My Amazing Kids

Many people have said to me the hardest job you'll ever have is being a Mom. Boy, they weren't kidding! I love being a Mom and enjoy the time and fun I have with my kids but at times it can be thankless job. Kids don't realize all the little things you do to make life run smoothly for them. As a parent all you can do is hope they are receiving the positive values, morals and manners you teach them. Over and over people keep saying "Kids are resilient." Yes, I know they are but it doesn't mean the 5 to 6 months after the surgery will be easy. Yes Ava will adapt but I'm not expecting an easy road. Over the last few weeks my kids have showed strength beyond anything I could of ever imagined. My kids are amazing! Today I had a moment where I actually thought "We're doing something right!"

Don't get me wrong, I'm not saying my kids are perfect. In fact they have days where I wish I could ship one of them off. They can be fresh, mouthy and can push me to the limits but they wouldn't be kids unless they did that. Last Wednesday I was driving my kids home from my Mom's house and Jack asked the dreaded question "Is Ava going to be in a cast after her surgery?" Ugghhh....I'm not ready or prepared for this question. Whenever possible David and I always try to tell our kids the truth, why lie when it is going to happen. I have no choice but to answer this questions truthfully "Yes she will be in a cast." There was many questions to follow, to the point of Ava ending up in tears. This happened to be the night before her Endoscopy so I quickly adverted this conversation so I could just prepare her for the next day. After Ava's shout out about not wanting a cast before being put under, David and I realized we need to prepare her for the cast. We may not be able to make her okay with it but we can prepare her for what to expect. So far being completely honest has worked in our favor, hopefully it will help this time to.To my amazement, we discovered this morning that Jack may being doing our job for us. Like many other countless mornings, David and I laid in bed ease dropping on Jack and Ava's conversation as they brushed their teeth. This is what we heard....Ava "How will I brush my teeth when I'm in a cast?" Jack "Mommy and Daddy will help you." Ava " I don't want to be in a cast." Jack "Don't worry Ava, Mommy, Daddy and me will help you with everything. You have to get your hips fixed so you can get taller like your friends." Ava "I'll be as big as Kate, Maddy and Emmy?" Jack "Yes Ava, we're going to get you better." This conversation rolled into other topics but as tears rolled down my face, I realized my kids are awesome. My Jack could not be a better big brother.

Later in the day Jack, Ava and I were driving to their cousins birthday party and they both we're asking me about Ava's surgery. Although David and I had planned to talk to them about the surgery and cast as family,   I realized since they were open for conversation I needed to seize the opportunity. One of the many questions was why does Ava need a cast? I explained the best I could that after the hip surgery  for the hip to heal properly it needed to be kept perfectly still to do that. They seemed alright with this answer. Jack then asked "How long will the cast be on?" Not wanting to ruin how well this conversation was going, I said "I don't know. The doctor will keep checking for it to be healed and let us know." Okay this is going way better then I could ever have hoped. I talked about how all her friends will come visit her, all the fun games we'll play and fun crafts we'll do and how Mommy will get to be home with her all summer. She's not crying, definitely a good sign. Jack even chimed in  "And I'll be with you the whole time." Wow, this kid maybe a better parent then me! I then told Ava that once her hips are better we want to get her something extra special for her birthday, what does she want? Ava decided she wants a pink big girl bike with training wheels. Yes Ava, we'll get you the best bike ever.Tonight at bath time we filled Daddy in our conversation. Ava was so excited to to tell Daddy about her big girl bike. She even added in "When I get big, like 6 or 7, I"ll take the training wheels off!" She is one incredible kid. As we talked Jack asked "Will I be in school when ever has the surgery?" Me "Yes it's on a school day but it's up to you where you want to be." Jack "I want to be there." Me " Okay, but lets make that decision when the day comes. It might even be field day so you might want to go to school." Jack's response "I think Ava is more important then field day." Wow! Jack is such an wonderful, kind hearted little boy. I can not even express how proud of my kids I am. It's hard to believe they are only 7 and 4. My kids are truly amazing!

Endoscopy.

My brave girl!

Luckily I got a better night sleep then I anticipated, I'm sure the glass of wine David poured me before bed helped. The morning started out pretty uneventful, Ava even managed to eat her waffle by 8am. Around 10:15 the "I'm hungry" whining began, we decided to leave early and thankfully Ava fell asleep in the car. The worst part of any procedure that involves anesthesia is the waiting. We had to be at the hospital 2 hours early. Ava was amazing why we waited. She changed into the hospital gown and socks with no problem and there was a t.v. and of Daddy's iPad to distract her. She was very cooperative with the nurse and answered any question asked of her. We were very excited to discover she had even gained a pound! Yeah Ava!! Just as she started to complain of hunger again, the Anesthesiologist came in to meet us. We were almost ready to go, he explained his part of the job and made Ava and us very comfortable.



Ava was being so brave and well behaved it made it easy for me to hold it together. Even when Ava got wheeled into the procedure area she was perfect. Answered questions and was even acted silly. Finally Dr. T arrived, she explained the procedure and what to expect after, then it was time to go. Both David and I were allowed into the procedure room until Ava was asleep. Things were going perfectly there was no tears from anyone until Ava looked at the nurse and said "I don't want a cast!" My heart stopped, immediately everyone started talking at once reassuring her no cast would be involved today. Little did the people around David and I know the next time we went through this there would be. I was crushed and could not control it any longer and the flood gates opened. The Anesthesiologist placed the mask of her little face as I held her little hands. She fought some but with monkey & blanky by her side she went to sleep.

Recovery

David and I were told to wait in recovery until the procedure was done. The 22 minutes (yes, I counted) went surprisingly quick. Before we knew it Ava was being wheeled backed in and just coming out of it. It only took a few minutes for her to become alert and she began talking a mile a minute. One of her first complaints was about  the iv in her arm. She looked at her hand, then the nurse and said "Can you take this out? I need to go get my Wuggle pet." That's my Ava...she kept her part of the bargain now we needed to keep ours. She kept chatting away after that and the nurse looked up at me "She's a chatty one, huh?" Yep but much better then crying, don't you think. Dr. T came in and went over the procedure and handed us pictures of Ava's insides..EEEEEWWWWEEEEE! A little more then I needed to see of my daughter. Things looked good but her stomach had  slight gastritis (mild irritation). She's not sure what that is from. The biopsy results should be back next week, let the waiting begin.

Ava and her Wuggle pets!!

The nurse took out the iv and Ava insisted that Daddy had to be the one to take the heart monitor stickers off her chest. This was the only part she really cried, not that I blame her that hurts. She drank 1/2 an apple juice and ate a whole Italian ice. She wanted out and knew what she had to do. She got dressed, her vitals were good and we were on our way. Ava was super patient when we stopped for lunch (neither David nor I had eaten all day.) We went straight to Rite Aide after and Ava was over the moon with her prize. After picking Jack up from his friend's house it was straight home to make her Wuggles pets. Ava's life was complete. I am in awe of my daughters strength and she did amazingly well today. She is an incredible little girl who is so brave. I dread June 12th, when she wakes up with that cast on, she is going to freak. My heart breaks when I think about it, thankfully we have a little over a month to prepare her and hopefully make her okay with it. My sassy girl can teach us all a lesson on bravery.

Prep...

