My photo
I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Friday, May 21, 2010

A Good News Day

        We had a meeting with Emily's Pre-K teacher yesterday, to discuss Emily's end of the year testing scores. Miss Emily has made great progress this year in all areas. Her final test scores show that she is testing 14 months ahead of her actual age.
In just 18 days Miss Emily and Floyd will be leaving for Illinois. Emily will be spending 4 weeks this summer with her grandma. Being that Emily will have one-on-one attention from grandma and grandma is wanting and willing to work with Emily on some academic studies, it is going to be interesting to see just how much more knowledge Emily will retain while out of school.
All I can say is Watch Out Teachers At Codington Elementary. Here comes Miss Emily....
Earlier this week we registered with FamilyCord to have Nathaniel's cord blood stored. This was a tough decision for us to make. There are so many companies which store cord blood, who to choose. We chose FamilyCord for several reasons. FamilyCord is run by a large team of Doctors and Genetist. Their facility has many accreditations. The company has a carrier service which will come to my hospital room soon after I deliver to pick up and deliver Nathaniel's cord blood to the FamilyCord Facility. The carrier service also insures the cord blood for up to $10,000 if they should mishandle the cord blood and it becomes contaminated or damaged in anyway. The company also offered a payment plan without credit approval. Our monthly payment is one that most parents can afford.
Before making this decision we spoke at length with Timmy's Endocrinologist Dr. Ali. After he explained to us that saving the cord blood would be a great idea, it wasn't absolutely necessary if we were doing so just in hopes of being able to help Timmy. Timmy's diabetes isn't the autoimmune form. His diabetes is most likely caused by his body not knowing what or how to process the insulin that his pancreas is making. This would be due to the cells of the pancreas malfunctioning. Being that Timmy's diabetes isn't autoimmune he would possibly respond with the use of donor stem cells. But with any stem cell transplant, it is best if the donor is a family member when possible.
We also took into consideration, that being Timmy has Down Syndrome, he is at greater risk of developing leukemia.
I know this sounds like our decision was based more for helping Timmy. This isn't true. We also took into consideration the benefits of being able to help our other children if necessary. No one knows what the future may hold. So best to be prepared for whatever the cards may be delt our way.
We have been working with trying to potty train Timmy for the past 6+ months. He has been making great progress. His adaptive potty chair from Rifton arrived yesterday. We all are so excited! Emily helped with setting up the switch that we will be using for Timmy to let us know when he is finished on the potty. We recorded the toilet flushing along with Emily saying "All Done. Finished" We are hopeful that one day Timmy will be able to either sign when he has to go potty and when he is finished or be able to verbally tell us of his needs
It is hard to believe that my little girl and little boy are growing up sooo fast. Where has the time gone...?.  

No comments: