Friday, December 17, 2010

Follow-up with the Neurosurgeon

Kenny saw the Neurosurgeon yesterday. He said that in reality there is actually more fluid on his brain than before, but it's obviously moving with the ETV proceedure that they did. But there may be more fluid too, because with such significant injury to the brain, it doesn't grow as a typical brain would. So his head growth has slowed...thank goodness. It's like a puppy growing into it's paws...Kenny is growing into his head! LOL! He had his RSV shot today. You know it's bad, when you go to Surrey Memorial, and the nurses remember you from when you brought a kid in 3 years ago for RSV shots!!! So we go back in 3 weeks, and then every 4 until the end of flu season! We are slowly getting ready for Christmas! I'm so ready for the break from appointments! If I were to write down an average week out for people, I think it'd make their head spin! LOL. Maybe I will in the new year!

Friday, December 10, 2010

Interesting informations!

I got a call from Bio-Chemical disease control for Kenny on Tuesday. They are now asking for blood work from Gary and I. If you look at the requistion, it shows that they are looking at 1p31.1, I assume a specific gene. What this means, I don't know. This waiting game sure makes me sit on egg shells. I didn't really care what or if they found anything when we began this with them. But now that there may be some sort of answer the curiosity is just killing me!!!

Kristen has been registered for Kindergarden!! WOW! My little CHERUB sure has come a long way! We also had mapping for her CI on Wednesday, so I was able to ask about how to go about and when to use the FM system with her. I do want it for her hearing aid side, but I'm not wanting to use it with her CI side. I was always under the impression that because it is a different was of listening, (different than hearing aid) that we need to allow her to hear as natural as possible. I did try the FM system and had found that it just confused her. Really, when she wears her CI, it's like she's hearing like you and I. Her brain has worked out the important information and knows what to listen for, well with voices anyways. I can be in a gym, and she can hear me call for her from half way across! So I wanted to see if she would be fine without the FM in school first, before we try it out. Well her audiologist stated that they have done more research on CI's with FM systems. Unless Kristen can tell me if there is interference then no. It also takes away alot of the background noise when it's on as well. They can't say how many decibles, but in a Kindergarden setting, she may miss out on peers conversations. They are also finding that the FM with the CI would be more useful in lecture type settings. Where it's all about information and direct note taking learning. I am pleased with these answers as this is how we use the implant anyways, like an aid, but like she's hearing when it is on. Don't get me wrong, I do know she's deaf, and with out it she can't hear a thing. So it is an aid, just not like a hearing aid. the hearing aid will have an FM coupled with it. And if we need the equipment the school is responsible for getting it for us. But until it's needed, it's best to allow them to hear like any other hearing child, just with an implant. And her brain has worked out what's important and what's not, so we're home free! Now to work on getting that darn bi-lateral!!!

Friday, November 26, 2010

It's strange

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!

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.

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!

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!

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.

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.

Sunday, September 19, 2010

Just because we love you.

The family has asked me to post this for them. In respect for them please let's just give them space in their grieving and just continue to pray for their healing and strength.



"Please no questions at this point in time. My heart is broken beyond repair right now. Our twin baby boys have earned their angel wings and the only comfort I have is that I could hold them as they went peacefully away. I will love them both until my dieing day...come what may."

I am so broken for them. I just really don't know what to do or say. I just wish beyond anything that I could take the pain away. Please continue to pray for thier family.

Thursday, September 16, 2010

A devastating decision.

I don't even know what to write. I feel so bad for my friend and her husband. I just ask for prayers.

Tuesday, September 14, 2010

Please continue to pray

Please continue to pray for my friends strength. The news from the hospital was still not good. The babies would not survive birth. They have to make a heart wrenching decision. I just ask for all prayers to embrace them with love and strength.

This is very hard for me. I don't want her to hurt, and just wish I could take it away from her and her husband. I wish that in times like this I could say that everything happens for a reason. Because in times like this I don't truely believe it. I get very angry and frustrated. I just hope that their pain doesn't last long. I know that's not going to happen, but I do have that hope.

Monday, September 13, 2010

Please just pray

My friend has not gotten good news from the Dr's about her situation. She doesn't want to talk to anyone right now. I'd just like to ask for prayers. My heart aches for them, and I wish that I could put a box around them to protect them from all of this hurt.

Saturday, September 11, 2010

Some things are just SO unfair!

I had my best friend over today. She is 20 weeks pregnant. I have known her for the last 10 years, we worked together when she was in high school (that's how we met), we had a baby 5 months apart, I was in her wedding party (along with all of my kids...imagine that...lol), and now going through this second pregnancy with her!

She had an ultrasound last weekend for gender determination. I joined her for that for our girls weekend away. We found out the gender together. Daddy doesn't want to know, so I won't divolge the information. The tech asked her if she could be off on her dates. She hadn't had a diagnostic U/S yet. The tech also said that she had lots of fluid. We as CDH parents know that when there is extra fluid that there is a chance that there can be something wrong. We went upon our day.

Well yesterday she went for her diagnostic U/S. She said that it took forever because baby wouldn't sit still. They got their pictures, and went home on their way.

Today she is visiting and gets a phone call from the dr's office. They need to see her immediatly! My heart sank! I think that he's did too. She's been there throughout all four of my pregnancies.

I told Gary that I was going with her. He said fine! Even with leaving him with five kids under six! He handled it amazingly!

We walked in. And sat. and sat. and sat....cause we all know Dr's office's. The Dr came in and said..."it's not good news". My heart dropped. I myself have heard those words, and know exactly how she's feeling. The baby is actually twins...conjoined...at the chest...one heart....not looking like a healthy heart. But really, this is a smaller hospital with older equipment. She is being refered to Women's hospital immediatly for a level two U/S. The dr also said that he feels that she needs to be prepared to make a decision. And the impression that I get is that it is of that to terminate.

I am soooo angry!! How can this be happening to my best friend! She and no one should have to EVER be told to make a decision.

I just really hope that I will know how to support this family through this in a positive way. I just pray that Women's will be able to give her HOPE!

I will update as she gets news. Please pray for her, her husband, her 2 year old little boy, and her unborn babies.

Tuesday, September 7, 2010

Back to School

Joe's first day of Grade 1!!!

Wow! I just remember holding this little being in my arms being amazed at the miracle of life, and knowing that I incubated this little boy. Well this little boy is now 6 years old, and over 50 lbs! That's huge from the tiny 5 lbs 11oz at birth! If there was only a way that they could know how much we loved them then, and how much more we love them now.

Kristen's first day of her second year of Pre-school!!!

