Tuesday, August 14, 2012

Wow! It has been a long day. I am sure many people have a lot of things that they would LOVE to complain about. Yes, I am guilty of the same thing. I have found myself complaining a lot over the past 48 hours. Hayden has had some rough moments. He has been “snoring” really loud. His breathing has been rough. He has been crying a lot at night. We have had him hooked up to the monitor all day. Luckily, his oxygen and heart rate are staying normal. We had a blue spell yesterday. Thankfully, Hayden’s awesome nurse was sitting here with me. Thankfully, WE ARE HOME! WE ARE HOME! We are able to go and do as we please with him.  We are NOT IN THE HOSPITAL like so many families across the world. Some people are not as fortunate as us at this very moment. If you had time to pull up my blog, I hope you have time to join me in pray for Hayden and two special babies. Often, we find so much time to complain and fuss. We sometimes forget how fortunate our lives truly are.

First, please keep the Oakes family in your prayers as Ava Grace is going to undergo another surgery. She is the prettiest little Earth Angel. I held her last week! I must admit it was the best feeling in the entire world. She has fought so hard for her precious life. Her family has never left her side. She will be undergoing surgery tomorrow. She is having a VP shunt placement from her ventricles in the brain to the abdominal cavity. She has enlarged ventricles. Hopefully, this will stop the swelling. I have full faith that the Drs. at Blair Batson will take awesome care of her. I know that she will recover quickly. The problem is mommy and daddy. Surgery is such a fearful thing for parents. Please pray for sweet Ava Grace and her awesome family. Please continue to pray for her so that she can continue to grow, get stronger, and come home in the future. She is beating odds that nobody ever expected. HAYDEN IS PRAYING FOR YOU! STAY STRONG.


Next, a few days ago I saw a Facebook prayer request. I saw another request yesterday. Both of them were for the same family. I immediately found their page and began talking to the mother. I felt that I must share our story. She feels that her life is over. That she will never be the same. No, her life is not over. Yes, her life has changed because she is now the mother to an awesome, strong, and adorable Earth angel. This adorable Earth Angel will also be having surgery in the morning. The family from Tupelo is undergoing surgery at LeBonheur. I so enjoyed talking to Gunnar’s mom. I have full strength that their family will find a strength given by God that they never expected. I reminded them that when Hayden had his diagnosis, I hit the bathroom ground screaming HELP, HELP, MY LIFE is OVER. I screamed WHY? WHY? WHY? Not US. Not Hayden. I quickly reminded her that I quickly was able to realize that I am so BLESSED to be Hayden’s mom. He has made us realize how precious life is. I HOPE that if you are reading this you will pray for Megan and her husband. Please pray that they gain the strength to fight for Gunnar. Please PRAY THAT GUNNAR shocks all the Doctors tomorrow! Please pray that it is simply a scare. Let’s pray that the Cystic Fibrosis is the only issue that they will have to deal with. Please Lord; do not add anymore cyst, tubes, IV’s etc. to this baby’s life.  Please pray for this awesome family to stay strong as the Doctor’s take extra good care of their baby.

The Following Post is from Megan (as you read it you will shed a tear, you will be reminded how precious life is, and Hayden and I HOPE that you join this family in FAITHFUL PRAYERS):

From Megan......I have sat in the family room here at LeBonheur on the 8th floor where we are staying with our sweet baby crying tears I have never cried. Today has officially been the hardest day yet. I apologize for the long wait between updates, but I simply had to come to terms with everything on my own first before I could even begin to think about being strong, much less wrapping my head around it all. We are taking it one step at a time. We need our prayer warriors now more than ever. I've never felt so broken, so helpless, so tired, and so desperate for prayer in all my life. The only thing I can do to help take away some of the pain is to write, so here I am.

This morning the doctors came in and Gunnar was lying on his back and he was breathing as he has been for the past couple of weeks…loud and scary. His oxygen was fine, but we learned today that doesn’t mean that he is getting everything he needs. Dr. Schoumacher listened to his lungs and said, “It is definitely coming from his upper airways. His lungs sound perfect today. ” We were so happy to hear at the time that at least his lungs sounded clear today. Then he flipped him over and the loud breathing slowed down immensely. Dr. S looked at us and said, “Hmmm…this is a clue.” You could tell a million light bulbs were turning on inside his head, and you could most definitely tell that this threw in a whole different shaped puzzle piece into the mix. He quickly ran through everything that would be coming up test-wise throughout the week on Gunnar and left the room after answering a few of our questions. He looked as though he was on a mission.

