Tuesday, February 1, 2011

8 months later.....

Ok so I will start with a major apology! It has been almost 8 whole months since I posted anything. I am going to try to update at least once a month from here on out but please do not hold me to it. By the time I get off work, pick Ryan up from school, come home and eat dinner............EXHAUSTED!!!!

Health Update!!!

Let's see here.......gotta think back a while! I'm sure you probably don't remember but Ryan was sick A LOT last year! She constantly had a sinus infection and it never got better. After SEVERAL months of being sick and seeing the doc 13 times in 7 months, they finally figure it out. She went back to her ENT doc and he requested a CT scan of Ryan's face. (WHAT???) That's what I thought too! Turned out, every single sinus cavity and pocket in her face was filled with infection! YUCK!! Her adenoids were also HUGE! So, Ryan was scheduled for surgery on November 19. Before she could have the surgery, she had to see Cardiology of course......AND.....her heart is STABLE!!!! There has been no progression. THANK GOD! Dr. Hor approved her procedure. The surgery she had was an adenoidectomy (removal of adenoids) and a sinus wash out. The adenoid part was fine and no big deal, but the wash out sounded pretty painful! They had to fill BIG syringes with salt water, and then attach a skinny but long tube to the end of it. The tubes got stuck up her nose and pushed into her face in the cheek area where the sinuses are located. They then pushed the salt water in, then sucked the syringe back out! BLAH GROSS! They repeated this several times. The total time was about an hour and it worked wonders! She has gotten sick since then, but now the infection is able to drain out on it's own. The recovery wasn't so great. She had nosebleeds for 3 days and 2 black eyes from the tubes in her face. Seeing her like that was pretty difficult. It looked like somebody beat her up. Not a nice vision. It was worth it though because now she is better.


A few big events have taken place since the last post...2 of them being pretty recent. Ryan is now 3 YEARS OLD!!!! That's right! She turned 3 on December 13th and I'm pretty sure this year, she is going to be about 17 or so! The things she says just amaze me! (that's not always a good thing!) Pics of the BIG 3 YEAR OLD BELOW!!!

As you can see, she had a BLAST!! And spongebob had to come too her party to! HAHA. I really cannot believe she is 3 already! TIME FLIES! She got tons of stuff for her birthday and loved it all!

The next big event was Christmas! She was SO EXCITED about Santa bringing her a BIG KITCHEN. She saw this big kitchen at Children's Hospital when she had her surgery. They had one in the waiting area of "same day surgery." She HAD TO HAVE IT!!! So, Santa found it online at http://www.littletikes.com/

She was in total shock when she woke up Christmas morning and saw the very thing that she had talked about for 2 whole months! It came with a ton of food and everything! She must have been such a good little girl last year!

Ryan is doing great in school also! She can count to ten and knows all of her colors!!! (in sign language too!) She is so smart that it just blows my mind! She has been very sweet lately to. A few weeks ago she told me "Mommy, you are the best mommy ever!!!" TOO CUTE!!! and she calls me her "snugglebums" LOL. It just melts my heart!

Surprisingly, we really don't have anything new going on other than the stuff I mentioned. I will try to post more often!!! And hopefully soon I can muster up the energy to add more pics! I am also planning on trying to catch up on what has been going on with everyone else to.

Until next time....

Monday, June 21, 2010

It's been a while....

Sorry it's been so long again. There have been a lot of people getting ahold of me on facebbok and through email stressing their concerns over Ryan. Well....she is doing great. Me on the other hand, not so much. I stayed home from work today VERY SICK. Fever of 101 and aching all over. Also, I have a sore throat. UGH!! I really hate feeling this way. I have no energy at all. :(
I thought I would post some pics of Ryan actually having a good time in Cumberland.

We took Ryan on June 8th to see Dr. Myer up at Children's. He is her ear, nose and throat specialist. He thinks that the reason her lymph nodes got so big is due to strep. He thinks the strep attacked her glands and lymph nodes. The only way to know for sure what made all of this happen is to biopsy the lump. NOT HAPPENING. Her lymph nodes are still somewhat enlarged but a lot better. She took a very strong antibiotic for 2 weeks and has been doing well.

