Been a While

It has been quite a while since I have posted on here.....mostly because I forgot the password. lol

So much has gone on since my last post. We lost my husband and father of my children to suicide, in August 2010. It has been a very trying year, but I think things are finally starting to look up. Kyler had his Fontan in June, 2011 and, minus some bumpy first days and having to be re-admitted for fluid on his lung, he did really well. These last few months have been trying to get him back up to baseline on feeds and back into all of his therapies. Money is always tight, but we manage and we are together.

I am dating someone now.....I finally feel like I am at a point in my life where I have healed enough to start moving on. Rayan will always be my first love and my soul mate, but I refuse to live in sorrow my whole life. The man I am dating is wonderful! He is great with my kids and an awesome father on top of it all! He has 2 boys and they get along pretty well with my kids. They are comfortable with Kristina and love being around Kyler. Which makes it really nice! It has been a long time since I have felt like this about a man and to tell you the truth, it feels great!

We are in the process of trying to find a new place to live. We don't have to move from where we are now, but the opportunity has come where I can try to find a place to live in Riverton. I have wanted to move my family there for a long time now, and I am hoping this is IT!

I am also back in school (again) haha. This time I am working towards the nursing field. Kyler has really prompted my move in this direction and I am hoping to open a special needs day care when all is said and done. In the time I have been on my own, raising my kids, I have come to realize that so much is different. Finding a babysitter for Kyler is a, almost, non-existent thing. The sitter has to have some many things and has to know so much that it is just not worth it. I want to give parents with special need children the ability to go out and know their children are being well taken care of. This may be a few years in the making, but it is my goal!

Well, time to get back to the homework. thanks for taking time in your day to keep up with us, and I promise to work harder on updating more often.

Love,

Nicole

from then til now

Well, since my last blog we have had a few things going on. First, Kyler went to Card's a few weeks ago. His heart rate was not where she was expecting it to be, so she ran an EKG on him to ensure his rhythms were in tact, and they were. We have another appointment in October. She is wanting to get him as close to 3 as possible before she adds him to the list for his Fontan. I, personally, can wait as long as his heart will. The thought, stress, sadness, anxiety as well as 50 other emotions that run through me during ANY of my kids' surgeries...is something I can wait for.

Kristina and Kameron have been seeing a new counselor and I really like her a lot. The kids open up with her and I have not had any issues with Kam clamming up during a session, he actually talks!

Kyler celebrated his 2nd birthday on July 19th. A day that I have waited for. I have also noticed that I have more happiness when my other kids' birthdays come around as well. I am SO thankful they are all here to celebrate life! We are having a birthday party for him this Sunday at my sister's house in Lehi......we had to postpone his party that was ON his birthday because he, as well as myself, Kameron & Kaide got sick. As it turns out, we all had the Kosaki (sp?) virus. I was not aware that I could get it (I thought only kids got it). Kyler got it the worst, OF COURSE! He ended up with huge sores on his tongue and his breath smelled like dog poop! (Yes I know, graphic, but I had to explain to everyone what his breath smelled like.) It was NASTY and I tried to hold my breath as much as possible when his face was close to mine. I know, sounds rude, but trust me, IT WASN'T. =)

We have been camping twice in July. Once was for the weekend up to Soapstone. Kyler, however, stayed with my mom. They had a good weekend. As always, I came home and my mother had rearranged the kitchen/living room and gone through things. She thinks that just because I am not home to see what she is throwing out, I won't know it is gone. However, it is MY HOME, and MY THINGS, so I think I will notice what she has messed with. I love her, but it makes me really mad when she does this.
The second time we went camping was with Russ, up to Pomerell (Idaho). It was Russ' family reunion. Kyler did not do so well with the elevation change, as I suspected he wouldn't. We only stayed one night and it seemed the morning after we came home he was doing 100% better. He was also suffering from hand, foot & mouth while we were up there, he was miserable. I am hoping that we are getting all of the virus' and flus out of the way so we can have a healthy winter! HAHAHAHA.....wishful thinking.

