The End of the Story

  So the next day we go back over the hospital to see Dr. Bober. After we have registered ,we were sitting in the waiting area. Who should walk down the hall? Dr. Bober and Dr. Scott. It is very rare to see Dr. Scott.They tell us they have been up all night reading Andrea's x-rays. Dr. Scott leaves and Dr. Bober takes us back.

 They take us  to what looks like a conference room. Now at this point in time I am thinking that this is just like the TLC shows we see on TV. The room looks exactly like the one you see on Kennedy's story. An oval table with lots of chairs all around it. There are tons of shelves that hold lots of toys for the children to play with while the parents are talking. There is a computer where they can pull up your child's x-rays to show you exactly what they are talking about. 

They take a family history.They take a lot of measurements. Head, height, height sitting on the ground,arm lengths,long bone lengths. There are many measurements. They look at everything. 

At this point they tell us they know for a fact that Andrea does not have achondroplasia. They know for a fact she does not have hypocondroplasia. They also know for a fact that she does not have Juenes Syndrome. Which the Pittsburgh Children's genetics thought. At this time I felt like she doesn't have all these things so what does she have?

They did know that she did have some form of rare dwarfism. They also knew that she had some achon characteristics but not all. Andrea has achon hands,head,feet,and facial characteristics. If you didn't know any better just a quick glance of her face you would think she was achon. 

So what could it be? Achrodystosis . It is extremely rare. Dr. Scott has only seen one other case in his career. 

The down side to this that it is rare there is not a lot of infromation out there.

Now that we have a diagnosis things seem to be calmer around here. We were suppose to go and see Dr. Bober 6 months after Andrea's appointment but we never made another appointment. We are taking the less is more approach. We see our regular pediatrician for check-ups. We have Adrea in speech and occupational therapy. We just aren't seeing anyone else at this time. Delaware is just so far away to be taking a trip every 6 months. We just can't afford to go there. There really is no one around us that has a specialty in dwarfism. If there is something that comes up we will certainly be on top of it. Until then we are just living our lives just the way we were before.

Andrea's story part 3

 So we move to a very small town in Northwestern Pennsylvania. We have 1 pediatric practice in the town that we live in. It wasn't very hard for us to find a doctor. The only problem is that the Dr that we did have left the practice and moved away. Bringing in another doctor in to replace her.

The Dr before the new one sent Andrea to Pittsburgh Children's hospital. They thought that Andrea had a form of dwarfism called Juene's Syndrome.  I run home to do a Google search. I thought that they completely lost their minds. Mind you at this time Andrea is 3 and they did no x-rays to confirm their diagnosis. They just had a hunch. Let me just say that I was not impressed.

 At Andrea's 4 year old check up I brought up my opinions to her new pediatrician. I told him I wasn't driving anywhere until they could send us to someone that knew what they were talking about. At this time I thought our best optionof getting  a diagnosis was taking Andrea all the way to Delaware to see Dr. Bober. If he and his team couldn't figure it out chances were no one was going to be able to. Andrea's ped. agreed with us. So I came home and made an appointment for her. Our Ped. appointment was in January and we couldn't get in to see Dr. Bober until the end of August.

August came and a girlfriend of mine, Andrea,and I packed up the car for an eight hour drive to see Dr. Bober and the team. Along with Dr. McKenzie. They could not schedule our appointments on the same day therefore, we 2 nights at the Ronald McDonald house. Which I have to say is extremely awesome!

This picture is from Dr. McKenzie's office. We waited a very long time to see him. He thought Andrea had Hypo. He would soon be surprised.










This is a petting zoo. We had a great time because it was family night so admission was only A dollar.

We also went to the Rose Garden's


The next day would be our appointment with Dr. Bober where we were  hoping to get some much needed answers. ........

Andrea's story Part 2

    Let see where did we leave off. Oh yes my mom passing away. Well I went home to make arrangements for my mom. I then rode in the back of my Uncle's semi truck to the Toledo,Ohio because Bill couldn't stay with me the whole time. He had to come home and go back to work. I remember my Uncle dropping Mike and I off at a truck stop to meet Bill. From there we went to the hospital to pick up Andrea. I remember being so tired from the ride , then going to the hospital and loading up the car with the things that Andrea had accumulated during her 13 week stay.  

