Thursday, February 19, 2009
Brain and Eyes...check (with pictures)
Well, Ella went to the Neuro-Ophthalmologist today and it went really well. They said that she has actually improved since the last visit (October 2008). He said the he couldn't diagnose her with Ocular Motor Apraxia, which was what they were thinking she would be diagnosed with. She did a good job of tracking objects from side to side and up, but we are still struggling with looking down (without moving the head). He reviewed her EEG from last November and said it looked good since there were no obvious seizures, but after looking at her MRI from July of 2007 he noticed that her optic nerves are small. He didn't really say if it was going to make a difference in her vision. A lot of it will depend on how she learns to cope with her vision, responses, processing time, and physical limitations. We will continue her vision therapy, both through the school district, with occupational therapy, and just around the house. We will visit with the doctor again in the Fall and they are looking at doing something similar to the EEG, but for optical reasons...who knows what all that means. We are thankful that it isn't anything serious at this point and we can continue along our usual path to help Ella. Thank you so much for your prayer...they are answered daily!
Monday, February 16, 2009
February Ramblings
Well, I started to write a few weeks ago and just haven't sat down and done it. I'd say I've been really busy, but with Kristie here to help I don't really have a good excuse.
Last time I was writing I just spent the weekend with a family who is very dear to me, the Neff's. Lesa and I have been friends for so long now that I'm not sure how it started or exactly when...somewhere in my 9th or 10th grade year...so like 15 years ago...wow. Lesa's grandmother passed away and so I joined them for the service, burial and family time afterwards. It was so great to be with them, but so sad to see their hearts broken. I hope at my funeral my grandchildren and children remember me as lovingly...and that my love for Christ stands out more than anything else, just as her's did.
I also got to see a dear friend, Alyssa Byrd. To me she'll probably always be Alyssa Margrave, but that's what happens when you know your friends before they are married. Alyssa and I met about 10 years ago when we were both going through a rough time. We've lived in different states more than we've lived near each other, but I consider her a "heart friend". I was pregnant with Will the same time she was pregnant with her Sydney and we were supposed to deliver within days of each other, she lost her baby girl a couple of months before we were due and my heart still grieves for her family. Alyssa and I got to hang out at the park with our kids and just catch up on some face time. It was good to hear her voice and see her smile and laugh. I pray God's goodness over that family.
While spending time with so many amazing girlfriends lately I've been reminded of who I am in Christ. I have always struggled to accept myself. I've never been very confident and never loved my earthly body, but I'm beginning to love myself more as a daughter of the one true God...pretty amazing that I'm made in the image of God, Christ, AND the Holy Spirit! Now, if I can just pass the values of Christ on to my daughter.
Speaking of Ella...she makes us more proud every day. We are working with her gait trainer and a few weeks ago she took 7 steps in a row...PRAISE GOD. She practices twice a week till she gets better at it, then we'll start working on it at home. It's a lot of work and takes 2 adults to get her to get going. She had a hearing test today, they are a little concerned, although she technically passed all of her tests. We are going to re-test again in April and then possibly do a sedated test after that. There is some concern that there is damage or some hearing loss...typical with meningitis.
Will is ALL over the place. Right now he has double ear infections (which does effect his sleeping) but otherwise he's SO much fun. It's amazing to see the difference in my children. Will wants to be climbing and running and pushing and playing all the time. He is slightly moody and doesn't quite understand the word "no". Discipline is harder than I thought, but we are sticking with it because the Bible tells us to.
My heart is taking a beating for Ella lately. Our pastor has reminded me that Ella's condition isn't about me, it isn't about our family, it's about the glory it brings the Lord. That's hard to remember, but through scripture I'm reminded daily what is really important.
Speaking of scripture, Joe and I are working on learning our scripture to earn a free cruise at the end of this year. The real reward is actually having so much of the Word in our hearts, but it's nice to see an earthly reward as well. I've already recited 35 verses...and I'm loving every minute of it!!
People ask what's new with us and I'm at a loss. Not really a whole lot...it seems. I feel like they want to hear something big like "Ella's walking" or "she said her first word", but I can't say either of those right now.
Joe and I just celebrated our 6th Valentine's Day together (5 married) and it was wonderful. I am the luckiest girl in the world...and I thank God for my family every day!!