My kids are infomercial junkies. They can recite most tag lines and can tell you about most products. Recently Ava has had her eyes set on a Wuggle Pet, a stuff animal that comes with a plastic machine so you can stuff the animal yourself. Every time we go to Rite Aide to fill a prescription she checks them out and always states she really wants one. Of course I always say no because we don't need another stuff animal and I'm definitely not spending $19.99 for it.  So last week David took the kids to Rite Aide and Ava showed him the Wuggle Pet and told him all about it. He told her if she really wants it, she would  have save her money and he would bring her back to buy it. Ava agrees, this is not the first time one of our kids had to save to get something we won't buy.

 A few days later we begin to prepare Ava for her next test. I explain that Dr. T has to get a better look at her tummy and we would be going to the hospital to do it. I told her they will put her to sleep just like when she got her teeth fixed and when she wakes up it would  be all done. She immediately begins to cry and says "I don't want to do that!" David, Jack and I try to reassure her it will be fine and super quick. Then David adds "I'll buy you a Wuggle Pet." Amazingly her tears stop and she says "You will?" "Yes." Her response "With your money?" "Yes, Ava with my money." "Okay, I'll go." If the prize is big enough, Ava is game. I must add she had already saved enough money to buy it herself but she's a smart girl, she took that money and bought herself two more My Little Ponies.

Tonight I gave Ava another talk reminding her about her test. I told her she needed to get up earlier then usual because she can't have anything to eat after 8am. She immediately starts crying and says "But I'll be so hungry after breakfast!" Jack then chimes in "Why do you tell her these things now I have to listen to her cry!" Really Ava, I practically have to shove food down your throat every morning and now your crying because you think you'll be hungry! Not buying it, "You'll get your Wuggle Pet." Tears stop and we move on and finish getting ready for bed. I'm sure she's a little nervous about tomorrow, as am I. I hate having to put her through another test. It's not fair my baby has to go through this. I know she'll do fantastic and get through it like she has every other test and hopefully we will get an answer. I just want Ava to grow and be as healthy as she can be. The last few weeks have been trying on us all.  Having an answer would be great and hopefully help Ava gain a few pounds before her hip surgery. Here's to making my little girl healthy and making it through the day with minimal water works (for me, I know Ava will do great!)

Life goes on...

Anyone who knows me well knows I am a planner. I am extremely organized with maybe a touch of OCD, also I have the inability to sit still. Being a stay home Mom was never something I wanted, in fact I think I would go crazy. I love my kids but 24/7, not my cup of tea. Being a hairstylist has given me so much flexibility and allowed me to have the best of both worlds. I work part time which gets me out of the house but I also get time with my children. Last year I was able to be Jack's room Mom and I'm also able to be there to watch his sports. Besides working in a salon, I also do freelance work. Great thing about doing hair is you can do it anywhere and I can bring my kids if necessary. Recently I discovered I have a knack of baking cupcakes and it also has become a stress relief for me. I enjoy doing it and I've even made so extra money from it. I am so blessed that I have job I love and I get to be a hands on Mom.

Typically our weeks are jammed packed and I rarely have a moment to myself. Between making 3 squares a day, grocery shopping, laundry, cleaning, working, freelance work, drop offs, pick ups, play dates, sports practice, doctor appointments, homework, birthday parties, church...I never stop. Of course most of this I bring on myself. For some reason I think I'm super Mom. I have a hard time saying no and I guess I like to have complete control. (Alright, maybe that's a bit of an issue.) David helps out as much as he can and my kids are so lucky they have a hands on Dad. Being a hairstylist, as well, it has allowed him to have flexibility too. He is also doing online courses to obtain his business degree. Needless to say our plates are full. We love spending time as a family and doing whatever we can together. This is how I know in the end, we'll be alright.

We've had a lot thrown at us lately when it comes to Ava. There's been so much to process and so much planning to do. My heart broke for Ava when I heard about her hip surgery and the spica cast. I was not only crying for this but I was also crying because I realized life goes on. There was other things to deal with. Being a hairstylist allows me so much flexibility but it also has it downfalls. This industry is so different from many others and unfortunately doesn't allow for the perks of others. I had just found out I would need to take several months off work. Yes I love my job but I also work to contribute my part of supporting our family. I work in a commissioned based industry, if I don't work, I don't make a paycheck. If I take months off, my clients will have to go to other stylist. Whenever you take time off there is a chance you will lose a client, what will I have left at the end of this? I find this overwhelming to think about. Many of my clients have been with me for years. They've seen David and I get married, been there for the birth of my children and watched them as they grow. I am so grateful for the love and support they have shown me and I know they will work with me and be flexible but it is still a worry. I still need to help support my family...life goes on.

Work is not my only worry, getting through every day life I find overwhelming. I have another child, how do I find the balance? I need to be there for Ava but I don't want Jack to get lost in the mix. Life doesn't stop because my child is going through a difficult time. In the end I will have to find a balance in it all. I don't like asking for help and I know I will have to learn to. I will also have to learn to give up some control. Today we had a lot going on (things I don't want to share at this time.) The littlest, stupid thing just set me in a tail spin. I had an all out 2 year old fit that included crying, yelling and storming off. Unfortunately it was in front of Ava, not exactly a shining moment for me. Apparently, after storming off she turned to David and said "What's wrong with her?" (Glad to know it didn't affect her at all.) I'm not proud of the way I acted but I do know I'm not handling it all as well as I thought I was. I need to step back and take a deep breath. What I learned today is life will go on if the laundry is not done. Life will go on if my house is a mess. These little things are not all that important.  I can not do it all but I can be there for my children. All I can do is do the best I can. Ava will get healthy, she will make it through her surgery fine, she will heal and before we know it she'll be dancing again. A good friend said to me after hearing of her surgery "This is going to be harder on you then it is on her." From what I've seen of Ava so far, it couldn't be more truthful. We will all survive and life will go on.

Tough Decisions...

When your child has an health issue ,small or large, there is always decisions to be made. When your child has several issues going on you have to prioritize what needs immediate attention and what can put on the back burner.  Ava's hip dislocation has become the priority at this point. This is not something that can wait. The healing process is long and can only be estimated. We have 7 weeks and 4 days until her first hip surgery (not that I am counting) and I am trying to use the time wisely. As a parent you never want to put your child through any unnecessary tests and at times tons of information can be thrown at you. I am feeling as if  we are in a time crunch in solving her growth issue. Once she is in a Spica cast we do not want to do any additional testing until it is off. That will be tough enough for Ava, there is no need to make that time more stressful. The search will be put on hold for who knows how long. I just want my baby to grow and be as healthy as possible while she is healing. I have been taking Ava to most of her doctor's appointments. Luckily I have a fantastic memory and I can come home and relay all the information from the visit to David. From there,  together we decide what our next step will be.

My friend Meg, who is a nurse, for years has been mine and David's go to person for medical advice and information. Meg and I have been friends since third grade, got married 9 months apart and gave birth to our first born 5 weeks apart. With permission from my OB, Meg got to observe my c-section when Ava was born. We have been there for each other through the happiest and saddest moments of life. She has been a tremendous help to us through all this chaos. Meg has helped us make many informed decisions by not only giving the medical reasoning but giving it with compassion about what to do or not to do being a mother herself. She answers questions I may have or poses questions to ask the doctor. After our office visit with the GI doctor, I had many questions about the Endoscopy test that Dr. T had talked about in the future. I wanted to know exactly what it was, what it looked at, benefits of having it, length of time it took and my biggest concern, anesthesia. There was a decision to be made and I wanted it to an informed one. Although Dr. T had explained things to me I needed more. I wanted the pros and cons of the test as well as the Mom to Mom opinion. Meg knows every aspect of Ava's medical history and I knew, like in the past I would get the best advice possible. The ultimate decision would be mine and Davids' but at least we had someone to help make things more clear.

