Sunday, July 22, 2012
Saturday, July 21, 2012
Hey Friends, I have changed the settings so that you can comment under my blogs without being a google user. I have had many of moms friends mention not being able to respond. I am going to blog tomorrow with new pictures. I promise it will make you smile as he is getting SOOOO big. I just wanted to give a quick and brief update tonight. I have HOPE for Hayden. I have had a week of HOPE. This week was spent in Florida on Monday and Tuesday. As you know this is heaven on Earth. On Wednesday, I had great friends bring us an awesome quilt that was made with all of Hayden's clothes from year one. Thursday was filled with lots of good moments. I made myself, mom, and Mrs. Angie a frame with his photo, handprint, and footprint. I love memories. I took him shopping. He received a happy. Hayden received an outfit from a secret friend. I sure wish I could thank you. It brings tears to my eyes that some people can be so kind. That night my sweet friend and neighbor brought us a yummy dinner. Little to say, our friends have been here to pick us up and keep us going. Friday, we had a birthday lunch for my mom at Scoops. They even gave him a T-shirt. Do you sense the Kindness? I got home to some awesome cards in the mail. Followed by our friends that invited us over for homeade sphagetti. We had the BEST week. We had SOME GREAT moments. We also met our home nurses. I LOVE them. I believe they LOVE Hayden too. Lastly, Dr. Davis, our neurologist called yesterday. He just called to check on us. WOW, he is awesome. He is not ready to just give up on Hayden. He wants Hayden to have more good days. He is going to talk to us about adding steroids next week. It is not a cure but could possibly make him more comfortable. I am all about giving Hayden the best quality of life possible. With steroids, he will gain weight. My back is already hurting from carrying him everywhere. I can get a new back another day. For the moment, I say let him gain and I will keep carrying :) I love my buddy. Today, I received a gift from a high school friend that now lives in Auburn. How perfect. A sign that says Do you know how much you are loved? Hayden is loved by people all over the world. I am proud that his tiny feet have changed so many people. After the experience in CO, I am reminded that tomorrow is not promised for myself. Just because Hayden is hooked up to a stat monitor means nothing. Only God knows his time and yours and mine. So I hope everyone will wake up and hit reality. Love your friends and family. Throw away the silliness and drama. Enjoy the moment. Appreciate every smile. Love every second. I am so thankful for each and every moment with my Hayden. God is good all the time no matter what. Guess what? I have HOPE for HAYDEN. I will continue to SMILE for Hayden. Sorry ASLD, we are still fighting. We ARE NOT GIVING UP! Thank you to the strangers and close friends that are the reason for this attitude. Your prayers are the reason for our ATTITUDE. Our church, First Baptist mentioned Hayden in the children's message last weekend. I know every prayer that was said this week was answered. Luckily, Brent and I are out of the hole. We are back to FIGHTING AND SMILING. Please please pray for good days with less seizures. Pray that ASLD slows down. Please pray that these teeth do not cause him any extra pain. Thank you for your faithfulness.
Wednesday, July 18, 2012
Well guess what? We are back home. It is definitely bittersweet. I love my family, friends, and my dog Marley. The beach is our happy place. Hayden is like a different child at the beach. His eyes focus. He smiles. His monitor stays steady throughout the night. Yes, this is why we have been to the beach 10 times in his precious 13 months. Trust me, if you have never experienced it you will never understand our happiness. If you have experienced a beach trip with us you understand. I cried today as we left the beach. You see summer is drawing to an end. Brent is really busy with work in winter. I know that our beach trips are fixing to start slowing down until spring. We are planning on one last trip with some Best Friends. As far as I know, that will be our last trip for the Winter. Most of you are probably thinking enough is enough. Once again the joy our family has in Florida is something that I can not describe. I cry just thinking about it. I told mom today that Dad will never be able to sell or replace our condo because the memories are SOOO SOOO precious. I can not wait to share some pictures from the trip tomorrow. I will update my blog with some pictures so you can experience our joy. I left in tears today because I know Haydens prognosis is so poor. I fear everytime might be the last time. This trip was extremely emotional. Hayden and I spent a little extra time in the bath tub last night. I do not want it to be the last time. Unfortunately, tomorrow is not promised for Hayden nor myself. Only God knows when our time will be. I do know that our worries disappeared while at the beach. Unfortunately, as we left they are back. We are home. We are back to reality. Worse part is Hayden has had more seizures today then all week combined. Really???? What in the world causes Hayden to do so much better in Florida. Hayden's seizures are on a rise. So please pray that he feels a little sense of Florida in Mississippi. I need my little buddy to have more good days. He is my little side kick. I LOVE good days. I am EMOTIONALLY tired of sad days. I do not HATE anyone but I HATE seizures. They are consuming our life. I am going to start counting down the days until our next Florida trip. Maybe this will help us get through the exhausting days. On the positive side, I have the best mom and grandmom in the world. They came to my home and cleaned for us today. They even hung photos and redecorated. Yes, they are by far the coolest people in the world. They always put Hayden, Brent, and myself first. Thank God for these two adult Earth Angels. Please pray for some peaceful days in Mississippi that have a little touch of Florida. We had the best vacation with awesome moments. Ahh.... I love my precious family. Go away seizures, stop bullying our precious child. We would love to have some awesome weeks. We are still fighting this ASLD battle. We refuse to GIVE up. We are still holding onto HOPE and claiming our MIRACLE. Each day is going to continue to be a special precious memory.
