Wednesday, November 30, 2011

Find a place inside where there's Joy, and the Joy will burn out the pain...

Two blogs in one day Im on a roll but this blog is more of an update on Adam.
2 weeks ago we Adam had his three month check up with Nuerology and of course had everyone smile and laughing because now mama has to tell all his jokes (sometimes its very embarrassing). Dr. Lotze really wants me to go get my blood work done because they seen something in Adams bloodwork that they havent seen before so they need my blood to study it also. Adam also got his G-Button which is alot easier and now he is able to take a bath!! Woohoo!! We went to the opthamologist also and she did confirm that Adam is blind. His eyes are good she said when you are blind the nerves in your eyes turn white Adams still has color but theyre pale as she looked deeper inside the damage was more intense. So basically his eyes are good its the part of the brain that controls that eyesight is already being affected with the ALD. There for a while I was very scared Adam lost a lot of abilities and a quick rate....but now I can say we have been steady and he is comfortable now. Even though he cant walk speak or see we have our special communication. We love on him, sing to him, play with him, scare him when he wants to play because his hearing has gotten so good he knows when your trying to sneek up on him! I love him Rollo loves him Alayna loves him Oriana loves him and Zoie loves and not to mention the other hundreds if not thousands that love him and lives Adam has touched. With the holidays I have found myself more emotional but Im hoping to a big blowout Christmas for my kids! Through all of it all I know my blessings and through out the day I have to look a little harder.
Love you all and God Bless!

Years One and Two!!

Sorry it has been way to long but here I go I left off with Adam turning one. Adam spent alot of time at his Mimi's while I worked he was a good kid never did we have to get onto him. He loved fruits and vegetables and hardly ate any sweets. Adam and his grandma planted Adam a tomato plant and Adam would always run out there to pick him a "mato". When Adam was about a year and half we went to see my mom in El Paso and rode on an airplane. Adam was so excited but once we got on the plane he was disappointed he didn't believe we were on a plane. While we were in El Paso Adam discovered Shrek and I could not get him to stop watching it lol....it was everything Shrek! So luckily on Adams 2nd birthday Shrek 2 party theme was out and that was the party! After Adams birthday I took him to see Shrek 2 and he was terrified i mean terrified because of the giant gingerbread man! I was hilarious but at the same time i was like my poor baby somebody bought him the movie and I remember the look on his face when he saw the cover he ran and threw it in the trash.
Here is my most favorite memory of all Adam loved foam like the kind from couches or the egg crates you put on mattress. He would walk around with it in one of his hands clinched tight and he would go on playing his normal routine never dropping it or letting it go. He would fall asleep with it in his hand and finally let it go then I would be able to throw it away...and guess what he did he did first thing he did in the morning, looked all over the blankets for it then when he couldnt find it he would get up and go get more somehow somewhere! I would find it in his ears in his nose so if I seen him and one of his hands werent closed I would chech his ears or nose and sure enough thats were it would be. I would even find it in is diaper sometimes. Oh and these pieces werent that big small smaller than the palm of his hand. Hope you enjoyed some memories of years 1 and 2!!
LOVE AND GOD BLESS!!

Tuesday, November 1, 2011

The Beginning.......

So many things have changed and let me just say that I hate 2011 and hate October 2011 even more! This has been a horrible month and Adam has been hospitalized twice. In this month Adam has gotten his feeding tube, has lost the ability to talk and his vision is even gone. We rely on us asking him questions and him squeezing our finger and even with that his ability to squeeze is getting minimal. He gets muscle spasms more frequently and has anxiety really bad now.
Many of you may know Adam and some may not...some may have knew him before his diagnoses and some of you may have not. I'm going to start from the beginning and from the first day I found out i was pregnant.
Here it goes hope you enjoy:
The day I found out I was pregnant with Adam was Sept. 25, 2001. As gross as this sounds I still have the home pregnancy test that I took :/ lol. I was young I was 18 and I was scared, excited and all the other emotions you feel when you first find out your pregnant. I had a very good pregnancy with Adam. My favorite food to eat was peanut butter and strawberry jelly with fritos in the middle...the grossest thing that I craved was dill pickle with snickers....YUCK! My due date was May 20,2002. I had a great pregnancy with Adam no morning sickness....he was always in my ribs though and always had the hiccups even after I had him he had the hiccups.
May 16th my water breaks and luckily I'm in the shower which was a good thing considering we were just at the mall. I felt really sick like I was getting the flu. It was about 5:15 when my water broke made it to Kingwood hospital around 6:30. I wasn't in any pain when I first got to the hospital but as the hours went on I started to feel the contractions. I got my epidural finally and on May 17th 2002 at 12:52 am I had a beautiful healthy 7 lb 8 oz 19 inches long baby boy ADAM NATHANIEL HUNTER at that very moment my life changed forever and I was the happiest mama in the world! He was so white I kept thinking I had an albino baby lol jk...Adam was such a good baby he hardly ever cried and I mean hardly ever. I remember one day he kept crying and crying and anything that I did would not help. I took him to the ER and it was only GAS can you believe it was only GAS. At that moment I was relieved but didn't know at that time Adam would always have gas and anybody that knows him knows that would become his SUPER POWER! He was my chunky monkey and his first year of life flew by so quickly. His first birthday was Winnie the Pooh and we had a big blowout. He began walking 2 days after 1st birthday. I was and am one blessed person to be this lil boys mama! I hope you enjoyed the 1st year of his life and stay tuned for the rest of his life story! Love you all and God Bless!

Wednesday, September 21, 2011

Cause what if your blessings come through raindrops..what if your healing comes through tears...