This is a picture of Ryan at the hospital last Friday. She had her sleep study done and we should be able to get the results at the end of the week. We were expecting it to go really bad but it went great. We thought she would scream her head off while they hooked everything up to her but she didn't make a sound....except for chattering away of course. She slept through the night with no problems. It was so nice to see her being such a big girl. I will keep everyone posted with the results when we get them. This study will be the deciding factor on rather or not her tonsils and adenoids will be removed. I'm sort of hoping they just do it and get it over with. She snores and stops breathing in her sleep a lot. Hopefully we will get it all figured out. This girl is my hero. She has been through so much and I really do look up to her. She can handle it all. She will grow up to be a stronger person for everything she goes through.
I will post again when we get the results of the sleep study and let everyone know what is going on. Thanks again for all the support and worry for Ryan. It means more than you will ever know. :)

Tuesday, June 1, 2010

When it rains....it POURS!!!

This update probably wont be very long because I have suddenly hit a wall of anxiety over the recent events that have taken place so I'm just going to get too the point. We left this past Saturday to go to Lake Cumberland. It's 4 hours south of us in Albany, Ky. We got to the lake at about 1:30 pm and my mom was there waiting for us with the boat ready to go. We were so excited to get away for the weekend...and Ryan loves the boat and lake. Everything was normal...and fine....and well.....GREAT!!! UNTIL....we were on the boat hanging out and we were getting ready to go for a swim. My mom had been holding Ryan while the boat was moving, and then handed her to me when we stopped so she could get in the water...and that's when I saw IT.....the strangest and scariest thing I have ever seen in my life.

I saw that on Ryan's neck!! I immediately freaked out!!! I have never seen anything like this before. I told my mom we had to go and we got the boat back to the dock as quickly as possible. I kept looking for a bite mark somewhere on her body just praying that she had gotten bit by a bug and was allergic to it....hoping that just some benedryl and she'd be fine. That wasn't the case. Jay and I left (leaving Josh with my mom) and took Ryan to the Clinton County Hospital a few minutes away. As soon as we arrived, they got blood from Ryan's arm and took her straight back for a CT SCAN of the neck and chest. The chest was fine and clear of pneumonia, but the neck didn't look so great. It looked as if there was some form of fluid in her lymph nodes. The doctor in the ER thought this needed to be surgically drained RIGHT AWAY but he wanted Ryan to see an Ear, Nose and Throat specialist first. Well, they don't have one at that hospital. He called the closest hospital which was in Somerset (an hour away) and they didn't have an ENT doc there or on call. Next on the list, UK (University of Kentucky...yes like the college) Medical Center. This was 2 hours away and only about 1 1/2 hours from home. The doc tried to get a helicopter but they couldn't provide one because it had started raining pretty bad.....not safe enough to fly. So, ambulance it was. I got into the ambulance with Ryan, and Jay was going to follow in our car. The ride was 1 hour and 40 minutes, even with us going about 90 mph and going through every light and stop sign. Ryan slept most of the way there and seemed to be peacefull. She acted normal the whole time. It was like she didn't even know it was there. Jay was following the GPS directions which was terrible because it took him down nothing but back roads to get there. He never even got on the highway. It should have only taken him about 2 to 2 1/2 hours but instead, it took him almost 3 1/2. Once we got there, they wheeled Ryan back to her room in the ER on the stretcher. A doctor came in and just started asking questions. I've never answered so many questions in my life at one time. I was terrified. I really cannot remember the last time I was this scared.

