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.

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. ;)

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. :)

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

What a stress filled week we've had....

Let's see, I've been absolutely terrible about keeping regular updates so that won't be a "New Years Resolution" again but I will try to do better so here goes...

The "good" news...

Gracie is doing pretty good in school right now. She still needs to get some help from OT but the school is still declining. I talked to her health care coordinator and we're working on a few options we have.

Boo is doing OK but he has a low grade temp and a cruddy cough so we're hitting the doctor in the morning just to be safe. I refuse to have a hospital stay because I didn't get antibiotics quick enough.

We had a lovely snow storm over the weekend. The kids even got to leave school early on Friday. It was only about 2 hours early so they don't have to make it up.

Last week my MIL came to stay with us for a while. She's going to live with or near my SIL later but SIL is moving to another state so she's going to get settled first. MIL may even get to be there when SIL has her first baby if all goes smoothly. That will be nice for both of them. MIL has been here for the baby time with both of ours so it will be nice to have that for SIL.

The "not so good" news...

Lastly, my wonderful grandmother passed away sometime Thurs night very unexpectedly. I think right now it's not really sinking in. I will miss her dearly...she's the only on who really understood the "mommy" side of having a special needs child. (You know "been there, done that" kinda thing.) My sister and I were talking about it yesterday. You see we have a rather different view of death. We both have worked with geriatric patients for many years and it's a part of life for us. I've been home for several years now but I still see things very differently than many members of my family do. I will miss her very much as I still do my grandpa but I'm not sad for her. She would have turned 79 in about 2 weeks. All in all she was pretty healthy and still able to be completely on her own. She drove herself and didn't need any homecare aides. She raised 9 children and helped raise many of her grandchildren and even great-grandchildren. She was here to see and hold some of her great-great grandchildren. How many people get to do that? She was able to complete her GED last year which was a huge goal for her. She's spent the last 2 years doing what she wanted when she wanted. I'm sad that she didn't get to go on the cruise my parents were planning for all of them this spring. I'm glad she didn't suffer-because I'm sure she didn't. I really feel that God called her and it was not a bad thing. Before my grandpa (her husband) passed a few years ago I was with him in the hospital and we were talking. I told him I wasn't ready for him to go and that it wasn't fair. He simply told me it was his time and he was OK with it. I guess that was all I needed to hear because after that I spent as much time as I could with him and when he passed, I was OK with it. My mother was able to spend most of the day with her mom the day she passed. I thank God for that. While we didn't get to prepare and say goodbye like we did with grandpa I know grandma is right where she should be and that she's happy now. There's no doubt. I will miss her as will all of my family but I am not sad-I refuse to be. She lived a long and full life. That is what I will treasure. I make a point of not taking note of dates when people pass because I feel like that is not what they would want me to remember or dwell on. Instead I choose to remember as many positive things as I can. From my grandmother I learned many things.
I gained a love of sewing, gardening, cooking, and family time. I see the importance of being there for your children passed down to my mother and then to me. I see many little things I picked up from her. I've really begun to notice them these last few days. Life wasn't always easy for her and grandpa. I know there were a lot more challenges than I will ever be told. I wish I had gone to Christmas last year and had her fill in a bit more of my memory book but unfortunately that cannot be changed. I will write what I know from memory and ask mom about the rest. We'll make note of what we can and the rest will just be unwritten memories. I miss you grandma and grandpa.

Sunday, Day 7 Downtown Disney and return home

Today we ate our final breakfast in the Gingerbread House and packed up our things. We decided to do some shopping at Downtown Disney since our flight home didn’t leave until 8:15pm.
We went to the kitchen shop first so I could get a few things. I’d really been looking for this Mickey Mouse apron and they were my last shot at getting it. I ended up with the display apron, some kitchen towels and a really cute set of measuring cups.
We split up and I took the kids to Pin Traders to get Boo his first lanyard and some pins. I’d gotten him 2 pins when we come before. We weren’t sure exactly what we wanted this time so we wandered and looked for quite a while. We ended up with 2 pins each, a lanyard for Nikolas & me, and 2 of the surprise specialty pins for the 10 years of pin trading.
After the pins we went to the Christmas shop and I bought a wonderful Disney frame for the excellent picture of the kids with Santa.
After a bit more wandering we loaded up and headed to the airport to turn in the van and wait for our plane. We got there about 3 hours early so there was a lot of time to kill. We grabbed some Burger King and went to our gate to wait. Mikayla and I went to the bookstore so she could get a book to read and way too soon it was time to board the plane.
We had such a magical time! I was definitely NOT ready to head back. As a matter of fact, Mikayla and I are already planning our next trip. We’ve decided to make it in either November or early December (probably 2011) so we can do some of the Christmas stuff.

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!

Saturday, Day 6 Magic Kingdom

This was our last day in the parks and I planned it as a special day for Nikolas. We took him on every ride and show he could get on and enjoy.

After another wonderful breakfast at the Gingerbread House we headed out to the Magic Kingdom. Mom & Dad went too so Mom could ride the Pirates of the Carribean and then to the Hall of Presidents. While they were doing that we took more pictures with Daisy and Pluto and in front of the Castle from the Crystal Palace. Then we headed to the Pirates for Nikolas. Captain Jack was doing a live show while we were getting ready for the ride. Mikayla got a bit of it on video while I got Nikolas in the mei tai. This way Nikolas was able to sit on my lap and really enjoy the ride.

