Sunday, December 27, 2009

Christmas time at the Taylor's

We had such a great Christmas. It was so nice that all three of the older ones FINALLY got the idea of what the opening part of the gifts was. I know it sounds bad, but when your five year old only got the idea of presents when he was 4, these are the milestones that you wait for. Kristen thought that it was just amazing, and Courtney did the open dance for every was so cute. Joe wanted to help with everyone's gifts, so I let him help Kenny!

Sunday, December 20, 2009

Baby Briana Hayes

You know I've been having a bit of a hard time lately with Kenny's diagnosis. I have pretty much come to the conclusion that he's going to be wheel chair bound and blind. I'm Ok with this. It's not that I've given up hope that he'll be fine it's just that I want to feel like I'm being realistic. His brain injury is called Cystic Periventricular Leukomalacia. PVL for short. I found a FB group on it. And hopefully I can get support from those families. And in all of these feelings of the unknown, I do know how lucky I am to have him with me. All four of my kids for that matter. Another CDH baby has earned her Angel wings. Briana Hayes. I know how much these families would just love to have their children with them through out everything. It makes me then feel guilty for feeling the way that I do sometimes. Although in my mind I sometimes justify it that I'm allowed...but really am I??!! I know that I have been given the gifts of my children for a reason. I will always love them unconditonally. I just think that the unknown of the future scares me. I haven't had a worry like this one before. But in reality, these are MY PERFECT kids. Please continue to pray for all of the sick kids that we may or may not know.

Tuesday, December 15, 2009

A proud mommy!

Joe had his first school Christmas Concert tonite! It was so cute! I am so proud of him to get up in front of everyone and say his piece of the Christmas ABC's...
J is for Joy
the kind that you share
it makes people happy
to know that you care!

Sunday, December 13, 2009

And so she climbs

I went to go on a quick Christmas shopping adventure to the States with the boys, and while I was down there Gary called. "now don't panic, but which is the closest hospital" Oh geeze, what happened??!! Courtney had climbed up onto the stove VIA the oven door, and pulled a boiling pot of water on herself. The pot was on the back burner like it's supposed to be. It only takes a second! It's not Gary's fault, it's just something that happens so quickly with kids. She has second degree burns on her left wrist, and will be wrapped up for awhile. You wouldn't know that she didn't even have use of her left hand right now! It's amazing actually!

Tuesday, December 8, 2009

CDH on the Little People!!

I just thought for the CDH community that this would be great for us all to see! Another baby who was born where they tape the Little People may be on the show! Here's the link to check out the baby's blog. I hope that TLC can do a bit for some CDH awareness!!

Saturday, December 5, 2009

2 years hearing

Two years ago today, Kristen was activated with her Cochlear Implant. She heard me say her name again for the first time. Kristen lost her hearing at about 6 mths old. It was confirmed at a sedated ABR when she was 7.5 mths old. It was routine scanning due to ECMO and high frequency ventilation. It also could have been all of the different life saving med's that she needed as well. Without this life saving measures she wouldn't be here with us today. She may be deaf, but she's alive. And as I meet, read about, and hear about these CDH babies that don't make it, trust me, I don't take for granted that my baby is here. She's almost 4 years old now, and I'm so lucky to have her. We may have challenges all related back to her rough start at life, but we survive and we make it.

Kristen has just begun to have expressive language as well. We have worked for sooooo long on signing! I mean really! Since we got diagnosis! So now going into three years! And she now has about 10 signs. YAY!! And she's also begun to have spoken words too! 10-20!! I know it's not as quick as a typical CI canidate, but I take what I can get, and celebrate the small steps each day. It's almost like because she has to work so much harder to get the small milestones that a 'normal' kid does, that it seems that much more exciting because she has truely worked hard for it!

Well Kristen, my baby girl! Here's to a happy two years of happy listening!

Thursday, December 3, 2009

Roll over Roll over so they all rolled over....

Kenny rolled over today! And he wasn't even mad when he did it! He did it with such intent and so slowly and precisely. I was worried about the direction that he went, so I put him back on his stomach to see if he would go the same way again...nope he went the other way! I was so impressed with him! It's earlier than any of the other three kids, and he was the earliest! And considering he's such a grumpy child, I thought that he would just sit there screaming...but nope! I can't wait to see what he can do next!

Thursday, November 26, 2009


It is now just 2:30am. And I am up from feeding Kenny at 1AM. It's not that he's screeming...or playing...he's actually just looking around. That's not the issue. The issue is that I came back to bed, and went to put a bill with the computer. (The computer is next to the dryer in the laundry room. It's the only quiet spot in the Anyways, my food slips out from under me! Oh dear! I turn on the light....and a blue sea of fluid. The Tide Ultra has fallen off of the washing machine. The full Costco size Tide Ultra has fallen off of the washing machine! Oi!!! So here I sit after an hour of using the steam cleaner to suck up the liquid detergent, using a towel to get the residue, and then pouring straight water on the floor and again sucking up with the steam cleaner, and then another towel to dry! I hope I got it all!! Now how do I go back to sleep??!!! LOL

I must add that after all of this at 3AM I woke Kenny up to top him up so he wouldn't wake up in two hours to feed again, and yep....he power puked all over the floor! I can't win...lmao!

Saturday, November 21, 2009

I can't believe that no one was screaming!!

We got our Christmas pic with Santa done today! And no one was screaming in it! I'm so pleased!

Tuesday, November 17, 2009

3 mths old

Kenny turns three months old this week! I can't believe how quickly they grow up. He got weighed at the dr's office yesterday and is a whoping 10lbs 10oz!!! Big boy. He's already uncorrected on a regular growth chart at the 5th percentile for weight! He's doing some good things too. like good head control. smiling a bit. he even let out a giggle the other day!

Thursday, November 12, 2009

IDP and assessments!

Our Infant Development Consultant was here today! And Kristen is at the level of a three year old! This is great as when she was assessed at the end of June for the Autism spectrum, they placed her at 24 mths! So in the matter of six months she has jumped 12 months!! Yay Kristen. Well the assessment also shows delay in speech etc. But that's expected as she's only been hearing two years next month!

Sunday, November 1, 2009

6 years ago today

Six years ago today, we said I do.
Six years ago today, we had no idea where we'd be.
Six years ago today, we began a journey that most will not even begin to imagine their lives would go.

Six years ago today, we began to plan our family.

We succeeded on the first try. Joe joined us August 9th, 2004. 7 weeks early. He was so small and perfect in our arms. We took him home on his 19th day. We watched him grow, and smile, and walk, and giggle.

We needed to expand on our family.

Again we succeeded on the first try. Kristen was diagnosed at 20 weeks gestation with Congenital Diaphragmatic Hernia. There was a hole in her diaphram on her right side allowing her liver, and small and large bowel up into her chest cavity. We were given a 50/50 chance of survival. She joined us on Feb 12, 2006. 3 weeks early. We could not hold her. We did not even hear her cry. She fought hard, and succeeded. I took her home after 3 months in hospital, on my birthday! May 9, 2006.

