It's weird. I used to follow all of the CDH blogs and cry when babies earned their wings. I would click and find new families to follow and pray for. But since Kenny's been born, it seems like I feel like my time is just spent elsewhere. I don't like that though. I don't even find myself having time to check the blogs that I follow. I also am a part of so many different 'cliques' of families now. My world wide web of friends on FB seems to be from so many different walks of life now. We are a home with so many different acronyms that sometimes I don't even know what i mean anymore. I have nurses asking me what my education is!! Well it's grade 12. And the rest is self taught because of my kids.
I find it interesting. There is a family that I met at Mingle and Play at the hearing center this summer. Their daughter has hearing loss as well. So we are 'friends' on FB. I had met another family just before Christmas last year on FB. Their son has PVL. That is how I found out that Kenny was probably having infantile spasams...thanks to their video that they posted of their son. Then there is another family that I met on FB and their child has CDH and hearing loss. And because of all of these issues I have them as friends on FB. WELL they all live in Prince George and know eachother as well. I just feel like small world! And really, I am a part of too many communities!
Friday, November 26, 2010
Saturday, November 20, 2010
Poor ol' St. Nick
So I took the kids to get their annual Santa pic done...oh poor Santa. Oh well this is what it is...and we love it!!
The kids an update...since I'm so awful at updating lately. Busy busy busy!
Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!
Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!
Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!
Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.
I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.
The kids an update...since I'm so awful at updating lately. Busy busy busy!
Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!
Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!
Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!
Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.
I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.
Thursday, October 28, 2010
Updates
So we have a couple of updates...
we are officially on a weaning process with the Vigabatrin. I must say I'm a little bit nervous about it, but we have to do it at some point right??!! So it will take a total of 4 months to take him down off of it.
We also saw the visual impairment doc today...and Kenny's vision went came from 20/2000 all the way to 20/360! Such an improvement. Well it's because the infantile spasams are undercontrol. He did let me know a few other things though. That if Kenny does have a metabolic disorder that later in life that could effect his vision again...oh well, and predict or control the future at this point. Just something for me to keep in mind. My kids are all doing so well right now! So well that they are ganging up on me and driving me crazy some days...lol! I think it's cause winter is coming and they really can't do too much outside play and that suck's. Oh well, we will survive...and they will find new and interesting ways to drive me nuts...but that's normal right...lol!
we are officially on a weaning process with the Vigabatrin. I must say I'm a little bit nervous about it, but we have to do it at some point right??!! So it will take a total of 4 months to take him down off of it.
We also saw the visual impairment doc today...and Kenny's vision went came from 20/2000 all the way to 20/360! Such an improvement. Well it's because the infantile spasams are undercontrol. He did let me know a few other things though. That if Kenny does have a metabolic disorder that later in life that could effect his vision again...oh well, and predict or control the future at this point. Just something for me to keep in mind. My kids are all doing so well right now! So well that they are ganging up on me and driving me crazy some days...lol! I think it's cause winter is coming and they really can't do too much outside play and that suck's. Oh well, we will survive...and they will find new and interesting ways to drive me nuts...but that's normal right...lol!
Thursday, October 21, 2010
Not sure how to keep up!
It's been so crazy busy nuts around here. So hopefully i can do a quick catch up. I got some new AFO's being made for Kenny. his last one's his feet just pushed out of them. I chose a nice green camo for him! Must be stylish. He's turned into such a happy kid. So weird because he was a screamer for so long. His hearing test has come back completely normal. So no hearing loss. We have met with Bio-Chemical disease control. The tests that they have done thus far haven't told us much, just what it isn't. So now more blood work. They are convinced that it's something metabolic. It's just ruling it down to what it is. So the PVL may not have been caused by the tramatic birthing process. Oh well, doesn't change the damage done, but if we find out what it is it will prevent more from happening.
Kristen is talking! and talking and talking! Wow the kid is actually communicating, and signing. if i am busy and she's talking to me, she will actually sign it! so cute! I just can't believe that in a matter of 4 months she will be FIVE!!! Are you kidding me! FIVE! oh dear. how quickly they grow!
Courtney is LOVING pre-school! she is so cute, she says "we go to Perrin's??!! yeah!!??" the teacher's name is Mrs. Perrin...lol
Joe is doing his Joe thing at school. We are still working on basic's with him. he's having trouble recognizing his letter's...still! It's frustrating for me to watch and sad at the same time. but he tries so hard!
