Thursday, December 3, 2009

Friday, Day 5 Sea World

Originally I planned to do another day at the Magic Kingdom today but since tonight was the Pirates and Princesses party at the Village I wanted to do a shorter park so we weren’t too tired to enjoy both.
Our visit to Sea World today was really so the kids could feed the different animals and to sight see. While we like the shows we just aren’t that into them and I’d rather take the kids to watch the animals in a more realistic environment. I know it’s not nature but they can enjoy them more this way. Besides since Nikolas is visually impaired and Mikayla has aspergers the crowds and confinement are not a great idea for us.
The Mikayla and my mom fed the stingrays while I tried to figure out how to get Nikolas close enough to see them. Well, it just didn’t happen so I took some video and we moved on to the dolphins. We didn’t get any video of the kids feeding and petting one (camera issues) but the Sea World camera got a few really nice shots so we have memories I couldn’t see since I was holding Nikolas.


It was a really good experience for both kids. After that we went to feed the Sea Lions. Mikayla tried her hand at feeding them but trying to keep the birds away and get the fish to the sea lions was crazy! They have a sign posted “do not feed the birds” yeah right. Good luck, those little buggers don’t give you much choice. I think they got more than half of her fish.

We decided that we were going to wander the park next and saw the manatees and some really nice garden areas.


That was really all they wanted to do so we decided to gather up any pictures the park took and head out.

Since it was still early afternoon I decided to take Mikayla back to the Titanic Museum. We went there in 2005 at it’s old location and she really liked it so I thought we’d see how it was in the new location. Mikayla and I went in by ourselves while mom and dad took Nikolas for a walk. Most of the tour was very similar to last time but they are able to display things better and you can really get in and see the artifacts. They did change some of the things at the end of the tour because they show things from the more current dives and the gift shop doesn’t have the books and maps we bought but it was still very interesting. This is something she wanted to do but then changed her mind because she thought it was too expensive. Momma decided she deserved it and made sure the money was there.

We were back at the village before 5:30 so there was a few minutes to rest before we went to dinner and got ready for the party.

The Pirates and Princesses Party was so much fun! Mikayla met up with Nidra so they went wandering to see what the Princesses tables had while I took Nikolas to get his face painted. I decided he would only sit still for a moustache and it came out so cute! “Captain Nikolas” was here! (He really likes Captain Jack from the Pirates of the Carribean series.)

All three girls got made up like princesses and Deyki wore a pirate costume. They all looked so good. Next, Shamu and Dolly came out dressed in pirate and princess clothes. I got few minutes of really nice video of them interacting with all the kids. Mayor Clayton and Mrs. Merry were also dressed for the party and came in the cutest cars! The girls went to check out the cars and I got a good picture of them too. There were dances and the kids were presented as “Pirate…” or “Princess…”. Nikolas loved this part because they got all the kids on stage and they were the center of attention.


All too soon it was over and we headed back to our villa.

Wednesday, November 18, 2009

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. :)

Tuesday, November 17, 2009

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.

Day 3 It's All About The Magic Kingdom!

Ahhhh, the Magic Kingdom….my favorite place to relax and enjoy being a Disney nut. No one looks funny at the “grown-up” who is wearing the Mickey Mouse shirt, ears, etc. You can really be a kid there and it’s OK.
The kids and I woke all up in a good mood and ready to go. We got the grandparents and went to breakfast at GKTW. (We ate breakfast and dinner there every day to save and because it’s really good food.) I just knew this would be a very relaxing day for me and my family. OK, so dad is over all the Disney World trips (maybe we took 1 too many when I was a kid?) but he’s being a good sport since my kids are new to it all. We ate breakfast, packed up and were at the Magic Kingdom getting parked and to the monorail by 10:30. I decided against being there for rope drop at any park since DD is not a morning person and my parents really aren’t into all the parks anymore. Let’s keep it fun and relaxing. We also decided to use the monorail since wheelchairs & strollers on the ferry are just not a fun way to start the day.
We get there, go thru security and head for Tomorrow Land before we go to ToonTown. Of course I have to stop for some photopass pics in front of the castle.

It was a beautiful day, sunny and warm but not hot. Funny how 82 degrees in Florida feels so much cooler than 82 in Indiana. Today we will focus on rides that either Boo can’t ride since we have someone to watch him or ones that it takes another set of hands for him to ride and lots of character pictures. I was quite surprised at how much Nikolas enjoyed meeting all the different characters. He was really into being with each one of them and would get frustrated if we went too long without character interaction. That’s my little man…lovin’ Disney already!
Back to Tomorrow Land…we started on the TTA since Space Mountain was still being refurbished (that was a complete bummer since it’s my FAV!). After that we went over to the Carosel of Progress and Buzz Lightyear. Nikolas enjoyed all of them. He really likes about anything with movement which means he should like most of the park.
After that we decide to head to Pinocchio Haus for lunch. Let’s just say that wasn’t as smooth as I’d hoped and leave it. When lunch was finished and tempers had cooled we went over to Small World and rode. This is one of my mom’s favorites. I think it’s really cute but there was too much going on for Nikolas. He just sat quietly and listened to the music without even trying to look around. With his visual issues he just has a difficult time processing lots of things at once. He did seem to enjoy all the music though. Next we rode Peter Pan. He hadn’t seen that DVD yet but he really seemed to enjoy that ride. I think the “flying” over the town had a lot to do with it since the motions are intensified a bit because the underside of the ships are free.

