It all starts next week!!

As most of you know, I have been looking for employment for 7 months now.....ever since I lost my job back in July. Last Thursday, I received a call from the site operations manager of a different Oncology group than the one I had worked for in the past. She had found my resume on careerbuilder back in November and held onto it in case a position in her office opened. I had my first interview on Friday, and the second one just on Wednesday. I START ON MONDAY!!! I am so excited to finally be able to get back to work and to be free from financial stress!!! We've made it this long, but it hasn't been easy on just one income. This also means, that Ryan will be starting daycare. She has never been before so I'm VERY nervous.....however, she will be attending The Kidz Club, which is the daycare that I posted about at an earlier time. Ryan seems very excited to go back and see her friends!! She also cannot wait to see the gold fish that they have again. I think at first I am going to ease her into it and have my mom pick her up a little bit later each day for the first week. My new hours are from 8:30-5 pm. Once she gets used to it a little bit better, she will be there full time.

giving herself a shot in the leg

this is her idea of a "pose"

wow.....almost all of her hair goes up....YAY!!!

Remember the obsession with spider-man that I told you about? Well, Ryan insisted on me taking a picture of the T.V. while the movie was on and she wanted him to be on the computer also. Here he is.....swinging into action!!!! (sorry it's blurry, he's VERY FAST!!)

Spider-man, spider-man, does whatever a spider can!!!

Oh the joys in life.

Josh is doing really well in school right now which is great!!! It's nice to see him trying so hard again after a few rough patches. He wasn't feeling well at all last weekend while he was here so he layed on the couch most of the time. Starting next weekend, we will have him 3 weekends in a row which is awesome!!!

no matter how old we get, playing in the bathtub is always fun :)

I hope everyone has had a great week and that you all have a great weekend!! I'm going to try really hard to get more pics of Ryan because I haven't had many lately. I just never think to grab the camera when I really want it.

It's always worse when a "heart child" has it.....

Has anyone ever told you this before? If you are the parent of a "heart child" I'm sure they have. I took Ryan to the peds office today because when she woke up this morning, her cough was TERRIBLE!!! She has had a runny nose for a couple days, and yesterday, she sounded a little congested, but this was different. She's NEVER coughed like this before. She sounded like a seal!!! Anybody know where this is going yet??

Ryan's peds office works in the way, that you never really know which doc you will see until you get there. You can always request a specific doc if you want, but to me, as long as they all really care for my child, it doesn't make a difference to me. So, at 2:30 today, Ryan saw Dr. Lacount. He listened to Ryan's chest and then heard the cough and just simply said "yup....it's croup." This really didn't surprise me because Josh also has it. UGH. Josh, however, was diagnosed about a month ago when his mom took him to the peds office. She said they gave him a steroid which ended up not working and he now is on another steroid that he takes twice a day and they have also given him an inhaler. When he was here this past weekend, his cough was still pretty bad and he was just under the weather in general. He didn't get up too many times from the couch. So there ya have it....Ryan has croup. What does this mean for a "heart kid?" It means that if Ryan's O2Sats go below 92, she should recieve oxygen. Her cardiologist needs to be made aware of that anyways because 97 is her "normal" so anything below 92 is a concern anyway. We have to carefully monitor her breathing while this nasty cough consumes her. If she seems like she is struggling to breathe (any more than normal) then he said to take her into the bathroom, turn the shower on as hot as it will go and let her breathe in the steam from the room. Once we've done that for about 5-10 minutes, if she is still having problems, take her outside. He said sometimes the fresh cold air will help open the airway. If neither of those work, she needs to go to the emergency room. He did also tell me that 95% of these "heart kids" that end up with croup, have at least one emergency room visit within a month. Dr. Lacount also said this will probably last that long. GREAT!!! It just keeps coming. They gave her Decadron before we left (a small dose of liquid steroid) and said that is all she should need. If for any reason she starts to turn blue, we need to just go straight to the ER...which I would do anyways.

This is how our day was.....how was yours??

Why blog??

First of all, I have to thank Shannon Carter (www.thecarolinacarters.blogspot.com) for the idea behind this post. She too did a post like this and I thought it was great to let people know why we share our personal lives and the lives of our children with anybody who wants to read.

