Tuesday, December 8, 2009

2 years ago.....Sunday???

So, as most of you already know, my little princess will be 2 years old on Sunday. We have so much going on between now and then that I decided I will give my birthday tribute to Ryan now....what's a few days going to hurt?? We are having 2 birthday parties this weekend for Ryan to split up the amount of people. I know it sounds crazy but I'd rather do that then try to fit everyone in my house at one time. That would equal out to be almost 60 people. Last year for her first birthday, we had 65 people but we had rented out a clubhouse to the condo that my uncle owns. That was a lifesaver.
Ryan's medicine is doing it's just it seems because she is looking much better. Her 2 year well check up is Monday so we will see if the left ear infection is clearing up. The skin infection looks much better and with the help of our good friend Mr. Neosporin, the scab on her nose is almost gone now!! Her nose is also not running as bad as before. YAY for Ryan!!
So, here we go!!!
On December 11, 2007 I went to my last doctor's appointment as a pregnant woman. My due date was actually on the 10th but those are never accurate anyways. :) I had received a second ultra sound 2 weeks prior to get an estimated fetal weight because I had gained 65 lbs. They knew I had a big baby in there and needed to get an idea of what they were working with. At that appointment, the doctor told me that I was getting induced and told me to check myself into the hospital that evening at 6 pm. I was also informed that I should eat a really good meal before hand because once in labor, all bets were off. And, most of you know that you DO NOT tell a woman that is 9 months pregnant that she cannot eat!! That's just wrong on so many levels. haha. My mom treated Jay and I to Olive Garden that night and when we left, we went straight to the hospital. I was so nervous and anxious and just couldn't wait to meet my sweet little girl. I was just dying inside to see what she looked like!! When we got to the hospital, we settled in and just waited...and waited.....and waited.
At 8 am the next morning, December 12th, I was started on the I.V. drip to induce my labor. At 9 am I was considered to be in active labor. I remember thinking "wow...that was FAST!!!" My contractions were very strong and I was in a lot of pain, but I wasn't dialating. At noon, the doctor's broke my water for me to see if I would progress any. I received my epidural around 6pm and then we waited some more. I didn't know what was taking so long but I didn't like it. I was so miserable. Finally, at 1:00 am...yes....the NEXT morning, I had just hit 9 cm. The doctor told me since Ryan had been without fluid and that she hadn't dropped at all that the best bet at that point was to deliver her via c-section. Woo Hoo....let's just get this over with!!! I was disappointed that I wasn't actually going to "give birth" but at the same time, I just wanted to see her. I agreed to surgery and within 5 minutes, nurses and doctors were coming in to prep me. I went back to the operating room and got strapped to the table. (which by the way is a very scary feeling knowing that you cannot move because of the meds, and then having your arms strapped down also) The surgery started and I didn't even know it....I didnt feel a thing. But I guess that's the point right?? lol. At 2:14 am, I heard the cries. The most amazing sound I've ever heard in my entire life. The nurses took Ryan over to the table to get her wiped off and make sure she was ok, then told Jay to get her and bring her over for me to see. We both had tears of joy streaming down our faces. When I looked at her for the first time, I knew what true love was. She was BIG, and beautiful, and PERFECT!!!!
TO RYAN:
You are my everything, my whole life, and my precious gift. You will never in your life know just how very much you mean to me. You have made me so much more than I ever thought I could be and for you, I am forever grateful. You have brought a light to my life that I never knew could exist. Every day with you is truly a blessing and I couldn't ask for anything better. I cannot believe you are (almost) 2 years old. Time goes by way to quickly. I look forward to times when you are older, like your first day of school, your first sport that you try, and your first school dance. I cannot wait to share those special times with you and help guide you along your journey through life. You were born with a VERY special heart, and sometimes things that you will go through may not always seem fair, but GOD made you this way because He knew just how strong you would be. You have endured A LOT in your 2 years of life and will continue to go through many more things. Just know that I am ALWAYS here, holding your hand along the way. You are the BEST gift I have ever received and I thank GOD every single day for bringing you to me. Please know just how much I love you and care about you.....you are my everything princess!!!!
*wiping tears away* WOW....this is harder than I thought. I actually just took a 15 minute break in between these 2 paragraphs. I have added some pictures for all to see of Ryan when she was born, and a couple when she was just a few months old. I cannot believe how big she's gotten and how smart she is!! She really amazes me EVERY day!!!



Ryan Sue Sweeney 8lbs. 7oz. 20 inches long



sleeping beauty.....so precious



born on December 13, the 12 days of Christmas baby!!



just over a month old


almost 4 months


Oh how things change. I remember how much she loved that excersaucer. That was the best thing in the world to her!!! Now, she gets really happy when I paint her nails....haha. She is the love of my life and I am so blessed to have her.


I will update again sometime next week with pictures from the birthday bashes!!! I hope everyone enjoys the rest of their week and has a GREAT weekend!!!










Sunday, December 6, 2009

It just keeps on coming.....

Geez....sorry it's taken me a while to get back to the posting. Been pretty busy around here. Let's get down to it....Ryan's appointment went GREAT!!! We got to CCHMC on Friday morning hoping for the best and that is what we got. Ryan's gradient was 39 and is now 40 which is worse but not by much. AWESOME!! We have been told that as soon as the gradient gets up to 50, Dr. Hor (cardiologist) will be speaking to Dr. Hirsch (cath doc) about setting Ryan up for another Cardiac Cath with balloon. Last year, we found out just a week before her birthday that she would be getting this procedure in January, so her birthday and the Holiday's weren't that great. I didn't feel there was much to celebrate with everything happening to Ryan. This year, however, things will be totally different. We now have a lot to celebrate. This year, we will not have surgery on our minds.