After all of the therapy, feeding issues, hearing loss, constant worry...we decided that our family still wasn't quite complete.

Again, with not much time we succeeded after 2 months.

Courtney joined us 5 weeks early, on Feb 13, 2008. She too was so small and so perfect. This time we got to hold her right away. Gary got to cut the cord that provided her life inside of me. She stayed in hospital for 6 days.

When Courtney was just 5 months old, we got Joe diagnosed with ASD. (Autism Spectrum Disorder). It was hard to take at first. We knew that there was going to be complications with Kristen. And delay's, and challenges. With Joe, we were prepared and kind of knew something was off...but hearing it and reading it in a 15 page report was hard. We moved on, and have gotten Joe the help that he needs.

We thought that our family was complete...well someone else had a plan for us! :)

Without even trying we conceived again.

Before the baby came, we got diagnosis that Kristen too is on the ASD. It didn't seem to bother us so much this time...we knew that there would be even more supports in place for her too.

Kenny joined us 8 weeks early, on Aug 20, 2009. We thought the other's were small!! Yikes, not so much! Kenny was so tiny. But perfect. We waited for Kenny to come home and kept waiting and waiting. His Bradycardia (heart rate slowing) kept on going. So the Dr did a head ultrasound to find significant brain injury. Wow! This hit us like a ton of bricks. After we gathered ourselves, and got all of the information, we have moved on from diagosis, and have people in place to help keep Kenny on track. He came home on day 47 from the hospital.

Six years ago today, I would have never guessed that we would have had the ups and downs, the good the bad and the ugly. We are still in love, some days more than!! ;) But in six years, as a couple, I don't think that we could have been tested more in our relationship. We have become so strong because of our kids, and for our kids.

Six years ago today, I would have never guessed that my life partner, best friend, husband, and father of my children would have helped to create such wonderful children with me, and such a wonderful family.

Six years ago today, I married my Best Friend!

Friday, October 30, 2009

Angel Andrew

Again I hate making these posts. They say that the survival rate of CDH is 50/50!! I some how find that hard to believe by the amounts of Cherubs earning their Angel wings. Please keep Andrew's family in your thoughts and prayers.

Thursday, October 29, 2009

WOW!! He's gained weight

After Kenny's week of power puking and being 8lbs 3 oz for a week, he ended up gaining 10 oz over the last week!!! It's really amazing how quickly the reflux med's have helped him. He's getting his neck strength going on now, and starting to smile at us!

Courtney, well poor little girl is getting two eye teeth in! She actually looked at Daddy today pointed to her gums and said "owie". So cute! So sad at the same time. I have to say, after having two speech/ and developmentally delayed kids first, watching a child develop 'normally' has been quite neat! The language that she has at 20 mths old already just blows my mind! It's great though, because she's a great model for Kristen and I think that Kristen is learning from her!

Tuesday, October 27, 2009

Finally settled out

Finally Kenny's reflux has mellowed out. My fears of the unknown reasons are also going to be put to rest with his scheduled head ultrasound on Fri. Too bad it took so long to get a damn appointment. I'm pretty sure that it's not due to the pressures of the brain, but what if it was! How can they let it go so long with such a worrysome issue??!! It's really rediculas. But his med's are helping, and he's now able to get some more tummy time and is lifting himself up onto his forearms! I'm so impressed!! He even did some cooing at his toys yesterday!

Kristen has been doing some amazing things with her communication as well!!! I'm so proud of her when she does. It's becoming so much more conventional types of talking/signing that it's just so cute!

Courtney, well she's gonna make me gray I tell ya!!! can tell from the picture of her in Kenny's crib with him sleeping in it!! Crazy kid.

Joe has been doing a lot more Autistic like behaviours lately. It's kinda our fault though. He does seem to benifit from the Gluten free/ Casin free diet. I feel sorry for the kid. It's almost like watching someone with terrets syndrome (sorry for the spelling), and he can't help but do the behaviors. So now we just have to wait for the Gluten to leave his body, and my calm happy Joe will come back!

Friday, October 23, 2009

It seems it's getting better

Thank goodness. It seems like the med's are finally helping the poor little fella. He's not screaming through his feeds anymore, and eating more again. Thank god we had Kristen and I now have the knowledge in what to do to help so that we could avoid feeding issues.

It also seems that Kenny's eyes are more focused and he's starting to track now. We still have to go to the eye dr to get confirmed how much he is seeing and what that's going to look like.

Everything around here is looking up, and is A-O-K!!!

Thursday, October 22, 2009

The upper GI showed nothing so far

So the Upper GI study showed nothing so far. So I stalked out the ped because I knew that he was on call at the And he told me just to go to his office, it's across the street from the hospital, and we got the prescription for Omeprazole. So here we go with another waiting game of seeing if this works. We're still waiting for the head U/S too.

Wednesday, October 21, 2009

Upper GI study

Tomorrow is Kenny's upper GI study. I'm hoping that we can get some answers. The puking is just so terrible to watch. And I worry about growth and development as well. I can't deal with another kid with feeding issues. It's been so draining working through Kristen up until this point....and she still doesn't chew. Explain that one to people. They just don't get what it means or how a kid can't chew. Well it's not that she can't, it's that she doesn't really get on how too. Oh well. Again, I'm hoping to get some answers tomorrow, but who know's if they will tell me anything at all!

Monday, October 19, 2009

Dr's appointment.

I took Kenny to the Pediatrition today. My gut feeling about the power puking and eyes made me feel that I needed to do that. I wasn't satisfied with what the dr's had said on Sat in the ER. So the dr is sending him for a head ultrasound, just to put that to rest for me. It's a possibility, but who really knows until we look. He's also sending him for an upper GI study. My feeling is that this may be the culprit. If there is something tight or loose with his tummy then it needs to be fixed with surgery. If it is none of the above, then we need stronger reflux meds. It's just so awful to watch a child reflux. It brings back the awful memories of going through this with Kristen. And of course all of the emotions of that time come rushing back. I just want one day for me not to be able to think about my kids in a 'clinical' or 'theraputic' way. I'd love to just be MOM! I know that that's not my path though. I know this in my head, but in my heart it hurts. I know in my head that everything happens for a reason, but again, not in my heart. I stay strong for my kids, because if I don't who will. Well I know someone will, but it's not their mommy!

Saturday, October 17, 2009

Not too sure what to think

I took Kenny to the ER today. He's been having his eyes going downward, looking like a sunset at times. And after talking to a friend whose daughter has hydrocepholous and the symptoms, I decided to take him in. He's been acting strange these past couple of days. Puking more, (even though he's on reflux meds), crabby when he's up, waking up crying like someone has just pinched him, and just not himself. The dr in the ER said that he looks fine, and we upped his reflux meds. I somehow am not convinced. I guess I'm just too worried now. I'm not that kind of parent to be paranoid though. So when I do worry, I know that most would have had their kid in ten times faster than me....well that's not really true, but you get the idea. I don't run to the dr with every runny nose. I go when the kids need to, or my 'mother's' instinct tells me, OK GO!!! I'll try to sleep these next two nites, and hopefully things will be better tomorrow.