An Endoscopy is a test used to examine the esophagus, stomach and upper intestine. After sedation a small tube with a camera and light on the end is inserted down the throat to examine the inside the digestive tract. The thing that scares me the most about this test is the sedation. Meg was able to give me the pro sides to my fears and help me form the questions I needed to ask. The biggest point made that day was proper nutritional growth is important to healing, why not find an answer or cross something off the list why we had the chance. Ava's next GI check up is 3 weeks before the surgery. If she did not gain anything there would not be enough time to do the test After discussing it with David, we decided we wanted the test done and as soon as possible. I called Dr. T the next day and she agreed that the test would eventually need to be done. If we were okay with it, so was she. Next Thursday we will take Ava to Beth Israel Medical Center in Newark to have an Endoscopy. My hope is that an answer can be found so we can get her as healthy as possible before June 12th.

Understanding...

Tomorrow it will be four weeks since we received Ava's diagnosis from her Orthopedic doctor. I think every moment since then all I think of is what Ava will have to endure and what can it be that is keeping her from growing. My heart aches for my daughter but I also know she is a strong little girl and will survive anything brought her way. Over and over she has proved to us what a fighter she is. I am slowly getting over the shock of what Ava will go through and taking the steps needed to prepare for the upcoming months. A lot of information was thrown mine and David's way at that appointment. Now that I have had time to digest what will happen I realized I didn't even have the name of her exact diagnosis or the surgery that will be performed. While we wait for the day of the surgery to arrive we have appointments with her other specialists to try to determine what is causing the growth delay. I feel like we are working against time to find answers and having to deal with two separate  issues is very overwhelming.

Today was the first time I felt ready to call the doctor's office and hear the information we need to know. Ava's diagnosis is Bi Lateral Congenital Hip Dislocation. She will undergo an Open Reduction Surgery, a Capsulorrhaphy, an Abduction Lengthening, a Pelvic Osteotomy and the finally a Spica Cast. Wow! No wonder we did not retain much from our office visit. The first thing I did was google every word that was given to me so I could understand what would happen to my baby. Plain and simple they need to fit the ball back in the socket, put pins to hold it in place and lengthen the tendons, hamstring and heel cords to allow proper growth. Next a spica cast will be put on to hold everything in place while she heels. And all this has to be done twice. Again this was a lot of information to take in but I do feel better knowing. The more information I obtain helps my family and I understand what we will be up against.

Ava's health and diagnosis has consumed my life. It is the last thing I think about before bed and the first thing I think of when I wake up. Tears still fill my eyes through out the day just thinking about what she'll go through.  I try to keep busy and keep life as normal as possible for both Jack and Ava, but no matter what I am doing the wheels are turning about the next doctor's  appointment, what test has to be done, trying to prioritize and plan for what is to come. All I want for my children is to have a healthy and happy life. I pray we will get an answer soon about to the growth problem and we all make it through the next few months stronger then we began.

Jack...

When a family goes through a tough time the whole family is affected. We have always been very honest with our kids. Good or bad we tell them what is happening based on their age in a simple explanation. If they ask questions we give them more, if not we leave it at that. I thought it would be good to share with everyone a little about Jack and how he copes with everything.

Jack was born October 9, 2004. Weighing in at 9lbs 6ozs, I had delivered a 1 month old. He was always an easy baby. The type that makes you think 'yes I could do this again.' He always went with the flow and was easily entertained. Jack was a happy baby and showed compassion for others at a young age. He gets along with everyone, always adaptable. He doesn't like to see other kids upset. As early as 1, if he saw a kid crying he would go up and hug him. If another child was crying because the wanted the toy he had, he would just hand it over to get them to stop. When he was young sometimes this would bother me because I did not want my child to be a push over but as he's gotten older I have seen him stand up for himself. I no longer worry. Jack is our balance. If you believe or read astrology, I am a Virgo and David is a cancer, complete opposites but compatible. Jack is a Libra, the balance sign. We had the perfect kid to even us out.

Jack has always been my "sponge" and an eager learner. He's very curious on how things work and is very observant. Those wheels are always turning. Personality wise he's 50 percent David and 50  percent me. Not always having our best qualities but well balanced and a really great kid. I became pregnant with Ava a few months after Jack turned 2. He was very excited to become a big brother. I'll never forget the look of amazement the first time he heard the baby's (we didn't find out the sex in either pregnancy) heartbeat or the look of amazement seeing her on the tv at the ultra sound. He had turned 3 two weeks before Ava was born, and now very verbal. He immediately took on the role of big brother and became very protective of Ava. Not long after we came home from the hospital I was about to walk into the living room. As I peeked around the corner I saw Jack give Ava a kiss on the forehead and say "Ava, I just love you so much." Right then I knew, as long as Jack is nearby I'll never have to worry about Ava. Don't get me wrong they yell, scream and hit each other on occasion like all siblings but still they are amazingly close.

Jack is really creative. He loves art and building things. He also loves to dress up, sing and dance. He also is very secure with himself. When Jack was 5 he wore a cape for about 8 months. It was a part of him, he never left home with out it. He even wore it into the operating room when he had his tonsils out. To many he was known as the boy with the cape. Sadly that came to an end when he started Kindergarten, I miss the cape days. He doesn't dress up as much as he use to but still loves a great hat now and then. When Jack turned 7 he failed the eye exam at his well visit. The doctor suggested we see an eye doctor. I have to say I was a little upset by this. I have had glasses since I was 5. It is different now from then but I still did not want this for my child. Two weeks later Jack got glasses. ( I admit, I cried a little.) They are mainly for distance but he usually wears them all the time, he says it's easier.

Through out this whole process Jack has always been informed on what is going on. A lot of things that happened in the beginning were so spread out that it didn't really have an impact on him. Now that he is 7, he is much more aware. He asks a lot of questions and listens a lot closer when we're trying to talk quietly. Jack is a worrier like me. He knows whatever is going on with Ava is serious. On several occasions now he has said to me "I can't believe Ava had all these things wrong and we didn't know!" He's becoming  very concerned about his sister. I know a lot of his uneasiness has come from me. I have really kept my emotions in check up until a few weeks ago. It has not been as easy lately.

Not long after things started happening  more quickly, Jack told his teacher he couldn't see the smart board at school. Mr. C sent him to the nurse and he failed the eye exam with his glasses on. How was this possible he just got glasses in October?! He also was complaining of headaches and some dizziness. He was at the nurse's office several times in two weeks. (He also had a cold at the time.) This was unlike Jack. We took him back to the eye dr and yes his eyes were slightly worse but not as bad as he was claiming. the dr seemed to think some of it was for attention. Oh no was his sister getting all the attention lately? We got him new glasses (we never liked the way the first pair fit) and realized we need to watch what we say around Jack. He was more worried about Ava then we thought. I addressed the issue with the nurse so everyone was aware of what is going on and we can keep an eye him. We started to think that maybe the headaches were from him worrying.

After we  saw the GI doctor we talked as a family why it is so important for Ava to eat more. We talked about her new eating schedule and no drinking between meals. There are times Jack is yelling at Ava like we would during a meal. I gently remind him that is mine and Dad's job but thank you for caring about your sister so much. After we found out about Ava's surgery we decided to hold off on telling both kids about it. They  both know that surgery is a possibility but didn't want to stress Jack out. I think Ava is aware of it, she was there that day but is choosing to ignore it. Several times Jack has asked "is Ava going to have surgery?" My answer usually is "We don't know yet. The doctors will let us know." I don't want to lie to him but I wasn't ready to tell him yet. The past couple Sunday's when Jack has come out of children's church he has whispered to David "We prayed for Ava today. We prayed for her to be healthy."