Ryan's sats during her sedated echo
during the echo...sorry it's fuzzy, this pic was taken on my cell phone
After Ryan's echo, I swung by the gift shop to exchange a bracelet that I had bought for a necklace just like it. It's called the "always in my heart" jewelry....you can buy a bracelet, necklace or keychain and then you buy little charms to put inside of it. VERY CUTE.
you cannot tell what's in it, but I have 5 charms. A heart that says "hope" in it, a circle with a princess crown that says "mommy's princess," a red heart that says "daughter," a little girl with a dress on that has Ryan's birthstone in it, and a charm in the shape of the letter "R."
The ride home from the hospital didn't go too well because the nembutal that Ryan was on is the DEVIL!!! I cannot stand that med because of what it does to her the rest of the day. She was SO CRANKY. Once we got home though, she fell asleep. Dr. Hor called me to tell me that for the first time ever.....Ryan doesn't have to come back for 6 WHOLE MONTHS!!! That is amazing news. Ryan was down for the count for her nap so I started on getting some things done around the house, and that's when I heard the THUMP!!!
The thump was Ryan falling out of her bed. EEEEKKS......since she was still heavily medicated, she was unable to walk. Well, since I wasn't in her room I do not know exactly what happened but when I ran in her room, she had a pretty decent amount of blood on her face. Jay grabbed a washcloth and got it wet and we wiped her off. All of the blood was coming from the rug burn on her nose and not from the inside of either that or her mouth which was a relief. Poor girl....I can only imagine how bad it hurt. That wasn't the end of it though....it just kept coming.
Ryan was sitting on the living room floor and I went to the kitchen to grab her a little snack. I was getting some animal crackers ready in a bag for her to eat, when she suddenly jumped up and darted for the kitchen. We couldn't catch her quick enough and since she was so wobbly, she fell....HARD. When she slipped on the kitchen floor, somehow her left ear hit right on the corner of the wooden baseboard. So, the top of her ear is swollen and bruised. She's been through it!!!! It doesn't stop there...........it just kept coming.
As the day progressed on Friday, Ryan's nose began to run, and run, and run some more. I was hoping it was nothing more than a case of the sniffles, but I was wrong. Friday night was HARD on her because she wasn't feeling well. She woke up at 2 am and didn't go back to sleep until 5:30 am. When she got back up yesterday morning at about 8:30, she was S-I-C-K!! Fever was 100 but the amount of mucus coming from her nose was HORRIBLE!!! She couldn't breathe out of her nose AT ALL. I waited until 1 pm when the peds office opened and called to get her in, but they couldn't get her in until today at 1:20pm. We were ON IT.
We got to the doc today thinking they would just give her an antibiotic for the sinus infection and we would be on our way. Well, she got the prescription for augmentin, however, it's for her sinus infection, left ear infection, and skin infection. The skin infection happened because the scab on her nose came open, and her yuckiness leaking out of her nose, went in it. UGH. It doesn't look that bad though. I'm sure you all probably have this mental image of this disgusting looking infection on her upper lip but that's not the case. It's just a large scab that's red. Ryan will be on the meds twice a day for 10 days. We are still having her birthday party next weekend though because once on the meds for a few days, she will no longer be contagious.
St. Nick came last night to visit Ryan and she just LOVED everything he had to give her. Here are several pics!!!
digging into her stocking
wow....a GIANT pen.
scribbling on her new Disney Princess paper with her new GIANT pen
more nail polish...she loves having her nails painted.
her favorite....the "Dora the Explorer" bubble bath!!! (see the scabbed nose? :(
We have so many reasons to celebrate this year and I am so thrilled at how Ryan's appointment went, but I'm not forgetting the other families that are not so fortunate this year. My heart goes out to you all. Rather it's that an appointment didn't go well for your child, your child is in the hospital, or your child earned their wings way to early in life....my thoughts and prayers are with you all!!! ALWAYS!!!!!

this is now in our yard. the snowman moves up and down!!! TOO CUTE!!!


I am really looking forward to Ryan's birthday next weekend. I don't like the fact that she is one year older, but I love all the new things she is learning and seeing how much she changes on almost a daily basis. She talks better everyday and is just so amazing. Oh, and just an FYI, she weighs 31 lbs. and is 34 inches tall. ALMOST 3 FEET!! haha.
I may not get around to updating again this week but will post a birthday update next weekend for sure!!! I hope everybody had a great weekend and that you enjoy the week ahead!!

Tuesday, December 1, 2009

It was a Happy Thanksgiving...now we need prayers!!

Oh what a Holiday!! We had a lot of running around to do this past weekend. I hope everyone had a WONDERFUL THANKSGIVING!! On Thursday, we packed up the kids and stopped by my mom's. We didn't stay long because we were headed to my Aunt's to eat, eat, eat!! Once we got to my Aunt Beth's house, we all hung out and talked and then it was to STUFF our FACES!! I was trying to relax as much as possible because I knew I had a L-O-N-G night of shopping ahead of me. LOL. After we ate dinner, we were going to drive over to Jay's sister's house. At Sue's house, we had some dessert and the kids had a GREAT time playing with all of their cousins. They always love it at their Aunt Sue's. (Just to anybody that doesn't know, Ryan's middle name is Sue. She was named after my mother, Sue and Jay's sister, Sue. Fits pretty well!!) After we had some good family time, we were ready to head home. I had forgotten my camera so I have no pics. UGH...I hate when I do that.