She walked in there like she owned the place! Well she's only been going in there for the last 4 years! (to drop Joe off before he started school). It was no big deal to her. But to look back at the memory of her lying so helpless when she was born. And to see a machine breathing for her, knowing that the machine wasn't enough to help her body. Her lungs just needed a break! And to see her on ECMO. To have the phone call, "there is shadowing in her brain" and not knowing if they had to take her off immediatley or not. They didn't it was an old injury, probably from birth, but who really knows. To watch her FINALLY breathe on her own at 2 mths old, to take her home at 3 months old...well it was my birthday really! And now to try and slow her down today! She will never know what a miracle she is to us!

Courtney, waiting for her first day of school....well it's next year!!

Courtney is sooooo excited for school, she just doesn't really realize that she doesn't go this year yet! Poor kid. She was my biggest little one of all at 7 lbs 4 oz! The only baby that we got to hold right away before they took her to the Special Care Nursery. What a joy that was for us...so...normal! Whatever that is. Now to try and get the kid to stop asking to 'eat'!!! lol!! You'd think that I never fed her the way that she always want to snack!

Kenny, well, he just went with the flow today!

Such a tiny little guy only just over a year ago. Little did we realize what the last year would have brought to us with him! He's finally starting to be able to just be a baby...maybe a year too late, but better to be late than never! He just looks up at you with these BIG blue eyes, just filled with love. Knowing how much we love him!

What am I going to do when they graduate!?

Friday, September 3, 2010

Kimba!

Kenny has his new stroller! It's a Kimba stroller with great support for his head and trunk! It's such a smooth ride too! I love strollers. This one though, you can't miss that he is a special needs kid. That suck's, but in reality, it's the truth. And I can now apply for prime parking! Yep, I applied for handicap parking. That will make things easier. I usually park a mile away so people don't park next to me. It's too hard to get all the kids in when people park 3 inches from my doors!

And with handicap parking came the discussion of wheel chair accessable vehicle. A regular minivan with the adjustments won't work for our family. We are a family of SIX! So what does that leave me??!! Well as far as I can figure...a Dodge Sprinter. Yee Haw!!! I could pack that thing full....lol.

GERD!! Really!

I took all three older kids to the dentist this week. Kristen has the most awful looking teeth. And she's such a smiley child too! They are crooked and yellowed. Apparently from med's and stuff from her first couple of months in the ICU. I have been given heck for not brushing properly, not doing it enough, well and it goes on. I know that the dentist does my other kids too, so wouldn't you see from the other two that I DO brush the teeth?! Anyways, I took her in this week. I knew that we were doing a bunch of 'scaling' and we would be strapping her down to a backboard to keep her still. And to be safer to everyone involved. So we strap her down. We do the scaling, she does the screaming!And does she ever SCREAM!! Of course, she hates Dr's! Well afterwards the dentist looks at me and askes "reflux, GERD??" And I said yes for the first two years of her life she was on meds for it...common for CDH kids! Well the acid has eatten all of the enamal off of her teeth! I'm so confused as to how it takes 3 years for the dentist to come to this conclusion! She's seen Kristen from 18 mths old, when I noticed the discoloured teeth coming in! She is going to refer us to a specialist to get caps put on some of her teeth! Poor kid! And then we get home, and I look at her hands, and well because she fought the restraints so bad, she has rubbed the skin off of her knuckles and hands! Geeze what to do next time??!! Gloves?? Long sleeved shirt??

Saturday, August 28, 2010

So Joe rides on!

Joe did it! he rode his two wheeler! Well it wasn't exactly willingly...lmao! He screamed the whole entire time! It was so cute, but funny as heck as well! He was just way to afraid to fall, so he just had to balance...lol.

Next time maybe he won't be so afraid.

All of the kids are doing good. I have gotten back from my 12 days of camping excersion. It was great to go away, and not have to be house bound in the heat. The pool was wonderful, and the kids loved it too.

I wish that I had been more on the ball with remembering to take photo's though. i'm terrible lately!

Kenny turned one! We are going to do a small party for him in Sept. when everything settles down. he is just growing up so quickly. He's finally starting to gain weight appropriately. And his development is still at just over a 3 mth old. I will be able to spend a lot of one to one with him come the middle of Sept. when Kristen starts her PALS program at the BC Family Hearing Center. Courtney has been given permission to attend too. She'll be a great model for speech and language for all of the other kids. And let me tell you...she talks, and talks, and talks some more! And Joe too....he's a running comentary of everything! And people think that I talk alot...lol! It will be good for Courtney to go though. She doesn't start pre-school until the next year, but because she has been around so much therapy for the other's she's sooooo ready...and so am I!!! lol! We are about a week and a half til school starts. I will be back to PAC (PTA equivalant for my US friends), and hopefully I can drum up some more business for my Tupperware venture! I'm loving selling that too now! hmmmm, is there anything else that I can add to my to do list??!! Maybe slow down...maybe when I retire...maybe not!

Tuesday, August 17, 2010

Camping, Camping and more Camping

Well, Kenny has been doing amazing! He is a different child. He no longer screams all of the time. I can even drive and he's just looking around. Not closing his eyes and screaming! I would have to say at this point that the surgery is a success. We'll see what the neurosurgeon says when we have a follow up though.

So camping. Well we have been really taking advantage of the tent trailer! We went to Chilliwack lake to a friends cabin for 4 days, while we were away had our interior painted of the house. Came home for 3 days, and I took the kids to Ferndale! For a week! I've had a couple of friends come down with their kids and stay with me for a couple of days. So that has been nice. They wanted to do the cross border shopping! Well so do I...lol! So shopping, and swimming, and shopping and swimming! Gary is at home doing things around the house, so yes, I took 4 kids by myself camping! Believe it or not, it's not all that bad! They have been having such a good time!

So then we go home, and leave the next day for 3 more days of camping! Bridal Falls is having Halloween in August! So the kids get to go trick-or-treating! Gonna be so much fun! But really, I think after this, I may need to just sleep for a week!

Thursday, July 29, 2010

The summer is half way through!

We have been keeping ourselves soooo busy! Kenny has now healed from his surgery although he sprung a leak last week. He's been 'dry' now for a full week. I have noticed such a difference with his behaviour now that the pressure is down. I just hope and pray that it stays this way. The older three...well they keep me on my toes...lol. We have been doing lots of camping, and chillin' in the house with the A/C going! All of this through our appintments as well. I'm starting to want the regular routine of school back now, but I know it will come way too quickly. so I do enjoy the lack of structure right now.

