Adventures in a New Perspective...literally!

I'm really used to taking adventures in my stroller.  My mommy and I go for long walks by the big lake almost every week, and all three of us go for walks a couple of times a week.  I really love those walks.  I mostly snooze or look at my mommy making funny faces at me.
Today we went for a really long walk down to the lake and then we had a little picnic.  It was so beautiful!  Here are some pictures:

 See how happy I am!

This was our picnic back-drop

Now, I love going for walks in my stroller, but sometimes it is hard to see all that is happening around me.  Well, the other day something AMAZING happened!

Mommy and daddy decided to put me in this special thingamajig where I can just dangle and I get to look at everything around me.  It's like a whole new world out there!

They decided to put me in it because they said I was getting pretty demanding about always needing to be held, and not only that (because they love to hold me), but I had to be able to look over their shoulder or else I would get really crabby.  Hey, there's a lot to see out there!

They keep saying that my personality is really showing nowadays...

Anyway, my mommy and I took a big adventure to a wonderful place called Costco the other day and I got to ride in my special thingamajig. Boy, was there a lot to see there!  I didn't know which way to look first!  It was GREAT!!  Plus, I got a lot of attention!

 Check me out...

 Here I am for my "test run"

 Apparently, someone though it would be funny to take this picture of me

I can't wait for more adventures like this!

More on the Doctor Visit

As Maggie said, last Thursday we went to a Skeletal-Dysplasia clinic at Children's.  We met with the Genetics and Orthopedic teams regarding Maggie's progress.  Both sets of teams answered many of the questions we've been gathering about how the genetics testing worked and what exactly does this all mean.  They were very informative and I walked away with a better understanding of her diagnosis.  The main point that I learned is that OI is so varying and the diagnosis is on a very broad spectrum.  The types are basically just for reference and were mainly used at a time when genetics testing was not as sophisticated as it is today.  Two people can be diagnosed with the same type, yet have varying degrees of severity.  They told us exactly where her mutation is, which is unbelievable.  And I am no Geneticist, so I will spare you the fumbling explanation that I would give.  Basically, there was one slight switcheroo at one tiny point as she was developing and the result was that the quality of her bones was affected.  See, a very scientific explanation!
How do they know which type she has, you ask?  They explained that the people with OI who have a mutation at this same place usually exhibit characteristics of Type III or IV.  However, as I said before, those characteristics are just a reference point and don't necessarily mean that she will exhibit all of them or to what extent she may exhibit any one of them.  This makes us feel better just hearing that.
The  doctors all seemed very impressed with how well Maggie has healed and how well she is progressing.  They suggested that we hold off on treatment to see how she does in the next few months.  We were really joyful to hear this, but (yes, I'm sorry, there is usually a but that comes after news like this) from what I've learned, Shriners seems to be the leading hospital on OI care, so we are going to go back to them next week to see what they recommend.  When I spoke to the doctor from Shriners today he did reiterate that we really don't know if she has gone fracture-free over these past several weeks since they are usually not complete breaks, but slight fractures.  And since she can't talk yet we may be confusing what we think is fussy from teething for crying from actual pain from breaks.  Who knows, I guess.
It's just a little confusing knowing who to get treatment from and at which hospital Maggie is going to get the best treatment.  I mean, its very nerve wracking knowing that this decision will affect her physical well-being for the rest of her life.  And not just physically, but her health as well, as we do not know any long-term affects of this treatment since it's only been used for about the past 10-15 years.  There are no long-term studies on it as of yet. I guess we have a lot to think about...

Thank you for all of your thoughts and prayers, they really helped!!

Finally...some good news!

Hello again!
Today my mommy, daddy and I all went to a special clinic at the children's hospital.  There were a lot of other kids there and we met with a lot of doctors, so we were there for over 3 hours!  Mom and dad ran out of milk after about 2 hours, so they were very nervous that I would start getting fussy, but they made so many funny faces at me that I couldn't be sad.
Everyone kept telling me how cute I am and what a good baby I am.  I didn't really know what they were talking about because I was just being myself, of course.  I was polite and smiled at all the new people I met, and the doctors had a lot of fun "toys" for me to play with as they checked out my arms and legs.  They said I looked very strong and healthy, which I am!
I got an x-ray too so that the bone doctors could make sure my breaks are healing right.  I was a little concerned at first, but I was perfectly still for it.  The doctors showed mom and dad the pictures and everyone was so pleased!  Everything is healing perfectly.  The doctors also said that any bowing in my legs may just straighten out on its own since I am still growing.
The Orthopedic doctor told us that I don't need any early intervention since I am moving everything and obviously not in any pain, and the Genetics doctor said that we should wait to get any treatment since I am doing so great.   We are going back in November to see everyone again, and my mom and dad might meet another family who has a little boy with OI.
As for me, I am pretty tired after my busy day.  Mommy and daddy cuddled me extra and rocked me to sleep a little longer today because they were so thankful and happy.  I'm happy too, but I always new everything would be alright.
It's off to sleep for me, to have sweet dreams about bottles, funny faces, cuddles and nice, warm baths...