Up next...the rest of day 3...

Sunday, November 15, 2009

Day 2 “So Many Parks”

Ok, so I figured if I wanted to have 2 full days in the Magic Kingdom (our favorite of the parks) then I’d split one day between Animal Kingdom and Epcot. No biggie. Then I decided to do ADR’s for Boo, after all it is his Wish trip right? Well the only one I really wanted for him was with JoJo and Goliath. Ummm, that means we’ve got to go to Hollywood Studios. It was the only park we weren’t going to do. There just wasn’t anything he was interested in except them. The plan is breakfast at GKTW, then hit Animal Kingdom (it’s a half-day park pretty much) after that we’d drive to Hollywood Studios for lunch (1pm ressies) then we’d be to Epcot by 2:30ish for an afternoon there. I planned this for the first full park day since we’d all be in good moods and full of energy. At least that part was right.
We started out a bit later than I wanted to but nothing too bad. It was 9am when we got to breakfast-I had hoped for 8:30, oh well. We then packed up for Animal Kingdom and headed out. We knew there were only 3-4 “must do” things so we hit the safari first and had a great ride. The animals were all out and moving around. You could even see the lions well. We decided against a few things we had been thinking about because they were walk-thru’s and there were a lot of people in them. Our new stroller is comfy but much bigger than a traditional one, plus our Zoo is amazing and most of the animals are there too. Nikolas couldn’t have cared less…he was “people watching” and he could do that just about anywhere! Mom and Dad took him to wander while Mikayla and I rode Dinosaur. Mikayla and I decided against Expedition Everest since we like smaller coasters but the big ones…not so much. Well after a few pictures and some wandering we were finished there, right on time.
Now we’ll just lunch at Hollywood and Vine….quick in & out kinda thing right, ummm, not exactly. We got caught up in Character shots. It was partly my fault, I’ll admit it. I’m a Sorcerer Mickey nut. He’s my absolute favorite! So I get the bright idea to do “just a few” shots….well to do that you have to go to Animation Courtyard and there are characters all over the place. We got pictures with Chip & Dale, more with JoJo & Goliath, June & Quincy, the UP characters and Sorcerer Mickey.
After lots of character shots we loaded up again and went to Epcot. There are only a few rides in this park we wanted to ride and we never go into the different worlds so it’s a pretty quick park for us too. We rode Spaceship Earth, Soarin’, Journey into the Imagination with Figment, and Nikolas did Nemo with Grandpa & Grandma. Next time we go I’ve want to do that one too. (They did it while Mikayla & I did Soarin’.)
It was a super busy day but we did all the things we really wanted to and most of the ones we kinda wanted to. Besides doing this day allowed the remaining Disney passes to be completely devoted to the Magic Kingdom. We stayed until 6:30pm and then went home (you’ll call it home VERY quickly). We ate at the Gingerbread House and went home to relax.

Saturday, November 14, 2009

Day 1 continued...

The GKTW Village is really pretty simple to find from the airport so we just followed the directions on the back of the welcome sign and had no trouble. We got to the Village and checked in around 11:30am so our villa wasn’t quite ready yet. They gave us our meal card/door key and told us to go to Katie’s Kitchen for some lunch. Boston Market stocks there and the lunch is sandwiches or salads, sides and a drink. It’s all very good!
After wandering around and having some ice cream we checked back and got our villa. We were in 266 which is in the back by Matthew’s Boundless Playground.
Our villa was mostly tile inside and was beautiful!

The inside of our villa was ivory/light colored tile and the accessible bath was amazing. (I wish we had the room to duplicate it in our home.)
They had a Monday afternoon orientation at 3pm so I unpacked a bit of our things and my dad & I went to that one. We got our tickets and more information than you can process there. They give you a purple “manual”-keep it close. It has all the information you need and more in it. The staff and volunteers are always available so ask them lots of questions too. They are so sweet and helpful…you will be amazed…I know we were!
We had supper at the Gingerbread House. Everything there is soooo good. It had a home-cooked taste, not that “restaurant food” taste. They have lots of volunteers to wait on you hand and foot and they expect to do so. That was one thing that was hard for me to get used to since I’m usually the one who does most things. It was a nice break. One thing that made a big impression on my daughter was that there were a lot of kids who volunteer there. Younger and older teens... now she wants to see if our youth group at church can volunteer.
We decided to just hang out at the villa the first night so Mikayla & I went to borrow a couple of DVD’s from the House of Hearts lending library. Guess who was there? Momto4+more & the kids! (Hi Cathy!) I recognized them from the Big Give outfits the kids had on. We said, “Hi” and promised to meet the next evening at dinner to get to know each other a bit. Back to the villa to rest up for tomorrow. It’s our “jam-packed 3 park” day. (Yes, I planned a 3 park day…I’ll explain later but it does make sense.)

Friday, November 13, 2009

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. (’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!!!!

Wednesday, November 11, 2009

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!

Wednesday, October 21, 2009

It's almost time but...