What if a thousand sleepless nights are what it takes to know You're near what if trials of this life are Your mercies in disguise!
I'm like whoa I know I haven't updated Adams blog in quite sometime and I'm sorry things have really been well very busy!
First and foremost I give thanks to our Mighty God for everyday blessings!
As of today Adam is completely in a wheelchair and cant walk at all without assistance. I have to carry him to and from the car because our house is not handicap accessible and that is why we are MOVING and Adam is very excited! We also have compassionate care hospice now and honestly when the doctors recommended hospice I was like ummm NO!! I personally did not make the call for the fear of the word HOSPICE....that word scared me more than anyone could imagine! The social worker from the hospital actually made the call and had them contact me. With compassionate care Adam gets the extra benefits of having a nurse and a social worker that comes to our home. They will be a bridge between me and the doctors and save us trips to the hospital if needed. They have only been in our life for a week and have really been a blessing!
Today we went and had a swallow study done on Adam and he did relatively good and there was no food or liquids getting into his airway. PTL! He did have some pooling in his throat that could possibly get into his airway but as of right now its nothing to worry about. Adam cant have certain foods and they recommended that we not give Adam meats,popcorn,nuts etc. that require a lot of chewing he does not have the ability to chew and grind his food like we do and that is a choking hazard. We will be waiting to hear from Dr. Lotze to see what he thinks and to find out when we will be getting a g-tube. I'm going to have to work on finding some foods that will be easy for Adam to chew and swallow. He can no longer drink from a cup or a straw and he drinks from a sippy cup without the flow guard as of right now he is doing ok with that.
Adam's speech has changed drastically and its getting very hard for him to speak and it often frustrates him. It breaks my heart to see my baby go through this. Some days are better than others.
Enough with all of the above Adam is doing very well in school and is enjoying going everyday! I'm so grateful for the teachers and nurse and Newport Elementary!
He still has that amazing sense of humor and is always laughing.
Last Tuesday Adam had a King Of The Day pool party that Kailyn and 4 other girls swam and made sure he had a special evening after school. He enjoyed it very much. He also got to go on his first "date" with his girlfriend Kailyn and we all went out to eat at his favorite restaurant Charming Cafe!
With everything going on I'm so thankful for the family and friends that we have and that we have made. Adam has touch so many lives and he is such a joy in my life as well as everyone else. Thank you all for the prayers, thoughts and support!
God Bless!

Wednesday, August 24, 2011

Physical Therapy Update

Today we went to Adams physical therapy and it went good for the most part. At first they wanted to put him in a walker and when they got it out and put him in it i started crying. This was not your normal walker this thing was huge and it had a belt looking thing that went around his waist and a thing that went in between his legs. To top it off it had straps on his ankles and it  looked like some kind of contraption.... I was like NO I will not have my son in that thing!! So then we started talking about the wheelchair and since its custom made it takes up to 3 months I was like are you kidding me 3 MONTHS!! So since it takes so long they will get him a loaner wheelchair and we should have it no later than Monday. They recommend home therapy since they are so far away from us...we will see how that goes since it is hard getting home therapy. They are also getting Adam a bath chair, a toilet chair that will be easier for me and Adam both.
The school has been very supportive and Adams teacher even called to see how he was doing, He has 3 teachers Mr.Hamm, Mrs.Rennalls and Mrs.Brenneman. He has a lot of friends in his class and for now the nurse has a wheelchair in his class for when they go to electives, lunch or recess. He loves it they were calling it his throne and calling Adam your highness!! LOL  I love this little boy so much!! Like I said before his walking has gotten worse and needs help walking...he has trouble sleeping and I'm waiting for the doctor to tell me how much Melatonin to start Adam out on...his speech has changed also and is now soft spoken...his left leg and left arm are not as responsive as his right arm and leg. last night as i was changing him i could not bend his leg and finally when i was able to he said that it hurt. I HATE SEEING MY SON LIKE THIS!! I'm also waiting to hear back from Dr.Lotze and the social worker to see about getting an appointment to discuss the future This is something that i dread doing but I know that it needs to be done sooner than later, Well this is all I can handle for one night as I can't stop crying and can barely see the keyboard. Thank you and God Bless!!
Praises:
1.) Adam and Alayna had a great first day of school!
2.) Adam is perfectly fine with having a wheelchair and loves the attention that comes along with it.
3.) The school is doing all they can to make Adam as comfortable as possible and going to extreme measures to to help him any way they can.

Prayers Requests:
1.) Please continue praying for complete healing in Adams body.
2.) Pray for comfort and that he will start getting some restful sleep.
3.) That God will provide the right house for us that will make things easier for Adam and myself.
4.) Pray for strength, faith, love, wisdom and peace.
“Be JOYFUL in HOPE, PATIENT in affliction, FAITHFUL in PRAYER”~Romans 12:12

Sunday, August 21, 2011

One day at a time.....

As I put the kids into bed tonight I realize tomorrow is going to be a hard day for me. Adam will be in the 4th grade and Alayna will be in 1st grade. I feel like I did when Adam had his first day of kindergarten, I'm scared and worried about he is going to do. Both Adam and Alayna are excited to go back to school but this mama isn't. We had a good last weekend of summer vacation. Friday we went to lunch with LeeAnn at Johnny Carino's and Adam ate a big piece of lasagna. Then we went to the fire station where the kids got a tour and they even got to ride in the firetruck and spray the hose. It was a neat experience for all of us. We then went and got ice cream. Saturday we didn't do much until the evening we went to church for our fellowship and the kids went to childcare they played, ate pizza and watched a movie. Yesterday and today Adam has been exhausted and not himself. It breaks my heart to see him this way because I know thats not my son. We went to church tonight and Adam played dodgeball in the gym, him and Josh won!! As we got home tonight he was really tired he wanted a bath and wanted to go to bed.
I think nevermind I know this will be the hardest thing I will ever have to do. Like I said we are taking this one day at a time and living everyday happy. I thank the Lord everyday for my children and for Rollo. I lose count on how many times Adam says "I love you" to me, Rollo and Alayna! Adam knows that he is loved so much and that there is nothing that me and Rollo wont do for him. I wish that Wednesday would hurry up and get here so that way Adam can get his wheelchair and I will be more at ease with him going to school. As tomorrow comes I pray for all the children, parents and teachers as the kids head to their first day back to school! I will update the blog hopefully every night if not every other night. Thank you all and God Bless!!

