A midwest mom shares and reflects on the love for her Dear Son and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2025. All Rights Reserved.
Sunday, February 06, 2011
Super Bowl Menu
Wednesday, February 02, 2011
Blizzard 2011 Photos From My Apartment
This is the same view out of my living room window at 8 a.m. this morning after over 20 inches of snow.
Another view of the same spot.
The view out of both windows this morning. Notice the snow is up to nearly the mid-point of the window.
The view of the left window.
The view of the right window.
Looking out of the dining room this morning. Not sure why the vertical apartment blinds look purple in this photo (they are white).
Another view.
In my bedroom, my cat Wiggles tried to look out the window. He cried when he coudldn't look out, lol.
Photo of Dear Son's Dad's house.
Here's a photo of a piece; I am not a food stylist, obviously. It was good though.
In other news, my pc was out for most of the day. I called my ISP and they were only taking emergency calls. I am pretty sure if there is a blizzard out there and I am stuck indoors without internet, that it's an emergency. Don't you think? O.K. maybe I am just addicted.
Dear Son had some problems today. He has been having more seizures lately and had a rather long seizure this morning. In addition, he woke up with a lot of coughing today and was wheezing. I've done two nebulizer treatments today and will continue treatments tonight. I had to give him some extra seizure meds so I contacted the pediatric neurologist fellow on call to get some direction with regards to the additional seizure medication and any respiratory depression. Of course, he suggested that we come to the ER... I explained that we can't get out, lol. I told him that we'll come if the wheezing gets worse. Currently, he doesn't have a fever, his oxygen saturation is o.k. 92-94 earlier today and 95 at 4 p.m. I have the nebulizer and oxygen at home if needed for emergencies. I am fairly confident and know when I am in over my head but I did feel better getting some clarity with regards to the seizure medication and the respiratory depression. I figured it was better to call earlier in the day than to wait until we had more issues later tonight. I'll watch Dear Son closely and we'll see. Of course, I have increased the organic, virgin coconut oil to help with the cough.
Update 2/3/10: Dear Son seems better today. I gave him organic, virgin coconut oil yesterday as follows: 1 tablespoon with 6 a.m. meds, 2 tablespoons with noon meds, 1 generous tablespoon with dinner meds and 1 tablespoon at midnight, all via his gtube. (If you are using coconut oil for any type of healing, you do need to start slow. We started several months ago with only 1 tsp. per day. If you try to go to this much all at once, you will endure severe stomach upset/cramps and diarrhea. Once you are used to it, you can increase it when you start getting sick. We use 1 tsp./day when we are well.) I continued with the coconut oil today with all meds however I am only using 1 tablespoon at each meal. He slept well last night and was able to breathe fairly well through his nose all night. He did sound crackly around midnight and a few times during the night and did cough a few times this morning but overall was about 70% better than yesterday. While he was quite tired and lethargic yesterday, he also seemed like he didn't feel well and had a sad face as if he didn't feel well all day. This morning he smiled. After breakfast, I gave him another nebulizer treatment and he seemed better. He slept on and off but did wake up, spin the recliner around with his feet and seemed happy. By 1 p.m. today, he was about 85% of his total self. I can't begin to tell you how amazing it is that he could turn around from where he was at yesterday afternoon. He was wheezing very loud at that time and having a lot of seizures (sickness usually lowers his threshold). It was the same as he was any time he's had pneumonia. It's really amazing and quite powerful at the same time. Powerful in the sense that as a mother I have some options that I can do at home to help Dear Son to feel better and prevent a hospitalization. We aren't quite out of the woods yet, but I do believe that he is doing remarkably better than yesterday. This is quite an achievement for a chronically ill, severely disabled young man with a progressive neurological disease. I don't expect this organic, virgin coconut oil to be the end all for him or cure everything but rather, it's a tool that I can use to help prevent a pneumonia. I do suspect that there may and will be times when it may not work but for now, I am going to celebrate the fact that it's been six months without a hospitalization.
Tuesday, February 01, 2011
The Blizzard is Coming, The Blizzard is Coming...

To prepare for the week, I did my weekly grocery shopping yesterday. The parking lot was so full that I had to wait until someone left to get a spot. That's crazy! On the list this week were comfort foods. No sense sitting indoors with a blizzard outside without some good old fashioned comfort food.
On the menu this week will be chicken pot pie, made with homemade mashed potatoes and some broccoli on the side. Meatloaf is on the menu as well-I have Grandma's recipe that I enhanced a bit and it's really good. I even tried to get some tomato soup but they were sold out! Did they not know a blizzard was coming! It was the only type that was sold out. I am not much of a soup person and typically make my own but I do have a thing for tomato soup on occasion. Anyway, comfort foods are in the house.
Of course if you have a Blendtec mixer, you can just put all of the ingredients in the blender at once but for my little Cuisinart, you have to do the steps separately so the blender blades don't break. I also like using organic ingredients to boost the nutritional value. There are some studies that suggest that there are possibly more nutrients in organic fruits and vegetables and while there is not a concensus, I genuinely believe that since many of the organic fruits and vegetables taste better, that they have to be better for you. Even if the nutritional value were similar, you can reduce the toxins by choosing organic and you are guaranteed that the food is not genetically modified.
So our focus for the next few days will be keeping warm and watching the snow fall. In addition to the snow, they expect winds of 50 mph tomorrow. Dear Son will be keeping warm in his NFL Bears Snuggie that I got him for Christmas. Dad likes it so much, he told me to pack it in Dear Son's suitcase over the weekend and told me it might not be coming back, lol.
Wednesday, January 26, 2011
Office Visit Update!