Boo's Wish Trip to Disney is in about 1 1/2 weeks! Excitement is running crazy here but during our visit to my sister's house on Sunday (birthday stuff for her & her son) all the kids managed to get the FLU! Yep, all the kids have the flu and we've been put on Tamiflu. I must sing a few praises for that stuff. None of us (I'm on it too) have gotten seriously ill. We definitely feel crummy-body aches, cough, runny noses, some fevers-but catching it this early is good. I only felt horrible for about 36 hours, DS seems to be really tired and has a mild cough but seems to be OK, DD still feels bad (but probably not quite as bad as she wants everyone to think). Her cough is awful but she's pretty active and chipper until you remind her to "go back to bed and rest-you have the flu" then she's "suddenly" oh so ill again. :)
The volunteers are bringing our travel documents on Sunday. Oh, and our lockdowns for the van and Boo's special needs stroller got approved! YEA!!! We were scheduled to have the lockdowns installed on Friday but I think I'm going to move it to when we get back since I want all of us to rest as much as possible this week and next week is just not possible. I have no idea when the stroller will be here so we're planning to take the wheelchair instead. My new Mei Tai carrier pattern is MIA so I either have to draft my own or not use one. (I plan to draft my own if I can't find it in the next few days.) My sister-in-law just found out she's expecting (very happily surprised!) so I can make her one later when it shows up.
I think that covers all the important stuff for now. I'll post pictures of our trip when we get back. I've decided to get the PhotoPass CD so we'll have lots of pics and I get to be in them too. :)
Have a great week everyone!

Monday, October 12, 2009

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 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!!

Friday, September 4, 2009

New return flight..

Well I opted for the earliest leaving flight and the later return flight. Guess what...the airline moved the flight time. It was for 6:43 pm (who comes up with these times?) now it's for 8:30ish pm. 2 extra hours to explore GKTW. YEA!! Now I need to figure out what needs packed, get the suitcases from the in-laws (they HAVE to be aired out...chain smokers!) and figure out what clothes I need to replace for the kids. Gracie has outgrown the pants we bought at the beginnng of August already. I'm glad we decided to go to Plato's Closet instead of paying full price. We're going to go thru the clothes she has and go back in the next week or 2. Well chores are still waiting...why can't they do themselves? Have a great weekend!

Thursday, August 27, 2009

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'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...
Have a great evening!!

Monday, August 24, 2009

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, 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!

Thursday, August 20, 2009

Chicken Spots

We have a new song around our house. It goes something like this....."You can't go to school with chick-en spots, chick-en spots, chick-en spots. You can't go to school with chicken spots all over you!" Yep, the stupid school system required me to get the varicella (chicken pox) vaccine before he could go to kindergarden and guess what...he actually got the chicken pox. I wanted to wait until the summer between 5th and 6th grade if he didn't get them before then but not per the school. So Mr. Boo had to stay home all week to wait for them to go away.
He went back today. He loves his class and his favorite times are....LUNCH & RECESS! Just like mommy! Actually they are the favorites because there are tons of kids around and his class is pretty small since he's in the lifeskill class all day except for specials, lunch and recess. He seems to do alright for all day but we're still in the trial phase of "all day kindergarden". It's kinda nice to have a few hours to myself. I'm even going to join Curves so I can get out and get healthy.
Have a great weekend!

Sunday, August 2, 2009

Feeling better...

Our (Boo's) surgery was a success! Boo's feeling better. He's still not 100% but definitely better. He's actually going to therapy tomorrow-PT, OT and speech. We're working on getting him a new stander and a therapy ball. His PT and I decided to give him the winter off from them and start back after spring break. Hopefully since he's had this shunt replaced and will be seeing the ENT, he will start making progress again.
School starts on the 12th and I will be sending Boo for a few hours before we have to go to the doctor. We enrolled him in all day kindergarten but that's really a trial. If he gets too tired then he'll switch to 1/2 day. Either way he'll stay in Angie's class for the next 6 years and that makes me much more at ease. She's a wonderful teacher and perfect for the lifeskills kids (and she's fine with cloth diapers-used 'em on her kids!).
Gracie's nerves are getting to her...a new school year will do that. She got a small new wardrobe to get started and is excited. Oh, and her grade school counselor has moved to the middle school so now she's got someone she trusts (who knows about her family history) that she can talk to if she's having issues during the school day. She also has a new schedule...they put her in Biology last week. Hmmmmm....Mr. D "didn't think she was smart enough" then Ms. M & the counselors changed the schedule and decided "yes she is". Ummm an IQ of 137+ and a college reading & comprehension level should be ok for biology & algebra. :P
Time to get back to sewing Boo's school wardrobe...nothing from the stores fits well any more.

Wednesday, July 22, 2009

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!!!!

Tuesday, July 21, 2009

Sleep Study Results

OK, Dr. H's nurse called and gave me the results. He's got mild obstructive sleep apnea. (Not really a surprise) We've got an appointment on the 12th so we can decide what to do next and give him time to recover from tomorrow's procedure. I'm packing for 2 days even though they say it's a 23hr stay. He rarely "plays by the rules" so hopefully we go home on Thursday but I won't be surprised if it's Friday. Dad's having back surgery on Friday so as long as I can leave St. V's and stop at Community North we're good to go. Off to finish packing all the "must have's".

Sunday, July 19, 2009

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 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.

Wednesday, July 8, 2009

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...

