Thursday, March 8, 2012

{Seasons, Seizures and Ugly Shoes}

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Today in the northeast the weather is beautiful -- the nicest day so far this year, just maybe a hint that spring should soon be on it's way.  I just love that I keep here that phrase -- spring is coming.  It is a powerful statement that particularly hits my soul just right.  If you recall it was that very phrase that brought me through the darkest hours of grief during the days and months following our son Gavin's death.

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I held so tight to the idea that times in our lives where we feel total confusion and maybe even deep pain and sorrow, can be likened to that of winter.  The most amazing part of winter is that below the cold frozen ground, new life is just waiting to come to the surface and give new hope and joy -- Spring always comes.  God knew we needed seasons.  We as a flawed humanity always need a reminder that we are weak -- that we have no choice but rely on the grace of God.  Winter seems to remind us all of that.  When hints of spring are in view people get excited -- we get happy again with a renewed sense of hope!

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Today we opened the windows and went out on the deck and enjoyed this beautiful weather.  The past few days we have been on an appointment marathon for the two little ones.  Yesterday we finally were able to meet with Angela's neurology team and came up with another change in medication to try and stop these ugly Complex Partial Seizures.  The increase in Keppra seems to have worked but we still see them every once in awhile so we are taking one more dose increase to see if we can stop them all together.  The team also ordered a sleep study to make sure she is not obstructing at night, as she has been known to drop her O2 levels, lots of snoring and frequent waking up.  This can contribute to seizures -- so we are covering all grounds.

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After stopping antibiotics for a few days Angela's sinus infection from hell came back.  Poor girl.  She wakes up in an inch thick pool of green goo every morning and it just not fun for any of us.  So back on antibiotics she went.  Fingers are crossed that this one kills the bad bugs.

Yesterday we also picked up Jayden's new monster braces.  Actually, they are skateboarders with black straps, but they are monstrous in size.  This is my first experience with hinged braces.  Angela has always worn a full molded ankle foot orthotics, but we have never done hinges.  This makes the back of the brace double thick and much wider.  I'm a sucker for fashion and almost had a mental breakdown trying to find Jayden a nice pair of shoes that fit our personal style.

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I am well aware of all the special shoes everyone keeps tell me about -- I totally appreciate it, but they are just not our style.  It makes me so frustrated that children with disabilities have to suffer in the fashion sense.  Every child deserve the chance to go into a store and find a cute pair of shoes.  I know lots of tricks for altering shoes so they fit braces, but you have to realize how wide Jayden's feet are to begin with -- then add a brace and they are like double double double wide.  Poor kid.  We did get a pair of Crocs, as I've had great luck with them in the past.  They are very tight, even at 3 sizes to big but they seem to be stretching out today.  

Don't worry, I'll get over it.  No mean emails or comments.  I fully realize that looks are not everything.

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Tomorrow we were invited to a special VIP performance given by the Harlem Globetrotters for the kids and families who attended Camp Erin last year.  This was a camp for grieving children -- totally amazing.  We are very honored to have this opportunity to take Madison to see this fun show.  Can't wait!

11 comments:

Kyla said...

I think those shoes are ADORABLE!

N and Z Mom said...

N's next set of braces are likely to be hinged as well and I am dreading finding shoes for him! His feet are so very tiny when not in braces (size 2/3 at almost 22 months) so I know it is not going to be easy.

You may have already heard this info but I will throw it out there just in case. Payless sells wide kids shoes (if you can't find in the store online has a bigger selection) and I've also heard that New Balance is pretty good for wide shoes, particularly good if you can find a New Balance store itself.

Karen Owens said...

@N and Z Mom -- that's how Angela's feet are. She wears a 5 at 3.5 years old. If you child already has narrow feet then it shouldn't be too bad finding a shoe. It's the hinge part that makes it very difficult!!

Karen Owens said...

@N and Z Mom -- that's how Angela's feet are. She wears a 5 at 3.5 years old. If you child already has narrow feet then it shouldn't be too bad finding a shoe. It's the hinge part that makes it very difficult!!

Anonymous said...

As a former teacher of special education I agree with you about the fashion. It is important. Your kids look so cute !

Francine said...

I hope you all have a great time at the Harlem Globtrotters show! That sounds like a lot of fun.

Abbey said...

Dude I totally hear you on fashion! I want my little men to look studly at all times. Just because they have disabilities doesnt mean they have to look unfashionable. I honestly dont understand why some kids with disabilities seem to dress so...ugly. I realize there can be texture/sensory issues, but even with that you can still find cool things. Okay, end rant.

Striderite has a lot of extra wides...

Phyllis said...

No judgement here! Your fashion sense in the face of special needs is truly inspiring!

Anonymous said...

My daughter wears a hinged brace. I order a whole bunch of styles from Zappos...free shipping...let her try them and send back what doesn't work. Brands to try, stride rite...comes in wide and TsukIhoshi...these don't come in wide, but run large...and they are stylish Japanese. We take the insole out for the brace to fit, use a shoehorn, and then they stretch.

Anonymous said...

Wow- thank you for the post!!!! I just picked up new hinged AFO's for my 5 year old.... right now he is wearing a pair of Adidas Samba Millennium in size 9child and they work... they run wide :o) I never thought to look at crocs- I will give it a try!

thank you again!!!

jocalyn said...

right there with you sister! when kendall had a hinged brace (last set) i too almost had a breakdown trying to find shoes. i ended up with chucks that were ginormous. she lived in crocs as well.
but all your babies (and you) always look stylish :) so i have no doubt you will find a way to accessorize those crocs!

good luck on the seizure meds. kendall has been on keppra for a very long time. i haven't minded because it doesn't take her personality away at all...though it does make her short tempered at times!