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Thursday, January 26, 2012

OFTEN ASKED QUESTIONS:




Have you ever wondered if Hayden has tried more than one medicine to stop these seizures? Does Hayden take any medicine for his seizures? Does Hayden have a feeding tube?  Does Hayden do therapy to help with delays? All of these questions are asked weekly. Hayden is on four seizure medicines and one acid reflux medicine. He also has a fifth seizure medicine that we use in case of emergency medicine. He takes a LARGE amount of each of the medications. He takes each of his medicines two times per day. We have tried almost EVERY seizure medicine possible. I have a hard time understanding how we can have 10 to 25 seizures each day with all of this medicine. What would life be like without all of the medicines??!!?? Scary thought huh????
I have one medicine that is a sprinkle. Mommy and Daddy place it in with my baby food. I am SMART! I close my mouth tight when its medicine time! I dont like bitter medicine!

 
Usually feeding tubes are associated with sick children. I am not here to say that Hayden will never end up on a feeding tube. I am here to tell you that at this moment we are enjoying formula and baby food. I remember being in the NICU feeding Hayden for my first time out of a “bottle.” The nurse said that I must allow Hayden to consume the two ounce bottle in a maximum of thirty minutes. He just kept falling asleep, looking at me, or lightly sucking. I was so discouraged. My first time to feed him should have been a pleasant experience. Instead, I felt like a new mom that was LOST. We came home from the hospital the following day. I had sterilized all of his DR. BROWN bottles. My FAILURE feeding was soon back. He refused to eat for me. My sister in law informed me that it took her forever to find a bottle for my nephew. She went out and bought a bunch of bottles. They were all failures! Madelyn Cook came to visit. She had the solution and gave me a new bottle out of her car. Once again FAILURE! Kelli and Clayton gave us a gift basket full of necessities at the hospital. They gave us our LIFESAVER. A medicine dropper with a nipple! He took it PERFECTLY! The only problem was that it only held a half ounce. Feeding was a two man job. Brent would feed as I would prepare more milk into the medicine dropper as it got empty. The problem was that it was too COMPLICATED. 


We settled with the NUK for a while. Feeding Hayden was not much fun! I talked to a speech therapist. She actually made me feel better about the feeding tube. We were real close to scheduling his appointment. We schedule a suck and swallow test at Batson! He past it with FLYING COLORS!!! Are you serious Katy? How could this be possible? She said he needs a thick consistency. My grandma came up with the solution that now makes feeding ENJOYABLE! (well except for when he spits it back on usJ)

Haha--- this is a joke! She really DID come up with the solution! She found a baby food feeder made by munchkin. We mix baby food and formula together to gain a thick consistency. He LOVES eating! We LOVE feeding him! Thank you MAWMAW for coming up with a way to ENJOY feeding this angel! For all the new moms out there BUY ONE OF THESE! It is great for a Healthy baby to enjoy rice bottles or baby food without have bowl and mess!
Thank you MAWMAW! I am so glad to ENJOY eating! Your AWESOME!
Hayden has been doing speech, occupational, and physically therapy for the past three months. He loves the therapist. I believe the BC, JV, and Melissa love him too! We are currently placing therapy on hold. We feel that he is wearing down from seizures. Once we get the seizures under control, we will continue! No worries though, we are still practicing at home!  


Working HARD!

We stay REALLY busy! I often get confused on times, amounts, dosages etc! We are constantly swapping and changing medications! Also, all the medicines are why we have to get blood drawn often. We have to check his levels. A special thank you to our pharmacist David Brown for keeping up with all of this for us! We spend a lot of time in the pharmacy! (We highly recommend him!) Have a blessed day! We are off to decide which outfit to wear in our pictures tomorrow J

Please continue to pray for a LITTLE BIT OF HEAVEN ON EARTH FOR HAYDEN! A seizure free day feels impossible! We believe that we will prove the impossible wrong!

Tuesday, January 24, 2012

A SPECIAL THANK YOU (Will sum everything up and get our blog up to date)