Originally David and I had  decided we wouldn't tell the kids about the surgery until we absolutely had to. A few days ago we found out one month before the surgery we have to do Ava's preop testing at Robert Wood Johnson. As always we will have to prepare her for all her tests and let her know what will be happening. This past Sunday David was away for the night. After our normal bedtime routine I was laying on Jack's bed talking about our day. Jack turned to me and said "Ava's going to have surgery, isn't she?" He's a smart kid, he's over heard a lot, I could no longer put it off. My response "Yes, she is."... "What are they going to do?"...The doctors have to fix her hips..."What happens after?"...I think we should wait until Daddy gets home and have a family conversation about this. I don't want you to worry about Ava, that is Mommy and Daddy's job. Your job is to keep being the best big brother. I'm so proud of you for praying for her to be healthy and get well quickly. You can keep doing that..."Okay." That was enough for now but soon he'll want to know everything.




Many people have offered their help to us while Ava is in her cast, including to help out with Jack. Knowing   Jack he will not want to go far from Ava's side (at least in the beginning.) I will let him decide what he wants to do this summer. He will be part of any plans that will be made, we need to be there for both our children in any way we can.We will get through this as a family.

The easy way or the hard way....

I believe in giving my kids choices. I think teaching them early to make a decision is very important. Life is full of choices and one day they will have to make their own. That being said, somethings are none negotiable like eating, taking medicine and going to the doctors. A common saying in our house is "Are we going to do this the easy way or are we going to do this the hard way?" Ave hears this saying a lot! Choice 1 is easy...you cooperate and everyone is happy. Choice 2 is hard...you are going to do what we have asked of you but you will be kicking and screaming while doing it. You are not going to win.On occasion Ava chooses choice 2, I think to test us. This choice never ends well. And there tends to be a lot of yelling (me or David) and crying (Ava) involved. For some reason Ava will test David more then me on this.

Last night I began my usual preparation of the doctor the next day.  She understands this is for a weight checkup and to check her belly. She was very agreeable. Well a lot can change from 8pm to 8am. The last week has been back to her Ava's "Jekyll & Hyde" routine. She has had a cold and we never know if the morning will be a good one or a sad one. Needless to say Ava decided this morning she was not going to the doctors. This is non negotiable. I finally get her to eat 3/4 of her breakfast. Managed to get her dressed (after a fight about what she will wear, apparently she was unhappy with all her clothes choices  this morning.) and brush her teeth.Finally we were peacefully on our way, with the help of a bribe of a yogurt drink and fruit snacks. No I am not above a good bribe to make life easier.

Once we're at the doctors all is fine. First thing is her height and weight.  As she stands on the scale I quickly realize it is not what I am hoping for. Dr. T comes in and begins her exam. Then she told us what I already knew, Ava did not gain an ounce in the last 5 weeks. I can't believe it! She still has some bad days with eating but the good days are far more. Ava now has to take her appetite stimulant twice a day. Hopefully this will work. If she does not gain any weight in the next few weeks she will have to undergo an endoscopy procedure to see if there was anything going on with her stomach and intestines. At this point I explained about Ava's up coming surgery. The doctor stressed how important it is to get a few pounds on Ava before surgery. The test will have to wait. In 7 weeks we will return for a check up with her Endocrinologist, Nutritionist and GI doctor. Hopefully we'll have better news.

I'm very frustrated. We are trying so hard to feed Ava higher calorie foods but you can't force a kid to eat. I don't want to my live my life in a constant battle about eating. Her calorie intake has increased drastically. Now Ava has to have two procedures she will need to be sedated for, MRI on her pituitary gland & a possible endoscopy. Both will have to be put on hold until after the hip surgery. I hate knowing that we have to go at least 6 months not being able to get to the bottom of her growth problem. I hate the waiting game.

Reasons To Be Thankful

It has been 3 weeks since we received the news about Ava's surgery. I've had many emotions and a lot of information to digest. Anyone who knows me, knows I wear my heart on my sleeve and I tend to be an open book. There is no hiding my emotions. I tend to say what I think (thankfully I developed a bit of a filter as I've gotten older) I cry over just about anything, happy, sad, mad or frustrated. It drives David nuts!! I need to get things out so they don't fester inside me. That is one of many reasons I started this blog. I hope somebody can learn from this experience or I can reach out to other resources to help us. I know by sharing so much I open myself up to lots of opinions and advice. And I have gotten my share in the last few months. Some useful some not so much but I am always grateful  someone cared enough to say it.

We started this journey trying to solve Ava's growth problem and ended up stumbling upon a whole other problem. We are still trying to decipher weather the two are connected or not. I look forward to our next appointment with the Endocrinologist in May. Hopefully he can answer some questions we have. I've had a lot of anger as well. Not only did our current pediatrician miss Ava's dislocation, so did our previous pediatrician (practice of 5 doctors) we went to the first year of Ava's life. How does his happen?? I'm letting the anger go because it is not going to change things.Doctors are human and make mistakes. I hate that a huge one was made on my child. We found it now and all we can do is move forward. I will change doctors but right now I can't. Ava currently has 5 specialist. All referral based and will be having surgery in the near future. I can not bare to introduce her to yet another doctor. There are not many choices that take our insurance in the area so while Ava goes through this convenience wins. 

I am thankful for my husband. David and I have been married ten years. Our lives are not perfect and the road has not always been easy. We've made our share of mistakes but I am thankful we have learned from them and have grown closer because of them. We are lucky our difficult times has brought us close and like anything else that has been thrown our way, we will tackle it head on, together. Our children are included in everything we do in life. We will get through this as a family. As David says "Lets not sugar coat this, the next 5-6 months are going to suck!" It will not be easy but we will get through it. We are not the first to go through this and we will not be the last. All we can do is make the best of it.  Over the summer our family started attending church at the prompting of our children. I believe in fate and things happening for a reason. It is true that when going through difficult times you need to have faith, something to believe in. I am still figuring out my belief in God but I do know each Sunday I feel a little better after listening to that weeks sermon. I know it touches my heart when someone comes up to me , weather they know us or not, and says they are praying for Ava and our family. I'm beginning to believe in the power of prayer. There are many things we can not control. I can believe that there is some one watching over us and guiding us along the way. I am thankful for my huge family. We may not see each other all the time. We may not talk all the time. But when times are tough we stick together. I am lucky to have so much family close by. I am thankful for all my friends, new and old. Everyone has been so supportive. It's nice to know so many people are willing to listen even when I'm a mess. We will get through this. 

We decided not to get a second opinion. We saw the x rays, it was clear as day. We did our research, no doctor could tell us any different. It takes forever to get appointments. We do not want to delay the inevitable. The sooner we start this process, the sooner it will be over. Ava will start Kindergarten in the fall of 2013, we want to get her well before then. She is aware she may have to have surgery but we haven't told her about the spica cast. Soon we will prepare her for what is coming her way. On June 2 Ava will be in her first dance recital. I'm sure I will cry the whole time, knowing this is the last time she will dance for minimal of 6 months, possibly a year. On June 12, at Robert Wood Johnson in East Brunswick, our butterfly will undergo her first surgery....