Monday, October 12, 2009

So far so good!

Courtney is absolutly enthralled with her new little brother. All she talks about it 'baby' 'baby' 'baby'!! Here's a couple of pic's of the two of them. She even likes to share tummy time with

Friday, October 9, 2009

Things ain't goin too badly!

It's been two nites having Kenny home now. It's been wonderful. I'm not crabby from being up with the newborn yet...ask me in a few He seems to want to be up at nite, but not in a bad way. He feeds and then just wants to check everything So it's not like he's up every hour or anything like that. The adjustment for the rest of the kids is going well. Kristen has gotten over herself and smiles at him now. We are so blessed to have such beautiful wonderful children. I can't wait until Kenny is older toddling around with the others!!

Tuesday, October 6, 2009

We are home now!!

He's home, he's home, he's home!! Kenny came home today! After 47 days we are now complete! The welcome home for him went well. Joe is so excited and watches him every second! Kristen, well not so much! She is so upset that someone else is on my lap now!!! Oh well, she'll get used to it soon enough!

Sunday, October 4, 2009

We're getting close...I think

It's been 55 hours since Kenny has had a brady. I'm wondering if I'm going to get to bring him home tomorrow, or if the Dr will wait until Tues. I'm afraid to ask!!! I don't want to jinx things. I must say that things are soooo ready for him here that it's rediculas. He's one week away from his due date today. It's just been such a roller coaster this last week and a half. Not the coaster ride that I had expected to ride, but a ride none the less. I wake up everyday just thinking positive.

Friday, October 2, 2009

Another Baby Earned his wings

It makes me sad to have to say another baby has earned his angel wings. CDH is such an awful birth defect! I know how blessed that I am that all of my children are here and with me....difficulties, challenges, and all. I don't ever take for granted how lucky I am. Please keep baby Vincent in your prayers!

He's due in 9 days

Kenny is due in 9 days and he's still in the hospital. They did the EEG yesterday and we're still awaiting the results. I'm going to meet with the dr tonite when I go into visit to see what the plan is. I don't want to take him home if he's not ready, but I need to know what's going on. He went 2.5 days without a Brady, and then yesterday just after I laid him down to sleep, Yep, you guessed it he had one! I just feel like there are so many unanswered questions. And I just feel like I'm at my wits end sometimes. I'm positive and ready to move forth in his therapy when he comes home. The initial blow has now seemed to have passed, and I just want to be done with the NICU, and start our lives together as a big family. Kenny just turned 6 weeks old yesterday, and I had no idea that this is the way the rollercoaster was going to ride.

I feel like when I'm in a group of people with kids, that I'm now the mom that's like..."oh ya my kid has that" "yep feeding issues, been there too" "developmental delay's, ya that too"!! It's a bit of a joke, like I'm trying to make things up for my kids to have and the actual fact is that they DO have it!!! There are at times som many things running through my head that while I'm just having a normal conversation with people, the thoughts are louder than the conversation. I hope that they will get quieter, and things will settle out, and that I can create a sense of normalcy in our house.

Wednesday, September 30, 2009

Touched my heart!

I must say thank-you to everyone for all of your kind words and support. I must also say that I cannot believe how giving and forth coming people are. The love I feel from all of my friends and family is just too much for words. This was a post that a friend that I met just a few short months ago when she was pregnant with her Angel Anika was to be born with CDH. Anika was born six months ago yesterday. She earned her angel wings. I was so hurt when I heard that she has left this earth. And I was broken over this families loss. Well her mother dedicated a post to me today. It again brought me to tears....but for different reasons and I wanted to share it. Thanks so much Lori.

Yesterday was Anika’s six month ‘birthday’
I’ve been mulling over what to post for a while… I want to put down on ‘paper’ as it were, some of her days here on Earth, but cannot seem to bring myself to. It’s still too painful, and too full of joy for life, and wonder at it all, and respect for the Dr.’s and Nurses who cared for her, and so many other things.

Yesterday we also heard some difficult news about a friends baby boy who was born prematurely but will have THE MOST loving, caring, compassionate family you can imagine… his Mom is having a hard time and I wanted to dedicate this post to her.

Bobbi you are amazing and your children and your family are blessed to have you!
A very good friend sent this to me a while ago, and now I want to share it with you (I don’t know who wrote it):

Invisible Mother……

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I’m on the phone and ask to be taken to the store.
Inside I’m thinking, ‘Can’t you see I’m on the phone?’
Obviously, not.
No one can see if I’m on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.
I’m invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?
Some days I’m not a pair of hands; I’m not even a human being. I’m a clock to ask, ‘What time is it?’ I’m a satellite guide to answer, ‘What number is the Disney Channel?’ I’m a car to order, ‘Right around 5:30, please.’
I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated sum a cum laude – but now they had disappeared into the peanut butter, never to be seen again. She’s going; she’s going; she is gone!
One night, a group of us were having dinner, celebrating the return of a friend from England .
Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in.
I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself.
I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, ‘I brought you this.’
It was a book on the great cathedrals of Europe ..
I wasn’t exactly sure why she’d given it to me until I read her inscription:
‘To My Dear Friend, with admiration for the greatness of what you are building when no one sees.’
In the days ahead I would read – no, devour – the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work:
No one can say who built the great cathedrals – we have no record of their names.
These builders gave their whole lives for a work they would never see finished.
They made great sacrifices and expected no credit.
The passion of their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees’
I closed the book, feeling the missing piece fall into place.
It was almost as if I heard God whispering to me, ‘I see you. I see the sacrifices you make every day, even when no one around you does. No act of kindness you’ve done, no sequins you’ve sewn on, no cupcake you’ve baked, is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.’
At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.
It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.
When I really think about it, I don’t want my son to tell the friend he’s bringing home from college for Thanksgiving, ‘My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand basted a turkey for three hours and presses all the linens for the table.’ That would mean I’d built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, ‘you’re going to love it there.’
As mothers, we are building great cathedrals. We cannot be seen if we’re doing it right.
And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
Great Job, MOM!
Share this with all the Invisible Moms you know…I just did.

Tuesday, September 29, 2009

Just so broken.

