Happy 1 Month to Matthew!
In the last few days, we’ve seen an improvement in Matthew’s eating time (instead of taking 45 mins to an hour, its typically taking about 30 mins) though today he’s back to his pokey style. We are hoping it’s a matter of 2 steps forward, one step back which would keep us on a positive trajectory.
The chromosome microray results came back a little different (q25-34.2) from the karotype (q21.1-31.3). We are awaiting genetics confirmation of which is correct. We like the microray results as the duplication is a bit smaller and closer to the tip of the chromosome, which usually results in less severe symptoms. But Matthew’s uniquenesses are what they are… knowing the exact duplication isn’t a necessity and won’t change Matthew.
Most of Matthew’s uniquenesses are ‘wait and see what develops or doesn’t develop’. The one most recognizable outward symptom of his duplication is a feature that will never develop…his lack of thumbs. Ironically that is the same symptom that helped to get him diagnosed and hooked in with early intervention before he was a month. Alyssa realized he didn’t have thumbs the day after his birth.
Alyssa “He only has 4 fingers”
Me “Yes, he doesn’t have thumbs”
Alyssa “On both hands?”
Me “Yes, on both hands”
Alyssa “Will he grow them?”
Me “No honey, he won’t grow them”
Alyssa “Oh, okay”
I know I learned a lesson from her youthful innocence. He doesn’t have thumbs, so what? Some have asked what we are thinking about doing about Matthew’s lack of thumbs. The two main options are to allow him to grow and adjust to life without thumbs and the other is a surgery that can move the index finger to a functioning thumb position. We are investigating both options.
Option 1- It’s amazing what the body does to compensate, as Matthew’s index fingers have already begun curving into a more thumb like position (as seen on his bone scan when he was days old). 1 out of 100,000 babies born are born without thumbs and are able to function. My best friend sent me this link the day after we found out about his thumbs. It shows the possibilities: http://www.youtube.com/watch?v=OyCaPaV5f9o&feature=youtube_gdata
Option 2- Medical technology is amazing as well! There is a surgery called pollicization that moves the index finger into a thumb like position, allowing the user more typical pincher abilities. This is considered a ‘common surgery’ with good results, some studies say that the pollicized thumb may have up to 75% functionality of a typical thumb. This was the first link we found after we found out about his missing thumbs: http://www.childrenshospital.org/az/Site1105/mainpageS1105P0.html and this handout has a picture of the hand post procedure http://www.brownhandcenter.com/patients/other-hand-problems/documents/22.pdf.
We will meet w/the hand surgeon in a few months to discuss the pros and cons, but these are the basic options. More to come when we find out more.
Besides the appointments and a few special considerations, Matthew is the typical one month old and we all are adjusting to life as the family with 3 kids 4 years old and under. We are continuing in our routine, enjoying the everyday and are thankful for it.
In the last month, we have moved from shock to acceptance and beyond. In those first few days, I looked at Matthew and saw his outward uniquenesses (like his lack of thumbs). I wondered how long it would take for me to not notice them, to just see him. I can say…sometime between then and now . I don’t know when it happened, but it has. He’s just Matthew. The cute, squishy, baby boy.
I’m still awed at how far we’ve come in this month. We know the prayers and positive thoughts have worked…we have found a network, felt loved and supported, become more knowledgeable, changed our outlook on life, etc. God is good! Thank you!!