Tuesday, July 19, 2016
Wednesday, July 13, 2016
Every 6 months Ian gets checked out by his pulmonary doctor. You never know what will happen, although sometimes I have my feelings about it. Today was a fantastic appointment. Dr. S was extremely happy with Ian and what she saw. His CO2 level was 44 (normal is 35-45). His O2 was 100. Very stable on the HME. He has been off of antibiotics for about 5 months and doing well. Dr. S made no changes to Ian's treatment plan or his vent settings. And best of all,
HE WAS CLEARED FOR CAMP!
Smiles all around after the appointment. We go back in 6 months.
Tuesday, July 12, 2016
According to http://www.mayoclinic.org/
A migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and can be so severe that the pain is disabling.
According to http://www.ninds.nih.gov/
Pain in its most benign form warns us that something isn't quite right, that we should take medicine or see a doctor. At its worst, however, pain robs us of our productivity, our well-being, and, for many of us suffering from extended illness, our very lives. Pain is a complex perception that differs enormously among individual patients, even those who appear to have identical injuries or illnesses.
One of the biggest struggles for us with Ian at times is pain management. When I get a headache/migraine, I know my medicine and sleep will help it to feel better and eventually go away. For Ian, depending on the day, depends on what helps him to feel better, I don't think the pain ever goes away. I believe he has always and always will be in some kind of pain. Sometimes it is as easy as giving him one dose of pain medicine while other times it takes multiple doses of multiple pain medicines. And getting him to take a nap, well that is another challenge, unless its medicine induced.
I am not sure where or why I am writing this except for the realization that the next time I have a headache/migraine, I will try to remember my pain is minimal compared to what my little man goes through on a daily basis. I will also try to remember the next time Ian's in pain, his pain threshold is probably relatively high and work through it with him.
Tuesday, July 5, 2016
Thursday, June 23, 2016
|Ian and Jared, his big brother|
|Mommy and Daddy to into it and trying throwing some darts as well.|
|Ian and his friends....they are all still pretty clean, the paint fight happened after the masterpiece was done.|
Tuesday, June 14, 2016
As I lay in bed, my heart hurts. Today was a rough day for many different reasons. First, let me say that Ian's ok and he's been having good days.
We have had some things going on lately which have made me realize not all people are good. Well I've known it but it was just reinforced. In time those people will get theirs. Karma people, karma.
Today, both the SMA world and PCH world each lost a child. Two in one day, bamb hit me right in the face. One was quick, sudden. The other wasn't, over the past few days the family watched their child actively pass away. On Facebook, I am part of a SMA group as well as a PCH group so I read when kids pass away from these horrible diseases. Today really hit me, harder than it has in a long time. I am trying to find comfort knowing the kids are not in pain anymore. But the families are in a different kind of pain then they were before, one I know one day I will have to endure. I'm not ready for it, I don't know if I'll ever be ready for that pain. Every day, there is pain, watching your child be in pain, knowing there is not much you can do to make it better. The pain will be different.
As I lay here, awake, when I should be sleeping, my heart aches. For those families who lost their children today. My heart aches for my family as we know one day we will lose ours. For now I'm going to try to get some sleep and wake up tomorrow to a new day. One which I will treasure, dream, and live.
Monday, May 30, 2016
This weekend I have the pleasure of attending a dear friends daughters Bat Mitzvah. I was sitting in the back of the sanctuary during the service, so were all the kids. Seeing the 12/13 year old boys...got me thinking. What would Ian be like if there was no VRK1? What would his voice sound like? How tall would he be? Who would his friends be? How mischievous would be? So many what if's...
Some days, the what if's don't even enter my mind. Ian is Ian and I am grateful for him and all he has become. He has taught us so much over his 13 years, and I know he will continue to teach us with whatever time he has left. I have realized to not worry about the things which we have no control of but to focus on what we do have control of and make a difference with those things. I, usually, don't take things or people for granted. We have tried to teach Becca the same, although I don't think she is there yet, I have faith that as she continues to grow she will get there.
Some days the what if's are all over the place and in my face. There is no way to make them go away, and my mind just wonders and wonders. From reading Facebook post or other blogs of other parents who have already lost their beloved children, I know they will always be there. Once he is gone, I'm sure as each milestone comes the what if's will as well.
Sitting in the back of the sanctuary on Shabbat, the what if's entered my mind for a period of time...but before I knew it they were gone and I was thankful for who my family is.
Always remember to treasure, dream and live!