I've been here for years...(are you familiar with 90's rap? Sometimes my Mom makes me listen to it in the car..)
First off, Happy New Year!
It's crazy to think that I started telling you all about my adventures nearly 3 years ago!
Although I haven't really been keeping up my end of the bargain for the past several months, and since it is the new year and all, I've decided to resolve to try and write more often.
I really hope I can because there's so much to talk about! The last time I wrote was way back on March 10th and so much has happened in the past 10 months. Now that my impromptu hiatus is over I can catch you up on all of the adventures I've been having. After I do I think you'll understand why it took me so long.
The first big change that has happened in my life is the new addition to our family.
If you don't know already, I'd like to introduce you to my new baby bro: Alec John Carroll Sheridan!
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| December 2014 - Maggie, 2.5 yrs - AJ, 4 months |
Here are some fun facts about AJ and I:
- We were both born on the 12th (myself in April and he in August)
- We both have 4 names (Maggie Shae Ivy Sheridan & Alec John Carroll Sheridan)
- Both of our 1st two names are a combination of what Mom and Dad liked.
They really had a hard time agreeingThey tell me that it was an easy-going process choosing the "perfect" name for both AJ and I, and Daddy didn't at all come to Mommy's hospital room the day after she delivered a 9 lb 2 oz baby (9 days late, mind you) with a list of names for him after she thought they had agreed on one. Nope, nope. That would be crazy if it were true, right?
- Both of our 3rd names are homages to our Grandmothers' sides (and our Great-Grands too).
When I last wrote all the way back in March (whoa!) I wasn't even two yet, and AJ was still in Mom's tummy. As I said before, our bouncing heap of baby love was born on August 12th.
Way back then (when I was just a little kid) I had no idea what life was going to be like as a big sister, but now I'm a seasoned pro at it. I
I have to admit though, he's a good little guy and I think we'll be buds for a very long time...
Or at least until he starts to crawl.
Aside from that huge change in my life, there have been some other adventures I'd like to tell you about as well:
Another Birthday
Yes, yes, last April I turned 2! Here I am celebrating my 2nd birthday:
Cake, anyone? - April, 2014
It's a little crazy to think that now I'm actually almost 3! Time really does fly when you're having fun, and I'm sorta all about having fun, as you can see...
Look how little I was!!
Aw, me and Dad at the zoo..what a fun day.
2nd Annual Golf Event
A month after I celebrated my 2nd birthday my family and I (and lots of friends!) celebrated our 2nd Annual Grandpa's Gift Golf Event to raise money for Osteogenesis Imperfecta. It was incredible! Over $15,000 was raised during our 2014 event, which brings the combined total to $23,000 for both our 2013 and 2014 events!!
A big thank you needs to go out to all of the wonderful people that attended and donated, and to all of our event sponsors:
A to Z Auto, Gordy Hughes, Stanfield & Associates, IVY Marketing Group, Brad Skiba with Morgan Stanley, BP Wash N Go, Sport Clips, Chicago Flameproof, Lori & Ken Pawlowski, and Megalith.
The money generated went directly to those living with Osteogenesis Imperfecta. To find out where it goes and how it helps the OI community please visit The OI Foundation at www.oif.org.
To learn more about the event and to view pictures you can visit: https://www.facebook.com/grandpasgiftgolfouting.
You can also take a look back at our 2013 event here.
Just look at these awesome pictures from that beautiful day:
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| Gramma, Aunt Brandy, Mom & I at check-in |
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| Golf carts lined up and ready to go |
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| Over 60 golfers - what a great turn out! |
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| One of our sponsored holes |
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| All of our teams |
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| All my buddies & I had so much fun! |
We had so much fun and we're gearing up for this year's event, so stay tuned!
Breaks
I wish I could tell you that I've had no more breaks or 'issues' since way back in 2012. But, unfortunately, that is not the case. The reality of it is that I have had 3 more "breaks" and 2 more "issues" this past year. The reason why I am using so many quotation marks is because when I get hurt it's not exactly what you may expect. Let me explain..
#1: May 2014 (nearly 2 years to the day since my first breaks)
Back in May, a few weeks before our golf event, I went to the park. Like all other kids, I love the park! Except this day it had rained earlier and everything was a bit wet. I wanted to go down the slide, so I grabbed onto the bar, like I always do. It was wet and my hands slipped off. I landed on my back (specifically, my left shoulder blade) and slid down the slide and hit the ground. We knew immediately that something was very wrong.
