and so worth seeing the smile on her face. Ava is a smart little girl, she understands what is going on and constantly asks us questions along the way. I pray Ava keeps her wonderful attitude and strength over the next couple of months. My Princess P has taught me how to be strong and brave, I hope I can be as strong as her when I need it most.ooper today, even with going from one end of the hospital to the other and back again. She takes each step of this journey in stride. She absolutely amazes me. She earned each an everyone of her My Little Ponies today and so worth seeing the smile on her face. Ava is a smart little girl, she understands what is going on and constantly asks us questions along the way. I pray Ava keeps her wonderful attitude and strength over the next couple of months. My Princess P has taught me how to be strong and brave, I hope I can be as strong as her when I need it most.

Sweet Girl

Tonight after bath Ava asked if I could braid her hair. What!?!? Did I hear that right?? I was so excited because she never lets me touch her hair other then blow drying it or flat ironing. Finally I was getting my moment, even though she insistent I put in 5 braids. Sure, I'm  happy you're even asking! So the two of us sat on her bedroom floor and I was braiding away. We had the sweetest (and saddest) conversation...."Mommy I try to walk fast so I can walk better. Sometimes I don't walk funny anymore." My heart felt for her so much at that moment."Oh, Ava. I know you want to walk better but only the doctors can fix your hips." Her response..."Oh, but I try." My mind was going a mile a minute and it took all I had in me to control my emotions. How do I make my little girl understand what was going to happen to her? How do you explain all this to a 4 year old when you can barely digest all the information? I don't want to scare her but I also don't want  her to be surprised. I gently explained that her hips weren't in the right spot and that's why she walks funny. It was not her fault or something she could control, only the doctor could fix it. She just looked at me with such sad eyes and I could tell she was really thinking about what I just told her. In her sweet voice she just said "Oh." I asked "Do you want me to show you what I mean?" "Yes." I had her stand up in front of the mirror and hold her hand out flat. "Why am I doing this? I thought you were going to show me a picture?" Oh Ava...I held her hand and ran it from her waist down to the top of her thigh. "Did you feel how your bone sticks out a little bit?" "Yes." "That's your hip bone and it's not in the right spot. The doctor is going to put it back where it's suppose to be." (I pointed to where the hip should be.) "Okay. When my cast is on I can't go swimming but I can watch Jack, right?" "Yes, Ava. you can." "Okay" and she ran downstairs to watch tv with Jack. Kids are funny, they except what you say and quickly moved on. This conversation lasted about as long as her braids did. I put them in, we took pictures and she decided they needed to come out. When she saw her hair in the mirror all big and wild, she looked at me and said "Your going to have to iron this in the morning." She is my child!!

As I write this and relive our conversation I'm not going to lie, my eyes have welled up several times. I realized tonight Ava must think about her surgery as much as I do. I'm glad she talks about it and asks questions. Almost daily she will ask me something about when she's in her cast. Her main concern has been about friends coming to play with her and what she will be able to do. She has also asked about how she will fit in her car seat and how she will sit up to eat and play games.  I'm hoping our honesty will help her cope and prepare her  for what is ahead. The surgery is 5 weeks away and I'm not really sure any of us will really be ready. Ava is amazing and reminds me every day how strong she is. All I want to do is heal my beautiful little girl and get her as healthy as possible. I pray for the time to go quickly and smoothly. Before we know it we will be on the other side of this where my Princess P is singing and dancing as good as new. 

Something Positive

It's been 10 long days since Ava's Endoscopy. This morning Dr. T called with great news, all the tests are negative. Yeah!!! I was elated to here this news, there is nothing going on in her digestive tract. Every time something gets crossed off the list we are a step closer to finding out why our sweet girl is not growing properly. We are going to continue with Ava's appetite stimulant and have one more follow up visit before the first hip surgery, then I think that will be our last visit with Dr. T. I am so thankful she was able to rule out so many things in the short 3 months we've known her and has taken such great care of Ava.

On Monday we took Ava for more blood work to recheck her hormone levels. She was a trooper, she cried while the blood was taken but immediately stopped after the needle was removed. The highlight of this visit was after the tech asked if she would like a princess sticker, Ava responded in disgust " I don't want your stickers!" and marched out the door. Normally I would not laugh at or allow such rudeness but the way she said it and the attitude she held was hysterical. It was as if she was saying " Really? You think stickers are going to make this better?" No one can take the sass out of my girl, she amazes me with her bravery. In 2 weeks we go back to Dr. B (Endocrinologist) for the follow up, hopefully he will have good news and tell us her levels are up. I am not convinced yet that the growth problem is not connected to the hip dislocation, maybe it slowed down her growth plates. I look forward to the next visit to Dr. B, maybe he will be able to answer all our questions.

We've had several weeks now to digest that Ava will undergo 2 hip surgeries. I still have moments when tears come to my eyes when I talk or think about it. My heart breaks for her but I also know my daughter is a fighter and will come out on top. Monday we will take her to Robert Wood Johnson for pre-op testing. I think that will be the day it will all become real. We have been preparing her (as well as ourselves and Jack) for what is ahead of us in the next few months. So many people have been so supportive and kind to us and the support system we have is amazing. Right now I feel like it's a waiting game, not that I'm looking forward to the surgery but I am looking forward to being on the other side of it. Ava seems to be dealing with everything very well right now, hopefully her positive attitude will continue. Thank you to everyone for the continued prayers! XOXOXO