The Choices We Make

Ava has been in a Spica cast for 6 weeks and 3 days now. After I came to gripes with having to put my baby through not 1 but 2 surgeries, I made a promise to myself that no matter how difficult things got I would do what it takes to keep everything in a positive light. This is much harder then it sounds but I like to think I'm keeping my promise. Believe me I have had moments where I have completely lost it but I try to regroup quickly and move on. There have been moments when it's all I can do from bursting into tears and I keep a smile on my face. There are moments when I just want to walk out the door and not come back but I just take a deep breath and keep going. It's hard! Harder then I could ever imagined. But the reality is Ava is the one in the cast not me. Her frustration must be overwhelming. That's why no matter how indecisive she is,  no matter how much she cries, screams, yells or speaks freshly, I stay calm (well almost always) and try to make it better for her. All Ava's independence has been taking away from her; so if she cries because she wanted the pretzel goldfish instead of the regular I give in, get it and try to remember 6 weeks ago she would have gotten it herself. Ava and I are very much a like and I'm not ashamed to admit I've thrown a tantrum or two in my life. I also know children learn from what they see, if I want Ava to have a good attitude then I have to have one too.

Ava has handled herself impressively well through out this whole ordeal, there are times I actually have to take her lead and not freak out. To save all of our sanity I try to get us all out of the house at least once a day; sometimes for a walk, sometimes to a store. When you have a child in a Spica cast you might as well be pushing a circus animal around. People stare, gawk, point and worse of all, give the look of pity. Ava is oblivious to this but it irritates me. I'd rather someone ask about it then look at us like we have the plaque. Then on the other hand, there are the people who are just plain rude and inconsiderate. This bringing me to my point... the choices we make. Yesterday Ava and I went to Walmart to pick up a few things. The main isle near the registers had large displays containing school supplies, making it difficult to maneuver around and not a ton of space. Here I am pushing Ava in the stroller with a pizza balanced on top, my bag over my left shoulder and a basket on my right arm filled with things we were purchasing. Needless to say I had my hands full. (This is a normal scenario for me, I always think I can do it all.) Anyway I see a seemingly healthy woman approaching with her cart, so I start to back Ava out of the way into another isle. As she passed us she says "I can't get by because your daughter is sitting so spread eagle!". . . In a slightly rude tone.What!! I was so shocked all that came out of my mouth was "I'm sorry, she doesn't exactly have a choice!"  As I checked out a bazillion things went through my head of what I should of said or how I could of handled it. How can someone be so rude! If the roll was reversed I would of been the one who stepped to the side or even helped the person juggling so much. In fact in the past I have.  After I vented on Facebook, I realized I handled it perfectly fine. What example would have been setting for Ava if I flipped out. Don't get me wrong, I was annoyed!! But instead of dwelling on it I decided to list all the good things we're thankful for instead of holding on to the negative...

~ All our friends and family that have made meals or brought us food.
~ Our family support.
~ All the gifts people (near and far) have given or sent both Ava and Jack to keep them busy.
~ All the people who have come to visit to help pass our long days.
~ My friends who have listened to me vent and cry since the beginning.
~ All the generous donation people have made to help us raise hip awareness.
~ Most of all, all the people (who know Ava or not) praying for Ava's full recovery and healthy hips.

Now I want to share a good story to restore every one's faith in others. On Monday our doorbell rang, it was the mailman delivering a gift to Ava. As we opened the box we had no idea who it was from. Inside was a cute dance bag, two beautiful dance costumes including the accessories, a cowgirl hat and a crown. Included in the box was a letter stating she was an owner of a dance school that was sent a prayer request (from someone in our church) for Ava along with the link to our blog. After reading our blog she was touched by Ava's story and strength and wanted to reach out to Ava and let us know she had our support and prayers. The letter brought me to tears and made me realize what wonderful people are out there. I can not thank her enough! So remember that there are good, kind hearted people in the world. For every rude one you may encounter, there are ten others that are kind.. This is one of many stories I could tell that have touched me over the last several months. My Ava is so blessed! I choose to be positive no matter what comes our way, I hope you'll do the same. It makes the road so much easier.

This hat was made for her!

