Growing Up

Wow, it is hard to believe that Madison just celebrated her 5th birthday. Madison is becoming a very independent little girl. She has accomplished so much in the last 5 years. She is now attending Pre-K classes all day and seems to really love school. She still has to wear her orthodics but she is walking much better now without them. She has learned several more signs in the last year. Shrek, Tinkerbell, Toy Story movies and Signing Time are her favorite things to watch on DVD.

Madison became an Aunt last December; she loves her little nephew. It is so precious when she gives him kiss on the top of his little head; like she is such a big girl now. At times, Madison wants to hold her nephew but only for a second or two.

She can rearrange her bedroom in record time now. The other day, she was shoving her toddler bed around her room and emptying every shelf and drawer she could reach. I wasn't very happy but deep down inside I was happy because she had to think out the process of acheiving her goal.

Her dog, Shadow, is her first interest every morning. She has to greet him and give him a big hug; sometimes he even gets a kiss.

From Blocks to Balls

When Madison started the 3-year old program at the local grade school she would gather up all her blocks and make them sit in a row and she would read them a book. At times, her students would misbehave. It was so funny watching her shake her cute little stubby fingers and scolding them.
She has now advanced to balls in various sizes from an exercise ball to a tiny bouncy ball. Her new students will attempt to escape at times but she is too quick for them.

Disability Benefits Step 1 Social Security Administration

Hopefully, this blog will help new parents of children with Down Syndrome. As soon as you receive your child's Social Security Card you need to apply for Social Security Income (Disability Benefits) for your child. The benefits are based upon the family income up to a certain amount; at the moment I do not recall the amount. I just remember we made just about $1000 too much. Your child will be egible because of the DS diagnosis but family is the deciding factor. You will need documents to prove your child has DS. I had copies of all the hospital records, chromosome test results, letters from doctors, etc. The more info provided the better; if your income exceeds the limit there are several resources/programs in the State of Oklahoma that will need these same documents along with a letter of denial from SSA. Please file for these benefits; your child may healthy now but you never know what the future holds.

I applied on-line then had an interview over the phone because I needed a letter of denial for other programs we needed to apply for.

Another visit to ER leads to hospital stay, again.

July 20, 2010:
We just had our third doctors appointment in a week trying to get Madison's respiratory issues under control. Our last visit on Friday, the 16th the doctor prescribed a steroid to administer over the weekend and rescheduled a visit on Tuesday the 20th. She got up that morning acting like she was real sleepy. I had to gather her up and leave. I should have known something was wrong because she was not very responsive. Still real clingy when we got to the doctors office. As soon as we stepped into the exam room the doctor couldn't believe she had gotten worse. Her oxygen level was at 79. Way too low. Nurses started her on a breathing treatments and oxygen.

She was rushed by ambulance to the ER so she could be monitored closer. Poor baby had to have blood work while there. I always hate it when they try to get blood work; they always have a hard time drawing blood from her. Chest x-rays revealed she has pneumonia. So now, we have to wait for a hospital room.

July 21, 2010:
Madison is much more responsive and has been weaned off the oxygen. She has gone all day without the oxygen. However, her oxygen level changes from time to time. Also, getting a little more active but her voice keeps coming & going. Grandma Lorene came to visit and sat with Madison while I went to the cafeteria. Madison was watching one of her DVD's and the credits came on while I was out. She kept trying to tell Grandma that credits are not worthy of being watched. So we need to teach Grandma how to operate the DVD player.
Our visitors have perfect timing. Sissy (Steph) came by with a new baby doll and some bubbles. Madison and her sister started blowing bubbles. Remember, the only time you can only play with bubbles in bed is when you are in the hospital.

July 22, 2010:
Hooray!! We get to go home. Madison is doing so much better she is coming home with 3 meds and breathing treatments every 6 hours. The hospital staff were very professional and were also very friendly. I know OSU Medical Center isn't everybodys choice but I haven't had any problems with them. The pediatric ward is rather small but they took great care of Madison.

SoonerStart Program

I never heard of SoonerStart until Madison was born. It is an Early Intervention Program thru Oklahoma Department of Education. They came to our home when Madison was just a month old to evaluate her needs. This program helped me with locating various resources for support and help with Madison's condition. Soonerstart provided Physical Therapist, Occupational Therapist & even a Speech-Language Therapist. Each therapist came to our home approximately 2 times a month and worked with both Madison & me. The great thing about SoonerStart is that they would show me various things to do with Madison at home.