I've been selling my Tupperware, and really enjoying that right now as well too! It's my ladies night out, and adult time. We are getting ready for a garage sale this weekend. We're going through everything, so that we can have the majority of the inside of the house painted on our next camping trip. It's like moving!! LOL...but a good opportunity to re-vamp our needs/and don't needs.

Friday, July 16, 2010

Can't believe the change

I really can't believe the change that Kenny has gone through since his surgery a week ago. After 3 day's he was back to being able to hold his head up the way that he was before. It's never been in full control, but hey!

He also had a follow-up EEG on Tues. It showed the seizure tendancies still, but undercontrol. Thank goodness! First time that I've been to Children's with him, and left with Ok news!

So now to wait and see that he continue's on the track that he is on.

Sunday, July 11, 2010

Surgery finished

Hopefully this will be the only intervention that we will have to do for Kenny with his hydrocephalus. They did perform the ETV proceedure on Friday afternoon. He went through the surgery just fine. Recovery was just fine. The leak that he sprung...not so cool. I noticed once we were on the ward in our room that there was fluid seeping out of his wound. They said that it was the spray anteseptic that they put on. I wasn't convinced. I mentioned it to the nurse, do they see this often. Yes they see it sometimes. Ok, sure. So I put him to sleep, and two hours later, I woke him up to feed him. Well his whole head had a puddle under it. I buzzed the nurse, turns out my buzzer was broken, but she happened to be right there. And I said I think that he's sprung a leak. Needless to say, 2 hours later he was back in the OR, just because of the lights and sterile environment, and they re-stitched his incision. If it didn't stop leaking, we would be left no choice but a shunt. Now that was risky because they found a new bleed in the front of his brain, and they can't shunt safely with those condtions.

So back he came to the room. No leaks. The next morning, oh geeze, I noticed a bit of wet on his bandaid. Small leak. More observations. It did stop and they did let us go at about 1:30pm. So now, today, being Sunday, two days after surgery. He is so much more awake, so much happier, he's moving more, he's happy in his carseat!!! now we just pray that this works and the fluid will no longer be an issue. Of course I'm paranoid of infection, and more leakage, and just him being ok. But I guess that will stop when, well I will never stop worrying for any of my kids!

Wednesday, July 7, 2010

What do they do?

The Neurosurgeon is stumped. He said that he's not too sure what to do. So we hoe'd and hummed over do we shunt, do we wait, do we ETV, do we VP shunt. There is a new found issue now though. There is a small hemorage at the front of his brain. Now if we shunt, this could potentially make is worse. Is the bleed from the higher pressures. Probably. Oh dear, just what to do for this poor child. It was decided that we do need to interveen. So we will try the ETV and see what happens. So then he proceeds to tell me to come in on Friday. Ok no problem. Then he says, go to the ER and tell them that you need to see me! I'm like Ok, i can look like a weirdo. But I guess it's the only way to have an OR ready and available.

So Friday we go!

Sunday, June 20, 2010

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, June 18, 2010

Animalinyou.com

I had to laugh at how true this is...lol

My reading!

Hippopotamus personalities are easy to identify. Of impressive physical bulk, they invariably attempt to disguise their size and ponderous movements. Wallowing in loose-fitting clothes or large tent dresses, their uncomfortable dimensions are the result of a compulsive eating habit. This massive bulk triggers an overwhelming hunger, and a hippo's life is centered around food and its preparation.

Most hippos never really accept themselves for who they are. Traditionally viewed as jolly fat people, they have tried every diet on the market. The hippo's heart is a cauldron of powerfully conflicting feelings and the average hippo loves to wallow in this emotional stew. It's not that a hippo gets angry more often than others, it's just that its emotion tends to be magnified to an outrageous degree. In fact, the wild variety of hippo kills more people than any other predator in Africa, including the malevolent crocodile.

Hippos carry around a great deal of unrequited anger from hurtful experiences in their youth, and although they're generally peaceful they can be aggressive when provoked. Consequently, others avoid them, further adding to their sense of alienation.

Despite this occasionally destructive behavior, there is no bigger heart beating in the animal kingdom. Hippos are loving, warm, creatures who are concerned with the emotional well-being of everyone they know.

Food acts as a salve for hippos' loneliness and alienation, and with their intimate knowledge of it they are excellent chefs and food critics. Extraordinarily fond of children they often volunteer for baby-sitting duties, finding solace in the unjudgmental nature of youth. Hippos are the first to bake cookies for the local school.

For some reason the IRS hires hippo personalities in large numbers - probably because of their aggressive and intimidating demeanor when agitated. Like the elephant personality, a hippo has a wonderfully rich voice. The deep resonance produced by their bulk, together with their desire to hide from society, makes them perfect for the role of a phone receptionist, operator, or even a phone sex actor.

The MRI is next week

We met with neonatology follow up clinic on Wednesday for Kenny. They pretty much follow his development along the way and get you connected to anyone you may need to be connected to for support. We have a lot of support in place for Kenny already. And for the standard's in BC, we have it early as well! Our OT and PT usually don't get the kids until they are closer to ONE!!! This is just due to wait lists! So we are lucky that Kristen has paved a smooth road of knowledge for me to know how to be really squeeky to get everything going so early. We have also visited with Bio-chemical Disease Control a few weeks back. They have done blood work, and are checking for anything metabolic for him. If they don't find anything there, they will also check details of his DNA. At that appointment the DR. mentioned something about his nose. All my kids have that nose. My friend when he was born mentioned his nose and how all of the kids have the same nose. Was that forshowdowing for the here and now??!! So the dr mentioned the nose. Well on Wednesday, the neonatologist, yep she mentioned the nose too! She also said that he has different ear canals too. A couple of features that may lead her to believe that there is a storage disorder. But his liver and spleen aren't swollen too. So in checking storage disorder's, it can affect the spleen, liver, and the brain! It's the blood not able to get rid of the lipids and just storing it! So I told them that he has an MRI next week so if there is any other searching that they want to do, to do it at the same time. They were pleased to hear this. Maybe they will find something?! Who know's.
So in checking his ear's they also found that there is still fluid behind his eardrums. So off to audiology we go. We were headed there anyways, just to follow-up with hearing. Not that I'm worried. We already deal with hearing loss here, so this is something that isn't new to us. Yep, the tymp's showed no movement of the eardrum, and off to the ENT!!! my day just kept getting longer and longer!! The ENT saw the fluid, so again I said can we put the tubes in his ears when he is under for the MRI. That seemed reasonable, as long as radiology didn't have a problem with it. So now till next week, and then to wait for phone calls and see!