....goodnight

More nerves

This afternoon is our appointment with the clinic at Children's.  We will be meeting with the Genetics and Orthopedic teams, I assume, to talk about Maggie's future.  I am very apprehensive and anxious about it.  Last time we met with the Genetics team it was when they pretty much confirmed that she had OI, and not in the most sympathetic manner either...talk about a lack of bedside manner.

I woke up at 4 a.m. yesterday morning and the only culprit I could determine was this appointment.  I’m not even really sure what I am apprehensive about.  I guess it’s that they can finally “label” her with Type III or Type IV.  I am worried because the differences between these two are tremendous.  Type III sounds so much more severe, whereas IV seems so much less severe.  I know I shouldn’t worry about it so much because each person with OI is affected differently.  It’s just that having her labeled with a Type means that it is real.  Right now at least we can hope that it’s IV.  I can look up the characteristics and tell myself that it seems like she has IV.  If they tell us that it is III there is so much more to worry about.  Although we will always stay positive about her diagnosis, her having Type III will really just be another devastating piece of news. 

I guess I just would really just like some type of good news at this point.

Here I go again though, I shouldn’t worry about things I don’t know about or control.  We will find out soon enough…

Some other news is that the school board of the school district where I work approved my leave last night.  I am so thankful for their consideration.  So, what this means is that we have the next year to devote to Maggie and her care and treatment.  I’m thankful that I even have this option.  It will be a rough year with treatment, but she is already growing so much, I just can’t wait to see what she is like in a year’s time.  Along with that come many worries also though: once she begins to crawl and walk will she fracture more?  I’ve read that many children with OI fracture much more during this time.  I’ve been trying to do little exercises with her each day so that she strengthens her leg, arm and neck muscles, but I don’t know if it really makes a difference since OI affects the composition of her bones.  All of the exercise in the world might not help, but I’m not taking any chances.

It is sad that every time I think of something exciting that may happen in her life my next immediate thought is how she may get hurt from it.  But, I’m sure with time that will just be second nature and it won’t make me so sad.

I really don’t want this blog to be something that makes people sad when they read it.  I know right now it seems sad all the time, but I think that is because I am trying to work through all of these feelings.  Really, our days are filled with fun and smiling and cuddling.  It’s only when I am left to my own devices that my mind begins to wander.

Keep your fingers crossed…

Music Therapy..and other things

Maggie and I are back here in Michigan, soaking up the beauty once again and relaxing with the family.  

Sometimes things get so stressful that you just need to get away.  Unfortunately, sometimes the city reminds me of all of the bad things that have happened over the past few months.  It's sad, because I moved to Chicago almost 8 years ago, basically on a whim, and I always believed that it was "meant to be" because so many great and (forgive my cheesiness) magical things seemed to happen to me here: I moved to a "big city", something I always dreamed of, I grew so much as a person and had so many wonderful experiences that changed me for the good,  I met the most wonderful man ever, had a series of wonderful experiences professionally, met so many great people, got married and the best of them all, had Maggie.  But, unfortunately, all of the recent events have kind of tainted all that.  I know that I shouldn't think of it like that but, seriously, things continue to happen that just make me wonder...why? Why us? Why Maggie? Why? Why? Why?

I know, I'm supposed to be positive all of the time and never act like I don't get down, but the fact of the matter is that I do.  I get really sad sometimes.  Sometimes I even feel depressed.  But, luckily, I remember all of the good things and I go right back to being optimistic and happy.  If you do not have a child who is sick or has special needs, you will never know what this feels like.  I remember reading things like that when I was in school for my Special Ed degree and thinking I knew...but I really, really didn't.  I have to understand that it's okay to be sad and to feel things.  Sometimes I feel like in our society it isn't okay to be real and have real feelings and to show emotion.  We aren't robots, people.  

Now, don't get me wrong.  I have it great.  I have a wonderful family and I married into a wonderful family.  We have an unbelievable support system of friends and family to lean on.  Mike and I both have jobs and health insurance.  We know the questions to ask and we know people who can help us out.  We are so, so grateful for all of this because I can't even imagine what it would be like otherwise.  But there are a lot of people out there who are struggling.  So I have my moments of insanity, and then I am brought right back down to reality... 

