Tuesday, April 28, 2009

Went to see Joe play soccer tonite

In case you're wondering Joe is number 18! I thought it was funny when I showed up today, and saw that they are ALL number 18!

Daddy and Courtney, sitting feild side.

Kristen got ticked at something, that's what the tear was from, but was happy once she saw the camera!

It's so cute to see all of the kids out there playing soccer. Or at least trying!

Monday, April 27, 2009

A day at the farm

Today with PALS group, we went to a mushroom farm. The kids thought it was great! although Joe kept saying we were going to the sheep farm! I kept wondering if he thought that the mushrooms may make noise! It was fun and full of excitement. Actually I think that the kids were happy to be away from the classroom and play together at someone's house!

Sunday, April 26, 2009

Swimming In April!

Yes, we let our kids swim on our deck today! We filled the pool with warm water though. And they loved it! I can't wait till it's nice and warm everyday to help kill the day with water fun!

Saturday, April 25, 2009

Wondering when Joe will move back in!

Joe has now been living in the tent trailer for over a week now! I think it's so cute, how he thinks that this is his little home. I wonder when we actually take it camping how he's going to take us all moving in with him!!

We put all three kids on the trampoline today! They thought it was just great! Joe would jump so that Courtney could bounce a little bit! It's such a blessing to see the three of them playing and enjoying life so much together!

Wednesday, April 22, 2009

Courtney's first nite in her big girl bed

So after Courtney fell asleep, I did my traditional transfer after sleeping to the big girl/boy bed (depends on who it was...lol) and let them sleep. She may be a little shocked waking up there tomorrow morning, or happy to wake Kristen up to play with her...lol. So we'll see how she does. Well she needs to do well, because she's going to be kicked outta her crib in 6 mths anyways!!...lol.

I had the meeting with Joe's ABA today. And we are going to transfer him to their home program! I'm so excited! Less driving, less stress, more normal like days, more FREEDOM for all of us. They agreed that he's doing well and it may be a better fit to do the home program for all of us...well my family anyways. Another child coming and all of that driving! It's 30 minutes one way! But it was worth it for him to have the help that he's recieved thus far already! So May is his last month there while we arrange to have the new therapists put in place for June!

Tuesday, April 21, 2009

Joe went to soccer

Joe had his first day of Soccer today! He was so excited when he came home with his new little jersey! I'll post pic's later when I get a chance, that is if I remember...lol. He told me that he kicked the ball. I'll be so excited to see how he grows and develops and starts to get the idea of what it's all about!

Baby Kaden

I have to say that I am very sad to say that another CHERUB has earned their angels wings. Baby Kaden passed in his parents arms yesterday. http://kadenalexkuehl.blogspot.com/ I do not personally know this family, but have been following their blog daily. It's hard to read and hear of these babies passing due to the same condition as my daughter. It's such a hit and miss thing with CDH. Some make it some don't. 50/50! Why??!! That's the worse, no one knows. It doesn't matter of your history, race, culture, if it's a girl or boy. It just strikes whenever it feels that it wants too! My prayers are with Kaden's family.

Please keep the other CHERUB's in your prayers as well. It's not an easy battle for these young children!

Monday, April 20, 2009

She jumps on the trampoline!

We bought a trampoline last summer. My goal was for Kristen to use it for gross motor skills, Ok, I just really wanted one too...lol. Well, I tried putting her in it, and man, it was like shoving a cat in a bag! Not gonna happen! She has/had so many sensory issues that new experiences are quite difficult at times. I took her on it with me last year, and just had her sit on my lap. And she would scream! and yell, and cry! This year, Joe and Daddy were kicking the soccer ball on it together and she kinda showed interest in climbing up the step stool to get in. So he took her in. And she LOVES it!!! She runs around the outter edges and kicks and throws the ball, and bounces on her feet on it! I'm so happy, because the thing wasn't cheap either...lol!!

She suprizes me more and more everyday, with how she's changing into a more 'normal' child. People may think that it's weird to say that, but I'm ok with it. My children aren't typical, or normal. So when they do 'normal' like things I celebrate the small accomplishments that they do do!

Oh ya, she also climbed the tubes at McD's today too! Not much to everyone else, but HUGE to us!!!!

Saturday, April 18, 2009

Dance Dance

Joe and Kristen taking a break!

She found the other short kid in class!! Oh ya, it was her!

She's just checking out what these people are doing!

Joe just clapped right along!

The kids had their first day of Hip Hop today. I knew that Kristen wouldn't 'get' it today, but she did check out what everyone was doing here and there. Joe joined in and got bored with it after about 20 minutes. Oh well, they will get it more as we go!!