Thank you to everyone who has taken the time to read this. I truly appreciate all the encouraging comments I have received. Please keeping praying. XOXO

Orthopedist finally!

I had 3 weeks to do my research on Hip Dysplasia. Like anything else in life, no matter what it is, until you have it, a family member has it or friend has it you usually don't know much about it. I had heard of Hip Dysplasia but really didn't know anyone who had it. I immediately began googling and reading anything I could find. Most cases were found with in the first year of birth. Babies are usually born with it. When caught early it can be treated with a brace or a spica cast but usually no surgery. When found after 2, surgery is usually the only option. What!!! Surgery!! My little girl may need surgery! How did this happen??? I have to admit I refused to believe Ava was born like this. It had to have happened from a fall, maybe at 1 or 2. David on the other hand was more realistic, he kept saying I know she was born like this. She has never walked right. I had to stop with the Internet, I was driving myself nuts. I couldn't wait until our appointment. I needed answers.

After getting the x ray results we had explained to Ava that she has boo-boo hips and this is why we think her knees and legs hurt sometimes. A few times when talking about something she has commented "After I get my hips fixed...." She hangs on every word we say now. A few days before the appointment I began to prepare Ava for yet another doctor she would meet. Me..."Ava, we're going to meet a new doctor who is going to fix your boo-boo hips.Won't it be great if your knees or legs didn't hurt?" Her response "Why? So I don't walk like your Mom anymore." That's my little fighter always bringing the humor to it.

March 23,2012....Finally the day came to meet the Pediatric Orthopedist. Our visit began the usual way  and with the usual questions...we told Ava's story beginning with the dental problems. Dr. A was very nice and Ava was being cooperative through out her exam. The next step was to take 2 more x rays to get a better look at what was going on. Once again Ava got through her x rays like a pro. Back to the exam room. Dr. A reviewed the x rays and shared the results with us...Ava has bi lateral full hip dislocation that she was born with. What ? Did I hear that right??? How did she make it almost 4 1/2 years and not one doctor detected this! I'm going to be sick! Then there was more question...She has a sibling? Yes, Jack 7. Does he have any problems like this? No. Was Ava full term? Yes. Any complications or illness during pregnancy? No. Natural? No. C-section. Breech at anytime? No. Any known family members with hip problems? Not that we know of. (20 percent of children that have hip dysplasia have blood relative that has it.) Dr. A then continued on...Hip dysplasia is a genetic disease. Because she does not have any of the normal factors we will need to consider genetic testing in the future to make sure there is no other underlying problems. We should have Jack looked at, as well. That's pretty much all I retained from that part of the conversation, I was having a hard part getting past full dislocation and born with. David and I kept looking at each other in disbelief. I was dying inside, I knew what this meant. I prepared myself for the worst thinking it can only be better, right? I was so wrong...

Then Dr. A delivered the news I did not want to hear...surgery on both hips. He will perform the surgery with a second doctor. In basic terms they will shave the ball to refit it into the socket. They have been growing separately for 4 1/2 years, now they need to fit them back together. If not caught at birth the optimal age to do this surgery with best results is between 2and 3 years old. Ava's bones are at optimal age. Okay that's a positive...Having to do both hips is also a good thing (even though going through it is not so great) because having only one leg done would make one leg shorter then another. That's a whole another hosts of problem. I'm trying to be thank full for two surgeries, her legs will be even. Then Dr. A proceeded to tell us how things will go...They will perform the first surgery and Ava will be put in a Spica cast, she will heel for 6 weeks. After 6 weeks they will remove the cast and perform the second surgery. She will be put in a Spica cast for 2 to 3 months....The cast will be from chest to ankles. Ava will be completely immobile. OMG!!!

At this point I am doing all I can to hold it together. I'm trying so hard to stay strong  for Ava but I could not control the tears rolling down my face. Ava feeling the change in the room began to pack up her belongings she brought and said "I want to go home now." You and me both kid...As the doctor keeps talking all I hear is "WaaWaaaWawWwawAAAWaaaaWaWa.." I barely remember a thing after that.He offered to give us a copy of the x rays if would like to get a second opinion . He's giving us the weekend to digest everything and to do our research. (I've done the research.) The nurse will contact us next week to set things up. okay. David and I drove separately that day because he had to go right to work. I was barely holding it together and as I pulled away the tears came harder and faster. I was a mess. I could not talk to anyone.My heart was broken for my Princess P. It took 3 days before I can talk about it with out going hysterical. Even now I tear up when I talk or even think about it. Our family, our Ava is going to endure a very difficult 5 months. I wish I could change this for her.

In the mean time....

Ava is an intelligent little girl with an incredible memory. She remembers every doctor she sees by name or first initial. Also she can remember why she goes to them and why she has to take each medication. This comes in handy when she's having a not so cooperative day. March 12 we had a follow up visit with Dr. T and to meet Ava's nutritionist. Ava only put on a few ounces in 4 weeks but it was a start. Has she been taken the acid reflux medicine? No, she refuses. I pick my battles. (We don't think she has acid reflux, so I don't push this one.) How about the Lactulose (stool softener)? Yes but every 2-3 days.* Good. Her intestines feel empty, which means the Lactulose is working. Lately there wasn't as many complaints of being to full to eat or her belly  hurting. Finally one thing going right.

*Ava despises the taste of the Lactulose. The first couple days on it she gave a fight about taken it and also it gave her the runs. We went to every other day and cut the dose but it still wasn't easy to get it in her. After about a week of this Ava came to me one day and said "Mommy my poop comes out so much quicker and easier now!!" This is how we came to the compromise of every 2-3 days. She still doesn't like the taste but there are days that she'll ask to take her "poop medicine." She always says "Dr. T says I have to take my poop medicine to empty my belly so I can eat more healthy food so I can grow."

3 ounces was a good start but Dr. T wanted to see a higher gain in our next visit. She decided to prescribe an appetites stimulant. She prescribed Cyprohedtadine, an antihistamine that happen to have the side effect of stimulating the appetite Okay we'll try it. It was to giving a bedtime because it had may cause drowsiness. If she  is still drowsy in the morning then give it 1 hour before bed. (I'll come back to that story.) See you in 4-5 weeks. Next we met with Mitch, the nutritionist. We go over what Ava eats regularly and her portion sizes. Ava's eating habit is something David and I never agree on. I always say she eats but in small portions and not consistently. He says she never eats. at this point we pretty much have let Ava eat what she wants whenever she wants just to get calories in her. Mitch is glad to hear Ava is eating a variety of healthy food. her portions are correct. She's eating the portion a 2 year old would eat. She's eating for her size not her age. Hmmmm, makes sense.

Her suggestion includes a regular eating schedule. 3 meals and 3 snacks a day. If she wants to skip a meal then fine but don't let her eat again til the next meal time. (If she skips lunch then her next meal is a snack. She can only have a snack at that time. Don't try to make up for a missed lunch because then she won't eat her next meal either.) All makes sense. Also try to add in extra calories whenever we can. Extra butter, whole milk, instant breakfast shakes at bedtime. No drinks in between so she won't fill up on liquid. A portion of protein is the size of her palm, a portion of carbs is the size of her fist. try to give a well rounded meal. Got it! Weight Watchers with fattening food. We're good to go.