I must say I am overwhelmed at all of the love that Brent and I have received! Sometimes people can just totally shock you with their kindness. Brent and I have received numerous calls, text messages, emails, etc. I can honestly say that the uplifting words of others are the main thing that keeps us going. I can say that we have some awesome friends. Often in public, I feel like I get the “I feel sorry for you” stares. It’s a terrible feeling. Often I try to forget the names of the people that have just “pretended like nothing is wrong”   Things are not normal and never will be normal. We have to continue walking forward, face reality, and keep on loving our earth angel.  We have received letters from churches, strangers, high school friends and many more. Deer Creek recently did a “penny wars” for Hayden and another ill child. They raised a thousand dollars for each child in one week. We were welcomed home with posters from a family that we dearly love. We have been given flowers, plants, balloons, cards, snack baskets and many more things by people we hardly know. We have had numerous visitors. We have had two “strangers” become friends as they have offered to take free photos of Hayden so that we can have these memories for the rest of our lifetime. One took pictures of my entire family a few months back. The other will be taking pictures Friday of just Hayden. I will be sure to post.  We have had preachers come to Batson to pray with Hayden. We have had many meals provided by our friends. Hayden has been asked to be a part of Batson’s miracle children and radiothon next month. During my weakest moment, I’ve had a mother message me that just lost her son to seizures. She seemed so strong and at peace. She helped me gain strength again. All of these things are overwhelming experiences that have kept us going.

I have been told that one day I will know the reason for this heartache. I feel that we are already a better person because of this heartache. All I want to do is GIVE TO THE CHILDREN IN NEED! Did you realize that children actually live in the hospitals? Children call a hospital their home. How depressing is this! We often take life for granted. We complain about the simple things in life. We stress about things that do not matter. For Hayden’s six month birthday, we decided to celebrate his life! Did he need gifts? Absolutely not! He is already spoiled and blessed. It is time to give back to others that are in need. Hayden’s entire support group gathered to celebrate and wrap gifts for three angel families and the third floor of our states ONLY children hospital! The children need activities and toys when they are stuck in the depressing hospital! If your child had to go to Blair Batson, would you want them to bring toys into the room for him/her to play with? We felt so good to give back to these children. We will definitely continue giving to our hospital. After all we are blessed to have the opportunity to give to others so we should all take advantage of it! My next goal is to start collecting movies, books, etc. for the four children that actually call Batson their home. They are paralyzed for the neck down. One of the saddest things I’ve heard in a while. I am sure they love watching movies and doing things to keep their mind off of all of their sadness. If you would like to give to Batson, please message me! I can put you in contact with Amanda Alliston. I promise you it will make your heart feel great!
·         Life is a gift; a gift from God. When you complain, you are essentially slapping God in the face. You may not see that what you say is being that big of a deal. But it is. Everyone has something to be grateful for in life. SOMETHING. Whether it be the sun shining today after the storm, or simply the gift of health.

Instead of choosing to let negativity take a foothold on your life, catch yourself and ask yourself, "What do I have to be thankful for today?" Life is harsh, cold, cruel, confusing, painful; all of the above. But it can also be much more.

Next time you want to complain, why don't you read this. You will quickly learn the true meaning of being positive, the true meaning of being faithful, the true meaning of being a Christian.
If you have any friends or family that are going through a hard time do not turn you back on them just because you don’t know what to say. I can promise you it means more than you could ever imagine. Remember you could be in their shoes of needing support yourself one day.

 Thank you to my friends and family who are walking side by side in this terrible journey! With you all things are possible, without you nothing would be possible!
Thank you Deer Creek Student Body! For a small school, yall sure come together in a time of need!
 Thank you to the many friends and family members that have sent balloons and other items to lift our spirits when Hayden has been fighting his fight!
 Thank you to "Haydens Support Group" for helping us gather toys to donate to Batson for Christmas! The cars have already been "stolen" ( Two little boys have parked them in their room) How sweet is that???
 Thank you Ashley Frazier! Your cakes are always unique and wonderful!
 Thank you to everyone for helping celebrate Haydens wonderful six months of life! It was great!
 Thank you to "Aunt Whitney" Hayden loves you so much! You keep him styling in cute clothes!
 Thank you to everyone who supports Batson. These types of suprises really brighten our day! Go BULLDOGS!
 Thank you to our second family for my first riffle! I cant wait to shoot it "AUNT LISA" Chloe and Amo have it right--- OUR LITTLE WARRIOR!

"Uncle Todd" would defintely be the one to give Hayden his first cowbell! Thank yall for all your visits to Batson and our home! We love yall!

