Sunday, May 30, 2010

Trying to make the best of it...

So it has officially been one week - four to go.  Dylan is still not the happiest boy but he's doing o.k. 

Thursday, May 27, 2010

Sometimes life is very unfair....

It's just so unfair.  I keep saying it over and over.  I look at my precious little boy and just cry.  What did he do to deserve this  - ABSOLUTELY NOTHING.  WHY? WHY? WHY?  I just want to scream at the top of my lungs.  This adds one more thing to the list.  When he was admitted to the hospital the nurse filled an entire page of notes when I was going over his medical history.  I almost cried.  He didn't ask to be born with all of these problems, he is an innocent baby.  Or then I keep asking what did I do?  I am not a bad person.  I am trying very hard to make the best of the situation but it's really difficult. Dylan has been miserable, crying most of the day.  It's very sad.  It is so hard to even get him in a comfortable position, we've tried everything.  He seems to only be happy when he is sleeping.  It's just a big BUMMER!  Poor Dylan. :(

I am now 13 weeks along.  On Monday I went to have CVS(chorionic villis sampling) testing done.  It is like an amnio but instead of taking amniotic fluid they take a sample from the placenta to test it for anything and everything.  We met with a genetic counselor prior to the procedure and she told us that they will perform a micro array that will be able to test for hundreds of chromosomal deletions and rearrangements.  I knew that if I ever got pregnant again I would have this testing done.  I couldn't go through another pregnancy not knowing.  Now we wait.  It takes 2-3 weeks to get all of the results back.  It's funny but I have been so worried about Dylan that it's like I almost forgot that I was pregnant - I have pushed it to the back of my mind.  So seeing the baby on the ultrasound was good for me.  So far so good, the baby was measuring fine and everything looked o.k.  It has been hard for me to even be happy about this pregnancy.  I haven't even had a moment to touch my expanding belly and smile.  It's been a tough week/month/year and yes I am kind of depressed about everything and feeling sorry for myself, but I'll get through it - I always do. 

Sunday, May 23, 2010

Broken Leg

I am so sad to be writing this post.  On Friday night Dylan broke his leg.  We had gone out to visit my mom and he was showing off his standing skills holding onto the couch and he started to get a little wobbly and fall toward the left.  I was right behind him and caught him immediately, he never fell he just started to fall to the side.  He then started crying and he bent his left leg up towards his belly.  I held him for a while and thought that maybe he hurt his hip or pulled a muscle somewhere.  I gave him some Motrin and he fell asleep.  He was up throughout the night fussing, not really crying too much.  The next morning he was still not wanting to straighten his leg so I took him over to the pediatric urgent care and the doc thought that is was just a strain but took x-rays just to be sure.  We were shocked to see that the base of his femur (thigh) bone was broken all the way across.  The doc then had him admitted to the hospital so that the orthopedic surgeon could set the bone and cast it the next day.  So this afternoon the ortho finally came in and told us that by looking at Dylan's x-rays he diagnosed him as having osteogenis imperfecta or brittle bones.  He said his bones look like bones of a 65 year old!  He then said that he wants us to take him to the endocrinologist to see about supplements and medication that hopefully will help strenghten his bones.  He ended up placing him in a "spika" body cast.  He will need to stay in the cast for 5 weeks.   I totally broke down at the nurse's station and cried like an idiot because I am just so sad for all that we have worked on and all that he has accomplished and now this.  Now he will be immobilized for the next 5 weeks.  It's going to set him back so far.  My poor baby.  Why did this happen?  He has already been through so much in his short life, it's so unfair.  I pray that he will heal quickly and that he will be able to take medication that will make is bones strong.   I could go on and on writing about my feeling but I am mentally and physically exhausted.

Thursday, May 20, 2010

Our Strong Little Pickle

The pictures say it all:

With a little help from mommy...

almost got it....


He couldn't help but show off this new skill too.

Sunday, May 16, 2010

Toys are Becoming More Fun!!!

Dylan has made amazing strides this past month.  It is as if a little light went off in his head and now he is actively reaching and grasping for toys.   Now to be honest I used to think that he actively played with toys but looking back I think a lot of his playing was accidental not really purposeful.  I can't believe the change in him.  When two different toys are placed in front of him he is now making a choice as to which one he wants.  When he is playing he is becoming more verbal and babbling up a storm (no mama or dada yet but he has his own little language and we are very happy that he is just making noise).  He is trying so hard to sit up on his own, he's almost got it but his trunk control is still a little weak.  He is tolerating standing with his leg splints on for longer periods of time, and he is finally able to hold the crawling position for a few seconds without going down on his elbows.  He continues to roll and move all around.  When I put him to sleep in his crib I usually find him turned the other way and/or rolled over.  He is finally getting some hair on the top of his head, and it's curly just like his sister's.  He is eating like a little piggy, even tolerating some pancakes and french toast this morning (it was very exciting to watch him move the food around in his mouth and start to chew).  He doesn't want to drink from his bottle anymore and only wants his cup - fine with me, it took forever to break Hailey of the bottle.  He is also trying more and more to hold his own cup and drink from it himself.  We are so proud of our little pickle.

Love the drool - he's concentrating.

Wednesday, May 12, 2010

Mother's Day Vacation

We had a wonderful vacation at the lake.  We spent our time swimming, laying in the sun, floating, boating and just hanging out - it was great.  The kids all had a great time, Hailey was very sad to have to come home.  Here are a few pictures from our trip:
My mom and I.

Two cool dudes rockin' the hats and shades!  Dyl with uncle Chad.

Dylan and Grandma.
Hailey and Emma

All the kiddos.

This is where Huckleberry was the entire time, he never got out of the water until we made him go to bed at night.

Wednesday, May 5, 2010

We are leaving tomorrow to go to the lake for Mother's Day.  It is our annual trip that I have been taking with my family since I was a kid.  I want to wish all of my fellow blogger moms out there a very happy Mother's Day!  I will post the pictures when we get back next week.

I do have to add one video of Dylan's new trick.  He just learned how to lift his arms up when I say "pick me up."  It is so cute, I am so proud of my little man.  The first time my sister saw him do this last week she was in tears.  She was so excited she couldn't hold back, then we all started to cry.  We all cherish every milestone that he accomplishes no matter how big or small. 

Monday, May 3, 2010

The new picture of Dylan was taken yesterday by our good friend Donald Levine.  He is an amazing photographer - thanks so much Donald!  I think Dylan looks absolutely precious.  Donald captured one of the best pictures I have ever seen of our little angel when we were just hanging out in the backyard.