a Smile is worth a 1000 words

Thursday, October 2, 2008 10:43 AM

 

Wanted to update with how good – or I mean GREAT – Rebecca is doing. I feel like she is staring in her own version of the movie Awakenings. Someone (God) turned on her “On” switch. She is so suddenly full of life,so awake, so interested in her world. So much “Our Becca”. She is Babbling, making lots of noise. She is moving all around the den again. Wrestling Daddy and I. She is playful. She is pulling to standing, and standing at the couch. All of these things she wasn’t doing in the week before we went to the beach. A few days after we got back from the beach, the light inside her came on. Its been a miracle. Please pray with us that it continues.

Her seizure activity seems to be in a relatively stable pattern. Ever since Dr. Leigh had us add the clonazepam at night for about a week when we see her getting into a bad pattern it has really been helpful. So as soon as we something starting, I can add the extra dose of clonazepam at her late night meds and it pretty much breaks the bad cycle. It is a wonderful little safety net.

On some other news, my Grandmother recently passed away. Don’t feel sad for me – she had suffered from Alzheimer’s for many years, and I am glad she is no longer suffering. She is in heaven with my Grandfather again. What is nice is this weekend we are having the memorial service. My brother and his family will be coming from Arkansas. I haven’t seen them since before Rebecca was born. Rebecca gets to meet Uncle Steven, Aunt Karen and her cousins for the first time! There will be many other family members traveling to Raleigh. Please pray for everyone’s safe travel, and that Rebecca has a good weekend, so she can enjoy the time with her family.

*on a sad note the baby I had requested prayers for in my last journal was called home to Jesus – feel free to go back to my previous Journal to find the link to Gracie’s site again. * Thank you to everyone who prays for Rebecca, you all mean so much to me!

 

 

Friday, October 10, 2008 1:57 PM

 

Just wanted to update because Rebecca had her first full week of Preschool this week. She went Monday, Tuesday and Wednesday from 9 until 1. She did GREAT and had a fabulous time. I stayed with her this week, so that her teachers could get a better feel for her, and so that if she were to have

a seizure that I could alert her teachers since they don’t know what her seizures look like. The good news is that she didn’t have any typical spells while in school. Next week I will probably be a good mommy, and let my daughter be on her own like a big girl with the other kids and the teachers.

I know she is in good hands (and frankly I look forward to some “Me” time).

I can’t believe how much she has already come out of her shell. Now those who know Rebecca – say “What shell?” Rebecca is such a friendly little girl. But she is really engaging in her environment. She is watching the other kids (well they are all boys, so I should say the boys – my daughter, the flirt).

She has had so much energy. I can’t get over it. I feel so blessed. Later this month we see Dr. Gallentine. Then in November Rebecca has another MRI, and see’s Dr. G (the Dr. following her because of the previous optic glioma), and Rebecca gets to see Dr. Mikati, the new chief of Peds

Neurology at Duke. He from Johns Hopkins, and has some new ideas about treatment for Rebecca. I am excited.

Please continue to keep Rebecca in your prayers – God has been faithful!

 

Wednesday, October 15, 2008 9:50 AM

 

I copied this from the Yahoo Childhood Epilepsy Group. (This petition only applies to friends in the United States). Dear Friends, The Epilepsy Foundation is trying to collect 100,000 signatures in support of a cure, better care and an end to discrimination. Please sign right now at

http://www.epilepsypetition.com We want to show the new President, Congress and your state legislature that the public supports our cause! We also want to raise awareness. Since we launched this effort last week, we’ve collected more than 1,000 signatures. But we need to collect 99,000 more by our deadline of December 31, 2008. We need your help!!! Help us spread the word!!! Please – post this on your Caringbridge, or other blog sites, or other groups you belong to. (even if you are outside of the US but

have many US friends) Lets get Epilepsy more funding so we can get our children cured! Rebecca, David and I thank you very much.

 

Sunday, October 26, 2008 7:00 PM

 

Rebecca continues to do GREAT. She is doing well in school, and loves her teachers.

She is doing fabulous in therapy and is making great strides. She has done some really impressive things the past few days, including pushing up to standing from her little theradapt chair, and then standing there with just one hand on the arm of the chair. She even lets go briefly, and then grabs back onto the chair and lowers herself back to sitting! But today, I got the most precious gift, a smile. Because of her seizures she doesn’t smile much. But today I got a real smile. It used to be she

only smiled during a seizure, but this wasn’t seizure related. She was watching the kids/pre-school show “Imagination Movers” on Disney Channel and she was really responding to it. The guys on the show were signing a really cute song, which was all about making a song out of fun noises (which is her favorite thing, funny mouth noises), and she really really got into it. She was waving her arms, making her growling noises, and intently watching. I’ve never seen her react that way. Then a short time later she looked at me and grinned, a very happy, grin. I got so excited I jumped up from my chair and ran to her in her wheelchair and hugged her! Then after her nap (all that excitement wore her out), she gave me another sweet grin when I went to get her. I was giggling and teasing her when I went to pick her up, and she grinned at me, knowing I was being silly! I have been praying for her to smile for so long! I’ve been able to accept the seizures, but have just prayed that she would be able to smile and

laugh! Thank you Lord! Of course she also has so much energy. Right now its 7pm and she is still full of energy and attacking my legs (wrestling me as we usually refer to it). If you ever need a sparring partner, I’ve got a 3ft 30lb one for ya!

 

 

Tuesday, October 28, 2008 4:00 PM

 

Just wanted to update. We had some clinic appointments today. Turns out we won’t see the Neurologist until November. But I wanted to update on Rebecca’s growth spurt.

She is now 32 lbs (Holy Cow did my child grow!)

and 37 1/2 inches – probably even more, the woman doing the inches measurement has always been notorious for getting it short, but not fully extending her legs and stretching her out tall. At first we tried doing her weight by having her stand on the scale holding onto my fingertips. But the weight came up 28lbs. I looked at the NA, and said, “NO WAY”, she has been 28lbs for Months, there is just no way she is still 28lbs. So we zeroed the scale out, and sat her down. That time it came to 32. I looked at that number and said, “Ahh, that is more like it!” I’m willing to be her height is probably another 1/2 to 3/4 of an inch more than they measured her at. I coulda sworn the 3T pants I grabbed for her this morning were really pants not capri, but when you put them on her, they were capri. Guess this means we need 4T clothes this winter. Haha She continues to do great. Off the charts with her energy and enthusiasm.

She did have one atonic seizure the other day (complete loss of muscle tone), and fell and bit her check as she fell. That was pretty traumatic for her, and it took a long time to calm her down. The good news is though, other times when she falls she is actually putting her arms out to protect herself – this is new, and a huge improvement! Her klutziness is seeming to get a little better.

Thank you so much for all of your prayers – they mean so much to me.

 

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