The Ashley Kids

Katie Walking!!

2012-01-29T16:02:00.001-05:00

Back from Katie's Make A Wish trip

2011-12-24T12:41:00.006-05:00

We are back from Katie's MAW trip to Give Kids the World. We had an awesome time! We were concerned that Jake wouldn't tolerate it with the long drive and the crowds at Disney but he did great (mostly LOL). Very few meltdowns (mostly waiting at the Disney Christmas parade at Mickey's Big Christmas Party, he's not much for having patience) Katie did great too.

We stayed at Give Kids the World, which if you've not heard of it, is just about the most awesomest place ever! LOL Seriously, if you are thinking of applying to Make A Wish, this is the wish you want! And if you are wanting a worthy place to donate to, please consider GKTW.

The houses are wheelchair accessible. They have a wheelchair accessible swimming pool and water play area. A merry-go-round with wheelchair tie downs. Accessible minigolf, train ride, playground (we could push Jake's wheelchair up and let him slide down to someone waiting for him). Horseback riding!!!! Free meals. And free ice cream all day long!!!!!!!!!!! Yes indeed, Mike and I both gained a bit of weight!! And I have a very "nice" picture of Megan downing her second package of dippin dots ice cream, as well as her surrounded by 2 bowls of ice cream and a milk shake a half hour later.... after the pool party cookout of hot dogs and hamburgers!! unfortunately, she also had a camera and has informed me that she has retaliation pictures of me should I decide to post the ones I have of her, so....

GKTW also have nightly parties. We had a Halloween party where the kids could dress up and trick or treat. A Christmas party. A birthday party. A pool party. Not sure what else there was as we were out late at Disney and universal a couple of night. There were costume characters from Disney and Universal in the mornings to meet the kids. They have nightly tuck ins from their own characters Mayor Clayton and Ms. Merry upon request. The kids also get gifts left for them at your house everyday. And when you leave you get a cd with all the pictures of your kids taken while you were there (they have photographers walking around during the parties, etc) And you also get a cd of pictures from Disney if you have your kids picture taken there with their characters. I think it usually costs $150, but you get it free.

My kids rode the merry-go-round there so many times I can't even count! And it was the first (and only) time they will ever ride a horse, which they really loved, especially Jake (Katie would have loved it too but she was having an off day and was having lots of absence seizures and was kinda spacey. She had 3 days like that. She still had fun, but the smiles were less frequent.

When you go to GKTW, you get tickets to the Disney parks (3 day passes), Universal (2 days), and SeaWorld (1 day). The kids really didn't care much for SeaWorld surprisingly. I thought they would like all the water but they weren't much for "shows". We didn't stay long there but were totally surprised (and HAPPY) to meet up with Elmo and friends on the way out. So I am glad we went. And I also got to touch a dolphin, so that was cool. Katie shoved her hand in a dolphins mouth while I was feeding it. Mike nearly had a panic attack at that! LOL

They both loved all of the rides. Of course Mike's back may never be the same from lifting Jake in and out of his chair into the rides so much. A lot of the rides did have wheelchair tie downs but we opted for transfer, but if we are ever able to go again to an amusement park, Jake will be too heavy. He's about 110 pounds right now. Megan and I rode everything with Katie and Mike rode with Jake. Katie LOVED LOVED LOVED the characters at Disney. No really... she LOVED them! she's a total Mickey Mouse fan now! In fact, the day after we got home, Mike took her to his dad's and she fell asleep in the van. When he stopped and open her door, she popped up and still half asleep started signing MOUSE and RIDE. I think she might have been dreaming about being at Disney!! LOL

So now we are planning on saving for a couple... (er several) years and go back to Disney. Of course it'll be nothing like being able to stay at GKTW! They made it so fun and easy. But I kow it'll be worth every dime to be able to take the kids back.

To all my sewing friends out there: if you are looking for an idea for sewing for a charity, Give Kids the World gives small pillows to every child and could use donations of pillowcases. I believe they have the info on their site, if not you can google Give Kids the World pillowcase pattern and it'll come up. I plan on sewing up a bunch and sending down to them myself.

I have WAY too many pictures to post. I'll post a few and then try to add a slide show.

Katie's Make A Wish Party

2011-12-13T08:36:00.005-05:00

Today I will spend ALL DAY packing. Just as soon as I get up from here... ain't feeling it just yet though LOL. We leave for Katie's trip to Give Kids the World/ Disney tomorrow. Yesterday MAW threw her a party at school.

Signing MOUSE

Disney Sewing

2011-12-11T17:42:00.010-05:00

We are getting ready for our Make A Wish trip to Give Kids the World and Disney, so of course I had to sew!

Katie reading sight words!

2011-12-10T14:07:00.002-05:00

Jake's Make A Wish

2011-12-01T08:14:00.003-05:00

Jake's Make A Wish wish was for a shopping spree (mainly to get a big screen tv) He doesn't really enjoy going places and wouldn't understand meeting someone famous, etc. He watches tv almost exclusively. He loves football, wrestling, bowling, and kids shows like Barney, Blues Clues, Jack's Big Music Show, Zoboomafoo, etc.

So he went on a shopping spree and got a 50" tv, blue ray dvd player, some other stuff like that, and for the rest.... Toys R Us baby!!! He had a grand time throwing toys into the shopping cart! I regret that I couldn't find my camera to take the pics when we got home, so I had to use my cell :-(

BEFORE:

AFTER

We will eventually mount it on the wall, but first we'll have to hire someone to come in and rip out that wall and put more support in the wall. that tv is pretty heavy.

Anniversary Gift- Julia Quinn Books

2011-11-29T15:38:00.004-05:00

I've been ensnared. I totally blame the iPad, Kindle app, & Julia Quinn.I probably haven't picked up a book since high school, and that's a really, really..... really long time ago. LOL Not quite 20 years I reckon. I honestly had forgotten how much I used to love to read (and write... but we won't go there) But life happened as it tends to do. A husband and 3 kids with various special needs and all that. But I FINALLY FINALLY got Jake and Katie both to stay in school all day this year (thank you lord!) and have a bit of free time now.

I must admit that reading has truly become my vice! I get nothing done anymore... nothing. It all started with a simple little purchase from Amazon. The name of the book was The Duke and I by Julia Quinn. I fell in love with the Bridgertons and now I am a total Regency Romance addict.

Soo... what does this have to do with my anniversary present? Check out what my dear husband got me for my anniversary! Awesomeness! I told him how much I liked The Duke and I and was planning on reading the rest of the series. So he went to whatever online bookstore he uses to buy his comic books (huge eye roll) and found these and bought them all. How cool!

Baking Cupcakes

2011-11-20T18:17:00.006-05:00

Video of Katie feeding herself & having seizure

2011-11-11T08:33:00.003-05:00

We took Katie to ChickFilA for lunch. She was doing such a good job feeding herself, so I took a video. she happened to have a seizure, which put her face down in the bowl! LOL gotta laugh where you can I guess, else you'd cry all day, right? Anyway. The neurologist says they are absence seizures. He said that on the EEG, other than the specific areas during the seizures, that her brain activity looks great, better than some of the "normal" (non seizure) kids. So that's good to hear, because Jake's always shows abnormal (background slowing and such). The neuro was quite upset to hear about Katie's spine fractures and osteoporosis. He said when he got the report, he went home and couldn't even sleep that night, he was so upset. He took her off of the Depakote, which can cause osteoporosis, and she is now on Clonazepam melty wafers. Her seizures are much worse, but she's only at half dose of the Clonazepam just yet. Kait had pretty much started refusing to eat, I'm thinking it might have been the gritty Depakote sprinkles in all of her food, because she's eating a lot better this week.

Make A Wish

2011-10-21T08:25:00.003-04:00

The kids will be receiving a wish from Make A Wish!!! Katie's wish is to go to Give Kids the World in FL. We'll go to Disney and all those places. From what I've heard, GKtW is really awesome and we're gonna have a great time! We're hoping that Megan will be able to go with us.

Jake's wish is for a big screen tv (and other cool media stuff). He's gonna love it!!

Katie's back is broken!!

2011-10-21T07:56:00.003-04:00

Now that I have your attention! She's fine. The doctor called yesterday and said that xrays showed compression fractures in the thoracic area.

Ever since Spring, Katie goes in spells where she seems to be in pain during diaper changes. It seems to come in a couple week long episodes and then will cease for weeks and then flare up again. When we roll her legs/bum up to pull the diaper out from under her, put a clean diaper under her, or to wipe her, she will tense up and cry. also when you sit her down anything other than gently, she will wince or stiffen in pain. I thought there might be something wrong with her hips or tail bone, but 2 xrays this summer showed nothing. So the doctor decided to order a scoliosis series to get a good look at her back (not really looking for actual scoliosis, as her back is straight).

Lucky that the doc decided this, as the xrays showed multiple compression fractures that we otherwise would not have known about. The xrays also showed osteoporosis. We are waiting for an appointment with an endocrinologist.

2011-10-20T07:38:00.000-04:00

Katie has started having a new type of seizure. We haven't seen neuro or had an EEG yet, but both are scheduled. We are doing a med increase now. I'm not sure what type of seizure it is. I thought maybe absence, but it doesn't exactly look like absence. She bows, her eyes go up, for about 3-5 seconds, and sometimes she picks are her hands and arms. She's having dozens and dozens per day.

Katie Trying to Stand

2011-05-17T09:49:00.003-04:00

She was in rare form this night. She was actually getting into squatting and holding it for a couple seconds. She's not been doing it much since though. She will get up on her feet and hands but not up into squat :-( But we were amazed! She transitions back to land PT next week (which she is not going to appreciate one bit!) but maybe they can work on this! Hope so.

Still loving Boyce Avenue

2011-05-15T09:52:00.002-04:00

One of my favorite bands, doing some awesome covers.

Letter Sounds

2011-05-03T16:42:00.003-04:00

I decided to test Katie to see if she could identify letter sounds with the actual letters.

Katie Signing

2011-04-29T10:17:00.003-04:00

We were waiting for the bus the other morning and Katie was a bit impatient, she does love school! So I pulled out my phone and recorded her and then played it back for her to watch. She is such a little diva!! LOL She loves seeing herself on video! So here she is showing off some of her signs. If you know ASL, then you will notice that her signs are no where near perfect, but they are close enough that we (mostly) understand her. These are just a few off the top of my head. I've stopped counting how many she knows, somewhere between 100 and 200. She can put 2 or 3 together but it's mostly" more xxx please, thank you". But occasionally she'll throw out a "hear baby cry" or something like that, which is really cool.

ABCDEFG...Now she knows her ABC's

2011-04-28T18:48:00.004-04:00

I've known that Katie has known a few letters for a while, but I've never "tested" her. I knew she knew the letters of her name and the letter J for Jake, but I never thought to try the all. We get her to point out her name on the iPad, but I haven't taken the time yet to test her. Anyway, today we were cleaning up her toys and found a bunch of puzzle pieces, they happen to be from an ABC puzzle and also a numbers puzzle. So as we were picking them up, I would pair 2 letters or numbers and request a specific one. She got EVERY stinking one right!!! Even the numbers she got right! I was in shock! Not only that but she attempted to sign many of them too! She can't get the proper sign because her fingers don't work well enough, but you could tell that SHE knew what she was signing. LOL

A little later in the day I took this video.

I know they work with her on her ABC/123 at school, but I haven't worked with her much. She has learned a lot of it on her own from using the iPad and watching TV! This kid is so smart it's unbelievable! I swear the iPad is the BEST think I have ever bought.

Jake's surgery

2011-03-25T09:15:00.003-04:00

Jake went to the orthopedic surgeon Wednesday. The doc looked at the xrays and said it looked nasty and asked what happened. He was not very pleased when we told him that Jake's accident was Monday and that we thought he just needed stitches because it was pouring blood, but that the local ER said he didn't need stitched and started to send us home until they saw it starting to swell and sent us for xrays showing the break. Anyway. As soon as we said bleeding, the surgeon stopped dead in his tracks and looked astonished... speechless even. He whipped around like lightening and grabbed a pair of scissors and cut off the soft cast. When he opened it up, he nearly had fit! Turned bright red and threw the papers he was holding down. And said let's get him into surgery.

WHAT!?!? He said it was an open fracture, the bone poking through the skin is what caused the bleeding, not the bench cutting it as we thought. And it was starting to turn red. Open fractures need to be taken care of immediately due to risk of infection... not sent home for 2 days, wrapped up in bloody gauze, waiting for a doctor appt!

Sooooo..... Wednesday afternoon Jake had surgery. All cultures came back good, so thankfully no infection. They set the bone and he has a cast from toes to above the knee. There's a hole cut in the cast above the puncture wound, this is to allow for drainage of the blood and goo. We spent Wednesday, Thursday, and now Friday morning in the hospital and are getting ready to go home as soon as wheelchair clinic bring back his wheelchair. They are fixing it up to accommodate his cast, as well as make some general repairs that we were going to schedule for this week anyway before his accident, so at least that saves us 1 trip.

He's feeling ok I think. Off IV because he pulled it out this morning! LOL Hopefully he'll do well at home.

Jake's Broken Leg

2011-03-22T16:03:00.004-04:00

Jake was in a little accident at school. He got his leg banged. We thought he needed a couple stitches, but turns out that it is broken. We take him to an orthopedic surgeon tomorrow. He's hurting some but is pretty drugged up.

Katie at pool therapy

2011-03-14T15:32:00.003-04:00

Katie can't walk independently. It's highly unlikely that she ever will. Though she's getting pretty good with her walker. She can't stand up without having something to hold onto to balance herself. She can MAYBE hold herself up for 3-10 seconds every once in a while before she falls, but you have to balance her first and let go.

Well, she started pool therapy at Children's Hospital (CHKD) in Chesapeake. She went for a 12 week session and toward the end, she started making some progress, so we got it extended for another 12 weeks. So she's been in it for 24 weeks and we've seen some MAJOR things, but her time ran out again. And there's other kids on the waiting list. So last week we went and I was trying to prepare Katie and tell her this would be her last time. She didn't understand at all. But she's gonna be so upset the first time we don't go.

BUT...... as I was telling Katie, the therapist says, I got good news!!! They couldn't find anyone who wanted our time slot and because Katie had made such huge gains in the last couple weeks, they could justify another extension, so she gets to go another 12 weeks!!!!!!!!!

We are so happy :-) She loves it so much. In the water she can keep her balance standing, she can walk independently, she can float, roll tummy to back, back to tummy. And the therapist decided to dunk her to see what she would do, and she did great, didn't necessarily enjoy it, but didn't choke or drown, so that's a plus!! LOL

She's learning to counter balance by stepping or leaning in the opposite direction to keep from falling. We're hoping the skill will transfer to land to help her not fall and keep her balance.