We gave Ava Cypro. at bedtime the first night. Boy did it knock her out. She looked comatose the next morning. David dropped her off at school and he felt bad because she looked like a zombie. the next night we started giving it to her at 7 pm. In a few days we noticed she was eating better. By day 5 she was waiting for Jack to fall asleep and coming downstairs to eat at 9pm at night. It was like she was famished! By the end of the first week she was eating like crazy. What did you do with our kid?? It was crazy the amount of food she was eating. This went on for another week or so then it slowed down a little. She is still eating better but not with the same gusto she did that first 2 weeks. Tomorrow (4/16) she goes back to Dr. T for her weigh in. I'll keep you posted....

Results....

While waiting we read up on Celiac's Disease. I can now tell you anything you want to know about it. David and I had decided that if this is what Ava has, our whole family will go gluten free. If she has to have something, why not this. It's a diet change, no medication. About a week after the traumatizing (for me, not Ava) blood work, Dr. T (GI) finally called with the results. All Ava's labs were negative...blood, urine and stool. I was stunned! Really she's a classic case. This had to be the answer. I was now extremely frustrated, I thought this was it. We could tackle the problem, not that it would be easy but we had an answer. After getting over the shock of it, I then also did have a moment of relief. We just crossed something off the list of what she didn't have. That's a good thing, right? There was still the chance she was fine, just small.

A few days later Dr. B (Endo) called with the x ray results. As he expected Ava's bones are under age. Her wrist is measuring at 2.6 years and her actual age is 4.4 years. Well finally someone confirmed what we knew all along, she is the size of a two year old. The rest of the labs were not in yet. Depending on what they say Ava is more then likely going to have to under go hormone therapy at some point. This was upsetting but fixable, Okay we can deal with this. We are finally getting answers. But what he said next threw me for a loop. "I also found something unexpected, she has a displaced hip." What?? Did I hear him right? I just asked the doctor not to long ago if she walked funny. He said she was fine. How can this be happening?? He went on to explain that he can not give me more information based on his x rays but we needed to contact an Pediatric Orthopedist immediately. This can not wait. This can not be happening! But it is....

I was at work when I received this news. First thing I did was call David to tell him about the results. Needless to say he was as stunned as me. As soon as I was finished with my client (thankfully she was my last for the day) I headed straight home to find a pediatric orthopedist in our insurance plan. I found two, one in Newark and one in New Brunswick. I called both and give them the information I have. Apparently the way this specialist works is the evaluate the information then call you back with an appointment. The one in Newark said she needed to consult with the doctor but would call me back within 24 hours. The one in New Brunswick asked me to have the pediatrician fax the findings over, then they would make the appointment. In the mean time the pediatrician called saying he received the x ray results and had talked to Dr. B and he recommended the orthopedist in New Brunswick. My response was "I called both, whoever calls back first is who we're going with." Sorry but I don't exactly have faith in his judgement. New Brunswick called first (in fact Newark never returned my call) and our appointment was set for March 23...3 weeks away.

Few days after that Dr. B called again with the rest of Ava's lab results. Ava's hormone level was low, this is why she is not growing at the proper rate. He went on to explain the hormone level is a very weight dependent number and if we could get a few lbs on her this number could rise. Fortunately Ava's levels are on the high of the low side. Normal range is 75-201 (not sure why there is such a range) and Ava's level is 52. The next step is to find out why this level is low. To do this she will need an MRI on her pituitary gland, for this she will have to be sedated. We will do a follow up visit at the end of May and any further testing will be put on hold until after we take care of the hip dysplasia. Also keep our follow up with Dr. T and the nutritionist and work to get Ava's weight up.

Before getting off the phone I remembered to ask "can you tell me which hip was displace?" (I was so stunned last time I forgot to ask.) His response was " I'm sorry I was not more clear, it's both." Are you kidding me??? No wonder my daughter is Jekyll and Hyde and complains of leg pain so often!! How did my doctor miss this!! Anger can't even describe what I was feeling!!

Testing....

I left the doctors office that day armed with papers for lab work and a script for x rays. We are getting somewhere and soon we will have an answer. Once we were home one of the first things I did (after filling David in) was google Celiac's Disease. The more I read the more I was convinced this is what Ava had. Symptoms...failure to thrive, joint pain, throwing fits for unknown reason, teeth decay, complaints of fullness...She was a classic case. This was describing my child. There was know doubt in our minds what the results would be. A diet change. Not easy but doable. No medication involved. It was going to be tough but we could help our baby. I was obsessed, the Internet is not always a good thing. I was driving myself and my family crazy...

We had to wait a few days to take Ava for the blood work. We needed a day where both David and I could go...this was a two man job. Ava had blood work before, she knew what to expect. This one was going to be tough. We explained that we need these tests to help her grow but she wanted no part. Ava's response "I'm not going!" Sorry sweets, you don't have a choice. After the nurse reviewed the paperwork we were told there was way to much blood needed. We could do half now and come back for the other half in three days. Okay do the Celiac test first, that's what we're sure she has. It took both of us to hold Ava still. She screamed, cried (as did I) and kicked for her life but 4 vial's later they had what they needed. In true Ava style, the tears stopped instantly when it was done. She was annoyed at the nurse so she turned down the stickers but then stopped in her tracks and said "I'll take them for my brother." She loves her big brother. We then went to Target bought her an icee and a pony of choice. All was better with Ava. We have to do this again?!?! augh!

The next round of blood work pretty much went the same way except this time Jack was with us. Jack can not take the sight of blood so now we had to keep him from freaking out too. Ava put up her usual fight although this time she managed to kick David in the privates and bring him to his knees. Ava's a fighter. Off to Target we went... Now all we needed was a urine and stool sample to complete the lab test. Trying to get a 4 year to pee and poop in a small plastic cup is a feet in itself but several days later we we're done. X rays were next....

We explained to Ava she had to get x rays. It won't hurt, they are going to get pictures of your bones. Her response " Like they did of my teeth?" Yes. "Okay" So off we went for x rays. She was not scared at all. The issues came when we had to take her ear rings out. Ava hates changing her ear rings. She threw such fit, I'm sure the tech was thinking "great, this should be fun she's a brat." 10 minutes later and lots of coaxing she was ready to go. The tech expressed how a lot of  x rays were needed. ( Yes. We know. Just do it.) With blankey draped over her face, Ava was a pro. The x rays were over in no time. "She sits better then most adults." we were told. So proud of Ava that day (besides the ear ring moment.) We headed straight to Toys R Us. She picked out a new shopping cart and the waiting began.....

February 10,2012....

Days before the doctors visit we began preparing Ava. We explained to her that we are going to a new doctor. She is going to help us find a way to make you grow big and strong. Learning from previous doctors visits she immediately asked "Can we go to Target after?" Yes, we can got to Target after. She was game. The day finally arrived. Unfortunately David had class and could not come with us. We waited patiently for our turn and finally we were called in. Ava's new GI doctor was a female doctor, who Ava immediately took a liking to. Why not? She looked 12! (I'm getting old.) Dr. T was very friendly and put us both at ease. I began telling her Ava's story starting with all her teeth issues. Following with the complaint of leg pain. and on and on... She asked a lot of questions that some of the answers were of a concern. After reviewing Ava's growth charts, she stated  that Ava dropped off the chart shortly after 1 year. I wondered, why had we not been sent to her sooner??

