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Thursday, September 26, 2013

"They Call Her Icebox" part 2 (how far she's come).

You saw yesterday that Miss McKenna is doing it; she's playing football - real tackle football - and keeping up with the boys (or keeping them in line, one or the other...) I know many out there think girls don't belong in tackle. But I've never seen my girl quite like this; she's focused, she's determined, she's being challenged, coached and loved on that field (and rarely in trouble from boredom!) I highly commend and thank the league (WYFCL) for welcoming her in without reservation. No other sport has measured up to what football is doing for her. That's why we choose to spend 12 hours a week on that field.

It took a little searching, but I finally found this layout. It still hangs in her pediatric orthopedist's office. It was profound for me to create and even more to share. Here she is again, Braced for the Future:

~click layout to see original blog post.
and this, written at 4 months:

Friday, July 28, 2006

We're all better! Some of you know that my now 4 1/2 month-old daughter, McKenna has been battling hip dysplasia, which we found out at 2 weeks old. She hasn't had any dislocation, and her case seemed minor at first, but it took two braces and about 3 months to get to where we are now; we just found out Wednesday: healed! Her 3rd sonogram reveals a wonderfully shaped and realigned left hip! We were supposed to have 10 weeks to wean off the brace when we got to this point, starting with taking it off 4 hours a day for 2 weeks, but we even get to START the wean with 8 hours a day! I can't tell you how much happier she was today, with her first 8-hour break. We finally have our baby back! It's just that... she's so mushy now, I almost don't remember how to hold her!!!
BTW, on a side note: I thought that being braced would hinder milestones, but we took it off of her Sunday, put her on her belly, and she flipped to her back like a pro! She was so proud of herself, it was amazing! 

I posted a video the other day of her running the ball in a drill - it's not what she does often, but it touches my heart because of how far she's run so far, metaphorically speaking. 

Read this email I sent to friends and family when McKenna was about 7 months old (what wonderful thing technology can be, to hold records such as these to follow!):

Subject: Lil' Miss McKenna 
Sent: Tue, Oct 24, 2006 8:50:31 PM 

Dear Friends and Family,
It seems we've finally come to the end of a very long road.
I think we're finally ready to tell the complete story of McKenna's story.
December 23rd, 2005, I went, 25 weeks or so pregnant, to the OB's for an unrelated checkup that resulted in an ultrasound. My initial worries were unfounded; however, mom and & I were drawn into my doctor's office for some other reason. It seemed that a "cystic hygroma" was found on the baby. Opening his medical journals, I read that it was not genetic, but for unknown reasons during development, a blockage happens in the baby's lymph system. The mortality rate for such cases is 100%. We asked awful questions, and no one had answers. He got us into, mind you 2 days before Christmas, a specialist in maternal/fetal medicine at a well-known hospital nearby (thank goodness for living in NY.) We had level 2/3 ultrasounds for the next 17-18 weeks, every to every-other week tracking this "thing" and the baby's progress.
She appeared healthy and of normal weight and I of normal pregnancy. I found just 2 support groups that had more information than any doctor we had talked to. Cystic hygromas, soon after called lymphangiomas, and now most often lymphatic malformations, are found at all stages of both pregnancy and child development, are no longer fatal, especially if found later, and are most often found around the neck/face area, with the second most often area being under the armpit. McKenna's was on her thorax, and appeared to be outside the ribcage.
After much deliberation, and not knowing where our baby girl was to be born even days before she came, Doug & I decided that a C-Section at our home hospital was better than vaginal delivery at a strange hospital with new doctors. We had 4 days to prepare for her and on March 13, 2006 she was born, pink and beautiful, with a little bump on the left side of her chest. She was, of course, rushed for a chest x-ray and returned to us with no situation imperative.
We named her after 2 days, and we all left the hospital 4 days later and life began its new normal. We began seeing a pediatric surgeon - which, although I may have said those words before, the trueness of what these doctors actually do never dawned on me - until we stepped into the O.R. of Westchester Medical Children's Hospital with McKenna at 6 weeks, at 7 o'clock in the morning for an MRI, as her doctor greeted us with smiles and scrubs, assuring and reassuring, handing tissues and reaffirmations.
All appeared fine, and still nothing so serious that couldn't wait until 6 months. Of course, it was right around/before then that we found out about her hips and she ended up in a hip harness for 12 weeks; 1 doctor, 2 braces, 1 e.r... Her apparently complete recovery brought us to exactly 6 months of age and then into the O.R. we went. (side note: we have a checkup of her hips tomorrow.)
To have surgery and say it's a harrowing experience is pretty much the norm. To watch your child go through a surgery that is not normal, not very well known, and is, in most parts "exploratory" is unexplainable. To see a 6-inch scar on a tiny baby's chest is shocking. To hear a doctor or two say, "Well, it was much bigger than we thought and we think we got it all..." is scary.
We stayed with Lil' Miss McKenna overnight at Westchester and, needless to say, all of the nurses with the exception of one, were absolutely amazing - just what we had heard.
We've been home a month now. Last week we got the pathology and it was just as we had hoped. The short of it is "tissue and fluid concurrent with lymphatic vascular malformation. There is a chance that this LM will return and also a chance of nerve damage affecting her left side. We'll cross those bridges if and when we get there, but at the moment, she looks amazingly healthy. Yesterday we got the go-ahead to live life and not see her peds surgeon for 6 months. Relief has new meaning in this house.
Last week, just after she turned 7 months, she picked up where she left off the day before the surgery, now and again rolling, babbling and possibly saying dada, belly crawling, following her big brother all over. She's still wonderfully mild and easy-going, also a great sleeper and just all-around happy girl. Big brother Matthew is SO proud of her - so protective and playful and even has his own little "little sister voice" for her. He makes it his job to tell us to be careful of Kenna's boo-boo and to keep quiet when she's sleeping.
Our entire family knows that only prayers have gotten us this far, with our two amazingly beautiful and happy and healthy children. I don't know that we will ever be able to thank each and every one of you who prayed for us daily, in silence, out loud, alone, in groups. We'd also like to thank those of you who have been patient with us, sensing and understanding that we've needed time, space and silent prayer to endure this last year day by day. We'll catch up with each and every one of you in the next coming year.
I hope this finds you healthy. Photos will soon to follow.
God Bless.
Yours in prayer and hope and family and friendship,
The Krauss House
Lindsey, Doug, Matthew Daniel & McKenna Michelle

So hopefully you can now tell why this is more than a seven-year-old girl wanting to play football. It's another step in her journey, and another example of what a fighter she's been her whole life!