Not long after my mom had planned to come with me so that I could go to the bank downtown leaving Gunnar with his PopPop, BB, and his daddy for a little while. As we were walking out the door we saw Dr. S and his assistant physician down the hall on the computer. I assumed they were working on someone else’s case, so Mom and I proceeded to the closest elevator. Both doctors stood up and held their hands up to walk back to our room. We walked back, and this is when we received the news.

Dr. S and Dr. H called in several other ENT doctors with them to revisit the DVD that was created during Gunnar’s bronchoscopy last week to see if there was anything that would cause him to be breathing better on his tummy. It was then that they discovered a tiny shadow on his windpipe. They said the shadow should have been much darker than what it is showing if the airway was clear. The ENT doctors agreed and they are now speculating and feel most confident that Gunnar has an extremely rare subglottic cyst blocking over 50% of his airway. On Wednesday, he will be put to sleep, and the ENT doctors will be doing what they called a rigid bronchoscopy to confirm there is a cyst. If there is indeed a cyst, Gunnar will be given a tracheostomy. The trach will stay in for weeks until it is healed. Once healed, he will go into surgery to begin the first step in removing the cyst. They told us he will be put to sleep around three different times at different times to remove the cyst laparoscopically over a certain period of time. The trach will stay in at least the first year of his life if not longer because they do not want Gunnar eating or anything through his mouth to stay clear of where the cyst was to allow it to heal. He will have a G-tube put in his tummy throughout this time for us to feed him.

Trach + CF = exposure to germs and infections that is even that much scarier to think about right now. The thought of possibly not hearing my baby’s coos and cries the first year of his life is devastating. What is even more devastating is that this has nothing to do with everything else going on. Dr. S said, “Unfortunately, this baby has one of many different problems going on right now…on top of having a chronic illness with Cystic Fibrosis.” This cyst is a completely new finding. While having the rigid bronch on Wednesday, we still have to address his lungs and heart. His left lung as mentioned before is being compressed by something pulsating (around the heart) against it making it that much harder to breathe normally. Well, today we found out that when they reviewed the DVD that Gunnar’s left lung is not just compressed 80% but more like 90%.

In addition, we have to continue treating the staph found in one of his lung cultures with antibiotics.

Also, we are still trying to determine whether Gunnar is aspirating his feeds which will be done in a long, more in depth swallow study which will possibly be tomorrow. We first heard this morning he would have this done at 2:00 today, but that was rescheduled once the possible cyst was found. Instead we were taken down to radiology to have a esophagram completed as the doctor’s wanted to rule out a vascular ring which we found out he does not have; however, they did detect something was pushing against his esophagus (“large indention”) which they think is either a large mass or an enlarged heart which will have to be fixed with surgery. This is what is also causing his lung to be compressed as well whatever it is. This is totally separate from the cyst and upper airways issue. Watching his tiny body being strapped down tightly to a board with his tiny arms being placed above his strapped down forehead…yeah, let’s just say it was not an experience we ever wish to relive. He cried, I cried...just plain tough.

All of this was told to us in that one little doctor room visit when we got pulled back to the room. Talk about a lot to take in for one day. This mommy and daddy are exhausted. Our request today is that you simply DON’T STOP PRAYING. We are not going to accept that this cyst is present until it is confirmed on Wednesday. They said if it is not a cyst it could be a number of things, but they feel most confident it is. Please pray this is not a cyst and our baby will not need a trach or a G-tube inserted in his tummy. I am crying out for help…and the only thing I know to ask for is prayer! After all, it is the most powerful thing you can give us right now. Please, I am begging you. PRAY. Prayer changes thing and miracles happen every day. Even the ENT doctor said we may be proven completely wrong when we go in there and to pray nonstop. Man, does it feel good to know that our doctors are believers! No one is touching my child that doesn’t believe. I am asking that each of you get on your knees and pray for my child. The doctors are praying for Gunnar, the nurses are praying for Gunnar…Gunnar will be healed!

Speaking of nurses, we have been so blessed. A special soul entered into our life when stepped foot into this hospital this morning. Her name is Lindsey. Lindsey has been through a lot including a car accident when her family was told she wouldn’t live. Even more…Lindsey had a trach. God placed Lindsey in our lives today for a reason, and I just know that reason was to help comfort me in knowing doctors do not know everything.