Saturday, July 4, 2009

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.

Friday, June 26, 2009


That's been the general consensus between me and several of Boo's doctors right now. Something neurologic is going on but none of the symptoms point to any one (or two) things. Actually none of them fit ANYTHING. He's got strange sleep patterns, odd skin color-sometimes but never consistant with any certain position or angle, refuses to do any oral eating but always has either his foot or toes in his mouth if he can get to them. His muscles are super tight and he's contracting a lot. Tons of other minor things too but nothing that says any particular issue. This little guy never fails to keep me on my toes.
I've decided since we have to have so many tests done (sleep study, CT scan, etc) I'm closing the shop until August. I just can't spend the time I need to on anything else right now. I'm trying to keep all these doctors appointments, therapy sessions, tests, etc...there's just not enough of me left to work on things for the shop. Besides I really need to take a break and work on things for my family when I get a few minutes. It's pretty sad when I make diapers and my son only has 6 that fit. I'm just taking some time off for my family and our issues. Maybe then I can relax and have a more productive life and shop this fall.

Monday, June 1, 2009


It's official-the school is full of idiots (& I don't use that term lightly!) The school counselor called to respond to my questions about biology placement and during the course of conversation we began discussing the aspergers diagnosis. She thought it was just a "probable diagnosis not an actually doctor provided diagnosis". I reminded her again that I have sent 5 copies of this on a doctor's script as well as the doctor's dictation to provide the information they wanted and I'm getting the run a round from Blue River and the school. "She had no idea." Blah, blah, blah....Charlie Brown's teacher is talking again. These people are going to make me NUTS! Now we are going to have another 504 meeting at the beginning of the school year...waste my time again but I'll go. This time if we can't get something better than the general education intervention crud we had I will retain the attorney we talked to. No more messin' around. I'm way past done.
On the upside, Gracie did get in to choir and there was a space for her so it's official on her schedule for 8th grade. She also is in high school algebra and high school biology. We weren't going to put her in biology but she "had" to have it and was to the point of tears so the counselor called and asked what we wanted to do. I had already fought with her to get Gracie into Algebra (they wanted to put her back into pre-algebra which she passed this year). I told her to remind Gracie how much work and effort was needed. I heard her in the background saying she understood and wanted to do it so it's official. My child is crazy too and going to take 2 high school classes in 8th grade. This should be "fun". :\

School's OUT!!!

Today is the last day of school for the kids. Gracie was up at 6:15 am by herself....why can't she do that everyday? She was ready to leave 10 minutes early...she needs to "get there early enough to get a yearbook". We didn't get the order in on time in the fall so now she has to hope she gets one. Last year she missed it.
She found out that she made choir for next year but there's a catch. If the class is full then she has to try out again in the fall. You'd think they'd have a waiting list but I guess not. The director was going to ask the schedulers to see if there is room so she'll know before school gets out but they haven't said yet.
Boo has no idea it's the last day-though I did tell him. I'm sure he doesn't really understand that he's leaving Miss Sarah's class and moving into kindergarten in the fall. That means most of his preschool classmates will go into regular classrooms and he's going into lifeskills. I do know that there are many of the kids who will be in & out of the class throughout the day for different subjects so he will still see them. He will also still go with them to the "specials" classes (art, music, gym, library).
Summer is looking long already though I am looking forward to the break. Boo will have therapy on alternate Monday's @ St. V's and 6 sessions for school throughout the summer. We are continuing respite too so I have some time that I don't hear "we have a diaper emergency-come change him" or "Boo needs his medicines" or "time to feed Boo-are you going to make him wait?" OK, enough boys and girls....there is a clear schedule on the fridge so everyone knows when he needs to eat, when to get his meds, and the minimum times to check his undies for a change. I love my family but I'm not the only one who can care for this child; not to mention I shouldn't be the only one since his pappa is still laid off and sissy is more than able to change a wet bum. Now if I can just get them to understand that respite is "complete care for Boo" so they get a break too. Not that they really want anyone to come in but they don't want to do it either. Hmmmmm, I'm still not "SuperMom" even though I try.
I agreed to cut respite to 1 day a week from 10-3 for June. DH is due to return to work in July (I hope!!!) so I may go back to 2 days a week then. I plan to use 1 day to spend completely with Gracie and 1 day to sew. Cleaning can be done on the other days. :-p
My shop is nearly empty so I reminded/told everyone that if the door to my sewing room is shut and I'm in it then I'm "at work" and to LEAVE ME ALONE!
Money is tight and I can't get anything done and posted to help supplement if I can't get the time.
OK, enough whining. DH wants to go for a bike ride and I need the exercise so we're going while both kids are at school. We've got about 45 minutes before Boo gets home so I've got to get my bum out of this chair.
Have a great week!

Monday, May 25, 2009

Weekly update...

Once again there's not much to report but in our house that's a good thing!

We have 5 days left of school!! Gracie is excited, Boo doesn't really realize it and probably will miss seeing all his friends but there will be respite and therapies all summer so he's going to stay busy. Daddy is still laid off...boy I'll be glad when it picks up again. :)

Let's see...I don't think I'll break it down by day this time but here's the scoop...

Boo had a little girl (Sara) in his class bring him 2 daffodils to school,

Gracie is trying to be more cooperative and less argumentative (she's 13 in 2 weeks...not seeing that last...hehehe).