We get this beautiful little thing home. All 4 pounds 5 ounces of her. We start to settle in and she has this horrible bout with colic. It so terrible! The only person  she would fall asleep for was Bill. For some reason as soon as she laid on his chest she would be out like a light.

 At this time we were seeing a pulmonologist for Andrea because of her lung disease at birth. Andrea was always so tiny but had a huge head. When I say huge I don't mean like an achon head. Her head was very long. She had a sever frontal bossing. Her tissue was extremely soft and from being positioned side to side on her head caused it to shape like that. This is one of the side effects from being so premature.

   At our 13 month pulmonology appointment  they notice that Andrea isn't quite growing like she should. Her hand are extremely tiny. The pulmonoligist suggests that we take Andrea to see a geneticist. So, I get Andrea in to see this doctor which took me forever. That is when the doctor brings up Andrea has a form of dwarfsim. He was thinking that she had either Achondroplasia or Hypochondrasplasia.. He then suggested that Andrea have a genetic blood test to check for both.  Andrea had the test done and she tested negative for both kinds of dwarfism. They did say that the gene in the blood test only showed up 70% of the time and that it was still a possibility that she could have Hypo. So, we then have a full skeletal x-ray done and had it sent to Cedars Sini to be read by the dwarfism clinic there. It took  a very long time for them to get back to us and when we did receive the report there was nothing in the report. They couldn't tell what she kind of short stature she had.

 In the meantime due to our job situation we had to make a move to a different location.

 Now it was time to find a whole new set of doctors...........

Andrea's Story... Part 1

Because it is dwarfism awareness month I thought I would join the group with Andrea's story.

When I was pregnant with Andrea I had high blood pressure. So they put me on a medicine called Labatol. At about 19 weeks they noticed that the baby wasn't growing and her heart rate would dip under the line. So I was put on bed rest.With ultrasounds and stress tests 2 times a week.

At about 25 weeks they noticed that Andrea had quit growing and that her placenta was not functioning for her.At this time they thought that she could survive in utero for possibly another 2 weeks.At this time I was given the 2 steroid shots to help Andrea's lungs mature faster.

At 26 weeks I went in for the regular (well regular to me) stress test and ultra sounds and they discovered Andrea's amniotic fluid was low and it was time to take her.Well because I had eaten that morning I had to wait all day in the surgery prep area for my C-section. So at 4:44 pm on January 26th Andrea was delivered. Weighing in at 1 pound 10 ounces and 13 inches long.







Andrea had sever lung issues. On February 7th we got the dreaded phone call that no parent wants to get.Andrea was suffering and no treatment was working. There was only 1 more thing that they could try and that was steroids. They called to ask permissoin to give it to her. If we don't give them to her then she would die, if we do give it to her there is all the side effects that could possibly occur. Blindness, cerebral palsy,and possibly death. I was like, "Just give her the meds!" I don't care if she has these things just give her the medicine.It took many weeks but she made a great turn around.

I finally got to hold my baby for the first time, 5 weeks and 5 days, after she was born.I was so happy and proud of her. She had gone through so much in her short tiny life. I was so thankful that she was a fighter.



Andrea would then have to stay in the hospital until April to gain weight,regulate her body temperature, and learn how to suck from a nipple.




One week before I was to bring home my baby daughter, my mom passed away suddenly from a brain aneurysm.She was 42 years old.She was so excited that I was having a baby and that it was going to be a girl.So I left Andrea in the hospital to come home and help arrange things for my mom.It was such a tragic time for me.


To be continued....... Tune in to find out when and how we knew Andrea was a LP

New Hair Cut and Jordache pants

I was going to upload a video of Andrea from dance class but You Tube is under going maintenance. So maybe tomorrow I will get a chance to post it. So in the mean time here are a few pictures of me and my new haircut and Andrea and her Jordache pants that I posted about awhile back.