With eight weeks of starting the organic, virgin coconut oil, Dear Son began to move his legs and feet. He started trying to kick the Christmas tree a little bit before Christmas. After his hospitalization and being on the ventilator with the H1N1 in 2009, he was not able to move his legs, his feet or even a toe. It was as if he was paralyzed since there wasn't any movement at all. Now he can use both feet. He can use his feet to turn the recliner around, he can lift his feet off the floor as in trying to kick something and he can use his feet to rock himself in the recliner.
Within 12 weeks of starting the organic, virgin coconut oil, he was back to his old self. He could hold his head up again. If you remember, in nearly every picture from his Make a Wish trip and even thereafter, his head was always hanging down. He wasn't able to hold it up. Now he can sit up straight in his wheelchair and hold his head up. He laughs a lot more and likes to play again. He vocalizes more and is more affectionate. He is able to move his arm better so I can wrap it around my neck and he can give me a hug. He can squeeze his arm enough for a hug. The best part is that he is able to enjoy life again. I came into his room the other day to get him up. He had been sleeping a while and when he heard me, he had this huge smile on his face with his eyes still closed. I came up to him and started rubbing his arm and back asking him if he was ready to get up and he opened his eyes and was smiling.
When we took him for labs last week at Big Academic Medical Center, he was able to sit up straight in his wheelchair, hold his head up tall, look around and even made eye contact and smiled at me from about 30 feet away! It was wonderful to see! He's been growing too. I think he grew another inch or so in the past month. His torso no longer fits on the length of the bed pads so I am guessing Dear Son is really getting up there now. I am estimating he may be around 6'2" or even 6'3" tall. His teacher thinks that is a pretty good estimate as well.
Recently, I read an article which may explain in part why the organic, virgin coconut oil is working so well. I am not implying that it has cured Dear Son of his progressive disease in any way, but rather, it is an excellent tool in keeping Dear Son healthy and keeping respiratory illnesses away. Dear Son can't cough or clear his airways so respiratory diseases for him are life threatening . They have told me he will die of pneumonia. By using the coconut oil, along with using his nebulizer once a day and general good care, he is staying well. He has not had one cold, one infection of any kind. Any time he sneezes or sounds like he is wheezing, I give him a tablespoon of coconut oil. I mentioned previously how I used it for him when I talked about how we were staying well this winter with one of those items being the organic, virgin coconut oil.
This may explain why coconut oil is helping Dear Son. Now I am using a very small dose with him, only 1 tsp. per day plus extra when he symptomatic.
Aside from Dear Son feeling and looking better, I should mention that he still struggles with seizures (I am not implying in any way that I used coconut oil for seizures, just to be clear.) I talked to neurologist about this today however the labs looked good so we will keep his meds at the same level and continue to use his vagus nerve stimulator as needed.
But the best news of the day was that the doctor is allowing Dear Son to attend school three mornings a week! I contacted Dear Son's teacher prior to our office visit to see how he was handling school and to get her opinion on whether or not she thought Dear Son could manage another morning at school or to see if she thought he should go longer on the days he went to school (meaning a full day). She thought another morning would work better for him.
In other news, I'll try to post a bit more frequently. I have been a bit torn over the blog lately. Essentially, I've been wanting to write about a few different things, organizing, cooking, homemaking, etc. versus blogging mostly about Dear Son. I've struggled changing topics a bit and with regards to organizing; I've been reluctant to write about that since that is my business and essentially my organizing tips are really my intellectual property so to share all of my organizing doesn't make sense from a business perspective. Regarding Dear Son, I've done some more writing and am thinking about seriously putting together a book. Some of the topics I am writing about fill up more than a post or two and would be more appropriate in a book. I am thinking instead about some e-books for topics related to organizing and organizing for special needs.

I have also been adding quite a few items to my Amazon store that is located here. Essentially, I've added a lot of gifts for special needs children as well as kitchen items and green cleaning items. It's still a work in progress and I'll be talking more about it as the weeks go on.

Coming soon though, will be my kitchen reveal. I've made some cosmetic changes to my kitchen and will be posting those in two to three weeks or so as well as talking about my philosophy about decorating and how what we eat and how we cook impact our health and are equally important when decorating and homemaking in general.
In the meantime, I'll probably try a few different post topics over these next few weeks. My biggest struggle is time since I only have two mornings a week to myself when he is at school and most of the time I am running errands. This past year has been the hardest for me, not only from the lack of sleep but from performing 24 hour a day care without much of a break. Thank you for being so patient and continuing to check in.