GOD IS OUR PHYSICIAN, OUR FATHER, OUR EVERYTHING. Only God knows His plan for Gunnar’s life. It takes one tiny minute, maybe less to share my post to your timeline. I want everyone that knows you, knows me, and knows Gunnar to PRAY. Spread his name all over this country. We need prayer and this family BELIEVES! Don’t spend a single second praying for me…pray for my child. Josh and I will be okay…we will get through this. Is it tough? Yes, it is a nightmare. I feel like this time in our life to enjoy our newborn baby is being taken away from us. BUT…you know what? We can’t think like that. Gunnar is a blessing! He was given to us for a reason, and we must celebrate! Celebrate that God is doing BIG things in our lives and give him all the glory for everything He doing for my baby.

In prayer and In His Grip Always,
Gunnar’s Mommy -Megan G. Herndon

Lastly, thank you for checking Hayden’s blog tonight. Please continue to pray for our precious son Hayden. Please add sweet Ava Grace and sweet Gunnar to your prayers. Together, we can see miracles occur in all three of their lives. We must believe in miracles to receive them! Lastly, Facebook friends follow their progress on “The Gift of Gunnar” facebook page. Let’s show this family the love and support that they deserve. I am so thankful that God chose these awesome parents to take care of his awesome Earth Angels. I must say I watch Hayden seize daily. I get frustrated and angry. I cry and lose strength. When I see families undergoing surgeries, I am reminded life could be much worse. Take one day at a time. If it is a bad day, take only a half of a day at a time. If work or school makes you angry, remember life is a blessing. Tomorrow is not promised. Enjoy each moment. Make each day a special memory. Thank you for 14.5 months of faithful prayers and love for our family.

Monday, August 13, 2012

We survived another fun filled weekend! Hayden enjoyed Friday night with his Nana, Papa, Jacob, Andrew, and of course Brent and I. We took him to Lost Dog for some yummy pizza. We then went to the lake with friends on Saturday. It was 85 degrees. We definitely enjoyed ourselves! Sunday, Hayden was kind of “scaring” us. He was breathing at an odd pattern. He slept most of the day. His Aunt Whitney came to the rescue to watch him while I went to Wal- Mart. WOOO Thank You Lord for helpful friends.

We had a party to plan! Hayden is so blessed to have so many awesome friends in his life. I can tell you that he is loved by so many. The bond that some of our friends have with Hayden is amazing. I can promise you one thing; you know you have genuine, caring, and kind-hearted friends when they don’t leave your side during difficult times. In fact, they get that much closer to your side! Hayden woke up so excited about the PARTY. I believe he thought it was for him. I kindly explained to him that he has 2.5 weeks left until he is 15 months. He promised me that he would be patient. We cooked and waited on Hayden’s “Aunt” Kelli to get here. She had NO CLUE that a lot of her friends and family would be waiting here on her. We had a grand time. Hayden and Cash were swapped from person to person as everybody enjoyed baby time. We laughed, ate, and enjoyed each other’s company.

My nephew never wore this outfit so Hayden glady borrowed his outfit. So precious on him! I love the high button outfits. He was excited and looking forward to party time!
"Aunt" Leathe came two hours early so she could sneak a lot of loving.