Friday, April 17, 2009

Mapping complete, well for now anyways

We did Kristen's mapping today. Everything is looking good, but after they took her in the booth she wasn't responding to the higher frequencies again. But it could take some getting used too for her to hear with these programs. We are also going to look at the new Phonak hearing aid for her too. Apparently they do have a stronger aid, and the audiologist had told me no not more than 2 mths ago. That anger's me. Even if we get 5-10 more db's that would be great!!! Ah, it's all politics and BS! But hey what can I say, they cover hearing aids until she's 5 years old anyways. And it sounds like there will be a new upgraded CI in the next year or so. Slimmer, so maybe lighter, and of course....costly!! But what does one do??!! We must help her get the most of the technology that she can!

Oh and I should add....that they do have adapter's for the stethascope so that the deaf can use them! I was so happy to 'hear' that...lol

Thursday, April 16, 2009

Mapping tomorrow!

We get to get some new MAPS for Kristen's ear tomorrow. (Kristen has a cochlear implant and these are just new programs to help fine tune what she's hearing) I'm excited, because after the last visit, she did so amazing as far as vocalizing, and comprehension.

I had a bit of a down moment on Tues while I was at the Dr's office. I have never thought or allowed Kristen's hearing loss to be a deficit. I have never thought that there is anything that she couldn't do like you and me. Just she has hearing equipment to wear. Well she brought me a play stethascope at the dr's office. I thought, this would be a good idea to get her one so that she won't scream when the dr's come at her with one! Then I went to put it on her....and realized...she can't use this. I know it's a toy, and I still put it on her, but it got me thinking! Could she use real ones??!! Could she be a Dr or Nurse when she grows up??!! It's the first time that I found something that she may not be able to do. It made me sad for the first time that she has hearing loss.

With technology the way it is, she can hear up to a mild loss. So she basically can hear everything like you and me! She can use the phone, listen to MP3 player's, or anything portable like DVD's! But she couldn't use a stethascope! I wonder if there are deaf dr's or nurses out there that work around this??!!

Wednesday, April 15, 2009

Our new OT

We met with our new OT today. She's really nice. I just want someone to be able to answer how do we get Kristen to Chew??!! I've tried everything under the sun to get the child to move food around her mouth! It's like pulling teeth...lmao. But really. She can only eat foods that will disolve in her mouth, or she can swallow whole, like rice. She doesn't even bite peices of things off! I have to break it up for her, otherwise she'll put the whole thing in her mouth even though it won't fit! It's one extreme to the next. We had such an oral aversion that she gagged on apple sauce, and now we can't get her to realize not to put so much into her mouth that she'll choke!

And to boot, our IDP consultant was supposed to be here at the same time as OT, and no-showed! It's not like it's the first time she's done it either! I feel like such an ass when I've told people that she's coming and she doesn't. I keep my days based around when therapists are coming to the house! Good thing it wasn't a complete waste of waiting and I had someone else here as well!

Friday we have more mapping for Kristen's CI! I get excited when we go because she can change so much from the littlest of tweeking! I also have some other concerns about the CI team. They are so inconsitant when it comes to what they are telling all of these families. I don't like to be the sqeeky wheel, but I may have to say something. But at the same time, I don't want to pi$$ anyone off. They do care for my child and her well being with her hearing. Argh! They joy's of being at stay at home mom! I look for trouble to cause! I need a job...lol

Tuesday, April 14, 2009

Baby's Heart beat

Well I heard our newest little one's heartbeat for the first time today! It made me so happy to hear it. It was hard to get the reading as I've got quite a bit of 'extra padding'...lol. I was also shocked at the reading for my blood pressure as well!! 110/70!! I haven't had that kind of reading since I was 19 years old! I've always had the high side of normal, or outrageous high normal when I'm pregnant. Maybe this baby is going to kick my body back to having the normal metabolizm I had before my first! Wishful thinking...lol. I haven't gained anything according to the dr anyways...lol. According to my scale and when I got pregnant it's been 4lbs. Not bad, but hey, I don't need to grow anymore!!!

Monday, April 13, 2009

Grandma was in town!

It sure was nice for my Grandma to be in town. She lives in Bella Coola, and doesn't make it down here too often. She was having cateract surgery done, so it was nice that the kids got to see her. She brought down all of their Christmas gifts as well. They couldn't believe it! She got Kristen the coolest doll! It's the same size as her....lol...I'll have to post pic's later when the kids are asleep.

Sunday, April 12, 2009

Easter Bunny showed!!

They just loved that it was scattered! Courtney started right in on the foil to get to the Chocolate! And after choking in it, and me fishing it out of her throat, she enjoyed what was actually inside!