Anyway, I just wanted to share a little video of her walking independently in the water. It's really so awesome to see (for us anyway :-)

Jake's new do

2011-03-11T09:11:00.003-05:00

Hmmmm. Jake's hair was out of control. When it was clean, it looked so cute and looked really age appropriate for todays middle school boys, ya know. I really liked it long. But it only stayed clean for a couple hours. Then it was greasy and wiry and stuck straight off his head and looked BAD. It needed to be washed everyday, really needed to be washed 2x a day, and that just wasn't happening! I hated to cut it, but I did.

I slapped some hair gel on him this morning LOL.

Possible surgeries for both kids

2011-03-11T08:49:00.002-05:00

We took the kids to the psysiatrist today for their 6 month check in. Both kids MAY have to have surgery. We are still undecided. Doctor said Jake looked good, just needed new AFO's and was, of course, still tight in his legs. About the same, maybe 5 degrees less range as last appointment. But still he IS tight. Discussed doing Phenol again and decided against it because it pretty much only helped a week or 2 last time. So she scheduled him for Botox. Then on the way home, she called and canceled the Botox because of the reactions he's had in the past. I had said previously no more Botox because he has systemic reactions to it. But the further you get from a situation (as long as it's not a crisis situation I guess), it seems to dull a little I guess and I agreed to it again. Hoping the benefits would outweigh the side effects. Anyway, after we left and the doc was reviewing Jake's file, she decided against doing the Botox again. So what does that leave? We've already declined the Baclofen pump because of the way it sticks out of the chest, Jake would surely injure himself because he uses his chest to get up on furniture, and he falls a lot on his chest. He's already on oral Baclofen.

So... the plan is to see the orthopedic surgeon again and get his opinion on re-doing tendon releases of the adductors. Jake had this done when he was about 8 I think. Along with hamstgrings releases, and bilateral rerotational osteotomies. But here's where we are pausing... I just don't know that we can handle him in a spica cast. When he was little, they allowed us to use leg immobilizers and a wedge instead of the spica. But with Jake now being to big and so strong, I don't know if that would work. I already can't lift him at all. I can't imagine dealing with him in a spica cast. Plus the diapering. I just don't know.

Now on to Katie. Her AFO's have been really hurting her feet. Not only does she have her daddy's flat feet, but due to her low tone, the whole ankle and arch roll over and dig into the AFO causing lots of pressure, soreness, and blisters. So she's not wearing any now. The doctor said there's not going to be much to do, there has to be the solid foundation in the AFO to hold the bones in place, but if it's causing blistering, she can't wear them. Catch 22. We are waiting for an appt with the splint clinic to see if there's ANYTHING she thinks she can do. And if not, we will have to take Katie to the orthopedic surgeon as well.

The doctor said one way to fix the foot issue would be to fuse the bones in her foot so that they couldn't roll over, but she's not sure that the ortho would do it at her age. And she also thinks Katie may need heel cord lengthening, which would mean casting her ankles. And no more pool!! BLAH! If any of these surgeries happen, we are def waiting till summer. The kids LOVE school I'm not going to make them miss and plus I'm not going to make Katie miss her pool time!

Doc said if Katie can't have the foot surgery, or we decided not to, there is the option of just not using AFO's at all. She said kids can learn to walk with their feet rolled over (and Katie is doing pretty well in just sneakers... a little less stable then with the AFO's. but not too bad) But the problem arises when the kids get bigger, and that horrible foot position just can't support the weight of big kid/adult.

I hate making these decisions.

1 year (big) seizure free

2011-02-05T18:44:00.003-05:00

OK, we'll try this again this year... Katie is 1 year seizure free today!!!!!!!!!!!! She's not had a tonic/clonic or febrile seizure in a year, though she is having some myoclonic jerks. Hoping the big baddies are gone!

Kids have the flu

2011-02-03T10:58:00.002-05:00

Jake came down with the flu Monday and decided to share it with Katie LOL. Luckily she did have the flu shot this winter, so her sickness really only lasted 1 day. Jake is still a bit sick. Both had fevers of almost 103. Jake was pitiful for 2 days and barely moved. :-( We got lucky in that even though Katie's temp got so high, she did NOT have a seizure! YAY!! (or I should say Knock on Wood!!!) We're coming up on 1 year seizure free!!! Only 2 more days... hope we make it! Well, I say seizure free, I guess I should say "big seizure" free. She's been having a few myoclonic jerks, just 1 or 2 a day (that we see anyway... and not EVEY day.

Jake's not been to school all week, and I reckon I won't send him tomorrow either as he still has some snot and isn't 100%. Katie could have went today! She's fine. Was just sick Wednesday mainly. Just enough to make her miss her pool therapy, which she absolutely LOVES, and only has 1 or 2 more sessions. :-(

Other than the flu, they're doing fine. Jake is Jake. Getting to be a big fella. Katie is doing really well. She loves school, is doing A LOT of walking with her walker, and will occasionally go on the potty :-) She's come a long way this year!

Merry Christmas and Hello!

2010-12-27T08:24:00.008-05:00

WOW! It's really been a while since I posted! One of my goals for the coming year is to blog more often. So here's what's going on in the Ashley household.

The kids have been fairly sick all autumn with colds that we just couldn't seem to shake for weeks and weeks. All is well now thankfully! Katie went to the allergist and she is allergic to all the environmental stuff, including dogs and cats, so that put a kink in one of my Christmas plans. I was considering a cat, but ended up going with fish. :-) She is also allergic to wheat and soy. She currently shows no obvious/unacceptable reactions to them though, so we are not making any dietary changes. That may or may not change in the future. We are very thankful to not have YET been in hospital with her. She usually gives us a Holiday Seizure and Hospital Stay. Anywhere between Dec 1 and Feb. 1. Fingers crossed to get us through winter. Last year we spent 3 days including Christmas Eve and Christmas Day in hospital.

Christmas just passed this weekend and it was pretty fabulous. The kids really seemed to enjoy the entire season and Christmas morning was a lot of fun. They both actively opened their presents and loved their gifts. Santa put more thought into them this year, instead of bringing a bunch of little things, he got fewer but bigger/better things. Mrs. Claus talked Santa into quality over quantity.

Jake got a little basketball goal and a few Thomas the Train toys. He also got his own DirecTv receiver and Netflix box. Katie got an electric scooter ride on toy and a Pony (no, not a real one! LOL).

Megan and Mike and my mom and brother came over on Christmas Day. We had lunch and took Katie outside to ride her scooter. I sewed my first ever purse as a gift to my mom. It came out pretty good.

Christmas night it started snowing and didn't stop! LOL We got almost a foot. It's beautiful.

I hope everyone out there had a wonder Christmas!

Back To School Sewing 2010

2010-09-04T22:10:00.007-04:00

I've finished the majority of our back to school wardrobe. Jake needs 2 more pair of jeans and Katie needs 1 more and maybe some hoodies, but those can wait.

First up is 3 pair of Ottobre jeans for Jake. One pair I did regular with a zipper. This was my first jeans zipper. Totally not worth the effort! It came out great but it took me forever to figure it out. I only did it cause I thought it would make it easier to get his pants up because all of his old elastic waist ones from last year, I just couldn't get over his hips, therefore I thought the opened up zipper would be easier. But what I found was that the old ones were so hard to pull up because well.... he grew... 3 sizes, and they were just way too small! LOL So the new ones I made actually fit and go up over his hips just fine. So we'll stick with those!

Katie's wardrobe is a bit more fun!

This top is Farbenmix Antonia and the jeans are Farbenmx Kim

This shirt is Farbenmix Antonia or Quiara, I forget and the jeans are Farbenmix Dortje which I embroidered freehand:

Next, this shirt is from Ottobre and the jeans are Farbenmix Dortje again, just plain.

This pink striped shirt is from Ottobre and I know it looks bad. It wasn't completely dry and the flash accentuated the wet spots. I was impatient! LOL

This shirt is Farbenmix Antonia, just made really plainly:

And this shirt is Ottobre Orvokki:

These shorts started out as Ottobre "Pants with Frills". I cut out the uppers but when it came time to cut out the "frills" I just couldn't do it. It was just too FROO FROO. SO I hemmed them into shorts and added the pocket from Ottobre Sailor Pants.

Vacation & Katie's Birthday

2010-08-08T21:25:00.002-04:00

Katie's 5th Birthday Party! We went to Chuck E. Cheese on Wednesday. And then on her birthday, Saturday, we were at the ocean on vacation with my dad and his wife, and had a little party. At the beach, there was a jellyfish invasion, so we couldn't go in the water, but Katie still had a blast! She loved seeing the ocean and getting her feet wet and playing in the sand. She kept on, and is still, signing SAND, WATER, BOAT. We also went to the aquarium and she enjoyed seeing all the animals.

Some videos of Katie's progress

2010-08-05T11:19:00.003-04:00

Just uploading a couple of vids of Katie. First is one of her using her iPad. She likes to use the counting app. She also uses this as her communication device.

And this is one of her walking on the treadmill using a lit gait.

Jake's pj sets

2010-07-25T17:02:00.004-04:00

I FINALLY got Jake's pajamas finished up! WOO HOO!!! They took me forever! I used Ottobre patterns to start for both top and bottom, and altered. The top is Otto basic tee pattern (Creative Workshop?) that I altered into a onesie. The first one, I cut the neck hole too small as you can see it's kinda tight on him, but corrected the rest of them. And the bottoms are Otto 6/2009 and I added french terry knee patches, raised the rear seat to accommodate his diaper height, and I also added buttonhole elastic.

Botox, Phenol, & Baclofen... Oh My!

2010-07-23T08:10:00.002-04:00

This is one part of our lives that I hate. It's not like deciding on which vitamin to give your kid. Which very ironically, I stood in Target this week for 15 minutes trying to decide! LOL I couldn't pick between Flintstones, Disney, or Bears (all gummies as the kids will spit out the gritty regular kind).... BTW- after getting dizzy from comparing all the numbers, I just got the Gummie Bears because they were cheapest! LOL

But back to the matter at hand. Jake is scheduled for Phenol and Botox in a couple weeks. Neither work for him. He always has systemic reactions to the Botox. I hate it. He only gets it in his legs, yet for some reason he will drool incessantly, mouth hangs open, spend all day laying down, and fall flat of his face when he tries to crawl.... but yet doesn't help the spasticity in his legs! The last time we did phenol, it worked amazingly.... for 2 weeks, and then he seemed to rebound even tighter than before.

What's the definition of insanity? Yeh.... so why keep doing it. Baclofen oral has worked wonders for him in the past, but he quickly grows tolerant of it and we have to max out the dose, and then it looses it's efficacy totally, so we wean, wait, and re-cycle, until we don't see any benefits at all.

So that brings me to the now. We are scheduled for the Phenol and Botox. But should we look at the Baclofen pump? I have asked the doctor several times and she always says no because Jake has uncontrolled seizures. Last time I told her that Jake does have uncontrolled myoclonic seizures, yes, but they are "just" myoclonic jerks, he has not had a tonic clonic or complex partial in several years (many 5 or 6 years??). I told her that I was willing to take the risk. She said that we could do the hospital trial sometime and we left it at that last year.

So now I am thinking more seriously about that. I feel that it would really be good for Jake. I want to do it. But have you seen the size of the pump?!?!? The more research I do, the less and less I want to get it! I can not imagine that sticking out of him! It makes me want to cry. Jake is so skinny it would look soooo horrible. It would get hit all the time. Jake uses his tummy to lean on furniture in order to hoist himself up onto it. The pump would get in the way of that.

I just don't know what to do.

Sleepers for Katie

2010-07-09T08:09:00.005-04:00

I finally finished up sewing summer sleepers for Katie. Now it's on to Jake's!

I added preemptive knee patches on these because she crawls. Fleece sleepers usually hold up to the crawling, but because these are knit, they wear right out after about 3 or 4 wears, they would show signs of wear. So I added french terry patches from the get go!

iPad Cover

2010-07-09T07:37:00.003-04:00

We got Katie's iPad last week, YAY! I bought a pretty sleeve to put it in from Target. (I LOVE IT!) I had planned on cutting out an area for the screen. But I was scared to death that I was going to mess it up. It wasn't cheap, like $26. So I chickened out. And I'm really glad I did! I ended up using some neoprene left over from when I made her a pressure vest last year. Yes I really wanted to use some pretty fabric but that would have meant using batting, not neoprene, and it needs the protection of the neoprene.

Anyway. Sewing neoprene is a PITA, or so I thought. I have a Brother SE-270 sewing machine. I've had 3 total, because they've all sucked and had to be replaced (with the same machine) I hate it and will definitely not buy another one. I have friends who love theirs, but I don't! Neither of my 3 have been able to sew a zig zag stitch (which is what you need when sewing neoprene). A zig zag should look like this: ^^^^^^^^^ and what my machine does is this: ^^^---^-^^^^^--- , misses/skips the stitches. It's maddening. I ended up pulling my grandma's old machine she gave me years ago out and used that. Man did it sew like butter!! It's a vey basic and simple machine (v/s the computerized one I use with it's dozens of stitches) Grandma's has straight stitch and zigzag. But oh what glorious zigzagging it did!!! It's been 15 years or more since she gave me that machine. When I pulled it out of the case, it smelled of her. It hit me hard and yes I admit I cried sitting there sewing! I miss her so much......

So what should have taken 15 minutes look 4-5 hours! Sew, rip apart, resew, rip apart, etc. ARGH. Back to the not using the pretty sleeve. Once I got the black one sewn, I put the iPad in and the window gaped open. It didn't fit snuggley. The pull of the sides opened up and gaped the window. The iPad could have fallen out possibly and it was ugly. If I had just cut the window out of the pretty one as I planned, it would have done the same and I would have ended up having to take that apart and sew from scratch. As it is now, The black on the iPad provides less visual distraction than the colors would have, and now I can still use the pretty one to put the black one in for extra protection in her bookbag because with the window cut out of the black one, there is risk there.

So in order to fix the gaping window, I had to use clear vinyl to stabilize it. No I don't like the vinyl on it, but it works. It looks all bubbly on the screen. It also makes it hard to get the iPad in and out (have to use a sheet of paper on top of the screen so it doesn't stick to the vinyl, and remove it once the iPad is in. The iPad works with the vinyl on the screen, except for the screen rotation for some reason. So I just have to make sure I have the screen the direction I want it before I put it in.

The neoprene on the back is loop neoprene, as in hook and loop like velcro. So we can put a strip of hook (hard) velcro on a table or a vertical board, and stick the iPad/sleeve to it, and Katie can't knock it off accidentally. I added loops to the top so we can connect it to her walker or wheelchair as well.