Thursday, June 10, 2010

Follow-up visits

Kristen got to have a follow-up visit with her surgeon who did her repair surgery today. And he is so pleased that we don't need to see him for another year! He said because he CDH is right handed that the liver can sometimes really help to keep the patch and stuff in place. Now I know he mean's well, but I have heard of it still happening. But to know that we have passed the first three years without any problems, we are so lucky and blessed.

We also had a follow up with Kenny's neurosurgeon, and a head ultrasound. So the verdict is in. We will be doing something about it. His ventricles in his brain are still dialating and getting bigger, so we must operate. I'm not too happy about it, but I do know that it's the best thing for my little guy. I just really wish that he could truley get a break though! So we wait for the MRI and then we go from there. My guess is that in the next month we will have the surgery done.

I think that because of all that has happened with my kids that I have really become so hard, and cold to everything. I wanted to cry, but couldn't! I do know that it's beyond my control and I think that maybe that's why?! i don't know....but here we go again, the rollercoaster of life!

Wednesday, June 9, 2010

Does one take it personnaly??

With the socialization of Facebook, Twitter, and Blogging and of course everything between how do we take things that people do or say. It's so hard because we have closed the size of the world to a computer screen. We are meeting people all over the world that have the same/similar issues as we do with our kids. We are there to support each other in so many ways!
Now here's my situation. I have followed a blog for a while now...I do believe close to two years. I found this family on Facebook so that we could chat at a deeper level. This child was born with CDH just like Kristen was. I really enjoyed the correspondance that went back and forth between us! The ECMO, the coming home, the feeding issues, the growth etc. For some reason today I somehow realized that I hadn't seen any of the status updates from this person in awhile. So I searched them out. and sure enough, we are no longer 'friends'. I have no idea why, but that's fine. I understand as I like to 'prune' my friends list all of the time! I don't need 500 friends that I only keep on there to have 500 friends. Especially when I send a "how are you" message and hear nothing back. I don't have the time for that. So anyways, I went to check their blog, and for some reason they have changed that too, and now I cannot access there as well. Usually, I don't care. But I really felt a connection with this family. Now, please note, due to demographic's, I would probably NEVER actually meet them face to face. So how does one take this now in today's 'Facebook' way of socializing? I know realistically that I shouldn't be offended, but should I?
I am happy with the contact's and friends that I have now, but should someone let me know why they are removing me??....realistically I don't tell people when I remove them from my page either...so who knows?

Sunday, June 6, 2010

Why is it so hard for me to keep up on updating?

I haven't quite figured out why it's so hard for me to keep up on updating this blog anymore. There are so many times I mean to do it, but I end up getting side tracked and forgetting!!! Anyways, here's the latest...I had an appointment with Bio-chemical Disease control for Kenny. Now I have had to yet be in this portion of the hospital. so this was new to me. So they took a full history of our family, essencially like a genetic counselor. They even wanted to know about any issues that the first cousin's may have had. They did an exam of Kenny, and sent him for blood work and urine. Now what they're saying is that there 'could' be a potential for a metabolic issue with him. What does this mean? Well it could be nothing, it could be an untreatable metabolic disorder, or it could be a treatable disorder! Now I don't want to get my hopes up too high that it's the last option. We have accepted who Kenny is and don't want to have to grieve the fact of who he will be in the future again! But it was very interesting! I think that the issue was the fact that his cysts on his brain are actually symetrical. Which for a brain injury is strange. But we will wait and see...well actually we will wait quite awhile...lol...3-4 months!!! Oh well, only in the name of medicine and the fact that there could be something else wrong with him!

Thursday, May 27, 2010

So naughty of me!

I am so bad at updating lately! I have to apologize! We've just been so busy around here. Things are going great for all of the kids though. Kristen is an imataion machine lately! It's so cute to see her even having so much spontanous language! She was sitting at the dinner table and we're all chatting. I look over at Kristen and she's pointing at a cup and signing red! And it was red that she was pointing to!! And then she signed and said "boo" for the blue as she pointed to that as well! I am so proud of her! She is coming so far! You tell her to say thank-you and she'll sign it! I can now say to her "I love you" and she will say "wub ooo"!!! It just melts my heart! And she is so proud!

Kenny has officially cut his first tooth! I forgot what it's like to have a boy teeth! Oh my...so whiney!!! And it didn't help that we went camping last weekend and he was outta sorts there and teething! Poor kid! We also got approved for the At Home Program for him! What does this mean??!! This means that we get coverage for alot of equipment needs, feeding needs, toileting needs, therapy needs! Such a blessing!

Courtney's new word...well she just has so many! So very neat for us to watch a 'typically' developing child! I wish we could slow her down. She's just growing up soooo quickly! I take her to a play group at the BC Family hearing center, where Kristen recieves services and she has friends that go there as well, any ways.... She can label everyone's juice cup and know's who they belong to! I just beam inside to see her thriving!

Joe....oh my Joe! He is such a little gentleman! He's so caring and compasionate! I can't believe that he's going to be done Kindergarden soon! How can we keep them little in our arms? I look just rediculas carrying him now!...lmao! I'm 5' 2" and he's 3/4 my height now!! LOL. It just look's plain ol' silly!

Sunday, May 9, 2010

Mother's Day

33 years ago today, my mom gave me life. I have now turned and created four more. It is the most amazing gift in the world. i wouldn't give it up for anything. Even with the trial's and tribulations of everything that we go through. My children make it all worth while. Thank you mom. I love you!

Thursday, April 29, 2010

The follow-up U/S

So the neurosurgeon looked at Kenny's U/S today, and feels that it looks stable for now. So now we go back for a follow-up appointment in about 6 weeks. They told me that because of the PVL that sometimes these kids have dialated ventricles which you don't see in normal people, but that could be their norm. If I notice anything though I call and tell them, and they will see him right away! So I think that this is the first time I have actually left Children's hospital with not so bad news in regards to Kenny.

On another note, Kristen! WOW!! That's all I can say! She is mimicking all speech! I have waited sooooo long for that! She even know's her own name now! It's just been so exciting to see her thrive so much now.

Wednesday, April 14, 2010

Just cause they're so cute











I just thought i'd post some updated pic's of the kids.

Thursday, April 8, 2010

Finally, not bad news

We had our follow-up EEG for Kenny today to see if the anti-seizure medication is working or not. The neurologist was please with the effects. He wasn't seizuring nearly like he was. And developmentaly he's a different child. So the plan...keep doing what we're doing! No injectable steroid! YAY!

