Monday, May 25, 2009

Weekly update...

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

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

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

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

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

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

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

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

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

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

Tuesday, May 19, 2009

Blended diet...finally getting some real support

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

Friday, May 15, 2009

Friday Update

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

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

Sunday, May 10, 2009

"Facebook Fridays"

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

Happy Mother's Day

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

Saturday, May 9, 2009

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

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

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

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

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

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

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