 Thank you Aunt Kelli and Uncle C--- yall were there when I got my first EEG and you have been there everyday since! We love yall!
 A great way to spend 35 dollars and donate it to Hayden's hospital! We love our doctors and friends at Batson!
 Thank you Mrs. Cindy for taking amazing pictures that we will treasure for a lifetime! We are so blessed to have met such an awesome photographer who prayers daily for our angel! Thank you to our parents and grandparents for being our backbone!
 Brent and I are blessed beyond measures! Thank you lord for this angel!
 Thank you to our family for all the support! Hayden loves his cousin "chi chi"
 I had to add a picture with my two favorite girls! Thank you Josh and Lisa for loving Hayden like your own and allowing us the opportunity to love your girls like our own.
 Thank you to Mrs. Dana and the fam! Man oh Man you are awesome! You always know how to brighten our day whether its posters, cards, or messages! You are amazing! Simply amazing!
 Thank you to our parents for loving Hayden unconditionally, for the many days off work, the many visits and the list continues.
Thank you "Miss Holly" for coming to see me every weekend! You always bring me the best surprises!
For the MANNYYY people I left out--- Yall are all awesome! Brent and I would not be able to get out of the bed each day if it was not for such an awesome support group! We are so blessed to have such awesome family and friends!

Monday, January 23, 2012

OUR RECENT TRIP TO BATSON


Have you ever heard the saying, “CHERISH EACH MOMENT LIKE IT IS YOUR LAST?” Last Sunday, reminded me of why we must continue to stay strong for Hayden. We must overcome our fears and keep living a great life. I was so excited about having our family up for Brent’s birthday dinner. Hayden could sing, “Happy Birthday Daddy.” As I sat him in his chair, I walked to the kitchen to place the lasagna in the oven. I heard Hayden “hiccup” also known as the start of a seizure. I immediately stopped what I was doing to check on him. This “seizure” was different than every seizure in the past. He was unresponsive. I immediately picked up my phone to call Brent. I am pretty sure all I could do was scream help, grab my shoes, and meet him in the drive way. As we rushed to Greenville, I realized something was seriously wrong. Hayden would not respond to us. He was completely limp. Brent asked me if I had the Diastat (used as an emergency drug to stop the seizures). My answer was NO. I was in such a panic leaving the house that I had not grabbed anything but Hayden and shoes. After getting to DRMC, they placed him on oxygen and immediately started sticking him. All I could do was sit down to cry and pray. How could this happen to our angel? I was so angry because none of this is fair. After what seemed like 25 plus seizures, they gave Hayden something to stop the seizures (Ativan). Ativan should stop the seizures around 30 seconds after being administered. Hayden’s seizure did not stop for approximately 30 minutes later. At this point, we were being loaded into an ambulance to head to Blair Batson. Brent would follow in the car behind us. We hit a deer on the way to Jackson. How many people have the luck that we do? On the bright side, it did add a little humor to all of the heartache.

I must say that our doctors are awesome. How many doctors do you know that would wait until their patient got to the emergency room at one in the morning? Well Dr. Davis was leaving the hospital that night. He glanced at the board to see an ASLD patient from Greenville was on the way. He was so kind to stick around. He informed us that Hayden had not had 25 seizures more like one seizure that lasted 3 hours. He would check us in for observations and release us the next morning.

The next morning the nurse took Hayden’s temperature. Hayden’s temperature was 102.2. They became alarmed. They took over 45 minutes to draw blood. The seizure medicines cause blood drawing to be extremely challenging. We waited for a variety of test to come back. They summed up his problem as a viral infection. After 48 hours of rocephin, we were going home.

 Hayden is my everything! I am so in love with this precious angel. The only thing that would make this picture better is if we were playing instead of being lazy in the hospital bed.
 He truely loves looking into his Nana's soul. He is telling her to stay strong!
 When you spend four days in the hospital, you must find a little bit of entertainment. Hayden did not appreciate it.
 Mommy requested a big bed. It was perfect for bonding time. Hayden and Daddy enjoyed a movie on the IPAD followed by a nap.
This picture should make everyone want to donate to the childrens hospital! Everytime we have stayed a visitor has been there! Thank you "CAPTAIN CATFISH" for turning our frowns into smiles!


WE NEED YOUR PRAYERS MORE THAN EVER! This has by far been the most difficult week of our life. The seizures are in FULL FORCE. The medicine has him wide awake and crying, crying, and crying a little more. I am sure his body is very sore and exhausted. A seizure is like running a marathon. Hayden is having 10- 20 seizures a day. He should be exhausted. Instead of sleeping, he is staying wide awake. Please pray that he can find rest and peace. Lack of sleep is causing him to have more seizures also. We are trying Motrin and Tylenol to help with his soreness. He is our earth angel. He is a sweet angel that does not deserve all this pain. We are all mentally and physically exhausted. It hurts to see your child in pain. Each day I am losing strength. We will continue to lean on our faith to help us stay strong for Hayden Brent.