BTW- the pucker at the bottom is not a mistake. It's a cut out for the speaker.

SO while this may not be the most beautiful or professional looking thing (no, I won't be sewing or selling these). It'll get the job done. And it cost me $0 (except for the pretty cover, but I'm talking about the sewing part). I had all the materials already here. The only thing I need to buy now is some kind of latch hooks to go on the walker so we can hang the iPad from it properly.

Morning Comes

2010-07-07T07:00:00.001-04:00

MORNING COMES (Perfection in Disguise)

he wakes before the morning sun
dares chase away the moon
till strength is found to leave his bed
lays silent in his room

he stretches out his bony limbs
and gathers all his will
to move his tight and useless legs
his fall then breaks the still

he takes a breath and looks around
then drags across the floor
he's trapped inside, there's no escape
sits crying at the door

he tears me from my lucid dreams
my secret hearts desire
of should have beens and never wills
where fate can not conspire

he calls for me with wordless cries
to come and set him free
i close my eyes and draw my breath
and curse reality

he waits for me to find my feet
and slowly make my way
to come for him, so early yet
and start another day

he tries again to beckon me
lips can not form the word
frustration grows inside his heart
his thoughts always unheard

he sees me coming toward him now
i go to set him free
a moments pause to clear my thoughts
he waits impatiently

he claps his hands and hits the door
his patience wearing thin
i reach to open up the gate
and see his toothy grin

he takes his leave down darkened halls
to struggle once again
with spastic legs that spite his tries
the same it's always been

he makes the old familiar turn
and heads straight for his seat
determined strength and stubborn will
he gets onto his feet

he struggles up, then turns to sit
his legs a twisted sight
this constant battle, so unfair
his body he must fight

he looks at me with me sleepy eyes
and stretches out his hand
he gently pats the place beside
he knows i understand

he smiles at me and reaches out
i go to his embrace
he wraps his arms around my neck
and draws me to my place

he squeezes tight and lands a kiss
then looks into my eyes
this little boy with broken wings
perfection in disguise

he may not walk or talk, i know
this life can seem unfair
then morning comes and heals my soul
an answer to my prayer

Lydia got her wings

2010-07-06T07:57:00.003-04:00

We got word today that one of "our" (our online special needs family) kids passed away last night.

My heart breaks each time my "family" suffers these losses. Many of these kids I've "known" for years and years. Some when they're born. Like Katie, some of "our" kids are born to families with other special needs kids, so we get to share in their birth stories and subsequent path to diagnosis. Some join our "family" a little later, when their parents are struggling with understanding and accepting their child's diagnosis and reach out to those of us who understand. Some join us even later still, when mom (or dad) just needs the comfort and companionship of other parents who get it.

This can be a lonely old life, the parent of a child with severe special needs. No one can really comprehend that unless you live it, day in and day out. The bonds to my online family are tighter than any real life bond I have (with the exception of immediate kin). We've suffered so many losses over the years. Each one still raw memories, reminding me that even though Jake and Katie are stable now, they are still fragile children with extensive medical conditions.

I grieve not only as a friend but also with a mother's heart, knowing but for the grace of God that it could be me with empty arms this morning. {{{HUGS}}} to Allison and Jason, along with Sophie, Amelia, Caleb, and Josiah. And {{{HUGS}}} to Lydia who is now pain free, whole in body and spirit, and dancing in heaven with all of our other sweet angels.

Jake had a bad day

2010-06-28T18:24:00.003-04:00

Jake had a really hard morning Sunday. We ended up taking him to Pizza Hut just to get him out of the house. It helped and he was better after we got home. But it was really heartbreaking. I had a heart to heart with him.

Jake doesn't understand a whole lot of what you say to him. Don't get me wrong, he does understand very simple things like "do you want to eat, go, play, school... etc) But you can't have a conversation with him and he understand... at least not that we can tell. He has almost no expressive communication. No speech at all. VERY MINIMAL ability to point to pictures. He can PHYSICALLY, but he will point to a dozen different pictures and shake his head yes to all of them.

Anyway. He was just unsatisfiable. He was crying and screaming and biting himself, and then get mad at us for not knowing what he wanted and bite us. Mike got very fed up with it and yelled at him, which only made him (and Katie) cry worse. So Jake was crying. Katie was crying. Mike was on the verge of crying. SO it was time for mama to try something... anything.

So I went to Jake and picked him up (as best as I could) and sat on the couch with him and held him. He put his arms around my neck and kinda shook me, and he looked in my eyes and cried such a sad cry (v/s the angry cry he had been doing). I felt so sad . And hugged him close and I told him that I was so sorry that we didn't always understand what he wanted and I was sorry that we couldn't always help him. And I told him that I know how sad it must be to not be able to do the things he wanted and to always have to have help and wait for someone else to figure out what he needed, and that I know it's so frustrating to not be able to talk and tell us what he wants. I told him I was so sorry that he was so sad.

Now I said all this mostly in complete exasperation and not knowing what to do and just feeling so sorry for all of us and I was just trying to calm him a bit. I had no delusion that would understand what I was actually saying, but to my total and utter surprise, he started ... weeping. Sobbing. He held me so tight and just rocked and sobbed the most heartbreaking cry I have ever heard in my life.

It's just so sad. It sucks and it's unfair.

1st time in pool this year

2010-06-22T16:18:00.003-04:00

We got in the pool for the first time this year. Daddy and Dianna bought the kids a pool this past weekend. We had a blast this afternoon!

Jake & Katie are doing great!

2010-06-22T06:28:00.002-04:00

I bought Kai some flashcards a while back & finally got around to opening them last night. I would show her 2 different pics & ask "which one do you eat?" or "which one do you wear", etc. She got prob. 90% right. The ones wrong was because she would fixate on certain pics & choose them before I asked anything. Pizza. Dog. Things that she really likes she would just grab the card and hug and kiss it! LOL

She also is trying to sign some ABC's. Doesn't get them right (fine motor) but over 50% she is getting the big movements (gross motor). For example for "A" she closes her fist but the thumb isn't right. Letter "B" she opens her hand but the thumb isn't right. Letter "D" she points up with her index, but the rest of the fingers aren't right. But hey!!! That's awesome!

I THINK she is also recognizing the letters "K" and "J" and her name and Jake's name. She gets it right about 75%. She does fair writing the letter "K" with hand over hand help, can't do it at all by herself though. I can't wait for school to start back so she can work on it at school too!

And Jake is really maturing! Mike and I were talking last week about how good he's been lately. He's a bit calmer (we did have a rough patch there when school was getting out for summer, but he was good before that and now that he's adjusted to being home, he's good again...... mostly LOL) But the last few months he's been answering questions more appropriately. Much more yes head shakes than no's. EVERYTHING used to be no. He still will shake his head no first and then yes if the answer is yes. LOL HE's a bit more patient and observant than he used to be too. He's sitting on the sofa more than he used to. He will now answer you (mostly) appropriately when you ask him is he needs a diaper change or if he's wet. He will shake his head yes and tap his diaper. I wish he could use the toilet, but that's not going to happen.

The first half of 2010 has been pretty good I must say. Hope I'm not jinxing it!!!!!!!

Happy Birthday Grandma...

2010-06-18T10:46:00.003-04:00

Today would have been my grandma's 80th birthday, and I'm feeling a little blue. It's coupled with the fact that the anniversary of her death was just a couple days ago too. I miss her so much. She wasn't just my grandmother, she was my friend. I am so thankful for the time I had with her. My biofather (her son) was not a part of my life after about age 2. I don't remember him at all other than the few times I've seen him as an adult. My dad adopted me when I was 4 and I was raised only knowing him. Thankfully he and my mom allowed me to still have contact with my grandparents and I would spend time with them in the summer and Christmas. My bond with her was one of the strongest in my life. She died of brain cancer. My grandma lived into her 70's, she had a full life. But I miss her everyday and it's still so hard for me. I wonder when does it get easier. When can I look back and smile instead of cry?

Medical Info Holder

2010-06-15T08:26:00.002-04:00

I just got this sewed up for Katie. I need to do one for Jake. I think it came out ok. Not the best, but then again, I just winged the pattern. I went into my sewing room with the intention of sewing Katie some sleepers, and somehow ended up with this! LOL Anyway. The Medical symbol is embroidered (emb from www.emblibrary.com) though I can't seem to find it up there anymore.

I'll put Katie's picture in the sleeve along with all of her medical information including emergency contact info, her dx such as cerebral palsy, seizures, nonverbal, etc and medications, and a copy of her insurance card. But will also list her ABILITIES. Such as, uses some picture communication and sign. And also things that someone would need to know if I am unable to be there. Such as: what they will eat (hotdogs and pizza is about it LOL), puts hands in diapers, will fall out of a bed, needs an enclosed bed or permanent supervision, drinks Boost from a baby bottle 3-4 x per day. Jake will be much the same, except he doesn't use sign, or pictures very well for that matter, and of course, I will put that he BITES when mad or hurt.

Retail... THERAPY?

2010-06-06T09:58:00.000-04:00

Sleeping Beauty

2010-06-05T09:37:00.000-04:00

YEP! That is a picture of my big girl sleeping in her big girl bed!!! I finally decided that it was time to reclaim my living room!! So we moved her into her room. Last time we tried, it was a horrible failure! Lots of crying, screaming, and vomiting. She's matured so much that I thought it was time to try again. She's been in the living room forever which means Mike and I have to run and hide in our bedroom when the kids go to sleep at 8! But she's been doing so well, going straight to sleep on the couch, it was just such a blessing for her to happily go to sleep by herself, it didn't matter to us WHERE she was.

So I put a gate on her door and we explained to her that she was a big girl and was to sleep in her big girl room. Of course she didn't understand what we were saying. Anyway, we put her in the bed and left. She did not appreciate that at all. She screamed for 30 minutes and then fell asleep in the floor at her gate, the first night. The second night she cried for 30 seconds and fell asleep in the floor at her gait!!! The 3rd night, she moaned a couple times and fell asleep in the BED!!! And slept all night. Evidently she realized that, hey, this is a pretty comfy bed, cause on the 4th night and every night since, we put her in the bed, she doesn't make a peep, just snuggles down and goes to sleep!! We watch her on the monitor and what she does is goes from where we put her on the bed she'll crawl up into the corner of the walls and put her face in the corner! Sometimes she'll forget her baby and we watch her as she crawls to the corner to get comfy, realizes she forgot baby, crawls back down to the foot of the bed and gets the doll and takes her back to the top corner!! It's so sweet!

So we are celebrating!! Of course we still run and hide in the bedroom at this point. But I have a cunning plan! ;-) I want to have a door put up in the hallway. That way we can stay in the living room without her seeing or hearing us.

End of school update

2010-06-04T08:39:00.000-04:00

I keep meaning to update the blog, but I really do seem to be rubbish at it!! LOL So since my last post, I had a birthday. I turned 36. As Megan was quick to remind me, I am now officially in my LATE 30's!!! YIKES! I didn't do anything particularly special, but that's not unusual. Mike also had a birthday. He turned 35.

We got new cell phones. It was time to renew, and much to Mike's displeasure I decided to totally upgrade to Droids! We have had a VERY basic plan and very cheap crappy phones forever. We started with Razr's but they both broke and we had to borrow OLD phones from family. Our cell bill has almost doubled! But we plan on canceling Hughesnet, which will even out. I must say the the Droid is awesome, for everything EXCEPT for a PHONE! The quality of the sound and also the mic (what other people hear when you talk) is total CRAP! It cuts out/drops every 4th or 5th word someone says, even when you call someone and it is just ringing, you can hear it dropping. It sounds very muffled too. I can't understand Mike very well at on on it unless he uses speaker phone. With the combined crappiness of his bad mic and my bad speaker/reception, it's just bad. From what I've read online, it's a pretty common complaint for the Moto Droid. Oh well.

Katie is doing great all around. She's in a reverse/posterior walker now and is getting pretty good at it. We just unlocked the swivel on the front wheels and she's getting the hang of steering. I'll post a video later. She's been wearing SMO's for a year or so now. The doc says she needs to go back into AFO's because her ankle is rolling over so bad. Said she needs more support up higher on the side of the calf to support the framework of her leg and prevent the rolling over the ankle. She didn't do well in AFO's before and really got so much better walking when we dropped to SMO's. So I'm kinda worried. But we'll see. They can always be cut back down into SMO's.

She still surprises us with new signs. Things we didn't know she knew, cause WE didn't teacher. She's just picked them up from watching Signing Time. Yesterday we were at the park for a birthday party for a girl in her class (YAY 1st birthday party invitation!). Anyway, there were several boats in the bay and she kept signing something to Mike and he didn't know what it was. So I came over and tried to figure it out (because her signs aren't 100% accurate, physically :-) So it dawned to me what it could possibly be. I asked her to sign BOAT, and sure enough, that's what she was signing! Cool. I showed her BREAD one time and now she asks for bread all the time.

Katie is done with school for the year. I'm so happy that we were able to have her repeat pre-K next year! SHe should be going into kindy in the fall, but she has an awesome pre-K teacher who loves her and Katie loves her. I think she will really do well with another year of pre-K, which is a more play and communication based program, v/s kindy where the focus would be on more formal education.

She using her iPod fairly well. I plan on getting her a touch screen netbook sometime and run Boardmaker Plus on it. I really think she'll do well with a bigger screen.

Jake is still in school for 4 more days. He'll be in 8th grade in the fall. It will be his last year at middle school. He's grown TOO much!! He needs wheelchair adjustments! Outgrew his shoes. His pants are too short. And lots of ZITS!! He's getting too big! And of course with his growth came tight tight legs. They are super spastic and look pretty bad, crossed over all the time. He will be getting phenol blocks soon. We also decided to do very minimal Botox at the same time. We should be starting the bathroom remodel soon. It's taken FOREVER to get it approved, but it finally was last week. I can't wait!

I guess that's it for now.

Katie Kangaroo

2010-04-18T08:28:00.004-04:00

I've had the pant and dress finished for a while now, just waiting to find time to do the shirt. But I finally got it done yesterday. In Katie's preK class, they use symbols to represent their names, such as Isabella, her's may be a picture of an igloo. Well Katie's is a picture if a kangaroo. The kids may not be able to read each other's names, but they can identify a picture.

Anyway. I found this kangaroo fabric a while back and had to have it! This is what I came up with. The jeans are Otto 3/2005 #15 and the shirt is 1/2007 #18. The dress is Kwik Sew 3673 shortened into a pinafore.