Tuesday, July 10, 2012
Well it looks like I am running into one problem after another with blogging on my IPAD. If anybody knows how to upload a photo please let me know. It will not let me select a file. Brent and I felt much better yesterday after being completely honest with each of you about Hayden's condition. We would like to thank each of you for your encouraging calls and text messages yesterday and today. So many people believe that I am strong. That I am continuing to hold onto HOPE. I think a lot of people think that we are "alright." I would like for you to pray that Brent and I can regain our sense of HOPE. We can void the conversation in which the Doctors had with us on Friday out of our memory. It is hard to place a smile on your face and continue to move forward when you know the outcome is so so so poor. Yes, we are exhausted physically and mentally. We can not go ten minutes without thinking about it. I am not sure about Brent but I feel like worries are consuming my life. PLEASE PLEASE pray that we can get our encouragement back soon. Please wear your Hope For Hayden bracelet and pray that NOBODY loses HOPE for Hayden. Please pray that God touches Hayden with a great big miracle. As for today, Hayden has had a pretty good day. We have had minimal seizures that we have physically seen. Haydens officially in a 24 hour seizure. Luckily, we are not seeing seizures 24 hours a day. I would say that I have only seen 3 or 4 today. Praise God. Hayden did a good bit of resting today. Thank you Jesus for allowing his precious bones to rest. Yes, we place a smile on face. Yes, we are alright. What are we suppose to do? We can not just give up. That is why I am begging that you pray that we can void Friday's appointment out of our memory before it consumes our life. It is not only consuming mine and Brents life but all of our close family that check on Hayden often. All of our friends that love Hayden like a son. I am so thankful for Megan, Whitney, Lisa, Lauren, Holly, Leathe and Kelli for being the best aunts in the world. I am so thankful for these girls have truly treated Hayden like a son. I know each of you will be awesome mothers one day. I can not wait to treat your kids like my own. As for your significant others, I am so thankful that they are not scared of Hayden. I am so thankful that they LOVE our angel with all of their hearts. I am so thankful that yall have spent a year including Hayden in weekend activities instead of just forgetting about us. A simple thank you will never repay this. These friends need prayers to as they are worried about us and Hayden. For Mrs. Dana, for a year of faithful scriptures and letters. They have often arrived on the best days. For all of my mothers friends that have cooked us fabulous meals, I am going to blame yall for my weight gain. HEHE not really, thank you all. For Mrs. Nita, for knowing what it is like and always saying the perfect things. These are just a few of the people that have really stepped up to the plate to help us get through this rolllercoaster. The rollercoaster is far from over because we are not giving up HOPE. We are going to pray to regain it! For our parents, grandparents, Jacob, Andrew, Robby, and Megan.... Each of them are trying to hold it together for Brent and I. It is not easy because they are watching us hurt along with loving sweet Hayden. Please pray that each of them can feel a sense of Hope instead of helplessness. I have said a dozen times before that it sucks to get a diagnosis with no cure because we can not fight. Cancer comes with a fight. ASLD comes with a timeline. NOT FAIR but you know what life is NOT FAIR.The one thing that I do know is Life is a Gift. Life does go on. I know that Hayden is the cutest kid on Earth. I know that he will always be my child. I often deal with the fact of loving the fact of being a mom. The fact of being a mom to a heaven angel but not on Earth is like taking a hammer to my heart. Luckily, I know that Hayden will be waiting on us one day with open arms. Guess what the best part of this is? He will be holding his head up and running free without SEIZURES. Praise God I HATE seizures. With all this being said, I just want you to know that even if we "look" happy we still need prayer for HOPE and ENCOURAGEMENT. Please contiue to pray that this disease slows down so we can have a rainbow and sunshine birthday next June. Thank you for your faithfulness.
