Saturday, May 29, 2010


The face that I have not updated this blogs in 2 months simply means that life has been rather uneventful.

The removal of Marley's adenoids and tonsils as well as getting ear tubes have allowed much improvement for Marley. Not only is she sleeping better, she is eating more, has more energy and is no longer sick! Since her surgery in March she has gained more than a pound and finally has gone up a size in her clothes. She is also now walking while pushing a toy walker (slowly) and crawling up stairs. She is happy all the time and now naps for 2 hours during the day. Heaven!

I am so glad she got her adenoids and tonsils removed. It is the best decision that Jason and I have made since she was born.

Since the surgery we have been back to cardiology and her coarctation and pulmonary stenosis are unchanged. For now, we will follow up with them every 6 months- but there are no foreseeable plans for another cardiac cath anytime soon. We went to Ortho last week who is monitoring her dysplastic hip, leg length discrepancy and abnormal turning of her feet. The doctor does recommend braces to help stabilize her legs and feet but otherwise does not need us to follow up with him for another 18 months. 18 MONTHS! Crazy! At that time he will evaluate her hip issues for possible surgery.

And we recently met with a new geneticist who specializes in skin disorders. She could not offer us a diagnosis but said she would try to find other kids who have similar characteristics as Marley. There also may be more specialized genetic tests she could do. Her expectations (as well as ours) are low that she will find out what syndrome Marley has. But geneticists are problem solvers and there is nothing they love more that seeing a kid with a configuration of characteristics that they have never seen before. They love the challenge. Personally, I am glad they are so interested in Marley- but diagnosis or not- Marley will always just be Marley.

I continue to mourn the fact that she won't be like every other kid while at the same very intrigued by who she is. God, she is weird. She is just one crazy, little girl. I think one day I'll have to shave her hair into a mohawk, dye it green and purple and dress her in the funkiest outfits- just so her appearance can match her personality. I think she will surprise me and all of us by the things she accomplishes and overall the person she becomes. I wish I had an inkling of what the future holds for her.


Krystle said...

Yay for new pictures & a healthy sleeping Marley! Your last paragraph made me tear up, for multiple reasons. I think it's great that you have high expectations for Marley and are excited to see what the future holds for her. I often wonder how Peyton will turn out and if her CP will affect her more, or less, etc. It's so overwhelming at times, especially when I just wish she was normal and didn't have a bazillion dr's appointments. I know it's nothing more than I can handle, and that we still love her just the same. I find it odd that a geneticist can't figure out what she has. Have they ran your and your dh's DNA to see if anything stands out from that point? What if you have other children? (Do you want other children? =) )

Alison said...

I'm so happy that things are going well for you guys!! She's getting big! I was reading another blog and I found this poem. I thought of you after reading it...

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with an illness." The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with an illness to a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."