Jake went to Pectus Clinic

2010-04-17T11:21:00.002-04:00

Jake has pectus excavatum..... (and everybody says...."huh???") It just means sunken chest. His breast bone sinks in between his ribs. If it's bad enough it can cause problems with breathing where the lungs can't expand enough and with the heart.

Jake went to pectus clinic at CHKD. The doctor said we could do the surgery to correct it because it is technically a deformity, but that Jake's function is not impaired at all and the surgery is not needed for medical reasons (yet). We declined the surgery. If Jake were mentally able to make the choice himself and say yes, this deformity embarrasses me, etc, then that would be different, but he will never be bothered by it for that reason, so there's just no need. Our regular doctor can keep an eye on it.

On a side note, our hospital, CHKD, is the home to Dr. Nuss. He is famous for the Nuss Procedure. He came up with a less invasive way to treat pectus excavatum. We did not actually see Dr. Nuss. We saw one of his partners, but still, that would have been a comfort knowing Jake would have been operated on by the best! The old way to treat would be to open up the chest, break away the breast plate from the ribs, and reset it. The Nuss Procedure uses small holes, insert a curved bar behind the ribs and breast bone, flip the bar so that the curved part is pushing the breast bone out forward, and securing the bar. The curved bar pushes out on the breast bone correcting the deformity. That's a heck of a sight better than cutting you open and breaking your ribs off, huh? LOL

My Talk & Look2Learn (iPod Touch as a Communication Device)

2010-04-11T16:01:00.006-04:00

Katie is in speech therapy and they use picture communication. (pull a picture of an item off a velcro board) She went to aug comm clinic for an evaluation last year. A low tech device was ordered for her (which btw, we STILL don't have!) It's a device where you have a grid of 1,2,4, or 8 picture choices. You print the pictures, put them on the device, then record each cell. So you can only have up to 8 choices of say foods. But what if we want toy choices? Got to get up go get that print out, change recording settings.

What if while playing with the toys she decides she's hungry? How can she tell me... the food choices are now gone? Get the picture? (luckily she does use some sign, but what if she's at school where they don't know her signs?)

I would really like to get Katie a special touch screen netbook with some comunication software on it. It's called the Mobile Activity Player but it's not really in our budget!!

Soooooo..... I decided to take a risk and get an iPod touch for her. While not the nearly $800 for the netbook, still a $200 iPod touch for a cognitively disabled, sometimes destructive LOL, 4 year old, is a tuff decision, especially not knowing if she would be able to use it due to it being so small.

There are several apps for the iPod dealing with augmentative communication. I narrowed it down to 3. Proloquo2go looks like a really good program, but at nearly $200, YIKES! I looked it over and it looks a bit too advanced for Katie. So no opinions on that.

I also found (and bought) Look2Learn for about $25 and My Talk for about $35. Both of these apps are pretty good especially for the price compared to ProloQuo2Go.

----------------------------------------------

Look2Learn is a stand alone app. No subscription. I like it. The picture size is good. Works well for Katie. I do like the main screen where it has just the 2 big pictures "I want" & "*selection*"
It all looks really "clean". I like that the picture selections are on a black background, but I do wish the category selections were also on a black background. It seems to be a good program, no issues unless you NEED a different FORMAT, you know? Here are my "issues" with it.

#1- In order to edit your boards, you have to go into the main settings of the ipod. IE- the edit function is not accessible unless you go into the ipod settings and click to always "open in edit". And when you're done editing you have to go back into the ipod settings and click off. That's aggravating to me. It would be nice if the edit function was accessible within the actual app.... but on the other hand it could be aggravating if it was constantly accidentally selected, as in the MyTalk (see below)

#2- The opening screen is a picture of "I want". You can change it to be whatever you want. When you make your final selection, it puts in on the front screen beside I the "I want" picture. I do like that it puts it together for you like a sentence and not just uses the selected picture by itself..... then you click on a button to open your boards. My issue is that there are only 6 boards available, with no ability to create child boards. SO if Katie selects the "play" board, it opens up to "color', "bike", "swing", etc. If she picks "color", that is as far as it goes. It then goes back to the home screen where you touch "I want" and then "color". It would be nice if when she selected the picture of "color" if a child board opened up to actual color selections, "red", "blue", etc. And THEN go to the main board and say "I want to color blue" or even "I want blue". For this I had to use one of the 6 categories folders and make the whole board just for the actual colors. Valuable real estate, those 6 folders LOL.

#3- There is no audio during the selection process. So when she actually selected "color", there was no auditory feedback. The whole process is silent until it gets back to the main screen and waits for you to actually touch the pictures again, and then it speaks the words. Katie needs the immediate auditory feedback. I know not all kids need this but it should be an option to turn on/off. I may be wrong here, but I think Proloquo does what I'm talking about. It says the word of every time you touch and then puts it in a top viewing/ sentence bar. And if you touch that top bar, it says the sentence. I like that, but I don't think that top bar would work for Katie. But I really think when dealing with picture touch communication with audio cues, there needs to be audio.

#4-If you accidentally choose the wrong category, you can't get out of it. You HAVE to make a picture choice and then wait for the main screen to load and show the wrong choice answer and re-hit the select button. That's really frustrating.

---------------------------------------------

MyTalk is also technically a stand alone app, but they do have a monthly subscription service to access their editing software online. It looks like a good program and I like the ability to create multiple child boards. SUPPOSEDLY the web service saves your boards and you can "sync" them. I say supposedly because *see #1 below.

#1-The web service has been down for a while, supposedly will be back up in May. When I first bought the app, it was pretty unusable. You couldn't edit the boards actions or add child boards using the device. They did release an update a couple later which has corrected this problem.

#2- I emailed customer service, it took a couple days to get back to me, they didn't resolve my issues, I sent a second reply the next day asking for additional help. That was a week and a half ago. I have not received a reply. Though they did release the update that fixed my issues. It seems poor customer service to not reply. I only knew there was an update because I connected to download another app.

#3- While I do like the ability to get into the editing from within the program, it's aggravating as heck having to "login" each time. Username and password. I hate typing on this little thing!

#4- It doesn't look as "clean" as Look2Learn. Whereas L2L has that main screen with the 2 pictures, MyTalk has a white grid. It's not bad at all, but I like the L2L main screen. I like how it reinforces the "I wan't".

#4- All screens are white, and I really like the black screen on L2L for visual ease.

#5- Even when you only have 2 picture choices, the pics are smaller than what I would like. Lots of left over, white grid space not being used.

#6-When you go thru the child boards and get to your final picture answer. That picture comes up big on the screen, by itself. Which is fine. But when you touch that big picture, it doesn't say the word. You have to touch a small button in the corner that says "replay". Katie can't read, so it would be nice if the picture itself made it play. It says it when you select the small picture, but not the big picture. I like for it to be cause/effect. If it's touched, it speaks.

#7-Portrait mode only.

OK this is it for now. If I think of anything else, I'll post. Any questions? Feel free to ask.

________________________________________________________

L2L- Opening Screen, touch red select button and opens to-->

L2L- Category screen. Select category (I chose Meals) and-->

L2L- Picture choices screen. Notice there is no back button here. So if you picked the wrong category, there's no way to correct it. you have to pick a wrong picture before you can start again.

This is what MEDIUM size pictures look like.

Touch picture you want (I chose cereal) and it goes to-->

L2L- Main screen. Up to this point there has been no audio. Now touch "I want" and it says it. Then touch cereal, and it says cereal.

This is the final step unless you want a different choice, in which you start back at step 1.
_________

L2L- This is what LARGE pictures look like. You scroll through them. Katie does not have the ability to do this.

L2L- This is what SMALL pictures look like. They are too small for Katie.

_______________________________________________________________________

MyTalk- Opening screen. (Keep in mind my boards are only semi-deited, I'm not done) Notice the Logout button at the top. The top bar stays up there whether you are in user or author mode. When you log in you can edit. The bar at the bottom is your actual editing tool. When you logout, this bottom bar goes away and you can see more of the screen. As you can see I am in author mode, but am in view and not edit.

Touch your choice. I selected SCHOOL.->

MyTalk- After I chose SCHOOL, this child board opened and I chose I want to COLOR.

Choose you category-->

MyTalk- This board of color choices opens so she can tell me which color crayon she wants.

Your boards don't have to go this deep, in fact if you look back at the main screen. The yes and no buttons don't have any child boards behind them. They are the final answer. When you touch yes, it says yes and opens to the picture yes.

I chose RED-->

MyTalk- I chose Red. It opens to a big picture but as far as I can find, you can't get it to repeat "red" at this stage by touching your picture, as one, or at least, this one (ME!) would expect it should do when the purpose is picture TOUCH communication. All other stages/boards, you can set it to have audio or not, your choice. You hit cancel to go back to the previous screen or replay to hear it again. I don't like these little buttons. Katie can't touch them, nor does she understand their purpose.

This is your final board. It doesn't go back to a main board with an "I want" picture like in L2L.

SpecialTee Bib

2010-03-25T08:28:00.000-04:00

I think I finally have this pattern like I want it. I sewed this up yesterday and will be making a few for the store in the coming weeks... hopefully! It's a tshirt bib to wear over your regular clothes. The front is lined with a waterproof bib panel that is hidden on the inside.

The kid's haircuts

2010-03-23T09:03:00.002-04:00

I cut Jake's hair a couple weeks ago. I had let it grow out a bit and it looked ok. Kinda shaggy, but that's kinda what typical boys look like now. The only problem was his bangs were in his eyes. So I cut his bangs. Oh man did that look HORRIBLE!! It looked like a girls bowl cut from the 70's. I almost cried! The only solution was to buzz it all off. I hate that look on him. His accentuates his small head and sloped forehead. But it's the only thing I can do. I'm not a beautician that's for sure! So here he is.

Then last night I cut Katie's hair. Again, I was just going to do her bangs. Then I decided to take off 1/2 inch of the back just to cut off the split ends. Well, she wouldn't be still. She wouldn't look straight. She kept looking up and tilting her head sideways. So when I cut that 1/2 inch off the back, when she put her head straight... well that 1/2 somehow ended up about 2 or 3 inches! It's still longer on one side. I gave up. I guess it looks ok, but I don't like it. I want her long hair back!!

FarbenApples & OttoCords

2010-03-23T09:02:00.000-04:00

I finished up this set for Katie. I loved the shirt until I added the big brown collar! I didn't have any other ribbing that matched. So to balance it out, I decided to do the bottoms in brown too. I think that it does balance out the big dark collar, but kinda looks a bit boyish to me. But anytoot.

I love how the contrasting topstitching on the shorts look! I started topstitching in brown and didn't like it so I ripped it out and did green and I think it really makes the shorts.

The shirt is Antonia by Farbrnmix and I used Chez Ami apples, stripes, and solid pink. The shorts are Ottobre 3/2006 Sailor Pants (cut into shorts). Brown cord.

Starting on Katie's Summer Wardrobe

2010-03-13T09:47:00.000-05:00

Well, I sat down to go thru what I wanted to sew for Katie and had a couple things picked out and I realized that as long as it takes me to sew anything, I probably shouldn't do anymore long sleeves or hoodies!! It has started to warm up just a tad bit here, so I need to start on her spring and summer clothes. So here's my little start.

Farbenmix outfit for Kai

2010-03-01T08:54:00.004-05:00

I'm not sure if I like this outfit (together) or not. It's a bit more loud than what I'm used to. The colors match perfectly. It's all Chez Ami with the exception of the denim, but it seems a bit much. Mike likes it though, go figure.

Anytoot. Katie wears a sz 104 in Otto, I've never had any issues with the fit, but every.single.thing I sew for her in Farbenmix that I've done in a 104 has been VERY MUCH too small. So for the pants (Qumiara) I had to add a 3 inch yoga waist.

They were also about an inch too short, so i had to add the ruffle at the bottom, which in my opinion, the leg hems were W-I-D-E enough and didn't need the extra width of the ruffle, but they were too short and not much I could do.

They're also a bit tight across the hips.... so all in all.... I should have went up (at LEAST) a size!!!!! LOL I would say that next time I will, but IDK if I'll make them again. I mean I like them, but you can't have but so many of this style pant!! LOL Maybe in a couple years.

The shirt is the Quiara. I did go up a size on this!! And SOOOO glad I did! Cause even in the bigger size, it's still a bit snug, and of course that Chez Ami interlock just does NOT stretch at all! But I love this shirt! I'll def make it again but will ad a tiny bit of width if I use Chez again.

I wasn't attending it while the emb stitched out and the tension evidently got off and you can see the bobbin thread about an inch! My own fault.

She wore this to school this morning and I told her let's go show all your friends your new clothes. So while I was pushing her down the hall to her classroom, she was pointing to her shirt showing everyone we met!! LOL

What's your favorite rice?

2010-02-26T13:00:00.002-05:00

If someone had have asked me that a month ago I would have thought they had lost their minds, cocked my eye brow and said/asked.... white? LOL

My , my, my...... I must must say that buying a rice cooker has opened my eyes!! Some of my online friends had been discussing their rice cookers and I thought they were crazy... how lazy must one be to need a rice cooker?? Seriously? Put the rice in a bowl, pour in water, and zap for 5 minutes. Ya don't get much easier than that!

Well with Katie being so sick and the fear looming that it might be bad, I needed some serious retail therapy. So I went shopping and I bought me a cheap rice cooker. Man oh man! This gal will never eat another bite of Minute Rice again... EVER!

There are a few different types of rice that I've tried, but by far, my favorite is jasmine rice. The smell is just so wonderful as it's cooking, and it tastes delicious! I can eat it right by itself! Something that I would never do with Minute Rice!

Right now I'm eating some medium grain rice, WaterMaid (trying for the first time) I like the texture, but the taste is kinda plain. I cooked the rice in the cooker and when it was ready I put some bbq sauce and a little butter in a small pot and thru in some left over baked chicken and heated together, then I poured it over the rice.

Mmmmmmmmm, mmmmmmm good!!

Update on katie's lungs

2010-02-25T12:56:00.000-05:00

I want to thank you all for your prayers, and emails :-) and give an update. Katie got rocephin shots for 4 days which cleared everything up and she got back to being "Katie". We went to the lung doctor Monday. When she looked at the initial xrays, she thought Katie had collapsed areas on her lungs! So we went from thinking it might be a tumor, to it being collapsed lungs! So we went immediately for new xrays, and they showed that all of the spots/pneumonia was cleared!!!

She said most likely, the 1st bout of pneumonia from Dec never got cleared out completely when Kai had swine flu and then she got strep and the pneumonia already there got worse.

That said... the xrays did show thickening and inflammation of the main air tubes (excuse the less than technical wording there LOL can't think of it) Which indicates that Katie is at risk for or may have pre- asthma. We got 2 inhalers. Qvar to take for the next 6 weeks to try and heal her lungs and we go back for more xrays then. And also Proventil just in case Katie ever has an asthma attack.