We met with the neurologist today to be told that the damage is extensive on Kenny's brain. He proceeded to tell us that the gross motor skills will be greatly dimished, actually he said it would be suprizing if he walked! He also said that he would be greatly developmentally delayed. I just don't know what to think. Of course I am thinking positively. But really, I'm ticked! Why do I have 4 kids and 3 of them will have to work so much harder than the rest??!! I know that we are 'special' parents getting 'special' kids, and that there is a reason for these gifts being given to us. But it doesn't mean in the interm that I'm not hurt, upset, scared, or even down right Pi$$ed off!!! I don't think that I'd be normal not to think that. I have 4 beautiful children. I love them so much. It pains me to have to live each day to try and help them get 1 step forward to everyone elses 3! I'm lucky to have all of my kids with me. I know that. I just don't understand why???!! Kenny will be having an EEG sometime this week to check for seizure activity as well. We still don't know why he's having Brady's (bradicardia). So maybe this will help with some answers. It's funny. Kristen was in the hospital with CDH for 3 months. Kenny was a preemie at 8 weeks early, and he's been in the hospital already half of the time that Kristen was with a life threatening abnormality! I think that I'm just going to need some time to heal and deal with all of this. I have to say, knowing that my baby was going to be born 'sick' (CDH) was almost easier to deal with than having a baby that I thought was healthy and well and be given this news today.

Thursday, September 24, 2009

Can't our kids just catch a break??!!

So the results of the head ultrasound for Kenny came back today. There is shadow's on his brain. What does this mean??!! Well essencially brain injury. They will do an MRI on Monday, and the dr's say we can bring him home on Tues. So we'll see how that goes and plays out. I am angry. I know that my children are here with me. I love them so much! But why can't they just catch a break??!! I don't really know what else to say right now! I'm just mad, frustrated, sad, and whatever else emotion I have right now and can't put in words. I know that my children will do well. I know that they will succeed. I just don't know why they will have to work so much harder than everyone else to get there??!! Anyways, I think that I should go to sleep right now, and I'll meet with the dr's tomorrow to see where the shadow's are and potentially what the challenges may bring.

Could he be on a good trend??

It's been now 26 hours since Kenny has had a Brady. Maybe the kid really does want to come home!! It's been so stressful trying to balance both world's right now. The kids need me here, and well, I need to be at the hospital too! Kenny should know who mommy is, and not think that he's got lots of them that tend to him when I can't.

I'm not holding my breath until I get the phone call that I can pick him up and bring him home. He still needs to do a carseat challenge.

If it was feeds that had been holding him there, I could have understood that. Well I could have brought him home with an NG tube in, and cared for him. I'm familar with all of it from when Kristen had her's. Not ideal, but at least he would have been home to get strong here. He's now 6lbs 4 oz! Big boy in the NICU!

Saturday, September 19, 2009

SO Frustrated!

I know I can't complain. It's only just been two days over 4 weeks. But he's still there!!! Kenny is actually 37 weeks gestation tomorrow. Usually preemies come home between the 36-37 week. Well there doesn't seem to be an end to that as of yet. He's STILL having brady's. It's just so frustrating. I'm exhausted to boot! I have to balance visit's with him, and being at home to get the kids to school. I know he'll be home soon enough, but I thought that kids were supposed to move out at like 18, not straight from mom's!

Sunday, September 13, 2009

Can anyone help me figure it out!

I get nice comments left on my posts here, but I have no idea that they are left for me until I check my blog. I want everyone to know that I do get them, and I wish that there was a way that I could respond back the same way we do with facebook. If you would like you can always add me on FB as well! you can search my key name thing of Bobdoble. Thanks everyone for all of your support and nice comments.

Saturday, September 12, 2009

Trying all bottles

So I convinced the nurses to try to bottle feed all bottles with Kenny now. So we'll have to see how that goes. He's also started to have less Brady's! YAY. So my guess if he keeps this up is that he will be home next Thurs. But as we all know, it's the baby's schedule, not

Wednesday, September 9, 2009

First days!

Courtney had to have her picture taken too!
My little CDH miracle baby! Her first day of preschool!

Handsome Joe in his new school uniform!

So Joe started Kindergarden yesterday, and Kristen starts pre-school today!

Monday, September 7, 2009

Taking some full feeds by bottle!

Well Kenny is starting to take full feeds by bottle. He did three for me today! so still working on feeding, and then the damn Brady's that he's having. That's where his heart rate dips a bit! Aparently a preemie like thing to do. My other's didn't, but every baby's different.

On another note, Joe start's kindergarden tomorrow! He's so grown up now! And the next day Kristen start's preshool! Yikes! They are both doing so well, and growing up so quickly!

Friday, September 4, 2009

New Cochlear Implant Released!!!

It's amazing to see technology and how it helps my daughter hear! And then to see that there is already something better out there is even more amazing!!!!

Just a couple of links showing what it looks like. The FDA has approved it for the US right now, and I only imagine it's a matter of time before Canada gets it too!

Wednesday, September 2, 2009

Bath time with mommy

I gave Ken his first bath today. Well, I'm sure that he's had sponge baths, but not a real one. He was actually quite quiet! I was suprized. I think he actually liked it! He's been doing well with feeds. About every second feed he bottles half of his feed. So I'm happy with that. I let him know today though, that I won't allow this to still be going on in a week and a half! I'm ready for him to come home, and for all of us to begin our lives together as a BIG family!! Well big by today's standards anyways. And he is my last little one, so I'd like to start to be able to enjoy him too! But I know he will do it in his own time.

Monday, August 31, 2009

And he takes 28 CC's!!

Wow! did he ever! Kenny is just chuggin right Well as fast as he can be. I would like to have him home now though, but do understand the need to have him where he's at. I was so proud to see that he ate so much for me though. I'm hoping when I go back later today that he'll do at least half of that. I know that he's working hard, and just a little guy.

Sunday, August 30, 2009

Rest peacefully Ireland

I am so angered to have to write another post to say another baby has lost her battle with CDH. It's sooooo not fair!!! I know life is not fair, but really! This is rediculas. I have been corresponding with Chanda, her mom, for awhile now. I will probably never meet her or her family, although I wish I could. They are such wonderful people! These awful things seem to happen to these wonderful people and it's not right! I know that Chanda and her husband Mike did all of the research and new all of the odds...etc. We all do. Please pray for them today. I can't even imagine how hard it is for them.

Saturday, August 29, 2009

Kristen's hearing

With all of the commotion with the new little one here, I have forgotten about Kristen's last hearing test. Well we test her left ear still due to the fact that it's not implanted and from being on ECMO she may still have progressive hearing loss in her ear. I have been on a quest for a bi-lateral implant on her left side for over a year now. I feel that listening like there is an ear plug in our one ear is an unacceptable way of listening. How does one isolate sounds??!! We don't hand out one hearing aid to someone who has hearing loss in both ears. We give them two! To help them get speech and environmental sounds.

So anyways, now that we have not been able to get reliable results in the sound booth with just behaviours, we will send Kristen for a sedated ABR. Just another appointment in our world! So now we wait!

Make the transfer happen!

So Kenny was transfered to a hospital closer to home yesterday! YAY! Twenty minute drive on way instead of 45-60!!! And I even got to give him his FIRST bottle!!! He took 12 mls! First time!!! It was nice to know that I got to do it! I have never given any of my kids the bottle first! It's always been the nurse around when they make that decision. I will post pic's later, I just left the camera in the

Wednesday, August 26, 2009

Daddy having snuggles for the first time!