We're getting there. . .

It has been one week since Ava's right hip surgery. . . she is slowly but surely coming around. I'm not going to lie, it has been a rough week. Ava is not generally a complainer and handles pain amazingly well  but now she often says "My hip hurts" or "My leg hurts." I'm not surprised by this, not only did she have surgery but her left hip muscles were manipulated and changed positions as well. She has been running a low grade fever off and on all week. This is normal but doesn't help with her comfort level. Ava is back on the "Mommy only" kick . If I leave the room she is screaming for me and only wants me to do things for her. "Mama! I just want you!!" I love you Ava but  I need a break sometimes too. She is not sleeping well at night. She is uncomfortable and cries out "I can't sleep!" How do you comfort a child when there's not much you can really do for her ?! I can handle most anything thrown my way but lack of sleep is killing me. Last night she even said "You are being so mean to me!!" Okay maybe I raised my voice a little because it was 3:30 in the morning and I was exhausted but mean! I don't think so! This to shall pass . . . right ???

Slightly bigger Spica chair.

We are slowly adjusting to the shape of this cast. We have using the potty down pat, although it's not easy. Her Uncle Butch added five inches to her Spica chair so she is able to use it again. Best thing ever!! But unfortunately the angle of the cast makes it more difficult to stay upright and some times she slides off the seat a bit. I tie her in with a scarf (this took lots of convincing) to make it more secure. We're trying to get back in our groove but the moodiness (from all of us) makes it tough. When Ava doesn't feel well she can't make a decision about where she wants to sit, what activity she wants to do or what she wants to eat. Then she gets mad at me because I can't read her mind! (Hmmmm ... I wonder where she gets that personality trait from?!?!) I know once the pain subsides we'll all be much happier. Please hurry up!!

On Friday, August 3 we go for Ava's post op x ray. This is the day that can not come fast enough. This is our tell all moment. . . is the hip still in place ??? Until then I worry about everything. If the  x ray looks good we all breath a sigh of relief and just let Ava heal. I started prepping Ava for her next cast. She was not thrilled with this new piece of information but perked up once she found out her chest, belly and hips would be free. She even gave a smile once I told her she can stand in this cast. She already picked her next color. . . . Green!! (Mommy's favorite color.) My forever optimist. . . "Mommy I'm going to have green legs and maybe I'll even be able to walk like a penguin!" Oh my strong little one, I hope so! I so want this for her so she can feel like she has some control back. Each day Ava will get stronger and stronger. She is so brave and really takes each step in stride. Oh Princess P you'll have healthy hips soon!!

Still my fashionista!

Purple Cast

Waiting to go home.

On Friday morning Ava's Hemoglobin was retested to determine if she would need the blood transfusion or not. In the mean time her catheter was removed and her IV was disconnected. I was finally able to get her out of bed. Up to this point Ava had spent most of the morning crying and saying "I want to go home." "I miss my bed" (Which I found hysterical since she never sleeps in her bed.) "I miss my Daddy." "I miss Jack." I was able to put Ava in her stroller, thankfully she still fit! Ava's cast this time is very different. Her position is not as seated as it was, her upper thigh area is closer together and the bottom of her legs are about five inches farther apart. This is definitely going to be a problem! (She no longer fit's in her Spica chair.) After being in the stroller Ava refused to get out. She was drinking a little more and snacking here and there. She even napped in it because she refused to get back in the bed. She was now on regular Tylenol for pain and even went to the bathroom on the toilet which is quite a feat I must say! We were spoiled the last five weeks!! Ava was able to sit on the toilet with us slightly holding her, now I have to completely hold her and she's about 4 inches from the toilet. It's going to be a long four weeks!! Bottom line was Ava was set on leaving the hospital and she was going to cry and complain until they complied.

