Wednesday, July 10, 2013

Sweet Steps

k_sideKimani’s life is a dance of few steps. She is angry with the choreographer, though she takes it out on me. For I am the one who fails at reading her mind. I am the one who feeds her unappetizing things, too slowly, at the wrong time of day. I am the one who puts her into or takes her out of her crib against her will. I am the one who drains the water from the tub and runs brushes through her tangles. I am the extension of herself that is uselessly out of her control.

As she gets bigger and stronger and more frustrated and impulsive, I get more desperate. I want answers. I want help. I want a fix. That’s right... I want my baby girl to be all better.

I fantasize about fetal stem cell therapy; a needle full of fresh master cells plunging into her spinal cord and releasing new life into her brain. I imagine those cells going to work, developing into whatever she needs. They replace what was eaten by the meningitis bacteria. They stand in for the ones that suffocated to death while her aorta was resectioned. Day after day she blooms into the Kimani she was born to be. I researched programs, pleaded with neurologists and insurance reps, wrote to foreign specialists, and nothing. Fetal stem cell therapy is just a dream.


The best the neurologist could do was offer us drugs, and even though I hated the idea, we tried them. First Concerta and then Adderall. Both had powerful (and negative) effects on her so we ended those trials. “One more idea.” the doctor insisted, “We can try X. It is in a whole different class of drugs.”

We started her on the Guanfacine the last week in June and within days I saw the first change. I was feeding her lunch and when I gave her her drink cup she sipped and then put in down on the tray. I tried to take it back and she grabbed it and held it on her tray. I was stunned. How it always works is that I hand her a drink, she sips, and then throws it or pushes it away. I have been working on having her keep her cup on her tray for years.

Then the other day she was standing next to me in the kitchen, holding on to my leg and she suddenly went into the bathroom. I asked her if she had to go potty and she did not scream no or try to get away. So I put her on and sure enough she immediately went poo. We celebrated with cookies and m & m’s. She was not even done with her ems-ems when she started to cry and ran back into the bathroom. I put her back on and she went again. I was giddy. Oh My God... she told me she had to go, she waited until she got on, she knows!

Yesterday though, yesterday she blew me away. I was cooking dinner and she was sitting by my feet bugging me for snacks. I accidentally knocked the phone off the counter and it hit her hand on its way down. She made an unusually big deal out of it, screaming her head off. Daddy consoled her and I retrieved the phone and put it on the charger on the other side of the counter. When she was done crying she got up and wandered over to the counter, looking up and around for something. I thought she was headed for the box of Triscuits but instead she reached up, grabbed the phone, and threw it across the room. My jaw dropped.

She got hurt. She knew what hurt her. She got mad at it. She remembered she was mad even after she cried for a while. She got even. SHE GOT EVEN. She decided to go after the phone. She was on a mission. She planned it and executed it. This is the very first time she has ever done anything that indicates a plan, a decision, an understanding of process. I am freaking crying just typing those words.

Most people with Ds do not struggle like Kimani because her difficulties are not directly linked to her extra chromosome. Yet just seeing how a drug can effect a person’s ability to tap into and control their own mind has made me wonder what therapies could potentially positively change outcomes for people with Ds? This is not science fiction; not some far off fantasy like master stem cell therapy. There are brilliant researchers out there right now searching for said therapies.

They can’t do it alone though. They need samples, thousands of samples. They need a Down syndrome bio bank and a patient registry. Below is a chart showing where Ds research stands in comparison to Autism and Cystic Fibrosis in the area of raw data/samples.


We can do this. We can bolster Down syndrome research by raising funds to support our researchers. We can participate by donating hair and blood samples and key information for a Down syndrome biobank and centralized patient registry. We can give researchers what they need to build the healthy future our children, and all people, deserve.

This August you will get the chance to be a part of it all. It’s coming. Are you ready? We are.



Anonymous said...

Wow, your hubby sure is a slacker!!! You do (insert GRE word here)aka too much. He should really be more supportive and at least put the girls to bed once in a while. I have 3 of my own and I put them to bed almost every night! Your hubby and I need to talk!
BTW you can send hair and blood samples to the research bank, you can send them for the mystical stem cell research also if you need it. I love my girls and any advantage that I can give them will help them in the future. People may worry about adding their children to a central database, but really???? if the government or anyone else wants that info they can get it through whatever means they desire. This is not likely to be used in a nefarious manner. Wake up my DS community! help me help my girls and anyone else that may want or need help. Lets not forget either that our children most likely hold the KEY to curing 90% of cancer (my own statistics, not backed by any real knowledge).

Father of 3 t-21's (AKA Anonymous)

TUC said...

I knew, I just knew that first paragraph would kill you ;-)

lisa said...

Forgive me if this sounds too bizarre for you but have you tried or thought of trying obtaining breastmilk to feed her...all kinds of magical things have been found in there:) My daughter was lucky enough to be able to nurse - heart condition wasn't the sort that made her too tired or weak - and she is doing **really** well...sorry to hear of the other medical struggles you've had!

Becca said...

Ooooohhhhhh...PERFECT post!!! From beginning to end. Omg, that sweet, beautiful girl of yours...I was grinning from ear to ear reading this. I hope, hope, hope she continues to do so well on these new meds, and I hope, hope, hope we can rally the troops in August. Love this. Sharing...

TUC said...

Kimani nursed for the first year... I would definitely continue to give her breast milk if I had a healthy source I could get it from. Mine is long gone.

Kathy said...

was made aware of your blog via Becca at the Bates Motel. Do I really have to wait until August to know what's happening with the biobank for ds? And, if you would be my friend on fb, it would make it so that I can continue to put off figuring out how to "subscribe" to blogs, since fb is the only way I know about new blog posts... I know, lame.

Anonymous said...

I have a son with DS and an older son with ADHD. my ADHD son is on gaunfacine twice a day with his morning ritalin. I'm glad its benefiting your daughter.

Sandie Flannery said...

I have a lump in my throat and am holding back tears!! I feel for you! And I grieve with you!!And I am SOOOOO excited for you AND Kimani!! It must be so relieving to be finally able to be able to understand your own feelings and express them, communicate them and be understood!!! Awesome!!

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