Tuesday, August 16, 2011

Summer coming to an end.....

Wow I cant believe another summer is almost gone as I look back at our summer I'm really happy at all the memories and time we spent getting to do things. The way the doctors were talking is that by the end of the summer it wouldn't have been good. But here we are and although we have seen changes in Adam he has proven the doctors wrong. In June that's why we had the chance for Disneyworld and the doctors made it a rush wish we absolutely had an amazing time that we will remember forever! July we went with LeeAnn to her parents lake house and we also had a blast the kids rode jet skies, the boat and went swimming. They had a blast participating in the 4th of July parade. We also went to the beach house and stayed there for a couple of days! At the end of July the VFW held a benefit for Adam and I would like to thank them. Now I can focus on my family and not have to worry about what we need and how we are gonna get it!
Adam started occupational therapy yesterday but I don't think it will be very beneficial to him but we will see. Adam starts physical therapy on the 24th and the way the OT therapist was talking is that a wheelchair will be a lot safer for Adam. We will see what PT says.
I know many of you are wondering how Adam is doing....things have really changed and here it goes....first and foremost hes walking is the major thing that has changed. He walks but with assistance and that is why we are hoping for a walker or wheelchair. I now have to help him go to the bathroom, bathe, dress, sometimes feed him and watch him closely when he eats for the fear that he is gonna choke. He has had problems a couple of times with not being able to swallow. I noticed in the last week that his left leg and arm are not as strong as his right arm and his left leg is stiff a lot. The past couple of days he has started drooling without knowing.He also gets frustrated sometimes and gets emotional. On the other hand he is still smart as ever and remembers things from along time ago. He is still the same Adam and still very talkative and always tells me he loves me! He still loves to play with his friends and swim at Mrs. Rachels house! He is still able to play with his Star Wars guys his Legos not so much since they are small.
Thank you all for standing behind us during this difficult time and continuing to be with us on this horrific journey. We love you all and God Bless!

Thursday, July 28, 2011

Be A Hero, Become A Donor

As many of you know, in April of this year, our son was diagnosed with a horrific disease called Adrenoleukodystrophy.  Without bone marrow transplant, or God's intervention, this diagnosis is terminal.  Our family is committed to raising awareness not only to our son's disease, but to also motivate our community to join the marrow registry.  While Bone Marrow Transplant is not an option for our son, we do know that over 70% of all patients in need of a life saving bone marrow transplant worldwide will need a stranger to give them life.  That stranger could be you or me.  But you can't "Be a Hero" without joining the registry and we will give you that opportunity at Adam's Benefit on Saturday, July 30 from 10 am - 6 pm at the VFW Post 10352 located at 16035 Waverly Drive in Houston or online with us at www.GetSwabbed.org and click on "Be A Hero Become A Donor" in the pull down menu.

It is important to make sure you are a committed potential donor before you make the decision to swab your cheek, so please check out the Eligibility Guidelines at http://www.dkmsamericas.org/bone-marrow-donors/become-marrow-donor/eligibility   first to see if you meet the health   and weight guidelines, as well as being comfortable with the methods of donation.  You can also find information at http://bahbad.org/home/
Realize that the odds of matching a patient in need are slim, but imagine getting the call someday that you match a 5 year old boy or 40 year old mother of similar heritage to you.  Most people don't realize that you match a patient based on race and ethnicity, so the more people on the registry of different tissue types (heritages), the more matches we will have, hence the more lives saved.

Help us save lives in honor of Adam and be part of his legacy of giving HOPE to patients in need worldwide by joining the "DKMS Marrow Registry" today.  And tell a friend.

Please make sure you understand you are not joining the registry to save Adam.  He is not a candiate for a BMT.  When you sign up for the DKMS registry, you potentially can match a patient globally and unless you are prepared to say YES to saving them, we DO NOT want you to register.  Adam is the catalyst for this lifesaving endeavor!

Recycle Your Body Today....
Be A Hero, Become a Donor

Friday, July 15, 2011

I can do all things....

Through CHRIST who strengthens me!
Last last couple of weeks have been hard, emotionally and phyiscally. Everyday I have to force myself not to look ahead in the future but live for today and get as much out of Adam and Alayna as I can. I love my kids with everything that I have and there's nothing that I wouldnt do for them. I keep thinking why my son and why does it have to be that I can not do anything. Its killing me inside and Im screaming from the inside. (I started writing this last night and gave up because my emotions started stirring)
Each morning I read from a 365 Devotional and this is exactly I needed to read this morning:
DO NOT WORRY ABOUT TOMORROW! This is not a suggestion, but a command. I divided time into days and nights, so that you would have manageable portions of life to handle. My Grace is sufficient to you, but its sufficiency is for only one day at a time. When you worry about the future, you heap day upon day of troubles onto your flimsy frame. You stagger under the heavy load, which I never intended you to carry.
Throw off this oppressive burden with one quick thrust of trust. Anxious thoughts mender about and crisscross in your brain, but trusting ME brings you directly into My Presence. As you thus affirm your faith, shackles of worry fall off instantly. Enjoy My Presence countinually by trusting me at all times.
Therefore don't worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.- Matthew 6:34
But He said to me, My grace is sufficient for you, for power is perfected in weakness.-2 Corinthians 12:9
Trust in Him at all times, you people; pour our hearts before Him. God is our refuge.- Psalm 62:8
Ok I am just going to leave it at that I WILL have a great day and weekend. God bless you!
PS Adam and Alayna are doing great....they are doing their job fighting and driving this Mama crazy but I wouldn't change it for anything in this world! They are very excited about VBS next week!

