Friday, April 29, 2011

A journey unexpected

A year ago, May 12th, I was arrested and spent the past year in prison. Well, technically jail since I spent less than a year in there.
I somewhat innocently went in for a 27 week ultrasound and came out with the firsthand knowledge that life is indeed fragile. So fragile that I felt like a rat in a cage. Now, I know that is not God's doing. After all, he gave His only Son to die for me so that I may have freedom. Which reminds me...I wanted to also recommend reading The Shack.

I realized today that I am finally feeling free. The life that was bestowed upon me was not what I signed up for. I cried to my sister-in-law for darn near 2 hours last year when I was awaiting the amnio results. I felt like life-as-I-knew it was ending.

Well, it was. It has been a tough year. I was forced into a life I didn't think I wanted. I thought my life was going to be less than ordinary.

Come to find out, it is extra-ordinary.
Remember those Thank-you's I mentioned a couple of weeks ago? Well, yesterday I went out to the mailbox and came back with a hand-written thank-you for the thank-you from none other than the lead surgeon during Calvin's heart surgery. When I walked in and saw Calvin I had this big smile for him. If it were not for Calvin I would not have this life. It is true. It is exactly what I cried about. Life is so fragile. I am feeling so free and yet I am so aware of the fact that I will once again feel like a prisoner. I will suffer again in this life. But in the meantime, I am going fly like an eagle, into the future. Photobucket
Meow-y...more on HIM later (he is new, as of tonight, and I think he is cute...)

Thursday, April 28, 2011

I have a dream...

I often find myself thinking I'd like to be a photographer and a writer. PhotobucketPhotobucket
The problem is I do not know what to write about AND I have to work on become a better photographer. Photobucket
But hey, why not? Okay, I just told you why not.

I have been practicing with my camera a lot. PhotobucketPhotobucket
I like Shuttermomma. They have helped quite a bit. There are some online opportunities to share photography and enter in contests. However, I just do not prioritize much other than keeping up with the kids and the house. I plan to just keep practicing more and when Calvin is not nursing so much I will have time to delve in a bit more. PhotobucketPhotobucket
I have even been hoping to find some seniors to try portraits on.

I had a dream that Joe bought me another present; an upgrade to my Canon Rebel xsi. I do not want the upgrade at this time, but it is telling that I had a dream about photography.
I am reading A LOT to work on learning about writing. I would like to think that when I am dead my book will still take up space on a library shelf somewhere. And, maybe people with think of me now and then and remember something amazing I created.

I was really moved by Nicolas Sparks' Three Weeks With My Brother. I highly recommend it. I am over half-way through Water For Elephants. I just started it on Sunday. I love reading and I did not used to be so into it. It is my escape. "Take me away, to a better place".

Tuesday, April 26, 2011

9 months old

Where does the time go?!

Calvin weighs 13 pounds and 7 ounces and is about 25 inches long. So, if you have been keeping track: He is sloooow to grow. He wore a 0-3 month sized outfit today!

I am convinced that this is the way it should be with every baby. My sister has asked me a couple of times, "Why do they have to get bigger?" (Adam is 1 week today). I feel blessed to have a baby longer. Of course there are some frustrations now and then, but overall I have really been embracing Down syndrome. It is perfect because Calvin is exactly who he was meant to be. Tiny, sweet, cute, and well, see for yourself:
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Hey there Easter Bunny! Yes, I am nosy and my mom loves that I insist on checking out what's happening around me! By the way, why didn't I get any candy for Easter? Hmm?
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Hey there Cous! You know that's made out of plastic, right? I prefer more flavor.
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See Mom, I am looking older even if I am still a tiny tot.
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So big!
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Thursday, April 21, 2011

my house smells like dirt

There is good reason for that.
Joe's other love, Dahlia ('s)

Well, it was getting warm here (I woke up to an inch or 2 of snow yesterday morning) so that meant the beginning of garden time. Well, garden time never actually ends around here. Joe used to say things to me that included the phrase "when the weigh-off is over". Well, we both know better now and have adjusted in much the same way we have adjusted to other things around here.
burying heating cables - they will also have lightbulbs on thermostats so if you drive by at night and see a glow, you know it is too cold out for pumpkins

Confused? Sure. Let me try to briefly explain. My husband started growing giant pumpkins way back in the day. He has won some weigh-offs and is pretty involved and knows many fellow pumpkin growers across the world. It is more detailed than this but I do not keep up with the, um, details.
I know you are jealous of my inability to use my oven for the next month or 2 (the regular pumpkins will have their turn) - Joe just had me check on these and he has 2 germinated seeds, including the 1810 Stevens (Chris' world record pumpkin seeds have a name)

Joe is the president of the local growers association: SCGA or St. Croix Growers Association (website found here). He had a dream, that kind of thing.

Well, since Joe's buddy Chris landed himself an orange dress coat, a trophy the size of a small refrigerator, and a few moments with Regis and Kelly, Joe has been really busy - visit here for a peek at last years SCGA weigh-off in Stillwater, MN.

