Before bed Squeals

    Right before bedtime each night Ava gets very talkative, she really likes the sound of her voice. Listen and see is she reminds you of a really pissed off cat.....hahaha

Can we get any closer to a complete bend!!

  Ava will officially be 4 months old is a week and a day and after all that time of working with her poor little leg each and every day we are ALMOST THERE!!! She is doing so good and has been such a little trooper through the whole thing!!! Love this little girl

Such a little fatso!

This is the special brace that was made for Ava. The Black device constantly pulls the two halves together so she has to work her muscles to straighten her leg out.

Catch up

It has been much to long since my last post, so I have a few things to catch up on.
We had a really fun Halloween that we spent in Wyoming with family. Austin went trick or treating with his cousins, he was a mountain man. Ava was a strawberry and she spent all of 1 hour in her costume before she crashed for the night.

       Ava now has a special brace that was made just for her. It has a hinge at the knee that allows her to bend and kick her knee, but has constant pressure pulling it back to the bent position. She only has to wear it at night now, the doctors want her using her knee and building the muscles during the day, this also gives us the chance to play with it more and bend it more. I would post a pic of it right now, but I have currently misplaced it, so next time!

We are excited to begin this holiday season with all our friends and family. Here is hoping that our Christmas gift with be a fully bent knee, we sure work at it each day!

KICKING!!

(taken on my phone, so the quality sucks!)

Thrilled....

This week I wasn't able to go to Ava's appointment because I had my own Dr appointment for my 6 week check up. 6 weeks already, how time flies. My mom took her to her appointment this time. She said Dr. Pond kept telling her how amazed he was that Ava was doing so well and had come so far so quickly!! Go Ava!! She now has an 80 degree bend  in her leg, Hurray!!!

We also hit a HUGE milestone this week! While I was bathing Ava on Friday night and she was kicking and splashing in the water I noticed..........pause for affect........She is bending her leg on her own in the right directions!!!!!!!! I was SO excited I yelled for Clay to come in and watch her!!! I am so excited my little girl has progressed so much, and is such a trooper through it all!! I would have made a video of her kicking her leg and posted it, but again she was in the tub so not completely modest.

Baby Steps

  We have been to Shriner's twice since last I wrote. Dr. Sontora has been on vacation, so we have seen Dr. Pond the last two weeks, he is really nice also. He went through all the muscles in her foot for me and explained what they do and showing me how she moved them all correctly. I told him I was concerned about her hip because of the weight of her splint she holds her leg off to the side and rest it on the ground when she is on her back. He explained to me that this position is actually a healthy position for the hip to be in, if she were holding it in that would be concerning. He said he would do an ultrasound of her hip the next week to make sure, but ended up going over the x-rays we had at our first visit and said everything looks normal there. We have now graduated from a straight leg to a slight bend last week, and a really good bend this week, which is so exciting! Ava is doing awesome! We still take off the wrap a few times a day and work with it, and by the recommendation of Dr. Pond I now give her little leg a nightly massage, to help loosen the muscles and make sure her other joints don't get sore. She was getting a pressure sore on her ankle from the splint and the massages have also helped clear this up, hurray! All and all we are making great progress with her, little by little she is getting a good bend out of the leg. She can no longer bend her knee up, but rather holds it out straight when she has it unwrapped. This makes me very hopeful that her leg will cooperate through the whole process.

Straight Leg

         We have an appointment every Thursday with Dr. Sontora to get a new splint for Ava's leg. We were a little late for the appointment because I am still getting used to getting 2 kids ready to go. They took us straight to the casting room and the nurse unwrapped Ava's leg, then told us the Doctor would be just a moment. Well, Dr. Sontora was running a little late too apparently because we ended up waiting almost an hour before we got to see him. The nurse said he was working with a teen with a very bad back, and was taking extra time with him, so we forgave him. Our visits with him are very quick, they examine Ava's progress and then make her a new cast to stretch her out. This week we got a straight leg!! Hurray, she looks normal!!!  We are supposed to take off her splint 4 to 5 times a day and stretch out her leg. This week we have been able to get a little bit of a bend out of her when we bend it! Double Hurray!!

