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Cerebral Palsy Baby





Updated: 2017-11-14T07:16:09.931-08:00

 



One Year Post Surgery

2013-04-23T11:39:22.915-07:00

Holy moly, time simply flies when kids get older and their needs change and their activity lists grow.

Last week, we took the whole family down for a trip to Portland for Darsie's one year follow up post surgery. Since we had to be there at 8am, we decided to head down the night before instead of getting up at 4am to drive down. The kids loved staying at a hotel with a buffet breakfast (what is it with kids and buffets? They go HOG WILD) and it was definitely nice to be close to Shriners instead of a long drive away. While Darsie and I went to Shriners, Jeff took the littles to the zoo. For anyone heading to Portland, there is a baby elephant and an otter right now. They all loved it.

At Shriners, we did our post year surgery study paperwork and then headed up to the Motion Lab for a gait analysis. They hooked her up to all these little balls and had her walk and recorded her with a camera. Think special effects for movies sort of thing.


Afterwards, we went to see her surgeon. They are super pleased with how she is doing, so much so, that she is graduating to a new AFO. She was casted for a leaf spring AFO instead of the solid heavy one she has been in for the past year and a half. It worked great for allowing her foot and leg to heal but now its time to to get her leg to develop and work. She still has a bit of a toe drop and knee extension, so this style of brace seems to be a good fit for her.

We finally headed home about 2pm and everyone was exhausted, barely making it through lunch before crashing hard in the car.




Somebody is 8....

2012-09-19T17:14:17.694-07:00


From Tiny to Mighty!!! Happy 8th birthday, Darsie!



A Little Accommodation can go a Long Way

2012-07-31T13:26:51.557-07:00

Darsie will be going into the second grade in September and one of her areas of struggle is organization of her things. So, with a little crafting, I sewed up this pencil pouch JUST for her pencils and erasers. Should help her keep those things close at hand at the very least. At her request, I put in a thumb loop (only one, by her direction, though. Believe me, I asked about two). She is enamored.




Cast is Off!

2012-05-09T14:54:50.141-07:00

On Monday, we headed to Shriner's in Portland again for Darsie's cast to get taken off. The cast came off with no problem but there was a "button" on the bottom of her foot that had to be removed that held the sutures from holding the tendon in the correct place (I think!). She was not a happy camper during that.

After her cast was removed, Darsie was very upset about her foot looked (although I could tell the position of her foot was 100% better immediately). I don't think I prepared her enough for the incisions that would be very visible. Anyways, we headed up immediately to the Orthotics office and George, our favorite Orthotist, helped her with her brace that she was casted for while she was in the OR. Her sad little face almost made George cry. But amazingly, once her orthotic was on, she was smiling and happy again.

Back downstairs to see her Orthopedist who thought her foot looked FANTASTIC. And I have to agree. She is walking heel to toe now, although very slow.

I hope to upload a video soon, but I just wanted to let everyone know that her surgery appears to be a huge success. We are looking to start PT soon to keep her range of motion and build strength, but things are going great.



Recovery

2012-04-06T10:29:32.361-07:00

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After getting the results from the motion lab analysis, D's ortho at Shriners, Portland, thought it would be best to perform an anterior tibialis tendon transfer, a posterior tibialis tendon lengthening, and an achilles tendon lengthening. There was some talk about doing a femur osteotomy as she has some leg rotation originating from her femur but as it is a much more intensive surgery, we decided to hold off on that one for another year or so, if she will even need it.

On Tuesday, D was admitted at Shriners for the tendon surgeries. The surgery lasted about two hours and her ortho said that she got really great correction when she released the anterior tibialis. D spent a night at Shriners and we were able to bring her home on Thursday (it was a pretty grueling three hour drive for her, but she did really well). She is in a short cast to her knee for the next month and a knee/leg brace over that for the next few days.

Recovery so far has been ok. We are still keeping up on the regular schedule with her pain medication and she is apprehensive of too much movement but she is starting to sit up in her wheel chair for longer periods of time and wanting to do things. Lying on the couch watching tv is getting old, I think! I'm hoping she will start transitioning to using her walker around the house soon, but we have to get her over the anxiety of pain issue first.





Shriner's Visit #2

2012-02-10T15:14:49.124-08:00

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Yesterday, we trekked down to Portland with Darsie for her second visit with the fantastic staff at Shriners Hospital, Portland.