Then we were sent up to neurosurgery. They were reviewing the films of his head ultrasound two weeks ago. Kenny has a big head, and the ventricles in his brain look like they may be dialating. The thought...it may be the PVL and his brain not growing 'normally' so it's replacing the empty space with fluid, or it could be hyrdrocephalus. So the plan, wait three weeks and repeat the U/S. I just have to hope and pray that there are no changes between now and then and that it's not something that we have to VP shunt.

Joe had a performance today with his Kindergarden class. He had his first school bus ride to the Performaning place and got to do a dance with his class. I was very sad that I had to miss this, but Daddy went to watch. I will get to see it at an assembly later this month. So I'm not too disappointed, well I am, but oh well. I know that there is going to be many days where I have to make these decisions and can't make it to everything!

Thursday, April 1, 2010

Joe's so cute!

So whenever we ask Courtney "who did it?" She say's "Joe did it!" Joe has started to notice that we ask her this just to giggle at her because it's way too funny that she always says it. So yesterday we're at the table eating lunch and Joe look's over at Court, and says "Court....Who did it??" She looked at him and didn't know what to say!

Today he came home with a little easter basket that he made at school with a couple of hershey's kisses in it. He proceeded to take one kiss out and gave it to Courtney and said "this is for Court" and then handed one to Kristen and said "this is for Kristen" It was just so precious!

April fools day!

I'd like to start by letting my husband know a very happy birthday to you today. We had a great birthday dinner of Burger King and whopper's...lol.

On another note, the Dr's office called today to let me know the head ultrasound results were back for Kenny. I always know when a Dr call's you at home it's NEVER good news. And of coure, again not good news. Both of Kenny's ventricles in his brain are a bit dialated compared to his last head ultrasound. What does this mean. Well it could be a sign of hydrocephlas. This means that his brain isn't draining the spinal fluid off properly and it's potentially causing pressure on his brain. If it's not monitored or followed closely, there can be deadly reproctions. How do the fix it, well they put in a VP shunt. An artificial valve that helps to drain the fluid down a tube that ends in the abdomen. The fluid is then just absorbed by the body. I wish that there wasn't so much bad news with Kenny, and we could just enjoy the baby stage.

On a really happy note, his med's have been making him not spasam as much, and we actually have a happy Kenny over here! We can put him down on the floor and he's actually happy!! It's quite amazing! It's like we have a happy 3 month old baby on our hands. So that's great! He's even seeing better lately! It's been so great to smile at him and have him smile back! And for him to be cooing and gooing!! I pray that the dialated ventricles heal, and begin to work properly. I pray that I don't have to go to the next type of medication for his infantile spasams (it's injectable). I pray that he continues to be on the developmental up swing that he's on right now. i pray that I can really enjoy him as a baby!

Monday, March 22, 2010

A parent shared this link, so I shared it with you

A friend that I have that wears hearing aids shared this link. I felt that it was something that would really enlighten everyone on what a hearing loss can sound like. Kristen has a cochlear implant so with that one ear, her right, she hears at a mild hearing loss. With her left ear she wears a hearing aid, and with the hearing aid it brings her up to a moderate loss. She benifits too much with the hearing aid for me to be able to have the left ear implanted, although I'd like too, so we wait until she can tell us what she hears with it. So here's the link, you should check it out. I may help to bring the hearing world into a hearing impaired/deaf world.

http://www.betterhearing.org/sound/

Friday, March 19, 2010

A whole new baby

We started Kenny's med's last nite. And I cannot believe that he's a different baby ALREADY!!! Like I don't mean that the spasams have stopped, although I haven't seen any already, but he's HAPPY!! Like a NORMAL baby! It's almost creepy...lol. The Screamer is a Laugher...lol. They did say that sometimes you can start to see results from the med's as soon as 24 hours after first doseing...well, maybe it's my imagination, but I'll take it..:)

Wednesday, March 17, 2010

The Results are in

Kenny has Infantile Spasams. They are essencially seizures. The poor kid. I'm just kind of numb right now with everything and just going day to day. Why is it that everything keeps hitting this house??!!

Tuesday, March 16, 2010

The neorolgist....

they want to see us tomorrow morning at 8am. As a parent of a sick kid at one point, I am fully aware when a dr want's to see you asap, or they call you at home, it's not a good thing. Or it is because the intervention needs to be immediate. So my feeling is that Kenny is having some form of seizure activity and we need to address this immediatly. But of course I'll know more tomorrow!

Whew!

I feel like this spring break hasn't been much of a break! Well it has been, but I've been busy with appointments now for Kenny! Yesterday was his EEG...so now we wait to see if ther are any seizure activity's going on. Today was his assessment for the At Home Program to see if he's eligible. So again, now we wait and see. Thurs we have OT and PT for him, as well as his six month shot's and Kristen's Kindergarden shots! Poor kids...lol. And next week Kenny's head U/S! WOW can it be more jam packed. This is all extra ontop of everything else that goes on around here. just when you thought that there was no more hours in the day....we found some!!

It's been a good almost 4 years since our house has just been ours. when you have children with higher needs, your door becomes wide open. You no longer have the same solitude to go home too, because they come to it! We've had PT, OT, SLP, IDP, ABA, heck, I've even had pediatritions grace their presence here at one point or another. When will my home become mine again....I'm not sure. I'm used to it now....the neighbor's must wonder some days what the heck goes on overhere...lol!

Wednesday, March 10, 2010

Busy Busy Busy

It's Spring Break around here, and it never ceases to amaze me that we're still soooo busy! There are just appointments being thrown around left right and center! I don't think that I'd know what to do with myself if I didn't have something going on. I wonder if I will?? You know, stop to smell the roses. My kids are growing up so quickly right before my eyes. I feel like it's a race track and I can't keep up and I may miss something. Joe is just doing some AMAZING things. He's so loving towards his sister's and just loves to please. Kristen is just a spit fire! She looks at you with these eyes, like did I do that??!!...lol. Courtney, well that little one is NOT letting the older two get away on her...lol. She's just keeping up to them as much as her two year old little body can! Kenny....he's not so much a screamer anymore...well he still screams, but we can get him to smile and do HIS giggle! We feel like he's slowly seeing more and more. And then I turn around and do it all again!! I must say....I am so blessed to have such wonderful kids....even through my stress and frustration!

Wednesday, March 3, 2010

I am so proud




I went to the school today to see what Joe's kindergarden class is going to be performing. I was so proud I cried. He has come so far! I can't wait to see him when they do the whole performance at Bell performing arts center.