Although I am a 'big kid' I'm still learning how to express myself, and I don't always know how to explain exactly where I am hurt (or even what the name of the body part is!). Plus, when something really hurts it radiates, so it's hard for Mom & Dad to understand where exactly the hurt is.
Anyway, we didn't know what to do or where to go. Mom and Dad didn't know if I could even sit in a car seat. Was it my back? Was it my spine? It was a very scary situation. Finally, they made the decision to take me to the ER, but when we got there the doctors and nurses didn't know how to treat me because they didn't know anything about OI. They took an x-ray (I was very brave) and realized I had fractured my left scapula (shoulder blade). The doctors were very surprised because they had hardly even seen this type of injury in adults, let alone a tiny girl. They said it's a very hard bone to break and they usually only see it in trauma patients (car accidents, ect.). I think they had a hard time understanding that I had broken it falling on the slide. They gave me a sling for my arm. It had dinosaurs on it and I really like dinosaurs, so I felt a bit better.
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| Spring 2014 At Good Samaritan Hospital |
Soon after, I went to a specialist and he monitored my shoulder. There was nothing else they could really do for it. Sometimes I wore my sling, but Mom and Dad were afraid I might fall and wouldn't be able to catch myself. Plus, I naturally kept my arm close to myself anyhow since it hurt. I even had to stop going to swim class (note: I'm going to a new class now!). However, after about 2 weeks I was using my arm again as if nothing had happened.
Most people think that little kids need to be taught a lot of things, but really we know what's best for us sometimes too. I knew when my arm hurt and when it was better.
For a long time I talked a lot about falling on the slide. When I went back to the park I was a little scared and nervous to play, but eventually everything got better.
#2: June 1, 2014
About three weeks after I hurt my shoulder (the day after our golf event) I was running at home. I was just playing a simple game of chase with my cousins when I fell to the floor and started to cry. No one knew what happened. Did I step on something? Did I run into something? Did I trip? My little cousins didn't understand why I was hurt. How can a kid get hurt just running? It's hard enough for adults to comprehend, but for little kids it's very confusing.
But it was true. For the next day I said that my leg hurt and I didn't want to walk on it. I tried crawling around (because kids are so resourceful!) to get where I wanted to go. Again, everyone was confused, "what should we do?" It wasn't like I was screaming and crying. It just wasn't what you would expect it would be like. I just went on about my business, I just didn't want to use my leg.
At one point a specialist had told Mom and Dad that they would just have to use their discretion when I get hurt, and eventually they would know when to go to the ER and when to just monitor it. He said they would start to understand as time goes on. Mom and Dad say that you never really get used to it or feel comfortable making those decisions as a parent. How can you be certain you're doing the right thing? It's a very scary feeling.
This time, Mom and Dad decided to bring me to an Urgent Care that another family with OI in the area goes to. Through the OI Foundation people like us can meet other families that also live with OI and share their experiences with hospitals and doctors. Sometimes it can feel lonely when you are going through something that no one else is going through. Although we have one another, It's nice to have other people to talk to and be able to learn more about what to do. Getting help and support from the OI Foundation has helped so much. After all, that's part of their mission!
So back to the story about my leg:
They took another x-ray (again, I was really brave!) and said something on my leg bone looked 'suspicious'. I again went to a specialist and he gave me a walking boot. They said I'd have to wear it for 3-4 weeks as a precaution. Again, I just went on living my life as if nothing was different...
I hobbled around and people said it was "cute." I'm sure I did look cute, but sometimes it made Mom and Dad a little bit mad. Although none of those people making those comments could've known I have a bone disease, each time they heard those comments they thought, "it's really not cute that our sweet little girl gets hurt all the time doing things she loves."
The fact of the matter is, there are lots of people out there that are living through lots of things that we can't see from the outside looking in. A lot of people are going through a lot of stuff. I guess that's just life, right?
Part of dealing with OI is having to deal with a lot of people making a lot of comments all the time. About my size they say, "she's sooo tiny!" about my disease they say, "oh yeah, I have issues with my bones too." The list goes on and on.
It is definitely a practice in self-control and restraint for Mom and Dad not to tell every single person about my situation and say, "if you knew about her situation you probably would think twice before making that comment." What's an even bigger practice, though, is that each time someone does make a comment that can be offensive or hurtful to us (albeit unintentional) that Mom and Dad just recognize that it's an opportunity to be grateful for what we do have and what I can do, and to learn that when we see someone that doesn't look normal or act normal or doesn't represent what everyday society deems as normal, that we simply just shouldn't judge them. In any situation. Ever.
It's hard to do, but the best we can do is just try. I think they are trying to teach me that.