 He was so excited to see his friends! Hayden loved all of the love that Brianne had to share!
 Happy Birthday Kelli! We are so thankful to have friends that loves our child like you and Clayton do. Thank you for being a shoulder to cry on, a friend to laugh with, and a loving person to our child.
 I LOVE that all our friends are still wearing their hope bracelets! All the guys are still proudly wearing them. We must admit it warms our heart:)
Even 31 year olds can eat cake and blow out candles. Hayden was still slightly confused as to why we were singing to her vs him. He thinks ALL parties are for him! He did get a bit of the ice cream though:)
 Sweet Jordan has texted many days to check on Hayden. Her encouraging words have been very helpful on bad days. I am so thankful that she was able to meet Hayden! I know he loved her!
 Hayden was thinking really hard about what to give Aunt Kelli for her birthday.
We thought about gift certificates. We thought about clothes. HMMM? What should Hayden get her? We finally decided that the best gift of all would be his feet on a stepping stone. Yes it made his Aunt Kelli cry big crocodile tears.  She loves Hayden so much. I got some pretty ugly looks from his Aunt Whit and Aunt Lauren. I believe they were jealous! Looks like we will be making more stepping stones for Christmas gifts this week! I am so blessed to have such caring friends. Hayden is so blessed!
I found the following quote on somebody’s Facebook this morning. It truly reminds me of my life. I have learned who cares. I have learned who loves. I have learned that most of our friends are closer to us now because of their love for Hayden. I feared at the beginning of his diagnosis that we would lose friends young and old because they wouldn’t know what to say or do. I feared they would just run away.  Luckily, almost all of our friends have become more like family because of their bond with Hayden. Our friend’s text daily to encourage Hayden to have a good day. Each friend is a blessing to our life. Each friend has become more like family. They have all encouraged us more than we could have ever imagined.  They have cared for us on the good days but more importantly the bad days. I am so thankful for each weekday and weeknight that our child gets to share with our awesome friends. YALL ROCK! THAT’S EXACTLY WHY HAYDEN LOVES EACH OF YOU SO MUCH! LOOKS LIKE WE WILL BE ORDERING MORE STEPPING STONE KITS TODAYJ EACH OF YOU DESERVE ONE!
Hayden has seemed pretty peaceful in the past few days. His hands have been opened more often. He has even been smiling. We are still seizing. Fortunately, only around 6 times a day. Yesterday, he was seizure free until 6:00p.m. We almost had another 24 hour day! This is a huge little miracle. Hayden has been using the restroom on his own. This is huge too! Normally he gets constipated before going to the restroom. All in all he has been feeling good. He is officially 30 lbs. Can you believe it? He is one growing little Earth Angel!

Friday, August 10, 2012

Well 14 months is here! We are so thrilled about his “rainbow and sunshine” party. Hayden has monthly celebrations. Sometimes the celebrations are just family. Sometimes it is just friends. Every so often it is a group of close friends and family. This month was perfect. Hayden had a devastating doctor’s appointment in July. So what better than a rainbow party to make a wish for our angel?  Of course, The Sweetery Bake Shop would make the most perfect and delicious cake. The friends and family would love sneaking sleeping baby kisses from Hayden. All in all it was a wonderful and exciting night to celebrate the life of an earth angel.


We started planning for his get together the week before. Hayden wanted to make a special Happy for all of his buddies that attended his party. He decided to make them a thank you card for attending. He used his ink bad to stamp his feet onto cardstock. We decorated the cards to match the theme of the party. We then decided that we would place his picture on the card. I am sure these are hanging on many refrigerators around town. We wrote, “Thank You for 14 months of faithful and hopeful prayers.” Love Hayden






We had a large turnout. Friends and family filled each room throughout mom and dad’s house. We ate great food and talked about next month. Hayden has impacted so many lives in his precious 14 months. I can promise you this much. He has touched more lives in 14 months than I have in 26 years. He is a true Earth Angel. I know he has changed mine and Brent’s attitude about life. I will now consider each day a blessing thanks to him. He is such a reminder of true joys and blessings.

My mom, mother in law, and grandmother helped prepare all of the yummy foods. We had food left over for days. This was great though because it meant that we did not have to cook for awhile. Hayden shared his cake with all of the neighborhood friends. It was delicious. If you need a perfect cake, Contact The Sweetery. They are amazing people!

Family, Family, Family! Hayden definitely has a lot of love and support. This is only a small portion of the family members that attended. Hayden  is loved by each and every one of them. The one thing about our family is that they love to check on Hayden. They all call each day. They will do my grocery shopping. They will do our cooking. They will do our runs to the pharmacy. Anything that helps make our day easier! Family has been a huge part of support. Brent and I are faced with this daily. We can not just “pretend” that Hayden is “okay”. Family has been there to talk with us about our future. We are thankful for the MANY listening ears.


