Baby #2

So at the same time that I learn of Max's diagnosis, I also learn that I am pregnant with baby #2. The genetics of BBS is that with each pregnancy between the same parents,there is a 25% chance of the baby having BBS. So everyone is on the lookout with this baby. It didn't take long for ultrasounds to confirm that this baby also has Bardet Biedl Syndrome. They could see cystic kidneys (which is another common problem in BBS) in the ultrasounds and that confirmed it. So we have a new journey with this baby. And boy, this journey is a doosey!  

Diagnosis - BBS

It turns out that those extra toes meant something. At 3yrs old, Max was diagnosed with the rare genetic disorder, Bardet Biedl Syndrome. What does that mean for Max? Max has developmental delay, a degenerative eye condition (retinitis pigmentosa) that will eventually lead to blindness, obesity, from not having the nerve signal fullness leading to uncontrolled eating, possible infertility, and yes polydactly (extra digits on the hands or feet). So now we know what we are dealing with. And so, it begins...the 5 stages of grief, until acceptance. To be honest I don't know if I will ever make it to real acceptance, because we fight every day to make life what it should be for Max. Sometimes, I feel we don'tfighthard enough, sometimes I feel we fight too hard, but my end goal is for Max to be happy and to experience as much as he can. It doesn't matter what that looks like for me, it only matters what that looks like for Max. My baby who has now grown into a 16yr old man.

Baby Max

At 7 months old, Max had those two extra toes surgically removed. Max was a very happy baby. He was happiest if he had a chunk of my hair in his hands. He liked hair so much that we bought him a doll, just so he could play with the hair. I should've kept that doll. I can tell you that I'm sure it wasn't easy with Max, but looking back, it was all joy! Well, Max was a growing baby...He grew and grew, and grew so much that the doctors started to become concerned. He also wasn't meeting developmental milestones. He didn't walk until hewas exactly 2yrs old. I didn't care. I carried that big boy everywhere. So the doctors were on a search to see what was going on with my Max.

Ten Toes, Ten Fingers

Ten toes, ten fingers. A perfect little boy. Wait, he has twelve toes. "No big deal," the docs say. "It happens. They are easily removed." Okay, he is still perfect to me. Maxwell, born June 10, 1994 weighing 9lbs 2oz.
And so my journey into motherhood begins!