So far, Phoebe's cutting 6 teeth, 4 all at once; the words she's using which I can make out are bye bye dada, poopoo, baba, Paul, meow, and the signs for more, all done and eat. Dec.14 is her next clinic appt at duPont and we have no idea what they'll want to do with her legs. Some visits ago they were talking about a hkafo, another visit they thought about more casting before any new set of splints.
The good news is she's standing more without the leg splints so she doesn't need them if someone holds her knees straight and you can feel those muscles working. She transitions from her inchworm crawl to getting on knees, lifting one leg off the ground while doing so. She must be trying to get from crawl to sit. Whatever her pt practices with her, she takes the initiative to do her homework. I better enjoy that while it lasts...
Paul, Phoebe and Calib saw Santa already at Pop Joe and MomMom Char's church. It was a nice turnout and they had a craft table. The kids were more interested in drawing with markers and chasing each other up and down the hallway. Paul's talking to Phoebe's pt on his toy phone right now, so I better type quietly.
Thursday, December 6, 2007
Wednesday, October 3, 2007
Phoebe's cutting her first tooth!
Woohoo, Phoebe! One of her bottom teeth is cutting through and you could hear it tink against her spoon this morning!
Tuesday, October 2, 2007
A link I forgot to mention
If you have some time to send care packages to our troops on a monthly basis and write letters, nothing depressing, on a weekly basis, then visit www.soldiersangels.org. You fill out a short form, someone emails you back with some info on an individual soldier and go on from there.
One point this group makes is not to expect your soldier to be able to write back. There are some items you're encouraged NOT to send ever or at certain times of the year, but I signed up in July and have received some letters from my soldier. I will tell you that the soldiers who sign up could definitely use items from back home because some of the places they're stationed simply don't get much without our help. And they are extremely grateful. Making a new friend is the best reason to get involved!
One point this group makes is not to expect your soldier to be able to write back. There are some items you're encouraged NOT to send ever or at certain times of the year, but I signed up in July and have received some letters from my soldier. I will tell you that the soldiers who sign up could definitely use items from back home because some of the places they're stationed simply don't get much without our help. And they are extremely grateful. Making a new friend is the best reason to get involved!
What Paul's been up to
Paul's doing what he loves most-playing with his cars. He holds some long conversations with them once Phoebe's down for her morning nap. Meanwhile, he'll help us sort laundry, feed Phoebe finger foods and her bottle, and have her chase him everywhere that's not blocked off. He just volunteered to do my errands for me then tells me, "don't drive me insane, Mommy." Isn't that my job though?
He's taking gymnastics once a week for an hour at a time. The group's 2 1/2 to 3yr olds, 3 girls, 3 boys, and let's just say that Paul loves to draw attention to himself. He does somersaults pretty well but we just have to keep him from doing them off of the sofa at home! The instructor motivates them with stamps if they do well following directions that day. If Miss Lee asks Paul to imagine eating something or act like an animal, his thoughts are about eating cars and acting like a cat.
He likes to do some coloring, but it takes some pushing to have him draw shapes. He'd rather I watch him draw than do it on his own and show it to me afterward.
I think Paul's finally convinced that Phoebe's girly ride on toy isn't as cool as the red tricycle he got for his birthday. Until he gets frustrated with pedaling over the deck floor.
Aside from having a 24hr bug that knocked him out for a day last week, he's been doing great.
He's taking gymnastics once a week for an hour at a time. The group's 2 1/2 to 3yr olds, 3 girls, 3 boys, and let's just say that Paul loves to draw attention to himself. He does somersaults pretty well but we just have to keep him from doing them off of the sofa at home! The instructor motivates them with stamps if they do well following directions that day. If Miss Lee asks Paul to imagine eating something or act like an animal, his thoughts are about eating cars and acting like a cat.
He likes to do some coloring, but it takes some pushing to have him draw shapes. He'd rather I watch him draw than do it on his own and show it to me afterward.
I think Paul's finally convinced that Phoebe's girly ride on toy isn't as cool as the red tricycle he got for his birthday. Until he gets frustrated with pedaling over the deck floor.
