My Quirky Family

Crazy times but it's worth it

2011-08-21T14:09:00.000-04:00

I know it's crazy but I'm going to finish the Massage Therapy certification. I love being a Medical Assistant and the prn schedule is working out well but with the hiring freeze at the hospital it's almost impossible to get a set office that I like being in. I don't hate any of the offices but I do prefer certain ones over others. I think staying prn while I finish school is definitely my best option right now. School is back in session for the kids and I resume classes in Sept. Wish me luck! Here's goes my sanity, lol!

New job, no summer school

2011-05-21T21:18:00.000-04:00

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...

2011-05-16T08:00:00.001-04:00

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. :)

Goin' for another 90 days!

2011-05-15T21:07:00.000-04:00

I just got the OK to be "boot free" another 90 days! We'll do another x-ray & follow-up appointment in July then again in Dec or Jan. Officially it's still a taler dome fracture (still broken) but healing nicely and it's one of those breaks that takes forever to heal. Still it IS healing and I am boot free just in time for summer! YAY!!!

Bye Bye Boot!

2011-04-23T10:16:00.000-04:00

I'm so excited to say that over the next 7-10 days I will be transitioning OUT OF THE AIRCAST BOOT!!!! I don't know how people stand those things for very long. Granted they are much more comfortable than a traditional plaster cast but they are so bulky and heavy. Anyway my talus bone is healing nicely so Dr. H. is getting a bit more aggressive and wants me out of it as much as I can to build strength and flexibility. I go back in 3 weeks for another evaluation and to be sure it's still doing well. I am allowed to walk and wear both shoes but no heels, running, jumping or strenuous activity. Truthfully, it's so weak I wouldn't dream of trying those things anyway. I do have to figure out what shoes I'm going to wear for Easter Sunday now...I'm not sure where my flat dress shoes are. I guess I may end up in tennis shoes but I'm wearing pants anyway this year so it will be fine. I'm so glad this is almost done!
Have an amazing Easter weekend everyone!

It's healing!

2011-04-14T20:06:00.000-04:00

After new x-rays this morning I found out that this foot is healing! I can take off the boot 3 times a day for range of motion. Here's the best part....I don't have to leave it on at night to sleep!!!! *clapping & doing a little happy dance*

I still need to have a CAT scan done next week to verify that the hollow spot is filling in but then I will begin the slow process of walking without the boot. I have to build the time with it off but that's OK! They want me to be out of it by summer. Personally I'm shooting for mid-May but I'm just glad it's coming off and the foot is healing. :)

Just thought I'd let you all know. :D

Wednesday night Spanish class

2011-04-08T23:23:00.000-04:00

WOW!!! I knew this would be my hardest class but OH MY!!! There is absolutely NO English spoken in class. Ummm I'm already behind since I didn't get to take the 2nd grammar class so I don't know all the basics yet. Thankfully Christine Stone is a very patient & wonderful instructor. She wants us to use our dictionary to work out our questions in Spanish and she'll correct us as needed. This way we really learn the language and how to speak it. We also focus on proper pronunciation so I will be able to understand (somewhat anyway) and speak to my patients/clients who are Hispanic.
When class started last night I got so anxious that I didn't know if I wanted to pass out or throw up, lol. I can't imagine how much I'm going to have to catch up on if I end up having surgery on this stupid foot injury. We only meet 1 night a week for 4 hours and our grade is based on participation. You MUST try to speak to get any points and they are 35% of your grade. It will all be worth it in the end though so I will pass both the Tuesday night & Wednesday night classes with decent grades. (Yes I have another 4hr Spanish class too.) I will be taking the "missing" grammar class over the summer and then I will have a certificate in Occupational Medical Spanish. I don't know if I'll go back into Medical Assisting but it will be nice to have it anyway. Besides, you never know, I may get Spanish speaking massage clientele. :)

Sewing is a challenge....

2011-04-02T16:48:00.000-04:00

Sewing is a challenge but I can do some. I'm even figuring out how to get the serging nice on things I'm working on. I can't sit and sew for several hours but I can do it for about an hour at a time. Sewing with your left foot/non-dominant foot is definitely not easy but it's sure nice to be able to work a bit.