Monday, June 27, 2011

Tides and Waves

"The tides of life are predictable, the waves of life are uncertain.  I am thankful I know The One who controls the tides and commands the waves." ~Robin Butler

The last several months have been a series of waves...... last night, the "wave" threatened to pull under.  Thankfully, at God's command, the storm was calmed.

Yesterday, Adam had a difficult day.  He was disoriented at times and struggled more than usual.  By evening, Adam was running fever and he fell and hit his head.  He became more disoriented and had difficulty responding.  A call to the nuerologist led to an emergency trip to Texas Children's Hospital.  Due to the ALD, Adam's body does not respond to the trauma of injuries or fever as other children would and can be in a critical situation quickly.  Through emails, texts and Facebook, several people began to pray, pleading with God for Adam to recover and continue to enjoy life as he is now. 

By the time Adam and his family arrived at the hospital, he was perking up and "Adam" was shining through.  He greeted visitors with hugs and assurances of "I am fine!  I am going to be OK!" 


When the ER Doctor entered the room, Adam asked, "Who are you?"  She responded, "I am your Doctor for the night."  To which Adam replied, "Oh, I thought you would be a man!"  His witty Doctor didn't miss a beat. She replied, "I bet you think all nurses are girls!"  He laughed and they made friends immediately. 

Thankfully, his bloodwork returned normal, neurology agreed he could go home and his Doctor returned to let him know the good news.  Adam was not happy!  He bargained, pleaded and negotiated some more...... "Please can I stay in the hospital just 6 days?  How about 4? Please?"  Before she left, she assured him, "If I could, I would admit you just so I could hang out with you!"  Adam had stolen her heart, just as he has stolen the hearts of all of us!  By the way, before leaving to go home, Adam's "Super Powers" were back in full strength.  In fact, he cleared the room more than once.  He is very proud of his accomplishments! :-)

While reflecting on the events of the evening, Danielle pointed out......so many times we walk away from situations and say "Whew! That was close!  Thankfully it turned out not to be what we thought!"  When in reality, it was what we thought, but God intervened and changed the course.  We believe God intervened.  He heard your prayers and calmed the storm.  So today, we give Him Glory!  We praise Him and thank Him for restoring Adam to his clever, witty self!

This morning, another wave hit.  Dr. Lotze returned from out of the country and called Amber.  The genetics testing was back and he confirmed Adam has the genetic form of ALD.  This means Amber will need to undergo genetic testing as well.  When Amber explained the changes Adam has experienced, and told him about the events of yesterday, Dr. Lotze explained these changes are to be expected.  He then let her know he was putting in a referral for a wheelchair and modifications to their home.  This news is difficult on so many levels and may include the need to move to a different home.

So, taking a deep breath and choosing to make the most of the day, Adam was able to enjoy a day with his family.  Rollo took the day off and they went to see Kung Fu Panda II, ate pizza and relaxed!

Praises:
1.  God answered prayers and Adam quickly recovered from his fever and fall!
2.  Adam and his family enjoyed a day together - movies, pizza.....the normal things in life!
3.  God's continued provision of air and the ability to breathe while the waves of ALD come too close together!

Prayer Requests:
1.  Healing.  Healing.  Healing.
2.  Decisions and provisions regarding a handicap ready home.
3.  Comfort, Peace and Wisdom for Adam and his family.

Monday, June 20, 2011

It's the small things.....

It's the small things that matter most!! Have I mentioned how much I love my family....I have the best kids and the worlds greatest husband he works so hard so that me and our kids can have things! I also have the greatest friends that anyone could ask for. We had an awesome weekend Saturday Rollo got us a new vehicle we traded in the Equinox and got an Acadia then we joined Amber and James at Rhonda and Keith's house for a yummy fish fry! The kids played for hours in the water. Sunday we went to church and Adam was baptized by Brother Robin it was AWESOME! At the very moment I was the happiest mother on earth! We then meet up with LeeAnn and her crew at Straight off the Road for some good BBQ! That was a yummy lunch!! Here we are and its Monday we didn't do much we cleaned up the house and I took the kids to go swimming at Ms.Rachel's house they had a blast! They enjoyed it very much! Well that is all for now I hope everyone has a blessed night and a blessed day tomorrow!
For all of my followers who doesn't know Christian if you have time please go read another blog its a little boy who we hold close to our heart.....his blog is Pray for Christian Daniel! I need to get the word out about him the power of prayer is awesome!
Love you all and God Bless!

