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!
Tuesday, November 1, 2011
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!
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
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.....
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
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!
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!
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