I took this pic with my cell phone in the ambulance. The first hospital had marked it with a sharpie so they could keep an eye on rather it would get bigger or smaller. We sat, and sat, and sat in the ER just waiting. I was getting worried that something had happened to Jay, and he FINALLY showed up. He was, of course, not very happy about the time it took him to get there. He just wanted to be with Ryan and he couldn't be. She was sleeping when he arrived and the doctor's came in and asked MORE questions. It seemed like everyone just wanted to talk to us, yet they weren't telling us ANYTHING. It was about midnight when Jay had shown up...time was going way to slow. At 2:30 am, Ryan was wheeled upstairs so they could get an ultrasound of her neck. She had already had an IV in because she recieved IV steroids and antibiotics on the way to the hospital. The results of the ultrasound showed that the lump was nothing but swollen lymph nodes. Ryan was admitted and given more IV antibiotics overnight.
Once we woke up, after only about 3-4 hours of sleep, an infectious disease doctor came in to examine Ryan. He decided that his diagnoses for her would be.....MRSA. Yes....MRSA, as in the worst staph infection you can get that cannot be treated with most antibiotics. The type of infection that once you get it, it stays dormant in your body FOREVER until it decides to show it's ugly self again. The type of staph infection that attacks heart valves and lungs....IS THIS GUY SERIOUS??? HOW CAN THIS BE HAPPENING??? This WILL NOT be good for her heart AT ALL!!!!
But then again, what makes him think it's MRSA?
There are a couple different ways to test for MRSA...one being a swab of the nose. It actually takes 3 different swabs over the course of 3 weeks. One swab per week. The other way, is blood cultures. The strange thing about this is, although Ryan's labs were run twice (the second time they got blood from her IV) no cultures were ever done. They had only swabbed her throat, and that was negative for strep and mono. Is anyone else confused here??
If you answered NO to this question....there is something wrong with you!! :)
Ryan was discharged at about noon on Sunday, and we decided we were going back to Cumberland to finish our vacation. The doc had given us the ok to take her back so we were looking forward to being out on the lake again. We got Ryan's prescriptions filled before we headed back down. The prescription was for a VERY STRONG dose of Clindomycin. The only antibiotic that gets rid of the MRSA infection (although it will stay in your body forever, the meds can get rid of the current infection.)
We got back to the boat and finished our trip and had a really good time, although we were exhausted!!! Once we got home, yesterday afternoon, I decided to do some research on sudden lymph node swelling, and what I saw, made me sick to my stomach and I have felt this way since. I called Ryan's cardiologist today and discussed everything with him and he wants us to finish the meds that she was given...which smell awful by the way....and if her labs are still abnormal a week after she is off medication, then some more testing will be done. Her white blood count is high, her iron is low (they are saying she is anemic all of a sudden) her platellites were really high and her liver funtion is high. So, whatever it is that she has, it has started affecting her organs. The "thing" on the search that I did that has made me feel so sick...and the testing that Ryan will be getting if her labs don't become normal in a few weeks....Leukemia. Her cardiologist agrees that it would be a good idea to test for it if her blood work isn't back to normal after these meds. I am disgusted and terrified at the thought of this being the case, but it is a possibility and a reality that we just have to deal with. I will, of course, keep everyone posted. Please keep Ryan in your thoughts and prayers as we try our best to get her through everything. Thank you for everyone's love and continued support.

Tuesday, May 25, 2010

lots to talk about

Alrighty....it's been WAY TO LONG!!! We got a new computer...FINALLY! So, we are back. I can't say that I am going to update as much as I did before because being back to work full time is kicking my butt!! I'm so tired every night when I get home.

Ryan is doing SO GREAT in school!! She has a favorite teacher, her name is Katie. Ryan calls her "Tatie." She can say her ABC's now!!! Well, most of them. She does great with her colors too. She hasn't been at school this week though thanks to this little guy pictured below...

For those of you that do not know what this is....it's an optichamber. There is an inhaler that goes in one end and the mask goes on Ryan's face. She gets 4 puffs every 4-6 hours or as needed because she now has pneumonia. For the FIRST TIME EVER!!! For those of you with heart kids, you know what this means. We are VERY lucky that Ryan was not admitted to Children's Hospital after her peds visit Monday night. The x-ray came back with mild pneumonia and the doc says we caught in just in time. THANK GOD!!! We are going out of town this weekend to Lake Cumberland to go boating. The inhaler and antibiotics will be coming with us.

