Serial Casting - Cast One

Monday found us at the PT to get Darsie serial casted (third time, round one). In bad news, there was still some tightness in her foot, but in good news, her PT felt that it was mainly soft tissue and not muscular. He said we would be able to tell if the Botox had done its thing better once this cast comes off.

She has experienced some uncomfortableness this go around, mainly in the form of itchiness, that she hasn't in the past, but she is trooping through.

This time she picked a pretty pale pink cast. I think this and the red have been my favorites so far. Last night we also decided to "applique" it. Cute, huh?

Ortho, Botox - An Update

Oh my goodness, how has a month flown by? I'm just not getting into a rhythm this summer and time is seriously slipping by like crazy. Seriously, how are we in JULY. MID-July at that???

Anyways, we went and saw an Orthopedist at MaryBridge Hospital a couple of weeks ago about D's foot. He said that he could fix her with surgery but really would prefer to wait since she is only five. He said that since she was so young, if he did the surgery now, it would almost definitely need to be repeated. So, he really encouraged us to try another round of Botox. It took us a bit to come to terms with that since the last round of Botox was so ineffective for Darsie and the procedure was traumatizing and painful (they just used a small dose of Versed).

Anyways, yesterday found us back at MaryBridge for Botox. This time she was given a larger dose of Versed and they were finally able to find a vein for a light sedative. The last thing she remembers is playing on the iPod and waking up. Yay!

Now we just wait to see the effects. If you could keep your fingers crossed over the next couple of days, we would appreciate it SO much!

Serial casting to begin on Monday.

Back to School....

Well, it is true. Darsie really IS going to kindergarten next year (not that I had any doubts, but you know). We went to her IEP meeting yesterday and she has made soooo much progress this past year and her teacher said that Darsie is DEFINITELY ready for kindergarten. Yay, yay, yay!

She will continue to receive OT and PT at school but has officially been released from Speech now. I can't even believe it as at three years old, she barely talked!

The only "accommodation" that she will be receiving outside of the therapies above is that she will continue to ride the little bus to school. I'm over the moon happy about this as the bus drop off is on a very busy street with lots of kids. The worry of her team was that the steps up and off of the bus are very tall and this area has no curbs and a steep drop off. And also that because of the throng of kids getting on and off, that she would get hurried and off balance and fall. And besides, who can resist door to door pickup and drop off?

That being said, watch, she will want to ride the big bus come the school year.

Happy Five Years

Another year, another anniversary. Five years of wedded (mostly) bliss. It's been a crazy five years of marriage and I'm hoping for many, many more. Less crazy, more bliss, though, please.

Moving on Up!

There is an official kindergartner in the house. Holy Moly. I have the official meeting next week but developmental preschool ended yesterday.Per Darsie's request, we celebrated at McDonald's.

Baclofan

I'm hiding in the office pounding circus animal cookies like never seen before while I listen to my girls play in their room and keeping an eye out for Darsie's bus.

Anyways, Darsie took her first dose of Baclofan last night and I'm really, really hoping that it helps her. We're starting out small (just 4mg once a day for a week and then we'll add a second dose, and a third dose the following week) but fingers crossed for improvements with minimal side effects.

Call for Shops

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.

Pure Craziness...

Yesterday, Elise took a big bite out of a jalapeno and then rubbed it in her eyes.

Today, I've caught her sneaking mini Oreos a handful of times.

Darsie soaked her tshirt just as the bus was coming up the driveway.

Somebody drew all over their baby brother.

Darsie packed her own lunch for school...which also means that an entire box of Uncrustables (Yes, I'm one of THOSE parents) has been scattered to the ends of the earth, or at least strewn throughout the house.

And somehow, the house that was clean last night when we went to bed is now trashed.

Life with three children. I wouldn't trade it for the world but man, can it be crazy at times!

Oh, and I just found Elise digging around in a potted plant with a pencil....

Some Updates

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 do want to give our experiences a voice to others. If you ever have ANY questions or just need to talk, please don't hesitate to contact me.

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.

Bert is 4 months!!

Life has been crazy hectic busy and I just haven't felt like blogging, so sorry for the absence!

Darsie did really well with the serial casting. We ended up going...three rounds, I think. Her foot still turns in a little but it is SO EASY to get her positioned correctly in her DAFO now, that I am calling it a success.

Update on Serial Casting

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?

Serial Casting Tomorrow

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!

A Busy Week

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 up!

All remains well with Elise and me, too. Just nothing new to report!