Road Trip! and, A New Taste

Road Trip!
Yesterday we all went on a road trip, and I'm not talking 4 hours to Michigan, I mean 8 HOURS to visit The Swanson's in Kansas City!!  On the way we stopped in this place called Iowa City and I think my daddy actually started drooling like me!  He was pointing out all the places he loves so much because this is where he went to college.  He had the goofiest grin on his face and he was just so excited to be there! He and I took a picture in front "Old Capital" and he said that I would be back in about 18 years.  He was telling my mommy how The University of Iowa was voted the #4 party school and my mommy said that she's not so sure Iowa is the place for me...
The drive wasn't so bad.  We saw lots of corn fields and grass fields and wheat fields and any kind of other field you could ever imagine.  My mommy said, "This is the place for me!", and my daddy said, "NO WAY!".  I guess opposites do attract!
After about 7 hours of fields I started to get boooored!  No one was listening to me complain, so I knew I needed to turn on the waterworks to get any kind of break from this madness.  I screamed for a good 15 minutes, and then I puked, and then they took me out!  So my plan worked...kind of.
I was so excited to see my aunt and uncle and cousins, and they were so excited to see me too!!  I was so glad to be here.  I hope I don't have to get back in that car seat for a long ride anytime soon, but they tell me that they are nervous for Monday morning.  I'm not so sure why though....

A New Taste
Sweet potatoes, blueberries and carrots, oh my!
This morning another new adventure happened.  I ate real food!  My mommy and daddy put me in this big seat thingy and put this giant bib on me and they stuck this smooshy stuff in my mouth.  At first I made funny faces and everyone laughed at me because it was a new taste for me.  It was a wonderful taste!  I can't wait to have more of that stuff!!
Here's a video.  I hope you can see it:

Gettin' Schooled; I Found My Feet; and, James Brown!

Gettin' Schooled
Surprise, surprise! My mommy and daddy are still trying to figure out what to do about my treatment.  My daddy has been so busy at work, but he still takes time out of his busy day to call all kinds of doctors to try and figure out the best treatment plan for me.  He's called all over the country: Baltimore to Omaha (wherever those places are!), and what he found out is that all of these different hospitals aren't even really talking to one another about this kind of treatment.  Now, isn't that a silly thing to be doing? Hmmm, my mommy and daddy were confused about it too, but I'm used to the confusion by now.....
It seems that my mommy and daddy need to learn all they can about this because every doctor has a different treatment plan, and it doesn't seem like any of them are sharing their findings with one another.
There is a special doctor in Baltimore who wants to do more about this though.  He is calling around all of the other doctors to see how they do their treatment.  I hope he helps everyone try to find one way of doing this because it is frustrating for people who are just trying to help their kids.  My mommy and daddy aren't doctors, but they really have learned a lot and have to know as much or more than the doctors do.  My mommy is also talking to some nice moms from this Yahoo! OI group she joined.  She posted a question about treatment and two nice ladies wrote back about their stories.  This makes my mama feel better because it's nice to talk to people who are going through the same things as us.  They gave her good advice about gettin' schooled in all things OI because we have to be our best advocates.

I Found My Feet!:
Now let's get down to the most important topic...my feet!
The other day I was just hangin' out, like I usually do, looking for something to grab and stick in my mouth when, Eureka! I had found something interesting.  I pulled and tugged, but it wouldn't come close enough to my mouth.  My mom got all excited and up in my face, smiling her toothy grin and acting all happy, saying something about something (that's how it usually goes).  I didn't really pay any attention to her until later on, when I did it again.  I looked down and, holy Toledo! The thing I was grabbing was my own foot!  You know, I have been trying for about two or three days now to get that tootsie in my mouth.  It's close, but no success just yet.  You'll be the first to know when I get it...well, after my mama and daddy, of course.

My mommy says she often puts her foot in her mouth too, 

but I've never seen her do it. She confuses me sometimes!

JAMES BROWN!
Yesterday I sure was a crab-a-saurus, that's what my mama calls me when I get crabby as all get-out.  I know, you didn't think it was possible that I could do anything but smile and be prefect, right?  But I'm learning real quick how to do this thing called crying when I want something RIGHT NOW!  And it seems to work real good.
Anyway, since I decided to stay awake as much as possible yesterday and I slept for oh, about 40 minutes all day long, I wanted to give my mom a break today so I slept and slept.  When I woke up though the miracle that is James Brown and The Beach Boys was before me.  My Papa always gives me music lessons each day that I see him, and I'm not talking about Elmo or lullabies (although I secretly love those too).  I'm talking about The Beatles and the like.  True musicians!  I was dancing and singing today.  My mom even took time out of working to come in to watch me go at it, although by that time I was a bit worn out.  When I dance I throw my hands out and make my chair rock back and forth and I scream and make sounds.  Everyone thinks it's quite a sight.  I hope you can see me in action one day!