So, WHY BLOG? Why put my life on the internet and the life of my daughter?

ONE WORD FOR YOU....... HOPE!!!

I blog to spread hope. To let other's know that they are not alone. To educate someone on the effects of CHD's and what it REALLY does to people. Not everybody know about CHD. I didn't know anything about it until Ryan was diagnosed when she was a month old. Since then, I have learned more than I could ever imagine!!! The most important thing that I have learned, is that I am not alone on this lifelong journey with my precious baby girl!! Other's feel the way that I feel and have good days and bad just like me. This is why I blog.....what about you?

Onto Ryan's appointment today. We got to the hospital 15 minutes early as it is always requested. We got Ryan checked in to see ENT and we sat......and sat.....and sat some more. We now fully understand why it's called a WAITING ROOM!!!! UGH!!!! ok..sorry about that...pent up anger!! So, after about 30 minutes, we FINALLY got called back. After we got into the room, the nurse asked if we had any issues with the tubes in Ryan's ears so far and then she said Dr. Myer would be right in. As soon as she left, Ryan told us she needed to go potty. I took her down the hall, and on my way back, I passed Dr. Myer in the hallway and he smiled and said he would be right in. Today's definition of "RIGHT IN: I will get to you whenever I have a free minute LITERALLY......ONE MINUTE and that means I will come into the room to see your daughter in about a half an hour!!!" eeeks.....more anger coming out.

There you have it. We waited ANOTHER 33 minutes to be exact for Dr. Myer to come in...meanwhile, Ryan went potty twice during that time...she is doing SO GREAT!!!

Anyways.....onto what was discussed. Ryan of course, screamed her head off as soon as the doc came into the room. He looked in her ears, which required us holding her down, and said everything looked great!! The tubes are still in placing and doing their job. When he looked in her throat, a different story. He said her tonsils are moderatly larger than they should be. Not average, not HUGE, but too big for her throat. He does believe this is what is causing her to snore and stop breathing several times during her sleep. (she does this during naps and at night) He said he DOES want us to speak with pulmonary medicine about them doing the sleep study. This means, we have to do a consultation, then schedule a night to stay at the hospital. We have to arrive at about 6 pm and then hopefully have Ryan asleep by 11. I'm not sure how it's going to go since she will have stickers ALL over her body. Her head, ears, face, arms, chest, legs AND feet. RIGHT....ALL OVER!!!! I am going to try to make it as pleasant as possible. With her recently found LOVE for spider-man, I'm hoping to get her excited about it by telling her we are going to have a popcorn and movie party at the hospital with stickers?? I hope it works. I spoke to pulmonary medicine today and they said it will take 4-6 weeks to even get the consult. Ryan is scheduled to see Dr. Myer again in 4 months. So to recap the check ups, cardiology is on June 7th and ENT is on June 26, and then a sleep study before all that. GRRRR......it is all very frustrating!!! I hope this whole ordeal with the sleep study is worth it. I really don't want her to have to go through anything else, but it's one of those things, where you don't wanna go through all the trouble of the study for nothing....does that make sense?

Potty training update

I'm sure some of you have been wondering how Ryan's potty training has been going. Well, it's been AMAZING!!! She is doing such a great job and is such a big girl. Today was her 4th day in big girl panties and, just like yesterday, she only had ONE accident!!! She get's so excited when she goes on the toilet and she starts clapping and yelling!! I'm so glad to get the diaper thing over with. She is still wearing diapers for nap and bed time though. For the past 2 days, after nap, both diapers have been completely dry. Her diaper this morning, which she wore to bed all night, was only a tiny bit wet. I cannot believe how well this whole thing is going and I couldn't be more proud of her. She is just so awesome!!!!

One thing that is NOT so awesome is the amount of snow we got this week. It all started Sunday night and it didn't stop really until this morning. We had a few breaks here and there but that was it. We are even expecting some flurries overnight tonight as well as some ice. I am so sick of this weather and cannot wait until it gets warm again!!!

our deck....at one point in the middle there is 2 1/2 feet...YIKES!!