Also, I want to tell our wonderful friend, Courtney and her husand, Ben, Congrats! They just had a baby girl a few days ago and I know she is going to make a wonderful mom! She was AWESOME with Kyler in the PICU. SO, CONGRATS guys! =)

Well, I have more laundry to get done. I also need to try and find a car. Mine isn't going to last much longer. =( FIRST, I need to sell my Bravada though. =-)

Kyler's B-Day Party

I am in need of ideas for where to have Kyler's b-day party. He is about the level of a 1 year old, but he is turning TWO! I would like to have it outdoors......was thinking about the zoo? Any ideas would be welcome!

THANKS!

Still trying to figure this out!

Okay, I have seen a lot of things on other blogs that I would love to add to mine, but have NO idea how. Like the Hypoplastic Left Heart Links and pics.........I have seen things at the AHA website that I would like to download here too. HOW DO I DO THIS? HAHA No I am not a TOTAL computer idiot, however I have NO idea about this blogging thing. I did find a new background that I love....but I would like to add other things as well. Please email me at kcole882020@yahoo.com if you have any info for me! THANKS!

It is confirmed

Well, we have been confirmed.....it is Swine flu. It turns out that it started with Kam on Sunday, Kyler got it Monday and today it is Kaide's turn. He woke up with a fever of 102 and isn't feeling well at all. I think I have had about 6-7 hours sleep in the last week. Okay maybe more like 10....but it doesn't help when I am getting that in 2-3 hour increments.

Kyler is starting to act a little better. Hopefully this passes quickly through our house. We picked up our meds today from the drive thru at Walgreens and now we are in the house for the next 48 hours. I will probably go crazy by then because of this weather and the fact that even if I wanted to go out, I can't. LOL

Russ just happened to miss this virus. He left for Wisconsin last Saturday for his 2 weeks of annual training and will miss all the fun! He has been really worried and it sucks because he is there and we are here, so he cannot help. He is worried about the kids and my pain and lack of sleep. I love him a lot. He was tested today for Swine just to ensure he was not carrying it and did not have any symptoms....he came back healthy. =) That is good to hear since he is still going to be gone for another week.

Well, I am going to go try to take a nap while Kyler is asleep. I have a feeling that tonight Kyler will be fine in his own bed (for the first time this week) and it will be Kaide that will be sleeping in the living room with me. =) I love my kids so much! I hope they get feeling better soon.

Sick

Well, Sunday night Kameron came down with a fever and was acting pretty ill. I kept a close eye on him and Monday morning he was acting like himself again. However, Kyler started with a runny nose and by Monday night it had turned into a fever as well. Yesterday he seemed to be okay, other than the fever and runny nose. That was until his dry nose turned into a bloody nose. With his cough, runny nose and watery eyes the bloody nose kept up all day. It was not so bad that I needed to rush him to the hospital, but was enough to keep me on my toes to ensure he was not swallowing it and it wasn't getting anywhere. By last night he was grumpy, feverish and not himself. I put him to bed a little after 8 and he was OUT. However it did not last long. About every hour he was up crying. Mostly because he was coughing and it was hurting his poor little throat. Finally at 11 I took him out of his bed and we went into the livingroom to lay. Yeah, BAD IDEA! He knows the television is in the livingroom and when in the livingroom he wants to watch tv and NOT sleep......About 1 I attempted to put him back into his bed. Yeah, that wasn't flying with him. haha

He stayed in his bed long enough for me to catch a hot bath and try to relieve some of the pain I was in. I really need answers as to what is wrong with me....the pain is getting horrid. They say it is Fibromialgia, but I am not sure what to believe anymore. I have had test after test done and the only reason I have not had the final test done, a spinal tap, is because I cannot find a doc that will do it with my insurance. Anyways, the bath usually helps, but last night it did nothing, if not made it worse. Kyler was up no sooner had I gotten out of the bath. Back to the livingroom we went. This time he was watching tv whether I wanted to or not. haha He started turning the tv on and off and playing with the vcr. I think he is smarted than he wants to let on, but if he shows me that he can do it himself then I will know he is capable and he likes mommy waiting on him. LOL =)

