She's Four Years Old Today

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

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

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

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

http://www.cdhsupport.org

Nothin' really going on around here

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

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

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

Greatest sound to a mother's ear

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

Kenny's Pediatrician Appointment

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

We hit the money shots right now!

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

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

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

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

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

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

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

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

Moving along

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

I know I haven't posted in awhile

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

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

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

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

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