Busy, Busy, Busy

                   Ever since the adoption we have been really busy doing so many things. We have been over joyed because of the adoption. Now when we say Aidan Lee its really Aidan Lee! That feeling is the best feeling ever oh and also knowing that no one can ever take my son away. Now I have a few problems with his medicaid and certain things but hopefully everything will be okay. We are taking the kiddos to Disney for Christmas. They are really excited! We are fortunate that we can afford to go this year. We have been trying to save and cut some things like i.e. mommy wants new flooring. One thing at a time. I got some sweet messages from some fellow DMD parents and some family that gave me encouraging words about what I did for Aidan. Stephen and me are very blessed to be able to adopt Aidan. He is an added pride and joy for our family. We weren't saying no to a third child but we didn't really make a decision about it but God had other plans for us. The reason I am a strong willed woman is because of one woman and I want you to know about her. Her name is Michelle but to me her name is MOM. My Step Dad and my mom started their lives without kids. We all moved out and they were traveling and enjoy life without responsibilities. That all changed. There were some circumstances that I will not go into but they were faced with three children that needed them. It was their grandchildren. My mom and step dad decided to take in these children and raise them. They didn't do it out of duty. They did it out of love. At first I think they had a period of adjusting with no children from not having young kids. (I'm the youngest and I was 20 at the time). They have raised these three kids for the past five years now but that's all the kids know is this life. Its not poor kids It's what great kids they are. I am strong because my parents show me that anything is possible and you put others before you. We didn't have to raise Aidan. We choose to do what we needed to do and what we wanted to do. We are faced with decisions every day and some times we take the wrong ones but the good ones are that much sweeter.



This is the sweet part

ADOPTION

We are finally here. I am not sure how to describe how happy and feel accomplished on Aidan's adoption. It was a long wrong but a great ending. Aidan's name was changed and he is now
Aidan Lee Cabe. He took my husband's middle name. Here is some highlight pictures on that so special day!

Aidan looking at mommy!

This is my sweet baby boy

For Christmas I got to be a CABE

Adoption Certificate 

Aidan's trip to Ohio

We got no news but hey thats good news to us right? He had several tests done. He had a ekg, echo, and ability test. He did pretty well. He only cried a little. They did recommend steriods on the weekends for Aidan. Stephen and me discussed it over and over and right now we have decided no. We might change our minds later but right now we are not okay with it. He is still our baby. We have a new date for the adoption but I am not posting until it absoutely goes through. I do not want another upset because court cannot get it together! We will be going back to Ohio in November 2013 and they will start some more extensive testing. Right now Aidan is doing well. A few bumps some days but we get through them. He is enjoying school and of course still wrestling with his brother. We are very hopeful for the upcoming year and before you know it we will be having another MDA walk a thon. So get ready everyone!!!!

  Aidan's Echo(he was watching the Cars Movie)

  Aidan's EKG my poor baby crying :-(

The Next Day

Everyday through the week I do something that is productive with DMD. I do not try to research on the weekends because I have noticed it will change my mood if I do. I try to make the weekends about family! Every time I have an appointment or something to do with DMD I am okay when I do it. I feel like its a mission and need to get these things accomplished but the NEXT day I feel like I got hit by a truck. It's a wave of emotions. It is getting easier as the months go on since Aidan's diagnosis but the hurt never goes away. I know I am stronger than I was a year ago. I know I am better person than a year ago but I still feel the aftermath of doing things. I know I am doing what I can at this moment for Aidan but I have to realize I need to take things slow sometimes and not rush or stress about things so much! Aidan is doing well. He still hates his leg splints and we are going back to the doctor to get them fixed. In a week we are going back to Ohio to Nationwide's Hospital and see his doctor. I am excited, stress, and have anxiety all in one. This time my husband, Stephen, is going so it will be good for him to hear what the doctors have to say. I know part of him feels that I am a crazy over protective mom sometimes. lol.

Mommy needs to stop with the videos! lol

This video was to his nanny!

JOURNEY

I started this blog little over a year ago. It was therapy for me I guess and now people ask have you put new posts up yet. When I came up with the name The Cabe Journey I really didn't know what I was committing to or what I really was gonna write about. I actually hate writing. I knew when Aidan's diagnosis came it changed our life completely but I didn't know how or how much it would. It has became a journey in its self. DMD doesn't define us and it effects our journey in life but we make our own journey. I am glad I named it the Cabe Journey because this isn't the DMD journey its about the Cabe Family's journey in life. We still have our bad and good days. We still have some moments we do not even want to say the words DMD. Sometimes we enjoy just to be in denial with the whole thing. Then there are times when we are proud to say our son has DMD and we will FIGHT!!! We are happy that our son is smiling and saying words now. I have learned through all of this is its okay to sit back and just watch life. I cannot fix everything and do every little thing anymore. Its time to just go with the journey! This song sums it up!