Shriner's

     The day we had all been waiting for finally came. Thursday morning we had our appointment with Dr. Sontora at 10:30am at Shriner's hospital, and we started getting ready to go at 8am since I now have 3 people to get ready.  I still ended up running a little late due to Austin having a freak out when I dropped him off at his cousins. It was probably due to the fact that mommy was leaving and his new little sister got to go and he didn't, poor boy. Clay had worked that morning so he was meeting us there. We ended up getting there right on time, got checked in and signed all their medical release paperwork, and by 11am we were in room #4 with our nurse. She asked us some basic questions about Ava and then had us strip her down to her diaper for the Doctor. Then Dr Sontora came in a few minutes later with 2 other doctors (nice having so much attention) and asked us a few more questions then started to look over Ava's leg.  He started pulling, stretching, and rubbing her leg. He said from the way it felt, the growth and development was all normal. He said he had to see the x-rays first, but thought we might be able to fix it without surgery.
      They sent us down to get x-rays, and while we were waiting we talked with a nice family that was waiting also. They told us they had been coming to Shriner's for five years now with their son, and they had had nothing but wonderful experiences. They said their son was born with severe Scoliosis, and by 11 months had a 89 degree curve in his spine. They were told that by that point he would have to have major surgery and have his spine fused, but they went to Shriner's and over the past 5 years they have been casting his spine and little by little they are down to a single digit curve in his spine. What a great story to hear, especially for us who are really not waiting to have our little girl go under the knife.
       The nurses came and took Ava in for her x-rays and after a few minutes of hearing her crying through the door we were back on our way to room #4. I am going to ask for a copy of her x-rays next time we go, so I can have a copy of them because they were really cool to see. Dr Sontora explained to us that all her bones in her leg, foot, and hip are formed just right. What will be her knee joint isn't lined up like it should be, but it still looks good. He said from the best he could tell the knee is the product of the positioning of leg. When she was growing with the cord around her leg her muscles were unable to pull it back down, so they started to do the opposite. Her quadriceps started to tighten and pull the leg upward, and her hamstring muscles began to loosen allowing it to pull up. This also affected the elasticity of her ligaments as well. His solution was to put her leg in a splint, and slowly over time start to bend it back the way it should go. Just like braces for your teeth, he will slowly pull the leg the correct direction and splint the leg so it stays how it should.
Then came my favorite part "Let's do this" Dr. Sontora and the 2 other doctors took us into the other room, fashioned a splint for her leg and taught us how to wrap it up. We didn't have to wait to get things going, no return appointment before we could start, he wanted to get things moving right then.....To bad we couldn't get in 2 weeks ago!

       Dr Sontora said he would like to see Ava every week to a week and a half to see how it is doing and to fashion her a new splint that will pull a little more. He explained to us that we wanted us to help her also, by unwrapping the leg 4 to 5 times a day and working with it, stretching and pulling untill she fusses at us. They gave us a few more rolls of gauze for the week and sent us to get an appointment. We were so impressed with Dr Sontora and so grateful. We were told by the scheduling lady that the clinic we were in was a 25 appointment a day clinic and we were number 29 for Dr Sontora, and after he was done with us he was flying out to Mexico to help children with problems down there. We were so impressed and really excited to start working to get Ava corrected!