KIDS! KIDS! KIDS! The children love Hayden. Hayden has taught many of his buddies about love. Hayden has taught the Oakes girls how to pray. They are always encouraging their parents to pray for Hayden and Ava Grace. It is awesome that 3 and 2 year olds are reminding their parents to pray for Hayden. I mean WOW! Usually it is the other way around. These children love Hayden. The bond is amazing. They know that Hayden is mighty special. See, that’s why these children are here to help him! They helped us sing Happy Birthday to their sweet little buddy. I am so thankful for all of the kids that love Hayden so much. My nephew is always asking for Hay Hay and recently started saying My Hayden. He relates all babies to Hayden. He knows to be soft and gentle with him. He loves his HayHay. The Warrington girls have made Hayden welcome home cards, sent him cards from camp, and gone over and beyond. They rock! Hunter and Hayden are good buddies. The "plan" was that these neighbors would play on a dirt pile together. Instead, they are totally different types of kids. Thankfully, we still allow them to love each other. They still have a good time together. We can not wait for Hunter's One YEar old Birthday bash!






Kids from all over the state of Mississippi love Hayden. I taught with the sweetest lady in the world. She moved to Columbus two years ago. I am so thankful that Dana and I have kept in touch. Her little boys made Hayden a Pinterest activity using their own baseball. We now have it hanging in Hayden's room.



Our Earth Angel! Hayden has made us grow up into people that I never imagined. I loved hanging out with my friends. I loved doing for myself. Now I care about NOTHING or NOBODY unless Hayden is involved. I understand that this is very dangerous to my well being. Unfortunately, for the moment I am still focusing on giving Hayden my all. My friends that truly care about us don’t mind hanging out with Hayden on the weekends. In fact, they LOVE having him around. Our friends understand why Hayden is always with us. In fact, they would not want any other way. Brent and I LOVE taking Hayden everywhere. We are not the least bit embarrassed or ashamed. We are probably the proudest parents in Washington / Bolivar County. We LOVE our Earth ANGEL. We LOVE every SECOND that we get to spend as a family!

P.S. Hayden slept peacefully through his whole birthday party. I guess this was our sign that it was going to be a pretty "darn" good month!Sleeping Peaceful Equals warm Hearts for Mommy and Daddy!
Thank You God for this special night of memories that are etched into our hearts forever.

Thursday, August 9, 2012

Brief Update

Well, I am so excited that this should be my last blog update from my IPAD. My lap top should be up and running this weekend. Guess what this means? Lots of pictures in my upcoming blogs. Also , proper formats. The IPAD does not allow me to do paragraphs or skip lines. So my blogs should be easier to read in the near future. Well Guess What? It is August! I am SOOOOO excited that we just celebrated his 14 month birthday. We are so pleased. Mommy is just a tad bit down lately. I am sitting at home more because he is too heavy to take everywhere. I am use to working and being busy. The walls are closing in on me. I am so excited about Fall but I  am also terrified about the season change. I am sure you are asking why? Well, Fall means HOLIDAYS. I LOVE to dress Hayden in styling seasonal clothes for Halloween, Thanksgiving, and Christmas. I am TERRIFIED beyond measures to buy clothes for these holidays until the month of. I just can not imagine the holidays without Hayden. I can not imagine how we will go on. That is why I am asking you to help us pray our way to our next miracle. I usually pray for one more day. I usually just ask to make it to the next month. I am wanting to pray for a leap of many more days. I am wanting to have Hayden here for the Holidays. He is looking so good. He is cooing so well. He is our litltle Earth Angel. I spend 24 hours a day suctioning him, monitoring him, medicating, bathing, doing vitals etc. It is a tough job that I am not ready to give up. I LOVE my JOB. The reason I am mainly terrified about the holiday season is the cold air. I am going to do my best to keep Hayden well. Pneuomonia would be very dangerous to Hayden's precious lungs. Fall also means Football and a new school year. This is my little brothers senior year. He is such an awesome young man. He deserves an awesome senior year without the heartache and worries of his first and only nephew. We have lots of adventures and lots of memories to make. I am holding onto HOPE that Hayden will keep fighting this journey. I have cried more tears lately. I feel exhausted and overwhelmed. I am so thankful for my friends that have called, texted, and come to visit us weekly. It is unbelievable! Just a simple text message can warm our heart if we are having a bad moment. I can honestly say I have learned that we have some true and genuine friends both young and old.  I can honestly say that we have the best group of friends. I can not begin to thank all of my mothers friends, my grandmother, and my friends for the fabulous meals. This has allowed us the opportunity to spend more time with Hayden. Thank you notes are coming. Hayden will be writing them so they are taking a little bit of time ;) Be patient because you will LOVE them. Praying for less tears and more happy moments to get us through the Fall Season;) Also, THANK YOU to everyone who wears their HOPE bracelets 24/7 I notice them in Facebook pictures, WalMart or even in public. It warms my heart that so many of you have not tucked them away in your dresser. I have HOPE that everytime you wear your bracelet, you say a precious prayer for our angel. I still have a few ppl that Im not forgetting about. I just have to make my way to town. I WILL get them to you SOON:) Your faithfulness is appreciated.

