Friday, June 8, 2012

Madison: The story of a spectacularly sassy girl

Yesterday afternoon the Special Olympics torch was ran by our house. Actually they did more then just run a torch around our small town, the torch is generally driven down here because of the distance and then ran through town. A few of the guys decided that the torch should be ran all the way in, all 44 miles. They were joined on the outside of town by a larger group of runners. They all wanted to bring attention to what was going on, to raise awarness in this small town, that even here we have children who benefit from the Special Olympics.

The majority of the run looked like this, hilly lovely empty country side

The Special Olympics has and is one of the biggest voices out there raising public awareness about people with disabilities. They believe everyone should have the opportunity to build confidence and stay healthy by learning a sport. Special Olympics heads leading research in the special health, educational, and personal needs of these individuals.

A dear friend from high school and I were pregnant with our first Sassy girls together. She was in rural Northern California and I was in rural Northern Minnesota, while our sassy little ladies are almost the exact same age, her daughter Madison had a scary delivery and a very tumultuous first few years. They are so blessed to have this sweet girl and I cannot wait for you guys to hear all about Madison's story. She has over come and fought through so much. Hopefully her story can help someone and give strength to those going through similar things.

~Madison Renee~
I was asked to write this guest post a while back and had a hard time thinking of how it was to be written. Our daughter Madison was born July 25th, 2006. She was 6 days overdue and as first time parents were anxious for her arrival. We scheduled the induction and everything went as planned. Madison was born at 5:37 am, 9lbs 1oz and 22 inches long.
From there it got blurry. She wasn't breathing when she was born, her blood sugars were at a 13 and she was limp. In our rural town we don't have a NICU, we barely have a nursery for the babies to sleep in. They took her into the other room and started giving her blow by oxygen and some sugar water through IV to get her out of shock. By 11:00am she still never came back to my room and I wasn't allowed to see her. Her prognosis was worse every time I asked the nurse what was going on. They decided to fly her out to a hospital 2 hrs. away that had a level 2 NICU. And there we stayed for 3 weeks.
No one knew why she was having problems, she was the biggest baby in the hospital but the most fragile. Surprisingly. We went through the geneticist and that was normal. Went through the Neurologist and that was somewhat normal, she had some bleeding on the brain from birth that was resolving. She does have a horseshoe kidney and thought to have a tethered spinal cord. Her main problem was no muscle tone, she looked like a rag doll when picked up. And that hindered her nursing or sucking on a bottle. She had her NG tube in when we came home. And I kept at trying to nurse, it seemed she could latch on but didn't have a strong suck. We tried all the tricks the nurses showed us in the hospital but nothing worked. After having the tube in for 5 weeks, she started to depend on it. Funny, thinking a 5 week old baby knew the difference but she was refusing to nurse and satisfied only by gavage feedings. So with the OK from our main Dr at the time we took it out....BIG mistake.
Without our knowledge she wasn't gaining weight like they had hoped. By 3 months she was diagnosed failure to thrive, but never once told her mother and father to figure out a new feeding plan. I still continued to breastfeed and nursed every 90 minutes seemed like. It wasn't til she was 3 1/2 months a feeding therapist noticed she was choking while nursing and took concern. Then, our world down spiraled for a while. We had to take her in to the ER for a horrible cough and were diagnosed with aspiration pneumonia. She didn't have a fever or pneumonia like symptoms. At first, they wanted to turn us away with just a cold, but always trust your parents’ intuition. The next month, it happened again. This time we took her to our family clinic and the PA refused to see her. Said it didn't sound like pneumonia and we needed to take her to a real pediatrician. So back to the ER we went, this time it was in both lobes.
Madison had another genetic test done at 6 months and it came back normal again. Jan. of 2007 she had a collapsed lung and was airlifted out to UCSF. She recovered well with no new answers. At that time, we decided that we will just take her as she is and love her like a child should be. We found a great new pediatrician that just happened to move into our town and were taking new patients. We began seeing him 3x a week for weight checks and once her weight wasn't changing decided immediately to get a g-tube put in. For us, it isn't just a trip down the street to our hospital. We had to drive 7 hrs. and stay 2 weeks while she underwent feeding studies and lung studies. We had seen the geneticist for the 3rd time with the same results. April 2nd, 2007 she had her g-tube put in. After that, her weight and strength sky rocketed! She had been seeing PT since she was 6 months old and after getting her proper nutrition started making great progress. She started to outgrow all her medications and with the help of her feeding therapist she started to take in different texture and started to eat food orally.
By the time she turned 3, she was fed thru mouth only. She was just learning how to walk and was almost ready for preschool. We still had her tube in cause it had to not be used for 1 year before it was taken out. Mostly, we had it in because we could give her medication thru it without her fighting. By Sept. of 2009 she was walking and had no tube and really no issues at all. She was still a frequent visitor to the ER because she didn’t understand that to control the flu she had to drink fluid. So she would shut down and dehydrate herself.
March of 2010, she had a seizure, first time ever. She hadn’t been feeling well that day and her fever spiked and caused the seizure. With her background of problems she was flown out again to Stanford. While there, we were seen again by the geneticist and were taught how to regulate her blood sugar. But this time, the genetic team was certain that they knew what she could have.
Early May 2010 we got the call that she had a rare syndrome called Soto's Syndrome, named after the Dr who found it. Everything that she went through at birth was normal to a baby with Soto's. But the reason why all the other tests came back normal is because it is an extensive test where they scan each strand of DNA for an error. To finally hear the words, that diagnosis was bittersweet. 2 years before we decided that we were going to accept whatever it was she had and live our lives. But finding out that this syndrome isn't life threatening was the greatest news.
In late May 2010, we had to go in for dental surgery. From all the antibiotics she was on and just having poor enamel she had several rotten teeth. When they were done, they only capped 9 teeth and pulled the rest. She had 4 abscessed teeth and giving her painful infections. They discharged us that day and told us she will bounce back no problem. Another mistake on our part for listening, but they did blame us for her teeth and how crappy we were feeding her. They were told before surgery what she was diagnosed with and that dental problems were very common in children with this disorder, but they didn't research it. Again we had to drive 7 hours home and she shut down from the pain, she choked on her liquid pain medicine and refused to eat anything. She was severely dehydrated by day 3 and we took her back to the hospital that had seen her when she was a baby. They were very understanding and admitted us for 3 days to let her recover on IV pain medicine. After she healed it seemed like her health was turning around.
She is only seen by her urologist right now for hydronephrosis of the left kidney. She had to have a stint put in and some cartilage taken out. We got to go to a conference in Texas for Soto's Syndrome families, and learned so much from the Doctors there.
She has finished the 2 years of preschool and is now in Kindergarten. She recently was tested again and was at a 2 year 8 month learning ability. Her overall health has improved tremendously as she has gotten older. She loves her 2 sisters, music, dancing and animals. She loves, loves sign language. We had our fair share of tantrums and frustration from her not being able to tell us what she wanted or needed. I’m not sure what will happen as she gets older or how fast her learning will catch on, but her dad and I are so proud of all that she has accomplished. She will probably always live with us and be our responsibility. She is our Madison Renee.

Madison, on right with her sassy sisters.

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