Computer games for the challenged...

I've been looking into computer games for Boo. There is an OK selection out there, which is nice. I'm so tired of the TV babysitter. I got Daddy to adapt a mouse to use one of Boo's switches and downloaded a trial version of one of the games I'm considering.

I think he likes them! We need to get an adapter for the mouse that now works with his switch so he's trying to use a standard mouse. It's a bit challenging but he's only got to click it on either side so he's doing pretty well. Looks like I'll be ordering that game and maybe a few others. Thankfully they're reasonably priced between $30-$60. It's a lot of money but most of them have several different games on each disc.

Too much to do, too little time yet again

Being a full-time student, full-time mom of unique children and a full-time wife is wearing me out. Gracie now has the Flu (thankfully she's doing well otherwise) and Nikolas is brewing something but we don't know what.
I took 4 classes (16 credit hrs) this quarter. I think that it wasn't a good choice for me. I am quickly losing my momentum and just want to finish the Occupational Spanish certification and go back to being a Medical Assistant. I do like Massage Therapy but I'm just not into the college thing. I don't know where my longing to do this went. I feel like 2 of my classes are a bust...I'm not learning anything in either one. To be fair, I have missed some classes but even when I am there I don't feel like I'm learning anything. I'm not the only one so if I can just stick it out this quarter and wait for Shannon to come back maybe it will get better.
Massage Therapy will be so much more flexible for me but after spending so much time in doctor's offices lately I really miss working there. My biggest issue is finding part time. That's almost impossible. I'm not sure what I'm going to do but something will have to give. I can't continue to stretch myself like this. It's not fair to any of us and Jim gets the least amount of attention mainly because he's a grown-up and can deal with it (whether he wants to or not-I did for ages while he built a company-it's my turn now).

Mitochondrial Diseses

We now have 2 more disorders to add to the rather complex list.

 Mitochondrial Complex 1 and Complex 5 deficiencies. Most of the information I found last night was so clinical. I'm looking for information that is in layman's terms so I can explain it to my family and figure out a plan of action. If anyone has any good (or bad for that matter) ideas where to look PLEASE PLEASE let me know. Also if you're dealing with this or have friends/family who are please send me to their blog. I'd love to get another parent's point of view and see what I can gather from them.

Thanks! Enjoy your weekend...I'm going to "just breathe" for awhile.

More minor surgery...

Well Boo did great on Friday. He had a muscle biopsy for diagnostics. We're hoping that this will tell us what happened to cause all his disabilities but there's still now guarantee. Really we're hoping that this will give us a plan of care for him.
They took out 2 pieces of muscle that were about the size of a dice (each one!). He's done a great job. He's not been too grumpy and is sleeping well so now we just wait for the results. Again. ;)

Another job interview

Well I had a job interview a few weeks ago with the local hospital. I was one of 2 "finalists". I didn't end up getting the position. It came down to me not having "current" experience. Well I've been home with my disabled 6 year old soooo my experience in a PAID position isn't current but I have plenty of experience with Medicaid, insurance companies, and lots of people skills since we have so many different kinds of people we deal with for all my kids health issues.

Now, I have a "second" interview on Monday with an in-state small company that provides in-home care for waiver clients. It's actually a perfect position for me (weekend only) and I hope I get it. Basically I'll be getting paid to do what I already do but for other people besides my son. Keep your prayers coming and your fingers crossed. I'll let you know when I do.

MRI's & EEG's

Well we're finally home from the hospital. Boo had a 24 hour video eeg and a sedated MRI. The VEEG was so boring! You just stay in the room and they video everything he does for 24 hours. He did have some "events" one the screen but I think they are probably subclinical seizure activity. He's grown & gained weight but we haven't upped his medications so it's probably time. I don't mean to sound like I don't care, I do. It's just that we've been doing this for so long I'm tired of the "let's try this or test that" and still no answers. As long as his seizures are controlled I'm OK and letting God deal with the rest.
Anway, after they disconnected him we went down to MRI so they could sedate him and do that. Once again he "politely declined" to wake up after the procedure. I warned the anestheologist, she assured me this gas wouldn't do that...ummmm well it did. I asked what she used so I could add it to my list of things not to use again but no one could tell me so I get to research that later. His vitals looked great but it took 6 hours for him to wake up so I'd rather not use it again.
I understand that it could be a few days to a few weeks before we get the final test results...have I said how much is dislike waiting for test results?
Well, the kids are on spring break this week and our 9th anniversary is Wednesday so I'm planning to just spend time with the kiddos, sew, and enjoy the 3hour respite we'll have on Wednesday. The answers will come when they come...worrying does no good. Enjoy the rest of the weekend...I'm going to. :)

Ahhh....too much stress!