When we got home, Ryan was quickly put to bed since she had fallen asleep in the car. We changed her clothes and down she went. I was in a hurry to get some warmer clothes on and head to Toys-R-Us to meet up with my cousin Kate, and her fiance, Justin. We met at 10:00 pm in anticipation for the crowd. Their doors opened at midnight. The line was SOOOOO LOOONNNNGGGG. It was a mad house. It wrapped all the way the ENTIRE shopping plaza which is HUGE!! Once we got inside, we rushed around to get everything we needed and made a mad dash for the line. From the time we got in, to the time we left, was only an hour. YESSS!! We then got to our cars, threw everything in the trunk and headed to Wal-Mart. We got to wal-mart at about 1:20 am and their sales didn't start until 5 am. We got a spot in line for a camera that Kate was purchasing and then went to walk around. Justin stayed in line while Kate and I went looking. The employees at that particular store are not really that concerned about the little items that people want. All of the sale items have signs on them stating that no items can be put into your cart or taken from that spot until 5. However, items like clothes, and little toys, are not a huge concern. They are more worried about people getting ahold of the electronics because some people wait in line ALL NIGHT for those things and it's not fair is somebody just goes up and takes one. So, with that being said, we grabbed ALL the little stuff that we wanted. I got some new bath towels for us, as well as some clothes for Ryan. I also grabbed some "Dora the Explorer" strawberry scented bubble bath. She will be SO excited about that!! Since we had most of our stuff that we needed, we just sat and waited as the clock kept ticking. Once 5 am hit, it was CRAZINESS!!! We ran around the store to grab 3 or 4 last minute items and then headed for the checkout. It went by SO QUICKLY. We were checked out and out the door within 15 minutes. You just can't beat that!!! We headed over to Target where the doors were already open and picked up some more hot sale items. All in all it was a pretty good night. I got everything on my list at all 3 places and made it home by about 7:45 am. Not to bad. It was well worth it because with everything that I got, had I not gotten it all on sale, would have probably cost me about $200.00 more than what I spent on everything. NICE!! I'm sure you all think it's crazy but hey, isn't that what the Holiday's are all about??








getting ready to leave for Aunt Beth's house









aren't these 2 such a cute pair? Ryan has been thrilled to have her "Bubba" around more





OK, so here comes the prayer part of this post. Please say a prayer for Ryan. We are taking her to CCHMC on Friday morning for another echo WITH sedation. She will be given nembutal again but this time, it will be an injection. They gave it to her orally last time, and she didn't do so well. It took her longer then expected to fall asleep and they had to give her the MAX dosage. This time, with the injection, it should "hit" her quicker and be a little easier to deal with. Please just pray that everything goes well. She is then scheduled to see Dr. Hor on Monday and have an EKG. We may be able to get the results on Friday, but if not, we will wait until Monday. I will, of course, keep everyone posted.



MORE PRAYERS NEEDED!!! Please say a prayer for Logan Jack's. http://www.whenlifehandsyouabrokenheart.blogspot.com/. He had his cardiology check up yesterday and it didn't go so well. Another surgery may be in his near future. Logan has already been through so much so stop by his page and check it out. WE ARE PRAYING FOR YOU LOGAN!!!



Also, Derrick Carter needs your thoughts and prayers as well. http://www.carolinacarters.blogspot.com/. Derrick also had a follow up and his first open heart surgery will probably be scheduled to take place by the end of January. WE ARE PRAYING FOR YOU D!!!!





here is a silly video of Ryan....the second one is sort of dark but it is her dancing to Janet Jackson while we were watching the American Music Awards a few weeks ago...SO FUNNY!!!




video



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Wednesday, November 25, 2009

Giving Thanks......

Every year, Holidays will mean more and more to us here. We are so very thankful for Ryan being here with us. Instead of making a list of everything I am thankful for (because I think that's pretty obvious) I am going to give thanks.





Thank you to our blog/carepage family. You have all been there to support us from the beginning and your kind words and thoughtful prayers mean more to us than you will ever know. It takes a lot to have a complete stranger on your side, but you all stepped in and I don't feel like we are strangers any longer. I feel like I've known a lot of you for a LONG time. Sharing our journey's with eachother has helped me so much in knowing that we are not alone in this "CHD world."




I want to say thank you to our family. You have all been very supportive and caring through the great times, and the very difficult ones. I know I can count on each of you to be there for us no matter what. It's amazing to know that Ryan has such wonderful people surrounding her at all times!! She to, is thankful for your endless love!!





Thank you to our friends. We have such wonderful friends that always give words of encouragement and are there always when we need someone to talk too. You have all been so good to us and it is very much appreciated.






MOST IMPORTANT THANKS.....The doctors and staff at Cincinnati Children's Hospital Medical Center. Without you, I don't know where we would be. You have all done such an amazing job caring for our precious heart child. You do everything you can to make appointments with Ryan comfortable for her and we truly appreciate all of your hard work and dedication. It is because of you, that we are confident in knowing that Ryan will be with us for ALL of our Holidays ALWAYS!!! You have given us the best gift OF ALL!! and that is FAITH, LOVE, and HOPE!!

There are so many things that we are all Thankful for this Holiday season, but don't forget to give thanks as well. My heart goes out all the parent's whose babies became angel's too soon. May GOD be with you this Holiday season and always. My thoughts and prayers are with you all. God Bless everyone and have a HAPPY THANKSGIVING!!!!


Sunday, November 22, 2009

Another scare....

Oh boy, where to start? When I woke up on Saturday morning, I was in a rush to get out the door. I was meeting with Katie (my cousin) and her fiancee to go talk to a florist for their upcoming wedding in March. We were then going to Hobby Lobby to pick up some things for Christmas for her son. When I returned home, we had a bit of a scare. Jay looked at me and said "does Ryan look blue to you?" I scooped her up and started examining her lips, face, fingers and toes, and sure enough, she had a blue tint to them all. I immediatley grabbed the pulse-ox to see what was going on.
here is the results....98% for O2 sats. GREAT!! but......
If her O2 sats were 98....why is she blue?? We still do not know, but it went away. Jay said this blue tint started about 15 minutes before I got home, and after I got here, it lasted about another hour. We decided we will just keep an eye on her and make sure we are checking her sats at least once a day until she sees the cardiologist on December 7th. With this happening, I'm getting more nervous. Ryan is scheduled to be sedated for her echo on December 4th, and will then get her EKG and see Dr. Hor on the 7th. It was on December 5th last year that we were told she needed her cardiac cath done....eeks...her echo is the day before that 1 year anniversary of bad news. Let's hope that we do not get a repeat of that this year!!
Ryan has been fighting nap time more and more these days. Yesteryday, she refused. She wasn't acting to tired so we just didn't really push the issue. I do still want her to take at least a small nap everyday, but I know it's not the "end of the world" if she doesn't. So, she was hyped up on something ALL day yesterday and just didn't want to sleep. We had some coloring time, and played with her blocks. When she stacks them, she tries to count as well. She can easily count 1-2-3, then she goes straight to 5-6-7, and then it's 10!! lol she is really trying though.

don't you just love the shades?? She's SUPER COOL!!