We're extremely happy and grateful that it wasn't cancer of course!! Thank God!

She did wake up with a crusty nose this morning. :-( I am praying it's just a side effect from using the inhaler.

Valentine's outfit for Katie

2010-02-16T11:34:00.004-05:00

I managed to get this sewn. I was so proud of the pants... until I tried them on her! LOL The pattern is crazy skinny, and they did not fit. I had to do some creative problem solving. It looks pretty rubbish if you inspect it, but most people won't... HOPEFULLY!

She wore it to school, for all of 3 hours until I had to go pick her up and take her to the doctor!

Both pieces are Farbenmix. The top is Taja and the pants are Kim, with LOTS of alterations, including adding tapered side panels, rear rise, & front rise. I'm thinking I should have went with a bigger size maybe. She's a 104 in Otto, so that's what I did, Should have went with probably a 116! I also had to add a little length to the Taja sleeve, in the form of a cuff.

Sickness and seizure

2010-02-16T09:00:00.003-05:00

Well, it's been a while since I've updated. February has been busy. Lots of sewing. Lots of sick kids! Jake had a double ear infection and sinus infection and was sick for a couple weeks. He got better but may be a little sick again, we'll see. Katie was sick and still is.

She never got completely better after being in he hospital Christmas. She seemed to get better, she wasn't actively SICK, but never got back to 100% Katie. Then a few weeks ago, she came down with a cold/sinus infection (same time as Jake). So she & Jake went on an antibiotic. Jake got better. Katie did not. Katie continued to get worse.

Then on 2/5 she had a seizure. It lasted about 3 minutes. We changed her antibiotic. She started throwing up every time she saw it coming, so I couldn't get any more into her. She kept acting better, getting worse. Back and forth. I kept her home from school Thursday, but thought she was ok to go Friday 2/13. I sent her and by 11 the nurse called and said that Katie had a fever, was pale and lethargic.

So I took her back to the doctor. She had strep throat. We started Rocephin shots (antibiotic) since I couldn't get the liquid meds in her. Doc also sent us for chest xrays. The xray's showed that the spot/area on her lung that was there at Christmas when she was diagnosed with pneumonia, is still there, along with another spot below it.

So what does that mean? Pneumonia? That's what they are saying for now. Why is it still there, in the same spot? That's the million dollar question. The doctor said it may be antibiotic resistant pneumonia. She also said that she thinks it is likely that it's pneumonia caused by Katie aspirating when she eats and drinks. But she did not know. (Katie had a swallow study done last year that did not show aspiration).

I flat out asked her if it was a tumor.... she didn't say no. She's always been honest and "real"... she knows that I don't need or want a cheery, look on the bright side, head in the sand doctor. I'm not a run to the doctor at every sniffle parent. I don't need to be coddled or pacified. Her answer to me was that she didn't know and we need to be seen at Children's ASAP.

So that's where we are as of now. Waiting for the Pulminologist at Children's Hospital to call with an appointment. We're kinda in a fog right now.

Christmas Sewing

2010-01-04T11:44:00.004-05:00

I didn't get to finish all of my Christmas sewing because Katie was sick and in the hospital, but here is what I got done in time.

A bag for Katie's teacher.

Scarves for family.

Plastic bag/Grocery bag holders, also gifts for family.

Here is what I finished up after Christmas. They were meant to be Christmas gifts for the kids, but I didn't have time to finish them until this weekend.

A new wheelchair cape for Jake.

A Hello Kitty Hoodie and a pair of jeans. Both patterns from Ottobre.

An after Christmas Update

2010-01-03T20:54:00.004-05:00

Every December through January we hold our breath. Every year, with the exception the year she was born, she has had a seizure and ended up in the hospital sometime between Dec- Jan. So every year we wait. I will say that so far, knock on wood, she has not had a seizure, BUT we did end up in the hospital. We spent 3 days, including Christmas Eve and Christmas Day!!

The second week of Dec, Katie started getting sick. Her nose was running. Then she vomited. Then she had diarrhea. Then she started coughing and more with the snot. Then the fever set in. It kept going up to 102. For a whole week, we kept her dosed up on Tylenol and Motrin & cough and cold meds.

As week 2 of it started, Jake came down with it as well. Katie's "cold" wasn't getting any better, but her fever went away for 2 days. During this time we had a yearly appointment with the geneticist who looked her over and said her ears and throat were fine, that it was probably just a cold.

A couple days later, her fever came back with a vengeance. It was staying at 104. For 2 days, I was giving her 2-3 cool baths, stripping her naked, and pumping her full of Motrin. Her color was starting to look pale and yellowy. Jake's temp was staying at around 101 and he was coughing really bad. It was time (past time) to go to the doctor. I knew Kait was dehydrated and I couldn't get that temp down.

Soooooo.......... Both kids had the swine flu. Jake was sent home with TamiFlu. But Katie also had pneumonia and was dehydrated. So she was admitted for IV fluids and meds. They also found that she had a UTI. So we spent Dec 23-25th in the hospital. We came home Christmas night and Santa was nice enough to come that night and we opened them on the 26th.

Anyhoo- the kids are all better now. Here are some Christmas pics.

Katie's Thanksgiving Shirt

2009-11-23T09:03:00.001-05:00

This is the Thanksgiving shirt I sewed for dd that I messed up. When I was clipping the hem, I accidentally cut the coverhemming and the front fabric!! I got it fixed as best as I could and it's ok, I guess. The fray check dried mostly clear enough, BUT it's all hard a scratchy on the inside. I think it's long enough not to touch any skin though, so it'll be ok. No one will notice the pucker I'm sure, so I'm ok with it as long as it doesn't scratch her tummy.

I'm not sure if this is supposed to be a short pattern or if I just traced/cut it on the wrong size hem, but it was too short (would have been if I had hemmed it, and my dd is short so most things are too long on her!) Anyway, so I add the faux double layer on the bottom, which actually kinda ties in with the double sleeves, so I think it looks good. I did not do the shirring, instead I just did gathers (on both front and back).

This is the "Orvokki" from Ottobre 1/2009 with a Thanksgiving/turkey print from The Fabric Fairy that says "gobble".

I put it on her and she started signing "pretty" "purple".

Failure To Thrive

2009-11-21T08:06:00.004-05:00

Katie had a doctors appointment this week with the physiatrist (rehab medicine). She's doing great, really. It was just a 6 month check in. Doctor was happy with her progress and development... except for her weight. Seems she's grown almost 2 inches in height, but lost a pound. I could tell she had thinned out some, but didn't think she would be considered underweight. She's still on the chart, I forget now, but she's something like at 15% for height but less than 5% for weight.

So the doctored wrote for a new higher calorie formula/milk with a dx of Failure To Thrive. She's been on Pediasure but now we will have to switch to Boost. Pediasure has 240 calories/8oz and Boost has 355 calories.

She did FINALLY drink a full bottle this morning! First time in a long time. This past week, we've been lucky to get the full bottle in her all day long, but she drank it on down this morning. She also ate pretty good last night. She had about a Tablespoon of BBQ pork and maybe 1/3 of a banana. That was really a feast for her! LOL

Katie doesn't look too thin really. She's not gaunt or bony by any means. But she has definately thinned out. She's been wearing the same size clothes for nearly 2 years (and that ain't normal at 3 and 4 years old!) Just for reference, she's been wearing a size 5 since she was 3. The weight loss really isn't too noticable until you put her hair up. This child has SOOOOO much hair it's ridiculous! LOL But if you pull it back, you can see her face, especially her neck and chin, have really gotten thin. She used to have chortles (what Megan and I call double chins. :-) Look at the difference in these pictures, remember this is a difference of just a couple months!:

June

July

August

and now November:

Turtleneck for Katie

2009-11-10T09:20:00.000-05:00

I decided to finally get this thing sewed up yesterday! It's just a simple turtleneck. Nothing fancy at all. Just a simple basic piece to wear under other stuff. It's Ottobre 4/2007 # 18.

KC Chiefs orthotics for Jake

2009-11-07T21:43:00.002-05:00

Jake got new afo's. They flash. LOL I think probably all the teams would be available, but of course we got the Chiefs! Jake thinks they're pretty cool.

Sewed a couple things for Katie

2009-11-06T20:01:00.000-05:00

I sewed her a Halloween hoodie last month, for Halloween of course! I love this shirt.

And these jeans I sewed last winter, but they were way too big. Instead of taking them in, I just put them away to wait for her to grow... well, she grew! They are still to big in the waist so I had to take them in a little, but they were almost too short! So I sewed the smallest hem I could and it's good for a couple weeks I guess! (The white shirt is from Target)

Busy Stressful Week

2009-10-31T07:44:00.002-04:00

It was a busy and stressful week for us.

VISIT WITH FAMILY

Last Saturday we went to visit my family in Raleigh which is over 2 hours away. That wasn't stressful, but it did take all day. 4-5 hours in the car isn't fun. But we had a good time with my dad, step mom, and brother. We went to Applebees, a couple of fabric stores (of course!!! LOL), and SuperTarget. Jake stated home with MIL.

NO SCHOOL

Monday the kids were out of school. We stayed home all day, but that's more stressful than anything!! It's really no fun! Jake is just so unsatisfied at home. Kai can play by herself a little, but Jake can't so he's constantly whining and pulling on me and bothering his sister.

THERAPY & BOTOX

Wednesday Kai had her usual therapy but Jake had Botox injections. So Mike took Kait to therapy in Chesapeake and I had Jake at the hospital in Norfolk. He did really good. They gave him Versed to make him a little loopy. They usually use Emla cream to numb his legs and I didn't realize it because it has been several years since he's gotten them (I'll explain in a bit) Anyway, they come in, all 5 of them!! LOL 1 doctor and 4 to hold him down!) and I didn't realize that they were going to spray freezing spray on the injection sites. They had used that several years ago and he HATED it. He screamed and cried, so if I had known that was their plan (no Emla, only freezing spray) I would have stopped them. But I couldn't see what they were doing. So I hear them spray and then a scream, cry, and see him start biting himself and fighting to get up. So I immediately tell them to stop and not use the spray, and to put it in his chart not to use the spray ever again.

So now we are left with NO numbing of the injection sites, so they brace to hold him down. In goes the needle. He didn't even blink an eye! Everyone was a little taken aback! LOL So the doc continues with the shots. I believe he got a total of 6. He never moved. Didn't cry. Didn't flinch. Didn't even breathe funny!! Everyone stood there looking back and forth from Jake to me in total shock! LOL What can I say? I kid has a super high pain tolerance. He always has.

The reason we haven't gotten Botox for Jake in years is that in the past he has had systemic reactions from it. Which of course they say isn't "supposed" to happen, but of course IT DOES!! The Botox gets injected into the muscles that are spastic/tight and it weakens them and reduces the severity of the tightness. It's supposed to only effect the muscles it's injected into, with some possible minor spreading to neighboring muscles. But several times it went systemic, which means he had weakness spread through out his entire body. His upper body went floppy. He could barely sit up and spent most of the time laying. He leaned terribly when sitting. His mouth stayed hanging open and he drooled incessantly. ALL of his muscles were affected. It affected his eating & drinking, he choked a lot. There is a real danger of REALLY choking as well as aspiration. There's also a danger of this affecting breathing, which thankfully never happened.

So we swore it off for years, but he's so tight lately we decided we had to give it a try again. So far we are not sure if it is going systemic. He has been a bit floppy and quite drooly this week, but it's not unacceptable yet. I'm not sure if it's from the Botox or just sometimes he is more drooly than other times ya know? Time will tell. Oh yeh... in the past he has gotten anywhere from 10-20 shots at the time (2-4 in each injection site, but THANKFULLY they only did 1 per site for a total of 6, the syringe was bigger and all the med went in at one spot, whereas in the past they used tiny syringes and stuck the same muscle in 2-4 different places. Not sure why the change other than it was a different doctor)

EEG

Thursday Jake had an EEG. He hasn't had one in YEARS. His seizures seem to have gotten more frequent lately so the doc sent us. We haven't gotten the results back yet. Not expecting anything important really, as Mike said he didn't have but 1 that he saw. He said he was jumping (myoclonic jerks/seizures) both before and after they hooked him up, but only 1 during the test... that figures don't it?!?! Anyway, Mike said he did so amazingly good for the EEG. They used to have to papoose him down including his arms. He would cry and scream and vomit. He'd shake his head no the entire time! But Mike said they did papoose his legs just to keep him from trying to get up. But his hands were free and he mostly laid still and left his head alone (he has tactile sensitivities/aversion to having his head touched). Mike had to sing and play hand games and stuff the whole time to keep him occupied but it was a huge improvement!! My little man is maturing!

We should probably take them Trick or Treating tonight, but it's just not something we do. Neither one would keep a costume on, we have no "community", we live in the county. Jake would hate it and doesn't eat candy. I think Katie might be scared of seeing people in masks BUT she did good in school with hitting the VOD to say Trick or Treat. They said she enjoyed it and started doing it without prompt. Maybe next year. I don't know. If I had known she liked doing that I might have taken her, but we have no where to take her and no costume. So maybe next year :-)

What a difference a year makes!

2009-10-15T10:56:00.003-04:00

Just wanted to share a couple of pictures of Jake to show you how much he has grown and changed this past year. The picture of him in the gray shirt was at my dad's wedding in August of last year. The other pics were from last week. Puberty snuck up on us!

A couple pair of jeans for Jake

2009-10-15T10:47:00.000-04:00

I got a couple pair of jeans sewn up for Jake the last couple weeks. They are the same pattern (Ottobre) and are my go-to pattern for him. I'll be using this pattern until he's too big for it. I adjusted for coverage of his diaper in the rear.

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Closet Re-do

2009-10-15T08:17:00.003-04:00

Jake's bedroom is overrun with supplies. His closet holds both kids diapers (5 cases per month!) as well as all the unused equipment. We can barely get in there to his clothes!! His bedroom has anywhere from 10-20 cases of ensure and pediasure, along with his wheelchair (and everything else that a bedroom has.

We have a closet in the living room where you hang coats and I guess you are supposed to keep the vacuum and things like that in it. We have always used it for coats and diapers, but only enough diapers for regular use. Like a pack per kid and wipes. We kept them in one of those plastic bins with drawers on wheels that you get at Walmart. Just with 2 drawers, one for each kid. Diaper wipes and AFO's and shoes on top. Coats hung up over it. Lots on unused space though. So Mike got the idea a few months back to fill the unused space with packs of diapers. He left the coats hanging up, so he only stacked the diapers to just under the coats. So there was still lots of packs and cases in Jake's room.