Tuesday, March 2, 2010

At least he's seeing something

We had the appointment with the Visual Impairment Clinic yesterday. They put Kenny WAY below the chart for sight....but having said that he is seeing something. There is hope at this point that he will makes gains as to what he see's. We just need to give him the opportunities for his brain to see things. So in doing that I have printed off the contrasty types of things that babies thrive on looking at. I'm just happy that I didn't hear that he's seeing NOTHING. I think that after last week that would have really put me over the edge. His sight is at .25 of what the chart that they use, and I can't remember what normal sight for his age was...I do believe that it was around +1....but I could be wrong on that. The dr was so helpful, and supportive and even wants to take a look at Kristen. Just to see how she's doing with her sight. She has a similar injury in her visual portion of her brain as well. She has a Nysagmus as well...and if he can 'classify' her as visually impaired it will just put her at a higher rating in the school system along with her hearing loss. I have come to a big head in the road and journey....these words (diagnosis') are just that, words. I've always known that and said it, but I think that there has become a bigger acceptance on my part that it doesn't define WHO my children are. People constantly say how strong i am, and how great I handle it...but inside I do cry and hurt. But then I look over at the screaming children beside me yelling at eachother, and know it's normal...lol. We have great supports in place and people that truly understand, or take a real hard attempt at trying to understand. And they love all of my kids unconditionally. I think that I'm rambling now...lol...and I'm not sure if this all makes sense, but it's off my brain, and I can now focus on other things.

Wednesday, February 24, 2010

The Dr has said the word

CP! Yep, Cerebral Palsy. I knew that it was coming. It's harder to actually hear it though. Kenny is showing definate signs that is leading the Neonatologist in the direction that she feels that she can say that he has it. The reports that will be sent out will say that he has it. This will help to speed up the referal process' due to now having more of a diagonis. It still hurts. I am optimistic, but real. No mother wants to EVER hear that something that is wrong with her child. I guess that I'm becoming numb to it because it seems that all of my kids have "something" wrong with them...minus Courtney...so far that is. Who know's, maybe she'll be my ADD child just so I can say "oh ya, one of my kids has that". I guess I fear that sometimes people will think that I'm joking when I say "ya one of my kids has this and the other has that" That people may think that it's an attention thing, or an out right lie! It's not, and I know that, and that's all that matter's to me right now. As far as to what degree of CP that Kenny will exibit is all relitive to each individual child. And how they learn and how they are intervened. No one will be able to say, he won't walk, or crawl, or move his hands in functional manner's until he's a bit older. It truely makes it hard to enjoy the baby stage because you want them to grow up so quickly so you can see what the challenge will equate to! It is a diagnosis. It doesn't change who Kenny was this morning to this afternoon after the "label" was given. He's still my baby. I love him with all of my heart. I will shed tears for him and what he has to work through. I may have to just be strong for now until he's older, and then I can be weak then when he's independant. I am greatful that I have my children. All of them. I would NEVER trade them in for anyone else's child or anything in the world. I would never have done anything differently. I pray that his Visual Impairment appointment goes well on Monday. I'm really at this point not too optimistic. I think that I'm preparing myself for the worst with that. I don't know why, I think that I just feel that way in my heart. I just think that this household has been given almost every challenge out there that needs to be. We have great friends around us that are sooo supportive. We have great early intervetionists that have been great to throw things our way to support all of my kids. We have great family member's that are always there for us! Without these people and their kind thought's, words, and prayer's we wouldn't be as strong as we are. All of these people have loving hand's helping in the success of my children. They are all truley blessings and I can never EVER repay them the appreciation that they deserve...well I could if I won the lottery...lol!

Sunday, February 21, 2010

And the Eye Dr says...

I took Kenny to the eye dr on Thursday and he has decided that it would be a good idea for Kenny to be seen by the Visual Impairment portions of Children's Hospital. I'm not too sure on how I feel about this right now. I'm glad that he's going to be followed closely incase anything does arise. The unfortunate thing is is that there is nothing that we can do at this point but wait. There is a chance that his brain can compensate the brain damage and work out. Well Kristen's did. She still has some depth perception issues and a nystagmus. But she is able to function just fine now. So we just wait with Kenny. We feel that he is seeing something. Mostly just the TV...lol. He likes hockey, but it's probably just the light that he likes. Although there are times at a distance that you can get him to smile at you after you've smiled at him!

Wednesday, February 17, 2010

Another thing that I borrowed and wanted to share with everyone

Some Mothers Get Babies With Something More
By: Lori Borgman, Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.


Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes, satin skin and straight feet. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome, a palette that didn't close or a tiny crooked foot or two. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Every body will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Monday, February 15, 2010

The over 30 crowd...borrowed this and had to share!

THE SPOILED UNDER-30 CROWD!!!
If you are 30 or older you will think this is hilarious!!!!

When I was a kid, adults used to bore me to tears with their tedious diatribes about how hard things were. When they were growing up; what with walking twenty-five miles to school every morning.... Uphill.... barefoot... BOTH ways Yadda, yadda, yadda




And I remember promising myself that when I grew up, there was no way in hell I was going to lay a bunch of crap like that on my kids about how hard I had itand how easy they've got it!

But now that.... I'm over the ripe old age of thirty, I can't help but look around and notice the youth of today.

You've got it so easy! I mean, compared to my childhood, you live in a damn Utopia!

And I hate to say it, but you kids today, you don't know how good you've got it!

I mean, when I was a kid we didn't have the Internet. If we wanted to know something, we had to go to the damn library and look it up ourselves, in the card catalogue!!

There was no email!! We had to actually write somebody a letter - with a pen!

Then you had to walk all the way across the street and put it in the mailbox and it would take, like, a week to get there! Stamps were 10 cents!


Child Protective Services didn't care if our parents beat us. As a matter of fact, the parents of all my friends also had permission to kick our ass! Nowhere was safe!

There were no MP3' s or Napsters! If you wanted to steal music, you had to hitchhike to the damn record store and shoplift it yourself!

Or you had to wait around all day to tape it off the radio and the DJ would usually talk over the beginning and @#*% it all up! There were no CD players! We had tape decks in our car. We'd play our favorite tape and "eject" it when finished and the tape would come undone. Cause - that's how we rolled, dig?

We didn't have fancy crap like Call Waiting! If you were on the phone and somebody else called they got a busy signal, that's
it!

And we didn't have fancy Caller ID either!
When the phone rang, you had no idea who it was! It could be your school, your mom, your boss, your bookie, your drug dealer, a collections agent, you just didn't know!!! You had to pick it up and take your chances!

We didn't have any fancy Sony Playstation video games with high-resolution 3-D graphics! We had the Atari 2600! With games like 'Space Invaders' and 'Asteroids'. Your guy was a little square! You actually had to use your imagination!! And there were no multiple levels or screens, it was just one screen.... forever!
And you could never win... The game just kept getting
harder and harder and faster and faster until you died! Just like LIFE!