Today Gary suprized me when I was on my way into the hospital to visit Kenny and told me that he was on his way too! Gary hasn't held him yet!!! So they had some nice snuggle time and his stats were just great the whole time.

It's weird. When Joe was born I was devestated that he couldn't come home right away. I didn't clearly understand everything that a preemie needed. I got that he needed to do some things, but I felt that the dr's kept him there a couple of days longer than they needed to. And then we had Kristen! CDH monster!! And wow! Did that ever put things into perspective. I didn't want to rush too much, but I wanted her better. It wasn't the same as a preemie thing. Then Courtney came and she had her short stay. I was totally fine with that and she had her short little stay at the Special Care Nursery. And now Kenneth. Well he's the earliest that I've delivered, and you would think that I'd be freaking out, and sad, and worried. But no. I'm none of those. I know that he's fine, and just growing to be healthy to come home. He had a bit of Cpap, and some TPN feeds and now he's just got monitor's and an NG tube. Not that I want to make his situation less than it is, but after CDH and ECMO!!! This feels like a breeze! I know that this is just a whif in the moment of time, and I will get him home for a lifetime! He's doing so well, now we just need him to get bigger and I think he'll start bottle feeds this weekend sometime or next week, and we'll go from there!!!

Tuesday, August 25, 2009

No more support!

Kenny has now become a man of few No more IV, and no more CPAP. He just has his feeding tube and the monitors. And they are already asking which hospitals would be good to send him to closer to home for me!! I expected the respitory support for 2 weeks, but he's just gone on his own thing, and said forget it!!!

Monday, August 24, 2009

Under the lights!

Because of the jaundice, Kenny ended up under the lights for awhile. They also had trouble finding IV low and behold...he got the NICU hair cut with the nice IV cap! Hopefully they can get his feeds up to the 30 mls every three hours in the next day or so, and he won't need the TPN.

Sunday, August 23, 2009

Holding Kenny

I got to the hospital for a visit with Kenny, and the nurse asked if I wanted to hold him!! Who would say no!!?? Of course! He's doing well with CPAP and he's going to go under the lights for jaundice today...not much else he's doing!

Now on CPAP

Kenny's been moved from conventional ventilation to CPap and doing well. He's been on room air for most of the time. He's gone up a bit here and there with O2, but only for short periods of time. It's now been a good 36 hours without the extra oxygen. He's a little bit yellow from jaundice, but hey, they're keeping an eye on him. Now we just need some growth, and no more respitory support, and then feeds, and then home. But nothing that we can't handle. It's just hard to get to visit him having the distance, and three other small kids at home. It's a 45 minute drive one way to Children's hospital. Once he doesn't need the respitory support they can transport him to a closer hospital.

Saturday, August 22, 2009

We welcome Kenneth Alan Taylor

So my little guy just couldn't hang on!!! On Thursday morning, I lost my plug, and my hard labour began at 11:30am. I still wasn't even sure that it was true labour, as I've been having regular braxton hick's since 20 weeks that were 3-5 minutes apart.

So I called Gary at 11:15, called Taisha to come and watch the kids and by 11:30 I had Jolene on her way as well and was on the phone with 911 knowing that I wouldn't be able to drive myself. Very quickly did everything happen. My neighbor saw the ambulance and came rushing over. I passed her on the stairs and said people are on their way to watch the kids, send Gary to Langley, and I hopped on the stretcher and away we went. I had the urge to push on the way but held out until we were on the mat ward in Langley.

Just as they were going to move me from the stretcher to the bed, I pushed! And opps, there went all my water! Everywhere. And then the contractions stopped. No more pressure on the uterus until it shank down again. They checked me, and said I feel cord. I knew immediatly that ment C-section. Gary came in got into scrubs, and they took me to the OR.

At 1:38 PM, August 20, 2009, weighing in at 4 lbs 11oz Kenneth Alan Taylor made his debut! He was born at 32 weeks and 4 days. So he's going to spend sometime at the hospital...but with our history of kids...hey he's not doing to badly. Joe spent 19 days, Kristen 3 months, Courtney 6 we're used to this.

I do want him home though, and I can't wait until that happens. We like to do things big around!

Wednesday, August 19, 2009

Ireland Rose

Chanda and Mike have welcomed their CHERUB into this world today. They begin thier CDH journey with her! I ask that everyone prays that she is strong and the DR's can allow her to go home quickly with her brother Tristan! I have been cyber 'chatting' with Chanda for the last couple of months...and love to read her blog. She is so honest in her feelings and what's happening. Nothing is sugar coated, and there is anger, fear, hope, excitement in all of her updates. I felt the same way when I was pregnant with Kristen. I just didn't do a blog or journal thing. I do regret that I think looking back it would have been an important outlet for emotions and feelings. Please check out Ireland's blog, and keep on praying!!

Wednesday, August 12, 2009

Prenatal appointment

So I'm officially into my 31 week now! WOW does time ever fly fast. I'm starting to feel like I need to sleep all of the time. But of course I can't due to the energy of the other three animals that I care for daily...just kidding. It's just my kids! I am measuring a cool 39 weeks! WOW! And I tell you I feel it! I have been talking to the kids about the 'baby' and he's in my tummy. Joe's kinda getting it, and Kristen, not so much. Well Courtney, my smart alek of a toddler, points at daddy's bare tummy, and say's while signing 'baby'! I almost died laughing! I'm just not used to kids saying things in my home so early. Joe and Kristen were/are so speech delayed that one forgets what's supposed to happen when! But who can blame the kid for picking it up so quickly. She was going to two speech therapy sessions a week for most of her life! And it wasn't even for her!!! Kristen is starting to do some really good pointing and is even using spontanous sign!! Just a few, but hey...I'll take whatever I can get! School starts in another few weeks for the kids, and I'm excited and sad! They can't stay my babies forever now can they??!!

Saturday, August 8, 2009

Baby Beal

I am sad to announce that baby Jackson has earned his angel wings today. I can't even imagine how hard this is for his parents. CDH is so unheard of but so common! I wish that there was more understanding of why!!??!! Who??!! and How come??!! It's so hard for me to 'get' why some are lucky and other's not so much. These children put up such fights. If you want to read thier blog I have posted thier link here for you... Please pray for this young family in such a hard time!

Thursday, August 6, 2009

Not too much exciting around here!

It's sure been nice not having all of the running around that we usually do during the school year. It's even nicer, because being as big as my tummy is growing would have made that a lot harder. Joe is doing well. We just got his speech and language assessment finished, and I'm so proud of him! When we started a year and a half ago, his speech and language was at a 12 mth - 18 mth level. Well 18 mths later, he's at a 3 -3.5 year old level! In only 18 mths! He has worked so hard! I'm so proud of him, and can't wait to see how well he continues to do.

Kristen has also made some expressive language gains. She's starting to point, with intent, and make vocalizations when appropriate for no. And she's also retaining a couple of signs. She points at peoples feet now, and signs shoes! She pointed at my pop and then me, and then yelled at me with intent that she wanted some! She's copying counting 1-3!! And signing it too! I can't wait for Sept to start when she gets more school and that focus started!