I forgot to take picture of the things I made for Keia but they came out pretty nice and I am pretty happy to hear that the idea of cloth isn't foreign to them. Her fiance was even looking at diaper services to try after the baby comes. I say...go for it! Even doing it part-time with a service is cheaper and healthier than full time in sposies.

The new quarter starts on Monday. (We're all on spring break this week.) I'm taking 3 classes this term, all at night. I'm going to miss my day class friends but only driving to Indy 3 evenings a week will be so nice. It will also give me a better chance to study, spend time with Nikolas and sew as I feel up to it. I know there is more homework in night classes but I think it will all balance out over the quarter. Besides this will be easier if I do end up having surgery on this stupid foot injury. (It's more painful than it should be & it's lookin' like I'm going to.)

Time to take a well deserved nap. :) Have a great weekend everyone!

This just might work...

2011-03-20T10:36:00.001-04:00

Yesterday I decided to use the computerized machine to sew for a friend. It's super slow going but I can do it since I don't need to use my foot. I can barely reach the ironing board so I need to get more creative to use the iron but at least I can start to do a bit of sewing for us & my shop.

I've got finals this week. Review in Kinesiology tomorrow morning, Spanish in the afternoon. The Spanish final is on Tuesday and Kines is on Thurs. They allow 3 hours for each. After that.....SPRING BREAK!!!! YAY!!! I really need a break too, lol! I think I need to rearrange 1 of my classes for next quarter though. If they do end up doing surgery I don't know if I can keep up with all 3 classes. Still debating that though. These classes aren't too bad and I should be able to prearrange any work so there isn't much to make up. I don't know. I'll think about it some more before I decide anything.

Breakfast is ready. My wonderful hubby is doing everything now so I can stay off this foot. He has not had a meltdown yet so I guess that's a good sign, lol. Taking full time care of Boo & me & the house & most of what Gracie needs is a 2 person job but he's doing it with no complaints. :)

Happy Sunday everyone! Enjoy what's left of the weekend.

MRI results

2011-03-18T20:29:00.000-04:00

They could definitely have been better. It seems that I have a crush injury to the talus bone of my foot. To put that in simpler terms...I squashed the bone in the inner part of my foot that my leg bones rest on. It's apparently more complicated than I thought. The biggest fear is bone death since that bone has a poor blood supply. If that happens then it's definite surgery. I'm to be completely non-weight bearing...no standing, no sewing with that foot no weight of any kind on the foot for another 4 weeks. In mid-April we'll x-ray it again. If the bone or tissues are dying we'll be able to see it, if not then we'll re-evaluate how things are going. I may still end up having surgery but it will be less likely if there is no bone death.

I'm going to try some sewing with my computerized machine to see if I can do it. I have my final exams this week and then off for spring break. The new quarter starts April 4 and I have 3 night classes. They are only 1 night each so I'm hoping that I can do this. I really don't want to get any farther behind in this program. *sigh*

Have a relaxing weekend everyone.

MRI for my stupid foot

2011-03-13T22:00:00.000-04:00

Well Wednesday is now MRI day. The doctor isn't very happy with the way this foot is healing so he wants to MRI it before giving an OK for physical therapy. If the MRI is good then we start PT; if not then we look at surgery.

Well I've got entirely too much to do to have surgery so I've made up my mind that it's going to look beautiful and we'll start PT soon. I'm cutting things to sew for the shop and for my family. I'm also doing lots of studying since finals are coming up. YAY for Spring Break!! LOL!

I'll get answers on Thursday afternoon so I guess I'll just have to keep the crutches handy and wait...patience is not my strong point either. ;)

Stupid sore foot....

2011-03-09T19:24:00.000-05:00

OK, it IS my fault that it's sore and bruised. I admit that. I'll even admit I knew that I have to pay close attention when I take both dogs for a walk (but I did need to shut the front door). However, I had no idea a foot could hurt like this for this long!

