Long time away.

I haven't posted in years.Well, a lot has happened in the last few years. Madison has been diagnosed with Hypothyroidism and Celiac Disease.  The gluten free diet has been a little tough. We Have to drive 4hours roundtrip just for her testing and follow up visit.

Madison's Beautiful Face Will Be On Time Square!!!!!!

Madison's Beautiful Face will be on Time Square!!!!!

After several years of submitting Madison's pics to the New York City Buddy Walk Video; her picture was one of 1200 chosen this year. New York City Buddy Walk will be on Saturday, September 24th, 2011.

The video will be shown on the MTV Time Square Screen. Then approximately mid-October, 2011 the video will be featured on www.buddywalk.org website. Just wish we could attend the NYC Buddy Walk to view it in person.

What a great way to promote Down syndrome Awareness!!!!!

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.