                                                               "I Choose To Believe"

[Verse 1]
It didn't take long for my whole world to change
One phone call now life will never be the same
It's like I'm watching my whole world go dark
Nothing makes much sense 
But still with all my heart

[Chorus]
I Choose to believe
And never give up hope
God is good
He's in control
I'll keep the faith
I trust in His way
Even when His face is hard to see
I choose to believe 

[Verse 2]
It's easy to believe when everything goes our way
But we are all gonna go threw fire to test our faith
Life hurts so much that we can hardly breathe
We're begging to know why
But it's such a mystery 

[Chorus]
I Choose to believe
And never give up hope
God is good
He's in control
I'll keep the faith
I trust in His way
Even when His face is hard to see
I choose to believe 
Yea
Yea

[Bridge]
Even when my world is shaken
Even when my heart is breaking
Even when it seems He's taken so long

[Chorus]
I Choose to believe
And never give up hope
God is good
He's in control
I'll keep the faith
I trust in His way
Even when His face is hard to see

[Chorus]
I Choose to believe
And never give up hope
God is good
He's in control
I'll keep the faith
I trust in His way
Even when His face is hard to see
I choose to believe 
I choose to believe

Jesus, Jesus how I trust Him
How I prove Him over and over
Jesus, Jesus precious Jesus
Over grace to trust Him more

Talking!

Aidan is enjoying school and learning a lot. He is becoming a little toddler but horrible threes have came in full force. We are still working with the leg splints. First week of November we go to Ohio for Aidan's 6 month check up. I am scared, worried, but excited and trying to do what is best for him. We still have a few hard decisions to make but we will do it together.

Sleep at Night?

Last week at work a young guy came in to my office and saw the change jar I had at my desk for Aidan. He said I know what Muscular Dystrophy is but what is Duchenne? I began to explain my son's disease to him. He looked at me and said that is awful. How do you sleep at night knowing your son has this disease. I was stunned at someone saying that to me. I told him I go to sleep knowing my son had a smile on his face when he went to bed. Knowing everyday we give him our love and take in every moment we can. At first I was a little offended by his statement but I realized probably many people think that when I explain to them about Aidan's disease. We go on everyday thinking about all kinds of stuff. One good thing from the DMD diagnose it made our family realize the importance of moments, enjoyments, and take one smile at a time.

Next on order of the past week is the leg splints. It's been a trying week! Aidan knows how to take them off. He doesn't keep them on long. We are trying our best to make him keep them on. We don't blame him, what three year old would want to wear these at night. What adult would wear these at night? We are just gonna try our best and hope for the best. One night at a time here we come!!!!

3RD BIRTHDAY!

 FIRST DAY OF SCHOOL!

 MAKING FUNNY FACES AT MOMMY!

 FIRST DAY OF SCHOOL!

 

 

Aidan is 3 today! I cannot believe my baby is three. He is my last baby! No more for me. Its bittersweet. I thought about how we got here and how we are going in the future. When Aidan was born I didn't know I would become his mother. I was there when he was born. Some might have thought I was crazy to take on another child but Aidan just had this thing about him you could never ignore. He smiles all the time and he gives the biggest hugs. Oh don't worry terrible three's have hit and there will be some trying days but I am glad that I got to be the one who puts him in time out and who kisses him when he gets hurt. Aidan has turned into a character. He laughs, plays, and loves to get into everything. He has grown so quickly since last year especially at the R-Ranch. Use to be a chore to go to the R-Ranch when he was a baby. Now he just wants to do whatever the older kids are doing and some things I wish he did not see them doing. lol. Next month I am proud to announce that our adoption will be going through! On November 5,2012 Aidan will be ours. He has always been ours in our hearts but now he can take on my husband's name. This experience has been trying, emotional, but exhilariting and happiness rolled into one. Aidan's name will be changed. He is keeping the name Aidan but we will announce his full name next month! :-)

August 2012

August was a hard month for us. It was a year from Aidan's diagnosis. End of July we lost a great man, Uncle Mike. It's a wave of emotions. Through all this I lay my head down to sleep and realize that tomorrow will bring new emotions and the ones that were there yesterday are gonna start healing. This is the face I get in the morning before we start our day. He doesn't know it's been a year or that mommy had a bad night sleeping. All he wants is to read his book.