Oh the stress of new adjustments. They simply stink! Especially for someone like me who's a bit OCD. (DD's asperger's isn't a helping either...bless her heart.)

It's such a change to have MIL here full time. DH is all about making her feel welcome and at home (as am I) but he doesn't realize how he's making us feel in the process. (Let's just say it isn't so welcome much of the time.) It's just hard for him to see her deteriorate so much and I'm doing my best to be understanding and trying to help DD understand. Our little house is too little sometimes and there is no where to "get away" for a few minutes. Having 2 people who are pretty disabled is very challenging and the snow isn't helping.

We're trying to find things for MIL to do so she can keep some independance but there just isn't much and she's refusing to do much but stay in bed and sleep. I know we'll figure it out. It just takes time. I would really like for her to stay here until after SIL has had her baby and a week or so to bond & enjoy being a new mom. She's going to have enough to adjust to before her mom comes to stay with her. We'll see I guess.

Diaper Pictures

I promised earlier that I'd post a picture or 2 of the new diapers...so here they are!

Later Gator cotton knit outer-super popular print


Cotton velour inner-gives a dry feeling & absorbency


I love the way this came out even though I rarely serge diapers. I usually prefer a turned & topstitched look but this was mainly for fit/sizing so serging was faster.

I am also loving how much stretch the knits give. For some reason I've never made a fully knit fabric diaper. I'm not sure why but I'm so glad I did. This will fit him for ages! There is so much stretch and flexibility with the plus they wash & dry so quickly since they are pocket dipes. We're using a wool cover and these are bullet-proof-NO LEAKS!! His disposables (ewww!) are now causing rashes and still leak even though they are a "quality" brand and made for kids his size. We're going back to cloth full time as soon as I get more made. No more paper undies! After all we don't wear them, why should our kids?

Pneumonia....grrrrrr!!

Well we've spent most of this week battling pneumonia. Boo's done more breathing treatments and taken more antibiotics than should be allowed. The upside is that we didn't have to go to St. V's.
We ended up at his re-check today (yep, 4+ inches of snow-no plowed roads & we went to the doctor). After fighting the crazy folks for my lane of the road; we got to the pediatrician just in time to watch someone slide right into a brand new Caddy! No real damage & no one was hurt. We managed to get parked and inside without getting too snow covered.
So here's where we are...
We get to start weaning down the breathing treatments. We only have 4 days of 2 different antibiotics left and he gets to go back to school on Wednesday (if it's open). We have to keep doing the pulmicort 2x day until who knows when but it could be worse. He's feeling better so we may start using his stander again in a few days. Right now we're only sitting up in the feeder seat or laying down.
We were supposed to go to his sleep study tonight but with all this snow we had to reschedule. I wanted this to be read & back to Dr. Lisa before his appointment in 2 weeks but they couldn't reschedule until the day after his neurology appointment. The doc will call if anything is weird but I like to be able to discuss the results since the nurse who calls results isn't very knowledgeable and not so great about getting back to us. We haven't had any more regression so I guess that's a good thing & I doubt the sleep study will tell us much anyway.
Maybe the intensive therapies we're planning for the summer will help bring back his communication and build up his strength. I really hope he can get that back. He's still such a happy little man but I want him to be able to let people know what he wants or needs. Unfortunately I can't be with him 24/7 and sometimes it even takes me a while to figure out what he needs. Time...we just have to be patient, get him completely well now and figure out the rest later. :)

I finally got to....

Sew....yep, uninterrupted sewing. Almost 3 whole hours of it! I know it sounds cheesy but it was nice to shut the door and just sew. I made a modified pattern and 2 tester diapers for Boo. They came out really cute so I'll take some pictures and post them tomorrow.

I finished them and came down just in time to watch the Super Bowl. Our Colts didn't come thru. :(

I'm not a sports nut though so I'm happy for the Saints. It was their first trip so it was a good thing. Still, it would have been seriously cool to win again. :D

I really am going to sew...