I saw the orthopedist today. We're going to have to do the MRI. This silly foot should be so much better than it is. I'm back to no weight bearing at all and still on pain meds. I've got classes and finals for the next 2 weeks so I just can't stay off it. I'm making as many modifications as I can but I'm the mom of a child with very unique needs. He can't do for himself so I have to do it. My wonderful husband is caring for our son most of the time but sometimes the little guy just needs his mommy...and I just need to hold him while I still can. (He's growing like a weed!)

I also turned in the paperwork for financial aid with the hospital. We were supposed to have an answer by today for the follow-up with the ortho. They decided to file all the paperwork away and not process it because I have insurance. Well the biggest problem there is that we DON'T have insurance and haven't for a few years now. I also reminded them of that when I took the paperwork in to the billing office. *sigh* Well they did get back to the doctor's office with my fee for the MRI. I have to pay a portion upfront then they'll decide how much, if any, to write off and set up payment arrangements for the rest.

I really must thank our Lord for this not being worse than it is and even more for my wonderful parents who are loaning me a credit card to put the co-pays on so the interest is lower than the company the hospital uses. God blessed me with a wonderful family who is taking really good care of me and my special kids.

Sorry this is all over the place. I needed to get it out and I'm sitting here all loopy from the Norco I'm taking. This stuff is worse than the Tea Cups at Disney World!

Almost broken foot...

2011-02-26T08:56:00.000-05:00

Well last weekend I decided to take a walk with both dogs before I started some Spring Cleaning. The coon dog unexpectedly got "locked" on something and bolted. Neither me nor the other dog were expecting it or prepared. I ended up with a possible broken foot and some seriously sore muscles.

We ended up at the Priority Care. They ignored all injuries except the purple swollen foot-they did x-ray it. The x-rays were inconclusive since there is a chipped bone in my ankle and we couldn't position my foot well due to pain & swelling. We're pretty sure the chip is old from when I broke it 14 years ago. We're going with the diagnosis...severe sprain/strain now. The upside is that I ended up with a lovely air cast walking boot instead of a traditional cast.
I still have numbness in my thumb and forearm that hasn't been addressed so I'm going to see the chiropractor this week to be realign my spine and "un-tweek" what I jarred out of place when I fell.

Needless to say there has been no college, no sewing, and no spring cleaning going on here and there won't be for a while. The orthopedist says anywhere from 2 weeks to 2 months for healing. *sigh* I'm already so bored.

Computer games for the challenged...

2011-02-12T19:55:00.000-05:00

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

2011-02-07T20:26:00.000-05:00

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).

"For A Cure" 3 very important words-that need to be shared

2011-02-06T21:29:00.000-05:00

Generally I don't get into all the messes of other's lives. I have enough drama here. However, this has come to my attention and it really saddens and bothers me. Apparently "for a cure" is not for use by any one but The Komen Foundation. ??? I understand the "pink" thing but they are suing an Atlanta Mito group who used the phrase. Ummm Mito is marked by a GREEN ribbon with the word "MITO" on or under it. We aren't taking ANY funds from The Komen Foundation.

Charity Brawl:Nonprofits aren't so generous when a name's at stake

I honestly want a cure for breast cancer! I have friends and family members who have or have had this horrible disease. That said, there are a LOT of diseases that need a cure. There are many non-profits looking "for a cure" for their chosen disease. I am VERY DESPERATELY looking "for a cure" for Mitochondrial Disease. It is slowly, painfully KILLING MY SON!! It will continue to devastate the lives of families who watch their young child wither away and are unable to even provide comfort. There are no treatments for Mito. There is no cure for Mito.

Breast cancer has had so much publicity that there are now treatments and even cures for some forms. Share the wealth please. Most people don't even know Mito exists much less what it is. I personally think that Susan Komen would be very saddened by this waste of funds for lawsuits over the use of 3 very important words used in the life of many with other life threatening or life altering diseases. :(

Happy Thanksgiving!

2010-11-26T22:33:00.000-05:00

Food, Family and a bit of relaxation....that is the description of our Thanksgiving. :)
My husband's mom, sister, her boyfriend and their new baby (ok, he's 5mths now) are in town for a few days and we had them over for supper. It was a nice time and very relaxing. I LOVE to cook and had plenty of people to eat it so it was nice.