Sunday, July 8, 2012
1st off I would like to apologize for the format of this blog. My lap top is dead and I'm typing on an iPad. Not easy! I will be purchasing the key pad today. I hate to share information on my blog unless it's exciting and upbeat. After all we have spend 13 months fitting in a lifetime. We have had family help us make memories. We've had some awesome friends that have never left our side. They've encouraged us, hugged us, cooked for us! Wow our friends are now considered family. I have best friends that I have never met. Christine, Jolene, tracy, and Courtney, y'all have been the first to know every detail of Hayden's progress. Why? Because y'all have been here for us daily. Not only when it's convenient for you. You have checked your emails daily! Thank you for being my new best friends. I would like to start by saying thank you for your faithful prayers. We are more appreciative than you will ever know. Thank you for your encouraging cards. Thank you for your donations to Hayden and his honor. Now onto specific prayer request and discouragement: 2 weeks ago Hayden had an EEG. The results were worse than the EEG in April. We added a medicine. The medicine has been unsuccessful. We went back Friday for another EEG. Dr Davis said he would call next week with the results. Unfortunately, we had a seizure that scared the whole EEG team. The results shocked them. They placed Hayden on oxygen. They called Dr. Davis into talk to us. The results showed significant progression in the past 2 weeks. SLOW DOWN ASLD! Please pray!!! We have known Since last July that Hayden's prognosis is early infancy. Unfortunately, I can not freeze Time. I have recently heard of a 9, 5, and 3 year old with asld. I HOPE Hayden receives this amount of time on Earth. Sadly, tomorrow is not promised. Not only for Hayden but all of us. The doctors can't tell us anything other than his disease is progressing. We need you to pray for this. Hayden is our angel. I'm not ready to give him up. The thought of him holding his head up makes me smile. The thought of him playing with toys brings a tear to my eye. The thought of him running around with all of his angel friends gives me HOpE. The problem is myself, brent, and the people that have shown Hayden love. We have so many more memories to make. So many more smiles to smile. So many more kisses to give. Please pray for peace and understanding. Please pray for our entire family. We are remembering God is good all the time no matter what. We are so thankful that God chose us to be the parents of his EArth angel.
Sunday, July 1, 2012
Wow! We are thirteen months! I am so excited about this birthday weekend! Hayden has enjoyed a weekend at the lake. You know how I am always talking about Florida being like Heaven on Earth? Well if I can’t be in Florida, I’ll settle for my second happiest place on Earth, the lake house! Today, we will celebrate with a sunshine cake. (The topper from his 12 month cake). Each month is a miracle. Each month is blessing. I am extremely proud of the Blessing of the 13 month birthday. Why? Because June was not a very good month at all L we had increased seizure activity. Our seizures have changed. His new seizures are very scary. We had one seizure where he instantly turned blue. Yup this is discouraging. The EEG results showed lots of negative results which I’d rather not discuss. We have been very discouraged. Sometimes, I just do not know how much one person can handle. UGHHH Luckily, we have such an awesome group of friends and loved ones that are helping us remember to take it one day at a time.
Please continue to pray for our 13 month Earth angel as we are going back to Batson this week. They were very discouraged with his EEG results 2 weeks ago. We added a new medicine. Well guess what? The new medicine is not helping. Hopefully we will see improvement in the EEG Friday. We will also get his feeding tube changed out. (This is a simple procedure every 3 months). We will be exhausted so prayers are appreciated. The positive part of this week is getting to see Amy and Ava Grace. Please continue to keep sweet Ava Grace in your prayers as she is still fighting for her life.
My goal from this past month is to remember that you never know which day will be your last day. I spent many days in tears and saddness. I had to quickly remind myself to smile and get out of the gutter. Make memories! Enjoy the moment! Hayden and I had a fun month of arts and craftsJ
Hayden makes so many people happy. He did flower pots with his precious toes!
Nona bought him a Life is Good shirt. He loves it. P.S. do you know the story behind "Life is Good"
http://www.lifeisgood.com/about/affiliates/. They are all about helping kids overcome special challenges. HMMM this is a great reason to buy a shirt?
Everything Belongs to God
The earth belongs to the Lord, and everything in it. The world and all its people. Psalm 24:1
You belong to God, and everything that is made or ever will be made belongs to Him. He is sovereign over all He has created to honor Him and be a blessing to those who love you and care for you. He wants you to know that He loves you and will love you forever with an affection that nothing and no one can take away. You are God's special gift.
He saves us from His namesake and for His glory.