Our first stop was with George, the orthotist that Darsie picked during our last visit from a photo on the wall. He is simply awesome with her. He made many, many adjustments (including an entirely new strap system) to her new AFO to make sure that it was the proper fit and comfortable to her, too. Turns out, he wears DAFOs, so he is well-versed in anything orthotic related.

Her second appointment was in the Motion Analysis Lab with Rosemarie and Bob. They performed all sorts of walking exercises with videos, sensors, and electrodes. At one point, Darsie probably had 50 sensors and electrodes all over her body all wired into a backpack that was then hardwired to a computer. She was given a comprehensive strength and range of motion analysis. Also, a pressure analysis of her gait as well as photos of her standing from all sides and even from underneath!

After a short break, we went and saw a speech therapist for an eval. No speech therapy recommend! So, that was awesome.She gave us some things to work on, but she was very impressed with Darsie.

After that, we had a group meeting with two physical therapists and two occupational therapist. Lots of exercises and walking and climbing ensued. I was most impressed with Darsie figuring out how to bead with her right hand but more so, that she could pick up tiny plastic beads and drop them into a vanilla bottle with her right hand. She is awesome!

Now we wait for the professionals to look at the huge amounts of data and information that was collected and meet to form an action plan for D.

I continue to be so very impressed with Shriners Hospital, Portland. First and foremost is that their doctors, therapists, and staff TRULY care about helping children and are passionate and kind and loving. Also, the process is so fluid at Shriner's. Professionals meet with other professionals and together they formulate plans and theories and ideas. Normally care is so disjointed because different organizations are in charge of different aspects of care. I have the utmost confidence in Shriners.



6 Month Update

2012-01-20T10:56:03.014-08:00

Wow, six months since my last post? Just a little ridiculous, huh?

Darsie has been up to so much since then, but mainly starting first grade! It has definitely had its trials and tribulations but I think we are finally in a good spot and progressing well. Her last report card had ups and downs but the main items were that she is reading and doing math AT grade level. So, BIG CELEBRATION!

We recently had a consultation at Shriner's in Portland. Just as we thought, it was recommended that Darsie have surgery on her foot. Botox isn't really doing enough for her at this point and we want to get her foot corrected before more permanent damage is done. She was also casted for a new AFO. She has a hinged DAFO but the Orthopedist at Shriner's thinks she needs more support that an AFO will offer. We go back in February for a day-long appointment with their Motion Lab, Orthotics, Speech, Physical Therapy, and Occupational Therapy Departments. Whew! It makes me tired to even type that out!

We have recently started the process in matching Darsie with a service dog through CCI.org. We think she would benefit greatly from it, especially after talking to lots of other Hemi parents. We had to submit basically an application request application in order to complete a full application. Earlier this week, we received that full application so we are putting it all together to move forward further in the process!

We were hit pretty hard with an epic historical storm this week. Darsie loved the snow and sledding. She is quite the daredevil.
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The Cohesion Project

2011-07-01T16:07:31.679-07:00

Take a look at this video and please think about donating to make it a reality. It is time that the world realizes that cerebral palsy isn't the end of a life. I know so many people with different levels of cerebral palsy, all who are wonderful and worth taking the time to get to know. It's time to encourage people to look beyond the labels.

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IEP Time

2011-06-03T08:11:46.753-07:00

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The girls are sporting new hair these days, but this is a somewhat recent photo.

Yesterday I met with the therapists and principal at Darsie's school and had her annual IEP meeting. According to them and their testing, she is doing so, so well. She is hopping on her left foot very well and is starting to hop on her right as well. She is walking with alternating feet up a lot of stairs. Her writing has improved. And she can do 1" buttons! Things to work on for the summer are writing, buttons, and zippers. We can do that! Jeff and I have definitely noticed an increased use of her right hand as well.

Looking into the next year and what modifications she will need are perhaps modifications in PE as well as extra time to finish written assignments as she is a slow writer.

I love my girl and she is such a joy. She strives so much to be independent and successful at whatever she chooses.



Proud Mama

2011-05-10T12:13:39.780-07:00

I know I'm about a gazillion years late on tons of things but I just wanted to check in and update everyone on Darsie's latest round of Botox and serial casting. It has been very successful, which is sooooo good.

