It's a day of "Celebration" in our house! I can't believe I forgot the camera when we went to the pool this afternoon. As soon as we arrived back home, I had to take a picture. Why was this day so special? Let me explain...
Madilyn was born with Malrotation of the Intestines and Limpomyelomeningocele, a rare form of Spina Bifida. She had to have a complete GI reconstruction at 5 days old. Her doctors had to wait to take care of her spine and the massive lipoma until she was 7 months old. The lipoma completely filled her spinal canal and was compressing her cord. She suffered significant nerve damage to her right leg and developed nuerogenic bowel. Her medical history is extensive with 8 major surgeries.
In March, it was decided that Madilyn had sections of her bowels that were floppy and the nerve damage has become permanent. Our GI doctor and Urologist decided the best route to go was to have a MACE Procedure done. They took a piece of Madilyn's bowel and created a tube that attached to another portion of her intestines and then connected it to her belly button. The reason being, so we could insert a 'cath' nightly and run saline through the 'cath' and it would enable us to flush her intestines. This would prevent her from having so many accidents on herself and give her more control over her body. It was not the easiest of surgeries but today it was apparent that it was completely worth all the struggles.
Madilyn went to the pool wearing only her swim suit for the first time ever. Before it required us to put a swimmer and then special swim pants over top of those before we could put her in a pool. She would have to be changed many times because she had no bowel control. The smile on her face said it all today.
It is so important to celebrate these kinds of moments. We each have magical moments! They may vary in size and degree but we have them. The trick is being able to see past the hard stuff and embrace the measure of joy within in each moment.
Today I am filled with gratitude for those who care for our Madilyn. Our team of doctors who have become part of our family....Dr. Kirsch, Dr. Busch, Dr. Reisner, Dr. Lewis, Dr. Vicki and Joe who makes interesting things for Madilyn's right leg! I think we will make homemade milkshakes to close out this most wonderful day!
In March, it was decided that Madilyn had sections of her bowels that were floppy and the nerve damage has become permanent. Our GI doctor and Urologist decided the best route to go was to have a MACE Procedure done. They took a piece of Madilyn's bowel and created a tube that attached to another portion of her intestines and then connected it to her belly button. The reason being, so we could insert a 'cath' nightly and run saline through the 'cath' and it would enable us to flush her intestines. This would prevent her from having so many accidents on herself and give her more control over her body. It was not the easiest of surgeries but today it was apparent that it was completely worth all the struggles.
Madilyn went to the pool wearing only her swim suit for the first time ever. Before it required us to put a swimmer and then special swim pants over top of those before we could put her in a pool. She would have to be changed many times because she had no bowel control. The smile on her face said it all today.
It is so important to celebrate these kinds of moments. We each have magical moments! They may vary in size and degree but we have them. The trick is being able to see past the hard stuff and embrace the measure of joy within in each moment.
Today I am filled with gratitude for those who care for our Madilyn. Our team of doctors who have become part of our family....Dr. Kirsch, Dr. Busch, Dr. Reisner, Dr. Lewis, Dr. Vicki and Joe who makes interesting things for Madilyn's right leg! I think we will make homemade milkshakes to close out this most wonderful day!
3 comments:
that is huge!!!! what a wonderful moment and the nice part is I'm sure there are many more to come!!
Congratulations! What a special day for Madilyn and you. Hope the rest of the weekend is great.
Nicole
Fabulous!!!! Thank you for sharing!!!
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