Mother's Day was great as usual. Jay brought me flowers to work on the Friday before Mother's Day. I also just got a new car....a 2006 Corolla S. VERY EXCITING!!! It's much better than the 1998 Chevy Cavalier that I was driving. It was a 2 door and my back couldn't take much more of getting Ryan in and out. Also for Mother's Day, I am getting a personalized liscence plate. It wont be here until December, but it will be the basic Kentucky plate and it will say RYS MOM. I cannot wait to get it!!!

Those are pics from our Mother's Day trip to the zoo. We had a great time!! I still have not caught up on everyone's blog but am going to try to get at least a couple in a day over the next few days. We are leaving Saturday morning for our trip so I should have time. I would love to post more but Ryan isn't doing so good so I've got to go for now. I hope everyone has a great weeked!!!

Wednesday, May 12, 2010

we are here

I just wanted to let everyone know that we are still here! Our computer has totally died on us and we are looking into buying a new laptop. I am updating on my cell phone and cannot do a whole lot. I promise I will post again. Hopefully soon. And I cannot wait to catch up on whats going on with everyone!

Thursday, April 22, 2010

update through pictures.....VACATION!!!

all the soldiers on family day

my brother, I'm so proud of him!!!

smoke bombs

looking for her "Untle Fun Bob" (Uncle Sponge Bob)

The soldiers coming out of the smoke

My brother is the 3rd one over toward the right in the front row!!

SO PRETTY!!!! She loved the Hibachi grill and the big flames.

and then came the beach....FLORIDA!!!!

Ryan and her cousin Logan (wearing Morgan's flip-flops)

holding hands while walking to the beach

me and my Princess!!!

Thursday, April 8, 2010


I'm sorry this update has taken so long but we have been VERY busy!!! Let's get right to it. Easter was GREAT!!! Ryan wasn't feeling well AGAIN/STILL Friday and Saturday but got a little better on Sunday. Thank God. She had fun finding eggs with her cousins and doing some arts and crafts too!! Here are some pics!!

she is spider man now!!!

new slippers :) courtesy of the Children's Hospital gift shop

That is not all of the pics that I took but you get the idea. She got tons of stuff from the Easter Bunny including the new spiderman backpack and blanket. The mask was given to her by our neighbor, Carter, who is 6 years old. They share the same passion for spidey.
I'm not trying to make this update super short, but once again, I don't have much time. Ryan's cardiology appointment didn't go as well as we had hoped. Her stenosis is worse. Her gradient on December 4th was at 41....last week, it was 48. Dr. Hor said he doesn't want to push another balloon procedure on her just yet because her right ventricle has not gotten any bigger since her last check up. We are waiting 6 months to go back. I took her to the peds office on Monday because she had blisters in her mouth and a rash on her back and chest. Any guesses yet???
Hand, Foot and mouth disease. They said she was already past the contagious stage and this would explain her not feeling well and running a fever on Friday and Saturday but not the high fevers for the past month that have done damage to her heart. So, when she goes back this Saturday, they are giving us a referral to see an infectious disease doc up at the hospital. UGH!!!! It really doesn't ever stop!!! I will try to keep you all posted.
On a lighter note....we are leaving on Tuesday!!!! When I get off work Tuesday at 4:45, I am coming home and loading up the car and we will start the 10-11 hour drive to Georgia to see my brother graduate from Army Basic Training!! YAY!!! After the 2 days that we will spend with him, we will drive 3 hours further south on Thursday night to Jay's parents condo in Ft. Walton Beach, Florida!!! We will spend all day Friday and all day Saturday at the Beach, then we will leave late Saturday night to drive back home!! I cannot wait to see my baby on the beach. It's going to be such a nice get-a-way!!! I will have TONS of pics of that too I'm sure!!!
Ok, well the princess is STARVING FOR ATTENTION since we don't see eachother that much anymore. GOTTA GO!!! I will eventually catch up on everyone's blogs!! Sorry :(
Hope everyone had a HAPPY EASTER and that everyone's weekend is GREAT!!!