So I get the idea last week that there is just too much wasted space in there, I decided to get a rack to go in there. Problem was that it was only 32 inches wide. It's hard to find a metal rack as tall as I wanted that was only 30 inches or so. But we went to Home Depot and found some plastic/rubber ones that fit. They were'y quite as tall as I wanted, but we had little other choice. I got 2 and put one in front of the other, filling not quite the entire depth of the closet. Which works great so we still have somewhere to put our shoes.

We got all but 1.5 cases of the diapers in there, along with the diaper wipes, extra diaper wipes, and a basket that I keep AFO's, the chips for the AFO's (cause you know they accumulate and multiply (we have about 6 pair)!!, yet some how you can never find them! LOL) and Katie's shoes.

Coats are now in bedroom closets. Plastic rolling cart thingy has been clamed for my sewing supplies. I love this new arrangement. Before you had to bend over and get the diaper you needed out of a low drawer, now you just open the door and reach in! It's kinda scarey to be so easy! LOL

BTW- anybody need a board game or 2?!?!? I have no clue why we have so many! We haven't played a game in EONS! We play scrabble maybe 2 or 3 times a year. But that's about it. I'f I won't so dang short, I'd take all that down, get more of theses shelves and go higher!! Put diapers on top and pediasure on the bottom. Hmmmmm... interesting thought.

Plans for Jake

2009-10-13T21:12:00.002-04:00

Jake's seizures have increase lately. He saw the neurologist Monday. I asked him if each and every time Jake had a myoclonic jerk, was each one considered a seperate seizure. He showed me one of Jake's old EEG printouts. He pointed to all of the spikes (seizures). He said each spike is a seizure/seizure activity, yet he doesn't have a jerk each time he has one of these spikes. He has many many more spikes showing on that scan than he has physical jerks. He said that they don't know why some of these spikes are accompanied by jerks and some are not, but that it doesn't necessarily mean that his seizure activity has increased just because his physical jerks have increased. The problem isn't the jerks, it's all of that seizure activity going on in his brain constantly. (He is currently having.. I would guess... 200-300 jerks a day) He ordered a new EEG to see if there is an increase in those spikes. If it does show an increase in seizure activity, then he said he is going to prescribe Banzel, which is a new drug.

Jake will also be getting Botox in his legs... this makes me very very very sad. We haven't had it in a while because I had sworn it off. I said no more! He has had several systemic reactions to it and I don't like it. He gets the shots in his legs, and it does help a little, but the problem is that is seems to always go systemic on him. His entire body becomes floppy, he can barely sit up, and will spend most of the time laying on his face. He'll start to drool terrible, and has trouble keeping his strength up to crawl. He'll lean over in his chair. It's aweful. But he has gotten so tight that I can barely change him anymore. We've tried diazepam and it hasn't helped in the least. We used to cycle Baclofen but that stopped working as well and we see an increase in seizures when he is on it. But I think we are going to go back on a cycle after the botox.

He will also be getting Phenol injections again in a few months.. maybe. It's planned but I'm kinda scared of them.

Anytoot- the neuro was impressed with Katie and how well she is doing. No changes for her.

Maybe some music will help?

2009-09-16T19:16:00.001-04:00

I bought Katie a little flash drive w/ a built in music player from Target. It is VERY basic, no screen or anything, and just one litle button to control the volume AND change songs. It only cost $10. I didn't want to spend big bucks on a fancy MP3 player/Ipod until I knew it would work. Anyway, I got it to see if listening to music would help calm her at school. She's not doing very well during transitions and is, of course, refusing to lay down during rest time. So the plan is to not make her lay down, which will cause her to wail!! But instead let her sit quietly in the book area and look at books and listen to music with headphones on. I am hoping and praying this helps and that she is able to stay at school. I have been going with her most all day and also bringing her home early. It as really put a kink in my plans of sewing and exercising! :-( But anyway I started to buy an Ipod BUT thought it best to NOT to make such an investment just yet (and in no way did Mike have a cow about spending that much money! LOL it had NO influence on my decision to get a cheapo $10 one! Nope, no influence at all......Nope, I wasn't drooling over them or anhything..... dang man! Have y'all seen those touch Ipods? They are cool! LOL)

Send us good music vibes that Katie will enjoy the music and school in general!

Hola! and Bye-Bye

2009-09-12T12:53:00.002-04:00

Katie can't speak. When she was 2 she had a few emerging sound/near words. We were really surprised and of course (cautiously) happy. When Jake was 2, he had a couple words too. He could say ma and muh, meaning more, mama, and milk. He said "wa-wa" 1 or 2 times for "water" and we were crazy happy, sadly this was about the time he turned 3 and, without reason, he lost all ability to speak the few sounds he had. He stopped vocalizing anything meaningful other than laughs, cries, and hollering.

Well, Katie turned 3 last year, and just like her brother, it all vanished. Without warning. She just stopped speaking. She started humming (which by the way nearly drove me crazy LOL) Thankfully she doesn't do that very much anymore. (BTW- if you're wondering if the kids have autism... not technically, Jake has ben dx'ed as autistic spectrum disorder or something like that. He doesn't meet the full criteria, but has many characteristics. Katie is a little better off than J, but basically what the deal is, is they have a mutation on the gene responsible for Rett Syndrome (and no, they don't have that either LOL the doctors don't have a clue.) Rett Syndrome and Autism and Angelman Syndrome, Take these diagnosis's, shake their characteristics up mix and match, you got my kids.

WHERE WAS I!???

Oh, yeah. The last couple of weeks Katie has been letting out this little breathy "bye-bye" It's so awesome to hear her little voice again! I don't know how long it will last, but I'm loving it. She will wave her little hand and say "bye-bye". I have no delusions that she's going to speak. She is doing good with her signing, but I love hearing her voice. It's more breath than actual vocal, but there is some vocal and it's awesome.

Hola!
Last night Katie was watching tv, Sesame Street I think, and someone said Hola! She threw her hand up in the air and started waving to the tv. LOL I thought that was pretty cool. So that's English, Spanish, and ASL. :-)

Losing a TV but gaining peace of mind!

2009-09-11T08:28:00.004-04:00

The kids have their own tv (not that they don't still demand "the big tv" LOL) Mike and I watch VERY little tv because it is always on Barney or Blue's Clues. The only time we really are able to watch tv peacefully is when the kids are in bed and we are in our bedroom at night.

Well...... the last few weeks Jake has been pushing/pulling on their tv. It's not a huge tv, but it is an older one and is heavy. It's not secured, yeh I know it should have been a long time ago, it's just never been a problem. But Jake has gotten so strong the last year and now he is able to slide the tv around on the table. He has pulled it now 2 or 3 times to where it is hanging about 1/3 off the table and if I hadn't heard it slide and went running, it would have fallen on him.

I was going to try to secure it with safety straps, but it seems most of them are made for little ones who don't have the strength Jake does. So we have decided to give him our tv from the bedroom. It's a flat/wall mount kind. We just have to buy the mount and we'll put it up out of his reach.

Does this story sound familiar at all? LOL Yeh, last year he nearly pulled the HUGE old tv (pic in upper right on this page) on top of Katie. That's when we got "the Big tv" for the living room. It's mounted too.

Hummm.... it just occurred to me as I'm typing, I have some Rubbermaid nonslip. I'm going to see if that helps as a temp solution until we can get a mount.

Summer Sewing

2009-09-04T13:27:00.001-04:00

Here are the clothes I sewed for the kids. Jake didn't get much, huh? LOL I'm working on a wheelchair rain cape for him now.

Here's all he got. A jacket:

Store News!

2009-09-01T19:53:00.003-04:00

Hi Everyone!!

Just want to post here that I will be opening my store back up on Sept. 7th and having a Labor Day Sale!! 20% off the entire store! Come see if there is anything you want!!

Also.... I will be giving away a $50 gift certificate. Check out my other blog for more info!!! (http://somethingsewspecial.blogspot.com/)

YAY for school!

2009-08-28T08:09:00.002-04:00

Jake has gone back to school!! YAY!!! That makes all of us very HAPPY!! He was so ready! I never imagined my little man would love school, but he does! He loves his para, he loves the bus, and he is happy every morning getting ready to go. So YAY! The school has gotten him a new stander. Long dramatic story behind that, but it's done.

We FINALLY got his walker.. it only took 2 years! :-( He's lost all ability to walk. And to top it off... his arm prompts were for some unexplicable reason... DENIED! He wouldn't be able to use the walker without them, even if he could still walk!! We're waiting on an appeal, but to add icing to the cake.... the manufacter doesn't have any and gave no date of availablity, even if they get approved! Lovely. The doctor wanted him to go in hospital for inpatient therapy, but with Katie, that's not very easy to do. Mike has to work! So we opted for 3x week in Chesapeake, which is a little over an hour a way and where Katie already goes on Wednesdays. Still theproblem remains we don't have his arm prompts and he can't use the walker! So we had to put that on hold. It's all ridiculous.

Katie is doing well. She will start school on Sept. 3rd. She's going to love it. She loves kids and signs "children", "friends" every time she sees a child. She has started putting 2-3 signs together in sentences!!! It's really cool. The other day she pointed to the picture of bubbles. I told her not now. So she signed "bubbles". I told her no, to which she looks at me and signs "more bubbles, yes!" LOL She continued to point to the picture and sign bubbles, she looks and me and signs "please"...... what's a mama to do??? LOL

Her signing vocabulary is getting really big, though she doesn't use all that she knows and she's not "conversational". And she doesn't sign them all perfectly. I think the funniest one is "smart" You put your middle finger on your forhead and then turn it away from your head and point it outward. She shoves her finger up her nose!!! LOL Don't ask me why, but that's what she does! A lot of her signs are almost but not quite to the area they should be, like "pretty" is you put your hand up palm facing your face and you kind of sweep it in a circular motion around your head/face. Well, she puts her hand behind her ear,on top of her head and sweeps it forward. I should really update her signs list.

I'm all psyched for her to start school! I didn't get as much sewing done over the summer as I would have liked. I did 3 outfits for Katie and a hoodie. I just did one light jacket for Jake. I hate to open my store back up because I want to really sew for the kids when they go to school and I have lots of free time, but honestly... we are dead broke and need some money! So I really need to go "back to work". I'm thinking of opening it back up on Sept 7th, Labor Day, and having a sale. I don't know yet.

The Mountains!!

2009-08-09T17:15:00.006-04:00

We got back yesterday from our mountain vacation with my family. It was wonderful! A bit of a long ride! But well worth it! We went to Boone, NC, which is the mountains. We left Jake home with Mike's mom and took Katie with us. Jake would have been miserable and unbearable in the car that long, not to mention anywhere we went. It was hard enough with Katie.

We thought Katie would be able to enjoy some of the things up here, but.... not so much. She enjoyed being in the motel, just the excitement of new surroundings, so that's ok. If you look at all the pics, there is a distinct difference in Katie's facial expressions where we are out and about doing things, and when she was at the motel, in her comfort zone. Not lots of noise, not lots of people, "safe" from all of those sensory overloads. You guys with autistic and/or sensory kids, know what she goes though. :-(

We went to Tweetsie Railroad. We thought Katie would really enjoy it, but it was pretty bad on her. There was a Frisbee dog show which we knew she would love, and she did love the dogs, but they got the audience to cheer and Kait couldn't take it. It terrified her so we took her a way until they did the pool jumps, then we stood on the other side of the pool away from the crowd but had a great view. She liked it, but was still in such a bad way from getting so upset, she didn't even smile I don't think. That was the start of our time there, started out badly, so we didn't get any smiles in any of the pics the rest of that day!

When we got on the train, she still wasn't happy, but was ok. Train whistle blowing wasn't too bad for her, but the ride has a "show" (train stops a couple times and has an Indian fight, etc) The gunfire comes in over the speakers on the train, and it was too loud for her. She got and stayed so upset. She was screaming and crying and gagging almost throwing up. And there was nothing we could do. We were stuck in it.

When we got off, we rode the merry go round, but that was just the end of it for her she was so upset, so we left. We hoped that she would take a nap in the van, but as soon as she started to doze, she had a myoclonic seizure which woke her up, she did sleep after that, and then we went to supper.

Tweetsie Railroad was cool and would be fun for most kids (and adults!), but I can't recommed it to any of you if your kids have auditory sensitives (whether an auditory sensory or auditory provoked seizure issue) Katie has both, though her seizure wasn't b/c of the sounds this time, it was because she was so upset.

We went back to the motel and got in the pool, which was wonderful for her. She had been asking to go the whole time we've been here. She kept signing water!

We went to Linville Ccaverns. It was wheelchair accessible for the most part. Couple places it couldn't go, not sure how well an adult size chair would fit though. Actually Katie had to be carried the whole way! LOL My stepMom ended up pushing an empty chair around! LOL We met a fellow SewingMama coincidentally while there!! The caverns were really cool, totally me and Mike's "thing". We're such science and history nerds!! LOL

Then we went to some waterfalls! Long... long... tiring hike, but it was beautiful! Everyone took turns carrying Katie (not wheelchair accessible at all)... she's kinda heavy!! Then later that night my family had a birthday party for her!! She is now 4 years old! HAPPY BIRTHDAY KATIE!!!

We went with my dad, stepMom, aunt & uncle, another aunt, and cousins. They stayed in a cabin/house rental, but we stayed in a motel. It would have been nice to stay with them, fun, as they like to play games and stuff, but I don't think it would have worked with Katie, maybe another time, if she can when she's older.

It was really sad to leave.... I had to console myself with some fabric!!

Did Jake have a seizure today?

2009-07-31T19:05:00.002-04:00

Cause I'm not sure myself. I am going to say no. But I'm not certain.

It's been many years since Jake had a "big one" At least 5 years. He has multiple (well over 100) myoclonics every day. But they are not that bad. We've never been able to control them, but they were once 600 or so per day. But he's not had a tonic clonic or complex partial seizure in a really long while.

Because it has been so long since a bad one, we weaned Depakoke Sprinkles this summer. Leaving him only on Clonazepam. So of course that has my brain (and stomach) churning!

This morning we had a carer here to give him a bath. After his bath, he is to crawl to his bedroom to be dressed. Well, he wanted to go to the living room. So the carer stood in his way and told him to go the other way to his room. When Jake turned to go to his room, he fell flat on his face/tummy. I got up and walked to him to try and get him to go on because he was naked. When I looked at him he was laying on his tummy, staring blankly and his leg was jumping. THAT SAID... it was only one leg, and looked more like positional clonus (which he has all the time) I called his name several times and when he didn't respond I got that oh **** feeling in my stomach and touched his face and poked at him a bit. He still didn't move a bit, not even his eyes to look at me. So I jumped down (clownishly) in his face and did a silly face (trying to illicit reaction) And he did let out a very little weak snicker and raised up on his arms a little and fell back down. AT this point he did look at me. I then dragged him to his bedroom, he seemed fine after that. The carer dressed him and took him on to McDonald's.