Around lunchtime her blood test results came back...her Hemoglobin dropped from 8.3 to 7.8 not unusual with having so much fluid through the IV and her potassium was low as well. (Also common with so much blood loss.) The Pediatric Resident prescribed a potassium supplement  to put in her drink. (Good Luck getting her to drink that!) After talking with her nurse we decided I would get her to eat as much of a banana as I could witch has the same amount of potassium. I got her to eat a little more then half, we were good to go. Now the Pediatric Residents had to confer with the Orthopedic Residents to determine if she could be released or not. Well talk already! We're ready to go! We spent most of the afternoon walking around our floor and around 3:30 we ran into the surgeon that assisted Dr. A, Dr.M. He asked Ava how she was doing. Her response "I want to go home." So I decided to plead her case...Dr. M asked all the usual questions "Is she eating and drinking?" "Some but won't eat normal until we get home." "Pain medication?" "Regular Tylenol." "Fever ?" "Finally back to normal." "Bathroom?" "Yep went on the toilet." "We're still concerned with the hemoglobin, I need to talk to her nurse." Of course I had to add my two sense...although she is slightly pale , she is not deathly grey pale like last time. She's coming around and acting like herself. Dr. M talked to Ava's nurse then called Dr. A. They all decided since we had been through this surgery before and I knew my daughter best Ava was ready to go home. Yeah!!! We were all elated! Our next challenge...will she still fit in her car seat????

Happy to be home!

After signing the necessary paper work I happily strolled Ava out of the hospital. (I just have to add our last stay in the hospital was not all that pleasant, this time was completely different. Our nurses were fantastic!!) With the help off an extra pillow Ava fit perfectly in her car seat (yahoo!), although there was less then an inch to spare between her foot and the door but thankfully she fit! We're on our way. Once we were home Ava was more like herself. She's back to being propped up on the couch and it's a whole new learning curve dealing with her purple cast. She is in more pain this time since the muscles in the left hip were manipulated as well. We have to hold her facing the back of the toilet for her to go to the bathroom...hopefully neither David or I will hurt our back doing this. Her groin area is still very swollen causing her to pee sideways on her cast and on us sometimes. EWE !! The bathroom is going to be a challenge! When can we get this cast off ???? Ava had a hard time going to sleep last night. She ended up sleeping in bed with me (so much for missing her bed) and only waking up once. She even slept til 6:30am, a luxury now! (I never thought I'd hear those words coming out of my mouth.)

Today Ava ate and drank better but was cranky, whiny and back to being very demanding.. She couldn't decide what she wanted to do or where she wanted to lay. It was like day one all over again! Just like before, we figured it out and she was able to do some of her favorite activities. I had moments today where I thought there is no way I am going to survive these next weeks to come then I hear Ava call me "Mama" (the name she reverted to since the last surgery) and say "I love you!" and I know we'll be okay. At the end of the week we go for a post op x ray to make sure she is healing properly. Even though I do not look forward to another cast I will be happy to get this one off. Being casted less seated is going to be a challenge. My hope is Ava's pain subsides quickly and the next four weeks fly by. I look forward to my tiny dancer fluttering around the house and regaining her independence. For now I'll push through the exhaustion and do what I can to keep Ava happy. As always, one day at a time. . . One day at a time.

My little Picasso!

The Next Day

Last night was pretty uneventful. Ava rested peacefully for the most part except when her vitals were checked, then she would cry for me. She is doing her best to be brave. She is definitely in more pain this time around. Every time a nurse asks if she's in pain or wants pain medication she says "no." By the look on her face you know that she is totally lying. She's very whiny and is really having a hard time getting comfortable. She's four! Pain meds are not her choice, they're mine. I think at this point it's better she takes the morphine and sleeps it off. Dr. A came to check in this morning. Things look good from the x ray taken right after casting. Ava will only be in her purple cast for 4 weeks! Yeah!! But once it is taken off it will be replaced with a Petrie Cast. What?!? Both legs will be casted straight with a  bar holding her legs in the proper position and chest waist and hips will be free. (Google a picture of it, should be interesting.) This will allow Ava to move a little more and be able to sit and even stand. This will remain on for 3-4 weeks. Oohhh! So really we have about 8 weeks in a cast to go...not what I wanted to hear! Ava is slowly coming around. She still has a low grade fever and a rapid heart beat.Her blood pressure has been fluctuating to the low side and she will have her Catheter in until tomorrow. Her Hemoglobin number is still on the low side and they are keeping a close watch, a blood transfusion is still a possibility. I'm slowly getting her to eat but after a few bites of anything she tells me her belly hurts. It's been a quiet day for us and she has been napping a lot which is great, she needs her rest. All we can do is wait now and see how the day goes.