My sister, daughter and I went to the Christmas Walk again this year. It was rather sad for us. My sister & I have been doing this on Black Friday for so many years. This year most of the little shops we like are closed, our "regular" restaurant was sold & is now a "coffee shop" and there was a serious lack of Christmas spirit in most of the shops. The place was well decorated and there were a few shops that really went out of the way to make it special though. We're debating whether or not to try again next year...guess we'll have to see how the economy is.

Sunday is MY day and I'm in the Christmas mood so I'm putting up our decorations and the tree!! Sorry honey but E. Scrooge is no longer invited so if you want to hang out with him...hit the "man cave". :)

Mitochondrial Diseses

2010-10-16T15:04:00.000-04:00

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.

Schools in session!!

2010-09-27T20:57:00.000-04:00

I'm back in college, again. The final degree will be Therapeutic and Clinical Massage and a medical Spanish certificate. I'm completing the message therapy program first so I can get to work but will be continuing on with the Associates Degree. That means I will be a Medical Assistant with a Coding Specialist diploma who is also qualified (& will be certified in) Clinical and Therapeutic Massage.
On another note...both kids don't feel well. My first day of college and I get a call from Mom...the High School called and Gracie needs to be picked up because she's running a fever and nauseated.
The joys of parenthood, lol! I'm waiting to see if she's well enough for school tomorrow. Boo doesn't have a fever but he just looks "off". I'm waitin' for him to show any other signs of being sick. He's due for his physical Friday so hopefully not. Oh, it's soooo time for me to go to bed! Maybe if I sleep it will all be better in the morning. Nite all!

Chaos!!

2010-08-18T23:55:00.000-04:00

August 2010...the kids started school, I started a new job, 4 relatively large custom orders were placed in a rather short period of time, both kids got very sick (102.5 fevers for 2+ days-still have them), new job just isn't working out so resignation tendered (Sun is my last day if I'm not too sick to go), I enrolled in college again, I'm still working on custom orders, and to top it all off.....I got the bug the kids brought home. Ahhh the chaos of August. Here's hoping September will be much more boring, LOL!

Our "Volunteer" Garden

2010-07-22T22:59:00.000-04:00

I usually have a pretty decent garden in the backyard but this year I just didn't have time to get it going. It's about 8ft x 12ft so we get a decent crop with room to move inside.

I did go out and weed in and put Preen down in late April but that was the last time I did much there. Well, this week I went out to see what was there since Jim told me that a few tomato plants came up again and I should cage them so he didn't mow over them. They "volunteered" to come back on their own so I didn't have to buy more this year, lol!

The weeds were awful!

I saw a few tomatoes and some dill so I figured I'd clear out the jungle growing there and bring the potted garden out back for better sun.

Surprise!!

There were about 15 tomato plants and 3 bell pepper plants. I left about 10 tomatoes and the bell peppers plus planted the potted ones from the front.

It's going to be a very nice harvest this year after all.

More minor surgery...

2010-07-20T20:59:00.000-04:00

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

Another job interview

2010-07-18T22:55:00.000-04:00

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

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

Can I get the recipe....

2010-07-07T23:21:00.000-04:00

WOW! What an awesome site! I found this site on a group I visit. They are great. They come up with recipes and a shopping list for you. We've tried several of the recipes already and even my picky family likes them. Even if you only use some of the recipes each week it's free and well worth it.
They're doing another give-a-way this week for the book "250 Home Preserving Favorites" and I REALLY want a copy of this book. It full of recipes for jams, jellies, and preserves. I've never done them before and these recipes are supposed to be fool-proof. If I win...I'll make the "Spiced Mango Jam" first, then "Lemon Blueberry Marmalade" and then "Orange Earl Grey Marmalade". I'll let you know if they are preserving-challenged proof when I'm done.
You can enter the give-a-way at their site but you have to subscribe to the newsletter first. Easy-peasy right! Heck it's for a free cookbook...besides fabric what could be better?! (LOL, I know...I'm a bit "off" sometimes...just call me old-fashioned and look away.)
Hop over to Can I Get the Recipe? for some fun new ideas and shake up dinner next week. :)

Guess what Boo did!?!

