Katie's Thanksgiving Shirt

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

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

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

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

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

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!

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

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

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.