Wednesday, June 15, 2011

Amazing Grace

Wow it's been awhile since I have wrote on here. We are still trying to adjust to returning home from Disneyworld which by the way was AWESOME!! We made so many great memories and the kids are still talking about the rides! With the amazing imaginations they have pretending they are going onto a ride - one of their favorites was The Haunted Mansion. Adam and Oriana were not a fan of the roller coasters.  But Alayna my lil dareangel was!  She is such a brave 6 year old! We returned Thursday, June 9th and on the 10th we joined LeeAnn, David and their family for an Astros game.  After the game, we met up with the Towles family and waited for JR to come see Adam! We stayed in the parking lot until 12 am hanging with JR and the family.  Adam also talked and told jokes to Micheal Borne which I think is awesome! To see and hear Adam praying for JR that was awesome coming from my son! Adam and JR have an awesome connection and I know its all through Christ! JR and Brittany Towles are an amazing couple!
Sunday we went to church and then we went to see Rollo's youngest daughter Zoie and she ended up coming home with us! We then went to our family church picnic with our Church. Adam spent a lot of the time talking with LeeAnn, Danielle and Amanda. Yesterday LeeAnn informed me that as the women prayed for Christian (which is another sick baby from our church) Adam wanted to pray for him as well! That is amazing to see God working through this 9 year boy!
As of yesterday, my emotions were running away from me.....I had enough and told the kids let's get out of here. So we went to Bounce USA and guess what?  They were closed!! Grrrr!  So we went to Walmart for some groceries. I know, not very exciting! Came home, cooked dinner and Rollo got called out to work and I was just feeling sad! The kids and I went to LeeAnn's house and while we were there...........
At 9:15 pm my son Adam Nathaniel asked Jesus into his heart!
So through all the emotions I had felt earlier that day, at that moment everything was better! Yesterday turned out to be a GREAT DAY!!
So here is the next GREAT NEWS........
Adam will be baptized Sunday June 20th at 9:00 am at First Baptist Church of Crosby!
God Bless!!
Hope to see you there! This mommy is proud of her children!!

Monday, June 6, 2011

Give Kids the World and Disney

Adam and family are staying at the Give Kids the World resort, near Disney.  Amber says she wishes they could live there.... it is fabulous.  They are taking a break from the heat today and heading indoors until later when things cool off.  They are taking full advantage of their Fast Pass which keeps them from waiting in long lines to enjoy the rides at Disney.



Today is Amber and Rollo's wedding anniversary.  (Saturday was Amber's birthday). 


Praises:
1.  This trip to Florida was made possible by the generosity of so many.  Thankful for Make a Wish, Give Kids the World, and Friends and Family!
2.  Time together as a family making memories.
3.  God's grace is sufficient.

Prayers:
1.  This trip has been bittersweet.  Please pray for Amber to have peace and enjoy the moments. 
2.  Pray for Adam to have endurance and strength as it is very hot and there is LOTS of walking. 
3.  Pray for God's healing in Adam's body. 

Friday, June 3, 2011

Heading for Disney

This morning, around 10:30 am, Make a Wish sent a vehicle to take Adam and his family to the airport.  They loaded up and left Crosby for an adventure!




They arrived at the airport and waited "patiently".........


Flight went well. Upon arrival they were greeted by a Make a Wish representative.


Please continue to pray for them all to have a GREAT time!  We will update pictures throughout the week.  Thank you to everyone who has helped make Adam's dreams come true!

Wednesday, June 1, 2011

So Many Blessings........

I want to start off by saying THANK YOU for all the things people have blessed us with! A huge thank you to Newport Elementary for the donations and for taking care of Adam while he is at school! NES rocks and I'm so happy that he will be there next year. To all the other wonderful people that has helped us God bless you.
We are so excited about our trip to Disneyworld....the kids are worried about flying but they will be fine! We will be there for 7 days and guess what I found out the weekend that we are there they will have a Star Wars show. Adam is going to love it!!
Please continue to pray for Adam as well as Alayna and Oriana. Alayna has not been herself and I know its from all the stress and everything thats going on. Pray for Rollo and I as we go on this trip to be stress-free and not to be parents but kids ourselves! Sorry I have not updated our blog but sometimes well alot of the time I'm always having to do something! Well I promise I will update this later today! Gotta do some more packing, laundry, and cleaning! Love yall and God Bless!!!!!!!!!! 

Wednesday, May 25, 2011

Blessings

"'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?

What if trials of this life
Are Your mercies in disguise?" ~ Blessings by Laura Story


Over the past 24 hours, Amber has faced decisions no parent ever wants to face.....and she has done so with courage and strength beyond her years!  It is obvious God is guiding her and granting her the wisdom and peace she has asked Him to provide.

The opportunity to go to Minnesota and meet with Doctors about possible experimental stem cell treatment held many challenges.  One of the biggest concerns is the advance stage of Adam's disease.  With his stage of disease, the treatment itself had a high potential for causing further, rapid deterioration.
 After careful consideration, research and above all else, prayer, Amber has made the decision to choose quality of life and relationships for Adam instead of hospitals, chemo, radiation and stem cell treatment.  It is extremely important to Amber and Rollo that Adam's life be full, his memories be happy and his relationships be strong for as long as God allows him to have the capacity to enjoy life!  Make no mistake, we continue to pray for God's intervention and complete healing of Adam's body.  We will not cease to ask for that healing until the day he leaves this earthly body and receives his eternal, disease-free, glorious body in heaven.  God is able to heal Adam in Disney World, at home, or at the beach with His family.  God is not limited to healing only in the setting of chemo, radiation and hospitals.  We will continue to ask, with confidence God is able and will completely trust Him with the results.

Make a Wish has been amazing!  They are setting up Adam's trip for June 3rd, right after school ends.  James, Amber and Emma will be in Disney at the same time and the timing allows for them to enjoy company of friends at the same time!  God is good to work out that detail!!!!

In choosing a life of memories for Adam, their family will make the most of every day and opportunity - whether that is enjoying watching Adam play with Alayna in the yard, exploring the beach with his grandpa or saying his good night prayers!  Please continue to support this family with your prayers, friendship and gifts of love.  Your generosity has allowed for great memory makers already!  We look forward to seeing what God does through this community of church, friends and family in the days to come.