Once Madison began pulling up to things our Physical Therapist noticed Madison was trying to stand on the insides of her little feet; practially on her ankles. The PT fitted Madison for orthodics (orthopedic braces); which helped a great deal. They also encourged me to get Madison some private PT. Later, when I started working in Tulsa, the therapist would visit at Madison's daycare center and would show her caregivers things to do with her.

Madison was nearing 3 years old and they even helped with the transition into the Sapulpa Public Schools 3-year old Special Needs Class.

If you have a baby with a disability please contact them.

Longest 8 Days of My Life

I think I aged 10 years during Madison's first 8 days of life. I was so uncertain of how I was going to handle being a new mom again after 19 years. Having Madison 5 weeks early, then being told I have a baby with Down Syndrome, who couldn't regulate her body temperature on her own. Guess, being born out in 28degree temps was the main reason she couldn't regulate her temperature. Later, we received results from the cardiologist that Madison has a hole in her heart. First thing I thought how on earth are we going to afford to have heart surgery with no medical insurance. Thank God, no surgey was required. Just have to visit the cardiologist once a year. Every visit to the cardiologist has been great news the hole is healing on its own.

One of our favorite nurses at Tulsa Regional Medical Center(OSU Medical Center)

I couldn't hold Madison earlier in the day but once the night shift nurses came in they let me sit & hold Madison. Little did I know we would be under that same nurses care three years later. She seemed to remember us; who doesn't forget a baby being born enroute to hospital along with having Down Syndrome. She was telling the other nurses on the floor that Madison was one of her NICU babies.

Down Syndrome Diagnosis

Madison and I arrived at the hospital via ambulance. As soon as we arrive the nurses take her out of my arms then roll me down the hall to a room that looked like a storage closet. (Hey, I just had a baby in my car and this is where they put me.) After sitting in the room for several hours I am finally taken to a semi-private room. The mother in the room with me has her baby--I want my baby. Well, they won't bring her to me because they are examining her. Finally the hospital pediatrician comes in and states he has to tell me some things about Madison. My mom & step mom are in the room with me and of course the family on the other side of the curtain. He did ask if I preferred my mom's to leave the room but I chose not to. He informed that Madison had several indicators of having Down syndrome and wanted to run some more test. So of course I agreed. My mom's stayed a little longer then left. I started crying my eyes out and questioning why us, we can't take care of a baby with Down syndrome. What exactly is Down Syndrome? I never knew anyone with Down syndrome. It took several days to get the chromosome test back that declared Down Syndrome (Trisomy 21). NOTE: Jon runs his own business so he wasn't there; I knew he had to work and he had a full schedule that day.

The following is a great description of our adventures with Madison. It sums up how we felt when we were told Madison has Down syndrome. It actually fits for every parent with a child with disabilities. Please read it.

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

OUR EXTRA SPECIAL SUPRISE

Our little Madison has been one surprise after another. The first surprise was getting pregnant after our son just graduated high school. I was in denial the first 2 months; because at my age most women are experiencing the pre-menopausal stage of their lifes. Once I realized I was pregnant, it was too late to have an amniocentesis. We did all the ultra sounds the doctor would order and the last one that was preformed decreased our chances of having a child with DS.
Approximately, 3 weeks later came our next surprise. Madison didn’t want to wait any longer; she wanted to make her appearance into this world extra special. She decided to have her daddy deliver her.
Once we arrived at the hospital the doctor informs us Madison has several DS indicators and wants to run the genetic test to determine his diagnoses. Suddenly, all our hopes and dreams for this precious little gift from God were taken away the moment we heard the results of the test. So many thoughts and questions about her future were rushing thru our heads. These feelings were normal for any parent just informed something is wrong with their little precious baby. However, Madison was a picture of health, except for a slight heart murmur & issues with keeping her body temperature regulated.
Madison may not reach the milestones as quick as other babies but she will reach those milestones with a little more love & some encouragement.
Our extra special surprise is that Madison is the most precious little girl to us & those who meet her.

Your precious little one will fill your heart with so much love, pride, amazement & joy.

Imagine the Possibilities