Okay, so now that I'm done with my rant, I'll get onto something that has proven to be so therapeutic, not only throughout my life, but (I believe) for Maggie as well.

Mike and I love music, and we have so many wonderful memories stemming from music in some way. I grew up with music filling my house.  It is unexplainable, but certain songs take me back to certain times in my life and special memories: music filling the air on Sunday mornings with sunshine coming in the front window as I lay on the oval carpet to wake up in the warmth, listening to Oldies 104.3 in the garage or in dad's pick-up truck, spontaneous family sing-alongs to The Eagles' Witchy Woman at dinner.  I could go on and on.  Music can draw up feelings that I had at that time and memories that I didn't think I remembered.  I am so inspired by music, it is definitely the one constant in my life and the one thing that is guaranteed to lift my spirit and touch my soul.  I want Maggie to grow up like that too.  I definitely think she has gotten the 'music gene'.  She seems to calm more when there's music on and she likes to be sung to.  I will never forget listening to The Shins in the delivery room as we had Maggie.  Mike really wanted to put on Jason Mraz, but I love The Shins so much he kept it on for me.  So, Maggie was literally brought into this world with music.  Not to mention, she had to listen to my voice belting out 80's hits every morning while I drove to and from work!  I swear, I listened to The Shins Simple Song so many times in my last trimester that she can identify it now when I put it on! Sometimes we do put it on just to calm her.  

I started thinking about music this morning.  It is a rainy morning here in Pinckney, but looking out over the lake is so beautiful and calming.  She started to fuss so I put on music through the TV.  70's hits, of course, and she immediately stopped.  We looked out the big bay window, swayed to the music and I sang to her (living out my own karaoke dreams!).  The first song we heard was The Eagles Peaceful Easy Feeling.  I LOVE that song.  You may say I'm cheesy, but that's not the first time and it won't be the last.  Man, those guys can harmonize.  I admit here and now, I love The Eagles.  I have a sneaking suspicion that it's my dad's fault.  He is a very talented guitar player and he has a voice as well, although he'd never let you know.  He listened to all of those great bands as we were growing up and I still absolutely love them all, so much more than anything today or even from the past 30 years.  The music up until the 70's, and I'm talking even the 20's, 30's, 40's, etc., was so phenomenal.  Music will never be like that again.  So, I guess it's a bit of nostalgia that plays a part in why I love music.  We love singing to Maggie.  Instead of Rod Stewart's Maggie May we sing Maggie Shae.  Instead of Elton John's Bennie and The Jets we say, you guessed it, Maggie and The Jets.  Instead of Frankie Valli and The Four Seasons' Sherry Baby it's Maggie Baby.  Even the lyrics to Mike's favorite (he's going to kill me) The Macarena is changed to "Hey, Maggie Shae".

Oh music, I love you so.  You've been so good to me...music heals the soul and makes our days a little bit easier..and fun.

Here's Maggie's reaction to 70's Classic Rock: maxin' and relaxin' 

Maggie looking out the big bay window at Grandma & Grandpa's.  

The doctor's say laying on her side helps the back of her head from getting too flat, 

since she had to lay on her back a lot when she was recovering.
It looks to me like she inherited a love for nature :)

Swimming!

Hello!  It's me, Maggie Shae!
I'm so sorry that it's taken me so long to write again, but I am such a busy girl!  I have to eat (up to about 6 oz every few hours now!), and sleep (through the night!), and play, of course.  After all of that there's not much time left in the day...

Recently I discovered the joys of water!  My mom and dad say it is good for my bones and it gives me some exercise.  They weren't sure how I was going to like it, and they were a bit anxious (surprise, surprise!), but  I didn't mind a bit and I got in just fine.  I wore my new green sunhat and it was wonderful!  I just hung out and kicked my legs and sucked on my hand the whole time.  After a while I got hungry and I started to yell, but I can't wait to go back in again...maybe even later today!

Here's the picture daddy took of me swimming for the first time!

Happy days!

Happy Three Month Maggie Shae!

Hooray for me!  I'm 3 months old today!! 

As a present to my mom and dad I decided to break my own
record and I slept 8.5 hours last night!!  

Here I am with my good buddy, Elephant

Here are all of the things that I can do:

I LOVE to "talk" and I really like it when people talk to me

I am so happy all the time

I can put my hands together

I can stick my whole fist in my mouth, and practice this often

I giggle and make funny noises

I yell at my mom and dad when my mobile stops or I am bored

I try to hold my head up

Here are some of my favorite things:

My fingers, usually about 3-5 at a time

My wubbies, Monkey and Ducky (I'm more partial to Monkey though, don't tell Duck)

My vibrating chair (man, I can sleep in that thing)

My mobile

Going for walks

Going for car rides

I weigh 11pounds now and I am 22 inches long!

