|waiting for the Doc…|
Yowza where did the week go? Is it really Thursday? I haven’t been here in my little corner of cyberspace since Monday? How can that be?
Oh right…life has been kicking my butt this week. Nothing bad mind you, all good things, but I feel like I wake up in the morning and I am already behind. There are several big family events coming up to prepare for, my sister-in-law and brother are facing quite a difficult time ahead, and Miss Courtney is awake ALL day long. I mean this girl is on fire!
|She dressed like spring!!|
Today was a big day in the Lenaburg household. Miss Courtney had a BIG appointment with her Neuro team at Georgetown. I dressed her in her happiest spring duds and we headed into the city to see what the team thought of Miss Court’s most recent improvements.
After dealing with a crazy 90 minute commute (it usually only takes us 30-45 min) that included some hairy naked guy driving his Mercedes Benz while putting his clothes on (no I am NOT kidding) and about four accidents on RT 66 (watch what you’re driving people!) we finally made it to our appointment with five minutes to spare.
|beauty on the Georgetown campus…|
Then the real fun began. There were vitals to take, medical students to talk to, residents to talk to, weight to take, history to give, blood to draw, previous test results to discuss and then finally we got to see Dr. Santos. Miss Courtney showed off and was giggling, moving around in her wheelchair like she was doing the Cha Cha Cha. She looked toward him when he spoke to her. She tried to “help” him when he was doing her reflex check by grabbing his little hammer, laughing while he did it.
|more beauty…so lovely…|
Finally, we chatted and went over all the little tests that have been done in preparation for this appointment. Then he gave us the verdict.
Miss Courtney is doing PHENOMENALLY WELL!! That’s right my friends. All the stress and medical drama we have been through this past year, she has not only made it back to baseline but is now PASSED it!!
Her liver is normal, her kidney’s are fully functioning, her EEG has not changed, her lungs are clear, and her seizures are under the BEST control they have ever been in her lifetime! One a day…maybe…and no oxygen deprivation. I love it that she sleeps about 6-8 hours a night and no longer. No need for E.R.’s in the last six weeks.
She is doing something new every single day. She has found her lips and has been smacking them and smooshing them together all the time. She uses her voice box in a way she never has before. She hits higher pitches and actually sounds like she trying to speak.
|one very HAPPY Mama…never give up my friends…never…|
The best thing is that she now whines. Yes, you read that correctly. She is whining and I love it. She actually gets upset when she has a dirty diaper or when she is hungry. This is the first time she has used her voice to alert me to something not being right. It.is.awesome.
Yes, I love it that my daughter whines. I love it that she is giggling when she smacks her lips together. I love listening to her sing…loudly…everywhere…all the time…
It seems that taking her off the Depakote was the best choice we could have ever made for our girl. So our crisis in January was worth the horridness since it led to us changing things up.
Life is new and challenging for me these days. Miss Courtney has become high maintenance in a whole new way. She loves being outside and taking long walks. She loves listening to country music and Michael Buble is a new favorite. She requires a lot more hands on time than I am used to. I am not complaining mind you, but there are adjustments I need to make.
|BFF’s, window shopping and ice cream…SCORE!!|
My favorite news of the day is that we have been released for the “team” meaning we don’t have to go back and see Dr. Santos until November ( that SIX months people!!) unless something bad happens. I am so used to our bi-weekly visits that to now be given some freedom is a little overwhelming. The Doc also recommended we return to Occupational Therapy to start working on getting some fine motor skills to help her to try to feed herself.
How cool is that??
So thank you dear friends. Thank you for storming the gates of heaven for my girl. I believe we have witnessed yet another miracle in this child’s life. There is no other explanation for this complete medical turnaround. Thank you for not giving up on us and always lifting her up trusting each time in God’s plan for her.
As you know, this could all change tomorrow. It has happened before and I have no doubt that her health will go south again. I just want to make the most of this repreive. I want to LIVE fully and freely while we can. I want her to learn and grow in anyway she can. Whatever is possible for her to do, I want her to do, so that when she takes a turn for the worse again, it will take longer to hit bottom.
|Miss Courtney and Daddy snuggling this evening.
I heart my husband and his devotion to our daughter.
We celebrated by joining our friends to do a little springtime window shopping at the Mall followed by a little ice cream treat. Oh what fun we had. What a beautiful day it was from beginning to end.
Tonight, my hubby snuggled with Courtney on the couch while reading her the days headlines to her. The love between these two is so beautiful for a Mama to be a witness to. She is his princess and he is her white knight. I should know, he is mine as well.
There will be much to do in the coming weeks. There will be OT and PT to do every single day and with the professionals, there are lots of books to read to her, tummy time to have, a new feeding schedule to create and work on and snuggling to do, besides the whole wife and homemaker thing.
I can do it…without losing my mind…I think…maybe…
or maybe not…
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