Hey, I'm 4-months-old!

Happy 4-month birthday to me!

I'm laughing at mommy and daddy because they put this ridiculous flower in my hair, but boy do I look cute!  Mr. Ellie is getting smaller and smaller because I'm getting so big!  Do you like how I'm showing you my new dress?

Here are some things about me this month:
length: 23 1/2 inches
weight: 12 1/2 lbs
head: big!
I am wearing 3-6 month clothes and my mommy is worried that I will grow out of them too quick!
I can hold my head up on my own now!
I can sit while supported!
I "talk" a lot and I love to make raspberries, and I LOVE when people make sounds at me!
Oh man, my tooth still has not come in!
I've slept 10, 11, & 12 hours! (but sometimes I still wake up in the middle of the night...)
I LOVE to look at myself in the mirror!
I turn to see when someone comes into the room
I'm almost rolling over!

I'm a big girl now!

Not Just a Coincidence

Mike and I have been debating, and trying to avoid talking about. Maggie's treatment.  As I've said before, both hospitals say that Maggie is doing much better than they originally thought.  Children's recommends waiting to see how she does in the next few months, and Shriners recommends starting treatment soon because it will only improve her bone density.  We have another follow-up appointment with both in November, but we can't seem to choose just one of these hospitals, mainly because I tend to "side" with Shriners and Mike with Children's.  We both have our views about it, which we are entitled to.  I mean, we both have the best interest of Maggie at heart, so it's not like one of us is right and the other is wrong here.  It is just frustrating and confusing for the both of us.  Both of them are saying different things about treatment length and how it's administered: Shriners, obviously with a lot of experience with OI, says every 2 months for 3 consecutive days and they recommend having a port put in her, and Children's, with less experience, says every 3 months for 1 day and they haven't said anything about a port.  So who's right?
Well, something happened last night that makes me believe that certain events cannot be "just coincidence".  And I think it may have swayed my vote...
I'll start this by saying that about a week ago I got a call, out of the blue, from the doctor who delivered Maggie.  She is absolutely wonderful and she's one of those people in your life that you are so thankful to have met. It was a social call and she was just checking in to see how Maggie was doing.  You see, after Maggie got out of the hospital, when we first found out about her breaks but hadn't had a diagnosis yet, I had gone to see her to ask if she noticed anything unusual when Maggie was born.  She had not, but in talking with her about Maggie's problems she mentioned that it could be OI and then she passed along our information to the Director of Fetal Medicine at Illinois Masonic (which is where we had Maggie).  Now, this woman is an amazing doctor.  Not only did she take the time out of her busy day to stop and talk to us when we stopped by her office unannounced, but she asked the Director of Fetal Medicine take a look at Maggie's ultrasounds and then had him call to talk to me directly.  Plus, she called us three months later just to check in.  Can I tell you how good that feels?  We have dealt with some really bad doctors, but the good ones just negate all of that.  It, literally, gives me goosebumps and gives me hope in humanity that there are still doctors that treat patients with old-school values and actually care about their patients enough to go above and beyond. Good doctors need more recognition!
So, anyhow, I had been meaning to call or write her a note since then, but I hadn't gotten around to doing it.  So, last night we were taking a walk to get dinner and we had just started discussing how we need to make a decision about Maggie's treatment, but we've been avoiding it because we are both so confused, and we literally (and I mean LITERALLY) had just said that we need a third party to split the decision when we hear, "Jessica?".  I look over and it's Dr. Starr (her name is so fitting!)!!
She asked how things were going and we asked her opinion on Maggie's treatment and she gave us some much needed medical insight.  Namely, that sometimes people (even medical professionals as well) do things because it's what they've been doing for a while, and they've gotten good results that way, which is understandable.  But, although it's a good way of doing things, it might not be the best way.  I don't want to get into comparing hospitals or saying one is better than the other, because they both are great, but we do want this process to be the least bit traumatic for Maggie since she's already been through enough.
So, with that said (and I may be hiding my fondness for one treatment plan over the other under a veil of vagueness right now) the main reason I am writing this post (take a look at the title again) is because if you know me you know that, although I am a believer in science and I'm not all that "religious" in terms of  the 'organized' kind (meaning that I am very spiritual and believe that the "higher power" that I have faith in is within myself, and each person individually, although I do recognize and celebrate everyone's right to their own beliefs), I do believe that things happen for a reason.  I was just speaking to my mom about this yesterday because there are too many things in my life that have happened to bring me to the exact place that I am right now.  If you look at them altogether it is eerie, in the sense that it makes sense!  Am I still making sense?!
Anyway, what I'm trying to say is that I couldn't be more grateful that Maggie is in my life, and I know a lot of other people feel the same.  I have read blogs where parents say the same thing about their child with OI.  Yes, it may seem sad from other people's point of view that our child isn't "perfect", but no one's is.  You love your child no matter what.  You may be thankful that your child doesn't have OI, but I feel like having a child with OI (or any special needs) makes us never regret a single thing, and to always be grateful for the small, everyday things that others may overlook.  Yes, we get the people that pity us in a way that makes you feel mad, as in, you know they are hoping they never have a child like yours and they feel sorry for us.  I know they don't mean to, but some people just don't realize that there are many, many people out in the world that struggle everyday, and the rest of us take it for granted.  I was in that boat too.  If we focused more on helping, kindness and fairness, instead of hurting, competition and greed then the world just might be a better place.  No, it WILL be a better place.
The main point here is that we shouldn't focus on our differences, we should celebrate the similarities.
I may have gotten that from a poster at school...but obviously it stuck with me, and they are definitely words to live by!
I'm glad to have my Maggie Shae, as are her other family members too.  She's going to teach us all so much, and change all of our lives for the better.