Well, I decided to reopen the Etsy shop to try to bring in a bit of extra cash. Then, I found StalkShop and decided to open one there as well. It's new and still really small but it has huge potential so I'm going for it.
Now comes the change of plans....a family issue has reoccurred. My MIL has come to stay with us for a while. She will be moving in with my SIL but since SIL is in the process of a state to state move MIL will be with us for a while. SIL is expecting so she has to get moved, settled and ready for her son to arrive before MIL can move in with her. What a mess!

I don't mind a bit that she's staying here...she seems much more relaxed and I know DH feels better about her care. She pretty much does for herself but her communication is still difficult. Still she's already doing better. She wasn't overly thrilled about coming but realized it was for the best. I don't want her to feel like a burden...she's not. I feel better being able to see how she's doing since I tend to be the one dealing with her meds and such.

I think the biggest issue she has about being here is that she feel like she's in the way. I know it bothered her when we rearranged the house and gave her our bedroom. We just moved our stuff upstairs into the sewing room and I crammed it all in the closet for now. :)

I'm noticing a lot about her abilities and issues. She's not using her right arm at all and the hip is a bit achy. Still, her "non-cooperative" right side doesn't slow her down that much. :) We've tweaked her daily meds and she seems to be feeling better. I'm not sure how much of that is the med changes and how much is just getting out of the situation she was in. Either way she's doing better now.

It's nice for her to get to spend more time with DH, the kids & me. She hasn't been able to for quite a while now. Her being here also lets me be sure that she's not over or under medicated and that she's eating better.

Anyway, that's slowing down the sewing I was going to do. I figure I'm going to sew some to de-stress then I'll go back to cleaning and rearranging and de-cluttering this teeny tiny house. Life handed me a bag of lemons and I'm determined to make some sweet lemonade one way or another.

A new year and a new endeavor...

It's a new year and I need a new "something". I've decided to start sewing again and I've opened a new shop. :) Suzanne's Special Kids at StalkShop.com http://suzannesspecialkids.stalkshop.com
I plan to start stocking it later this week. I'll be doing cloth diapers, wipes and g-tube pads in toddler thru adult sizes. Infant diapers will be custom orders in the Etsy shop for now. 2 shops and a lot of resumes out should hopefully bring in some income for us. Keep your fingers crossed and prayers coming.
Thanks and have a wonderful day!

Day 4

Today is bonding day for Nikolas and the grandparents. Mikayla and I are going to Universal Studios just the two of us. We’ve been there before and I know that there really isn’t anything for him in those parks since he can’t play on the playgrounds and isn’t interested in most of those characters.
I reminded mom how to use my camcorder and after breakfast we were on our way. Today mom, dad and Nikolas are going to explore GKTW and take some pictures or video while we’re gone.

We got to Universal about 11:30 and went straight back to the Mummy. It was the only thing I “had” to ride. It was the only ride I hadn’t ridden last time we were there so it was a MUST DO for me. Mikayla had pretty good memories of what she liked and didn’t like to after riding the Mummy and deciding she really did like it we made a loop and started riding.
We started the loop with ET, which is really cute, then went over to the Simpsons. I’m not a huge Simpsons fan but that is a virtual ride and it’s really fun. We went over to Men In Black, which Mikayla remembered and wanted to ride again the skipped a few and went to Jaws. HINT: If you take your kids on this be sure they know the story behind JAWS or let them watch it if they’re older. I took her on this ride and the man running it was actually from our home town. It was funny since the first thing he said was that “no one is from Shelbyville….” my thoughts exactly! When that was over we moved on to Disaster…we found it rather dull and don’t really recommend it. Moving on we did Twister again and then Shrek for the first time. Shrek is really fun and one of the rides we’d both recommend to everyone. One last ride…Jimmy Neutron…we forgot Terminator and never even went into Islands of Adventure. Like I said, we’ve been there before and there aren’t a lot of things we like to do since we aren’t big coaster people. We were done there by 3:00 and called to have mom order a late lunch from Katies Kitchen. We just went back (oops-there was confusion so we stopped at Taco Bell) and rested for dinner and Christmas at the Village.

Christmas and Santa were AMAZING!! They even created snow for the kids. Santa is willing to hold any child you are willing to put on his lap and that alone was nice since so many people are leary of holding our kids with all the equipment some of them have. We got some neat gifts and went outside to play in the snow and see all the decorations. We met up with Cathy and the kids and had a blast. She got some cute pictures of the kids playing together. It’s a really nice way to spend a special evening with your kids and we had a wonderful time.