When he got home from McDonald's, he seemed a little slow, but it was extremely hot and that most likely was the reason for that. One eye also seemed a little droopy, but again, it sometimes does droop when he's tired.

So the question is, was it a seizure? Possibly. Was it not a seizure and just Jake being a bit lethargic and spacey? Possibly. It will have to happen again before I'm willing to say it was a seizure. Sucks.

Pressure Vest for Katie

2009-07-31T18:40:00.000-04:00

I sewed up this pressure vest for Katie. Super simple. Cost about $30. I had to spend $60 but had tons of neoprene left over. Enough to make another vest (hence I said it only cost $30) I will make a pair of pressure shorts instead of another vest, but that'll have to wait a bit. The neck and underarms are bound in fold over elastic (FOE). The front is 3mm neoprene. The back is 3mm neoprene U-Loop. And I used 1.5" Aplix for the fasteners. Neoprene is a little tricky to sew on a home machine, but 3mm was not too difficult. I bought specialty thread but my machine would not sew with it. So I had to use regular thread, which they say can cut into the neoprene, but I'm hoping it'll be ok.

A pressure vest is used with kids who have sensory issues and muscle tone issues. It gives a "hug" and helps sturdy up the trunk muslcles.

Today I am Thankful

2009-07-30T07:14:00.002-04:00

Today I am thankful for:

1- My kid's health. Yes they have whatever it is they have, but they are healthy. They are in no pain. Their seizures are at an "acceptable" level (I guess). And they are happy.

2- Jake is now going to bed all by himself like a big boy!! He will crawl to his room (sometimes without prompting, most of the time with a little prodding LOL) Crawls up into his bed, get's a diaper change. We cut the light out and leave and he goes to sleep!! We NEVER thought this day would come!

3- For air conditioning!!

4- For a nice home. It may be a "trailer" (very nice double wide!) but it is big enough for our needs (mostly LOL) It is in great condition. And it will be paid for in about 4 years! We have scraped and saved, not taken any vacations, refi'ed and made extra payments, and finagled our 30 year loan down to less than 15!

5- That were ARE going on vacation!! LOL Can't wait to go to the mountains!!

6- For our neurologist. We have been with Dr. T for 12 years now. It's actually "nice" when the kids have a neuro appointment. It's like going to see your uncle or something! (I would say grandpa, but he's not THAT old!! LOL) I totally dread the day he decides to retire!

7- For Mike's job. He has a great job and his boss is one of his best friends. He can pretty much take off when he needs to and there's really no stress. He enjoys his job. He goes in uber early and is home early.

8- To have "reconnected" with my dad and stepMom,and aunt and uncle, the last couple years. I have very little family, and none of them are very close (I'm not talking close in location, I mean close like family should be.... I'm drawing a blank on an appropriate word! LOL)

9- For Mike's mom. Despite our... differences in personality... I appreciate her and am thankful that she helps out with Jake.

10- For DVR- without it, I would NEVER see anything on tv.

11- For internet- without it, I would be lost, lonely, and miserable.

12- For the ability to sew. My grandma gave me my first sewing machine and I am forever thankful for that!

13- That Jake LOVES school and Katie will start in Sept!! Free at last, free at last! LOL

14- Signing Time

15- A basic knowledge of computers (somehow an HP update took out my router this morning!) I'm thankful that I don't have to pay someone to look at my puter every time something goes awry!

16- All of my online friends. In total honesty, without any exaggeration, I do not have 1 real life friend. Teachers, doctors, therapists, yes. But not one friend, not even 1 "acquaintance". I get up. I stay home all day with the kids. Mike comes home. We have supper and go to bed. Wednesday we go to therapy. The end. I can't imagine how lonely I would be without my online friends!

17- That Megan seems to be going well lately. She's still married, at the same job, and has enrolled in community college!!

18- That the kid's diapers are covered, even if they are the sucky brand! At least they are free.

19- That the bathroom is going to be remodeled (and wishes they would hurry up!! LOL)

20- For coffee.

Katie riding Trike

2009-07-20T09:03:00.004-04:00

This is a video of Katie riding the trike at therapy. She is getting better and better! I wish we had one for her to use at home. The more she uses it, the batter her walking will become! It's a great muscle strengthener as well as patterns the recipricol movements needed for walking. (BTW_ I am behind the camera!! No that's not me in the video!)

One LONG update on us :-)

2009-07-20T07:30:00.005-04:00

Well, I've been totally neglecting my blog. The kids have been keeping me busy (that's putting it very NICELY! LOL The are really difficult here... together.... all day.... every day. It's just.... constant.

Kids will be in School Soon!

I am totally excited and marking off the days on my calender untill school starts back!! Jake will go into the 7th grade the last week of August and sometime in September, Katie will start preschool!! YAY!!! I've not had any ME time... well... EVER!! I had Megan at 17, when I was still in school *blush* then when I got her in school, I had Jake. Then when Jake was finally able to stay full day in school and not have to be picked up early (or have the threat of needing to be picked up so I still couldn't do anything) by then, I had Katie. And now Katie will be 4 and she seemed to love what time she spent in school the last year ( 2 hours a week) So, I'm very excited that she will be able to stay all day and give me some much needed FREEDOM!!

Sewing

My plans are to SEW!!! I have closed down my store until September. The kids have 15 appointments between now and when they go to school, plus we are going on a vacation!! YAY And I need to sew their school clothes, so I closed the store temporarily. But when I open it back up, I plan on sewing like a mad woman and getting it "stocked" instead of doing all custom orders, which can be a bit stressfull!! I will be sewing up some big kid onesies and some of my new "SpecialTee Bibs". I have had a lot of inquiries about these, so that's promising!

But first I need to sew the kids school clothes. This will be the first year I have ever sewn "Back to School Clothes" and the first attempt at sewin a "wardrobe" for the kids. I've sewn outfits, but it usually takes weeks to do one! So wish me luck! LOL I have "narrowed" my patterns down to 21 choices for Jake but about 50 for Katie!! LOL. I went through my Ottobre and Farbenmix collections and wrote down the ones that will work for the kids (ie- elastic waisband on pants, patterns for knit shirts and not woven/button up. Now I need to narrow it down, trace the patterns & choose fabric.

Vacation

Oh yeh, I said we were going on vacation!! Yep! We are going to the mountains with my family. Mike and I have not had a vacation, well, ALMOST NEVER. We have been together for almost 20 years. The extent of our vacationing is- we spent 1 night for our 10th anniversary at Nags Head. And then in, I think 2003? We were gifted a week in a condo in Myrtle Beach, SC. We had Megan and Jake. It was nice. A lot of work having to pack all of Jake's stuff and keep him safe in an un- Jake-proofed space, but it worked ok...... but that's IT! 1 vacation in nearly 2 decades... pretty sady. We really don't get to do much.

So we are excited to be going to the mountains! Though I am terribly afraid of the mountains!! When I was 10, my grandfather almost drove us off of Grandfather Mountain in an RV. I still am scared to death of that memory! But I'm sure it'll be just fine (insert scared, uncertain, twitchy emoticon here!)

Katie

Katie has learned how to ride a trike. She rides one at therapy. We wish she could have one for home but they are expensive. She's doing "ok" walking. We've not been using the walker, but instead walking holding her hands. She is pretty stiff legged, but does better after some warm up time. She needs new SMO's. And I am sewing her a pressure vest.

Jake

Jake is not sleeping well the last few weeks. I don't know if he had a bad dream or what. But he fights sleep, his meds weren't working anymore and when we try to put him in his room he panics and hyperventalates and bites. So we have doubled his sleeping pill and I go and sit withhim in his room until he falls asleep and I sneak out. The double dose of sleeping pill, did not work to knock him out well enough to get him in his room w/o waking him, but since we have changed the routine of me going into the room with him for 30 minutes or so until the pills do put him to sleep, has been working. It's a little frustrating to have to be stuck in there with him being quite as a mouse, but at least I do have a laptop to keep me occupied now. Maybe, hopefully, one day he will be able to go on his own.

Wishlist!

There's a site called Wish Upon A Hero, where you can post a wish and hope someone grants it. It's a little weird, but I may do it. Why not? I want Katie to have a Rifton Trike and Jake to have a wheelchair swing. I would also LOVE LOVE LOVE to have a Surrey Bike. These are the family bikes you see like at the beach on the boardwalk or on trails, where they have a front and rear bench and the whole family rides together. I think that would be just awesome!

Well, I reckon that's it for this morning. I better get to work.

Jake got new Onesies

2009-06-21T10:58:00.003-04:00

I think I am finally done sewing Onesies for a while THANK YOU!!! They're not hard, but not my fav thing to sew. Anyway, they fit great and were much needed . All of his old ones except 1 were getting tight.

Kissy Face

2009-06-18T18:44:00.002-04:00

I sewed these shorts for Katie and when I took this pic I told her to give me kisses! LOL

A great way to end the school year!!

2009-06-10T20:56:00.001-04:00

Getting ready to remodel the bathroom!!

2009-06-08T18:00:00.004-04:00

We are getting ready to remodel the kid's bathroom!!! I'm so excited! We got a contractor in this weekend to go over my plans and he will work on them this week. The bathroom we have now is very small. We can't get Jake's wheelchair in it at all. When we take him out of the tub, we set him on a bathchair/bench beside the tub... then we can't get the door open!! It's been rough the last year. He's so big and heavy. So it's time to do something about it.

So here is what we have now and what we plan on adding/changing:

These are just my rough drafts and not exactly to scale.

#1- Add several feet on to the left of the room. This will take away some of our living room, which TOTALLY sucks! I have no idea what to do with the furniture now! But it'll be worth it!

#2- Close in the door (which will involve stripping the entire hallway down to the kid's rooms in order to get it to all match)

#3- Place new wide door on the left (I got a little excited about the extra extra wide wide door I guess LOL)

#4- Leave existing closet.

#5- New handicap toilet... turned against the wall.

#6- Close in the large window behind the (new) toilet, and put in a small higher up window... Why on earth anyone put that stupid window beside the toilet in the first place is beyond me! Nothing like sitting down to "go" and finding that someone (ahemmmm... mother in law??) has opened the blinds and you are on show! LOL

#7- Tear out old vanity and sinks and replace with a wheelchair accessible sink. No vanity, but will need a large mirror.

#8- New tub, turned against wall ... not sure what we will do. We are thinking maybe a clawfoot. We need something with room under it for the legs of the Hoyer lift to fit under. But I'm nost sure if I like the depth of the clawfoot tubs. I need to see some in person. Don't want a walk in, Jake can't walk. LOL Don't want a shower, because he's in diapers I like his bottom to get soaked. The clawfoots are SOOO expensive compared to a standard tub though. ARGH.

#9- Build a changing table with storage underneath. Right now, we drag Jake nekkid thru the house after his bath, and dress him in the living room. Not what we want to do since he's getting older, and with Katie here too. He needs some privacy, so I want him dressed in the bathroom.

#10- Tile the floor.

I think that's it. Can't wait for them to get started!!

Butterfly Outfit for Katie

2009-06-03T20:31:00.002-04:00

The shirt is Otto 3/2008 Puffis. I cut the ribbing for the neck at 3.5 INCHESand it was supposed to be 3.5 CM.. oh well. The butterfly emb is from emb limbrary.

Shorts are Otto 3/2009 Bert. I didn't do the waistband as the instructions called for. I did it the way I prefer to do it. I may try it the other way at some point but I was pressed for time and didn't have the right elastic.

Emb on the back pockets I did by hand (obviously! LOL) I was going to do the front pockets too, but it was just too time consuming!!

I like the length of the Bert shorts better than what most of the other Otto shorts are. Easy Peasy pockets too!

I wish I could sew faster and I wish we went more places in order to need more clothes, because each new outfit is met with smiles and "pretty clothes" and now she is learning to self dress (and undress ARGH!!) and when she sees the clothes she starts trying to strip!!! LOL Luckily she can't totally undress if she's in a Onesie!!

Update on the kids

2009-06-02T18:49:00.005-04:00

Katie developed a rash this past weekend. 3 times, each after eating Rice Krispee Treats within an hour or so she broke out in maybe hives? I'm not sure, I've never seen hives. We are thinking she might have a rice allergy. Not sure. She's never had rice before that I'm aware of. She'll need to be tested. Here's a pic of her rash.

Jake has developed a swollen looking area under his left ribs. We've been for xrays but haven't gotten any results back yet. :-(

"Hoverrock" - new outfit for Katie

2009-05-26T18:22:00.002-04:00

I just got this outfit finished up. The shirt is by Ottobre and the overall is the "Hoverrock" by Farbenmix. I'm not happy with the shirt, but I love the overall.

Day for People with Disabilities @ Norfolk Zoo

2009-05-18T08:56:00.002-04:00

We went to the zoo Saturday. Good news /Bad news I guess. Bad news is that Jake was miserable the whole time and screeched and cried and bit the entire time... FUN. :-( He did the same last year, so we don't plan on taking him back. But the good news is that Katie DID seem to enjoy it. And if it weren't for Jake and the rain, she might have had really gotten something from it. So we DO plan on taking her back, maybe Wednesday.

Now Jake has a virus

2009-05-09T09:46:00.002-04:00

He was up all night vomiting every 30 minutes. Do you have any idea how hard it is to hold up a nearly 100 pound body, while they're vomiting and fighting you and trying to bite you? Good grief!!! It honestly takes both me and Mike to hold him up and try to catch as much of the vomit as we can!!

Have you ever seen one of those movies where someone vomits and it's obviously a hose shooting out the fake vomit.... yeh, that's what happened... all down my legs! I've never witnessed anything like it before in my life!

He woke this morning with a fever. He crawled over to his board and hit I want pop. So I gave him a couple swallows of Pepsi... and he promptly gave them back to me!! YUCK!

Mike had to work today, wonderful timing! He's always off on Saturdays except today!!

Katie's still sick and had a seizure

2009-05-07T20:19:00.002-04:00

She's been sick since last weekend. Fever, snot, coughing. I took her to the doctor Monday. While waiting in the office to be seen, she spiked a fever to about 103. The nurse stepped out while we waited for the doctor. While we waited, Katie had a seizure. I was holding her (thankfully she's still small) and I stepped out and found the nurse in the next room. Funny, me, the parent, was calm as could be, but the medical professionals were in a tizzy!! LOL 3 nurses and the doctor all huddled over us!! Guess they don't see that kind of action very often! LOL

They got a fan and a wet rag to bring her temp down and put her on oxygen.

