To get caught up, I am just blogging a few of my FB post to catch everyone up...
Channer had a sweat test (testing for Cystic Fibrosis). A shot in the dark if you would have asked me but they were worried about several signs, the worst being "failure to thrive". Channer was weighing in at 71 pounds at 13 years old. The first test came back "Borderline High" so we were asked to come back for a second test to make sure.
November 4, 2010
10:08 a.m. - As I sit here in this lonely cold MUSC waiting room, holding onto the last straw of hope of good news, I am thankful for the kind lady behind the desk that remembers my name & face every time we come in. She is the bright smiled lady that wisphers peace my way, letting me know that I CAN do this. No matter what the docs tell us this time, WE CAN do this. All made possible by her simply smile.
3:36 p.m. - MUSC just called with results. It has been confirmed. It is Cystic Fibrosis :( My poor little man.
9:12 p.m. - Thank you for all of the encouraging words and prayers. It's been one heck of a day. A lot to digest in one day. We have already received a call from our "nurse manager". As devastating as this news is, we are thankful to possibly have an answer to things that have gone unexplained for so many years. Back to MUSC tomorrow for further testing. This round of testing will tell us what genes are affected. Please continue to pray for our family. Channer is a very happy young man with a special sparkle. I won't let anything take that from him!"
November 5, 2010
7:35 a.m. - Just woke up and had that moment when I jumped up in the bed thinking I had a REALLY bad dream {sniffle, tear, sniffle}. Nope! Not a dream. Now I will go take a shower and cry really hard so my kids can't hear me. Then I will pull myself together and get back on track.
8:01 a.m. - I should be a pro at this by now. Just yesterday I told someone to fake it till to you make it and I haven't even been taking my own advice.
11:26 a.m. - When the doctor explained that the blood work was to find the correct mutation and that there were 1500 of them, Channer says "Well, I hope they find that there are 1501 and name the new one after me!" We all laughed so hard. He has been all smiles. I know he doesn't fully understand all of this but he just keeps saying how excited he is to finally know what causes him to be so skinny. He is looking forward to the "fix".
November 6, 2010
7:42 a.m. -Nights R the hardest when laying awake & there is not a single sound N the house. Nothing 2 distract my mind from thinking about all the "what is's & whens". My ♥ heart ♥ says we will fight this just like everything else, my mind races & takes reason away. Soon I find myself wiping the tears again. I could have never imagined @ 22 yrs old how much I could possibly love this little guy.
November 7, 2010
10:16 a.m. - Going to church. Will be praying for my family...our son especially. I usually push right through things and tackle them head on. My heart is so broken. If you see me smiling, it's fake
November 10, 2010
7:30 a.m. - Jenna says in the car this morning with a tear in her eye "Mom, I am really glad that I have a family that believes in God because it makes it so much easier on me since I love God so much." Needless to say.....I then had tears in my eyes. She gets me everytime!
December 13, 2010
11:11 a.m. - The docs just took Channer back for his tests today. Magic gas that smells like Dr. Pepper? LOL, he loved it. Praying they find what they need to help us out. A little upset that they insist we test Jenna for CF :( I can't even imagine the possibility of both children having this. {sniffle sniffle blow blow}
December 14, 2010
1:45 a.m. - I can't even begin to tell you all of the amazing things that are happening in Leckieville today. I'll start off with an email from Channer's teacher "Channer just finished the math portion of the MAP test. In the spring (probably march) he scored a 174 and I just read the test to him and he scored a 208!" Over 30 point increase!
December 28, 2010
7:46 a.m. - Took Channer today for yet another full day of testing for the CF clinic. You know it is never good when your cell rings before you can ever get home, the caller ID brightly lit up with MUSC on it. Am I aloud to be tired? I hate that feeling in the pit of my stomach. I need cupcakes, no...chocolate...or how about CHOCOLATE cupcakes!
December 20, 2010
8:22 p.m. - I cannot believe that my baby is going to be 14 this week! Wow, 14 years ago I was blessed with a beautiful blonde hair, blue eyed, Angel. He has taught me so much...especially how to see happiness and feel joy...no matter what!
January 10, 2011
2:58 p.m. - I just watched the Temple Grandin movie with my children. Wow, what an amazing story!! Amazing to see my children seeing ourselves in that movie and to see how they too have gifts that make them "Different but NOT less". {sniffle sniffle} A must see, opens your eyes, gift a gentle reminder of our purpose and how each door we open is just the begining of another opportunity to make a difference.
January 12, 2011
2:02 p.m. - Went to a routine appointment for Channer...oh wait a minute...nothing in Leckieville is routine. Found out that he needs sinus surgery in the morning and they will be doing a cilairy biopsy as well. Jenna had already been scheduled for her CF sweat test in the morning for the same time. I am becoming a pro at reading the doctors faces before they tell me bad news.
January 13, 2011
1:43 p.m. - Channer is out of surgery. Poor guys had a rough day. Mommy will take good care of him. Now just waiting for the phone to ring on results for Jenna's sweat test this morning. Ring phone...RING!
4:50 p.m. - Jenna's results are in! They are normal!! Praise God!