Me, well i am going to need a break soon. I don't know how i'll be able to keep up this hectic schedule that i'm doing right now. but winter break will be here soon!
Kristen is talking! and talking and talking! Wow the kid is actually communicating, and signing. if i am busy and she's talking to me, she will actually sign it! so cute! I just can't believe that in a matter of 4 months she will be FIVE!!! Are you kidding me! FIVE! oh dear. how quickly they grow!
Courtney is LOVING pre-school! she is so cute, she says "we go to Perrin's??!! yeah!!??" the teacher's name is Mrs. Perrin...lol
Joe is doing his Joe thing at school. We are still working on basic's with him. he's having trouble recognizing his letter's...still! It's frustrating for me to watch and sad at the same time. but he tries so hard!
Me, well i am going to need a break soon. I don't know how i'll be able to keep up this hectic schedule that i'm doing right now. but winter break will be here soon!
Sunday, September 26, 2010
We did go home after two nights
I am so bad once I get home to remember to update my blog. We got discharged on Tues. So only two nights in the hospital. Kenny is doing well now. We had a follow-up appointment with Neurosurgery on Thurs. Everything looks good so far. they said that they'll do a repeat MRI in three months time. But for now, he's looking good. we have a follow-up with the pediatrition tomorrow. I'm going to ask for asthma testing. I don't believe that it was just broncitis with a cold. The way that he was breathing and wheezing took me back to the day's that my dad had some bad attacks. Even if they can give me some puffer's so that I can 'rescue' him before it gets bad...that would be very helpful.
Tuesday, September 21, 2010
Shamus Aiden Grant
My best friend delivered on Saturday morning. Shamus Aiden Grant was born sleeping on Sept. 18, 2010. He was helded by his mommy and daddy 18 weeks too early. The love him was and is unconditional. These parents have had such a heart break, but such a beautiful birthing experience with the Dr's, Nurses, and Chaplain's support at the hospital. We all continue to pray and surround them with love and support as we can. I have posted with permisson a video montougue that Shamus' Grandpa put together. It is truley beautiful, and it is something that will be with all of us forever.
http://www.youtube.com/watch?v=CkrEduaMwJ0
I unfortunatly don't know how to directly put up video's on the blog yet, but here's the link.
What is the reasoning? Why do things like this happen? Why does the pain have to be there? Why do we need to be put through such heart break? Why are lives cut so sort before they begin? Is it Ok to be angry at God? If not who do we get angry with? Is this just a test to get us to look for our anwers? If so, this test suck's sh!t!
I wish with all of my heart that there will be healing and softening of everyone's hearts involved. I know that the pain will never go away, and it will just be more of a day to day coping.
Thank you to everyone in the blogger world that finds my life interesting enough to follow for all of your thoughts, prayers, and comments. I know how much they mean to me, and can only imagine how much they mean to the family.
http://www.youtube.com/watch?v=CkrEduaMwJ0
I unfortunatly don't know how to directly put up video's on the blog yet, but here's the link.
What is the reasoning? Why do things like this happen? Why does the pain have to be there? Why do we need to be put through such heart break? Why are lives cut so sort before they begin? Is it Ok to be angry at God? If not who do we get angry with? Is this just a test to get us to look for our anwers? If so, this test suck's sh!t!
I wish with all of my heart that there will be healing and softening of everyone's hearts involved. I know that the pain will never go away, and it will just be more of a day to day coping.
Thank you to everyone in the blogger world that finds my life interesting enough to follow for all of your thoughts, prayers, and comments. I know how much they mean to me, and can only imagine how much they mean to the family.
Monday, September 20, 2010
We've been admitted
We came home early from Timberline Ranch on Sunday morning, Kenny was breathing very quickly and wheezing. So off to the walk-in clinic I go. As soon as the dr came in, I just said please don't send me to the ER. Cause I knew. So off to the ER we went. His stats were 85%!! Good thing I came in. So really, we bypassed everyone in the ER waiting area. I got to the bed, and there were three people on him. the RT gave him a dose of ventilin, and he immediatly got better. But his stats without O2 were still too low. So here we are spending the nite in the hospital. They started him off with 3 L's of O2. Then before bed he went to 1.5 L's. Now at 1pm on Monday he has been off of all O2 for an hour and a half. He doesn't have pnemonia, and he doesn't have RSV or influenza. So it's just him being sick and we go from there.
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