Everyone has their thing. I'm learning that if we are all nice to one another and just all enjoy what we do have then we can say that life is good!
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| Me and Dad, enjoying life - summer, 2014 |
#3: June 2014
About two weeks after my leg incident (and still healing from both my shoulder and leg injuries) I was visiting family in Michigan while Daddy was on a business trip when I was hurt again. Just as Mom, Dad and I had gotten used to these "little" injuries and learned how to deal with them, life threw us another curve ball.
We decided to visit a little splash park with my cousins - what could be more fun, right? I was standing around enjoying the sprayers when another little kid came running by and bumped into me. Well, smacked into me might be a better description...
I fell onto my butt and started writhing around in really bad pain. I had a hard time breathing and I was trying to cry, but something in my back hurt so bad I couldn't. Mom took me off to the side so she could see what was wrong and calm me down. My Gramma, Aunt and cousins were very scared.
No one knew what to do. They contemplated calling 911 because they didn't know if I had hurt my spine, or if I could even breathe. After about 10 minutes I calmed down a little and could talk a bit. Then I was able to sit in my car seat. I kept telling everyone that my back hurt and I kept breathing weird. By the time I got to my Aunt's house I was feeling better. About an hour after that I was able to stand and walk. Everyone wondered how badly I was hurt, or if I just got the wind knocked out of me. We were out of state away from my regular doctors, so it made the situation scarier for Mom and Dad. When Mom called him she couldn't get in touch with my specialist. To make matters worse, Dad was away on business. He was scared and worried for me too, but also needed to concentrate on his work, which was very hard to do.
As time went on that day I started playing with my cousins again and enjoying myself. Every once in a while I would wince in pain or say it hurt, but for the most part I was back to my old self again. Mom called the doctor again and still could not get any advice on what to do. The receptionist said she'd try to get in touch with the doctor and would hear from him by the end of the day, so we decided to just wait it out until we heard. That night she still didn't hear back.
The following day I felt okay. I was still having lots of fun with my cousins and Mom still hadn't heard from the doctor. She figured no news was good news. Around noon she wanted to make sure, so she called the doctor and the receptionist told her, "Didn't you get our message? She needs to go to the ER immediately!" Mom was pretty scared. She never received the message and wondered why no one had tried to call back to talk to her in person if it was so important. What if she hadn't called back?
She knew I'd have to get an x-ray, and since she was pregnant she wouldn't be able to take me into the x-ray room. Back then I was still scared to go into the scary machine room and I would cry. Thankfully, Aunt Brandy went and we all 3 took a trip to Mott Children's hospital at The University of Michigan in Ann Arbor. Although it's a great hospital and all, it's nowhere you want to spend your vacation...
We were there all afternoon and evening. When I walked in they wanted to know about the walking boot I had on. We had to tell them that that was a whole other story...
I watched a lot of movies and a lot of people came in to visit me. Mom had to explain to the nurses what OI was and about the different types. I could tell she was frustrated again and scared that there were no specialists on-hand to see me, even at such a renowned Children's hospital. But she was glad Aunt Brandy was there to keep us both company, especially since Daddy couldn't be there (he was worried sick!). After an x-ray they said that the pain was due to a compression fracture in my lower spine.
I had had a compression fracture when I was 6-weeks old, but Mott could not see any of my x-rays from that hospital. They could only read the x-ray reports, so they didn't know if this one was new or old. The doctors were hesitant to let me go before they knew for sure, so we had to stick around until they could figure it out. Eventually they made the decision that because I was getting around okay and I didn't seem to be in pain that I could be released. They wanted me to see my specialist back in Illinois as soon as I returned home.
A few days later I saw Dr. B (my specialist). He apologized for the communication mix-up about going to the ER. He admitted that some things needed to be worked on in their office regarding children with specialized conditions and their protocol. It made us feel better that their office was working on things like that since my situation is different than most.
After taking a look at both sets of x-rays Dr. B said that it was actually a new compression fracture. He could tell because my old fracture was in a different spot. Since the doctors at Mott couldn't see my old x-rays they couldn't have known this. No one really could believe I was walking and climbing around on a hurt back like that right after I hurt it. But, I'm pretty tough.
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| Playing in the hose the day I hurt my back - 2014 |
After a week or so I was again back to my old self. The doctor said to stay away from the park, slides, and especially splash parks. It was a little hard to do since it was the middle of summer. Mom and Dad were like soldiers on a covert mission when we went for walks. They took alternate routes and tried to distract me all they could anytime we were near a park or other kids were doing things that I couldn't. I talked a lot about what happened to my leg and my shoulder, but I never really talked about my back. About 2 weeks after I hurt my back I found my play slide in the backyard. Before Mom could say, "stop!" I went down and hurt my back again. Mom felt so terrible and the slide quickly disappeared for the rest of the summer.