And Courtney! Well she's just a typical little kid! And so outgoing! It's so different for me to watch. I smile and kinda wonder what Kristen and Joe would have been like if they didn't have their challenges when they were little like her. I don't love them any less, but sometimes get sad when I think at how much harder they have had to work to get to where they are. Courtney has a expressive language of about 15-20 words, and she also uses about 5 signs. Simply amazing to me!

I wonder what this next little fella is going to be like. We've been calling him Shawn for right now. I'm pretty sure that that will be his name, but of course we may meet him and decide that that just doesn't work for him. He's an active little fella. And gets more active when I eat. Just like his Daddy, and

I'm now 30 weeks and am starting to get nervous to make it to 32 weeks, and then 34 weeks. I'll be more comfy at 34 weeks if he decides that he's had enough in there. I'd prefer 36 weeks, as I'd like to know what it is like to leave the hospital at the same time as my baby. I do know that he would survive right now, but there would be the typical preemie complications. I'd just like to avoid that. I'd like to be given a break here and there once in awhile...and please don't think that that comment was feeling sorry for myself. I would never change my kids or my life for anything in the world. But sometimes it can be hard. And that's just he truth. I guess that there is more going on around here than I orignially figured!

Monday, August 3, 2009

Long weekend camping

I feel like I don't update my blog that often. I think that it's because of the summer, and the fact that we have nothing on the agenda like during the school year. It's kinda nice actually to have nothing 'scheduled'. We went camping this last weekend. It was quite nice, and relaxing. Sometimes it's not, depending on what the kids have to do while we're away. But this time was nice. We went to Ferndale, and did some cross border shopping while we were there. My favorite past Joe finally got comfortable enough in the water to SWIM with water wings on! I am so proud of him! We had trouble even getting him to leave the steps when we got there on Thurs nite!

Wednesday, July 29, 2009

Baby Beal is here!

Another baby was born this evening, and we need lots of prayers for him. Jackson Beal was born with CDH, and the dr's are having trouble stabilizing him. I ask that you go to the list of blogs that I follow, and just check in and pray for them. This is such a hard time for parents, and it brings back a lot of memories. Sorry here's the link...

Wednesday, July 22, 2009

And Baby makes four!

I had an ultrasound today. Just because I'm high risk, with having three previous early babies, gestational diabetes, hypoactive thyroid, and at times high blood pressure! Wow, I sound like I'm living in a 62 year olds body. Actually I think that there are a lot of healthier 62 year old's out I just get nervous with the ultrasounds. Even though I've already had one with this pregnancy, I still fear that they will find something. Once you've been through them finding something wrong with your baby, I guess I just seem to worry. All of the questions that I have, not what is it??!! But is the heart in the right spot, is the stomach where it should be, the liver is under the diaphram, no thickening of the base of the neck, the brain looks ok, the kidney's, I'm not carrying too much extra fluid??!! The poor tech' must be a nightmare for them. And they can't tell you what they find, because they're not the Dr's. The tech today was nice though and really put me at ease. My cervix is long and closed, the baby is healthy, and active. Boy is he ever...even when she went to show him to me, he turned his head away!!! Camera shy I

Sunday, July 19, 2009

Joe's Birthday Party

We do Joe's birthday parties a little bit earlier than his birthday. It's hard in the summer for everyone to get here, with everyone on different holiday's etc. The kids had so much fun!

Tuesday, July 14, 2009

Baby Avery

I am sad to read that Baby Avery's parents have made the most difficult decision that any parent would have to be faced with, to allow their daughter who has been fighting CDH for the last two months, off of all supports. I know how hard it is to live with a child going through all of the processes and medical proceedures and struggles of CDH. I cry when I read these families stories and blogs. I pray for the parents, children, and medical staff involved. I will never meet these people in person! That's even sadder! I ask that as you read this you remember how precious the children that we have with are. No matter if they are healthy, sick, or special needs. Please let people know what CDH is! If you don't know, check it out and learn. It's an awful thing for anyone to go through or endure. We have too many angels from it. We need more awareness, and research to help to stop this from happening to our children. We need the survival rate to be more than 50/50! We should NOT have to bury our children. We should NOT hold our child for the first time as he/she takes their last breath's in our arms! Here is the link to Avery's blog! Grab a tissue, and say a prayer.

Pivot Point

I met with Pivot Point ABA therapy today. It was about a 2.5 hour long meeting, just of my expectations, and what we would like to see happen with Joe and Kristen. I think that it's going to be a good fit. I just have to be on the ball and see how things go. I'm not too happy that with the funding that there is still about 10 hours of therapy time alotted a week! We have so much going on, that I don't want to be stuck at home while this is happening! We'll see what happens though. Can't knock it until we try it! We are just fortunate that living where we live that we can be picky with the supports, and how the money is spent!

Monday, July 6, 2009

Calming down

I've started to be ok with my emotions over the last couple of days. Now I just need to start getting everything in place to begin therapies for Kristen. W've had a pretty mellow weekend, and summer so far. Just relaxing and not stressing over taking the kids here, there, and everywhere. We have a camping trip planned this weekend at Chilliwack lake. That will be nice and relaxing. Not too sure on how I'll be able to deal with the It's starting to get harder to move now. I get stuck if I lay on the couch the wrong And I grunt to move! I know that's hot! Joe is really trying to engage Kristen in playing with him, and she's sometimes willing! Courtney, well she is going to give me a run! She's got my attitude. Two of me in one house...oh dear! We're all in trouble!!!

Thursday, July 2, 2009

We have diagnosis

We got the diagnosis for Kristen today. She is ASD, autistic. Wow, that was hard to write. It's not like we didn't know something was wrong with her. For me it's just hearing the 'professionals' say it. I'm happy because the funding that we get for her is huge! She will be able to have support all throughout school! It's just the label that people assume with it. Joe is also on the ASD, PDD-NOS. So it's not like we don't know where to go, or what to do with it.

I just get angry! Why does she have to have all of these challenges. Isn't there enough going on with her??!! Can't anything just be easy for her! CDH! ECMO! BRAIN INJURY! MILD KIDNEY DISEASE! HEARING LOSS! and now ASD!! I know that she will be fine, and I will be the biggest advocate for her. Joe is doing amazingly well with the supports that we have in place for him. So I have huge hope for Kristen. It doesn't change who she is to me. Or how I love her. It's just hard to know that there is something else going on with my little girl. I had these same feelings when I got Joe's diagnosis, so I know in a couple of weeks I'll be fine. In the mean time, I just get angry, and sad, and emotional, and worried about my children's future. I know from my stand point for the future that I will give them what they need, it's the worry of other kids/peers making them feel like less of a person. We all know it's a mean, hard world. I want to protect them and shelter them, but I know that that is not going to help prepare them for the real world. I don't treat them differently. I treat them like typical kids. They get in trouble just like a 'normal' kid would. They get toys like a 'normal' kid would. They get excited like 'normal' kids do...well maybe over different things, but excitement none the less.

