The Giant Teddy Bear

Yesterday my little lady and I set the alarm clock for a ridiculous hour and set off for the hospital before the sun was even thinking about coming up.  Right before the swallowing fiasco and the feeding tube, she fell at school.  The new classroom didn't have the aide with her like they were supposed to and she was running and she fell...right on her face.  The teacher called me and told me that she fell and she was fine.  She then mentioned that she was bleeding a little.  So I went to the school thinking that I was going to kiss some boo boos.  What I found was that she had broken her front two teeth and continued to bleed from her nose and from her mouth.  So needless to say, we rushed to the ER.  After checking her out, they felt that she could wait to see the hospital dentist.  So we made an appointment to have them repaired...but then before the surgery appointment, she had the trauma of losing the ability to swallow and we had to cancel the appointment.  

We rescheduled her surgery finally for yesterday...at 5:30 am!

Hailey has all of her dentist stuff done at the hospital under sedation.  Technically she can get her teeth cleaned in the office (my mother in law is a dental hygienist) but she won't let anyone near her to fill a cavity...so the hospital it is...and what a wonderful hospital it is!  

We are so in love with this place.  I know that it is not necessarily a good sign that all of the nurses and doctors and receptionists and even the gift store lady know her name and recognize all of us...but when they do things like they did for her yesterday we realize how we don't appreciate them enough.

The child life specialist brought Hailey a movie on a little dvd player while we were registering her...then brought her a giant (and I do mean giant) bear and put it on her hospital bed so that it was there when she got into the room.  Just these small things make her so happy and make her so comfortable...and when she is comfortable, this mama bear is happy!

It is horrible that she has to go but wonderful that the hospital staff makes it so comfortable for her to be there.

This was the first appointment that I sat in the waiting room by myself while she had surgery.  It was pretty scary.  It was so early and my mom was watching the little one and my hubby had to go to school and I just didn't think that it was going to be a big deal...but it was.  I was scared being there alone.

And then I got some bad news.  The dentist came out and let me know that he could repair the teeth on the surface but they needed a specialist to do the root canals because the injury caused so much nerve damage.  Not a good thing.  It took me until 4:30 pm yesterday to find a specialist who would do it in the hospital and take her medi cal and insurance but I found one...so back we go to the same place to do the same procedure in a month or so.

For now though, she has two beautiful front teeth that she thinks are pretty neat...and a giant bear that is sleeping with her next to her giant dora right now.  As long as she is a happy girl, I am a happy mama.

For the 5 P Minus Society's Newsletter

I wrote this for the newsletter which came out today...

She was born 11 years ago.  Hailey Reyann.  Eleven years ago, we walked into the hospital in Sacramento full of hopes and dreams for our little girl.  We were so excited to have her and her big brother couldn’t wait to hold her!  She came into the world small, not breathing, with a little tiny head and moles all over her ears.  She was blue.  The nurses were yelling at my sister to turn the video camera off.  We didn't really understand the words coming out of the mouths of the doctors and nurses.  I specifically remember thinking that I could see their mouths move but they weren’t saying anything...microcephaly...What in the world is that??? They said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on.  The next few days are a blur of feelings and crying and worrying and measuring other people's heads.  Yes that’s right, measuring other people’s heads!  You see the geneticist informed us that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about.  He said that he would see us all in three months to see how she did.  So, we walked around for three months measuring every family member's head...charted them and brought it in to the geneticists office at that three month appointment.  The appointment went well.  Our little girl was growing steadily, if not quickly.  She was developing, if not quite to the normal standards...etc etc etc.  Her dad, big brother and I packed up our things from the geneticist office, with our little girl given a clean bill of health and started out the door.  But before we could get out the door, we were stopped when the doctor asked "HOW DOES SHE CRY?"  I turned and said, "like a kitten, everyone says so".  Shockingly, the geneticist says, "SIT BACK DOWN PLEASE" and began explaining about a "disorder" where the babies "cry like kittens".  I really did think, “You are kidding me” but I couldn't make anything come out of my mouth....Besides sobs.  And there it is, our little girl was tested and found to have Cri du Chat Syndrome...

As I sit here now and think about it 11 years later, I still sob thinking back to that moment.  It is the moment that my life changed, that my family's life changed, that my son's life changed, that my marriage changed, that I changed.  I had to become smarter in order to navigate the strange new world and learn this new language.  I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else.  I had to protect myself, my daughter and my son...It all came down to change.

The best laid plans...you can usually count on those not working out.

Just like when we planned to have a perfect little baby.  We planned to have a perfect little girl who loved ballet and girl scouts.  She would get married to a very handsome young man after she finished up her college life at Yale and became a brilliant lawyer.  Losing those plans, those dreams for her were some of the hardest parts in this journey.

After the shock wore off and we were able to do some research, we realized that a lot of what the geneticists and doctors had told us were not absolute.  They told us that she would never walk, that she would never speak.  We even had one doctor suggest that we give her up!  Once we started learning, we realized that early intervention was a miracle for children with cri du chat.  We got her started in physical therapy, warm water therapy, occupational therapy, speech therapy, feeding therapy, etc as soon as we could.

First she began to roll over and then to scoot and then a little crawling and finally walking.  She was able to pick things up and put things into containers.  Picking up her first cheerio was one of those moments that is burned into my memory!  All of those little milestones that parents don’t really think about were huge successes for her.

