New job, no summer school

Well I finally got on at our local hospital. OK, I work PRN for the Medical Assistant float pool thru the main family practice office but who cares. It's crazy hard to get any of those positions and now I have my foot in the door. I was told it can easily turn into a full time position with one of the local practices that use the floats. That's actually how there were 2 openings, those 2 floats were hired on full time at some of the offices. I like the sound of that but the flexibility of floating sounds wonderful to me.
Unfortunately there are no benefits (PTO, insurance, etc) since I'm considered PRN but I can also decided when I work with no repercussions for saying "no, I don't want to work that day". With my life & kids....that's a HUGE bonus! Plus it allows me to get back into the workforce but still be there for the kids. Win-win I say. :)
I have decided not to take any classes this summer. I really like being a Medical Assistant, which I already have an associates degree for. The whole college scene is just not where I want to be. I will still have to go back in January for 1 last class for my Spanish certification but I'm still debating whether or not to continue with the Massage certificate. All this time in college (3 quarters) and I've only taken 3 classes that count for it, all the others were Spanish. I just don't want to spend another $16,000 & 12 months for a degree I will barely if ever use. I can't justify it.
Actually though I'm not in summer school, there is a rather big possibility that my DD will be. For Language Arts of all things. That is usually one of her best classes. *sigh* Well she's just going to have to learn to get the things done when they're supposed to be even if it isn't when she wants to do them. Welcome to growing up sweetie!

My life needs to change...

We all are, shall we say, strongly encouraged to make changes in our lives at times. Sometimes they are because we want something better sometimes God says "You need change" and narrows our options so we must make them. He always allows us to decide but there are times when he narrows the options so we will do something. This is one of those times for me.
I've known for a while that I cannot survive, much less thrive, as I am living now. I'm not happy with much of anything right now. Discontent is never a happy place to be; but at times it's what we need to see that we must make a change. I have decided to go back to work. My husband has been laid off for over 2 years now and has no desire to do anything but what he used to do for work. Not necessarily a bad thing but there are no jobs in that field right now. He has decided that he's just going to be here. There is much more to this of course, but the basic idea is that he's doing dishes and not much else. I feel that you should support your husband in times of hardship but I also feel that turning down a job in his field (the only one offered in 2 yrs) because you want $27/hr and it's only $15 is wrong. His pride is again more important than the family needs are. Unfortunately I've seen that a lot over the years. I am continuing to pray for guidance for us and our family (lots of other issues here too).
I feel that going back to work and putting college on the back burner is what I need to do right now. I applied for a job listed with our local hospital last Sunday afternoon. I got an interview call on Monday. The interesting part is that the call wasn't for the job I sent a resume for. It's for what I have a degree in and honestly enjoy doing. I believe that's God at work. This job wasn't, and still isn't, listed. It has the flexibility I need with a special needs child at home. I've wanted a job like this since Boo was about 3 and I started thinking about returning to work. I can use my Spanish in this position if needed too so the schooling I've done so far is not a waste. I think education is never a waste but when it comes with the price tag I'm going to be paying the knowledge should be used as often as possible. I believe God opened this door for me. I'm believing that he's got a plan and purpose for me in this position. I've done the interview and am waiting to hear from them. I am believing that this is my position. Of course there are times when the negative thoughts slip in but I push them back with the thought that I didn't know this position existed, it found me. I should know by mid-week if all goes well. Pray for me please. I really need this job. We can't exist on what we bring in right now. We're falling behind and there are things that need taken care of that have been put off for many months.
Finances seem to be the biggest problem in many troubled marriages. Ours is no different. This won't fix everything~I know that. I just hope it will ease some of the burden so we can focus on the other issues we need to address.
Happy thoughts. Today is Monday. The start of a new week full of promise and potential. :)

Computer games for the challenged...

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

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

Too much to do, too little time yet again

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

Mitochondrial Diseses

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

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

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

Guess what Boo did!?!

That little monkey lost his first tooth today! 2 months before his 6th birthday.
It's in the center front of the lower jaw on the left. I have looked everywhere for it and can't find it.
I noticed this morning that it looked a bit more spaced than before but it was there during Sesame Street so he lost it after lunch. We figure he must have swallowed it 'cause I've looked everywhere and no tooth. I checked the bed, feeder seat, playmat, floor around the mat, and everywhere in between. The tooth fairy is just going to have to take an "I owe u" for the piggy bank money. LOL!

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. :)

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.

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 4

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

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

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




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

Day 3 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...

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

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

Well, here goes….

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



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

We're back!

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


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


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


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

3 weeks!!!

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

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

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

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

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!

Make-A-Wish came to our house!

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

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.

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.