Sunday, July 29, 2012



I so feel prayers being answered in our life. Hayden is so so so sick. Yet he is still developing bonds, memories, and enjoying each moment. We had a few days after our last terribe Doctor's appointment that I just wanted to hybernate. Thanks to each of your prayers, we are back to more smiles and less tears. Thank you friends for your faithful love for our family. Pictures above are from our recent beach trip. As you can tell Hayden loves his home away from home. We hope to make one more trip before we conclude our summer vacations. Well back to Hayden. Hayden is still having seizures. UGH REALLY. NO WE CAN NOT CATCH A BREAK. I refuse to give up on a believing that one day we will have a seizure free day on Earth. I have faith that God is going to grant us this simple miracle in his difficult life. We added a new medication last Monday. We have seen a seizure decrease. We are probably around 10 a day vs. 25 plus. This is a huge difference. We are potentially adding another medication this week. Yes, my brain is full of times, dosages, and adminstering meds. We had many friends bring us meals this week. Thanks to each of you for a huge help. Hayden is getting more difficult to load up and take to town. We are beginning to stay home a little more. He is just so heavy. My back hurts if I do something without Brent's help. Plus, Hayden is not handling the Mississippi Delta heat very well. Each day, I wake up and smile. God is giving me another day. Thank you God for allowing me more moments with Hayden. THe problem is I am always going to want just one more day. I wish I could just stop time. I love my life. I love everyone in it. I have such awesome friends and family. We only surround ourselves around caring, loving, and nice people. It is awesome to have SOOO many loving friends that are helping us with Hayden. The cards, random suprise gifts, the meals, the calls, the emails, the messages are so appreciated. The Mississippi Delta really knows how to care for people that are hurting. We are so blessed to call Greenville our home. The friends, family, and strangers that care for our angel make it worth it! We continue moving forward with a smile on our face thanks to each of your caring words and attitudes.

Sunday, July 22, 2012

Happy Birthday Nana


Last year, We were discharged from the hospital on my mom and best friends birthday. Were we excited? No. We were devastated. We could not celebrate. We were crushed into a million pieces. Our dream child was sick. He would never walk or talk. He would become our Earth Angel. We did not realize at that moment how blessed we were. Our life was over. Hayden was suppose to be our little football star not our Batson Children's hospital star. Why is this birthday so special? We had so many moments that we thought Hayden would not be here on her birthday. Nana is so special to Hayden. Nobody can come close to their bond. (not even Brent or myself) Hayden has a special bond with her. My mother has bent over backwards for 14 months. She has done more than any mother would ever even think about doing. She has been my rock. She is my backbone. She encourages me to take a break. She makes me smile. She volunteers to give Brent and I breaks so we can continue to breathe. She will insist until we take her up on it. She cleans my cluttered house. She calls me every morning. She sacrifices all her fun plans to spend time indoors with Hayden. Hayden can not do the normal things that I wish he could. It is so so so so hard to watch everyone do these fun summer things. Hayden and I just sit back and watch, wish and dream. Nana is to the rescue. She takes us shopping. We all snuggle in her bed and watch tv. She is not only the best grandmom but an awesome mother. I never thought that she would put her entire life on hold to help me through the most difficult time of my life. Many of you have told me that I am strong. Well it is only because my mother has helped me and encouraged me. She has cried with me. She does not pretend like everything is okay. She tells me how worried she is about my future. She is open. Her open heart is why Hayden and I love every moment with her. Hayden looks straight into her soul. He is encouraging her to stay strong for his mommy and daddy. He knows he can always count on his NaNa to do anything he wants. He fought so hard to spend the day with her on this beautiful July day. I thank God for the moments that my child is getting to spend with my mother and father. I thank God that they are there to only treat Hayden as a normal child. I thank God that Hayden is their favorite kid in the world. The love our family has is amazing. Thank you God for allowing Hayden to sing Happy Birthday NaNa. We are praying and looking forward to next year.

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.