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!

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!

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!

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!

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!

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!

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.

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.

http://www.cdhsupport.org

Joe's gonna start working from home

We have decided that Joe will not be going to the Group program for ABA anylonger. So we have a date to start the home process. It's June 1st. But the downside is that I have to find someone to be a junior interventionist. I hate looking for people for these types of things. I hate doing interviews, I hate not believing that what they are saying is true....you can hear it now!
"I love working with kids" "I have so much patience and experience". Of course how do you really know until they've been hired, and trained, and then what!? Oh well I guess the search will continue!

Joe got hecked on!

Today at soccer my parents came to watch Joe play. He doesn't always stay with the whole hour that they do, and sometimes just sits there to watch. Well today he ran down a path off of the park. One of the coaches went running after him, as did my mom. And then I got up. He was already clear down the path into the neighboring cal-de-sac. The coach was telling him to stop, and so was my mom. And he just looked back and laughed! Until I called him "Joseph Brent Taylor Get Back Here NOW!!" The whole park must have looked at me! At that point I just didn't care. I was more concerned that what if there was a car in that area driving and had hit him! He had tears in his eyes as he came back to see me. I told him what he did was dangerous. We took him in the car and left. Daddy told him that he was going straight to bed. I don't think that he's ever been so sad in his life. I feel bad, but at the same time it was scary to think that he could have been seriously hurt. We have never had him bolt like this on ANYONE!!! I don't feel the least bit concerned that the other parents were looking at me. People already do! I have the 'autistic kid' (even thought PDD-NOS isn't autistic, it's just on the same spectrum) and the 'deaf kid' and the baby with another on the way. Like we always say, walk a mile in someone else's shoes and see how you are then.

Sorry, but I feel sad inside because I had to give my kid sh!t in public, and made him cry. And he went to bed crying. I don't like to do this, but what more can we as parents do??

A mother's day present a day later times 2!!!

Well my little miracle girl went Pee Pee on the potty for the first time today!!! Oh we did the pee pee happy dance of joy! She was so proud of herself! I posted this picture of her so that those of you following can see her scar. If you can...lol...it's faded so much. She was a RCDH



Daddy and the older two.

Daddy showing Kristen how to make the dirt bike go! Man, she can't even touch the foot break, she's too short!!

And my other present, Courtney decided to stand up in the middle of the room today. She was so proud of herself, and kept doing it over and over. She even moved one foot in an attempt to walk. Oi, I'm in trouble now!!

A very special day

Three years ago today I recieved the best birthday present ever. It is something that I will NEVER forget!!! I got to take my miracle CDH baby home! The wonderful H word that we all love to hear. The day before when they were doing rounds, the Dr's said that they had made arrangements to move Kristen. I said home??!! They said no to Surrey Memorial. And I again told them no, home. I can take care of her. They said are you sure. I told them to talk to the nurses. I would be fine. They told me that they would make the arrangements for the next couple of days, and I again said no. It was my birthday tomorrow, and I will take her home. And sure enough they made things happen, and I did!! I will never forget my birthday, and not because of another year older...that's not a big deal...but because I was able to complete my family and bring my baby home!!

The Dentist!

I took the kids to the dentist yesterday! Yep all three at once! Getter done...lol. And the kids have all gained weight!! Joe was finally 40 lbs, Kristen gained too...26 lbs, and Courtney bringing up the rear at 19 lbs. No cavities, just another visit in six months!

Letter's for CDH

For those of you who maybe follow my blog, but I don't have as a friend on Facebook, I thought that I'd share this link with you. http://lettersforcdh.blogspot.com/ Another CDH mom has been organizing a mass mailing/emailing idea for us all to send/type our letter's on the same day. We are trying to get national, continental, and world wide awareness of this awful birth defect. Maybe we can hit someone with deep pockets who can help our treck in finding a 'cure' or at least bringing the survival from 50/50 up to much better odds.

Joe's new bed

We got Joe a new loft bed today! Well second hand from Craigslist new, but it's new to us! He's actually sleeping in his own room in his bed since the tent trailer has been up. That's been 17 nites that he's been out there...lol. I'll have to post pic's later as he went straight to sleep in it tonite. It was 8:30pm by the time we finished, so he was beat!

This Cannot be comfy!

I noticed that it was a little bit quiet in regards to Courtney! Usually we can hear her babbling away, or screeching!

This is what I found, beside her bed!

How is this comfortable??!!

I did scrape her off the floor and put her IN her bed! I guess her reading of Playful Puppies wasn't all that exciting!

Well it's about time the sun shone!

It is so beautiful today! We met up with Jolene at the park with her kids, and I had trouble dealing with the heat! But it was fun none the less. I used Kristen's FM system with her at the park. It was a little bit sad for me to watch her spin in circles looking for where my voice was coming from. But at least when there was distance I could still tell her, no!

We came home, and I set up the puddle pool. The girls loved it! Until one of them pooped in it and that just cut into everyone's fun!...lmao!