You had to use a little book called a TV Guide to find out what was on! You were screwed when it came to channel surfing! You had to get off your ass and walk over to the TV to change the channel! NO REMOTES!!!

There was no Cartoon Network either! You could only get cartoons on Saturday Morning. Do you hear what I'm saying!?! We had to wait ALL WEEK for cartoons, you spoiled little rat-bastards!

And we didn't have microwaves, if we wanted to heat something up we had to use the stove! Imagine that!

That's exactly what I'm talking about! You kids today have got it too easy. You're spoiled. You guys wouldn't have lasted five minutes back in 1980 or before!

Regards,
The Over 30 Crowd

Saturday, February 13, 2010

Two Years Ago Today

Two years ago today a miracle was born into our home. Courtney Joy Taylor. She was our first and only baby that we got to hold right after birth like a normal baby. (the other three were either too early or too fragile) She spent 6 days in the hospital and came home to her siblings. For the first little while I called her the Pide Piper...lol...because she had this high pitched whine that just wouldn't stop!! She still has it...lol...just kidding. She is such a little turkey and loves to keep up with Joe and Kristen. She continues to amaze us as we have never experience a 'typically' developing child. We look at eachother sometimes and go..."is that what their supposed to do??!!" She has really shown us that she is the boss...lol. Happy Birthday Courtney! Mommy and Daddy love you so much!

Friday, February 12, 2010

She's Four Years Old Today

Four years ago a miracle was born into my life. Her name is Kristen Marie Taylor. She joined us quickly, but silently. We were so scared for what was to happen next. We didn't really truly take the severity of what was happening to reality. We never thought that she wouldn't make it, or maybe it's that we didn't believe that it could happen to us. Well she did survive and she's here with us today. Kristen is a CDH survivor. She is our little girl. She may have lost her hearing due to the ventilation, but she's here with us. She continues to amaze me everyday. She is a beautiful little girl today. My baby is growing up. I will post her link to the previous post that has all of her story from an earlier post last year. I encourage you to read it and spread the word of CDH. Bring awareness to what it is and how devestating it really can be to families. We are very blessed that Kristen health wise has no real lung issues that can really keep these kids sick.

http://bobdoble.blogspot.com/2009/04/kristens-run-with-cdh.html

I'd also like to share the following from the founder of CHERUBS who lost her CDH angel. It is so touching and really makes me feel apart of the CDH community! I have asked her if I could repost this from her blog and I did last year, I just felt that re-posting it would be a good thing for me.

No One Knows.... by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves. No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves. No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves. I know, because I have been there.
I didn't read it in a book or in someone else's story.
I didn't learn about this from an article or research abstract.
I don't pretend to understand things I never experienced.
I lived it all.
I cried it.
I survived it.
I woke up to every single day.
I slept with it on my mind every single night.
I was immersed in this world of CDH for 6 and a half years.
I still am.
CDH is more just a birth defect.
It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it. And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

Friday, January 29, 2010

Nothin' really going on around here

It's just been day to day as usual. Nothing new. I guess that that is a good thing too though...lol. I've been quite tired lately. I think that I should get my thyroid levels checked again. After I had Joe I ended up with hyperthyroidism so I did the radioiodine treatment and now i'm hypothyroid. Kinda suck's. Well, I've never felt like myself since then. My blood levels say that I can be fine, but the way that I feel never is. I gain weight so much easier now too. And have a heck of a time losing it. I also have ZERO energy. Well partially having four kids does that too...lol. I've been following a story in Alberta though and would like to share it with you.

http://www.facebook.com/groups.php?ref=sb#/group.php?gid=273439187168

This link has some of the more specific details, but all in all the hospital wants to take this little boy off of life support. As a parent who has had sick kids we all know how hard it is even with that. The family is fighting it, but I feel that they need our prayers and thoughts no matter what the final outcome is.

Wednesday, January 20, 2010

Greatest sound to a mother's ear





He did it! He did it! He laughed out loud when I tickled him! It was so cute, and amazing for us! We have been so worried about the big things going on with Kenny that we haven't really been enjoying the baby Kenny that he is. He laughed out loud, and it was so normal! I know what is normal, but it brought tears to my eyes. It was great! Here's some pic's of the kids doing what they do best! Being kids. You can see how Courtney has been liking to fall asleep...lol. Kenny in his great dud's. Kristen finally getting Courtney back...lol. And a great one of Joe and Daddy!

Tuesday, January 19, 2010

Kenny's Pediatrician Appointment

Kenny had his regular monthly Dr's appointment yesterday. Somethings made me feel better. I told him how I've come to the conclusion that he's going to be in a wheel chair and how I'm upset that neurology hasn't followed up with us etc. And so he has put in a request for an EEG, which I can't say is unreasonable. He said that he could be tightening his hands etc due to the reflux as well. He said his legs and stuff don't seem tight, so that really put me at ease. But of course time will still tell. His weight is now at 13lbs 6oz, so he's growing. He's 61cm longs, sorry I haven't converted that yet...lol. His reflux is still terrible, and we can't go up any more on his meds, but you would think with all of the past experience that I've had with reflux that I would have thickened it by now! Duh!! So I started that last nite, and he's not screaming as badly through his feeds anymore. So hopefully that will help. Now his eyes. Well we know he's not tracking things. We do know he's seeing something, just not too sure what. He likes to watch hockey, but what kid wouldn't??!! Big white screen with little dark figures going around. So we do see his eye dr next month so we'll get more answers then. We also have a neonatology follow-up clinic next month for his six month assessment. We'll get a real picture of where he's at then. I just hope that they don't say..."oh he's doing so well if you correct his age!!" But hey, that's the way the dr's roll. So now I think that my heart rate and blood pressure can drop for now back to a normal level...lol. For the moment anyways!

Saturday, January 16, 2010

We hit the money shots right now!

Yep, I can say it...Kristen now goes pee pee on the potty. I thought that I'd never see the day come! But it's here! I'm so happy...it's so normal! But really what is normal??!! Not my household by the general publics opinions...but it's my normal. Courtney sure is cute when she goes, she does the deaf clap and says 'yay' It's so cute and funny. She cheers for Kristen as well. Now I know that number two's may be an issue, but it'll come with time. I can officially say that in the day time, i only have one kid in diaper's!