Now at 11 years old, Hailey is a very happy and well adjusted fifth grader.  She walks and runs and hops and even tries to skip.  She dances and loves music.  She is still learning things every day and we are so proud of her.  Hailey is learning how to speak now and has had hearing aides for about a year.  She loves babies and barbies.  She loves swimming, boating and most of all rollercoastering!  She has no fear and has been going on rollercoasters since she was tall enough!

She will never become a lawyer or go to Yale.  She will never meet a handsome prince and get married in a white gown.  She will never do many things that we planned for her in our dreams while I was pregnant.  But when you think about it, does any child ever fit into their parent’s dreams?  I’m sure that my parents dreamed of me going to Yale and getting married in a white gown to a prince and becoming a lawyer and I did none of that! 

So we are just lucky to have her in our lives.  We are lucky to feel her love every day.  And I feel especially lucky that although she doesn’t speak very much, she can say ‘Mommy’ clear as day!

Rollerskating

I love when we find something that our entire family loves to do.  Last year, the 4 year old and the 15 year old had their birthday party at the skating rink.  I was so nervous about how Hailey was going to do that I had her behavioral assistant come to the party with us.  Boy was I surprised.  I guess that the fact that she had to focus so hard to stay up on her feet made it impossible to do anything else.  So negative social behaviors were non existent that day!

We have gone just one or two times since then and every time I think, why don't we do this more often?  She absolutely loves it.  Yesterday we were invited to a birthday party (Happy 8th Birthday S!) at the skating rink and once again Hailey loved it.  And once again, I pondered why we don't go often.

She smiles so much and laughs.  On the carpet at the rink, she can pretty much stay up on her feet all on her own.  This is always so amazing to me.  I mean 11 years ago, the doctors were sure she would never walk and here she is SKATING!  Once we get onto the rink, the floor is a bit more slick so I have a system of holding her up.  I hold my arm under her armpit and then hold her hand with my hand and basically it is like a moving crutch. The rinks in our area allow me to walk on the rink in my tennis shoes so that I can help her.  It is amazing.  She dances to the music and laughs.

I think that one of the best parts is that all of the other kids are so busy falling on their butts too that no one has time or the energy to look funny at Hailey.  It is the one social setting that we never get the weird looks from the little kids.  They are just impressed that she is on her feet while they are on their butts!  It is also a place where I get to smile continuously because she is having so much fun.  Other adults stop her and tell her how great she is doing.

If you haven't had the chance to take your children skating, I highly recommend it.  I worked there when I was in high school and for a couple of years afterwards.  I met my son's father there and basically grew up there.  Maybe that is why I have such a happy feeling there.  But all in all, it is amazing to just see her do something that no one every believed she would do!

And the "why don't we do this more often" question...well I also always forget that I can barely lift my arms up the next day from holding her up on the rink for 2 hours straight!!  I guess there needs to be months in between so that my arms can heal!

I hope everyone has a great Sunday morning!  And Happy Super Bowl!

Can we get some PEACE??

It is looking like we may be on the brink of peace with a splash of tranquility!  Go ahead, read it again.  Yes, you did read that correctly.  Miss "glass half full" has a positive attitude.

 

Reason Number 1:

Hailey started a new school last week.  We fought a long hard battle to get her there and we did it!  It wasn't easy and in the end it was hiring an attorney that really did the trick.  Hailey doesn't test well and she doesn't assess well.  On paper, it looks as though she is much more delayed than she actually is...so much so that they really didn't think that she would fit into this new school...but I knew she could do it.

And so I fought...and so we won!

After five days at the new school, she is happier and better adjusted than she has been in so long.  We have never felt like her placement has been good for her but there were never any other options.  I have literally been fighting some sort of school district battle for over five years.  But not anymore.  One of the best parts is that she can stay until she is 22!  

I am so excited...have I said that already??

Reason Number 2:

Hailey is drooling again.  I never thought I'd be excited for drool...but I am!  This means that the botox is wearing off and we will finally be able to see if she will regain some of her swallowing skills.  The hope has always been that once the botox was gone the swallowing would return and we could eventually lose the g tube. And it is looking like we will be able to find out soon!  We have a new swallow study scheduled for the beginning of March and until then, she has actually started to eat and swallow baby food and applesauce textures.  All in all the swallowing is much better than we were expecting at this time.

Reason Number 3:

We found a respite worker!  She is wonderful.  We had to move towards agency respite because they cut off family respite in September.  This meant that for the first time, I would have to hire a stranger.  Hailey can be very difficult at times and I was nervous but our new girl is awesome!  She can't do anything with the feeding tube due to the respite rules but that is ok.  Tim and I went on a date night last night and had an amazing dinner and movie while she sat with the kids...and the kids were already asleep so they never even knew we were gone!

Reason Number 4:

I joined the PTO at Hailey's new school.  I have been struggling with finding other women and moms to connect with.  The fact is that I live in a different world then most people out there and I just have trouble connecting.  At this new school, all of the children are special needs so I can connect with them on so many levels!  I also am very passionate about event planning and this gives me the opportunity to use some of my very out of practice skills!

So you see, it is like we are on the brink of having it all!  And by having it all, I mean that I'll be able to go to the bathroom on my own once and awhile while Hailey is in school, Hailey may eat by mouth again, Hubby and I may be able to reconnect again and I may actually find some friends!