Last time I was writing I just spent the weekend with a family who is very dear to me, the Neff's. Lesa and I have been friends for so long now that I'm not sure how it started or exactly when...somewhere in my 9th or 10th grade year...so like 15 years ago...wow. Lesa's grandmother passed away and so I joined them for the service, burial and family time afterwards. It was so great to be with them, but so sad to see their hearts broken. I hope at my funeral my grandchildren and children remember me as lovingly...and that my love for Christ stands out more than anything else, just as her's did.
I also got to see a dear friend, Alyssa Byrd. To me she'll probably always be Alyssa Margrave, but that's what happens when you know your friends before they are married. Alyssa and I met about 10 years ago when we were both going through a rough time. We've lived in different states more than we've lived near each other, but I consider her a "heart friend". I was pregnant with Will the same time she was pregnant with her Sydney and we were supposed to deliver within days of each other, she lost her baby girl a couple of months before we were due and my heart still grieves for her family. Alyssa and I got to hang out at the park with our kids and just catch up on some face time. It was good to hear her voice and see her smile and laugh. I pray God's goodness over that family.
While spending time with so many amazing girlfriends lately I've been reminded of who I am in Christ. I have always struggled to accept myself. I've never been very confident and never loved my earthly body, but I'm beginning to love myself more as a daughter of the one true God...pretty amazing that I'm made in the image of God, Christ, AND the Holy Spirit! Now, if I can just pass the values of Christ on to my daughter.
Speaking of Ella...she makes us more proud every day. We are working with her gait trainer and a few weeks ago she took 7 steps in a row...PRAISE GOD. She practices twice a week till she gets better at it, then we'll start working on it at home. It's a lot of work and takes 2 adults to get her to get going. She had a hearing test today, they are a little concerned, although she technically passed all of her tests. We are going to re-test again in April and then possibly do a sedated test after that. There is some concern that there is damage or some hearing loss...typical with meningitis.
Will is ALL over the place. Right now he has double ear infections (which does effect his sleeping) but otherwise he's SO much fun. It's amazing to see the difference in my children. Will wants to be climbing and running and pushing and playing all the time. He is slightly moody and doesn't quite understand the word "no". Discipline is harder than I thought, but we are sticking with it because the Bible tells us to.
My heart is taking a beating for Ella lately. Our pastor has reminded me that Ella's condition isn't about me, it isn't about our family, it's about the glory it brings the Lord. That's hard to remember, but through scripture I'm reminded daily what is really important.
Speaking of scripture, Joe and I are working on learning our scripture to earn a free cruise at the end of this year. The real reward is actually having so much of the Word in our hearts, but it's nice to see an earthly reward as well. I've already recited 35 verses...and I'm loving every minute of it!!
People ask what's new with us and I'm at a loss. Not really a whole lot...it seems. I feel like they want to hear something big like "Ella's walking" or "she said her first word", but I can't say either of those right now.
Joe and I just celebrated our 6th Valentine's Day together (5 married) and it was wonderful. I am the luckiest girl in the world...and I thank God for my family every day!!
Valentine's Day
Will decided he wanted to be in on the first picture. Joe planned a great night...we went to sushi at my favorite place in Richardson and then to the Eisemann Center to hear "Music for Lovers" by the Richardson Symphony Orchestra.
..GREAT night.
..GREAT night.Kimmie Birthday
Kim and I have been friends for 7 years and it was so fun to celebrate her birthday this past weekend...love you Kimmie:
Crazy House
Yeah, we decided to have 9 kids over for a playdate last week...crazy, but a good kind of crazy!
Workin' Man
Will actually loves to sweep. He's not very good at it, but he's learning. He HATES the vacuum, can't complain.
Tuesday, February 03, 2009
Too Late to Write
Okay, so it's 10:30pm. That may not be late at your house, but it's VERY late at ours. The kids are asleep, Joe is in bed and sick (I can hear him coughing, poor guy) and all of my girlfriends have left the house after a great bible study tonight. There is SO much I want to write about, but I really should finish cleaning up the house (and I'm not at 10,000 steps yet). So, here are a list of things I want to come back and write about:
- what the heck is the 10,000 step comment about
- how much I love the Neff's and grieve for them right now
- loving that Alyssa is in town and that I got to meet Liam and she got to meet Ella and Will
- who I am in Christ
- who I have become (because of the above statement) versus who I still see myself as being
- oh, Will's birthday party...should probably post that
- life at our house since I last updated
So...send me things that you want me to write about or post on and I'll get to it...maybe not tomorrow, but it will give me something to use as a goal. Oh, and sorry if you aren't on Facebook...that's where all my updating happens lately.
Subscribe to:
Posts (Atom)