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Having a child with a disability totally changed our lives. Coming home from the NICU with a fragile baby with lots of therapy in the future meant that I could no longer keep my graphic design job in Seattle. It meant becoming a stay at home mom. In the wake, I opened up first my sewing shop on Etsy and later my fabric shop (both on Etsy and now a stand alone shop). I would really love to put together a list of other shops/services of parents (or whomever) of disabled kids. So, if you have one or know of one, please put a link in the comments and I"ll get a list put together sort of like my Other Cool Kids blog list.This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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This poor little blog has been gathering dust as life has seriously been hurtling by, faster than ever.
I registered Darsie for kindergarten today.
I can"t believe that my teeny tiny 1lb. 12oz. little baby girl will be going to kindergarten next year. Amazing.
She is doing amazingly well. We"re still having issues with her foot turning in. As I last reported, the second round of Botox did almost nothing. We followed with a round of serial casting and while that did help, it was short lived. We"re currently waiting on a prescription of Baclofan to get authorized (week three...fun!) to give it a shot.
As for the other kids, Elise just turned three and "graduated" from Early Intervention. She had some sensory issues due to her premature birth and while we still can see signs of them (toe walking, etc.) she is doing soooo well and her speech is out of this world. Darsie didn"t really talk until she was three and Elise is a jibber jabber nonstop. Amazing how much an additional five weeks of womb time can do for a wee babe.
Robert just turned six months old yesterday. He is rolling front and back, pivoting, and devours apple sauce and rice crackers. Sweetest little baby boy with the gooiest grins. We love him to pieces.
I"m going to try to do a better job at keeping this blog updated. I"ve received a couple of emails in the last few days about people who are just getting into the whole CP treatment range and I really |
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| Answers to your questions... |
We"ve been out sick since Valentine"s Day and now all three kids are sick with a coughing viral infection. Darsie also got her finger stuck in a door at school and suffered a compound fracture and needed five stitches. She is healing well and it looks like her finger nail will grow again (the white part where the finger nail grows from was completely unattached which led everyone to worry that she would be unable to grow a nail again).
I have been trying to answer some of the questions and give replies in the comments/email.
Updates on Darsie. We went back to her rehab doctor (the one who has done her Botox in the past). We had pretty good success with this last round of serial casting but even he agrees that the Botox was pretty much ineffective. He wrote her a prescription for Baclofen but then she had her injury and I didn"t want to mix antibiotics with the Baclofen. I"m still hesitant about the Baclofen but we are going to give it a shot.This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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Darsie was supposed to go in for recasting today. But once her cast was sawed off, there was a little bit of foot fungus so we are treating that before recasting. She had this the last time we did serial casting as well, so I"m wondering if the DAFO combined with the sock constantly and sweating creates a damp sort of environment or if it just a result of serial casting. Anybody with any experience?This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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Unfortunately, the Botox hasn"t been nearly as effective as it was the first round. We are pretty bummed about it but trying to remain hopeful. In an effort to really make the most of it, Darsie"s foot is being serial casted tomorrow. In the first round of Botox, we saw huge improvement immediately and even more after the serial casting. So, fingers crossed that the casting is what we need to really take the Botox to the right level for her. I know that kids grow "immune" to the Botox, but after just one round?
Anyways...for a bit of cheeriness, a video of the Great Bertowski...
Have a great evening everybody! I will be back soon with an update on the serial casting. Please keep your fingers crossed that it helps!This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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I hope everyone is surviving this cold blast. In Washington, it is unseasonably warm but (as expected) very wet.
This week we had a check up with the rehab med doc to see how Darsie"s Botox injections were performing. The muscles are all loose (yay!) but because of their memory, they are still pulling her foot inwards. So, he wants our PT to proceed with serial casting. We had good luck with the serial casting during the last round of Botox, but we still have to decide if we want to do it again. It definitely complicates life for all of us. However, I do want to take 100% advantage of the Botox.
Bert turned two months! Isn"t it amazing how fast time flies? He is such a BOY, too. I look at photos of other babies the same age and he just seems older. I was reading a blog post about a family that got stuck at someone"s house due to a snow storm and they had to put her in a size 3 diaper (same age as Bert by a few days) and I just laughed. Bert is officially in size 3 diapers. I don"t know if it is because he is a big boy (appointment next week) or just because he is a big-time blower-out of diapers.
Jeff turned 33! We spread his birthday celebration from morning "til night and I have a special adventure planned on Saturday. As well, we have a birthday dinner with his family on Sunday. Nothing like a week long celebration, right? I think we all deserve it.
And last, Bert has now started rolling from tummy to back! My baby really is growing |
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Sorry to leave you all hanging again. I"ve been taking life slow and easy, napping a lot, enjoying family and friends, and eating lots of ice cream. We had a fantastic Christmas and I was thoroughly spoiled by everyone and feel like such a princess. Darsie also had another round of Botox in December so we"ve been working on that as well as I"m trying to develop goals and ideas for the Small Grapes shop for 2010.
2009 was awesome in so many ways but I"m REALLY looking forward to 2010. The last part of this year has been awesome with Bert"s birth but I"m so ready to leave behind the health issues and stress that culminated towards the end.
A couple of "goals" are to make new friends and foster deeper relationships with the ones I have. I also want to learn to knit. And make Small Grapes a successful and fruitful fabric business. But mainly I want to enjoy and love my family as much as possible. Fruity and cheesy I know, but so true!
I should probably add "be a better blogger" to the list, huh?This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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Monday I went in for an amnio (and was stuck three times, ouch). The results came back early that afternoon that Bert"s lungs are mature and we are good to go. So, tomorrow at noon is the grand opening. I"ll update at some point but please, if you don"t mind, think good thoughts for us.
It is totally shocking and amazing to think that tomorrow I"ll be mom to three. The world is great.This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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| Starting to think I"ll go alllll the way |
Just a quick update on us, but I"m 35 weeks pregnant today and holding steady! I"m now going in for twice a week NSTs and Bert has been behaving beautifully! I"m not starting to think I"ll make my November 4th c-section date! Bert has a car seat, a bed, and some clothing, guess it is time to start filling in the blanks.This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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| Had another positive appointment today! |
Had a regular OB appointment today and an NST. Everything went great, no hiccups. I even (finally) scheduled my c-section for November 4th. Crazy how fast this pregnancy has gone. I"ve been so nearsighted on making the big 28-week and 33-week milestones that it has just flown by.
I am loving the fall weather and am hoping and thinking of lots of soup and good sourdough bread slathered with a salty butter. And peanut M&Ms. And dreaming of an extra hot latte with tons of creamy foam. Mmmmmmm. I haven"t had any coffee for a long time and have even held decaf coffee at bay since everytime I"ve had some, it has messed with my blood pressure. So, coffee and wine are definitely on my to-do list.This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.http://creativecommons.org/licenses/by-nc-nd/2.5/
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