Pray for Allie!

Ryan and I are so blessed right now that Hayden's health is strong.  The reality is, however, cystic fibrosis is a deadly disease.  I like to try to forget that and just focus on the positives but that is the truth.  Last year we lost a nine-year-old little boy to CF here locally.  Three years ago we lost a woman in her early twenties.  Now I need you to help me pray that we do not lose another.  Some of you reading this have heard me talk about Allie.  She is a young, vibrant college student and from the very beginning of Hayden's life I have been very attached to her.  Her father was one of the first ones to introduce himself to us at a CF benefit and we have been following  her story ever since.  Other than Hayden, Allie was the first face I could put with CF .  Her parents say that Hayden is so much like Allie:  funny, energetic and stubborn!  They have even called her "Little Allie" before.  I look at Allie and I see Hayden.  She  means more to me than she will ever know.  In 2007, Allie finally received a much needed lung transplant.  So many of us were on pins and needles for months while they waited for the good news that lungs had become available.  Every time I saw I had an email from her father I was almost scared to open it.  I wasn't sure whether it was going to be good news or bad.  I will never forget how hard I cried when I found out she was having the transplant!  At last year's Great Strides walk I actually got to meet her for the first time.  For me, it was like meeting a celebrity or something.  I almost couldn't believe she was there and that I was getting to talk to her.   She has been such a symbol of hope for me throughout these last three years.  Allie just posted a health update on her Facebook page.  She went back to North Carolina (she had her transplant there) for a check up.  The doctors discovered that she is having rejection -  a rare type where her antibodies are attacking the donor lungs.  Currently there are no anti-rejection medications available for lung transplants.  The following is from her Facebook page:  "I will receive a central line catheter (IV in heart) and get something called blood phoresis. This will take all of my antibodies out of my system and put in new good antibodies. Like a blood exchange. They will then follow up with immunogobulin (IVIG its like a protein) AND THEN finally after these treatments are done they will hit me hard with the final IV antibiotic called Rituximab on April 13th. This is all totally going to kill my immune system so I'll probably be very weak for a little while. This is all brand new research they have just found this year so its a big deal!"

Please pray for Allie.  Pray for her to keep up her strength and her fight.  Pray that the doctors can successfully stop the rejection of her lungs.  Pray for her family that they can stay strong through this tough time.  Pray that Allie will feel all the love surrounding her.  Please pray.

One of the reasons I love my daughter...

She is so stinkin' funny!  The things that come out of her mouth can make me laugh so hard  I completely forget anything about my day that was making me cranky.  I have been working on potty training off and on for months now.  I know parts of it have clicked for her but the part where she recognizes she needs to go all by herself?...not so much.  Anyway,  I praise her like crazy any time she uses the potty successfully and she usually gets something like a sticker or chocolate chip.  Yesterday she followed me to the bathroom (I can't remember the last time I used the bathroom all by myself!) and talked my ear off until she heard me "go potty".  She got so excited and said "Ohhhh, momma!  You went tinkle!  Come here so I can give you a hug.  You get two pinecones!!!"  If only I'd known how exciting pinecones were to her.  I could have saved a lot of money at Christmas!

Yesterday evening, she said "Yeah, momma, I just have something I need to do todaymorrow."  Ryan and I were wondering if that would technically be somewhere around midnight?

This morning she came up to me to tell me she put Baby Sophie (her bitty baby) in her stroller and said "I just don't know about her".

I realize that I will probably find these things funnier than anyone else on the planet but, man, she makes me laugh.  I'm still waiting on my pinecones, by the way.

Edited to add:  After bath this evening, while Ryan was cleaning out Hayden's ears with a Q-Tip, she looked at me and said, "Daddy's getting the poopy out of my ears."  Gotta love it.

Blessed by a stranger...