Stef, we used your recipe and made some ornaments!!! That was too fun! Ryan loved it. I also wanted to get her handprint this year so we mixed the dough, and then flattened it out, and when she stuck her hand in, she yelled "oohhh SAND!!!" Too funny. It did feel like wet sand though. HA. We made a handprint ornament for ourselves and also for my mom.



Ryan's tiny little hand with her REALLY long fingers

With Ryan not napping yesterday, she CRASHED right around dinner time. We could tell as she was eating that she was just EXHAUSTED!! She started falling asleep in her high chair so I just had to grab the camera. You will notice in this video that she keeps saying "cheese" because she thought I was just taking pics of her....and sorry about the camera shaking. I was laughing so hard and I just couldn't help it.


video




This next photo is the end result.



OUT.....she was snoring SO LOUD!!



Pretty Princess....messy hair.

This last video is the one I have been trying to post on here for a few days. FINALLY. It's just her saying that she loves all the kids on the blog. TOO CUTE. ENJOY!!

(keep in mind you will have to pause the music playlist at the top left of the blog so the song doesn't mix in with the video)



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I hope everyone has a GREAT Thanksgiving....I will try to post before then but may be too busy. We have a lot going on this week. :) I LOVE THE HOLIDAYS!!! BUSY BUSY BUSY!!

Thursday, November 19, 2009

Another one of "those" days.....

I know it's normal, and everybody has them, but today I'm just having one of "those" days. I was fine earlier this morning and most of the afternoon. Then, it just hit me. I looked at Ryan sitting on the couch watching "Finding Nemo" and I just started crying. I couldn't control it anymore. It's been a while since I've really just let it out. I know it's normal to ask why this life was chosen for you, but is it still normal after dealing with it for almost 2 years? January 10, 2010 will mark the 2 year anniversary of Ryan's diagnoses. Should I still be asking why? Should I still have breakdowns? It's just such a confusing state to be in but I know it's normal. I sometimes think to myself....I wonder if I will be able to watch Ryan get on the bus for her first day of school? I wonder if we make it to see her as a teenager if we are going to fight a lot or be close? I wonder if I will ever see my precious baby walk down the isle on her wedding day? Will she be a mommy and if so, what kind of mommy will she be?
I know I'm jumping WAY ahead and shouldn't be thinking/worrying about these things now, but then again, it's a reality. Some of us "heart families" don't get the chance to see these things happen. My heart goes out to them EVERYDAY!!! I know I'm blessed and will be FOREVER grateful to have Ryan NO MATTER WHAT!!! I know all of you other heart mom's have had some point where you've had a day like this.....so I'm asking for your help.....how do you cope when you have one of "those" days where you just breakdown and realize all over again that your child is "terminally ill?" Any tips would be appreciated...it's nice to help eachother through tough times. Hopefully I don't wake up tomorrow feeling the way that I do now. Tomorrow, I will wake up and give my wonderful blessing a BIG hug and kiss and remind her of how much I love her.
I tried once again to post the video's but for some reason they are not loading correctly. I guess I will try again some other time. I hope everyone had a great week!! Tomorrow is FRIDAY!!! YAY!!!!

Wednesday, November 18, 2009

more BIG changes....

So, I just cannot seem to help myself. I know I get a little carried away on changing this blog but I think I'm going to keep it this time. I LOVE LOVE LOVE IT!!! Ryan gave me her nod of approval today to.
QUESTION: DOES ANYBODY GO SHOPPING ON BLACK FRIDAY?????
I DO!! I actually just started last year. My cousin, Kate, that I seem to talk about pretty frequently (because she's AMAZING) asked me to meet her at walmart last year on THANKSGIVING night at about 9:45 pm. We SPENT THE NIGHT there!! Her and her fiancee, Justin, were buying a HUGE plasma tv and there were only so many so we had to get there super early. NOW I'M HOOKED!! I got several things for Ryan while I was there and saved probably $100.00. This year, I am getting my game plan together so I'm FULLY ready. I have a list of items that I need to purchase at walmart and target. I'm getting so excited for this. It does seem like a long time to spend there but it's worth it. Last year, the sale actually began at 5:00 am. So, I got everything I needed to get while there, and got in line to pay and was home by 6:15. NOT BAD AT ALL!!! This year, though, it will be later because I need to go other places too. IF YOU'RE INTERESTED....... go to www.blackfriday.info they have ALL of the ads for black friday that have already been made available to see. If you click on a certain store, there will be a tab at the top of the listed items that says "ad scan" CLICK ON THAT!!! It pulls all items available up just like a normal store ad and you can browse all the WONDERFUL DEALS!!
Moving on....I'm not really sure what Ryan's deal has been lately. I don't know if it's that she's almost 2 and acting what her "new normal" is going to be, or if something more is happening. For the past 2 days, EVERYTHING is a CRISIS!!!! For those who know Ryan pretty well, she is a very happy go lucky kinda gal. She doesn't whine to much and is usually pretty content for the most part. NOT THE PAST 2 DAYS THOUGH. It seems like everything that happens is just causing her to melt down. I will tell her no, and she throws herself on the floor whining. She seems to be crying over EVERYTHING. And it's not just whining all the time, it's actual CRYING. I told her it was time to go too bed tonight (something she usually has NO problem with) and she started freaking out!!! She just jumped in my arms and was crying hysterically. It took me about 15 minutes to calm her down and I layed on the couch with her for a few minutes. I don't usually let her get tired to the point of exhaustion so that way the terrible tired mood doesn't kick in. That's why she goes to bed early around 8 pm every night. After laying on the couch with her she was fine, and went straight to bed. She may have just needed a few extra snuggles before she laid down I guess, but that doesn't explain her getting MAD about all this little stuff lately. Maybe it is just the terrible two's!! AHHHHH....SO NOT READY FOR IT!! Any tips or advice would be great on this subject if you have been there before. Please let me know if there is anything I should try to make this easier on all of us.
Also, I saw something on the news today about Santa not being safe this year. GERMS!!! So, I want your opinion.....do you think taking your kids to get their pictures taken with Santa should not be done this year because of all the illness going around??
HOT TOPIC...... As I'm sure many of you have heard, a little 5 year old girl's body was found in North Carolina. Her mother reported her missing, and then the police found out that her mother was involved. I'm not going to discuss what was done to this angel while she was still with us on this earth because it is heart wrenching. It brings tears to my eyes when I think about what some parents do to their kids...especially when there are people out there that cannot have kids and would love to be given the chance. Or in most of our situations, when we love and cherish our children beyond words, and they have this deadly disease known as a CHD. Do me a favor....before you put your kids to bed, or if you've done that already, then in the morning....Give your son/daughter an extra kiss and hug and explain to them how much you love them, and how big of a blessing they are in your life. Our kids need this!!! We need this!!! It's so hard to hear about ANY child losing their life. Just make sure your child(ren) know how much they mean to you. You never know what this life will bring to you, so treasure it while it's still yours!!!!