Right Hip

Reading while waiting for surgery.

Surprisingly I got an okay nights sleep last night. We didn't even need an alarm this morning because Ava had me up at 5am! I can't believe we're on to the second surgery. I can't believe five weeks have passed already. Looking back I didn't think we would make it 5 days much less five weeks! So here we are...Ava was in great spirits this morning. She had her moments of whining and baby talk but over all she was cooperative. Of course I was a bundle of nerves but this time I wasn't nearly as anxiety ridden as last time. We knew what to expect and I really tried to be in good spirits for her. The waiting is always the worst! I left my baby in the OR at 9:15am and Dr. A came to speak with us at 2:30pm. Five hours and fifteen minutes!! It's a lifetime when your child is under anesthesia. The surgery went as expected and the left hip looks good, although there is some stiffness in it. We were in recovery for 2 1/2 hours and at 5:00pm we were finally able to get settled in our room. Ava now has her purple cast and the casting position is slightly different. Honestly it's making me a little nervous, she's definitely going to sit differently in everything.

Snuggling with monkey in recovery.

We are half way there....It feels great to be on the other side of both surgeries. Now we have to get through the first couple of days of recovery. Ava did really great immediately after surgery. She was alert, answered questions and was very aware of her surroundings. Once again there was a difference of opinion on her hemoglobin  and blood levels. The anesthesiologist felt her numbers were slightly low and recommended a blood transfusion but Dr. A didn't feel it was necessary. He wants to wait until morning and see how she is then. It's back to the waiting game. Ava woke asking for some water, unfortunately after drinking it she threw up. Luckily David and I had quick reflexes and prevented to much of it getting on her cast, sadly blanky got caught in the cross fire. A few hours later she once again got sick. I feel horrible for her! She can barely move and now she's getting sick on top of it. I remained pretty calm all day but now I am making up for it. I'm a nervous wreck about everything. The nurse must think I'm a nervous Nelly but our last stay in the hospital was not great and I'm not letting anything slip by. Ava was given some anti nausea medicine and hopefully she'll be feeling better soon.

My poor baby is laying in bed being so brave even though it is written all over her face that she's miserable. She's hardly complaining and doing everything that is asked of her. I have a feeling we have a long night ahead of us. I hope Ava feels better quickly and really be on to recovery. We have only 4 weeks to endure the purple cast then it's on to a smaller slightly more movable cast. I can not wait to be on the other end where it's time to get the cast off. I have such a strong little girl! So proud of her!! Please keep the prayers coming for a quick recovery. On our way to a healthy hips! xoxoxo

Here we go again...

I sit here tonight eating cheese balls (major comfort food) and drinking a glass of wine hoping and praying Ava's Benedryl kicks in soon so I don't have to run up the stairs for the fiftieth time tonight. Not only has her cast come to the point of being itchy it is compounded by her recent diagnosis of Fifth Disease. (For those who don't know Fifth Disease is a mild childhood illness caused by the human parovirus B19 that causes flu like symptoms followed by a rash.)Yep three days before her next hip surgery Ava comes down with this!! Really??!! Jack had Fifth Disease about three weeks ago, we thought we were in the clear but apparently it can take up to 21 days to come out. (Just our luck!) The rash started Saturday night and progressively got worse by Sunday. As we sat in Church Sunday morning Ava's cheeks became flame red and the lace like rash started on her arms, having just seen this a few weeks before we knew exactly what it was. For 24 hours we all were worried that this could affect her upcoming surgery. Once the rash comes out you are no longer contagious and on the mend. To be on the safe side we called Dr. A first thing this morning and we were told to see our Pediatrician and get medical clearance. At 4:30 this afternoon Ava saw Dr. K and we were reassured we could proceed as planned. Yeah!! Such a relief!! If this surgery was postponed they would had to commit me.