Boo turns 5 on Tuesday. Wow! I can't believe it's been 5 years already. :(
He's growing so fast and getting so big now. His blended diet is doing wonders for him though. 'Course real food has a way of doing that. He's so much more verbal and chatty. He's playing more too so I see lots of pluses in putting a few cans in a blender and putting that in his feeding tube. ;)

Gracie is planning her "Luau" birthday party but now she's not sure who she's going to invite since she's got a few more friends this year but our house is still under construction so she's kinda embarrassed about how it looks.
Gracie-I promise we will get it sided & a new roof someday (soon I hope). Unfortunately that got put on hold since we had to live on the tax check this year.

We went to a cook-out at a friends on Sunday. Lots of people I haven't seen in ages were there with their kids. Everyone got along pretty well and Gracie even stayed later to spend some time with the girls who are close in age to her. She wasn't happy to leave since some of the girls were spending the night but she got over it relatively quickly when she got home.

We had a cook-in, yep it was raining, for both kids birthday today with my parents. My sister had to work and his parents didn't feel well so they didn't feel like staying. They did stop and leave a card for Boo (only Boo-don't get me started on the "issues" with Gracie!).

There may be something else but my mind is blank right now. Have a great holiday weekend!

Tuesday, May 19, 2009

Blended diet...finally getting some real support

I got a really interesting call from Kara at St. Vincent. She's one of the nutritionists and very sweet. Apparently they had a donation of Compleat and Dr. S. told her to call us. They offered it to me for free, I just needed to come get it. We get it from insurance so we told them to offer it to another family but during the conversation we started talking about the blended diet and how I'm using it with Boo. Dr S told me to "go for it". The nutritionists and other docs (all but 1 is OK with it) had no idea how to so they just told me to go to the food site and create my recipes. That was NO HELP. I was still so confused. I knew what I wanted to do but not how to do it safely.
Well there was no way I could afford a Vitamix even with the discount and I couldn't find any recipes to get me started. I broke down and bought the Homemade Blended Diet book but it's pretty technical and only has a few recipes. I still get a lot from the book (probably only because of my education) so I refer to it a lot but the typical "lay person" won't get much for it and it's $45 bucks-save your money. The yahoo Blended Diet group is a HUGE help but I really wanted someone to walk me through getting started. A year later I re-started this and we're doing great.
Anyway back to the nutritionist...she began asking me about what we were doing and I told her & said that I was glad they were starting to support us more. She asked what I meant and I explained that when I've asked before (over the last 18+ mths) I just was told to go to the gov web site and email or fax my recipes. I really wanted someone to work with me and walk me through the first few recipes then I could just follow up as needed. She apologized for the lack of support and told me that there are several families who want to do this. We had a really nice talk and I now have nutritionist support as needed. All I need to do is let Dr S know and we'll get an appointment set up.
I'm just glad that "adequate" is no longer good enough. Commercial formula's like Nutren Jr, Pediasure, Resource and the rest are "adequate" but honestly, would you feed your "typical" child only that? Then why is it OK to feed our medically fragile kids that full time? I understand that for some people it's really the best option and I don't fault them. For me though, I don't see any reason to.
I do use Compleat sometimes and it is really convenient for when we travel. I just find that I feel like a better mom by giving Boo real food thru his tube instead of sugar water with some powdered milk and a multivitamin. Besides I have been able to stop using any medicines to make/help his bowels move and we are probably going to stop his prilosec later this summer since he's no longer having reflux issues. Stopping 3 medicines and being able to lower his seizure medicines is awesome but the biggest plus is when you take them to the pediatrician and everyone in the office asks what you're doing differently because he looks so HEALTHY. Ummm...real food will do that for you. ;) Besides it really is a lot easier than I thought and only takes a few minutes. I usually do it while I'm fixing lunch or dinner for the rest of us...ta da the next day's meals for him are done. It's actually faster than fixing ours most of the time.
Have a great evening all!

Friday, May 15, 2009

Friday Update

It's been a generally quiet week.....YEA!!!!
Sat-sewed a new diaper for Boo. Yep, only 1-my "mom skills" were in high demand EVERY time I went up to the sewing room.
Sun-Mother's Day-I got a Wii Fit (yes, I've been asking for one so I will get more motivated to exercise). Gracie made me breakfast in bed and it was a very nice day. :-)
Mon-nothin' new...Boo did meet a new OT at St. V's today and all his therapists agreed that he needs a 1:1 or no more than 1:2 classroom aide in the if we can just get the documentation then make the school comply....not going to worry about that until closer to August.
Tues-Boo went to the park with the respite nurse and had a good time; Gracie still feels crummy but isn't worse so I call that a plus
Wed-a nice quiet day
Thurs-Boo went for another walk with the respite nurse. Josh took him next door to the Fairgrounds. I didn't realize he was going to be gone so long or out in the direct sun so much. Boo got a pretty nasty sunburn on his face.
Friday-Gracie is spending the night with my mom & cooking from her NintendoDS Cooking game. She's making stuffed tomatoes and pavlova (fruit, whipped cream & meringue) for dessert. I got more things to make a new blend for Boo to try & some of his favorite baby foods to eat orally.