Praises:
1.  God answered prayer in a very real, specific way.  He gave Amber wisdom and ability to make the tough decisions.  He has given her peace and a lightness of spirit as she is confident in this decision.
2.  God has blessed Amber with Rollo.  He has been her support and loves her, encourages her and gives her courage to do what she believes is right.
3.  Make a Wish has quickly provided an amazing trip to Disney and God worked out the timing where they will be able to share some of the experience with friends.

Prayers:
1.  Please pray for continued peace for Adam's family as they seek to make the most of every day. 
2.  Pray for God to continue to provide for every need - emotional, physical, financial and spiritual.
3.  Pray for Alayna and Oriana as they navigate the unfamiliar territory they have been place in at this time.  Ask God to give them a sense of security and love.
4.  Pray for God to grant Amber wisdom with every decision she faces, and the courage to do whatever God leads her to do.

Ways you can help:
1.  Pray.  Never stop believing God can heal and He still performs miracles.  Ask God for complete healing of Adam.
2.  If you have connections to provide Adam and his family with opportunities to make memories, please consider doing so.  He absolutely loved meeting the Astros (especially the locker room!), his birthday was a BLAST, the King Ranch Truck was cool, cool, cool! All of these things were made possible because of people who knew people who had a heart to help.  If you know someone who might be able to provide vacation opportunities or experiences here in town, please contact Amber directly or you may contact Lee Ann to do so anonymously. 
3.  Gift cards are still helpful.  Amber has quit her job in order to spend this time with Adam.  Rollo will be taking off work as he is able.  He will be going to Disney and there will be other times he will want to be with the family.  Visa gift cards can be used to pay utilities, gasoline, groceries or for a vacation.  You may also make donations at Community Bank in Crosby by seeing Josh Seale. 

Here is a link to an amazing song of the beauty of the blessings found through trials.
Blessings by Laura Story

Tuesday, May 24, 2011

Minnesota and Disney on the Horizon

* If you are reading this blog, please be sure and read the update on the entry "Blessings" from May 25th *

Today, while Adam was at his Endocrinology appointment, Dr. Krantz and Dr. Lotze were meeting and conferring with a team of Doctors in Minnesota.  At the end of the endocrinology appointment (where Adam checked out well!) Mrs. Dianne (Social Worker) and Dr. Lotze's nursing coordinator notified Amber a decision had been made....   Dr. Paul Orchard has agreed to see Adam at Amplatz Children's Hospital in Minnesota and evaluate him for a possible stem cell treatment being offered to some children with advanced ADL. Plans are for him to be in Minnesota next week. Chris Brown Charity provided Southwest Airline tickets for Adam, Amber and Rollo to make travel possible.  They will be in Minnesota for 2 - 3 days where Adam will undergo extensive testing and evaluations.  This is an amazing opportunity with multiple challenges and concerns.

Dr. Lotze's office contacted Make A Wish and arrangements are in place for him to take his Disney trip either before or immediately following his trip to Minnesota.  This will be an awesome memory making trip for the entire family! 

There is no time to conduct a fundraiser, so we are asking people to consider how you might be able to help.  Below is a list of specific needs.  We are asking financial contributions be made in the form of Visa Gift Cards where possible.  The Pay Pal option is still available as well.

Financial Needs:  Please coordinate your donations with Lee Ann Lee if possible. 
Contacts: Cell: 832-573-1862 or email: leelee@fbccrosby.org or at FBC Crosby church office 281-328-2564.

1. Taxes on the airline tickets (approximately $90 per ticket x 3)
2. Meals. ($5 - $10 per person per meal depending on what is available.  3 meals per day for three people for 3 to 4 days. Consider sponsoring a meal or a day of meals)
3.  Rollo will be missing approximately 2 weeks of work between the trip to Minnesota and Disney.  Contributions above need for trip may be used to help offset his loss of income over this period of time.
4.  Transportation - taxi or rental car while in Minnesota.  Will need transportation to and from hospital and lodging. (varies)
5.  Lodging.  Hoping for a Ronald MacDonald House room to be available.  Will not know until later this week if this will be available and if so, at what expense.

* If the trip to Minnesota falls through for any reason, donations will be used for future needs.

Prayer Needs

1.  Pray for HOPE.  Pray for viable options to bring healing to Adam.  Pray for God's Divine intervention in the evaluation process.  Ask God to leave no doubt of His presence.
2.  Pray for wisdom in the decisions Amber and Rollo will have to make regarding potential treatments.  These options are not without risk and do not offer guarantees of positive outcome.  Pray for peace and certainty in the decisions they make.
3.  Pray for Alayna and Oriana.  In different ways, they are both under stress at this time.  Ask God to assure both of them of the love of their parents and give them peace.
4.  Pray for God to provide financially, emotionally and spiritually for every single need in the days ahead.
5.  Pray for Dr. Orchard who will be evaluating Adam.  Ask God to give him wisdom about Adam's case.
6.  Pray for Adam's entire family as they love him so very much.  Ask God to give them peace and hope.  Ask God to increase their faith and draw them all closer to Jesus than they were a minute ago.  Then the next minute, as Him to increase their faith again.  Make them all aware of God's presence every single moment.  Ask God to let them see His hands at work.

Praises

1.  God has been, is, and will continue to be sufficient!
2.  Adam had THE BEST Birthday Party possible.  Donations from friends, strangers, businesses and family made the day all he could have dreamed.
3.  Adam was able to meet several of the Astro players thanks to the generous hearts of the JR Towles family.  Be sure and ask him what he saw in the locker room!  :-)
4.  Newport Elementary Rocks!  Teachers and classmates are going above and beyond to bless Adam and his family. 
5.  God has been, is, and will continue to be sufficient!