-If you only go to 1 or 2 of the evening activities....make sure that Christmas and Pirates & Princesses are it. They are amazing and all kids are very included in everything. They were very theraputic for both of my kids. They never once felt like outsiders for a change. :)

Day 3 continues...

After Peter Pan we started toward Mickey’s Toon Town Fair. When we passed Ariel’s Grotto we notice that she was there and stopped for some really nice photos and a meet-n-greet. My son is such a flirt! He was laughing and grinning at nearly everything she said or did. It was really nice because this was a character Mikayla wanted to meet last time and we kept missing her so now we have the much longed for autographs!



We stopped for a photo in front of the sign and started the character meets. Today there was Tink, Fawn & Terrance and Belle, Aurora and Cinderella at the Hall of Fame tent. Nikolas liked Fawn but wasn’t too impressed with Tink (I think she was too intense for him though I don’t know why since his sister is just like that….maybe that was it?). He did seem to like Terrance and we got a pretty nice picture for the album.







We went in to see the princesses next. We had to wait for awhile (we actually were forgotten but it wasn’t a problem). While we waited we met a wonderful family with a service dog. Their dog is an assistance and seizure dog which is what we will be looking into in a few years. They said it was the best thing they’ve ever done and that we won’t be sorry when we get ours. Their dog is a border collie but we want a german shepherd. I know it’s unusual but we had one we were training for that and he passed away at 3yrs old. I just like the breed, size and intelligence of shepherds so that’s what we will have trained.

After asking how much longer the wait was (it was over 30 min by then) we were taken back and got to meet their Royal Highnesses. Once again he was flirting up a storm with the pretty princesses who were so focused on him. We got picture with Cinderella, Belle and Aurora. I love the one with Aurora because we have that exact same pose with her from 4 years ago. That was totally unplanned but really nice.







After his flirt session with the princesses we shopped for a few minutes then went next door to meet Mickey and Minnie Mouse. Boo seemed to like Minnie but was really excited to meet Mickey again. This time he was dressed in regular clothes not sorcerer ones! Mickey and Minnie signed both autograph books then we left to ride the train. We hopped on the train and rode around to Frontierland so Mikayla and I could ride Big Thunder Mountain Railroad. Mom and Dad took Nikolas wandering while we were gone. It was getting a later now (a bit after 6pm) and Mom was getting too tired so we started out of the park. She hadn’t ridden Pirates yet but since we were coming back on Saturday we didn’t worry about it. I did get them to stop for a picture in front of the castle while it was all lit up and just dark enough to get a really nice picture (after LOTS of tries).
Time to head back for dinner and a decent night’s sleep.

Here's the beginning of our trip report...

OK, this trip report is gonna be long so I'm going to break it down into tons of posts. They will be the same as on the DisBoards so you won't miss anything if you don't read both.

Well, here goes….

Day 1…Time to leave!
I had to be up at 3:00 am and the kids had to be ready by 4:00 to meet the limo. It was right on time and got here at 4:15. :)
I admit I was worried because another Wish family left the week before and the limo was an hour LATE!!! We did all our boarding passes and baggage payments online the night before so we had some “wiggle” room but I was still a bundle of nerves.
I don’t have any limo pictures since it was so dark still-sorry! Mikayla was excited to ride in the limo but Nikolas was unimpressed.
I thought for sure Nikolas would sleep but...not a wink. Getting to the airport and thru security went off without a hitch. We got loaded on the plane and I got the cutest picture of Nikolas waiting for us to take off…



That last one was taken by me as we were about half way thru take-off. He LOVED the feeling I guess. (btw..it’s about 7:15am & I’m soooo tired!)
The plane ride was uneventful except that the pastry & iced coffee Mikayla got from Starbucks made her a bit queasy on the plane so she sat with her head down for about half of the flight. I warned her about too much sugar…mom’s don’t know anything do we? Hehehe..
When we landed in Orlando we had no trouble getting to the GKTW greeter. He was a very sweet older gentleman whom I believe knows everything about that airport. We found the luggage and got our van in the blink of an eye.
Finally…we were off to Give Kids The World!!!!

We're back!