Monday, November 16, 2009

She wants it all and she's SERIOUS!!!!

This time of year has always meant a lot to me. Time with family at Thanksgiving and Christmas. Time eating delicious food. Time putting up Christmas decorations. Time spent shopping for presents and then the time spent to wrap them. Every year we all have plenty of things that we are greatful for. This year, I am thankful for time. More time with my beautiful daughter. We all know that this CHD life can be turned around at any moment and it can change for the worse. So, with that being said, I'm most thankful for the chance to spend more Holiday's with Ryan. She has been the best blessing in my life and that will never change. There have been a lot of little one's lost to this HORRIBLE disease this year, and we should all take a moment to remember those that have been lost, and be thankful for what we have. Keep those families in your heart this Holiday season, because it's not going to be an easy time for them.



I usually do not put up our Christmas tree until after Thanksgiving, but this year, I'm really excited about it. Not that I haven't been in the past, but I just felt like getting started early. I put up the tree this past Friday and then Ryan helped put the ornaments on Saturday. It looks a little bare without being able to see the lights on but once they are on, it's so pretty. It is pre-lit with red and green lights and also has white fiber-optic lights on it. SO EXCITING!!!

Every single toy commercial that comes on t.v. now, Ryan feels the need to scream out "I want that!!" It's pretty funny because a lot of them are for video games and things that she doesn't fully understand yet. She just knows it looks cool so of course, she just has to have it. She has been doing so many funny things lately. When at my mom's one day last week eating dinner, Ryan was outside in the back yard just running up and down their hill. She stopped halfway down the hill and stuck her hands up in the air in a questioning gesture and just yelled "ARE YOU SERIOUS??" LOL I have never heard her say this before and just couldn't control myself. I was laughing so hard that the tears were just flowing. Because she saw the laughter just booming from my mom and me, she must have stood there for 15 minute straight just saying it over and over. It was probably one of the funniest things I have ever seen. She just cracks me up with her personality and the things she comes up with. Another funny thing is when she is doing something she shouldn't, I will ask her "do you want to go to time out?" Ironically enough, she often puts herself into time out. When she does something wrong, she will say "go to your room." Then she runs back to her bedroom and SLAMS the door shut and will sit on her bed for a few minutes before coming back out. Well, yesterday, I asked her if she wanted to go into time out because she wouldn't stop standing on the coffee table.....she looked at me with a very blank stare and shrugged her shoulders and said "uh huh!!" Then she just laughed right at me. I just cant believe her sometimes. She's getting to be quite the handful with her funny things that she says and her little attitude on top of that. I dont know what I'm going to do when she is a teenager!! AAHH. :) Those will be some crazy times I'm sure.

I have a couple short videos that I wanted to add but I'm having some issues getting them uploaded so I will try again next time.. Have a great week everyone!!!

Wednesday, November 11, 2009

Oh this darn computer

Ok so we are having issues with out computer AGAIN!!! I'm so tired of that darn computer, so here I am using my mom's AGAIN!!! I don't know what else to do to fix it. It is just going SO S-L-O-W that it takes about 15 minutes for a page to load. Anyway.....there's not a WHOLE lot that we have been up to, but I have some good pics.


We are trying to get in the Christmas spirit already. Can you believe it's only 45 days away?? That means its getting closer to Ryan's birthday. Ryan will be 2 years old on December 13. CANNOT BELIEVE IT!!! Instead of giving the kids at the birthday party little goodie bags to take home, we give them Christmas ornaments with their names and the year. We did this last year and everyone loved it. It saved them from having to get ornaments for their kids. GREAT IDEA!! This year, I might have to make them...thanks to Stef for sharing the idea of home made ornaments. That sounds like tons of fun.


any idea who is hiding behind those curtains??? RYAN of course!!!

I am getting pretty excited about Thanksgiving, Ryan's birthday and Christmas. I just love this time of year. Although its been strange weather for us lately. I don't know how many of you, IF ANY, have ever been to Kentucky, but the weather is VERY unpredictable. Today it's been a bit chilly at about 60 degrees but 2 days ago it was sunny and 70!! It is usually NOT this warm in November. I'm not sure that we will have a white Christmas. This is just not normal. But I'm not complaining....I don't like the cold.

it seems like every time Ryan eats a peanut butter sandwich, she falls asleep in her high chair. LOL

time for the swing at the park with Me-Me and Pappaw. SO FUN!!

watch me slide all by myself

lots of bubbles in the bath!!! her favorite.

Other than going to the park and planning for Ryan's birthday, we don't have much more to update on. Ryan has been on her antibiotic for almost the full 1o days now for a sinus infection, but other than that, we have all managed to avoid getting really sick for now. *knocks on wood* I'm hoping we can all stay that way.

Other than today being Veterans day...SUPPORT OUR TROOPS!!! Today, is also DADDY's BIRTHDAY!! not my dad, Ryan's dad. HAPPY BIRTHDAY JAY!!!!! WE LOVE YOU!!!!! Ryan woke him up this morning but throwing his card in his face and then screaming out the birthday song. What a nice way to wake up in the morning huh?? It was precious!!