Well, not a complete stranger I guess. More like a distant acquaintance. I received a friend request on Facebook from a girl I went to high school with. She was a year older and a lot more popular and, quite frankly, I didn't even know that she knew who I was. So kind of like a stranger. After I accepted her friend request I started looking at her profile. I saw a link to a website for her daughter and clicked on it. Over the next half hour, as I continuously sobbed, I got caught up on this girl's life and what she has been through the past couple of years. Her daughter, who was Hayden's age, passed away last month from a disease affecting the mitochonria. I also found out through her profile that they had adopted a baby boy only to have the birth mother change her mind and take him back. In a matter of two months they went from a family of four to a family of two. The thing is, I never saw once anywhere on her profile or website a complaint. She talked about the blessings of her daughter and, as people were writing in with their prayers at the news of the failed adoption, she told them thank you but please pray for the little boy instead...that he was the one who needed them. She and her husband continue on in their fight to raise awareness and money for the disease that took their baby girl. I think that when you have a child sick with a disease it is easy to think it is the only disease in the world. Our lives revolve around Hayden's CF. Taking care of it, fighting it, raising money to cure it, etc. It was almost as if I had forgotten somehow that there are other moms doing everything they can to raise money and awareness for their child's disease too. It hit me like a ton of bricks that I need to do more. I shouldn't only be reaching out and supporting other CF moms but all moms who are terrified for their child's lives. Even though the diseases are different, I believe the fear and feelings of hopelessness are the same. I sent her a message asking her to let me know of any fundraisers I could attend of volunteer to help for. I know how much it means to me when someone signs up to help or donates to CF. To me, it is the same as them looking me in the eye and saying "I am going to help you save your daughter's life." We are blessed that Hayden's health is strong right now. So maybe I need to be saying that to someone else right now. Maybe that has been part of God's plan in giving me Hayden. That I would not only get involved with saving Hayden but help others try to save their children as well. All I know is I can't read something like that and walk away. Not when I've partly been there myself. I don't think she will ever know how she blessed me tonight with her outlook and her courage. If she can have that strength and spirit after losing two children, I certainly can.

No matter what, I am blessed...

It has been a rough couple of days. Ryan and I have had to come to terms with our financial situation and are looking at making some drastic changes. We will be selling large items, selling my car, etc. We were talking about selling our home and getting something smaller but my realtor friend did some numbers for me and discovered our house is worth less than we paid for it right now due to the economy. I am currently trying to think of jobs I could take on that would have flexibility for me to stay at home. It really is a difficult and humbling time for us. In light of this, I keep remembering that, no matter what material things we lose, I still have what's important. No matter what...I am blessed. I have an amazing husband. He is my best friend. He is strong, hardworking (that's an understatement),talented, sensitive and a wonderful father. Even in this difficult time we are rock solid. I have a wonderful child. I am so grateful that she is healthy! No amount of "stuff" is more important than that. She is strong, bright, funny, loving and an inspiration to me. Ryan and I have an amazingly supportive and loving family. Our parents and grandparents are always there for us and we are so lucky to have them, not only as parents, but also friends. Speaking of friends, I am surrounded by the best. My friends are there to lift me up, make me laugh, tell me like it is, help out when I need it, help me grow spiritually, and the list goes on and on. I have a loving God. He doesn't judge me for poor choices on purchases, He knows my situtation and the reasons behind it and loves me just as much. He hears my prayers and never leaves during the hard times. He has a plan for my life and doesn't make mistakes. He is an amazing God. These are the things that matter. This a hard time but, no matter what...I am blessed.

Who actually gets in a train wreck?!?