I want to say thank you to all those who prayed yesterday and today for my family. My previous post was about my cousin's son and he is doing well. He was actually released from the hospital last night and is getting some follow up care. I am sorry for not going into more detail about what is going on but it is a private matter. But thank you all again, SO MUCH!!!

Ryan has her follow up appointment on Monday with Dr. Myer. He is the ear, nose and throat doc. He will check her ears to make sure the tubes are still looking good and doing what they should be doing. She will also be getting a hearing test done. Since her ears were so infected and for so long, he wants to make sure it did not cause any long term hearing damage. She doesn't listen very well but I don't know if it's because she cannot hear or because she just chooses not to. HAHA. Either way, please hope and pray that her hearing is not damaged and that she just doesn't want to listen to us. :)

Dressed in Jay's boots, hat and gloves

We have a new obsession going on in the house also. It used to be dogs, then spiders, then Dora, then Sponge-bob AND NOW.......SPIDER MAN!!!! You would think that we have a boy with how much she talks about her beloved spider man. She says "spider-man does this...." and she sticks her hand out really fast and makes the noise like when his web shoots from wrist. TOO FUNNY!!! Every day she wants to watch him and she gets MAD if she can't. She also has tried to climb the walls a few times but soon realizes it's not as easy as he makes it look.

just got done going potty!! YAY!!!

I hope everyone is having a great week!!! If I don't update before Monday I will let everyone know how Ryan's follow up appointment goes. Jay and I are both not feeling well so I'm not sure how much energy I'm going to have for anything, especially with running around with Ry all day. :)

In need of URGENT PRAYERS!!!!

I would so greatly appreciate it if everyone could please pray for my cousin, Kate's son. He is at Cincinnati Children's Hospital right now and we're not sure if he is coming home tonight or not. I cannot disclose why he is there but please just pray for him and his mom!!!! They are SO CLOSE to us and we are very worried. Please say prayers for them all!!!! THANK YOU SO MUCH!!!

The new Kidz club.....

A friend of mine from high school's mom got a hold of me on face book and sent me a message that amazed me. She told me that she is a nurse at a daycare that has a new location in my area. The day care just opened on December 21, 2009. The name of the place is The Kidz Club. I was so excited when she told me about this place because it is different than most. This particular daycare is for medically fragile children. The staff consists of RN's and medical assistants. They accept kids with all sorts of medical needs. The web site is www.thekidzclub.cc if you would like to check it out. I just loved the fact that they opened a place like this. Instead of sending your child to just any daycare, you can feel better about it because your child is in the hands of certified health care providers. I am going to stop by one day this week and take a tour of the facility. I would love for Ryan to be able to get involved with other children and just get a taste of what "school" is like. The other great thing about it is the fact that the facility takes insurance. Your child's health insurance dictates how much the fee's are. I thought I would share this info because it is HEART DAY!!!! It's so great to see that other people think about parents needs as well as kids when you have a different life. I will keep everyone posted on how the tour goes. I'm not sure when it will be because we are supposed to have 6-8 more inches of snow by tomorrow.

OTHER NEWS!!!!! I am so excited to say that potty training is OFFICIALLY UNDERWAY!!! We put big girl panties on Ryan at about noon today and she did AMAZING! She had a few minor accidents and that was IT!! At one point today she looked at Jay and said "daddy, I poo-pooed." He took her back to the restroom and sure enought, poo-poo in the panties. He put her on the potty though and she finished her business there. Another time she barely tinkled in her panties and then she realized what she was doing so she stopped and held it until she was on the potty. I'm so excited to get this going and am so proud of her for doing such a great job!!! I will keep you all posted on this too!!! Hopefully I will have some good pics with my next update!! HAPPY VALENTINE'S DAY TO EVERYONE.......BUT MORE IMPORTANT....HAPPY HEART DAY!!!!!

A good ole' Kentucky blizzard...

For those of you that are not familiar with the Northern Kentucky area, several INCHES of snow is a lot for us. Typically, we get a few inches and then it melts, and then we get a few more. This past weekend, we got about 4-5 inches. On Sunday, we heard on the weather update at our local news station that the snow would start last night at midnight and not stop until Wednesday afternoon. The entire tri-state area is on a winter storm watch until then.