Next we rode the Magic Carpets which was a lot of fun. When we got off we started looking for mom & dad but didn’t see them. We did see Jasmine & Aladin so we got some pictures and headed off to find my parents. We took them back to the villa and the kids took a short nap.



We went back late the afternoon, just me, Mikayla and Nikolas. It was a wonderful afternoon! We decided to take the ferry over this time. This visit will be all about the rides! We took Nikolas on everything we even thought he might enjoy-some things more than once!



We rode Pooh, Snow White twice, the Tea Cups, the Haunted Mansion, the Hall of Presidents (so I could feed him plus it is educational), Mickey’s Philhamagic, and Pirates again. We watched the fireworks and ran out of time to ride Pooh again. We took our time and strolled out of the park, stopping for several pictures in front of the castle and in the front of the park at the new Christmas scene. We finally left at 10:30.

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.

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!

Wish Trip Dates came today!!

We got the dates for the trip today! We're going from November 2 thru November 8. We will be staying at Give Kids the World resort. You've really gotta see that place...it's a theme park in itself. :)
I'll be sure to post pictures when we get back. There are so many things for me to plan (and pack). Make-A-Wish and Give Kids The World take care of almost everything but there are lots of things I'm learning about that will make this trip extra special.
If you're even thinking about Disney World or Disneyland then you need to go to the DISBoards and sign up. Be prepared to read, read, read! There is soooo much information but boy is it helpful and the people are so wonderful & friendly. Off to read some more...oh, and here is a link to our thread...
http://www.disboards.com/showthread.php?t=2263732
Have a great evening!!

All done!

Shunt surgery is all done and was a success. It turns out that the valve was partially (well mostly) blocked. Dr Y took out the old shunt and put in a new "fancy dancy" one and we should get to go home tomorrow.
We still have to see Dr H for the sleep apnea but things should get a lot better now so YIPPEE!!!!

Surgery is scheduled

Grrrrr...well, Boo is having exploratory shunt surgery on Wednesday. The neurosurgeon & I are pretty sure it's not the shunt but we need to be positive since that's the "easy" fix. If all is well there then the case kicks back to the new neurologist and she gets to try to figure out what's wrong and why we are having all these issues. Don't you just hate it when you can't figure out what's going on with your child!!! Oh, and the sleep study results came back but the doctor didn't give them to me. They sent them to Dr. H and will have her do it. What's up with that? We haven't seen her in almost 3 years. They must have seen something weird though. I'll ask about that while we're at St. V's too. (I'd better make a list!)
On a happier note...Gracie is away at church camp. It's her first time doing anything like this so I hope she doesn't get too homesick. I know she's really going to enjoy it and she was super excited that a spot opened up (4 days before they leave). I wasn't sure if we could send her since its several hundred dollars and daddy's still laid off. God bless my parents! They paid her fee (the church scholarshipped part of it) and sent some spending money too. They sent my nephew last year & wanted to send her but she wasn't ready then. Funny, Z is 4yrs younger but was ready first. I laugh at my sister 'cause Z is a carbon-copy of Gracie. He does spend more time away though since mom & dad are divorced so that came easier for him. Anyway, we got on the camp website and things look so nice...I'm really excited for her. I only went to camp 1 time and it wasn't church camp...it was a girl scout camp. It was nice but I didn't know anyone and definitely could have had a better time. Gracie is going with the youth group and she's become good friends with several of the girls so she's got support from others who've done this before. We talked about it on the way and both feel like there's going to be a big blessing for her there. After all that's why this spot opened up at the last minute and she was the only one who still "needed" to go. God works in unusual ways sometimes but he always gets his point across if we just pay attention.

And now we wait...

Well the testing, at least this portion, is finished. Now we get to wait for a few days or weeks (depending on the doctor) to get the results. Boo's feeling ok I think. I have noticed a few more oddities but, again, nothing that screams "shunt" or otherwise. Now I'm adding yogurt to his diet because of extremely loose stools. With all the meds he's on he should be constipated...I just don't know. You know that "mom sense" kicks in and you know something is wrong but can't figure out what it is...well that's me right now. I've done the Medical Assistant job and gone thru all the symptoms...nothing relates. I don't feel too bad though 'cause the Doc's don't know either. Hopefully one of the 2 tests we did Monday & Tuesday will give us answers. If not we keep testing but that could mean a stay in the hospital and I'd really like to avoid that. I'm going to sew up some "hospital friendly" clothes & pj's today and tomorrow just in case. Time to get busy...

Boo's having problems

Boo is having some neurologic issues. We're not sure what's going on because nothing is pointing to any specific problem though he's showing many signs of something. We're thinking the shunt may be his problem but not sure. He's got health problems but they aren't usually that active. Until recently (late May) it's been pretty typical stuff-no big deal.
Now he's still in a good mood most of the time but he's more fussy, not eating by mouth, having sleep changes, skin color gets just slightly "ashy" for no reason, and his muscle tone is crazy tight. We're going to have a sleep study Monday night and a CAT scan on Tuesday morning.
I figure the shunt needs to have a different pressure setting but none of his specialists are really sure so we're doing all the "rule out ..." tests and then we get to see the neurosurgeon early. We're not due to see him until November.
This time last year he had brain surgery and there is the possibility that we will again if the cyst in his brain has grown and is the problem. I know in my heart that he's going to continue to be fine so I'm not too worried but I do want answers so we can do what's needed to keep him happy and healthy. I'll let you know more when we find out something.