Our New dancer

Andrea started tap and ballet class on Monday. I think we have a ballerina on out hands. She did really well in the tap class also. She is growing up so fast. Right now I am just trying to treasure these moments with her. She loves school. She even wants to go on the weekends. Waking bright and early to get ready. Therefore, waking mommy up. Oh man I just want to sleep in on those days. Hopefully she will realize soon that there is no school on those days. On Friday we will be starting Girl Scouts. Andrea will be a Daisy this year. She is soooo looking forward to Girl Scouts because Mike goes to Boy Scouts all of the time. I know she has been feeling left out. Andrea has turned into such a girly girl. It is so funny. She even sat for an hour to let me curl her hair piece by piece without complaining. I have always wanted a girly girl and God gave me exactly what I asked for!

O.k. I am still trying to figure out Windows Live Wire. I am trying to get it to automatically post from there to here. So I published there and cut and pasted it here. Here are some pictures that I wanted to post from when Mike's Dad surprised him at Camp. Hope that all of you enjoy!! :)

Blogging trouble

Just wondering if anyone is experiencing Blogging difficulty? I been trying to post some pictures and the picture window to download is not popping out. I have allowed the page to come through the pop- up blocker.
I am also having trouble commenting on blogs. I have to open the comment section up in a seperate window and comment that way. If any of you computer savvy techs out there know how to fix my problem please let me know.
Thanks,

Mike's Dad Surprises Him

Many of you know that my ex-husband has been in Iraq. He has been there since October. Well he was able to come home this week. Mike was away in Wilderness Quest. Which is a program that the school district takes all of the 6th graders on the middle on nowhere in cabins to teach them all kind sort of neat things. Hunter Safety, Water safety, Boat safety, and the list goes on and on. So to make the long story short. We surprised Mike at camp tonight at dinner time.
Here is a short video of what happened.

Fair Time

Today I took Andrea to the fair. Mike wanted to go camping for the weekend with some of his friends. Andrea was so excited to ride all of the rides and see all of the animals. I was amazed that there was no height limitations set up on most of the kiddy rides. Which I was thankful for. I was preparing myself for the worst. But, as it turned out Andrea got to ride everything that she wanted to.

I think I have a dare devil on my hands. Andrea wanted to ride all of the adult rides. Since I didn't purchase a pass for me to ride rides we stuck with the smaller ones. She loved the kiddy roller coaster. I think when she is older she will be dragging me to the adult ones. I can hardly wait. A girl that loves to ride like her mom. Mike is not a kid that likes those kind of rides. So I am glad that at least one of my kids likes them.

Here are some pictures from our day at the fair.

Waiting to ride the roller coaster






She looks like she is really driving it!Petting a calf


A friend of ours had a horse they were showing in the fair. Andrea loved sitting on her.

Just wanted to take some time out to remember 9-11. All the men and women that lost their lives today. Also , to thank all of the safety personal that risk their lives everyday to save people.
Thank you, thank you, thank you!

We hope everyone has a great Labor day. We are having a hot dog roast with friends if the rain holds out. I have made lots of food.
Please keep Mike's dad Matt in your prayers this week. He is on his way home from Iraq. Arriving in the states sometime around Thursday.
Thanks,

The 80's Are Back!

Well there is officially only four more days until school starts. The shopping is mostly done and what the kids don't have now they will have to wait until after the first day.Has anyone else noticed that the cost of back to school clothes has increased every year. Maybe it is not so much that I noticed before but now that I have a Middle School-er in my house now it seems that the cost of everything has gone up. It could be that the cheap Walmart items that were good before are no longer acceptable. Now he wants the name brand of everything. We have had to make compromises. No skulls on t-shirts. He will not be looking like a hoodlum.
I don't quite remember this happening to me when I was in school. Maybe it was because I lived in a very small town and you had to drive 1.5 hours away just to get to a mall. The closest store there was was Walmart.

I do remember having to have a pair of Jordache pants with the bow and zipper on the back of the leg. Do you remember those? Well ladies and gents.They are making a come back! As a matter of fact I found Andrea a pair. They are so cute!As soon as she wears them I will make sure that I post a picture of them.
I so remember those jeans not to mention the peg fold,stirrup pants,slouch socks,and my favorite leg warmers.
What are some of the favorite styles that are coming back in style are you going to dig in your closet to find?

Ti Chi and Sloths

Back and Reconnected

Well after being disconnected from all of the technology I have to say that being away really sucks. I could live without cable and maybe even the telephone. But, take away the computer and internet I have gone completely crazy! This is my lifeline. IT is the way that I stay connected with my friends and family.
I am so happy that we have our service back. Some great things did get accomplished.