Starting last night just before midnight and going through today, we now have about a foot of snow on the ground in most spots. It has only stopped snowing today for about an hour and we are expected to have another 3-6 inches by tomorrow. This is A LOT of snow for us to have all at once. Why not have some fun???

Ryan and me on the 4-wheeler (with a plow on the front)



Ryan in the snow. She could barely walk in it. HA

Daddy having a "heart-to-heart" with Ryan about eating snow

We had tons of fun in the snow today and we were outside for about 2 hours straight!!! It was cold but very fun. Ryan doesn't like coming back in at all!!! Jay was home today because since he works 2nd shift, they closed down early at his work so he didn't have to go in. MORE FUN FOR US!!! Tomorrow, he will probably have to go in but I'm sure at least me and Ryan will be back in the snow. She just loves it SO MUCH!!! I hope everyone is having a good week so far!! It's movie time for the family.

CHD Awareness Week....

In honor of CHD awareness week (February 7-14 2010) let's talk about what CHD really means.

Having a baby is the best time in any family's life. But, what happens when that precious baby that you have is born with a heart defect?

Ryan Sue Sweeney 8 lbs. 7.4 oz. 20 inches

This means that your life is turned upside down. A huge amount of emotions go through your mind all at once, and you're left wondering what to do next. Will my baby live? Will my baby die? What exactly does this mean for my child?

It means life will be drastically DIFFERENT.

LIFE will turn upside down and everything changes. Having a CHD child means having a "new normal."

Ryan and mommy (almost 5 months old)

CHD means family coming together in serious times of need to be there for eachother as your child grows and thrives.

Ryan-8 months

Having a child with a heart defect affects the whole family. Parents, siblings, grandparents, etc. Everyone travels on this journey TOGETHER.

Ryan and her "Bubba"-10 months old

Having a child with heart disease means wondering if birthday's will come? Every birthday that comes is a HUGE celebration. The feeling of your child making it another year is unlike any other feeling.

Ryan's first birthday!!

The "new normal" becomes hospital visits and stays. It often involves wondering when your child's next surgery will be instead of when they will walk or ride a bike.

Ryan and mommy-before consultation for first surgery

Hospitals become your new home away from home. And some kids, spend more time in a hospital bed then their own bed at home.

Ryan-January 9, 2009-cardiac cath and balloon dilation

Having a child with heart disease, means surgical procedures not going as planned. It means more invasive things are to come. It means your child going through things you NEVER wanted for them or for yourself.

It means family time becomes more special than ever.

Ryan and Jay (daddy)-Summer 2009

Being the mother of a CHD child has changed my life FOREVER. I have support from people that I've never even met. I never knew anything about this disease until my daughter was diagnosed at one month of age. I've never been so grateful in my life. Every day with Ryan is more special than the last. She is my LIFE. She is my CHD SURVIVOR!!!

Ryan swinging at the park-Summer 2009

Ryan's 2nd birthday-December 13, 2009

SO happy to see this!!!! HAD TO SHARE!!

Before I get started on what this post title is all about, I wanted to just share a couple new pics.

she is trying to get undressed but when she goes for the shirt, she always gets it stuck....she will learn eventually!!! :)



my cutie patootie sleeping on the couch. too cute!!

Ok....here it goes. I got the February issue of American Baby magazine in the mail today. I have no idea why I even get these magazines because I never signed up for it, but it got delivered. Of course, I flipped through it and when I came to page 22 in the BABY Health section, I was floored!!! It's not a big article, but THERE IS AN ARTICLE ABOUT CHD's!! WOW!!! This is amazing news because we all know that there is really not much talk about it. The article also mentions Cincinnati Children's Hospital. Here is the article:

Heart Smarts:

Each year, 36,000 babies are born with heart defects. But even kids with healthy hearts can develop cardiovascular disease later on. Keep your baby healthy with these tips from Elaine Urbina, MD, director of preventive cardiology at Cincinnati Children's Hospital. It's the ultimate Valentine!!

Limit daily juice intake: Give no more than 4 ounces of 100% juice.