Things are progressing in the school department. For Mother's Day, the class put together a cook book of their moms' best dish. They dictated their recipe to a classroom helper and they were compiled into a book that was sent home.

Here was Darsie's:

Chinese Food
By Darsie

Chicken
Sauce
Oil
Spices
Rice
Egg Rolls

My mom makes the best Chinese food. First, she puts the chicken in the pot and then she pours the sauce on it. Oil and spicy stuff go in. She cooks it until dinnertime. Then she cooks the rice in a boiling pot. And that cook until its dinnertime. And then puts the egg rolls on and cooks them and then we eat!

I was soooo incredibly proud of her because, and honestly I know I'm biased but I truly believe this, it was the most thorough and well organized recipe out of the bunch. And she didn't choose macaroni and cheese (which we do eat plenty of).



Serial Casting & School Updates/Questions

2011-04-11T14:52:36.201-07:00

Darsie is now sporting a purple serial cast. Her PT put it on last Friday and this week it will be removed and we'll see how she has progressed. With her other rounds of serial casting post-Botox, she has always had a minimum of two castings but upwards of four. The last time was the shortest with just two castings due to skin breakdown. This time, as a preventative measure, I applied athlete foot creme to her foot the morning of her casting. It will be interesting to see if that has any change to the duration that she can be casted for. I just want to remember to bring the creme with us on Friday to give her a quick rubdown before a new cast is applied. It is worth the shot at least.

She just had two weeks off of school due to conferences and Spring break. Her conference went well but there still seems to be a disconnect at school as to what she is actually capable of and what she is given credit for knowing. I know that Jeff and I have seen astounding progress and we were hoping to hear about that progress and what we hears was that she is not at the level that they like kids to be at at this point in the year. I won't go in to it too much here because I'm not sure who reads this blog and while I'm feeling disgruntled about her school experience, she loves school, she is progressing, and she is happy. To me at least, that is what matters.



Updates and some Botox

2011-03-29T12:23:17.295-07:00

An update to the recent placard post I wrote is that I talked about it with Darsie and she is VERY opposed to it for some reason. I don't know if she has been hearing things at school (she said to Bert one day in a very loving tone "You're disabled, you are disabled") or what is happening, but she does not want one. I think at this point in her young life all she wants is to fit in and be similar. I know right now she is really struggling with being pulled out of class for OT and PT (she actually yelled at the OT one day because the class was going to have cupcakes for St. Paddies Day and she thought she was going to miss them) and she doesn't want to seem so different.

Darsie also went on a play date/party date to a friend's house and it was a success. We are working on setting up some more soon.

Darsie also had a fourth round of Botox last week. I'm not sure if we will follow it up with the serial casting that we have done in the past, but I wouldn't be surprised. She responds really well to that combo. I do recommend that for anybody contemplating Botox, talk to your doctor about giving your child Versed before the IV and the Propanol. At least it is a combo that works well with Darsie.

We are on Spring Break for the next two weeks and of course Darsie is sick. So, today is a Mac-n-Cheese/couch/movie sort of day. Hopefully brighter weather and moods is just around the bend.



A Volatile Post, Perhaps?

2011-03-02T09:20:01.628-08:00

First off, I wanted to thank everyone for your thoughts and recommendations on my last post about Darsie and making friends. We've made some great strides in the last week and hopefully it will continue.

I have a topic I've been thinking about for awhile and am hoping to get other parents/people to contribute on - handicap parking placards.

Darsie is very able. But walking does wear her out more so than typical people. And she walks slowly. According to the Washington State web site on the matter, I do believe that she would qualify - Your ability to walk is severely limited due to an arthritic, neurological, or orthopedic condition.

I know that it would make our lives so much easier. But then I get to thinking, would it make Darsie's life easier or just mine? I'm thinking of shorter jaunts across parking lots with the three kids and being closer to our destinations. I think about all the people that use placards that don't "appear" to need one (although, as with Darsie, not all conditions are visible). I know that she doesn't really need one and so for the time being, we've held off on applying for one.

And as I say that, I know that if and when it would really benefit her, we'll be the first ones in line for a placard.