Maybe I'll remember to update like this most's a nice way to summerize the week.
Have a great weekend everyone!

Sunday, May 10, 2009

"Facebook Fridays"

OK on MommyBee's blog Jenni's talking about her "Facebook Friday" updates. Well I rarely get on my Facebook page so there are never updates for that so I think I'll continue to try do my updates here. Like I remember to do them anyway...but I'm gonna try.
Here's a recap of our week...
Sat/Sun-Gracie is sick (cough, runny nose, etc) the walk-in Doc took her off the Zyrtec to give her a different kind of allergy med (D-Allergy) because it *might* make her cough better. No such luck! I doubt we sleep much tonight here.
Mon-I got a new monkey pul diaper done for Boo. This one is a frankenstein pattern I've created because nothing seems to fit his super skinny booty. I used touchtape fasteners for this one. I 'm going to do a snap one later this week.
Tues-nothin' new today
Wed-Gracie is not anybetter and calling from school to tell me how sick she is. I'm going to have to call the doc tomorrow since her doc is off on Wednesdays.
Thurs-Called Dr. P. She wants Gracie in first thing tomorrow morning to be tested for flu since they didn't do that (like required right now!) last Friday when I took her in. Glad we don't have copays anymore. They forget these visits cost money sometimes. She's to start doing the inhaler 3x a day again. I did finish the snap version of Boo's monkey diapers today. It came out nice. :)
Fri-Gracie's flu test came back negative but she's to continue the inhaler and add an antibiotic. If she's not much better in a few days we also get to add prednisone.
Sat-Gracie is getting better and Boo is now getting sick too.
Sun-Happy Mother's Day to all the mom's out there!

Happy Mother's Day

I just wanted to wish all the mothers and mothers-to-be (expecting, TTC, or just waiting for the right time) a very Happy Mother's Day!
Please, relax and enjoy your day and your family. You've earned the time to take a breather and relax. Today isn't a day for housework and stress-only for relaxing with the ones you love...besides it's all going to be there on Monday. ;)

Saturday, May 9, 2009

Sick kids (again) but it's getting better...slowly

Ah well, here we go again...."Gracie" is still sick. She sounds horrible-cruddy cough and runny nose but no real fevers. I took her to the doctor last Friday (had to get thru ISTEP first 'cause the school would FREAK if she missed any time even if she was dying!) . The walk-in doc we got is really nice but decided to take her off the Zyrtec and use D-Allergy. Ummm, why? Anyway she didn't get any better and I called to leave a message for Dr. P. (her doc). Well long story short, Dr. P wanted to see her the next morning because she wasn't tested for influenza or anything else when she should have been.

She was flu tested (negative) then put on antibiotics and her inhaler 3x day for the next 10 days plus OTC cough meds as needed. She's already feeling a bit better and not nearly as cranky. (YEA!!!)

Now it seems that Boo may be getting sick too. He's started coughing and feeling warm but no real fever and boy is that child CRANKY!

My sewing time has been minimal to say the least but I did get 2 diapers done for him over the last few days. I've had to "frankenstein" them. He's just too skinny for the KCKOne large child. I've tried to narrow it and make it work but no luck. I just decided to take my youth pattern and mix in all the parts of the diapers he has to make one that fits and will grow with him for a while. I like the 2 I've finished. I did one with touchtape and the other with snaps. I do think I'll narrow the wings on them and allow enough room for 1 snap instead of 2. I also think I"ll have to do the front loop differently for the ones for school since I don't like snap down rises and they (school staff) need touchtape on the ones for school.

On a better note, we finished the summer IEP for Boo and it's pretty good. His kindergarten teacher loves the idea of cloth diapers and used them on her kids so she's great with more frequent changes. She's also trying to get another aide in the room so there are 3 adults since there will be a few kids in there that are very physically dependant. I still worry that he won't get the attention he needs but Angie is a great teacher and will make sure I'm keep current on everything. I want him to have an aide that is no more than 1:3 but so far that's not going to happen. I know because of his health issues and his needs I can push it and press for a 1:1 aide (least restrictive environment-Article 7 and medical necessity) but I'm going to wait and see how many kids there are and how many aides we end up with before I do that. I think the extra funds a nurse would cost could be better spent educating these kids. Time to "hurry up and wait".

Oh and Boo got a new haircut-just like the big kids. I'm still not sure I like it but everyone agrees he looks so much more grown up!

Wednesday, April 29, 2009

So tired...