Note: in September I went for my yearly visit to see my Orthopedist and Genetics team at Lurie Children's Hospital in Chicago. They said I was doing good and asked to have a follow-up x-ray on my back. I had that done on September 25, 2014.
#4: January 13, 2015
Just a few weeks ago I was running after Daddy and I slipped on my pajama pants and fell back on my butt again. I started to writhe around in pain again and have trouble breathing because it hurt so bad. Mom and Dad looked at each other and started making the calls to the Children's hospital and my genetic counselor, geneticist and specialists. They started to rearrange their schedules and make plans to immediately take me to see the doctors, and they contemplated taking me to the ER again. They were scared at what could be wrong, frustrated that they didn't know what to do, and sad that I was in pain again. Was it yet another compression fracture? Or had I aggravated the old ones?
This has come to be somewhat of a unpleasant, yet common, practice in our lives.
Vacations are nerve-wracking for Mom and Dad, as are parks, get-togethers with other kids and really any other public place where I could potentially get hurt (which is everywhere). Them thinking about me going to school, oh jeez, that's a whole other beast entirely...
I guess that's just how it is. I'm sure no one ever gets used to it, but each time something happens they just say they are thankful that it's not something worse.
Speaking of being thankful, back to that day I hurt my back..
After watching my favorite show, Peppa Pig, and having some hot chocolate I started to feel a bit better. Then, after a few hours of laying I was able to get down and start playing again. Over the next few days it was aggravated a few times, but for the most part I just went on about my day. The next week I went to Michigan to visit my family. There I fell several more times. Each time I did it hurt, so Mom made an appointment to see Dr. B when we got back to Illinois.
On January 26th I went to see Dr. B. At first I didn't want to go, but then I was okay with it. I was a very nice girl and I had a lot of fun at the doctor's office! I read in the waiting room (for all to hear!), talked to Dr. B., and he gave me a little metal hammer to play with after he checked my reflexes. He is a really great doctor and he asked me all kind of questions and even gave me stickers! After talking to Mom he said it would be best to take another x-ray. He has a funny poster in his office of all the bones in our bodies. Mom and I looked at all the bones and sang the bone song ("the foot bone's connected to the leg bone.."). It was fun. Then we talked about how I needed to stand still like a statue when I get my bone picture taken. We practiced standing like Anna in Frozen. A few minutes later I went in the room with mom and got my picture taken (on the 1st try!). After that we went back in to see Dr. B. and he showed me my vertebrae. I even got to sit with him on his spinning stool!
We got some good news: no new compression fracture and the old one seems to be healing really well! The pain I feel when I fall might just be because the old injury is getting aggravated. I used to be really scared to go to the doctor, but now I know that there's nothing to be scared of.
Whew! That's a lot to report about.
So, that brings us to today...
If you didn't know me you would never even know that I've gone through all that stuff. I really just get up each and every day, a bit stiff, but happy, sweet, silly and ready for any little adventure to come my way. These days you can find me building with blocks, doing puzzles, reading books, coloring and painting, climbing on things I shouldn't and wanting to watch way too many shows.
Do you know a kid like that? Yep, thought you would.
If you've found yourself here at the end after reading this post in its entirety, I feel you deserve a reward. Since I'm getting really good at talking and learning to express myself here are some of my favorite one-liners:
- When I'm frustrated: "Uggg, that's impossible!"
- With most things: "I love it!"
- When in trouble: "Stop talking"
- "Tickle me, Daddy" - then I lay on the couch with my arm stretched out for an arm tickle
- "That's disgusting!"
- I also recently discovered tattling: "Mama, Daddy's talking to me"
- When I don't want to do something: "It's embarrassing!" (although it comes out "embossing")
- When using the bathroom: "I need privacy"
And here are some more highlights of my year:
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| Meeting the Easter Bunny at The Morton Arboretum |
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| More cowbell! - Trick-or-treating in my 'hood |
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| 4th of July neighborhood parade |
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| Summer concert in town |
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| First time meeting my bro - I was super excited! |
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| My first Downers Grove North football game! |
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| Visiting Santa's gingerbread house |
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| My very 1st time meeting Santa!! |
So long for now (but hopefully not too long!)
Hugs,
Maggie Shae
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