Appointment with Shriner's

       Before we left the hospital our pediatrician had given us the information to get things going with Shriner's. Clay called them as soon as the Doctor left the room, I told him that specialist aren't going to be working on Saturdays, but he wanted to get the ball rolling as soon possible. Of course no one answered, so he left a message with both departments. On Monday morning Clay called again and this time was able to get our application submitted and get all Ava's info to them. Clay was told that we would get a call later that day with the scheduling department to set up a time for us.....so we wait......all day.  Tuesday morning Clay called again to see what the problem was and this time got transferred straight to the scheduling department( that's more like it). When we had talked to our pediatrician he had said that they should get us in the same week, well when we talked to Shriner's they didn't have any openings till October 17!  Two months! Neither me or Clay were okay waiting 2 months to get any kind of answers, not acceptable. So I called our pediatrician to see if we could get the info for Primary Children's, we figured we would see if they might be able to see us sooner then 2 months. I left a message for the medical assistant to give me a call back with the info. While we were waiting for that return call Shriner's called us back. They said that our pediatrician had just called them and had explained Ava's situations to them. He said the Doctor said he would feel more comfortable if Ava could be seen as soon as possible.(Yeah, LOVE my pediatrician!!) So the scheduling department had been talking with the doctors to see if anyone would squeeze us in, and we got an appointment 2 weeks out August 25, so much better.
        Later that day I took Ava in to be checked for Jaundice. My pediatrician had a full schedule for the day, so I had an appointment with one of the others that worked in his office. Nice thing about having a special baby though is the doctors remember you and take a special interest in you. My pediatrician came in with the other doc while Ava's blood test was running to tell me he had called up to Shriner's and was really glad they got us in sooner. He also wanted me to know that the Doctor that would be seeing us was the best orthopedic specialist in the whole Intermountain Region. He said he had worked with him himself and he was a great man and we would be well taken care of! I was so glad he had come to talk to me! Finally some good new and now we only had to wait another week and a half to get some answers.

Grandpa Perry's Blessing

      Clay's parents hadn't been planning on coming down to the hospital when we had Ava. Clay's dad was working day shifts and it was gunna be a week or two before they would be able to come see us. But when grandpa heard about the problems with Ava he started talking to his boss about it, and his boss gave him the rest of the day off with pay so he could come down and be with his new Grand-daughter. Clay decided that he wanted his dad to give Ava a blessing, he felt his father had a way with the words that he lacks. So we had my parents come down also and Daddy and both Grandpas gave Ava her first blessing.
      Grandpa Perry gave Ava an amazing blessing full of comfort for me and clay, and great blessings for Ava. Then my dad gave me a blessing of strength and comfort too. Me and Clay were crying through the whole thing, but from then on it wasn't such of an end of the world situations. We knew everything would work out for the best, and the amazing little daughter of God that we had brought into this world would someday walk, and will lead an amazing life with so many people who already love her so much.

Not big fans of St. Mark's

    It was 2:30 in the morning by the time I got settled into our new room. Clay had come to check on me, and was back down in the NICU. After a long day it didn't take long for me to pass out. The nurse woke me around 4 am and had me come down and try to nurse Ava. All the NICU nurses were full of compliments for our little girl. They kept telling me she was so beautiful, so calm and relaxed. They weren't used to seeing such healthy happy babies where they work, and she was a joy to have. It was nice to spend a few quiet minutes with her all by myself, and surrounded by all those other babies, I was feeling grateful for the healthy little girl she was.

       The next morning we got to see our pediatrician, he said she looked wonderful and there was no need for her to be in the NICU anymore, so they were sending her to our room. He told us that they had x-rays scheduled for later that day, and they were going to send in a orthopedic specialist to look at the x-rays and come talk to us about them. He told us he had never seen anything like her leg before, but recommended that whatever it is we take her to Shriner's cause they do amazing work, and have the best doctors around.

        The next 48 hours were full of family coming to see our new precious girl, and lots of rest for me. Austin was so excited to see his little sister. He got especially excited when she opened her eyes and looked at him, "Ava's looking at me!" he yelled and tried to give her a big hug.....We are still working on reminding him to be gentle. He kept asking me why my belly was gone, and made a point to tell me that " Ava's done cooking pancakes." Earlier in my pregnancy I had tried to explain to him that his baby sister was growing bigger inside mommy, and mistakenly told him she was cooking. Of course this confused him, so he went on to ask me if she was "Cooking Pancakes." That got a good laugh out of me so for the rest of my pregnancy he would tell people that "Ava's cooking pancakes," thinking he was so funny.