January 19, 2011
6:28 p.m. -
Each day is precious. Tell your family how much you love them, remind your kids how special there are to you, and never take a minute for granted. Tomorrow may not come, its not promised. "Live, Laugh, Love"
February 10, 2011
1:59 p.m. - Not so good email from Channer's school. Soon after, not so good phone call. UGH, boo, sad face, tear :( Days like this are so hard. I know each day is so hard for him and he is so bright, lights up a room with his humor, can't just one thing be easy for him? For us? Is that too much to ask?? He puts a new meaning to "creative parenting". I'm running on empty.
February 11, 2011
6:27 a.m. - Today is going to be a good day! Woke up to great news. Also, I am so proud of Jenna, she gets breakfast and lunch served to her because she passed both benchmark tests. Channer has a new outlook on responsibility after last nights family meeting. I know he will do great today!
February 16, 2011
9:12 a.m. - My kids didn't sleep last night, by 8:30 a.m. I have laundry going from my niece wetting the bed and I have cleaned a bathroom from my son clogging the toilet and somehow managing to allow it to explode EVERYWHERE. All the while, Jenna stands there tapping her foot, saying "This is gonna be a long day". Ya Think??!!!
4:15 p.m. - Was walking into yet another weekly visit to MUSC with Channer as my phone rang. The Cystic Fibrosis clinic found the mutation. The girl softly says, "I'm sorry to have to tell you..." IF I HAD A DIME FOR EVERYTIME... Next thursday we officially start treatment. It is no surprise to me that he has such a rare form that it took this long to narrow it down. Only in Leckieville.
February 19, 2011
12:29 p.m. - I say "Channer!!! Please eat, just shovel that crap in!!" (for those of you that don't know, getting him to eat is a fight ever day). He says back to me "Mom, a nice way to say crap is.... feces...." He had the straightest face and was very serious. How could I not laugh?
February 20, 2011
8:25 a.m. - In the last couple of years, the bottom has fallen out of my life. Staying in Christ, I find myself coming out twice as strong today. The doors were opened for God to restore double back to me. Even when it looks impossible, keep that smile. God is in control! I am in a happy place. Back breaks will not keep me down. Get ready and watch Him continue his work in me :)
February 22, 2011
8:08 a.m. - At my wits end & need guidance with how to handle the behaviors that are being presented by my extremely intelligent 14 year old special needs child. 2 hour rages are exhausting. How can I effectively & rightfully punish him with him not understanding cause and effect? While his words present intelligence & understanding, his actions clearly show he is clueless. What form of punishment is effective & appropriate?
February 23, 2011
9:42 p.m. -
Not looking forward to the sun rising. That will mean it will soon be time for me to sit at that long table in the 3rd floor conference room at MUSC with a team of doctors to review the start of our CF treatments. A conference room is throwing me for a loop. Why not an exam room? Praying for strength.
February 24, 2011
6:17 a.m. - Yesterday I sat with the neuropsychologist to review progress if any over the last two years. Call me crazy but I took his comment as an insult but after sleeping on it, I now realize that it was the best compliment ever! After telling him our journey to Duke, Yale, and Therapies (paid for or self created), all in hopes of regaining skills & finding answers to the bomb shell diagnosis he dropped in my lap on my birthday. He looks at me & says "Wow, you have done more than I even knew existed, you can probably teach me a few things". I was upset about this comment because I had looked to him as guidance & I instead I had to go fishing in the dark. This morning I realized, how amazing it is that I did this. All on my own. Maybe I will TEACH him a few things!!
1:43 p.m. - Just got home from MUSC, feeling so very nauseous, almost had to excuse myself from the room for a minute. I know the right things to "think" and "say" but I need to be REAL right now, just for a minute. I feel so dumb! How could I have not known that my son had this disease? Why didn't I see the signs? How could I have been so stupid not to educate myself exactly as to what this disease is or does. What now? On top of everything else, how do we keep pushing forward. My head hurts, my heart hurts, and I know things can be a lot worse but right here, right now, this is my breaking point.
4:46 p.m. - At Walgreens "Mam, did I hear you right??!! That one months supply of the medicine to help save my sons life is $3000??!!!" SERIOUSLY! My emotions are all over the place and this poor pharmacist is about to feel the blow of my gasket :(
February 25, 2011
7:42 a.m. - Here son, take these 12 pills for breakfast...I mean WITH your breakfast. Oh ya, & make sure to eat all 1000 calories that I have on your plate. A brain injury and CF.... who gets this lucky? Leckieville does! Yes I know there are a million things to be positive for, I know God has a plan BUT that doesn't take the initial hurt away. Put yourself in my shoes for one minute. Thank you friends for the support. I need it!
10:24 a.m - We just took the next 4 pills with our snack. He has already broken down in tears saying he doesn't want to take these for the rest of his life. We are only one day in, not even half way through. My poor baby. The one that always smiles and reminds me how to see the sunshine in the rain is hurting inside. That is the worst feeling. I need to fix this! I'm so sorry for being negative, I really am. I know there are many other people worse off than us but in my world right now, it's nearly too much to grasp.
February 27, 2011
8:00 a.m. -Today, I wake up REFRESHED. Even though I didn't sleep at all, God has poured peace upon my heart and I am ready to fight! Ready to do good things with my gifts! I am so blessed to mean so much to my Lord & Savior that I have been given more opportunities than one deserves to serve Him with my testimonies and experience. Leckieville is here to stay and I am PROUD of it!