Do you like my bracelet? I did it all by myself!

I'm pretty special, but I don't like to toot my own horn.

My First Street Fest and This Is Why I'll Miss The Olympics

My 1st Street Fest
Something wonderful happened!
On Saturday, my mommy and daddy took me to my first street fest!  They said it's a right of passage if you live here in Chicago, and I'm glad I finally got to see what all the fuss is about.
The three of us just walked around and took in the sights.  Daddy carried me around in my carrier and I just dangled with my green sunhat on.  Their were lots of other kids there for me to watch and things for us to see. It was a beautiful day out and we had a great time.  Mommy and daddy stopped to talk to a man about a painting, but I thought it was too pricey, so I began to protest.  That sure got them out of that booth fast!  I was getting a little steamy in my carrier anyhow, so they took me out, but they didn't take the stroller with them (rookie mistake) so daddy had to walk back to the car and get it.  While he was doing that mommy and I sat under a tree and it was so comfy that I fell right to sleep!  When I woke up we were back at the fest and there was loud music and a lot more people than before.  Mommy and daddy ate some great food and we just watched the people and listened to the music.  Then it was time to go home...
I sure did have fun the Chicago way.

Why I'll Miss the Olympics
Okay, I have to admit that I don't even know what The Olympics are, let alone why my mommy and daddy loved watching them so much, but what I do know is that I LOVED the closing ceremonies!   I danced and jiggled around in my bouncy seat and everyone laughed and got such a kick out of me, but I was just being myself.  I loved hearing the music and seeing all of the lights and colors.  I especially loved when the boy band came on.  What can I say, I'm my mama's daughter!  My Papa said he's never seen a baby act like that before.  "Get used to it!" is what I say, because I am one super baby!

Oh man, mommy put a video here of me, but it didn't work so good...oh well.
I can't believe that I'll be 4-years-old when The Olympics come around again!

Spread the Word! Donate to find a cure for OI!!

Help us spread awareness, raise funds for research and work towards finding a cure for OI!  

Make a donation on my donations page https://secure2.convio.net/oif/site/Donation2?idb=0&2561.donation=form1&df_id=2561 and wear your jeans on August 24th.  Can't wear jeans?  When you donate you can get an Unbreakable Spirit bracelet to show your support! It's a win-win!!  

100% of the proceeds go towards OI awareness and OI Foundation programs.  

Spread the word at your workplace, school and community.  If you want to get involved e-mail my mommy at jcgottman@yahoo.com or jcsheridan78@gmail.com and she'll tell you how...it's SUPER easy!!


Thank You! Thank You! Thank You! Thank You! Thank You!

I know we can all do this together!

Our Meeting with Shriners, Part 2

Shriners, Part Deux

Monday morning we woke up bright and early to go see the doctor at Shriners again. My mommy and daddy were very relieved, but also very confused after hearing what the doctors had to say about delaying treatment at Children’s.  Of course they don't want me to have to go through treatment if I don't have to, but they want to make the right decision.  So they wanted to hear what Dr. S at Shriners would say about me and my progress.  

Since OI is so rare, and the treatment so new, not much is known about the affects of treatment on people when they get older.  My mommy and daddy think that this is very scary.  Also, the doctor at Shriners wants to put a port in me.  That is a little thing that makes it much easier to get my medicine, rather than getting stuck with a needle each time..ouch!  Since I am going to have to go for treatment about every 2 months for 3 days each that would be a lot of sticks, but they aren’t sure what to do just yet. 

Dr. S. at Shriners was also impressed with me!  He said that I look more “intermediate” rather than pretty severe, as they thought in the beginning.  I’m sure I really scared everyone before because I had a lot of breaks.  But, I am eating and growing and everyone seems to think that I am doing great!  And that is great news.