Tuesday May 24th

WOW what an awesome weekend we had with Adam's birthday party and with meeting the Astros last night.
Let me start off with Saturday the day of Adam's party....it was such a great turnout and it was very fun. I left early to meet up with LeeAnn and Amber to get things ready for the birthday meanwhile Adam, Rollo, Alayna and Oriana stayed behind to finish getting ready. Little did Adam know that a huge decked out Ford King Ranch truck was coming to pick him up for his party! I think that was pretty awesome and he was so excited! We had face painting, balloon makers, cotton candy, popcorn, snowcones.....it was all so yummy! We also had hamburgers and hotdogs thank you James for cooking for all of us! Amber Asbill made the most delicious cupcakes and cake....the cake looked awesome! Thank you Amber! I also want to thank LeeAnn, Paula, Ann and everyone who helped make this day special for Adam! Adam got so much stuff its unbelievable! Thank you everyone for all his gifts and money!
Yesterday we got to meet the Houston Astros and it was AMAZING!!!
When we first got there we got to go onto the field and watch them have batting practice along with autographs and pictures! Thank you to Mrs.Houser, Mrs.Towles and Jr Towles for making Adam MVP for the day! Soon after Adam and Rollo got to go into the Clubhouse! While Adam and Rollo were in there me and the girls went ot our seats. Adam and Rollo got to meet CRAIG BIGGIO and get his autograph! Adam got 2 signed Louisville Slugger one from JR Towles and the other from MIcheal Bourn! He got a glove from Bill Hall, sweat bands from Humberto Quintero, batting gloves and Astros necklace from JR Towles! Autographed ball from all the players and his Astros hat too! Thank you Towles family for making it possible for Adam!
                                    GOD BLESS~AMBER

Wednesday, May 18, 2011

Wonderful Wednesday May 18th

Let me see where do I begin first of all let me give thanks to the Lord for blessing us with another day! Yesterday was Adam's 9th birthday and the school gave him a surprise birthday party! He got an ipod, Astros bag, Astros cap, Astros shirt, $40 toys r us gift card and a $25 visa gift card. So last night Adam got to pick where he wanted his birthday dinner at and he picked CiCi's pizza....after we ate we made a trip to toys r us...can you guess what he bought...yep LEGOS!!!! And another really cool thing Christian Smith Adam's best buddy got to go home on Adam's birthday how awesome and cool is that?! Danielle thank you for our much needed talk! Ok so now the next event will be his big birthday celebration!! I'm so excited to spend the day with my family and friends! I want to to tell everybody that is helping I don't know how many times I can say thank you but thank you from the bottome over our hearts! I got great news also make-a-wish came out to see Adam today and hopefully within the next couple months Adam's dream will come true!  Adam's endocrine doctor also called me today and Adam's bloodwork from the 12th came back normal. With that being said his adrenal levels are where they need to be and we do not need to change his steriod intake!

Praises:
1. People coming together to make Adam's birthday special!
2. Adam's adrenal levels are where they need to be!
3. Dr.Lotze is willing to look into any treatments that I suggest and that he is waiting to hear back from Dr.Krance

Prayers:
1. Continue lifting Adam up in prayer and asking for complete healing!
2. That the doctors will not overlook anything and that further treatment is the right option!
3. Prayers for Rollo and myself that we continue receiving patience, understanding, wisdom, and love!

Monday, May 16, 2011

Monday May 16th

Hello all sorry we haven't been on here.We had a good weekend.....
Saturday we went to a birthday party and Adam and Alayna had a blast swimming and going on the moonwalk. Saturday evening Aunt Irma, Cindy, Nick and sweet baby Caiden came to visit. We had burgers and family time! Sunday we had church and had Parent-Child dedication for Adam and Alayna! They really enjoyed it.....after church we had lunch with James, Amber and lil Miss Emma....Adam and Alayna's family came too. Rollo and I enjoyed the Asbill's company!
Tomorrow is Adam's 9th birthday......9 I can't believe it! The school is planning a surprise party for Adam!
Adam is doing well and is being the little boy my boy is meant to be! Thank you all for your prayers! We can only take this one day at a time....
I want to tell everyone thank you for all that is helping with Adam's party on May 21st I hope to see everyone there......please keep in mind there might be a last minute change and I promise I will let yall know! The day and the time will remain the same but location might change! Love you all and God Bless!

Friday, May 13, 2011

Good News Friday!

Today, Adam went to see the opthamologist.  Amber and Rollo had previously been told Adam was legally blind.  This made sense as he has been bumping into things from time to time.  Today, the opthamologist examined Adam and said he has 20/30 vision.  He only has a touch of far sightedness and an astigmatism.  The doctor said it isn't even necessary for Adam to wear his glasses unless he wants to do so!

In fact, at this time, there is no damage to Adam's vision or eyes as a result of ALD! 

It was a huge blessing for Amber to hear GOOD NEWS today! 

Adam was able to visit with his friend, Christian today as well.  This was a huge blessing to Adam and to Christian.



Today was a good day!  Making plans for Adam's big birthday bash.  Amber will fill you in on details soon.

Please continue to pray for wisdom, peace and endurance!  Pray for more good news reports and times of encouragement!

