Thursday, February 14, 2013

How sweet it is to be loved by you!

Well hello there! It has been a very long time since I have updated this blog! Today is Valentine's Day and I have 3 amazing Valentines any one could ask for! Last night I started crying because I remembered what Adam asked me out of the blue, he said "mama if I die young will you still love me and always remember me" at this point of Adams diagnosis we had not talked or even mentioned that he was gonna die. Children are amazing and from the day he was diagnosed until the day he stopped talking he told me "I love you mama" a hundred times a day if not more! I think never mind I know that was Gods way of giving me a lifetime of I love you's, and for that I'm very grateful! So here is an update on Adam. We have had a rough week with fever and congestion but today he is doing much better! As far as the diagnosis of ALD Adam has not had any major changes. He has developed sleep apnea and sometimes wakes up thru the night because he is having trouble breathing. Other than that he has just been on this steady streak of nothing major happening! Thank God! Here is some good news but then not so good news. Since Adam has had no major changes they want to take him off hospice until he starts declining again. Yes how amazing is that but here is the downfall, hospice is great as far as having a nurse come check on Adam twice a week, having an on call nurse 24/7 and they supply diapers, wipes, chucks and meds and they all get delivered to our house. So we are waiting on a sleep study and an MRI to show that Adam is still declining just not as rapidly ad he was. Alayna had been doing quite well. She is an amazingly strong 7 yr old that is going thru so much in her life! She does struggle on a daily basis with everything going on with her brother. I want to thank those that think of her and want to spend time with her outside of the house. Her everyday life revolves around Adam and she hardly ever gets away. She does make little comments about how much she misses her brother. She misses them playing, talking, fighting and just hanging out. Well this is it for now I will try to start updating more often! Please continue to pray for Adam and our family! Thank you and God bless each and everyone of you!!

Monday, October 22, 2012

We Are Here And Doing Great!!

It has been a very long time since I have updated this blog. First off everyone is doing well. Adam is back in school and I kept him in the 4th grade just because the teachers and the nurse all know him well. I am very comfortable with him being there. They know him well and if something is wrong they know what to look for. He is in very good hands at Newport Elementary schoo! Today was a special day for Adam. He got to go see his friends at Drew Intermediate School. Im so proud of how well behaved all the kids were and how excited they were to see Adam. I took many pictures and as soon as I find the cord to put them on the computer I will have them up. It was a very fun and although it was just that I couldnt but help to think I HATE YOU ALD my son should be here with all his classmates in the 5th grade. I quickly pushed those thoughts away and Im just grateful that my son is still here. He is still smarter than ever and remembers everything. Things are getting so hard Adam is getting huge and its getting harder and harder to lift him. Im so afraid that if I let someone else do it they will hurt my baby and then the Wrath of Amber will come out. Alayna is doing well shes still crazier than ever lol.
Adam had a horrible seizure last week and scared me horribly. Im trying to see the bigger picture here and trying to have faith that everything will be ok...but theyre not...I know what the outcome of what we are going through is gonna be, things will not be or alright. Things will not get better they will get worse. Im a mom Im suppossed to make everything better but I cant.
I had a friend write this to me:
Christ does not immediately calm the storm, but He is always willing to calm His child on the basis of his presence. 'Dont worry! Im right here! I know the winds are raging and the waves are high, but I am God over both.If I let them continue to swell, its because I want you to see me walk on water. This set of prints can be seen only in a storm. Im in this with you, and I love you more than youll ever know.' We'll probably never learn to enjoy our storms, but we can learn to enjoy Gods presence in the storm.
We have been through a huge storm....a hurricane this past year and a half.
Things will get harder from here on out I am Adams caregiver but I must find a night time job to helps ends meet and to take all the burden off my husband. Im exhausted now I can only imagine when I start working. Thank you evryone for your thouhgts and prayers we love you all!!

Thursday, April 26, 2012

God is Good...All The Time!

Wow it has been a very long time since I updated the blog!
I hope as all of you read this that yall are in good health and spirits! That no matter what is going on in your life you should always count your blessings and give thanks to our good Lord!
"Write your hurts in the sand and carve your blessings in stone"
April 27,2012 is a whole year that Adam has been diagnosed with this horrible disease Adrenoleukodystrophy. It has robbed my family of so many things and has robbed my son of so much. It has taken his ability to walk, talk, see and eat. It HAS NOT taken his love for life,his personality or his mind! Adam has proven some of the doctors this time last year they didnt know if Adam would even see his 10th birthday and they for sure told me that when he started losing his everyday functions he would also suffer from dementia. All I have to say is that this boy does not suffer from an ounce of dementia at all! As a matter of fact Adam has returned to school as of April 18th!! Praise God!!
God works in mysterious ways and we will never even begin to understand the great working of our Lord! A year ago today is when I was fed up and wanted answers and thats when I decided to take Adam to Texas Childrens Hospital. When I decided to take him I really didnt know what to expect but all I kept thinking was either they will think its serious enough that they will keep him and do an MRI or at least we would leave there with a referral to see a neurologist! Never did I expect what the outcome would be...I mean who would??
So today Adam and I went to visit our friend Christian and his mom at TCH and they are in the same exact room we were in exactly a year ago!
Is that a God thing or what??
I have been planning to go this day (for 2 weeks) to spend the day at the hospital with them as he was gonna have an out patient treatment but he fell ill and was admitted on Saturday!
Here is what I think:
God wanted me to see where we are a year from Adams diagnoses, yes A LOT has changed but I still have Adam and that alone is a blessing! My family has been through so much this past year. If I actually knew what I know today about where we would be in Adams diagnoses and how happy and blessed we are I would think I was completely INSANE!! Danielle and I went down for lunch and as we were eating we actually saw the nuerologist that diagnosed Adam. I was telling him "can you believe it has been a year since you told me the horrible news?" He then walked up to Adam said something in his ear and kissed his forehead. He said his goodbyes and well wishes and Danielle then told me that his eyes were teary and he was about to cry! Im pretty sure that was also Gods plan for us to be having lunch the same exact time Dr. Rivera was getting his lunch. Like I said GOD IS GOOD!!
I have a lot to be thankful for and many people to be thankful for!
First and for most God without him I wouldnt have the strength, faith and hope to face this head on like I have!
My husband who has been an absolute blessing not only to me but my children. He doesnt have to do all the things that he does but yet he chooses to. I dont know of to many men that would stick around in this situation but he has and Im forever grateful!
LeeAnn...a year ago she told me " I will walk this journey with you" and she has through the good times and the bad. She is a blessing to me and my family and so many others! I know that no matter what shes doing she will be there and Im so grateful for her and her family!
Many, many women from our church...... I tried to list them all, and every 5 minutes I think of someone else!  That is how many people have blessed our life!  So I am not going to try to list everyone, but please know, you have all blessed us so very much!
 Im grateful for all the woman at our church! (and the men too!!!)
Newport elementary will forever be my favorite school! They just rock!!
Well its late and I wanted to just write how God good is and how blessed today that I am today! Hope you all have a blessed night!

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 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!!

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!