Aug
28th

Chiari Malformation ~Inspiration Through Art~ |Indianapolis Photographer

As many of you know, volunteer photography is a big part of my business. One of my favorite organizations is Inspiration Through Art . Through them I have met some incredibly inspiring children. I never thought one of my own children would be eligible for an ITA shoot. As far as I knew, I had 4 very healthy children. Then things changed. Back in January my 13 year old daughter was at basketball practice and she got hit in the back of the head with someone’s airball. She saw stars, got a little dizzy and had a headache, but carried on with practice. She came home later that night and told me about it and that her head was still hurting. I was like well yeah, I’m sure you do have a headache. Take some motrin and go to bed. She woke up the next morning and said her head still hurt. I was a little concerned but she wasn’t showing any concussion like symptoms so I had her take more motrin and sent her off to school. When she got home her head still hurt, so I called the doc. We got in the next day and she said she had a mild concussion. She gave her no restrictions and told her to keep medicating with motrin and or tylenol as needed. For about 3 weeks she had a constant headache. Then it subsided to only when she was active, playing in her basketball games, practicing and when she practiced hitting and pitching for softball. She is such a tough kid. She still did it all with the help of motrin before she would go to practices/games. We let it go for awhile thinking it was post concussion syndrome, but when it didn’t go away and started happening more intensly so back to the doc. He thought the same, that it was more than likely post concussion, but he ordered an MRI to be sure all was ok. The MRI came back and they told us she had a chiari 1 malformation. This is something she was born with, but she didn’t have symptoms until she got hit. We were told by many “oh that’s nothing, a lot of people have them, nothing to worry about” … etc etc. So I was starting to feel better, but then our doctor wanted us to go see a Neurosurgeon at Riley. That’s when I got scared. I read everything I could get my hands on and by the time we saw the neuro in May, I pretty much knew everything she ended up telling us about it. After examining Makayla, she said at this point we could wait and watch as her symptoms weren’t all that bad, but she recommended surgery because it did seem to be affecting Makayla’s quality of life. She was right. It was. My once very athletic kid was coming out of the pitcher’s circle in tears in the middle of games. Her coaches were needing to ask her before games if she was going to be able to pitch or not. Did she have a headache, how bad was it etc. So we opted to go with the doctor’s advice and set up her surgery. We held off til after the world series so she could finish out the season with her team, but it was evident there that she really needed the surgery. The last few weeks before her surgery I was having to drive her to and from school (she usually walked) because her backpack was too much for her back. So what is Chiari? Here’s a little thing I put together with some basic info.

There are many other things that can go along with Chiari, but this is basically what we are dealing with with Makayla so far.

When we started going through this, the photographer in me decided we were going to document through photos and create an awareness video. I am still working on putting that together, as I want more information included. Plus, I want to add an “after” story for her.  So a few weeks before the surgery I applied for an Inspiration Through Art shoot. Only I specified that I wanted to do the photos myself. The only reason I was signing up is because ITA features their Heroes and tells about their illnesses. It helps spread awareness, and that is what we are looking to do. This isn’t well known, and the information you can find is very conflicting, as well as the fact that it’s hard to find success stories out there. My request got accepted and then I took her out and did phase one of our story…. Here are a few of my favorites from that session.

This kid is such a fighter. She is so strong. I can’t imagine doing all of the things she did with constant head pain and dizziness and neck and back pain. She is an inspiration to me.

 

She never let it keep her down. She got out there and pitched some of her best games. When she wasn’t pitching, she played short stop. A position she’s never played before this past season, and she did it so well. This kid likes to win, and she’ll do what it takes to make that happen. That’s how I know she’s going to win the fight against chiari.

 

 Look at that smile. She’s got this! 🙂

 

 

Did I mention she’s tough?