Dr. S still thinks that I should have treatment because he says it has been shown to really help kids with OI, even though I am doing better than he thought.  Mommy and daddy need to decide soon, but how do you make a decision like this?  I don’t know, but I’m glad I don’t have to make it.

As usual, during the exam I was a peach!  I was very interested in all of the people in the room, and they have a big, huge mirror there that I love to look at.  I see this really cute baby looking back at me and I would really like to play with her.  She seems so interesting and nice.  After a while of being perfect I got tired and hungry and I started to cry.  “Everybody out!” I shouted, but they really didn’t listen.  Eventually I gave up and quieted down. 

So now we feel a little bit better that all of the doctors seem to think I am doing better than they thought, which is great news.  But (yes, there is usually a but) there is still a lot for us to decide.  

Between looking for a house, mommy switching jobs, daddy working long hours, and all of the decisions about my health you would think we wouldn’t be able to sleep at night!  Well, I don’t know about them, but I slept 9 hours last night!   Hooray for me!

My Date with Daddy; Mommy's New Job and Another Shriner's Appointment

This weekend my daddy and I spent some time together.  It was very fun!  We dropped mommy off at the spa so she could spend some time with friends and then daddy and I were off on our adventure.
We visited some friends and we took a walk around our neighborhood.  Daddy put me in my carrier so I could look around and see everything.   Later that night it was three men and a baby because my daddy had a couple friends over.  We all sat around watching The Olympics and UFC.  They taught me a lot about boy stuff, which is good because usually my mommy and I talk about girl stuff, so I get to learn about both!
Since my mommy was away I decided to sleep ALL NIGHT for daddy.  Lately I've been waking up once or twice in the night because sometimes I like to be a stinker.  My mommy said, "isn't that ironic?",  whatever that means.  I think my mommy is feeling left out and hopes I sleep through the night more now for her...I guess I will try.
I think I am getting ready to grow soon.  I usually eat between 5-7 ounces every couple of hours and I take big naps during the day.  Also, my gums have been hurting me for the past few weeks.  At first mommy kept trying to put things on my bottom gums because she thought the teeth were coming in there, but I kept putting my tongue down there to block it.  She was very confused by this, so when I went to the doctors they told him they thought I was teething, and he said I was too young.  But guess what?  They took a look and said I might be getting teeth on the TOP!  There are two bumps up there and I really like to chew on my hand because it makes them feel better.  I wonder when I will get my new teeth?  Hopefully soon because I stare at people while they put stuff in their mouths and chew and I am interested in doing that too!
I am a very inquisitive baby.  I really like to watch people and even sometimes I watch the TV, like when mommy and daddy have the Olympics on.  I know people may say that is preposterous, but it's true.  I can see really well.  I take after my mommy and daddy because they like to people watch too.  I also think I take after my daddy because I like to be a part of people's conversations.  I will sit quietly a lot, but I also try to talk when they are talking.  It's like my daddy because he really likes to talk to people.  I am a really good girl though, and lots of people tell me it is so.  I'm just happy and not much bothers me...unless I am hungry or my teeth hurt, of course.

Mommy's New Job
Mommy and I go out to visit Nana and Papa a couple of days a week now.  Mommy had to take some time off of her job as a teacher to spend more time with me.   She was really sad that she had to take time off, but she is also feeling better that she gets to care for me and see me everyday.  She is also very grateful that her school allowed her to take a leave.  She thought it was very kind of them to do.  She really wants us to live in a nice house so she is going to work a little bit with Nana now.  She says that carrying me up and down three flights of stairs is too much, and don't even get her started on groceries and laundry...yikes.
Right now it's a little nuts because we do a lot of driving, and sometimes I want mommy to spend time with me instead of work (I'm not used to keeping myself busy, but I am learning!), but I like it because I can snooze the whole way!  Plus, my Papa keeps me busy during the day by playing silly games with me and he lets me listen to The Beatles and other interesting music.  I like to dance and move around to the music and everyone gets a big kick out of me.
There have been a lot of changes lately, so we are all just getting adjusted.  We are all so thankful to have all of our friends and family helping us and sending lots of love our way.  We are very lucky and I am learning how to be a good person by watching everyone around me.

Shriners
Tomorrow morning we go back to see the doctor at Shriners.  He is really nice and my mommy really likes him.  He even called her and talked to her on the phone for a while!  What doctor does that nowadays?!
He wants to see how I am doing and we will find out more about my treatment.  The doctors at the children's hospital said that they would like to delay treatment, but my mommy and daddy are confused and don't know what the best option for me is: treatment now like Shriners says, or waiting like Children's says?  That is a big decision...
I am excited for him to see me because I am so strong!  I hope he is impressed by me.  I don't want to toot my own horn or anything, but I am a pretty special baby...that's what everyone says...
I will write more when we here from Shriners.  Have a happy Sunday!

Here I am watching The Olympics with daddy...oops, I fell asleep