“I will cover you with my hands and protect you.” Isaiah 51:16b
Fear and worry are never necessary when you walk beside our Heavenly Father. He has promised to cover you, to protect you from harm. He will not leave you comfortless, and He will always come to you with words of hope and mercy. When you are hurt, His goal is not to break you, but to teach you and draw you close to Him in times of heartache and extreme pressure.

HAYDEN'S STRUGGLES

 

Brief Summary:
Hayden Brent Casavechia was born June 1, 2011. After a perfect pregnancy, our miracle child was finally here! We had a few scares at birth that were quickly resolved. We headed home from the hospital four days later as a happy family of three! He had the “hiccups” from birth and struggled to take a bottle. He would rather eat out of his medicine feeder. At four weeks old, we took him on his first beach trip. His “hiccups” were getting more severe. At six weeks old, we headed to Jackson, Mississippi to visit the emergency room at Blair E. Batson’s children hospital for seizures. Hayden went through a variety of test from video surveillance EEG, EMG, EKG, MRI, spinal taps, urine samples and the list continues. On July 20th, our life changed forever. The perfect life that we lived was now completely crushed. Hayden had bilateral white matter damage. We now had to wait two months to determine which Leukodystrophy would be diagnosed with. Even though his prognosis was poor, we would not give up on our miracle. We spent the next two months taking pictures, swimming, going back to the beach, and just having fun like a normal family should.

September 14, 2011:
We headed to Blair Batson to receive our diagnosis. As we waited in the room, we knew that his diagnosis was going to be poor. I thought I was “prepared” but little did I know I was severely “unprepared.” As our genetic counselor entered the room, she begins explaining Hayden’s diagnosis. She informed us that he would never walk, talk, or live past childhood. At this moment, I heard NOTHING else. My life was what seemed to be OVER! Laura did say one thing that I will never forget, “ Hayden will set his on goals in life". Once I finally calmed down, I asked where do we need to go? Which  hospital specializes in ASLD? Our answer was even more crushing. We are the third case in the USA. There is not a Doctor that specializes in it. There is NO cure. There is no medicine to stop it. The white matter will continue to break down.  Everyone knows that Brent and I are both "hard headed" and I feel that the worst part of all of this is not being able to fight for what you love. Atleast cancer and heart failures have a cure rate and a CHANCE. We are being given ZERO CHANCE.
 
As we lean on God, we are reminded that seizures do not occur in Heaven. So please pray that we can feel a little touch of Heaven here on Earth!

A Battle of Seizures and Medicines:
As he grows, we will continue to swap his medicines. We finally had eight weeks seizure free. Our life seemed like it was back to normal. How can we possibly have another seizure after eight weeks seizure free? Life seemed back to “normal.” On Thanksgiving, they came back in FULL force. We have made two trips to the emergency room, had hundreds of seizures, and spent hours researching. We are taking four different seizure medicines and have zero luck. I will never lose faith that one day we will have a seizure free day again. I am praying for a little bit of heaven to come down to EARTH and miraculously give us another seizure free day.

A RARE DIAGNOSIS (ADENYLOSUCCINATE LYASE DEFICIENCY)

What is Adenylosuccinate lyase deficiency?

Hayden was diangosed with ASLD at three months old. Many people have never heard of adenylosuccinate lyase deficiency. The deficiency is responsible for a range of symptoms that involve psychomotor retardation, often accompanied by epileptic seizures, and autistic features. Most patients suffer from moderate to severe retardation, while rare patients display only mild psychomotor retardation. Two common theories were proposed to account for these effects. The first is that they result from decreased concentrations of purine nucleotides needed for purine biosynthesis. Decreased concentrations, however, could not be found in various tissues taken from ASL-deficient patients, probably because purines are furnished via the purine salvage pathway and some residual activity of ASL. The second is the buildup of accumulating succinylpurines causes neurotoxic effects. In the severely affected patients, the concentration levels of SAICA riboside and S-Ado are comparable, whereas in patients with milder forms of the disease, the ratio of S-Ado is more than double that of those more severely affected, while SAICA riboside concentration levels remain comparable. This suggests SAICA riboside is the major contributor, while S-Ado may protect against SAICA riboside’s toxic effects.

As of 2004, about 60 patients had been diagnosed with ASL deficiency, but many more are thought to be undiagnosed, due to the heterogeneity of the disease and a paucity of general screening. Patients have been diagnosed from a number of areas around the world, although a large number of them are from the Low Countries. ASL deficiency rose to prominence in the well documented case of Michael Dignan, a developmentally challenged youth. There is yet no cure for this deficiency.

For more information search the following: http://en.wikipedia.org/wiki/Adenylosuccinate_lyase_deficiency