Well, I do, apparently. I just thought I'd take a few minutes to tell you about my Spring Break trip. It definitely turned out to be, um, different than I expected. My mom and I were planning on taking Hayden on the Heartland Flyer train down to Fort Worth. My dad was going to drive down the next morning and join us. Ryan was in NYC and we just thought it would be fun to hang out, stay, eat and shop in a new area for a few days. So Friday morning Hayden, Mom and I boarded the train. We were thoroughly enjoying it when, just south of Gainsville, TX, we had a huge collision. We actually hit a semi truck/tanker that crossed the tracks right in front of us. People that were standing at the time were thrown to the floor and multiple people were injured....including my mom! My mom had a bad car accident when I was in high school were she was rear ended at 50 mph and she had bad whiplash. I guess that left her with a weaker neck because a few minutes after the crash she started having super painful muscle spasms in her next and back and pretty soon she couldn't even move without major pain. (Just so you know, we are all laughing about this now!) Ambulances came on the scene and my mom was loaded on to one in a neck brace. Hayden and I rode up front and they took us to the Gainsville hospital. This may have been a blessing in disguise because I have no idea what time they finally sent buses to take the rest of the passengers on down to Ft. Worth. We had already been sitting there for two hours after the crash before the ambulance came. Crews were all over the place because we ruptured the train's gas tank on impact and there was deisel everywhere. Eventually they wanted to drag the train back to Gainesville and get buses to take people on from there but I know it was probably a long time before that happened. Mom eventually got released from the hospital with a diagnosis of whiplash and prescriptions for a painkiller and a muscle relaxer. Now for the next problem...my dad was in Stillwater at the time of the crash and Ryan was in New York. We were going to be stuck at the Gainsville hospital until my dad could get down there to get us. There was nothing to eat there and it was dinnertime and Hayden, who was such an angel through this whole thing (no sarcasm, I really mean it!), was getting restless, understandably. One of the sweet, sweet nurses drove us in her car over to the town's Walmart. It was there that we ate dinner and killed time for the next three hours until my dad could get there. Dad eventually arrived and we drove the rest of the way into Fort Worth and finally checked in to our hotel 13 hours after we started our trip! The drama went on with my whiplash starting to kick in and my poor dad, already sick with a head cold, getting a stomach bug while we were down there. It was such a relief to finally get home last night! I have to say though, it makes for a good story! It was much more excitment than we would have had on Spring Break! I find it funny that I am the actress for the Heartland Flyer commercials but the first time I actually ride it anywhere, we crash! Something to tell my grandchildren someday!

Static electricity makes for a really cool picture...

Hayden had so much fun playing at the park yesterday and especially loved the slide. I got the biggest kick out of seeing her come down every time because her hair would be standing on end by the time she got to the bottom. There is no wind in that pic! It's all static! Oh, how I wish the warm weather would get here and stay!!! Days at the park are the best!

When bad clothes happen to good people...

Hayden's new favorite thing to do before she emerges from her room after a nap is to completely re-dress herself...



Just so you know, highwater pants with apples all over them are going to be all the rage this Spring.

Well, this is not how I pictured spending my Wednesday...

...waiting for poop. Ah, the joys of motherhood! (I should warn you that if you are not a mom or someone else completely comfortable talking about poop, this blog entry is not for you. Just stop here.) Because of Hayden's CF-related digestive problems we are always having issues with her poop! (sorry if this is TMI) In this case, her enzymes haven't been successful enough at breaking down her food and an x-ray yesterday showed that she was VERY backed up. Let me first off say that I am so grateful it is nothing more than severe constipation because they were thinking it could be another bowel obstruction. Been there, don't want to do it again. So they prescribed her Golytely, the lovely stuff you have to drink before a colonoscopy. I was told to keep her at home the next couple of days and give her 3-4 oz. every six hours until she's running clear. Fun times! Well, of course a toddler isn't going to want to drink stuff so nasty adults have trouble downing it! I flavored it with crystal light powder but after one drink she handed it back to me and said "No thank you". I am not above bribery so, after promising her a Hershey's kiss and syringing all four ounces into her mouth a tsp. at a time (that's how she wanted me to do it), we had the first round down. I don't know what I expected but this hasn't been it. I was picturing a kind of Niagra Falls out her hind end. (again, TMI, sorry!) I just gave her the second dose of liquid and at this point we've only had one poopy diaper. So, I'm here, armed with my diapers, wipies, syringe and Hershey's kisses.....waiting for poop.