Friday, March 26, 2010

Light at the End of the Tunnel?

I'm almost afraid to say it but I think I can finally see the light at the end of the tunnel.  McKenna has been steadily improving over the last few days and today is the first day that I feel like I can actually watch her play instead of hovering over her in fear of her falling at any moment.

Yesterday she finished a 48 hour brain wave study.  I have never been so relieved to have her wake up early, I could not wait to get all of the electrodes off of her head and disconnect her from her monitor.  Today we had a very long visit with the pediatrician while she went over all of the testing that has been done in and out of the hospital.  We will be starting physical therapy and are also going to see a rheumatologist while waiting for the results of her brain study.  The pediatrician also called me after we left her office with a possible lead on what McKenna may have.  It is called Sydenham's Chorea and the characteristics of the disorder sound very similar to what she is experiencing.

I am doing better with things now that we have a plan.  We were discharged from the hospital with no diagnosis or plan for rehabilitation so it has been a tough week.  The nurse at our doctor's office actually offered to buy me a bottle of wine after I cracked when she asked me how things were going.  Being back in the hospital with her after all she went through as an infant was so difficult.  As much as we would like a diagnosis, watching her go through all of these tests is heartbreaking.  I feel terrible that she is going through all of this and hate watching McKenna struggle.  We just hope that she will be able to return to the same little wild girl we had a few weeks ago and she definitely seems like she is on her way.

Many, many thanks to everyone for your kind words and to all of our friends and family who have helped so much over the past few weeks.  We could not get through this without you!


JO said...

I am so glad there seems to be an upside now, and some improvement. Praying for you and your sweet baby girl.



Nan & Mike said...

I can only imagine how you felt being in the hospital again with her (hugs). So glad progress is being made and that they are continuing to research what is going on. I am continuing to pray for all of you...always in my thoughts honey. Love, Nan xxxooo

Heather said...

Hopefully she will be back to herself soon. I'm glad things are looking up today.

Jill said...

Glad to hear that McKenna is improving! xx

Anonymous said...

Jessica, thank you God for an answer! I have prayed for McKenna and you and your family for 3 days straight now. I woke up in the middle of the night last night to pray. You probably don't remember me but you and I were in the same group on FT in the newly pg w/trips group way back when.
Love, Melissa

Liz said...

I am soooo glad McKenna is improving. :) I don't know anything about what the doctor thinks might be going on but after reading a little about it at the link you provided it sounds like it will resolve on its own in time. Am I reading that right? I hope so. I'll keep praying for McKenna's speedy recovery. Zoe can't wait to play with her and Parker!

Laura said...

Thinking of you friend! I feel badly for being out of the loop! Please know that I'm praying for you! I'm glad that you're getting some answers.

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