Happy Thanksgiving!

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

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!!

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!!

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

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...

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

Another job interview

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

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

Can I get the recipe....

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!?!

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

MRI's & EEG's

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

Ahhh....too much stress!

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

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

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

Diaper Pictures

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

Later Gator cotton knit outer-super popular print


Cotton velour inner-gives a dry feeling & absorbency


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

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

Pneumonia....grrrrrr!!

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

I finally got to....

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

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

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

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

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

The "good" news...

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

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

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

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

The "not so good" news...

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

I really am going to sew...

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

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

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

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

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

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

Sunday, Day 7 Downtown Disney and return home

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

A new year and a new endeavor...

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

Saturday, Day 6 Magic Kingdom

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

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

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



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



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