I'm so tired now. Tired of fighting with the middle school about my daughter, worn out from trying to please my custom order clients, tired of my messy house, tired of going thru all the stuff (JUNK) we really don't need that's taking up so much space. I sooooo need a vacation!!
The middle school is driving me NUTS! Gracie is failing 3 classes (this from a girl with 98-99th percentile ISTEPs!)and all they can say is, "she needs to be more responsible....she needs to do blah blah blah....! Actually any more all I hear is "blah, blah, blah" when they call kinda reminds me of the teacher on the Peanuts cartoons we used to watch as kids. ;)
I'm sorting and discarding anything that I possibly can. I mean clothes, boxes of anything I don't want to look at, old movies that Nikolas won't watch 'cause they're too girly, all that extra bathroom junk that somehow accumulates. Why do we need to try 800 different hair products anyway? I mean Gracie & I both usually wear a ponytail or braid, possibly a hair clip. Who needs that much stuff?Pappa and Boo both have really short hair so they don't either.
I'm so over all the accumulated crud. Part of me is going "Please just make it all go away!!" The other part says I should at least look at it to be sure we really don't use it before I pitch it. I hate to re-buy things I just tossed out.
On a better note...I'm setting up a set of recycling bins for some of the things we use a lot of like paper and plastic. It's not as green as I'd like but we're in a super small house and they don't pick up our recycling so I have to store and transport it to the city dump where the recycling center is.
I think I'm going to stop taking custom orders for awhile. I'm getting so burned out. I haven't even been doing that many but I started this as a hobby and to help out others. I find that I don't even want to sew much anymore. Plus I can't afford to have any real income from this or we could lose Boo's medicaid and no other insurance will touch him because of all his medical issues.
I think I need to get a few nights of sleep that are more than 5 hours and maybe I'll freshen up some.
Sorry, I didn't mean to rant and vent this much but sometimes that happens when your life is crazy like mine.
Have a good night!

Thursday, April 9, 2009

Autism Awareness month

April is Autism Awareness month! Please take a few minutes out of your day to read a bit about this spectrum of disorders. There is so much more to them than "Rain Man". I know that's what most people picture when they hear "Autism". There are many different forms of several different disorders on this spectrum.

I once had it explained like this...
Autism is like a double rainbow. The bright inner rainbow is your basic Autism disorder. One end is the mildly affected person the top/middle is the moderately affected and the other end is the severely affected. The second, less visible, rainbow is for the other Austim disorders like Asperger's Syndrome and Pervasive Developmental Disorder (PDD). This rainbow is marked the same way...mild, moderate and severe.

My DD is somewhere in the mild to moderate category. To look at her you'd never know there were any issues, to speak with her you think...Albert Einstein, then as you get to know her you begin to notice the differences. Some people say, "brat" or "needs better discipline". Her teachers are fond of "she should know that". My response to that is "she would if you'd take the time to TEACH HER-which, by the way, is what you are being paid to do". I've gotten so discouraged that my tact is gone after 7 years. I try to remember that each year is a new set of teachers and I let them form their opinions before I make known what the school & co-op don't. They have a special needs child in their class. I frequently hear things like "she's too smart to have anything like that". Ummm, maybe they need to read up on this stuff again.
I'm getting so tired and frustrated with this fight.

At least they don't fight me with her brother. They're quick to give him whatever I ask for. I guess the fact that he's so obviously physically and mentally delayed that they can't deny it is in his favor. That would make our school system look really bad. It's such a shame that they deny children like my daughter and another of her classmates any help and services even with diagnoses from expert physicians. It does such a disservice to them and our area.

I'm asking that you, please, read up on the different Autism Spectrum disorders. Maybe you will look a little differently at that child who's having a melt down in Kroger or a tantrum in WalMart next time. We aren't bad parents, we do provide discipline for our children but sometimes we have do deviate from our regular schedules and these little ones just can't handle that. Bear with us and please don't may not have all the information to make the right judgement.

Friday, April 3, 2009

A new diaper for our hospital times

One of the fabric coops I belong to is running a group buy on a pattern called "Daddy Flats". What a great design! They are perfect for the hospital. Flats that fold easily and snap so the nurses don't have to use pins. Yep, I've talked with the designer and I'm getting a copy for me. They're made with 2 layers of fabric and take no time at all and minimal sewing skills. You could even pin these if you don't have a snap press for the snaps. Curious? Go to and look at her awesome design. I just wish I'd have thought of this. ;)

Saturday, March 21, 2009

I found another great blog by another wonderful mom of a special needs child. It's called Dream Mom (also a Blogger blog). She's a really sweet lady and took the time to respond to me when I emailed about the Compleat. She's a single mom with her hands full but she's going about it happily (as often as we can) and quite an inspiration if you need a pick me up. There is a very good post about what our faces show when we look at our kids. I never thought about it much but when I'm worn out I wonder what Nikolas sees when he looks at me. I hope he understands that I wouldn't trade him for anything and he's not a burden to me at all. I hope Mikayla knows that too. I try tell them both these things but I'm not sure if they really "know" it. I'm making the mental note to remind them again (and again). The post is titled "If your child's face were a mirror what would you see?" Quite an intereting thought, even for those with typical kiddos.

Blended diet again

Well we've been working into more blended foods for the last few days and Boo is finally starting to perk up. I also found out about a blended formula. It's called Compleat and is from Nestle now. It's one of those formulas that either works well for you or not at all. I think we're gonna try it though. It's made from real food rather than sugar water with powdered milk and a multivitamin. It's got to be better that what we're doing now. I really just want it for when I can't use the blended stuff (when we're out or I'm sick). I understand that we'll probably need a different kind of pump because it's pretty thick. I don't use the pump much and more but we need if for when Daddy or my parent need to do the feeds. It makes it much easier for them to be sure to get the right amounts in him. I'm still looking into our options but I really want the "sugar water" stuff out of our lives. I mean really, would you feed your typical child nothing but sugar water and a multi-vitamin? I know I wouldn't so why should a medically fragile child, who needs the best nutrition to be healthy, have to live on that stuff? Nikolas is also working on oral feeds as well so this just makes sense. I can do his oral stuff then blend it down more to go through the tube. Viola-healthy & happy little man!
Have a great weekend everyone!