I guess I will try to update again asap but I'm not sure when that will be. For those of you whose pages I have not looked at lately, I apologize. Once everything is up and running again, I will have to play catch up.....Thanks for baring with us!!

Thursday, November 5, 2009

What happened to his arms????

Yesterday, Ryan and I were playing with Mr. Potato head and having a great time doing it. I opened up his back and got out his eyes, ears, mustache, etc. There were a few pieces in her toy bins in her room too so we got them out. As we were putting together Mr. Potato head, I started looking around at the pieces we had. "Ryan, where did his arms go?" The look she gave me was priceless. I wish I had my camera on at that time. She gave me a look that said "I'M GUILTY!!!" Then she said in a very shy and faint voice "where it go?" I knew something was going on at this point so I enlisted her for help on finding them. It's not that I would be upset if we didn't know where they were, I was just interested in knowing if she even remembered what she had done with them. For the past few weeks, she's been really into hiding things, and hiding herself for that matter. If she's being really quite, I will look around the house for her and she will be sitting in a closet somewhere or in her play tent and tunnel downstairs. When she realizes that I see her she will shout out "YOU FIND ME!!!" She loves this game a little too much because sometimes when I think she's in the typical spot, she'll surprise and scare me by not being there.

So off we went, to look for Mr. Potato heads limbs. I checked under all of the beds. (again, typical spot for her to hide toys.) NOT THERE. I checked in the bathroom cabinets. (another clever place for toys to end up.) NOT THERE. While I was doing this, Ryan was just following me closely as if silently laughing at me not being able to find a set of white plastic arms. I gave her a pretty serious look and said again, "Ryan, what happened to his arms?" This time she let out a nice giggle and said "arms?" With that, I gave up my search. I had other things that needed to be done. I was unloading and reloading the dishwasher and had to get laundry done also. I grabbed the hamper out of Ryan's room and made my way down to the laundry room. I sorted all of the laundry and put a load in the washer. When I looked down to grab the hamper and return it upstairs to Ryan's bedroom, you'll never guess what I saw sitting at the bottom.




look closely and you can see them....little white arms!!!


AHA....there they are!!! The funniest thing about the arms being in the hamper is that it was full. So, how did they get all the way to the bottom? Well, the holes in the side of it of course!! She must have been very focused on this task. I'm assuming since she's not far away for long periods of time, that this was done while she was supposed to be napping, or when she first got up in the morning. She must have sat on the floor concentrating greatly on getting those little limbs through the holes and into the bottom of the hamper.

I took the hamper and the arms back upstairs and asked Ryan what was in the hamper. She looked at me with BIG eyes and just gave me a HUGE smile. She didn't even have to look...she said "arms?" DING DING DING....you are a WINNER!!! Good job Ryan....your really smart. How did you know what was in there without even looking??? HAHA.


Later in the day yesterday, Ryan came to me and said "where baby go?" This time I knew she was just wanting me to find it because she thought it was funny. I didn't really have to do a great search. I walked into the living room and looked around and it sort of popped out at me.

Where's the baby? sitting under the end table next to the couch. SILLY GIRL!!

Does anyone else have any funny stories of their kids hiding either their toys or themselves? I want to hear about it!! Let me know if you have any good ones. I hope everyone is having a great week!!!


Monday, November 2, 2009

A Happy Halloween it was...

I hope everyone had a VERY HAPPY HALLOWEEN. Our was great!! We had some family over to join in on the fun. My mom and her husband came, my cousin and her fiance, and then my Aunt. Ryan really didn't know what was going on, but she was excited about dressing up and kept talking about us having a party. Whenever she sees a lot of people, she thinks it's a birthday party and starts singing. FUNNY STUFF. So, we all ate dinner, and then starting getting the kids ready for trick-or-treating. Since it was pretty cold out on Saturday, staying at about 50 degrees all day and then colder when it got dark, I had to quickly think of a way to make Ryan stay warm but make it to where people could still understand her costume. I grabbed an old zip up hoodie that was a little bit too small for her, and my cousin, Katie, worked her magic. She cut it up in some places and put safety pins on it like the "punks" do. It turned out REALLY well.


here is Ryan before her hair was done. She kept wanting to put her hands in her pockets but forgot that there was a hole cut in it. haha
I knew that I wouldn't be able to give her a mohawk with doing little pony tails because her hair is so fine, and although it doesn't look like it, it's actually pretty long on top when you try to spike it up. So, I did 4 little pony tails and once I sprayed the pink in, I didn't even need hair spray. That hair coloring spray is like glue in a can. Here is the result.

again with the one hand in the HOLE pocket. As you can see, I also painted her fingernails black for just an extra touch. NICE.

this was when she was done collecting candy and decided to just hang out in the driveway with everyone to get warm by the fire in our fire-pit. Like the slippers?

Jay and I walked around with Ryan for about 45 minutes and then she sort of lost interest. We went back to our house, and she helped pass out candy and eat some of hers of course. She had a REALLY good time and we had so many compliments on her costume. A lot of people said she was the CUTEST punk EVER. I'm sure next year she will be able to tell us what she wants to be so I don't have to come up with something myself.

here is Josh (Michael Jackson) Ryan (punk) and Quintin (mob gangster) for those who do not know, Quintin is my cousin Katie's son. you can't see Josh's glove in this pic but he had a sequin glove that he wore.

Last night, we went to Jay's brother's house because his son Logan just turned 3. His birthday was yesterday so they had a party for him last night. We ate dinner there and watched Logan open his presents. Ryan got really excited once again because it was a PARTY!!! She just cracks me up because she waits until everyone is DONE singing, and then she yells out "hap bir-day to woo!!" I think she does it because she wants the spot light to be on her when she sings. lol.

I hope everyone enjoys their week. Make sure to stop by Logan Jacks' page tomorrow and leave a message to wish him a HAPPY 3rd BIRTHDAY!!! www.whenlifehandsyouabrokenheart.blogspot.com Logan is a very special little boy and we just LOVE reading his blog to hear about all the funny things he's up to. Until next time....
