The kids thought that all of the candy was soooo neat!! They didn't even care to look for the eggs that we 'hidden' around the house. They just wanted what was in the baskets!!!

Saturday, April 11, 2009

The Easter Bunny is coming tonite!!

I guess that I'm more excited than anyone that the Bunny is coming to visit! It may have to do with the fact that for the first time ALL of my kids can eat the candy. Kristen had such an aversion to these kinds of things last year that it would make your head spin!

Thursday, April 9, 2009

Group ABA or at home ABA??!!

After taking this week off with the stomach flu the pre-school has noticed a huge difference in Joe. The noticed after Spring Break as well. The difference, Joe's speech, interactions, and just overall being. They said that he is so much more interactive with his peers, and inititive taking. Now I wonder, do I switch from the Group program to the At Home program. The difference...the group program is out of my home, he gets more hours per dollar, it's 5 days a week, I only send him 4, it's 30 minutes from my house, and my son is extra tired, and has no time for regular 'play dates' The home program, is in my home....I don't like that , home is to relax, not to work, less hours, less travel time for me anyways...lol....and the kids...less money. It seems like it's a no brainer I guess when I put it like this though right??!! Well we have a team meeting on the 22nd of this month, and that gives us a week and a half to see how Joe changes at pre-school. I do think that we are probably gonna end up taking him out of the group program though. I just haven't really broke the news to Gary yet, I know that he's gonna be estatic about it!! He hates that place...lol...it's too bare and clinical, no distractions for some kids that get distracted really easily! But in reality, you must adjust for what the childs needs of the moment are and adapt to give them the best base for life. He does start kindergarden next Sept.

Wednesday, April 8, 2009

On the mend!

Well I think that we're all getting better now! Finally!! Now to play catch up on all of the house keeping that needs to be done! Geeze is this what happens when you leave the four year old in charge!!...lol. We still have taken the whole week off to recoup, and get ready for the Easter Bunny. I don't like that Joe and Kristen have missed so much this week, but we all need a break here and there. Too bad Spring Break was 2 weeks ago...lmao.

Tomorrow Kristen goes for a new ear mold for her hearing aid. I'm gonna find out what colours we can do. I've never done that before so we'll see!

Tuesday, April 7, 2009

Kristen's run with CDH.

Well I thought that since some friends that I have check my blog have kids or are going to have kids with CDH that I should share Kristen's story. I have to say that during the time that we went through it I didn't want a lot to do with anyone else and their stories. But now that we are living the aftermath with a 3 year old survivor, things somehow are different. I'm not afraid to network, and share. It was a difficult time for us. I will be the first to admit that I don't think that we took the diagnosis as seriously as it is. We thought middle of the pack, and we'd be home in no time. We had no idea how 'bad' it could really get. We didn't really believe when we were pregnant that we really could lose her. I did the 'research' online that I could, but never connected with anyone 'real' going through it or having gone through it.

I sometimes feel that now, I follow other's stories, journey's, and blogs, just to re-open all of the emotions that I went through then. I cry every time I hear of a CHERUB earning their wings. I have such anger, frustration, and so many more questions of WHY??!! I think that that is the reason why I have a hard time dealing with it. There is no one to 'blame' or truely explain 'why' 'how come' or who deserves this. I know in my mind that God only sends us blessings that he knows that we can handle. But my heart gets so mad at him for this pain that he sends these families, including my own. Don't get me wrong, I am sooooo greatful that Kristen is here with us. I am sooooo greatful that she can hug me everyday. But I get so angry that she has to deal with such adult issues at such a young age.

I'm not sure if this is going to be theraputic for me or not in sharing this in writing. I haven't done that yet. I do 'chat' online with other mom's in sharing experiences. Sometimes that helps, sometimes not. Well I'll quit rambling and here's a copy of Kristen's story that I wrote for a girl in Bristol that asked for shared experiences in CDH and used our story for her research paper.

We became pregnant with our second child in June 2005. We were very excited to know that we were adding another member to our family. Everything was on the same path during pregnancy as our first. The same problems I had, hypoactive thyroid, gestational diabetic. At the 19 week ultrasound the technician asked us to switch rooms, 'I'm new here and the equipment is different" she told us. So we switched rooms, took our ultrasound picture and went on our way. The next week I received a phone call from the Dr's office letting me know that the heart of the baby was shifted and we needed to go for a Stage 2 ultrasound at BC Women's and Children's hospital. We didn't think too much of it, as we knew lots of people that had been referred to Children's and had nothing wrong with the baby. We thought just precautions. At 21 weeks my mom and I went to the appointment. I didn't think that my husband needed to be there and take the day off of work just to go thru the questions.

