Thursday, March 29, 2012
Wednesday, March 28, 2012
The reason it has taken me awhile is because my friend Cheri sent me home with this movie the other day. It is all I want to do - watch it! I finished it last night, so now I can bind my quilt, and of course I have more raspberries to thin out and yard work to do today. It is a gorgeous day today.
I have never heard of this BBC movie, Wives and Daughters, but I must say that I enjoyed it very much. It is a sweet story, and of course the fellows are so handsome!
Monday, March 26, 2012
This week is purple cupcake week. If you see a purple cupcake for sale at your favorite bakery, please buy it and smile. It is The Great Purple Cupcake Project, a sweet epilepsy awareness initiative this week. It is an effort to increase awareness about epilepsy, a condition that affects over 3 million Americans, including our 6 year old Kendal.
She was diagnosed with "infantile spasms," a severe form of epilepsy. Infantile spasms is one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation. However, early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development.
Most children are diagnosed with infantile spasms between the ages of 4 and 8 months old, and Kendal was 20 months old when the seizures began. That is a good thing, as 70% of infantile spasms cases never mentally progress beyond the age when the seizures began. Unlike treatment of other seizure types, there is only one goal for treatment of infantile spasms: the complete control of spasms. If spasms cannot be controlled, the child is unlikely to do well developmentally, and even a 90% reduction of seizures does not provide for this possibility.
Kendal was put on a anti-convulsion medication which reduced the seizures from about 17 or 18 a day to around 9 or 10. I was grateful as a parent, as I read up on infantile spasms and realized some kids never get any better at all. The seizures usually occur when the child is tired or just waking up, and sometimes, that is how I knew Kendal was awake in the morning and awake from her naps - I could hear her banging into the wall in her bedroom on her bed when she woke up while having a seizure.
|Kendal in March of 2007, my happy sweet girl about a week before the first seizure.|
The anti-convulsant and the ACTH had some crazy side effects - high blood pressure (obviously), she couldn't sweat and could overheat very easily (makes for a hard summer!), her immune system plummeted, horrible kidney stones, increased appetite, no speech nor emotion, and ACTH has a prednizone effect, so she ballooned right up. I am sure there are a few more, but I must have blocked them out!
She stopped talking completely, and for about 6 weeks the only sound she would make is when she would waddle over to her high chair, and shake it while whimpering - telling me she wanted to eat. I really don't even recall her crying during this time. She was miserable, and looking back at these pictures, makes me realize just how crazy and uncertain life seemed to be then.
What a good experience it all was and how grateful I am to have the resources available to us to help our little Kendal. She attended all day Kindergarten last year and did very well, considering the statistics.
Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen, an infantile spasm specialist, has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients. In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH. Of the 147 surviving patients, 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome.
Wear purple this week, and go make a batch of purple cupcakes for epilepsy awareness!
Sunday, March 25, 2012
Wednesday, March 21, 2012
Monday, March 19, 2012
So since my yardwork has been put on hold for a bit, I get to sew. I should be working on this project: new cushions for this poor old chair that is falling apart. I bought some fabric to do so two weeks ago and still haven't done anything with it yet.
Saturday, March 17, 2012
I also want to plant my garden area with trees, not sure why,
just do, and I will, because I can!
chickens. I think he is going to make me a coop.
Pretty sure my dad is not, hee hee hee. He is a good dad.
when you compare them to the chicken coop we
grew up with!
Just a picture I took of the chicken coop's door at my grandma's house. It was a nice coop in the day, but I bet a chicken has not been in there in almost 30 years. This was such a fun and mysterious place when I was growing up. I loved to go collect the eggs with my grandma.
I also have two boxes of white and purple irises. I failed quite a bit in my fall yard cleanup, so that means I get to do it this spring, while 7 months pregnant! Smart girl Rachel! So here goes to the cleanup!
A bit better afterwards. After this I took the boards apart from one box. As soon as I get the irises divided and on their way to someone else's yard, this is where part of the coop will be built. I think it will work out nicely.
So that brings me to this - if anyone wants irises, let me know. These are the exact plants in this box. They all need to go and they ship nicely!
Have a wonderful St. Patrick's Day folks! Eat some steamed cabbage and corned beef, and smile!