 

Through all of this, my one constant has been God. I have grown so much in my relationship with him during this time. In fact, his faithfulness during this time led me to take the next step and be baptised last week. I hope that Makayla and my other children are learning by my example to lean on Him and trust in Him. I have gone back and forth between thanking Him  and pleading for her health and asking why, and then realizing how many people have it so much worse and thanking him again that this is something that we can manage and find treatment for. I have prayed for full healing. I have prayed for her ability to cope with whatever she is dealt, and mine as well. I prayed for her surgeon and her nurses and anything and everything I could think of that would help her. Facebook was an amazing tool for creating prayer chains. I am pretty sure there was someone in every state and in a few other countries praying for my girl. It was humbling and overwhelming. Her softball team was incredible. We have been a part of some great teams (great as in the players, coaches and families have been wonderful) and some not so great … but this team. The Indiana Diamond Batz   has exceeded our expectations. They are a good solid Christian based organization. They do great community service projects and teach our girls more than just softball. They are shaping them and becoming family while they are at it. Nearly every girl on the team made it to the hospital to see her, as well as her coach who also made a point to come up during her surgery to support us as well. Our families of course were amazing, but we are spoiled with great families and that was to be expected!

So on our surgery day of course we were nervous! VERY Nervous! Here’s Makayla getting her mask all smelling like Dr. Pepper for when it’s time to be put out. I think it just hit her here what was about to happen …

sending her back for surgery had to be the hardest thing I have ever done in my life. I gave her her hugs and kisses and we both cried… and then when they wheeled her down the hall I turned to the hubby and bawled some more. And then when we saw the fam up in the waiting room … AGAIN. lol.

Here we are FINALLY reunited with her 🙂

I have many many pics of all the family and friends who came to see her, but that would take way too much room on this blog. At the end I will include a link to our full album on Facebook. I did want to post this one though… what a precious moment. Her best friend came in the room and that was the first time she opened her eyes and smiled after surgery 🙂

 

The first thing she wanted to eat was about 24 hours after surgery and it was McDonalds Chicken nuggest. lol… whatever it takes to get her to eat!

She did really well after surgery. She slept a lot the first night, but the next day she was awake all day. It was probably her hardest day, but she mainly complained about not getting a regular room. Apparently we hit one of the busiest weeks ever at the hospital and they didn’t have a bed for her on 9West so she was stuck in ICU longer than normal and she was not happy about it!

Here she is out of bed for the first time after surgery 🙂

and I did want to show the pic of when most of her team was up… a couple of them came up the night before, but this group was there all at once, so we got a group shot. Such wonderful kids and families! 🙂

and of course we need a photo of the scar … isn’t that amazing? Dr. Jodi Smith is wonderful and I highly recommend her! She did a fabulous job.

Makayla’s surgery was Wed afternoon and the following Sat morning we were on our way home. I am amazed at how fast the recovery has been so far. I know we may not be through all of the rough days, but she is doing very well right now!

She had a hard day the day after she got home from the hospital, but it was my fault. I let her go too long between meds. Once we got her back on track it was all good. She spent the first week hanging around the house, resting on the couch mostly, but near the end of the week she made it out to 2 school football games, then she did a community service day with her softball team, went to church on Sun and this week less than 2 weeks after surgery she has returned to school half days. It will be 2 weeks tomorrow since her surgery! She says she feels like she never had brain surgery. Her head hasn’t really been hurting other than some minor sinus headaches a time or two and she said she can carry her backpack again without pain in her back. I can’t wait to see how she does when she’s allowed to get back to her sports. I know it’s all in God’s hands and all I can do is trust that he’s got this and no matter what happens, it’s all part of his plan. I am so happy we went through with it though. Her surgeon said it was much worse than she had thought it to be and it’s a very good thing we got her in. Again, lots of prayer led us to that decision.

I plan to do an update at 6 months and a year post op. In the mean time, if you’d like to see ALL of the photos from this journey, go to the album on facebook here 🙂 http://www.facebook.com/media/set/?set=a.10151083279916539.482743.113535496538&type=3

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