I was wrong. They did the ultrasound and told me that my baby's diaphragm had a hole in it. It looked like there was liver up there on the right side. We went to lunch and then had the big meeting with the neonatologists and Dr's and support team. There was a thickening at the base of the baby's neck that gave them an indicator of a chromosomal disorder. We were told that with the CDH and a disorder that the baby would not make it past birth, it would be to weak with all of the other issues. They offered me amnio. I accepted. I have to say in the time of waiting for the amnio results, I had never wanted to spontaneously miscarry so much in my life as then. I didn't want to make the decision to terminate! I didn't feel that it was a right choice for me, and if the baby wouldn't make it past birth, was it worth to carry to term??!! We decided that if it was just CDH we would carry to term with the chances of survival that we were given of 50-85%. If the amnio came back positive, I still can't truthfully answer that question to this day!

After 2 weeks of waiting I was given the phone call at work, the amnio was all clear. Well all clear of the chromosomes that they check with amnio. And I was told....it's a girl. It was Kristen Marie Taylor!

There was lots of back and forth to the hospital for regular ultrasounds, and check-ups. I ended up with extra fluid, and measured 8 weeks bigger!!! Yikes!!! At 26 weeks my cervix began to shorten. I asked if I took it easy could I still work, I needed my 700 hours to get another year of maternity leave. They said yes. By 29 weeks my cervix was at 1.3 cm and I was asked not to work and put on immediate bed rest. I got my 700 hours and could relax. I had regular light contractions, but she hung on. I was also at a higher risk of pre-term delivery as my first son was born at 33.5 weeks, so I had a fear. The Dr's wanted at least 32 weeks out of me. At 35 weeks I was 4 cm dilated with big long hard contractions every 1 -1.5 hours that lasted 10 minutes!! So they admitted me to the hospital, as I live almost an hour from the hospital, and they wanted me close. 2 weeks later she came. Feb. 12, 2006 @ 8:59pm weighing...well they didn't because she was so fragile. They guess about 6.5 lbs. My water finally broke at 37 weeks 1 day, and two hours later Kristen silently arrived. They whisked her into another room to work on her. I told my husband to go and check on her. He said the room was crazy and there was like 20 people in there! They wheeled her into see me and meet her and whisked her off to the NICU.

Now the journey really begins!

The dr's looked at my husband and said it's bad, really bad. After they tried the conventional ventilator, oscillator, they moved her to ECMO after 36 hours. We never thought that it would come to ECMO. She chugged along, and after 3 days of ECMO I called to see how she was doing, and they had told me that she had a stroke in the occipulit portion of her brain. They checked the previous ultrasounds of her brain and saw the shadow there from earlier ultrasounds but it was small and easily overlooked. So they kept her going on ECMO. She suffered a blood clot in her left leg as well from a pik line. She slowly stopped peeing, as her kidney's failed due to the low blood pressure. That damn pulmonary hypertension. They tried to wean her off of ECMO after 7 days, but she reisited. She hated change and movement! So she was heavily sedated. On day 9 the dr said that they would repair the hole. Scary because of the blood thinner's that they use for the ECMO circuit. So away she went, and back she came with all of her organs where they belonged. Her liver and small and large bowel had herniated. The hole was big, and because she was on ECMO they used the gortex patch.

After 12 days on EMCO, she came off!! Still sedated to keep her comfortable and to keep from pulling all of the tubes out. We had still never seen her eyes open. I would go in and count the IV bags, and pumps, and asked her blood type....A positive. I needed something to hang onto. They had her name spelled wrong at first...Kristin. I didn't let them know until she was 5 weeks old. I spoke to the nurse and said, please don't think that I'm weird, but I didn't say anything before because it just didn't matter at the time, but her name is spelled wrong!! The nurse laughed with me and understood! She had it all changed by the time we came to visit next. Kristen was still on the dialysis for her kidney's. We spoke to the renal specialist, and she felt that if she didn't pee in the next day, that she may never do it with those kidney's. She felt the likeliness of her having a kidney transplant at the age of 2 was more than likely and it would be a miracle for her to use her own kidney's. She pee'd the very next day. Just a drop, but that was a start.

Suddenly when Kristen was 1.5 mths old we got a call that she had gone septic!! I didn't know what to do! We kept in close call contact with them and were told that she actually needed at PDA ligation. Wow, just another bump in the road. Kristen still was on dialysis and the vent. After the PDA ligation everything just started to fall into place. Two days later her kidney's began to fully function, so she came off of dialysis. And within that week, she came off of ventilator's!! We held her for the first time. She was almost 2 mths old!