On Making Friends & Mean Girls

2011-02-24T08:54:39.770-08:00

I love that the internet brings together people of all experiences, lives, and circumstances into one big mosh pit of vegetable soup. And boy, oh, boy, do I need that mosh pit right now.

This is going to sound corny and cheesy and odd, but I want to help Darsie make some friends. She has her casual acquaintances but no girlfriends to come over and play, no consistent friends besides her sister and brother.

I also am noticing that kids are starting to realize that Darsie is different. And not that they are mean or tease her, but she is starting to get excluded. I volunteer in Darsie's class every Wednesday and the little girls in the class were all abuzz over an upcoming birthday party for this weekend with A Princess for a Day theme. It seems the majority of the girls in the class were invited, but not Darsie. It appears that Darsie doesn't realize it, but who knows.

I've also been witnessing a lot of little girl cruelty. They are all about clubs and best friends. Luckily, they are also fickle and change best friends (and boy friends!) on a seemingly weekly basis. I did overhear a girl telling the girl that Darsie is friends with, that if she was friends with Darsie, that she wouldn't be friends with her anymore. Where do they get this behavior? Their parents? Their siblings?

Beyond setting up a play date with the little girl that Darsie levitates to in class, how would you go about facilitating positive friendships for a young girl?



School Cononundrums

2011-02-16T08:30:15.035-08:00

Darsie loves kindergarten. She goes to our local public school and it is a great place. The principal is fantastic, the kids seem happy. But I have a big problem with it which I didn't see as a problem early on. It is a three hour program. And in a class with upwards of 18 kids, three hours a day isn't a lot of time to learn the basics.

Since the start, we've been given updates on Darsie's progress and it has always been dismal. We were told she didn't know numbers, she didn't know letters, she didn't know sounds.

At home, she does know these things. And I made sure going into kindergarten, that she was prepared. I read the kindergarten brochure and the things they said kids needed to know going into kindergarten, she was on top of. Besides tying her shoes.

Recently, Darsie joined an extended kindergarten program. She goes an extra hour every day just for a reading class. They use a zoo-phonics program to teach them the sounds of the letters. And I've actually noticed that it has given Darsie a lot more confidence.

But she is having problems connecting those sounds and also sounding out words. I would imagine that a phonics program of some nature would help this, but I'm not a teacher. Just a mama that wants the best for her girl.

We've upped our reading time here at home and we spend time perusing Starfall.com every day to work on phonics.

I don't know if it that her kindergarten time is so limited and the teacher so maxed out, if it because of Darsie's brain bleed (it was in the language part of her brain), or if it is just a timing thing.

I just hate to see her frustrated and I know, to my core, that once she can read, she will be the over-the-moon reader who never puts books down.

I want to open that world up for her. So, if anybody has any advice, I'd love to hear it.



Time for an Update, Perhaps?

2011-02-09T10:58:10.391-08:00

Egads, life gets crazy and the blog gets super dusty. But, I figure I can update at least every six months or so, I hope!

Anyways.....Darsie started kindergarten and has been doing fairly well. She does great with math and patterns but reading has been more of a problem than I anticipated. The school finally started an extended kindergarten program which gives her an extra hour with a different teacher and only nine other students (the extra hour means that she has 4 hours instead of 3). They use a zoo phonics program and since Darsie LOVES animals, it has really clicked with her. She has made tons of progress.

In July, she had a round of Botox which has been hugely successful. We're in the process of getting another round scheduled for her though as her foot is starting to turn in and under again. It is such a bummer that it doesn't last longer but I am SO THRILLED with the six plus months that we got from the last round.

The other kids are doing great as well. Elise is in preschool and thriving. She loves lady bugs and princesses. Bert is now 15 months old and walking up a storm. He loves destroying things and terrorizing his sisters and ME! We are a traveling circus.



Serial Casting - Cast One

2010-08-16T07:37:55.660-07:00

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?

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Ortho, Botox - An Update

2010-07-15T08:17:20.386-07:00

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....

2010-06-10T09:56:31.096-07:00

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

2010-06-05T15:57:13.777-07:00

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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!

2010-05-28T17:06:51.120-07:00

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

2010-05-18T12:29:24.100-07:00

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

2010-05-12T11:09:20.859-07:00

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...

2010-05-06T12:18:29.425-07:00

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

2010-05-05T15:04:01.517-07:00

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.