Thursday, October 29, 2009

The protocol is sedation

Does everyone just LOVE the newly re-designed blog? I spent a lot of time on this and am quite proud!! Here's the scoop...Ryan has another appointment scheduled to see Dr. Hor in December. He only sees patients on Mondays and she has to get an echo done every 3 months. Since her last echo was with sedation on September 4, she needs another one. The hospitals protocol is to give mild sedation with their echo's for children under 4 years old. When she saw her old doctor at the outpatient office, they didn't do sedation. So, Ryan is scheduled on Friday December 4th at 8:00 am for a sedated echo. She will then see Dr. Hor on Monday December 7th at 10:50 am for an EKG and follow up exam. Since his schedule fills up so quickly, I might call back next week and go ahead and schedule her for March as well. That would probably be a pretty good idea.
In the mean time..it's almost Halloween!!! Can you believe it's almost here? I love this time of year. I love the leaves changing color and the nice breeze we get on a sunny day. I could do without the illness and germs all over the place but hey, I guess you have to take the good with the bad. I want to hear what everyone's kids are being for Halloween. I'm sure I will see pictures later and I really look forward to that!! What is your little guy(s), girl(s) being this year? In case you didn't read the other post, Ryan is being a punk rock girl, and Josh is being Michael Jackson. I cannot wait!!!
I also want to hear about everyone's pumpkins!! I love pumpkin carving and I just think they look really nice when they are lit. We have our one big pumpkin with the spider carved in it, and Ryan also has her Mr. PUMPKIN head. (complete with Mr. Potato head pieces.)



Ryan still has a runny nose. She had the fever of 102 last week, which thankfully went away with 2 doses of meds but the runny nose just wont stop. I believe its draining to her throat now because the cough is getting pretty nasty but only at night. Of course!!! I'd rather her cough through out the day so it didn't wake her up all night. Poor girl!! I keep trying to get her to say "trick or treat" but the only part she says is "or tweat" lol. She tries so she gets an A+ for effort!! Maybe eating some Halloween candy will make her nose stop running?? HAHA....wouldn't that be strange??
I'm not sure if I will have anything to blog about between now and Saturday so if not, I really hope everyone has a VERY SAFE, VERY HEALTHY, and HAPPY HALLOWEEN!!!! I cannot wait to see everyone's pictures after!!





Tuesday, October 27, 2009

UNDER CONSTRUCTION!!!

PLEASE BARE WITH ME...I am making changes ONCE AGAIN to this blog. When you view the page, you will notice things don't look right or match and it will look pretty crazy but I am working on making changes and hopefully I can stop changing my mind and keep it designed one way. HAHA. I hope everyone is having a great week!!!

Monday, October 26, 2009

Today, we received the gift of HOPE

Has anyone ever given you a gift that changed your life? It can be ANY kind of gift at all. Something material, or something not? Our children are blessings and gifts with bows on them bigger than we ever thought possible!! When you receive the news that you have a sick child, let's be honest, you don't think of that as a gift right? I know I didn't, but I do now. Well, what happens when you get the GREATEST gift of ALL other than the birth of your baby? We received that gift today and I cried tears of JOY. Today, we received a gift that will change our lives and how we live it. We received the gift of HOPE!!
At 9:00 am this morning, we took Ryan to Children's Hospital for a second opinion on her heart. We met Dr. Kan Hor for the first time and listened closely to what he had to say. As most of you know, we had some issues with her regular cardiologist because our questions were not being answered thoroughly and it made us very uncomfortable. For the FIRST time since her diagnoses, almost 2 years ago, we got the answers we have been looking for.