I'm really growing up!

Vacation!...And thoughts that come with it

We had a wonderful week-long vacation to Michigan to visit Grandma, Grandpa, Aunts, Uncle and cousins.  It was so relaxing to wake up to the lake each day and Maggie LOVED it!  We would just walk around in the fresh air and listen to the birds singing.  It was literally like a Disney movie with bunnies hopping about, butterflies fluttering by and birds "talking" in the bird bath.  I felt like I should stick my head out the window, Cinderella-style, and converse with them!  So idyllic.

Much different from Chicago and listening to horns honking, ambulance sirens, and traffic, traffic, traffic.  It definitely rejuvenated our souls.

Here I am on my 1st 4th of July!

Maggie’s cousins sure do love her!  They were so excited to see her and even practiced how to hold her.  They couldn’t wait to do it!  It was the cutest.  I can’t wait until they can all play together.

Here I am with my cousins!

Maggie survived the cousins and the handling by everyone, which is good because we still don’t know how fragile she is.  Which both gives me relief and scares me.  Of course, I want to believe that her breaks are all done.  But I know that is not realistic.  What will happen?  Will her breaks come in waves, like I’ve heard?  Will we get so used to how she is now, but then one day something will break and all of this will start all over again?  Do I have an unreal sense of her condition because she seems so strong at this point?  So many questions…

I look at her everyday and wonder when it will start, which is a really crappy way to live, especially when you have a new baby.  But, at the same time, I recognize each and every day how special she is and how grateful I am that she is doing so good, and I am grateful for what I have.  And I know that for the 1^st 6 weeks of her life I wasn’t this grateful.  That may come off sounding bad, but what I mean is that I do not take one thing for granted nowadays, and I know it is easy to take things for granted when your child is okay.  Although we only got about 5 weeks of it, knowing what it is like on both sides of the fence has put things into perspective for me.  Now, when I have to wake up at 2 to feed her I am just glad that she is here and can feed and doesn’t have underdeveloped lungs or ribs, like many other children with OI have.  I am glad she is just here.  I am grateful for a lot of things that may have escaped me before. 

From the Beginning...

So, I figured that I should start from the beginning for anyone new who may read this.  Mike and I have decided that we have to tell everyone "officially" now, and I'm hoping this will be a great way to communicate Maggie's progress.  It's not really a topic of conversation that you want to have repeatedly.

I have to admit, I was holding off doing this because I was really holding out hope that she had a deficiency of some sort, like me, and that it wasn't OI.
So, here it is, from the beginning....

My pregnancy had been very low-risk, but I did have some strange things happen starting at 31 weeks.  I passed out behind the wheel while driving to work and I totaled our car.  Both baby and I were fine, but they never found out exactly why I passed out.  Five days later I came down with flu-like symptoms and was readmitted into the hospital for dehydration.  After that things were good until I was induced at 40 weeks exactly because her heart had dipped a few times during my routine non-stress test.  Maggie Shae Ivy was born very healthy on April 12, 2012.  At 5 days old she was admitted back into the hospital for jaundice and she stayed overnight so she could get photo light therapy.  At that time, we thought this was the most traumatic thing to happen in her little life.

Over the next few weeks she thrived.  At her 2 week appointment she had gained so much weight, had grown so much, and seemed to be the picture of health so her doctor said she didn't need to see her until her 2 month well-baby check.

Looking back now though, there were a few things we noticed about her: The whites of her eyes were greyish and her right shin (tibia) was bowed and there was a dimple there.  Also, a few minutes after she was born her legs were spread as if she was doing the splits.  The nurses, doctors and both of us laughed because they had never seen that before.   We know now that all of these things point to OI: blue sclera, an Orthopedic told us dimpling on the skin of the tibia can be a sign of fracture in-utero, and also that the straightening of the limbs could be a sign of brief paralysis, perhaps due to her tibia having been broken.  However, this being our first child, we didn't know that these things were different from other newborns, and when we asked her Pediatrician she said everything was fine.

At 6 weeks we noticed that she had a different cry and she wasn't really moving her right arm.  She had slept 6 hours one night and the next day she was acting very odd, almost lathargic.  She threw up and this was very unlike her.  I e-mailed the Pediatrician to ask if this was normal (it was a Sunday), but then she started to act okay and I really didn't think too much of it until I noticed that she still wasn't moving her arm much on Monday either.  Her Ped had emailed back an said she was fine, but by Tuesday I was really scared.  I called the Ped and they got her in that day.  She said it might be a nerve issue that could clear up within a few days, and to give Maggie tylenol and do certain arm exercises with her.  She wanted me to follow-up with her on Thursday.