I think that the pregnancy hormones are making this worse on me as well. I worry about Courtney. And now about the new baby. Is this something that all of them will have. No one can tell until it happens. It's not like I can stop it or have control over it either. I just hope that because it is now 2009, the awareness of everything around us is educating people to know what's out there and that 'different' isn't a scary thing. I can only have that hope. I do know that the reality is that it's not a reality yet!

Ok, now that I've gone on and on, I should try and get some rest, the little guy is kickin' up a storm telling me it's bed time!

Wednesday, June 24, 2009

How could I have forgotten??!!

I did it! I swore I wouldn't!, but I did. I went and paid to find out whether the new baby is a boy or a girl. The Dr had told me that my next two ultrasounds are going to be done at the hospital, and the hospital's don't tell you. So I called the UC Baby ultrasound place, just for the gender determination only to find out that they could get me in that day! I was so excited. Gary had told me that he didn't want to know, so I had respected that and wasn't going to tell him. I also thought that this was going to be a good way for the kids to take a look at the ultrasound as well. They didn't allow kids in the 'regular' ones. Joe heard the heart beat and covered his mouth is shock, and suprise! It was so cute!! Well you can tell what I'm trying to do that suspense of is she going to tell us what it it is another BOY! I'm happy and excited about that. We will now be two and two. Such a nice balance! I'm so much more excited now that I know what's kickin' in it'll be nice to be prepared! And thus far, there is no CDH, no chromosonal markers, no heart issues...just a health baby!

Tuesday, June 23, 2009

Joe graduated from Pre-school

So it was Joe's last day of pre-school today. I was suprized that I didn't cry. I think it may be that I'll still be going back to Apple Hill for the next FIVE years with the other three So Joe will start Kindergarden in the fall. How quickly they grow up!

Here Kristen is getting her 'diploma' for finishing her first year of the PALS program at the BC Family Hearing Resource Center

Here's Joe receiving his Cap and diploma for Graduating the PALS program and moving on! He didin't want to wear the hat, well he did once we got

They did a drama for us...this is Little Miss Muffet!
Joe was the Kristen was Miss Muffet! She didn't like to do the drama's at the beginning when they did them, but now she participates. How quickly they grow and change!
I am a proud mom today! My kids are growing up, and doing 'typical' normal everyday kid things. I can't wait to meet my next little one!

Joe's follow-up hearing test

I took Joe in for a follow-up hearing test. His hearing is fine, this is just to check that he knows what to do with the sound. So I told him before we left that we're going to get his hearing checked. Not Kristen's. This is different for him, when it's something the same as her, but for him. So we walk through the door of the audiologist, and he starts tugging at his ear saying it hurts. The audiologist asks me how long he's been complaining that his ear hurt. I said just as we came through the door, and I smiled! Joe then tugs his ear again, and says it hurts, and he needs a hearing aid! LOL!! The audiologist looks at me, and I then point to Kristen and told him that his sister is deaf, and apparently Joe want's an aid too! I don't think that the audiologist thought it was as funny as I did. Because the look on his face told me he didn't have the best sense of humour. So Joe went in, and did fantastic! His hearing is fine, but we knew that from his ABR last year. Kristen's hearing loss isn't genetic, it's from her rough course at birth, so I don't worry about the other kids too much. We still get them tested, no different than getting their eyes tested, or the dentist. It's still important. I just thought that it was funny that big brother wanted to be the same as his little sister!

Wednesday, June 17, 2009

Not much going on around here

There hasn't been too much going on around here lately. It's been quite nice! Not as much running around, and getting the kids ready to leave the house early in the morning. Courtney is getting her land legs and trying a lot more walking! Kristen is making tonnes of different word like sounds, and Joe is communicating so much more in a functional sense.

The little one brewing is giving me the worst heartburn...I'm predicting a When I was pregnant with Joe, I had it the worst! The girls, not so much, well not this bad anyways!

Monday, June 8, 2009

Phsycological Assessment

I got a call from Sunny hill today, letting me know that there was a cancellation for the 25th of this month. That means that after this phsycological assessment of Kristen, that we will have a diagnosis on July 2!! I'm excited to finally have a direction to work with. At the same time, I'm getting nervous. I'm scared that there is just SOMETHING else for my daughter to overcome and work through. I went through these same emotions when we were going through it with Joe. So I figure it's gotta be is it anyways!! I know that once we truely know what's going on, we can work with her in her learning style. We can have everyone on the same page. We can have the same goals. We can reduce her, and everyone's frustration. It doesn't make it any easier on me though. I try and be strong. Well in public and to my family and friends. But sometimes it's SOOOO hard. But then I think of her smiling little face, with the softest cheeks and I know my miracle baby is here.

Sunday, June 7, 2009

Thomas the Train

We met a family that we hang out with in Squamish to go and ride Thomas the Train with the kids. Well the set up was nice for the kids, but the train ride itself was a sad disappointment. We went back and forth on the track for 25 minutes. I don't think that we got faster than 30 kms/hr!!! The kids didn't mind, but there were other families on the train that were like "that can't be it!" There was one mom who apparently had just started feeding her infant, and barely had the kid latched and it was time to climb off! It was hot, stuffy, and not air conditioned!

The kids didn't know any different, but I do when it was $100.00 for the family to go, just for tickets. And then gas and food. Oh well, the company was nice, and if that's all you have for an expectation, well then you would have enjoyed it! We won't go again, but hey, live and learn!

Thursday, June 4, 2009

Goodbye ABA

So I sent off the email to the ABA owner. I have decided to try more speech therapy with Joe and Sylvan learning center for the academics. I had just sent the email and five minutes later, I finally got a reply from the other ladies about scheduling! (I only emailed the co-ordinator not the other's so she didn't know). I didn't tell her my bad experiences that have pushed me over the edge, but just that I don't like the way that Joe is starting to act programmed. But the lady who emailed about the schedules, says 'ok so so and so can start on the 21st, father's day. YAH right, like I would do therapy on Father's day!!! So if she calls and wants to know the details of how everything came to a head, I will share, but other than that, as far as she's concerned, we're just trying another route for Joe for the time being!

Wednesday, June 3, 2009


I am soooo finished with ABA. But I'm not sure what else is out there to get Joe the help that he needs!!! It seems that they have him so programmed to give the answers that they need and prompt him that it makes me crazy. We have transitioned to the home based program instead of onsite group therapy. They have been so disorganized as far as scheduling, and getting things in order for me to be ready for it. I now have an email asking for all of these stimuli toys that he needs for his 'programs'. I have no idea when the next person is coming. No one responds to emails! I sent one out on Monday morning regarding scheduling, and no one has gotten back to me, minus the one tonite asking if we have these 'toys' around. I'm just sooooo sick of it all. I know that I've been given two children that have more needs than a 'typical' child. I love them to death. I just sometimes would like to let them be kids, and not have so much intervention. But at the same time, I know that some of the intervention that they get is so very much neeed at this young age!