1. All of the laundry was done.
2. The house was cleaned and de-cluttered.
3. I lost 6 pounds because my behind wasn't planted in one spot.
4. The kids and I had some great fun at the pool. ( Which we are going to continue to do)
5. We visited the library checked out movies and books for free. I think I read 2 books the other day.
6. Lastly, Bill is much happier because I have been doing all of the chores he hasn't had to do as many. ( I still refuse to take out the trash!)

All in all it hasn't been all that terrible. Except for the times when the kids go to bed and the house is completley quiet. That is the time when I don't quite know what to do with myself. I am so glad to be back!

He's off!

Today was the day that I had to drop Mike off for wrestling camp. Let me just say this now.... I am toatlally freaking out! There doesn't seem to be any chaperone's to make sure they get from place to place on the college campus. First of all. They put Mike on a floor with a bunch of college guys. Hoping to move him down a floor with kids more his age later on this evening. He is suppose to move himself eeek! We got the map and we walked him over to the dining hall for dinner. By then he had ran into 2 Middle school kids from our town. Thank God someone he knows! At that point he really wanted me to leave and being a good mom I did. I sooooo wanted to stick around to make sure that everything went smooth and that he made it to the next location safely. Bill pretty much dragged me out of there. By the time we got home there was a message on my answering machine," Mom, mom are you there?I have my key stuck in the door and I can't get it out. Can someone help me?" So I promptly call him back but he doesn't answer! OMG!!!!
I am happy to report that I haven't cried nor did I cry when I left him there.
Oh it is going to be a long couple of days! Please pray for me!!

Their Courage

Their courage deems utmost respect Their mission clear, our way protect It’s sure to each what they must do No give or take, keep freedom true With the grand old flag, they'll unite Whenever they must, march to fight A life we know counts hard on them Without their ranks, hellish problem If our Armed Forces ceased to be How long could we survive as free Let’s well realize the truthful score We need our troops just like before Boils down to this, words to engrave Land of The Free, Due to The Brave God Bless each one for being there Their loved ones too, unending care Hope born from love touches the will Do back them strong, means to fulfill Americans – Who Serve To Give One Nation – Under God We Live ©2005Roger J. Robicheau

Camping Trip

Here are a few pictures from our camping trip from over the weekend. We all had a good time. Mike even caught a fish,gutted,and, cooked it himself. Can we say :puke! Andrea got a little sun burned on her face. Poor kid. Enjoy the photos!.





The campground that we stay out fosters 2 alpaca's during the summer time. Here are the 2 for this summer. Check out Hog Heaven. Which adopts unusual animals.

Just wanted to say Happy Father's day honey. You are such an awesome dad! Not only to our child but to mine as well. You are such a great man . You make me fall in love with you all over again every day.

Ok enough of the mushy stuff you still have dishes to do and laundry to put away. No rest for the weary. LOL

Summer is here!

There really isn't anything new to report. We have been busy with just everyday things. Mike has his first of two wrestling summer camps this week. This one is being run by the wrestling team that he is on. Just a day camp. It starts on Wednesday and goes till Saturday. The second one is in July and he will be going to a University near our home. It is an overnight camp and he will be there alone. Well I mean without a parent. It is the first time that Mike has tried something like this. I am nervous while he is excited. It is a week long camp. For the price he better have fun but learn something as well.

Andrea has started summer school today. It is only 2 hours 3 days out of the month. She really loves going. To see all her friends. I have a social butterfly on my hands. That is all I hear about is her friends.

We have Mike's last Cub Scout event next week. It is a weekend camp out at a campground near our house. I am one of the 2 moms that are planning it. So I will be busy all next week.
That is about all. Here are some pictures of my brother Steven's graduation.


The whole class. All 64 of them.

Summer Photo Shoot.

Why is it that when you want to take pictures of your kids that one of them has to always be trouble?Mike just didn't want to help me out. Mom do we have to? Yes you do I shout at him. Come on just give me some good shots and you can be done with it. The sooner you cooperate the sooner we can be done. Then he would give me the worst smile ever. The I'm constipated smile. I mean you are not pushing here just smile and say cheese. It didn't go as well as I had hoped but here is the fruits of my hard labor.