Aside from having a 24hr bug that knocked him out for a day last week, he's been doing great.
Sunday, September 30, 2007
Links and more specific diagnosis
The support group that has been a tremendous help to us, amcsupport.org, is now a 501c3. Well, any contributions to them is now tax deductible. That means so many more opportunities for the group, its board of directors, and members. Since amcsupport.org is national, it takes money for families to travel to the conventions. A new set of casts or surgery can put a family back thousands of bucks.
Having an online group is one thing, but meeting leading experts in the nation for a one on one consultation, no charge, is an entirely different story.
We liked the care Phoebe received and felt confident in the fact that she was seen at a prestigious hospital. Once the convention began and families exchanged what they learned from those treating their children, in addition to what the pt and ot from Houston's Children's Hospital prescribed, we realized we needed a different approach to Phoebe's care, a team of professionals at one location. We're now regular visitors to the duPont hospital and are seeing much faster progress because there's simply more experience there dealing with Phoebe's condition. She was just diagnosed with a mild form of amyoplasia, which translates into a lack of muscle. She does have muscles, only weakened quads. Her hemangioma, or red spot on her forehead that's fading, her limbs are affected in a symmetrical pattern, elbows slightly stiff, both knees stuck in flexion in utero, the bilateral clubfeet, another indication of amyoplasia.
Her prognosis is good considering, and we're relieved that no other organs are involved. Her mind is sharp and her talent at getting Paul into trouble is scary.
Having an online group is one thing, but meeting leading experts in the nation for a one on one consultation, no charge, is an entirely different story.
We liked the care Phoebe received and felt confident in the fact that she was seen at a prestigious hospital. Once the convention began and families exchanged what they learned from those treating their children, in addition to what the pt and ot from Houston's Children's Hospital prescribed, we realized we needed a different approach to Phoebe's care, a team of professionals at one location. We're now regular visitors to the duPont hospital and are seeing much faster progress because there's simply more experience there dealing with Phoebe's condition. She was just diagnosed with a mild form of amyoplasia, which translates into a lack of muscle. She does have muscles, only weakened quads. Her hemangioma, or red spot on her forehead that's fading, her limbs are affected in a symmetrical pattern, elbows slightly stiff, both knees stuck in flexion in utero, the bilateral clubfeet, another indication of amyoplasia.
Her prognosis is good considering, and we're relieved that no other organs are involved. Her mind is sharp and her talent at getting Paul into trouble is scary.
Phoebe's stance on standing...
Phoebe has a stander that she's supposed to be strapped in for however long she tolerates it. The thing is , she screams as soon as we strap her in! Since she has 2 physical therapists with 2 different opinions, 1 for the stander and 1 for just plain standing, supported by a table and our hands, we've opted for just plain standing her up with her knee and ankle splints and shoes with foam inserts, supporting her bottom, and she'll do the rest.
The latest standing aid we received at duPont is the "magic pillowcase." The closed end has 2 holes for her legs. We put legs through, gather the fabric in our hands and lift one side at a time, and she's walking! As long as she's in a good mood to begin with, she'll tolerate her standing as long as 10 minutes at a time.
The latest standing aid we received at duPont is the "magic pillowcase." The closed end has 2 holes for her legs. We put legs through, gather the fabric in our hands and lift one side at a time, and she's walking! As long as she's in a good mood to begin with, she'll tolerate her standing as long as 10 minutes at a time.
Thursday, August 23, 2007
Phoebe Standing!
Here are some pictures of Phoebe standing in her splints at the play table she got for her first birthday.
Monday, July 23, 2007
Welcome
Hi there! Since things are getting pretty busy around here, Chris and I thought it was time to start blogging! Sure, we could keep sending a bunch of long emails detailing our recent trip to Texas, what we learned at the AMC convention, and Phoebe and Paul's activities, but now you won't have to wait. We can't guarantee daily entries but I'll try to post things of significance every week at least. I think Chris is already sending out invitations to our new little spot. Anyone here who blogs and is willing to share his/her link, please let us know.
Looking for recent pics of the kids? Please be patient.
Looking for recent pics of the kids? Please be patient.
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