Now on another note. I've been so absorbed and my mind has been so stuck on the outcome in the future for Kenny. I wish that I could just enjoy him as a baby, but I want him to grow up so that we know what we will be dealing with. I've added a couple of links if you'd like to read them. If you don't that's fine too. I just figure it's easier than explaining everything myself.

http://emedicine.medscape.com/article/975728-overview

The other thing that's now got my worries going is something called Infantile Spasms. Now I wouldn't have even known about them or what they looked like if it wasn't for another mom that I met on FB! Well, i'm not sure if Kenny is having them, but the movements sure look similar. I have an appointment with the Dr on Monday anyways so I can vent out on him then. i'm so frustrated! Everytime I go to the Pediatrician he asks if the neourologist has contacted me...and I keep saying no, should they have. And he just kind of looks at me. so this time, I'm going to let him know how I feel. The fact that I had to ask him for the MRI report even though I had left a message at BCCH for them to call me and fax me a copy of the report and NO ONE got back to me!

http://www.epilepsy.com/epilepsy/epilepsy_infantilespasms

I know how lucky that I am to have my kids with me. i just have trouble sometimes wracking my brain around how can these challenges happen to my kids. Why?? How come?? What are their futures going to look like?? I love them so much and there is so much inside of me with the unknown that scares me and breaks me up inside. Sorry, I just read the infantile spasms information last nite, and it just made me break down. Our brain is such a sensitive organ. And it can rewire itself, but sometimes there is just not enough for it rewire too. And I fear that Kenny may be that. He doesn't bring his hands to his mouth to play with them. He has no awareness of toys around him. He sometimes just looks right through you. We still don't know what he is or isn't seeing. Or if he will see. I know that he hears, because his demeanour sure changes when he hears me. And that means he needs to become my body wart and attach himself to me...lol! Again, I just wish that I could just be a mom, and be able to complain about normal things...like my kid always just wants my attention, or won't stop whining, or why can't he write his name yet he is 4 years old. My kids will always have to work so hard just to match their peers. It makes all of Courtney's developmental milestones seem so little, when they are still big.

Ok, I think that I've gotten some of my mind out again, so now maybe I can get a good nites sleep. It's hard when it's all in your brain and needs to come out. Whether someone is reading it or not.

Again, please know that I am so happy that I have my children with me, and i do appreciate the fact that I can hold them everyday. And trust me, I do. I make sure that I hold them tight.

Tuesday, January 12, 2010

Moving along

Things have been so hectic around here. Working on potty training. Yep the big P word...lol. I decided to do both girls at the same time. Kristen is going to be 4 next month and Courtney will be 2. So I figured that it would be a good example for Kristen to see Courtney working on it with her together. Court was basically just my bonus child. I didn't really think that she was ready, but figured hey why not. Well, the little one gets it! Yep Courtney is potty trained, well mommy is trained to run to the toilet every time the kid says potty pee or poo! But hey, it's not a diaper. Well and Kristen! well that's about it...she doesn't give one rat's behind about being wet, dirty, cold, or in pee! I even have cloth washable pull ups. Nope, doesn't care. we aren't giving up....but it's so frustrating! She talks about it, and smiles on the potty! Signs pee pee, says pee pee...I even went out and bought what I like to call the 'kid krapper'. It's a kid size toilet like the one's that we've all seen at the mall or where they have a lot of small kids. It's only 10 inches off of the ground and it's perfect. And since the girls share the master bedroom with the ensuite bathroom...we installed it for them. Yep, Kristen doesn't care! She will stand right there in the middle of the kitchen, lift a leg like a dog, and whiz on my floor....and then she cheers and claps. I think I'm at the point where I'm going to line my house with newspaper!!!

Thursday, January 7, 2010

I know I haven't posted in awhile

I know it's been awhile! We had a great Christmas holiday season, and a happy new year. I've been having trouble with my emotions and realizing that my little boy may end up not walking with his brother and sister's. I know that I have him with me, and I thank God for that everyday. Because after living through a child with CDH and following other families, I do know how quickly those lives can be changed and taken from you. My CDH baby is a survivor. Actually she will be 4 next month! But I did the thing that I should have done to begin with, I started googling "very extensive cysic periventricular leukomalacia" PLV for short. And well the stats show a 60-100% chance of some form of cerbral palsy. I'm fine with that, I guess...well really do I have a choice??!! I know that God only sends us special kids for special parents...I just didn't realize how much God must REALLY like me....lol. Sorry sometimes I have to laugh over my situation sometimes. I have to admit that there are times that I do wonder WHY??? Why will my 3 of my 4 kids have to work so much harder to achieve what other's can do with their eyes closed. Why will Courtney have to be that sibling that is going to possibly the snickers and giggles behind the other's back's at school. We all know how mean kids can be as they get older. Who know's what the future will hold. I will raise my children to be proud of who they are, not what they have.

I have people say all of the time how strong I am...really do I have a choice. I didn't choose all of this! It was given to me. These are my children. I love them with all of my heart. I have met wonderful people and families all VIA the internet who can relate to the specific challenges that I deal with daily. I think that one day after Kenny's in school....I may hide out for a year under a bridge and just watch the world go by...lol...just kidding. But I will probably have my mental break then. I can't be for myself right now. My kids need to have what I have set for them to happen to have them be successful in their own right.

I should be able to be JUST a mom, and not a Physio therapist, Occupational therapist, dietitian, Speech therapist, ABA therapist, and well the scheduling manager to make all of this actually happen at the same time. I feel like I'm a part of so many cliques that I would never want to invite anyone into...the CDH clique, the deaf and HOH clique, the autism clique, the brain injury clique, the global delayed clique. Don't get me wrong. The cliques that I'm a part of have the most wonderful families and children along with them. And I have had my ignorance to all of these different challenges put to shame, and now I am more educated. I actually don't know if I'm making and real sense at this exact moment and that's why it's taken me awhile to Blog...lol

But here, I'll leave you with all of the stats that I have accumulated over the last 5.5 years of my child rearing days thus far....

1 in 100 will miscarry from an amnio
50/50 chance of survival with CDH
5% chance of survival before Kristen went on ECMO
40% chance that Kristen wouldn't have survived ECMO
21% is the air oxygen saturation that we breathe
1 in 150 children will be diagnosed with Autism
4-6% chance that one of their siblings will too be diagnosed
60-100% chance that PVL will also carry CP
150cal per Kg Per day to have a baby grow and thrive and have good brain development
1 in 2500 lives births will have CDH
.4% chance of pregnancy after a tubal ligation
4-26% chance of PVL in premature infants before 32 weeks
100% chance that I love all of my perfect children with all of my heart and I will fight for them to the end to help to make them self confident caring adults!