Kyler and I went back to bed about 5 am. Kyler in his bed, me in mine, with the baby monitor on loud and close to my head. He slept until 7 and my awesome kids took him into the livingroom to play and let me sleep til 10. I woke up to the same pain I fell asleep to, just not as intense. The only reason the kids woke me up is because Kyler needs his meds at 10:30 and they know how important they are to Kyler.

Well, I got up and immediately called his doctor's office to try and get in today. We had an appt at 12:40 this afternoon. They are running Kyler's mucas and blood for Influenza A. IF that comes back positive then he will more than likely have the Swine Flu. I was told today that MANY people have had it and did not know it. It is hitting teenagers harder than younger children. Most kids are getting high fevers, stomach cramps, sore throat, vomiting, diarreha (sp?) etc......the symptoms mimic that of Influenza A. The biggest thing they worry about is dehydration and fever. If Kyler is not needing more than 1 liter of oxygen, continuing to hold down MOST of his g-tube feeds and is still able to crawl around and be a but active then we will not need to be admitted into the Children's Hospital. YIPEE!

Well, it is time for Kyler to eat again before bed. Pray this is just a cold! =)

My first Blog~

Well, I have decided to make this blog up instead of leaving the other children out. They all want their time in the spotlight, and this way, while telling you all of our journey with Kyler and HLHS, I can tell you of my children's journey as well!
Kristina is my 13 year old daughter. She was born to me as a single mother, only being 18 years old. She was my sidekick, every together, always together. Her nickname was goldilocks because she had beautiful blonde, CURLY, hair. She was always a bright child, learning to speak at a young age, potty trained herself before she was 2 and has continued to excel. She will be going into 8th grade this next school year.

Kameron is my 10 year old son. He was born about 10 months after I married Kristina's father. He was such a ham growing up and always seemed to be Kristina's partner in crime. I have pictures of Kris putting stickers on the walls and Kam just watching her, almost as if to say - WE ARE GOING TO GET IN TROUBLE SIS! =) He is going into 5th grade this next school year and I think he will follow in my love for math. Kameron is ADHD/ODD but has a heart of gold. He also suffers from severe asthma and takes medication daily to help control it. He loves to help his baby brother and loves to make him laugh.

Kaide (pronounced kade) is my 7 year old son. He was born a little over 6 years after his older sister. He was always one to find a way into the things he was not supposed to be in. Like the cat's litter box.....EEEW! He loves to disappear when playing outside and hates being grounded because he forgets to tell me where he is going. =) Kaide has anxiety and hates being left alone for any amount of time, but we are working on it. He is a great helper and earned many awards for helping others this last school year. He will be going into 2nd grade. Kaide struggles to read, but has made EXCELLENT progress and we will continue to work on this area with him. This summer will be a great one to spend time at the library and in the park on a blanket, reading.

Kyler is my youngest son. He was born July 19th, 2007 and diagnosed shortly after birth with Hypoplastic Left Heart Syndrome. During the course of his first hospital stay (birth to Oct 3rd, 2007) he endured 3 open heart surgeries, 2 strokes, 2 stomach surgeries (one to perfom the Nissen and place a G-tube for feeds and another to stitch back up his incision that came open 2 days after surgery for the g-tube and nissen). Kyler was hospitalized several times between his 3rd and 4th open heart surgeries. Most for viruses that went into his lungs and caused difficulty breathing. He had his 4th open heart surgery in April of 2008 and just recently had a sedated echo. The echo showed good function and his doctor was happy with the readings. This is great news for us!

Well, that is it for tonight. If you would like to read everything from the beginning of our journey with Kyler up until now you can visit his care page at carepages.com with his page name being kylerlynn. All one word, no spaces.