After her exam and evaluation Dr. T believed Ava has Celiac's Disease. A Glutton intolerance. She had many classic symptoms and a child with this disease would have a difficult time growing. Finally we're getting somewhere! She was sending us for blood work, urine analysis, and stool sample analysis. Also Ava was giving  a prescription to treat possible acid reflux and a stool softener to help her empty her intestines better. (Ava has always had hard bowel movements.) She believes this maybe the reason she always said she says she's full or not hungry. After all said and done we were to return again in a month, along with an appointment with the nutritionist. She also wanted us to see the Endocrinologist that day. Although she was pretty certain it was Celiac's, why not meet with him in case she was wrong. If it was not Celiac's , we're ahead of the game. Of course we'll wait, thankfully she got us in. I now love Dr. T. Not only does she say she could be wrong but also helping us find the answers to why our little butterfly is not growing. Killing two birds with one stone, she's my kind of doctor. Finally someone agrees with us, there is something wrong with Ava.

Back out to the waiting room we go. We waited another 1/2 hour. Ava was getting restless and of course today of all days I had left all the snacks in the car. Finally we we are called in. The nurse sets us up in the room and tells us Dr. B will be right in. He was going over Dr. T's notes to see what she thought was going on. To keep Ava occupied I handed over my I touch. When Dr B walked in his first response was "I just ruled out 50 percent of everything that she could have because developmentally she's right or she wouldn't be using that." So our story began. He asked many of the same questions and he agreed with Dr. T's diagnosis. But just in case he would like to run his own tests. Blood work as well as x rays. He wanted her bone age measured as well as a full body x ray.

Ava was officially giving the diagnoses of failure to thrive and short in stature. Finally!! Not one but two doctors agreed there was something going on with Ava. We are going to get answers. There is some relief.

Finally!

In January Ava came down with a cold and had a cough we just could not get rid of. So off we go again to the doctors. Like every visit she gets weighed, the scale has not moved since her last visit in early November. In a little over 2 months she has not gained an ounce. Finally I had enough. Over the last few months David and I had become more frustrated, how long can we go on like this? We go to a specialist and they find nothing we have piece of mind. We can finally move on or we deal with what they tell us. I knew I needed  to start complaining louder or I have no one to blame but myself for this viscous cycle. We are Ava's parents. No one knows a child better the their Mom. No one knows their child better then their Dad. You know when something is not right before any doctor. Both of us have been expressing concern for way to long. We are Ava's advocate. No one can make this better for her but us.

So once again I express how concerned I am about Ava's size. She is 4 years old and 24 lbs. Her cousin, Jayke (who also his patient & he knows they are related) will be 2 in March is now bigger then her. Yes I am concerned. She has 1 1/2 years until kindergarten. How will we let this child goes on a bus? How will she carry a full size backpack? It's the same size as her. I need to know now if there is something wrong. Send me to the specialist of your choice but send me some where. Finally he agreed. Hallelujah!! Maybe, just maybe we'll get answer's.

He gave us a referral to a Gastroenterologist. This doctor happened to be in the same specialist practice as the Arthritic doctor we saw the previous June. I immediately went home to make an appointment. I was thrilled to find out that they had an available appointment in 2 weeks. We didn't have to wait 3 months this time. February 10th could not come fast enough...

Nothings wrong.....

We had an uneventful summer. We did the normal summer things...beach, pool and enjoyed no real schedule besides normal work hours. Ava still was not a great eater and still continued with good days and bad days. Some days happy, others you could barely talk to her. When she was having a sad day she complains that her knees hurt, she's not hungry and every little thing can make her cry. At times she prefers comfort from Jack rather then me or David. Other days when I'm leaving for work she'll sob saying "I'll miss  you too much. Don't go." Ava has always been an independent child, these words always break my heart. School starts in the fall and we get back in our routine. Although Ava has never been a great sleeper but oddly enough does enjoy sleeping in on occasion. I always dread the days she does not get up before Jack gets on the bus. First thing she asks is. "Where's Jack?" He left for school. Between hysterical sobs, she'll reply "but I didn't hug him I miss him so much." Again makes me so sad.

 In October she turned 4 but is the size of a 2 year old. At her yearly check up she only weighs about 24 lbs. She is not on the chart or no where near the chart for that matter. The doctor, as always, expresses concern...Yes we've tried ensure. Yes we try higher calorie foods. Sometimes she eats great but sometimes she hardly eats.  She still complains her knees hurt...Yet he doesn't recommend further testing. Like every other visit I say how we're concerned about her size. Many of her friends her age are a foot taller. Many that are younger are passing her by. As he had said in the past "We'll keep a watch."

Since Ava started walking she has had a "waddle" to her walk. In the beginning we thought it was because she was so small. Her back was slightly arched and her belly slightly stuck out. She was just keeping her balance. As she got older it became a running joke that she walks like Nana, my Mom. After a while we began to think should we be concerned? My Mom is very healthy but is in her 70's, has bad feet and had a knee replacement a few years ago. This can't be good that they walk a like. David became very concerned so once again we head back to the doctors. We explain to the doctor that we are concerned with the way she walks, as well as her telling us she has leg pain over and over. He watched her walk. His response was "She's fine. Don't worry so much. She'll out grow it by 6 or 7 years old."

Here we are again. Are we over reacting? Is everything fine? He's the doctor not us. But in the back of my mind I always think there has to be something to the teeth decay. There has to be something to her leg pain. These things are not normal for a otherwise healthy 4 year old. Our little girl can barely make it 10 minutes walking before she says "My legs hurt." " I can't walk." "Pick me up." "I want my stroller." This is not normal but yet again we're being told it is.

After the teeth...

After Ava's dental surgery things seemed better. She ate better and more often and was not throwing as many fits.  I had asked her doctor and dentist many time what would cause her teeth to decay at such a young age. Do you think she is lacking something? Is there a deficiency? We never got a straight answer. The most common was, maybe she was born with weak enamel and food got caught in them causing them to decay. I'm not a doctor or a dentist, maybe their right. It didn't feel right to us that this was the answer but how do we know.

At her 3 year check up she had grown 3inches and gained 3 lbs. Amazing!! Was it the teeth all along? Is she going to catch up now? Hey maybe they were right. Things were better for a while. In January-February of 2011 we knew there was more to this then her teeth. Ava threw several hour long fits that was above and beyond what had ever happened before. She was screaming crying, throwing things. It was unbelievable. Neither David or I could calm her down or get her to stop. We yelled at her, put her in her room, threatened to take things away and at one point I even cried with her out of frustration. She could not tell us what was wrong. She would just yell " I don't know!" It was a cold snowy winter and her complaints of her knees hurting were more frequent. Her fits were worse and she would decide on a whim weather she would listen or not. Some days she refused to eat, others it was refusing to get dresses. Yes she is stubborn but this was ridiculous!

After talking about it, David & I began wondering maybe were yelling and punishing her for no reason. Maybe something is wrong? There has to be more. At her most resent visit doctor check up she had not gained an ounce. They said maybe her knee pain was "growing pains." Wouldn't she have to be growing for this to be so? Finally we decided to go beyond our pediatrician and start with what we know. Auto immune disease/ arthritis run in my family. I called the doctor and got a referral to see a Rheumatologist. As everyone knows getting into a specialist can take forever. The first appointment they had available was June...we were in February. We had no choice but to wait.

As the weather got warmer Ava's fits became less and she was eating sometimes. She gained an ounce here and there but nothing significant. June came and we told our story starting from the dental problems, along with family history. This was a concern and yes she did have symptoms of arthritis but nothing visible. It didn't warrant any more tests and she told us to keep a watch on her and come back if there were anymore symptoms. No at the moment Ava did seem better but it was also warm out and who isn't happier when it's warm & sunny? Once again we thought maybe we were over reacting, Ava is fine.