Sunday, May 31, 2009

Chilliwack Lake

We had such a wonderful weekend away! So peaceful, and quiet. The kids really had a great time too. These are just a couple of pic's of the view!

Friday, May 29, 2009

After a very trying week!

My week started out, well it started!

We have PALS every Monday and Tuesday morning. Joe didn't have his ABA this monday, so he joins us. WELL, I pick up a little boy on Monday's after dropping off Joe. I didn't drop Joe off this week, and proceeded to FORGET the kid! I felt so bad! I had the hearing center call his house and let his dad know that I was coming to get him. I couldn't let him miss this monday, Ronald McDonald was coming to open up the new backyard that they had helped to build!
I seemed to have booked an OT appointment as well at an odd time. NOON! Why I would do that I have no idea! I would have never made it back in time to meet her. So I cancelled and took the little boy out with us for lunch after PALS.

After I dropped off the little guy, and came home, while driving, I noticed grinding with my breaks. How could that be?? I never heard the sensor noise,or let alone, I'm not a heavy braker. I called up my friend and asked her to have her husband to call me. I took in the van to Twsn (40 minute drive) and he looked at it. His face said it all! He felt so bad. The news was bleak. My caliper's had seized, and left my breaks on all of the time. I had no idea. I unloaded the kids, called Gary and let him know not to go home without us. I walked for a good 50 minutes, and he came to pick us up.

Now what do I do without a car??!! It's my life!!! To get places!!! I had called the hearing center to cancel the feild trip that we were supposed to be going on on Tues morning. The Albion Ferry! I was disappointed, until a little bird called me and asked me if she could pick us up in the morning! It was the mom of the little boy whom I get on mondays. Such a blessing! I understand that it's easier for me to get one person, than for one person to pick up me and my gaggle of three kids. We had a good time. Dropped Joe off a pre-school, and waited for Gary and an employee to drive me back my van. Joe had to miss Soccer this nite, but hey what do you do!!??

Wed we had Kristen's assessment process started for the ASD (autism spectrum disorder). That was a full morning in Vancouver.

Thursday, I was checking my online banking getting ready to deposit our check's for the mortgage to come out on the 27th, Fri. Yah, well the 27th isn't Fri, it was Wed, and it was the 28th!! My gosh, mush brain!!!!!!

And on top of all of this, we are getting ready to take the tent trailer out for the first trip of the year, and I had to load it, pack, and organize. My week was just a mess.

We are about to leave now....I think that I've gotten everything....but I'm afraid to go off of what I think at this point! I may be wrong!

Tuesday, May 26, 2009

Getting ready for tomorrow

Tomorrow Kristen goes for the beginning processes of assessments for the Autism Spectrum Disorder, at Sunny Hill. I'm excited for the whole process. Even if it's not ASD, we will have an idea of area's to work with her on. They will be able to let us know what her brain injury has really proving to be. I'm liking the answer's that we will be getting. It's going to take awhile to get everything together and organized to get the different appointments, but hey! Better to know now than at school age and have her struggle!

Saturday, May 23, 2009

Ultrasound Results

Well it was quick. They won't tell me what it is. And now I wonder about health of the baby until I go to the Dr's at 24 weeks prego. I wish that the tech's could let you know that everything is healthy. After having Kristen, I get so paranoid. The Ultrasound's that I had with Courtney, they sent me to MFM, so it was a dr doing the scan. He could tell me right away that everything is ok. And he told me that it was a girl! I will try to upload the pic's later. My scanner is on the fritz right now, so I'll have to try when I'm not so irratated.

The first Ultrasound for baby number four is today!

I'm pretty excited! We go for the first ultrasound today! I'm hoping that they tell me what it is too! They sometimes don't. At the same time I'm very nervous. Especially after having a baby with CDH. And of course, now that I've had a sick baby, and been in contact with so many other families, one starts to wonder how healthy babies are actually born!!??!! It seems like they need to have odds on what it is to have a normal baby. ie. it's 1-2500 to have a CDH baby, or spinal bifita, or cystic fibrosis. I have to wonder what the odds ARE to have healthy. I will post pics once I get one!

Wednesday, May 20, 2009

I am so Glad that it's bed time

Joe has really been pushing my patience the last couple of days. He gets into trouble and things that he shouldn't and Courtney seems to want to join in the fun.

Yesterday it was pulling the ashes out of the fire place while I was in the bath and playing with it like sand. I threw the two of them into the bath, cleaned up the mess, got their clothes ready. Got Kristen dressed and went back to get Joe and Courtney, to find that Joe had bitten into one of their bath tub felts, and turned everything red. Including himself and Courtney. Oi!

This morning we decided to re-run yesterday, except Joe didn't get as sooty! I had to throw Courtney into the shower with 5 minutes until we had to leave to take Joe to his ABA class. Took him to class.

We had IDP come for a visit, went back to pick up Joe.

Came home for 30 minutes to go back out for speech therapy for Joe. Of course he said, "no, take Kristen". I told him that she was going too! I told him to put on his shoes and let's go. Again "no" "no"'No" I dragged him down the stairs and put him in the van and away we went.

Came home. Checked email and sent some out regarding our appointments etc. Went upstairs to see that Joe had scooped some more soot out of the fireplace and let Courtney play with it. I chased him into his room, gave him sh!t, and came out to watch TV and calm down. Turned the channel to notice a few lines across the bottom of the TV.

Changed the channel. The lines were still there. Went and took a closer look, and low and behold, there was a star smack in the middle of the screen where someone had thrown, or hit it with something. The colours slowly did really funky things. There were flashes of light at the break, and then bloop, black screen!

I started to cry. That's all I needed to have happen at the end of my day! Well we replaced the TV...not happy about that, the kids are in bed, and I'm a close second.

I hope that tomorrow will be a better day, and now that Joe has finished his 'acting' out, maybe he can be that good boy that he usually is!

Sunday, May 17, 2009

Cloverdale Rodeo Fair

Unfortunatly Courtney wasn't old enough to ride any of the rides today. So she held down the fort in the stroller.

Big Brother driving his little sister in the dump truck! She has come so far! Last year this would have NEVER happened.
Going for a bike ride

On the roller coaster for kids. I have to say that I was so nervous that she would fall out. It was a good thing that Joe was on the lower side, because whe did end up leaning into him on one turn. All in all though, it was so amazing for us to see her actually going on the rides and not crying like we were killing her. Her world is opening up so much!

Saturday, May 16, 2009

Enjoying the Rodeo!

We got to enjoy the parade for the weekend of the Cloverdale Rodeo. It was nice and the kids really did enjoy it! We met some friends there making it that much more enjoyable.

Friday, May 15, 2009

CDH Insperational words to share

This was written by a mother who has been a poineer in the education, support, and awareness of CDH. She is someone that has such strength, and so many words of encouragement to share. She is someone that due to distance, I will probably never meet face to face. She is someone that I admire.

Thank you Dawn! Here are her words to share with you.

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.