Tomorrow it will be five weeks since Ava's left hip surgery, looking at a calendar one could say "Wow! That went fast!", having lived it 24/7 I can tell you it has felt like 6 months. Ava has been  amazing through it all. Yes she has had moments that I just wanted to walk out the door but overall she has been content. The worst of it has been at night. She has a hard time getting comfortable and often wakes up. There have been many nights that she ends up in bed with me and David gets the luxury of sleeping in her bed. I always feel bad for him on these nights unless Jack thinks he should be in our bed to. Those nights David's the lucky one, there isn't a kid waking up every 15 minutes and another practically laying on top of him the whole night. We've learned to keep Ava busy during the day, including the help of Jack. He does his part when Mommy or Daddy really needs to get things done around the house. Jack has been amazing through this whole ordeal and has grown so much. The Spica chair has been a life saver, I highly recommend one to anybody who has a child that has to go through this. Ava can eat better and do all her favorite activities with out problem. When I given Ava's diagnosis and told about the cast I could not imagine how we were going to do it. But amazingly enough here we are 5 weeks later doing it and almost half way there. Who would of thought we would have the capabilities and strength to do it, certainly not me. Here we are preparing for the second half of Ava's journey.

Ava after frosting her cupcake.

Wednesday morning (July 18) Ava will have her right hip surgery. She is handling this news like a champ. She says "I will go to sleep with a pink cast and wake up with a purple one." There is no end to the bravery of this girl. I remember the feeling of seeing Ava in her cast for the first time, that sinking in my stomach, the sadness I felt for my baby and the thought of  "How am I going to do this?"  How quickly I learned it was doable and we made it through. This time we are better prepared for what is to come  and in ways it makes it easier. I know Ava will do all she can to get through the upcoming weeks and I will continue to do what it takes to make it easier for her. Please pray for my Princess P on Wednesday. Pray the surgery goes as well as the previous one, pray for the strength each of us need to make it through and pray my girl has two healthy hips when all said and done. I know Ava will make it through with flying colors, My brave, brave girl! xoxoxo

How much longer???

One week until Ava's right hip surgery...it's only been 4 weeks!! It feels like months!! I can not wait for the 18th to come. We will then be half way through with this Spica cast but of course the dread and anxiety is setting in for the surgery itself. Ava is doing amazing well. She's in great spirits and has really learned to go with the flow. We have to keep a constant eye on her. She now can pull her body across the floor with her arms and I caught her trying to stand up the other day. She pushed herself off her chair, put her feet on the floor and was holding herself up on the sides. Nothing stops this kid!! Obviously she's feeling better. We had a few nights that she slept well but it was short lived. Now she complains at night of itchy legs. I feel horrible for her, other then giving her some Benedryl there is nothing else we can do.

I am so done with this whole process. I want my life back! I'm sick of being in my house 90% of the time and we do go out Ava complains she just wants to go home. I'm tired of being at her beckon call and the constant attention and neediness. I love my children but there's something to be said for independent play. I'm tired of take out food but to tired to cook at night. I'm cranky, moody and my back and arms hurt from the constant lifting and moving. The cast is not all that heavy but the awkwardness makes it more difficult. I do get breaks from time to time but they're not very long. Quite frankly I'm to tired to truly enjoy it. I drink way to much coffee and just want to feel healthy again. In grand scheme of things I guess I should feel lucky I'm not the one in the cast. My heart breaks for Ava that she has to endure this. With the surgery one week away my eyes start to well up just thinking about her having to endure another long, painful surgery. She has such a positive attitude about her next cast and returning to the hospital. I'm sure once the day comes that may be a different story but for now I'll take it. Ava is such a strong brave girl and I am so proud of her.

Bottom line is having a child in a Spica cast sucks!! I know it could be worse and I try to remember it will come to an end. When people ask how things are going I always reply "We are doing great!" and I'm sure I will continue to reply that for the duration of this process. I try not to complain because it is Ava who has to endure the worst of it. This whole process is an emotional roller coaster for everyone and it is one ride I look forward to getting off. We are fortunate to have so many wonderful people in our lives. I am so Thankful for all the visitors, activities brought to my kids, the text messages checking on us, all the meals that have been made for us and all the prayers. 7 weeks!!! Then we will be on the other side. Once Ava is up and walking this Mommy is going on vacation!! Boy do I look forward to it!!!!