OK, this was an AWESOME trip! While I would NEVER wish illness on a child (or anyone for that matter), if your little one has a life-threatening diagnosis....please look into a trip to Give Kids The World. There are many Wish foundations that can send you there. They are completely set up for our kids....lovely villas with huge bathrooms that are completely accessible (I wanted to bring that bathroom home with me!).
They love the kids and it shows every second of every day. Most of the people there are volunteers and they spoil everyone in the family. They have activities every evening that completely include ALL the children no matter how differently-abled they are. Santa comes and will hold any child you bring to him. A beautiful little girl on a vent was a few people before us and he told her momma to "bring that little one here so I can hold her". It brought tears to my eyes! Many people are so afraid of our kids but not there. Mayor Clayton (a 6ft tall rabbit) dances with the kids and interacts fully with any who want to try.
I'm getting ready to start my trip report on the DisBoards. I'll also post it here for those who aren't on there. It's going to be in phases and I'm trying to go day-by-day with pictures. Our PhotoPass CD from Disney has been ordered so there will be pictures too! :)


I took mostly video but there are random pictures I'll add as I load them. Have fun and enjoy reliving our trip with us!


Our first photo is of Boo waiting for the plane to take off...


I think he's just a little excited....what do you think? hehehe!

3 weeks!!!

It's only 3 more weeks until we leave! Exitement is really picking up here. I've got so much to do and so little time to finish all of it. Nikolas doesn't really understand "we're going to Mickey Mouse's house" but we tell him every day and he just smiles.

I made reservations for November 3 at Play-n-Dine so he can see JoJo and Goliath. They are still his favorites. :)

I've kinda planned which parks will be on what day...at least tentatively. Our wish volunteers are supposed to come to bring our documents a week or 2 before we leave.

Nikolas' CICOA case manager called today and our lockdowns for the van and his new special needs stroller have been approved so if we're really lucky we can take the stroller and rent a regular minivan instead of a lift van. A lift van would be nice to try but it's a lot more expensive. I know we aren't paying for this but there's no reason to be greedy. I wish I knew how much spending money they're giving us and what other things they've planned. I hear Give Kids the World do all kinds of special things too but I'm not sure what'll be going on when we're there. I think the surprises will be wonderful but I have a hard time not being the one doing the planning. It's the OCD in me. :) I'll be back when I know more!!

Make-A-Wish came to our house!

Guess what!?! We're going to Disney World!!!!! Nikolas got a wish granted from the Make-A-Wish Foundation and that is what we decided to do. It's going to be Boo, Gracie, Me and my dad and mom. DH is staying home this round. We just had our volunteer visit and gave them all our information including when we would prefer to go. We had to give them preferred times and they will see what they can do. I picked the first 2 weeks of November, then late October, and last in January. I'll take whatever they have with no complaints though. :)
It will be nice to go and have Boo be able to do what everyone else is doing. That just doesn't happen very often any more. The volunteers that came were so very sweet, Boo got a "Cars" book and Gracie got a gift card to buy a new book (which she did and already finished-that girl loves to read!). Boo colored in his star while he was sleeping. Unfortunately they came while his chicken pox vaccine was doing it's thing so he was tired and a bit grumpy but all in all it went well. The star they decorate is for the volunteers to return along with a picture of the child so everyone can see who they are helping. This is a wonderful organization. If you ever decide you want to donate to a charity-donate to them. They go all out to make things wonderful for the Wish Child and the rest of the family. It's really nice that they do so much for the siblings too. I think that they tend to get lost in the chaos most of the time.
I don't know when we are going yet but I've been looking around on DisBoard and found out a bit about how some of this works. Mom needs lots of info (that I don't have) since we have to pay for her to go too. MAW pays for 2 adults and all kids in the household so my dad is filling in for DH and mom's stuff we pay for.
This is the general stuff you get to do. They give you 3 Disney World, 2 Universal and 1 Sea World pass. These are donated by the parks. You wear buttons that say Make A Wish and they treat you like royalty. I guess a limo picks you up and takes you to the airport and there are volunteers who meet you at the gates when you land to welcome you. We are hopefully staying at Give Kids The World. You've gotta check out their website...that place looks AWESOME! It's like a hotel and theme park all in one. There are so many other things they do for the kids...just go to DisBoards.com, register and read some of the trip reports from the wish families. This board is a great way to plan your trip whether it's just a family vacation or a wish trip. There are so many great ideas and people who can tell you how to find all these cool things that lots of people don't know to look for. Plus there are cast members (cm's-employees) that work at the parks who are on the board too. They also talk about all the other theme parks in Orlando so there is info to really plan a cool vacation. My user name is 2specialkids so when you sign up look for me! Oh and read Boo's pre-trip report...come help us plan a wonderful time for the kids!