Results and Prayers Thursday, May12

“Be JOYFUL in HOPE, PATIENT in affliction, FAITHFUL in PRAYER.”  ~Romans 12:12

Today, Amber and Rollo received the report that Adam’s blood work confirms the Adrenoleukodystrophy diagnosis.  Dr. Lotze said that Adam is exhibiting symptoms of advanced disease.   Because the disease is already advanced, he is not a candidate for a bone marrow transplant.  Dr.Lotze said he would continue to communicate with doctors around the country and with Kennedy Krieger Institute for potential treatment options. 
Dr. Lotze said his office had already contacted Make A Wish Foundation and the paperwork is in process to grant Adam a “wish”.  Adam has dreamed of going to Disney World and Make A Wish will make that (or whatever else he dreams up) possible for Adam and his family. 
Thankfully, Adam is unaware of the seriousness of this disease.  His spirits are high and he tells his mom “I love you” at least once every 20 minutes!   Please be mindful of the fact Adam is unaware and be careful regarding what you share with other children who may unwittingly say something to Adam.  It is of great importance to Amber and Rollo that Adam enjoy being a kid, and continue to “be Adam” without fear or worry about the future and that he not be treated like the “sick kid”.  Adam’s witty personality and big smile will certainly make it easy to treat him just like we did a month ago!
What can you do?  How can you help?
1.        Pray.  Pray again.  Pray some more.  Pray for Adam to continue to enjoy life and soak up all the fun he can!  There are lots of special events planned for him in the coming weeks – Surprise Party at school, Meet the Astros, Birthday Party – Pray for Adam and his family to enjoy these times!
2.       It will be important to keep Alayna and Oriana in your prayers as well.   They love their brother very much and the challenges ahead will impact their world as well.
3.       Pray for Amber and Rollo.  Pray for strength, faith, love, wisdom and peace.
 

Wednesday, May 11, 2011

Prayers for tomorrow's doctor appointment

We will see Dr.Lotze tomorrow at 12:45 pm. He is Adam's neurologist and I am praying that we have the test results! I have so many emotions going thru me right now but thru the graces of God I know that I will be ok! I am blessed to have my husband Rollo in my life as well as my children....I couldnt have asked God for a better man! He has been patient, caring, compassionate, loving and above all has been my crutch and is taking time from work to be with me at doctor appointments. Please pray for us tomorrow as we go to this appoinment for peace, strength, and understanding! One day at a time! Love all of you for following us and all your prayers! I will update everyone tomorrow! Good Night and God Bless! ~Amber

Wednesday, May 11th

Well today has been a great day so far my Aunt Sandra and Uncle Eddie came by to visit and it was good seeing them! Adam had a good morning although he said hes stomach felt weird like if he was pregnant yes he said pregnant he said it felt like something was moving in his stomach! LOL he always makes my day! Well tomorrow we return to the neurologist for a hospital follow up and I'm so nervous about going but I'll have Rollo there with me as well as LeeAnn so I know I will have the support I need! Adam's school is going to have him a party on the 17th but shhhh he doesn't know about it! Then we will be having his party on the 21st still dont know what time but I promise I will let yall know. If anyone is wondering he is into Star Wars, Legos, Tony Hawk, he also has a DSi and a Wii. I got word from Adam's Aunt Laci that the benefit for Adam will be July 10th and I will keep yall posted on that as well. I want to say thank you for all your help and prayers! I know that we are not in this Journey alone and we are blessed to live in such a great community! ~Amber


Praises
1. Adam's faith and spirit are strong.
2. Our family is doing great.
3. Adam is doing great in school.


Prayers
1. God to continue working in Adam's life.
2. That the doctor's have good results tomorrow.
3. Continue praying for our family for peace and strength!

Tuesday, May 10, 2011

A Thank You from Adam

Thank you everybody that is praying for me. I am sad that school is almost over I am gonna miss my teachers and my friends! I am excited about the summer too! Hey guess what my birthday is in 7 days and I cant wait and my party is in 11 days! I love my mom, and my step-dad Rollo, my sister Alayna and my other sister Oriana.
                                                           From Adam Hunter

Tuesday, May 10th

Good Morning to all! What a beautiful day has God blessed us with! Adam had a good morning and so did Alayna....we are getting closer to his birthday and he is counting down the days....7 more days to be exact! Adam is so excited that on Monday May 23rd he gets to meet the Houston Astros how cool is that (mommy is excited too)! Yesterday he got an autographed baseball from J.R. Towles... of course when we found this out Adam had to call his Popo and tell him that he gets to meet the Astros. What an awesome birthday gift! Thank you all who is following us on this journey and thank you LeeAnn for all that you are doing for us! Love every single one of you and God Bless!! ~ Amber

Monday, May 9, 2011

Prayers for Adam tonight.......

Adam is having a rough night tonight he is very emotional I'm asking that we ask God to comfort him! The doctor said he would have mood swings, be happy one minute and crying the next....well that happened at dinner time tonight. As a mother it breaks my heart to see him cry over the school year ending he is worried about Mrs.Cannon and Mrs.Simmons! He is now doing fine and I hope it stays that way through out the night! Thank you Jesus in all that you do and please say a prayer for Christian Smith and his family yall are always in our thoughts and prayers! ~Amber

Monday, May 9th

Today, Adam returned for his first full week back at school.  In his typcial, outgoing self he made it clear, I was not to walk him into school!  He was determined to go in by himself.   Even though I want to keep him in a bubble of protection, I have to let him be the little boy that he is and have fun!

I am excited about having this blog.  I will keep everybody updated here.  Your prayers and support mean everything to us.  ~ Amber

Praises:
1.  Adam has his appetite back.
2.  Adam's spirit and absolute faith he is ok, not sick, and is going to be ok.
3.  Adam's school is 100% behind him about going back to school.

Prayer Request:
1.   Please pray for Adam's healing. 
2.   Upcoming appointment on Thursday, May 12th with neurologist and Friday with the opthamologist.  Please pray for good results and God's grace and peace during the appointment.
3.   God's continued peace and strength for Adam and our family.