Saturday, March 14, 2009

Boo's new pj's

OK, Nikolas is growing like a weed and I decided I need to get him some lighter weight pj's done before the fabric I've got isn't enough and I can't get anymore. I traced and resized one of the one piece polar fleece outfits he got for Christmas. I've never done ones like this before. I'll definitely make a few changes for the next ones but all in all I'm pretty proud of how this came out. I even made matching g-tube pads. :)
I need to take pictures of Mikayla's Tink gown I made her for Christmas. It came out really nice too. I LOVE flannel! It's warm in the winter and cozy in the summer (Jim likes the arctic blast from the air conditioner so it's a bit chilly at night).
Hmmm, I thing we really need to fix that door to the sewing room too. It's lookin' really sad.
Night all-it's late and Boo needs these pj's for bed.
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Wednesday, March 11, 2009

A change maybe?

Well, life stinks right now, why? Because I've got a long time ago (over 15mths ago) customer who wants stuff removed from my Etsy shop. Problem is since Etsy is an auction site only the Admins can do that. They (so far) don't think is needs to be done.
So far I've gone through all the anger, irritation, fear, etc and my solution is that I'll open another shop and close this one. I'll lose all the 100% positive feedback I've accrued but I can copy & paste it in another section for those who want to see it.
I suppose this is as good a time as any since I'm looking at making this a part-time job instead of just a hobby. A new name is also a good idea. I still like something to do with "special needs" since that is my focus. I'd also like something that starts closer to the beginning of the alphabet since "S" put me at the end of many searches. Oh and it has to work for the blog too. Good grief-this is crazy. On the positive side-a fresh start is not a bad thing. Well, it's late and I'm going to bed. Goodnight all.

Monday, February 23, 2009

SOPO for Nikolas!

I finally got a few minutes to sew for my son! YEA!!! I made him one of the new KCK One SOPO's in a size 3. SOPO stands for "snap on pull off". It's basically like a pull up in cloth. I used a donated green pul and a cute dinosaur flannel fabric that I had. I did put the welt pocket in the back. I think this one ran a bit big but we all know how fast kids grow and my little guy is in a growth spurt as we speak. I really like the way these go together and the fit is pretty nice too. I added the hidden center soaker but only did 1 strip of ZORB and 2 layers of hemp fleece. That's only minimal coverage and not enough for a child like him which is one of the reason I put the pocket in the back. I want something that looks more like real undies for school and I can add an insert to get the coverage we need. Plus when he outgrows these I can donate them and another mama will get to decide how much she wants in case her little one is potty training. Yes, I still call it potty TRAINING-"potty learning" is silly if you ask me. I'm only for the "PC" stuff if it's reasonable and makes sense. Too many people are getting carried away with the silly stuff. Besides if you read the Bible it tells us to train up our's a form of teaching. Getting off the soapbox now... ;D

Here are a few pictures of the final product. The first picture is the front, then the back (I added a KCK label but didn't need too) and the third is the inside.
I think it came out pretty nice and I'm planning to do several more when I finish the custom orders I've got waiting on me.

Nikolas & Mikayla are both sick so between them and the customs I'm just waiting for a few free minutes for "me" time. I'm glad sewing is relaxing for me...uh oh, breathing treatment time again....I'll post more both blogs later. Bye!

Saturday, February 14, 2009

Valentine's Day 2009

Well, it's Saturday 2/14/09 and I'm starting a personal/family blog so I can separate my work related things from the personal ones so here goes.
I always make some kind of special dinner for my hubby on Valentine's Day. First, because it's my gift to him and secondly, because eating out in nearly impossible between the cost, the time, and getting a sitter for the kids. Besides he prefers it since he's rather "anti-social" and really (honestly) likes my cooking. This year I cheated a bit.
For our anniversary last year we went to The Melting Pot compliments of my sister (she gave us a gift card for Christmas & we held on to it for a few months). That place is awesome!! I don't eat seafood so he got all the lobster-and had to give me some more of the filet mignon in return.
This year Gracie and I decided we should do that for our special family dinner today. (Jim & I include the kids in most of the special Valentine's things.) Well I spent a fortune-I mean we could have gone to the Melting Pot for what I spent-but I got filet mignon, lobster tail, chicken, pork, broccoli, portebella mushroom, good wine & veggie stock, the works! I precut everything last night and then "let" him cook at the table. Actually, he's a really good cook but just doesn't do it often. Plus, it was so nice to not have to cook for a change. We all ate way too much but I'm not watching that today. Boo wasn't very happy since he couldn't have what was on my plate but I put him on his mat in the living room and gave him a toy. That was good enough for him. It's so nice how "easy to please" he is.
The rest of the day wasn't as relaxing-Mom ended up in the ER at Community North because of her pneumonia, Crys had to work and her "other person" decided to try to earn some brownie-points by doing things he promised to do 6-12 months ago. Gracie is having a rough time all around and needs to go back on her medication but doesn't want to so we're fussing back and forth about that and to top it all off her starting puberty is driving me NUTS! How do you deal with an Aspie who's starting puberty?!?
All in all though it was a pretty good day. After all we're healthy, at home, and still together.