       As our 48 hour stay in the hospital progressed we continued to ask about the orthopedic specialist that we were supposed to see, and they kept telling us they were setting it up, he would come see us soon, probably later tonight, for sure the next morning. The morning of our last day our pediatrician came to see us and finally told us that the staff had been mis-informed. He said that the specialist no longer worked for St. Mark's but had moved to IMC. There wouldn't be any specialist coming to see us after all, and we would have to wait for answers till we could get an appointment with Shriner's Hospital.......Yeah, best news yet. He did tell us that he got a chance to look at the x-rays and from what he could see it looked more like her hip was just fine and it was her knee that was the problem,( which Clay says he could have told them that 2 days ago). But he isn't a specialist and we just need to wait to see what Shriner's says, he got us all the information we would need to get things started with them.
      So on Saturday afternoon we left the hospital with a new beautiful baby, a slightly less fat mother, no answers, and a very sour taste in our mouths from St. Mark's.

D Day

          We were set to be induced at 2:00pm on Thursday, August 11. Clay flew in from a business trip at 11:00 am that same day, so we had a few final hours together as a family of three. Austin stayed home with Grandma, while Clay and I headed off to the hospital. We got checked in, got to our room and got all settled in....then waited 2 hours for them to finally give me the meds to get things going. I was starting to feel the contractions a little around 6:30pm when my doctor got there and decided to break my water. Then things really started to take off. Around 8:00 I was really starting to be in pain, so they called the anesthesiologist and we got my epidural in. Clay watched the doctor put it in, and for the rest of the night would cringe when he looked at me thinking of the huge "drill bit" they just shoved in my back. 
          Ava Kawena Perry was born at 10:47 pm on Thursday, August 11 2011. When she came out she had her left arm and leg up by her neck and the umbilical cord wrapped around them both. When the doctor unwrapped them both she could immediately see that there was something wrong with her left leg. The nurse took her over to the cleaning table before I was able to see her, wanting to make sure she was ok. I could tell clay was in panic mode. He later told me that he was too scared for his little girl. He didn't even want to take pictures, he just wanted to know what was wrong and fix it. They told us there was something wrong with her hip, that is may be dislocated or have formed wrong, and they wanted to keep her in the NICU overnight to make sure she was ok. They re-assured us that everything else looked great, her lungs and heart sounded great, and she was very responsive. They finally brought her back over to me for about 30 minutes before they took her off the the NICU so I could try to nurse her. She was the most beautiful baby! No mis-shapen head, no red battle wounds on her face from birth, she was perfect! It was then that I started to share in Clay's panic. What had caused this to my poor little girl? How would it effect her in the future? Would she ever be able to walk, or to run with her big brother? What would my beautiful little girl have to suffer through in the future to get it fixed? Clay and I took a moment to cry together for her before we separated, me to get cleaned up, and Clay to watch over his new little girl as the doctors checked her out.

          It is amazing how quickly things can change..... How quickly things can go from good to bad.... How quickly we went from an amazingly exciting experience, to a living hell, stuck in a hospital with no answers. What should have been such a happy moment, in an instant turned into the hardest night I have lived through.

It begins

              This pregnancy was different from the get go. Clay and I found out we were expecting the beginning of December 2010 and we were so excited. Then on New Year's Eve while we were in Wyoming visiting Clay's parents for the holidays I started to bleed. We were pretty bummed guessing we had miscarried, since that had happened to us once before, but after a week of bleeding I was still feeling pregnant and had received another positive pregnancy test. So I made an appointment with a doctor, and after 2 blood tests and an ultrasound we found out we were in fact still pregnant, but I had a "bleed' in my uterus. The doctor said that the pregnancy could go either way, the bleed could be absorbed back into my body and we would have a healthy pregnancy, or the bleed could cause a miscarriage. So the doctor started weekly monitoring of the "bleed" with weekly ultrasounds. At about 14 weeks the doctor became concerned that I had low fluid around the baby. Great, another problem. But after going to see a specialist and having another ultrasound it was decided I didn't have low fluid, it was just in larger pockets. Then right around the 2nd trimester things started looking up. Fluid looked good, I had stopped bleeding and my "bleed" had been re-absorbed into my body. The rest of the pregnancy was worry free. The baby sounded great, blood pressure was excellent, and I was growing right on track, Finally we were out of the woods.....right