Serve toddler size portions: This means about a quarter of the adult version. Good examples: a half-slice of bread, 1/4 cup of cereal, 1 oz. of meat or cheese, and half an egg.

Turn off the T.V: Instead, encourage 20 to 60 minutes of daily active play.

Don't light up: Harmful toxins can linger on clothes and skin.

Talk to your pediatrician: Let them know if you, your spouse, or any of your parents had an early heart attack or stroke (at or before age 55 for men; 60 for women). Your doctor may also recommend that your child drink low-fat milk rather than whole milk.

I know this article is geared towards people whose kids do not have heart disease but I still thought it was important to share this information. It was also nice to even see the words "heart defects" in the mag. This could be the start of more info to come and it could also be the start of more information being shared with the world about this horrible disease that is responsible for taking the lives of so many innocent children. Please pass this information on to anyone that you think could benefit from it. Thank you!!!!

Hello everyone!!!! I just wanted to let everyone know that we OBVIOUSLY have a make over on the page, but that we have a new button as well. Grab it for your blog!!!

I wanted to share a picture that Ryan drew also. Jay was drawing hearts for her and then he handed her the pen, and this is what she came up with.....I'm SO PROUD!!! It actually looks really good given the fact that she is only 2!!! LOL

I hope everyone is having a good week so far even though it's only Monday.

Please keep Logan Jack's in your prayers!!! He had surgery 2 weeks ago and now, for no known reason, is having high fevers!! Visit his page at www.whenlifehandsyouabrokenheart.blogspot.com

Our prayers are always with you Stef, Ryan, Wyatt and Logan!!!

Another hospital stay coming our way??

Wow, I feel like it's been FOREVER since my last post. Sorry about that, I've been a little busy. My dad had surgery this past Thursday to have his gallbladder removed so I spent the day at the hospital with him, and then he stayed with us that night since he wasn't able to drive. He is doing well and will be able to return to work next week.

Ryan has been up to no good lately. As usual right?? YUP. I unloaded the dishwasher the other day, then went to start a load of laundry. When I came back upstairs to load the dishes into the washer, this is what I found.....

LOOK....there's a baby white tiger in the dishwasher!!! WOW!!

I asked Ryan why her tiger (whose name is Kitty Cat....ORIGINAL!!!) was in the dishwasher and she just shrugged her shoulders and RAN RAN RAN!!! She thought she was in trouble. As long as the dishwasher didn't run through a cycle with Ryan's beloved kitty cat, it's no big deal.

little ms. guilty face running away from me!!

When Ryan had gone to get her tubes put in her ears, Dr. Myer, had asked me if Ryan snores when she sleeps. YES, she does. He then asked me if Ryan stops breathing in her sleep or if it seems like she has breath holding spells in her sleep? YES, she does. He asked if she has ever had a sleep study done? NO, and why is this necessary?? Dr. Myer suggested that Ryan get a sleep study done to test for apnia. From the way he made it sound, he things it's tonsil related, not heart related, HOWEVER, if she is having trouble breahing in her sleep, not matter what the cause, it isn't good for her "cardiac status." Ryan's peds office sent a referral form to pulmonary medicine in the hospital for the sleep study. I called and spoke with them, and for the study, they want at least 6 hours of sleep from Ryan. That is next to impossible for her. She only sleeps in her bed, or sometimes will fall asleep in the car or on the couch. I really don't think they will be able to get 6 hours out of her. Ryan is scheduled to go back to CCHMC on the 22nd for a follow up with Dr. Myer from her tube surgery. One we are there, I am going to discuss it further with him and find out if the study is really necessary or if he would consider just taking her tonsils out. I'm not sure where that conversation will end up, but I will keep you all posted.

Please say a prayer for the family off Jeffrey Fite today. It was one year ago today that Jeffrey was in the car accident that changed his and his family's life FOREVER. Jeffrey was driving and slipped on some black ice. His dad and my dad used to work together and are pretty good friends. That is how I came to know Jeffrey. Please stop by his carepage and drop off some prayers. The link is on the right side of this blog under carepages family. I'm sure today is not an easy day for any of them. Thank you and I hope everyone has a good week!!!