If you listened carefully to that stint on Regis and Kelly, you'd catch that Chris started his seed on April 18th last year. So, Joe, Chris, John, and our neighbors Pete and Lorelee gathered on Monday night to file (with a nail filer), soak, and bury their dreams. Joe is pretty motivated this year. Don't tell him, but I don't think the orange coat and small refrigerator trophy are all that appealing. However, a trip to NYC for just the 2 of us would be nice.
Evan loves working in the garden. He is Dad's right-hand man. Nolan is still trying out what it tastes like before moving on to productivity.

Wednesday, April 20, 2011

Wordless Wednesday: Adam Isaiah (edited now that he has a name)

7, 10 and 20 inches long:PhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucket
Mom holding her 6th grandchild, 5 which are boys - still more kids than grandkids...(hint hint Siblings)
Does it get any better than this??

Tuesday, April 19, 2011

a letter from the dentist


Dear Ilisa,
Just wanted to thank you for the beautiful card commemorating Calvin's progress in life.
You were very thoughtful to make that happen. It's a story of courage, conviction, perseverance, strength and faith.
You, your husband, Calvin and the whole family are to be congratulated.
Let me know if you need any help from me.
Sincerely, John Laughlin

Last month I mailed out Thank-You's to Calvin's care team - including the cardiologist, surgeon, NICU, nutritionist, etc. The card had pictures and a short update on Calvin.


Wednesday, April 13, 2011

a bit of heaven

So, a bit off topic from metronome therapy...

I went out for a run on Saturday morning. The weather was mid 50's and humid. I thought it was perfect for a run. As I crossed the threshold between my driveway and the road, I looked around and noticed no cars were coming so I threw out my arms and exclaimed "I'm going to miss this when I die". I felt so positive. My run was great (my back is much better thanks to stretching and a new bed - a TempurPedic). I hope I can run in heaven. I hope there is varying weather. I don't know what to expect, but why not?

Tuesday, April 12, 2011

Functional Neurology part 2

Functional Neurology continued...
The following information was derived from a combination of our consultation (last Friday) with Dr. Theirl (from Functional Restoration) and an interview Dr. Theirl conducted with Natural Mom's Talk Radio.

Starting in early infancy aspects of multiple senses such as light, movement, sound, smell, and taste are present and ignite brain development. There is one constant thing that is always there no matter what you do: Gravity. Because it is always there, our bodies and nervous systems are designed to move through gravity with ease and use constant stimulation from joints and muscles to activate our brain in a way that supports cognitive development. However, some people struggle to move through gravity with ease. One thing Dr. Theirl looks at is crawling. He finds that often times people with cognitive functioning deficits had trouble crawling or may even benefit from crawling improvement as teens or adults.

Crawling drives your cerebellum function in what is called cross cord mechanisms. You want to make sure your cross cord mechanisms are strong.

As I mentioned, it might be critical to re-teach crawling patterns. In Calvin's case, we want to focus on teaching him crawling patterns because he has Down syndrome and therefore struggles more with coordination, patterning, and organizing. This has been evident since he was a baby and he had to work at feeding. It took time for him to know what to do when the bottle came in to his mouth. He is finally nursing well enough that I do not have to have a drip cloth under his cheek. Of course not every child with Down syndrome struggles in the same way, which is why we are personalizing Calvin's treatment plan to meet his needs.

Calvin needs help in patterning. This is seen in other ways as well as his inability to crawl (again, not that he would necessarily be expected to crawl yet, but it is a good idea to start teaching him how to pattern his hand and leg movements).

So, to do so, we are using an interactive metronome to provide both sound and rhythm to have him pattern to. You can get a free metronome right online and here is the one we've used: FREE METRONOME

Interactive metronome strengthens movement patterns to stimulate the cerebellum. As the cerebellum gets stronger it helps reflexively with movements.

We set the metronome to 60 beats per minute (one per second) and lie Calvin on his back. Then, for at least 15 seconds (longer if he will tolerate it) we mimic crawling. To do so, you need 2 people: One at feet, one at hands. Then we touch Cal's palm to his opposite knee to the tempo of the metronome. Simple really. Really simple.

After the 15 to 30 seconds, we stop the metronome, flip him over, and support his waist/weight. We put a toy slightly out of reach and watch for his hands to start alternating to reach that toy.

Flip him back over after he reaches the toy (want it to be positive, so reward even if the movement is not there) and start over. We want to do this 2 times a day and Dr. Theirl said we should see him start to pattern fairly soon.

Unfortunately Joe has been sick with a stomach bug and we have not begun it but plan to tonight when he gets home from work. I will keep you posted.

If you are interested I recommend listening to that interview but it is long (30 minutes or so). Interactive Metronome Therapy is not new, but it is to us.
Dr. Theirl said he would check on Calvin in a couple of months when he is back in the area. I am very grateful for any work I can do with Calvin. I have many thoughts but I will save them for another post. It is simply not the easiest thing to parent a child with special needs. Us parents have to be our child's advocate and it is my desire to be open to every possibility. And, when it is scientifically supported, I feel comfortable giving it a chance. If I close doors simply because I do not understand them, then I could be doing more harm than good.