Princess P

I thought I'd give a little background on Ava's personality. Ava came into the world screaming and has always found a way to be heard. When Jack was born he was an easy going, laid back baby. He always went with the flow and had no problem adapting to whatever came his way. He was that kid that people were volunteering to babysit.  David and I have always talked to our kids like "mini" adults, telling the the truth based on what they are capable of understanding at their age. There is no "sugar coating" in our house. So when I became pregnant with Ava, Jack was always apart of everything from the very beginning. He is a awesome big brother and hope the closeness they share now will continue forever.

Ava wasn't a difficult baby but wasn't as easy as Jack. Welcome to the world of girls! She was never a great sleeper but would get through a big chunk of the night. There was a handful of times that she actually slept all night in her crib. Before you become a parent there is always a list of things I'll NEVER do. Then you have a child and that list becomes I'll do whatever I have to do to get through it. Sleeping in our bed was one of those I'd never do things. Ava is the reason we now have a king size bed. She always started out the night in her crib but sometime during the night she landed in ours. By 10 months it was almost comical... go to put her in the crib, she screamed bloody murder. Walk away from the crib she was fine. She did not like her crib and she let us know it. One night out of frustration we put her mattress on the floor. Lo and behold she slept through the night. From that day forward she slept on a mattress on her floor. She still climbs into bed with us more times then we like but at least now she can climb in herself.

Ava is a sassy little one. For the most part happy but her emotions sometimes are like a light switch. She can be laughing and dancing and the next minute yelling at you not to look at her. Somewhere around the age 2 she started complaining her legs and knees hurt. There would be days that she would wake up perfectly happy but within moments crying "My knees hurt! I'm not getting dressed" I won't brush my teeth! I'm not hungry!" Out bursts like this could happen at any time with out any inkling it was coming. At this point she is already on regular weight checks every 3 months because she is not on the charts for height and weight. I brought up on several visits that she has complaints about her knees and legs but there were no visible signs of something wrong, therefore it always was said we'll keep an eye on it. Was I over reacting? Was our child playing us? Is she just a bratty kid? These are things that go through your mind when a doctor is telling you nothing is wrong. After all we know how stubborn she is. When she decides something, there is no changing her mind. We had met our match and there are many people in our family to attest to this.


















Looking back I think maybe I should have pushed harder but as parents we always did the best we could. They gave us an answer to our question but in my gut I knew it was more. You are your child's advocate. Even if it turns out to be nothing, you and your child have the right to be 100 percent sure.

Teeth...Love the Toothless Smile

In the winter of 2010 Ava fell face first off our foyer steps onto tile. She smacked her face and her front teeth on the tile. At first nothing appeared to be wrong but over the next few weeks her two front teeth began to turn colors. We took her to the dentist and as we suspected she damaged them. Thankfully they were just baby teeth and for now we can just keep a watch on them.... Somewhere around 2 1/2 David was playing around with Ava. He picked her up and when Ava tilted her head back laughing he noticed that many of her molars had dark patches on them. What?!? When did this happen?!? We brush her teeth regularly. We do all the same things for Ava as we do for Jack. We consulted with the doctor (at this point we're there every 3 months for weight checks, Ava is 2 1/2 about 18 lbs). He recommended to go see a pediatric dentist.

On our first dental visit they give an exam to survey the damage. Needless to say Ava is not happy about this but cooperates for the most part. First question is about the darkening front teeth, we explain the falling down story. As she is checking each tooth she makes a huge scratch in one of the front teeth, come too find out that one is decaying. Now there's a big dent in it, Great! As they do the exam continues more questions are asked. "she has all indications of bottle rot teeth.?" She was off the bottle at 11 months. " Oh." She does use a pacifier but that wouldn't do this kind of damage. Bottom line is they have no idea why our baby girl's teeth  are decaying. She will need many cavities filled and 2 baby root canals. This is a filling in which they will cap the tooth after. I could not believe this was happening. All this dental work will be done in phases. This particular dentist does not believe in sedation. For some unknown reason we decide to give it a try. At this point it is June, she 18lbs and the thought of her being put out scares me so why not try it. Our next visit she will have tooth filled. They tell me how they will "papoose" her, numb the area and do the filling. Ok, we'll try it. Ava screamed the whole time & cried the whole time. It was over very quickly. As soon as Ava was released she calmed down and so began our tradition of "I feel like the worse Mommy in the world so I'll buy you whatever you want." We immediately went to target and Ava's pony collection began. 

Next visit came. We explained to Ava that we had to go back to the dentist to have another tooth fixed. "Will my mouth feel funny again?" Yes. "Can we go to Target after?" Yes. "Okay." This girl loves her ponies. So we do the same thing again. They "papoose" her (aka strap my baby to a board as I watch) and once again she screams but louder. Did I mention that she has quite a set of lungs? By the end of this visit I'm completely hysterical. Ava calmed once again when they released her. That was the moment I realized what a fighter my Princess P is.When we leave I immediately call David, I can't do this again. It's torture for us both. We need a dentist who will knock her out.

We find a dentist who will put her under. It is is August 2010, Ava is now 19lbs. We wanted to get her to 20 lbs but we need to do this. The procedure is done in Hackensack Hospital. They will put her under, x ray and assess the situation, then do the work. As any parent knows putting you child under anesthesia is a horrible moment in time. The past June I had already watched Jack be put under to remove his tonsils. I cried then and I cried when it happened to Ava. Needless to say it was a long hour and 45 minutes for us. Everything went well they even saved her front teeth. A week before her 3rd birthday Ava tripped in the dining room and cracked her front tooth vertically. Back to the dentist... they needed to pull both front teeth out. Once again she was papoosed and out came her front teeth. But not before she bit the dentist and his assistant. Ava's a fighter!!

Where It All Began

On October 26, 2007 I gave birth, via c-section, to a beautiful baby girl named Ava Kole. She weighed 8lbs 4oz and 19inches long. Jack was so excited when Daddy called him at Nana's to say he had a little sister. It was love at first sight for all. Ava wanted to be heard from the moment she arrived. One of the first things the nurse commented on to David was "Wow, she has some lungs." Over all the first year was uneventful. She quickly earned the name "Princess P" from me. Although she was a nice size at birth, she never grew all the rapidly. She was tiny and petite. The "P" was short for peanut. She crawled at 7 months and walked at 15. All was good in our little family.

By 18 months she was running and by 2 she earned the name "little butterfly" from her Daddy.She was always flitting around  the house running and dancing. From early on Ava had a strong personality. Happy one moment but watch out if something made her unhappy, this little girl could throw fits like no other. Often I would could her my Mom's voice in my head "One day I hope you have a daughter just like you!" I can be stubborn but Ava is three times more!!

At 18 months Ava's doctor became concerned with her growth. She had drastically slowed down. People often stopped us and asked how old she was. She looked to tiny to be walking. By 2 1/2 when she began talking well, we found the look on peoples faces priceless when they heard words come out of her mouth. By 3 years "I know she's small for her age" became a common saying coming out of our mouths. By 4, people often say "How old is she 2, 2 1/2?" Now Ava can answer for herself, "I'm 4!!"

Ava Kole

I decide to create a blog to keep all our family and friends up to date on Ava's journey to grow. We have been overwhelmed with all the love and support that every one has shown us. Sometimes it's difficult to reach everyone and relay all the information we have received. I'm not a writer but have always kept a journal growing up. I find writing my thoughts to be therapeutic. I thought this may help me in the months to come and have the added bonus of being able to keep everyone up to date. Thank you again for all your love and support! Please keep praying for Ava's healthy recovery and the strength for our family to make it through this. XOXO