2010-03-25T21:14:00.000-04:00

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

2010-03-21T12:06:00.000-04:00

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

Ahhh....too much stress!

2010-02-21T20:50:00.000-05:00

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

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

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

Diaper Pictures

2010-02-15T20:10:00.000-05:00

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!!

2010-02-15T16:52:00.000-05:00

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

I finally got to....

2010-02-08T11:36:00.000-05:00

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

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

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

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

2010-02-07T22:59:00.000-05:00

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.

I really am going to sew...

2010-02-06T22:44:00.000-05:00

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

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

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

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

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

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

Sunday, Day 7 Downtown Disney and return home

2010-02-03T14:00:00.000-05:00

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

A new year and a new endeavor...

2010-02-02T14:30:00.000-05:00

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

Saturday, Day 6 Magic Kingdom

2010-02-01T14:04:00.000-05:00

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.

Friday, Day 5 Sea World

2009-12-03T22:56:00.000-05:00

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.

Day 4

2009-11-18T13:24:00.000-05:00

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

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

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

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

Day 3 continues...

2009-11-17T21:04:00.000-05:00

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!

2009-11-17T14:46:00.000-05:00

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...

Day 2 “So Many Parks”

2009-11-15T13:00:00.000-05:00

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.

Day 1 continued...

2009-11-14T13:50:00.000-05:00

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.)

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

2009-11-13T14:43:00.000-05:00

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!

2009-11-11T10:38:00.000-05:00

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!

It's almost time but...

2009-10-21T15:39:00.000-04:00

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!

3 weeks!!!

2009-10-12T19:25:00.000-04:00

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..

2009-09-04T10:19:00.000-04:00

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!

Wish Trip Dates came today!!

2009-08-27T18:15:00.000-04:00

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

Make-A-Wish came to our house!

2009-08-24T08:25:00.000-04:00

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!

Chicken Spots

2009-08-20T22:59:00.000-04:00

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!

Feeling better...

2009-08-02T19:10:00.000-04:00

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.

All done!

2009-07-22T12:00:00.000-04:00

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!!!!

Sleep Study Results

2009-07-21T14:40:00.000-04:00

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".

Surgery is scheduled

2009-07-19T11:15:00.000-04:00

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

And now we wait...

2009-07-08T12:16:00.001-04:00

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

Boo's having problems

2009-07-04T20:05:00.000-04:00

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.

Hmmmmm...

2009-06-26T10:13:00.000-04:00

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.

Update-Gracie

2009-06-01T12:15:00.001-04:00

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!!!

2009-06-01T09:37:00.000-04:00

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!

Weekly update...

2009-05-25T19:38:00.000-04:00

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!

Blended diet...finally getting some real support

2009-05-19T20:23:00.000-04:00

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 pyramid.gov 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 Update

2009-05-15T17:27:00.001-04:00

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 fall...now 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 weeks...it's a nice way to summerize the week.
Have a great weekend everyone!

"Facebook Fridays"

2009-05-10T15:00:00.000-04:00

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

2009-05-10T10:10:00.000-04:00

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. ;)

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

2009-05-09T14:06:00.000-04:00

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!

So tired...

2009-04-29T20:26:00.001-04:00

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!

Autism Awareness month

2009-04-09T21:14:00.001-04:00

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 judge...you may not have all the information to make the right judgement.

http://www.mayoclinic.com/health/aspergers-syndrome/DS00551
www.autismspeaks.org
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

A new diaper for our hospital times

2009-04-03T12:53:00.000-04:00

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 www.daddyflats.com and look at her awesome design. I just wish I'd have thought of this. ;)

2009-03-21T22:29:00.000-04:00

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

2009-03-21T17:20:00.000-04:00

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!

Boo's new pj's

2009-03-14T22:04:00.000-04:00

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.

A change maybe?

2009-03-11T23:13:00.000-04:00

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.

SOPO for Nikolas!

2009-02-23T09:56:00.000-05:00

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 children....it'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!

Valentine's Day 2009

2009-02-14T21:22:00.000-05:00

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.