This is Dr. Hor, and he has changed our lives for the better.
We knew this appointment was going to go well as soon as he walked in the room. He scared Ryan when he first came in because she was standing by the door. He looked at her and said "WOAH....I'm sorry little missy, let's try that again." He then went back out of the room and shut the door behind him. He slowly opened it again and barely stuck his head through. He gave Ryan a BIG smile and simply said "peek-a-boo beautiful." She gave him a HUGE smile back with a little giggle in the mix. For those of you that don't know, this is so great because every time she has seen her previous doctor, nothing was ever done to make her smile or laugh. It was pretty much like she would come in, tell us results, say to come back in 3 months, and out the door she went, as quickly as possible. We could tell right away, that's not how this doctor was which automatically made us feel better about him. He shook our hands and then sat down and started talking to us about personal things. He said he had a 21 month old daughter at home and another baby on the way, and then asked if Jay and I were planning on having any more kids. Even if he didn't really care, it was nice that he acted that way. He made us feel like he wanted to get to know the people caring for our precious heart baby. He wanted to listen to Ryan's heart first so instead of just sticking her on the exam bed and pulling out his stethoscope, he had her sit in my lap, and he had her help him to make it more fun for her. He let her hold it, and then just guided her hand around her chest where he needed to listen. We could tell she thought it was really cool that instead of not being able to touch anything, she got to help.
One of our biggest questions that we've always had is "if you know she needs surgery at some point to fix her valve, why can't you just do it now and get it over with? That way she won't remember it." In the past, this question was answered with a simple "that's just not the way we do things." OK...but WHY is that NOT the way YOU do things? He was able to REALLY answer us today. Dr. Hor explained that they don't typically repair a valve. If they do surgery on Ryan NOW and replace her valve with an artificial one, she will outgrow it probably within the next 5 years. This will lead to ANOTHER valve replacement by the age of 8, the latest. Once that surgery is done, she will outgrow that valve probably around the age of 17, the latest. With each surgery, the risk becomes greater and greater. Every time surgery is done, she is put on bypass and given a strict regimen of meds to take daily for 2 whole months AT LEAST. Insead of giving her around 5 surgeries by the age of 30, why now wait AS LONG AS POSSIBLE and only give her ONE....MAYBE TWO?? Well, that makes GREAT sense to me!!! Although Ryan's balloon that she had on January 9th didn't do what they wanted it to do, it did improve her heart somewhat. Her gradient at that time was 55. After the procedure, it dropped down to 29. They had hoped, and with the statistics, that it would go down to between 0-5. It obviously didn't do that, and since then, her gradient has gone back up to 39. She's borderline mild and moderate right now as far as the severity of her disease. Our hopes are that she will stabalize, but if that doesn't happen, once the number get's back up to around 50 (the severe range) Dr. Hor said he would want to try another balloon. This is something her previous doctor told us would be a waste of time since it "didn't work" the first time. Dr. Hor's take on that is, "it will buy her more time." If they do another cardiac cath, they can knock her numbers back down, even if it's just a small amount, to keep her out of the severe range of stenosis. By doing a cardiac cath every time her numbers jump back up, they are able to keep her at a number that is good enough to keep waiting on surgery. He said that the ideal situation for us right now would be to be able too wait at least 10 years before surgery. Even though that will be harder on her physically and mentally, it would be the best thing to do for her. Why couldn't anyone ever tell us this before?? YA GOT ME!!
It all makes sense now. It's not "just how they do things." They have a REASON..and ACTUAL REASON for this, and it is to benefit Ryan. It's amazing when someone gives you a breath of fresh air and gives you HOPE for your childs future. We were also told that Ryan would never be able to play sports. Today, we were told that her body will not do more than it is capable of doing. If she wants to play sports and get involved, she can do so, as long as we as parents, and her realize that she does STILL have heart disease and that if she feels like she needs to take a break or stop doing something, that's what will happen. But, she can TRY. I've never felt this GOOD about a doctor. He made us feel so comfortable and I just cannot get over how great the appointment went.
He did tell us that even though this is good news and that we now have a PLAN for Ryan, she does still have a CHD. We need to keep in mind that she will be different than other kids. If she gets sick, we need to keep her at home and away from extreme germs. We still have to watch her and make sure her breathing is ok. This is something that will ALWAYS need to be done and we're JUST FINE with that. It's just so nice to hear though, that this doctor has great HOPES for Ryan. It could still very well happen that she needs surgery sooner than 10 years. If her numbers jump back up, and they do a cardiac cath that doesn't make the numbers go back down, then it will be time to discuss other options at that point. But, until that day comes, we are going to breathe a little easier and probably sleep a little better.
After this amazing appointment today, Jay and I both decided that Ryan will no longer see her previous doctor. We just felt way to good about the one we saw today. Since she didn't get an echo today, and still needs one every 3 months, we will be taking her back to see Dr. Hor in December to get her echo done and discuss the results with him, the man that has given us te gift of HOPE.


Here is Ryan playing with the "stickers" from her EKG...she thought it tickled when she would stick them on and pull them off. SILLY GIRL.

Her favorite thing about seeing the cardiologist....NO CLOTHES!!! She can run around in just a diaper and be REALLY happy doing it.



OTHER NEWS:
Our team, HEALING HEARTS, raised $500.00 for Cincinnati Children's Hospital Cardiology Department. There is still not a total raised OVERALL but I will let you know when I do. We did pretty good, but am hoping to at least double it next year. In the mean time, I'm starting to work on getting Ryan's birthday party planned, and trying to get a little Christmas shopping done at a time. WISH ME LUCK!!!


I want your comments!!! Let me know of a gift that you have received that just MADE YOUR DAY. It can be ANYTHING. Or more than one thing. Something you may or may not still have, but that you will NEVER forget.


Sunday, October 25, 2009

Just a little something....

I don't really have a whole lot to update on. Ryan came down with a fever of 102 on Friday but it went away after 2 doses of meds. THANK GOD!! She has had a runny nose for a few days but it seems to be getting better. We had a little scare but I guess things are ok now.
We had a pretty relaxed weekend. On Saturday, me, Ryan, my cousin Katie, and her mom went to look at a flower girl dress for Ryan to wear in Katie's wedding. We were pretty excited because we got a GREAT DEAL on this dress. She looks so precious and like a little bride. It's a little bit big on her now, but thats ok because the wedding is not until March.



Don't you just love it??? I sure do. The color of the sash will be changed to match our bridesmaid dresses which are a color called Sangria. It's like a deep fuschia I guess you could say. It's very pretty though.
Today was also pretty relaxing. With Ryan being sick I went to the grocery store by myself while she stayed home with Daddy and napped. Earlier though, we carved our pumpkin here at home on the deck. Once again, Ryan wouldn't touch it. She kept saying ewww. HAHA. Oh well, maybe next year she will get into it. But, with her love for spiders, it was only right for me to carve a spider into her pumpkin.


It turned out really good I think. It was sort of hard to do because the legs on it are so skinny that I kept having to using the pumpkin carving saw to scrape the inside of the legs more so the light would shine through. I cannot wait for Halloween!!

Well, I guess that's it for now. Just wanted to give you guys a little something. Wish us luck tomorrow because tomorrow morning is Ryan's appt for her 2nd opinion. We are to be at the hospital at 9:00 am. I will update tomorrow with what this doctor has to say. I sure do hope everyone had a GREAT weekend!!!


Thursday, October 22, 2009

A splash of color....LOVE THIS!!!

Does anyone else just LOVE LOVE LOVE black and white photo's? I sure do. But what happens when you add just a SPLASH of color? I think pictures like this are beautiful. NO matter what it is a picture of. Here are some pictures I did of Ryan with just a touch of color.








I would also like to ask a favor from everyone. Jay and I are both VERY unsure of the H1N1 vaccine. If anyone can please share any information with us that would be greatly appreciated. If you guys have any links you could leave in a comment, or any personal experience with the vaccine, please let me know. Ryan's nurse said she SHOULD have the vaccine, but it is not yet available to us. On the news today, they had a map of the US and the states that were colored in RED had the highest rate of people infected with the virus. Well, Kentucky was one of them, yet we do not have the vaccine yet. That really boggles my mind. Thanks for any info that you can share!!! I'm not sure I will ever feel comfortable with Ry getting the shot, but the more info, the better. :)