It was 4 minutes of arms drawled in, eyes rolled up, repetitive forceful jerking, no breathing. After 4 minutes, she started breathing again, and vomited. I called her name and got down in her face. She tried to look at me each time I called her. Her panting would slow a bit. You could see a tiny bit of recognition on her face and she would turn her eyes toward me, but never make it all the way to me before they would start to drift back to the side. Her hands were still drawled into her chest and they shaking. And she was constantly smacking her lips/tongue. Her tongue never came out of her mouth, and it was clicking or anything. It was kinda like if you have a taste in your mouth and you're trying to figure out what it is, or maybe peanut butter stuck to the roof of your mouth. It was definitely still seizure, just a different type. She stayed like that for several minutes, I didn't keep track. Then she fell asleep for a couple hours and we stayed in the doctor's office with her sleeping and on oxygen till she woke up.

We declined going to the ER. There really was no need. Once she woke up, the doctor did an exam and really didn't find anything wrong (other then the cough and runny nose)... ears looked fine. Throat looked fine. Negative for flu. CBC showed slight (whatever they look for LOL) indication of it being bacterial, and not viral. She put her on an antibiotic.

She's been on the antibiotic since Tuesday and she's still quite sick. Not as high fever, but still a low grade fever. Her cough is 100% worse, but her nasal drainage is better. Monday night and Tuesday morning she had several very small minor myoclonic seizures, but no more big seizures thank goodness! We go back to the doc tomorrow (Friday) afternoon.

Jake is also coming down with it, but the doc went ahead and prescribed him an abx as well to nip it in the bud.

The most awesome commercial EVER!!

2009-05-02T19:55:00.002-04:00

The most awesome commercial EVER!!

Jeans & a shirt for Jake

2009-04-28T09:17:00.002-04:00

First up, just another Onesie. Yes, they are just about all I make.. and just FYI- I have 3 more coming up to SNS this week LOL, but I will be sooo glad to get them done! All that's left is the ribbing. Anyhoo-

And these jeans... oh, man these jean!!! I had such high hopes for them!! They drove me crazy!

Otto 4/2006 Cargo Pants.
Pattern goes up to a 146. I graded up to a 152. I was very diligent and measured accuratly. I KNOW I did it right... but let me tell ya... I think I could have went with a 140 or less with these! I mean I know they are a Cargo but crikey they swollowed him!!

I ended up having to rip off the waistband, take an inch off of the width of both sides (of the jeans , not the waistband) I only trimmed down the waist/hips, I didn't take them in all the way down the legs, though I could have, but I just left that baggy.

I also had added to the back rise to cover his diaper. I got the measurements correct in the back, covers his diaper great, but I had to add to the front rise too in order for the side seams to be level. Which brought the front rise nearly up to his chin LOL, so I kept the side seams the same but "dipped" out the front about 1.5 inches. That worked really well and I will probably do that more often.

{{I HATE doing back pockets and refuse to do anymore }} I forgot the back pockets, oh well, I'll remember next time {{yeh, that sounds convincing enough}} LOL seriously though. He sits in a wheelchair all day, no one sees the back of his pants!! Besides, why put any extra bulk or creases back there when he sits on his bottom all day, I doubt it's too uncomfortable, but he can't tell me if it is, so why put it?

And me oh my! I tried fading these with some bleach pen.. it worked great!!!! Until I got the great idea to scrub it with my fingernails to work it into the fabric... DO NOT do that!! You should just wipe it on with a sponge! So I had to cut the legs off and redo- them. That's why the different color of the top and the bottom. They weren't supposed to be 2 pieces with the topstitching like that. I haven't bleached the bottoms out yet. I don't know if I will. I don't want to screw them up again. I'll probably just leave them as is. He has a tray over his lap most of the time anyway.

You can kinda see on the pic of the back of the jeans where some of it looks ok faded, but on the right side toward the bottom, it's streaky... times that by 50 and that's what the front looked like,

Oh, I didn't add elastic at the bottom or do all the extra pockets on the legs like the pattern has. I just don't like those things on jeans for big kids. That's just me

Anyhoo- On the the pics!! The flash makes the color difference much worse than in real life.

Special Olympics 2009!!!

2009-04-24T16:24:00.004-04:00

Jake had fun, of course. Katie on the other hand, while I thought she would love it because all of the other kids.... she had a really difficult time. She can't tolerate applause or cheers, and well.. that's what Special Olympics is all about. LOL Every time the crowd would cheer, she would either go into startle reflex (not sure if it a seizure) Her arms flail up to her head, arms and legs shake, eyes bug out. And if that didn't happen, she would still scream and cry.

Anyway. Jake flapped away! He loved it. He did the 25m wheelchair race. The tennis ball throw. And the softball throw.

Katie's 1st Field Trip

2009-04-21T19:51:00.005-04:00

Katie had her first school field trip today. We went to the fair grounds and had a tour as the 4H were preparing for a livestock show (that will be later tonight). We saw goats, sheep, cows, and pigs.

Trying to sign "sheep"

Trying to sign "goat"

PJ pants for Katie

2009-04-12T21:36:00.003-04:00

Got these sewed up just in time for the end of Stash Game. She will wear thru the knees so fast, I'll be sewing more in a couple weeks!! That's ok cause it was a super easy pattern. Another Ottobre of course!! The Lily Leggings. 2 pair were made according to their pattern and the other 2 , I adjusted and added 2 inches in the width of the leg. I wanted a less fitted legging. More of a lounge pant, but I didn't want to have to trace out another pattern, so I improvised! I also add a half inch to the waistband and used 1 inch elastic instead of 1/2 inch and I add diaper allowance to the rear. Next time, I'll take off an inch or 2 in the leg length though.

And here is a pic of her modeling the one of the pair that were a tiny too snug. I will probably end up slicing them up the outer side of the lag and adding a 2 inch paenl to each leg.

This week's sewing

2009-04-10T16:39:00.004-04:00

Katie got 2 new onesies and a summer outfit.

Jake got a new seatbelt cover.The standard kind that you buy at the store are useless. They're too short. They crawl up behind his head or down on his tummy and he isn't able to put it back in proper place. And his neck gets all scratched up/ rubbed red by the seatbelt and he can't move it. So I made him a long one.

So what's up?

2009-04-08T20:18:00.002-04:00

There's been several things I've wanted to post about, but kept putting it off and now I've forgotten what they were!! LOL Guess I'll start with Jake. He had an appointment with the orthopedic surgeon. Doc said Jake's back looks very good. He tiny bit of scoliosis has not gotten any worse. YAY Also he said that his hips look good, sitting well in the socket and also he isn't really a candidate for tendon lengthening because he sits 99.9% of the time. He doesn't walk.So of he had the lengthening, because of lack of use, they would revert back to being tight.

What else? Hmmmm... Well. He has a horrible horrible cough right now. Scary sounding really. No fever. No upper respiratory congestion. Just a deep deep cough. Our doc doesn't see walk in's on Thursday so, we'll see how he does tomorrow. If he's not better by Friday, we'll take him to be seen (hopefully they will be open, it'll be Good Friday)

And Katie. Wow! She's really doing great! The other day, I sewed up a new outfit for her (I'll post it tomorrow :-) When I showed it to her, she signed "clothes" and then "pretty" and hugged the outfit!! How cool! And how sweet!! She also she made up a sign for piano (just so happen to be the correct one! But she has never seen it signed) She was trying to get her piano out of the toy box and couldn't, so she thru a tantrum and when we asked what was wrong, she signed piano! We asked "piano?" and she signed yes. Also, we watch a video often of a man playing the piano that Katie loves. She crawled into Mike's lap and did that sign and turned to the tv. We asked if she wanted to see it and she signed yes!! And then for the coup-de-gras... today we were on the road, we were going to Target. I said Target, and she started signing piano!!!! She always gets to play the piano (keyboard) at Target!! How in the world did she understand that!?!?!?!?! I could have died!!! It was awesome! Of course I told her yes!!! She is understanding so much lately!!

Well, he walking isn't great lately, but once it warms up, we'll get more practice in. She did ok today in therapy going up stairs. Very good really. Not so much going down, as she can't release her leg muscles on the back leg once she steps down/out with the front leg (make sense?)

Me?? I'm still sewing. Playing the Stash Game. So far I've sewn 3 Onesies, 2 pair of shorts, and 2 shirts all for Katie. Also a table skirt for my sewing room. And a seatbelt protector for Jake. Tomorrow I HOPE to try to draft a pair of unders for ME! And also some Hiney Hiders. I'll get some pics of what I have sewn this week up tomorrow!!

Well, I guess that's about it for tonight. Gotta get ready for LOST!!

Stash Game Day 1 & 2- Ottobre fot Katie

2009-04-02T17:58:00.000-04:00

Stash Game has started... IT IS ON!!! Yes, I am lame. LOL :-) Stash Game is something we play occasionally on SewingMamas.com where you try to sew as much as you can. I typically SUCK at it as I don't have a lot of time with Katie here all day, but the kids MUST have some clothes, so I'm trying......

Woo- Hoo!! I got a whole outfit done for Katie!!! And a onesie.

Denim shorts- Otto 3/2006 #10 "Colorful summer pants" sz 104, fit pretty good, I just got the elastic a little too loose. I think I am going to add some belt loops. All the top stitching is triple stitched!! I like the look a little better than the single thin line. A little wonky in places, but not too bad!

Top- Otto 3/2008 #12 "Strawberry Tunic" sz 104, shortened quite a bit. I measured off a RTW that fits well in length. I also took in a little of the width of the tunic flare. (not the over all width thru the chest, as she is broad, but it was just too dress like)

Pink Hippo Onesie is Creative Workshop 301 sz 104 tshirt, altered into a onesie.

Katie's spasticity is getting worse

2009-03-29T20:13:00.002-04:00

The spasticity in Katie's legs is getting increasingly worse. Her hamstrings are a little tighter but the main issue is with her gastrocs (ie- calf muscles). She has fair range in her gastrocs, as long as her hamstrings are not engaged. But when when you make her straight legged at the knees, you can't get her ankles even to neutral, must less past it. And basically to stand and walk properly, your leg/knee area must be straight and you need your ankles to go to at least 90 degrees... OR what do you get??? TIPPY TOE WALKING which is not good. So far she is not toe walking, but she is toe standing when she is not in her SMO's (braces). Her SMO is keeping her at 90 as long as she is wearing it but she doesn't wear them day.

So the plan is lots and lots of stretching and much more time in the SMO.

Tantrums

2009-03-14T08:18:00.001-04:00

If any of you try to tell me it a GOOD developmental milestone, I swear I will jump thru this internet and wring your necks! LOL

Katie has learned how to throw a full on temper tantrum. It's driving me nuts! Dozens every day now. She screams and screams (not just cry), crams her fingers in her mouth and bites them, screams some more and then, in what I can only imagine is telling me off LOL, puts her signing to work. Her hands and fingers start flapping and flailing in a manic fit, all the while screaming at me. It's a site to behold. I have no clue what she is trying to sign. I can't decipher any true signs, but she definitely is saying something!! And when I tell her no, she shakes her little fist at me (signing yes). And then when I use the ugly mama tone and tell her to stop, she falls over weeping silently. And breaks my heart.

It was cute/funny the first couple times. But I think I've JUST about had enough.

Running total :-)

2009-03-13T06:26:00.005-04:00

K is still doing great with communication!
Here's a running total. The list was first posted on July 30th, 2008.

Signs- 7/30/08
mama
more
open
eat
cracker (also used for cookie)
finished/all done
up
go
color
night night
apple
drink/pop
milk
hair/head/hat
bath
shoes
diaper
ball
bye-bye
socks
thank you
car
block (occasionally)
dog
fish
swing

from here on, will be listed as they are learned
please Sept 2008
hurt Aug 2008
my turn Aug 2008
stop Sept 2008
help Sept 2008
clothes Oct 2008
yes Oct 2008
school Oct 2008
see you later Oct 2008
Happy Birthday Dec 2008
pizza Dec 2008
bean Dec 2008
pretty/beautiful Dec 2008
airplane Jan 2009
bike Jan 2009
cold Jan 2009
warm Jan 2009
outside Jan 2009
time Jan 2009
music Jan 2009
cat Jan 2009
"L" (Elmo) Jan 2009
water Feb 2009
red Feb 2009
cake Feb 2009
sun/shine Feb 2009
snow Feb 2009
sheep Feb 2009
write (uses same as for coloring but has learned it also means write) Feb 2009
Teletubbies (we shake the letter T... yes, I know this means potty LOL) March 2009
Oobi (open and close your hand like a puppet talking) March 2009
green March 2009
orange March 2009
play March 2009
wind March 2009
game March 2009
purple March 2009
nice/clean (same sign, but she does understand both words separately) March 2009
dance March 2009
white March 2009
jump March 2009
love March 2009
I/me March 2009
you March 2009
play March 2009
banana March 2009
hot March 2009
cup/bottle March 2009

11/03/08
Katie has started putting 2 or 3 signs together and signing sentences! It's really cool. So far, she has signed

Eat more, please.
More drink.
Cracker, please. (LOL)
Eat cracker.
Please, eat cracker.
Yes, eat.
Yes, eat cracker.
Yes, drink.
See you later.
Help bike.

Updated 12/15/08- Katie is now totally silent. She no longer any attempts at speaking. :-(

Sounds/Words- 7/30/08
muh muh or maw muh (mama- this is the only consistent one)
mia (milk- said once)
uh (up-said a few times)
mama uh (mama up- said once)
da puh (diaper- said a few times)
buh (ball- consistent)
baa (bath- consistent)
bahbuh (bubbles- said a few times)
uh (I- said a few times)
wun (want- said a few times)
go
buh buy (bye bye- said a couple times)
bawb or bob- (pop- as in soda pop)

eh-ma (Elmo)- 10/06

Katie's new wheelchair! :-)

2009-03-09T18:57:00.002-04:00

We have been so excited! That's crazy, right? TO be excited over your kid getting a wheelchair. LOL Anyway, we got it today. She really seems to like it and can already push it pretty good. She's a bit weak and can't steer, but did ok. The little wheels on the back... they light up/flash when you push the chair!! Which is neat, but I don't recall them asking if we wanted them. If I were someone not as confident about my kids issues, those bright flashing wheels might have upset me. I don't care if people look, but someone just starting out on the special needs journey may not like the attention that it causes.

I think it's great. I heard half a dozen kids between the hospital, Walmart, and Target all comment on how cool they looked. I tried to get a pic, but it wouldn't take.

She was really too big for the Kimba stroller she was in, so this was really needed.