Over the next two days we could tell that there was definitely a difference between her two arms.  When I would move the left arm above the elbow she would wince and whine.  Mike and I decided that we would take her to the hospital on Thursday regardless of what the Ped said.  When I followed up with the Ped on Thursday her response made me a bit concerned.  She started to try to schedule specialist appointments for Maggie because she thought it was Erb's Palsey.  We decided to take Maggie to Children's Hospital to have her arm x-rayed.  We eventually brought her into the ER thinking she had a broken clavicle.

When she was brought in she was asleep and content.  Over the next several hours we found out that she had (what they originally told us) several broken bones.  We were shocked, confused and unbelievably sad.  What happened to her?  We were accused of abusing her and were interviewed by police officers, social workers, and Dept. of Children and Family Services.  Being a teacher, I was terrified because I was fearful of the DCFS process. We asked the doctors repeatedly if she had weak bones or if it could be some sort of disorder, but they told us no, that it was trauma.  It was horrible.
Things started to look up around 2 in the morning when the police officer interviewed us.  He was actually one of the first people to treat us kindly.  He told us it didn't look like abuse and we started to feel like someone was on our side.  In the early hours of the morning someone mentioned Osteogenesis Imperfecta, and at that moment we were glad that we were no longer being accused of harming our baby.

Maggie stayed in the hospital because of her broken femur.  She would wake up crying every 20 minutes because she would startle and she was in so much pain.  It didn't help that we had to share a room.  I felt so bad for the poor little boy and his mother next to us because Maggie screamed all throughout the night.

In the morning a Geneticist came in to talk to us about OI, and that is when this journey began.  Maggie was discharged and we took our baby home with two splints on her legs, bruises up and down her arms from IVs, and a prescription for Hydrocodone.  The next few days were very trying to say the least.  She was in a lot of pain and we had little instruction about how to help her.  Plus, we were new parents just trying to get used to having a newborn, and now we had one with broken bones.  We couldn't pick her up or hold her close.  She could no longer breast feed.   We were extremely worried.  It was no way to live.

She was on tylenol for the next 2-3 weeks but she improved.  Babies are so very resilient.  We had a great Orthopedic and each time she went she was improving.  She got her splints off and they were replaced with a full-body harness, which was much better for her mobility, but we could not give her a bath.  After a few weeks the harness was taken off and she started to move her leg again.

So here we are today.  Looking back now it seems like all of this happened so long ago, but it's only been about 6 weeks.  It's hard to believe.
Having gone through all of this makes us grateful for a lot that we took for granted before.
I'm one to believe that everything happens for a reason.  I guess sometimes you're just not sure what that reason is, but I believe that one day I will understand.

a song to make you feel good

Mike and I have decided that this is going to be our anthem.  

It's a Jason Mraz song and if you've never heard it you really should listen to it.  We are totally biased because we love him and have so many great memories from his concerts and his music in general, but when we got into the car to come to Michigan the other day we started listening to his new album and this song just really made sense to us.  I'm sure you'll agree.

Living in the Moment

If this life is one act

Why do we lay all these traps?

We put them right in our path

When we just wanna be free

I will not waste my days

Making up all kinds of ways

To worry about all the things

That will not happen to me

So I just let go of what I know I don't know

And I know I'll only do this by

Living in the moment

Living our life

Easy and breezy

With peace in my mind

With peace in my heart

Peace in my soul

Wherever I'm going, I'm already home

Living in the moment

I'm letting myself off the hook for things I've done

I let my past go past

And now I'm having more fun

I'm letting go of the thoughts

That do not make me strong

And I believe this way can be the same for everyone

And if I fall asleep

I know you'll be the one who'll always remind me

To live in the moment

To live my life

Easy and breezy

With peace in my mind

With peace in my heart

Got peace in my soul

Wherever I'm going, I'm already home

I can't walk through life facing backwards

I have tried

I tried more than once to just make sure

And I was denied the future I'd been searching for

But I spun around and hurt no more

By living in the moment

Living my life

Easy and breezy

With peace in my mind

With peace in my heart

Got peace in my soul

Wherever I'm going, I'm already home

I'm living in the moment

I'm living my life

Just taking it easy

With peace in my mind

Got peace in my heart

Got peace in my soul

Oh, wherever I'm going, I'm already home