She moved to the ward, on an NJ tube feed. They slowly switched to the NG continuous feed. Her reflux was something awful. She would feed and puke, feed and puke. I just wanted her home. They were worried to send her home with tube feeds, and the blood thinner that she was on for the blood clot. I assured them that I could do it. On Monday May 8,2006 I knew that the dr's did rounds on Mon's. I went and sat there waiting for the team. I told them that I owned her. And wanted to take her home. They asked the nurses that had worked with me in working with Kristen, and they assured them that I was capable of it. They said ok, maybe in the next day or two. I told them no, tomorrow! It's my Birthday! They said that they would try. Well they did it. I took Kristen home on May 9, 2006.

After she was home for a month she finally really pulled out her NG tube. So I left it. I fought long and hard with the dr's about the G-tube. I was convinced that it was her terrible reflux. I wanted stronger med's first. I prevailed. Kristen is a complete oral eater.

At 4 mths old they tested her hearing, as she was at risk with CDH, ECMO, the vent's, etc. She was hearing. At 7.5 mths old, we tested again. She was profoundly deaf in both ears. She got her first pair of hearing aids at 10 mths old, with no response. She was implanted with the cochlear implant at 22 mths old. It's amazing to call her name and have her come to us or turn her head.

We have had struggles with textures of food, but we're still working on that. She is developmentally behind, but on her own curve. She is small, but so is her healthy little sister.

During the actual time that we went thru the hospitalization with Kristen. I didn't want to connect with other families. I find now that it is more healing to share my experience and other families experiences as I've grieved her illness.

Kristen is a very happy little girl, and we are so lucky to have her with us!

Thank-you Bobbi Taylor (Her mom)

One thing the Dr's never prepare you for is going home. They prepare you for the surgery, the %'s of everything. But never what it's like to take a 'sick' kid home.

Getting the Easter Bunny ready

I get so excited for the small things in life! Well this is just the little fun bunny that comes once a year carrying lots of CHOCOLATE!!! I can't help myself. I got the cutest baskets for the kids this year. The girls has frills that come off after and turn into TuTu's!! Couldn't believe it when I saw them. And Joe get's a Spider man head. I had to hide the box of chocolate goodies from Gary, because I know that he'd nibble on it before the day got here. I love that Joe's getting the idea of what the holiday's are now.

Sunday, April 5, 2009

I think I'm getting the idea of this 'Blogging' thing??!!

I still am not sure what one writes on their blog. Is it like a dear diary??!! Or a hey everyone, this is what's new in our lives today??!!

Well I have finally almost finished the kids rooms. So I can post some pic's of them here. Well of course we all know that they're on facebook too. Is that normal to 'blog' and to 'facebook'??

Anyways, here's the pic's, I still have a little bit of organizing left, and some pic's to hang, but one can get the idea!

Saturday, April 4, 2009

All in a days work

So I'm so sick of my family being sick. I think that Gary is sick of it too! He says he figures that I've been sick for the last 2 mths straight now. Now Joe has the stomach flu! Geeze that's all we need is for Kristen to get it. She's skinny enough! Why can't people keep their kids home when they puke??!!

On another note, we moved our bedroom into our new room. We are slowly getting things organized and set, and de-cluttering. I bet if I went through it all in a day, we'd have a pick-up load to the dump! It's like I'm nesting now! A little bit early if you ask me...lol. I can't imagine how bad it's going to get at the end if I'm like this now! Oh well, getter done while I can!

I hate CDH

Another child has earned her wings last nite. Anika passed in her parents arms. I get so angry at this. Why are families losing their children!! Why do children that survive have so many challenges. Don't get me wrong, I'm so happy that Kristen is here with us. But why does she need to face so many issues at such a young age.

There are babies being born everyday with this, and everyday children are passing. WHY??!!! I may have my survivor, but for the families that children have passed it makes me sooooo MAD!!!! It's not fair. Sorry if this may offend anyone, but these are just my feelings as I have just read that Anika has gone. It may be different this time for me, because I met her mommy the day before she arrived. I follow blogs from everywhere, but this one was different. There was a hug, a touch, a conversation, a face to this journey.

Wednesday, April 1, 2009

April Fool's Day

Well today is Gary's birthday! Happy 37th Birthday big guy! I love you.
We also have Jasmine's birthday party to go to today! I'm so excited! I kept Joe home from class so that we could go, well we still could have gone, I just wanted to keep him home, so I did!
We moved Joe into his new/old room last nite. He sure has been possessive about it! Won't let his sister's in! Well we'll see how far he gets with that when he wants to go into theirs and the say 'no boys allowed'. Ah, kids.