A Year it has been......

It has been a year since Aidan's diagnosis. WOW really? I still can feel the pain and the sorrow. Feels like yesterday sometimes. First week of the diagnosis I cried every single day. I didn't think I would come out of this roller coaster of emotions. Then the next week I cried every other day. Now I cry once in awhile when I just need to let it out. Aidan has changed so much since last year. He is still doing speech and physical therapy. He does say words and sometimes puts two words together. Each day I remember that we were choosen as his parents for a reason. Sometimes I wonder why my little boy? why him? but then I remember what my friend told me when I was having a bad day a year ago. She said why not us? We were choosen for this for a reason, So why not pick us. We are strong, encouraging, and we will stand up and fight. Every day I try and remember that. We still have our struggles and we still have to make some hard decisions but we will do it to the best of our ability and do whats right for Aidan. This year has made me stronger and has made me realize things that I took for granted. I adore being Aidan, Jacob, and Abagail's mommy.

Guardian Angel

Sorry blogging has became the back burner for me. I know sounds horrible but life gets busy sometimes. I wanted to let everyone know on July 27th 2012 a special man went to heaven. My uncle, Mike, fought a long battle and never gave up! He is an encouragement to everyone that the little things don't matter anymore. We all have problems, We all have issues, but there is someone out there losing a loved one or battling something severe. Everyone asks me How do you go on? How do you live knowing your son's diagnosis? Well its called living for a reason. We live for the time we have, we live for that laugh from our kids, We live to give our kids a life. Everyday is a struggle I dont want to sugar coat it but everyday is also a gift. Each day I know that Mike was around me for a reason and we endured a lesson in life by his death. Going to bed at night it helps me to know Uncle Mike is watching over my kids and they have another guardian angel. Each day I wonder if I am making the best decisions for Aidan's care or if I am taking the wrong steps but there is no handbook for a child with Duchenne. There isn't a book you can pick up at the library and tell me how to deal with everything. We deal with it the best we can and we work through it.

Update

Haven't been blogging lately! Just been so busy with the kids out of school for the summer and now getting ready to go back to school. Updates on Aidan. Aidan has been doing good so far. We did go to the MD Clinic two weeks ago. They checked him and went over so exercises for his limping but other than that he is just being a two year old boy. We do have to make a few decisions before we go back to Ohio in October. The doctor in Atlanta and in Ohio are recommending Steriods for him. We haven't made a decision yet but we are thinking of the best options. He also has an elevuation in August for a preschool for special needs children. Not sure how I feel about it but I am gonna at least do what is best for him and go from there. I still consider him my baby so for him to go to preschool its kind of hard. Here are some highlights of the summer:

Hiking for the first time!

 I am just chilling!! :-)   

                  Sibiling Fun!

Race for a Cure!!!

Each day is a race against a cure for Aidan. He is just a loving little boy and this disease is an awful one. Each day I go on Facebook and see many parents posting things as in prayers, thankful for answered prayers, wishing for this to go away, just wanting the pain to go away or just peace for their family. We stand together as parents. We don't want this to become us but this is us. We are a family even though we didn't know this family even existed. We will be there for each other. Did i want this disease to be a part of our life? NO but am I glad that I am part of a DMD family? YES

Aidan is growing like a weed! He is thriving and doing well. We are so fortunate to have three wonderful kids. He has brought joy and laughter to our family. Abagail is his mommy #2. Jacob and Minnie left for a week to go to Florida and I didn't realize how much they help me with him. He didn't know what to do with himself. Aidan doesn't really have many things going on at the moment. Next month he is going to the MDA Clinic to meet the new doctor. In October he goes back to Columbus, OH to the great doctors up there. He is still having some issues but they have been far and between. We enjoy every second with him and know that we will get through anything!

Team Aidan

My favorite picture........ How can you say no to joining TEAM AIDAN?

MORE THAN MOST.............

                           

The title of this blog is about more than most. More than most Aidan has went through a lot. He has overcome many things and we are thankful for that but sometimes you have to think he is going through more than most people would have to endure in their lifetime. Aidan has been hospitalized three times in the past year. First one was in March 2011. He was in there for a week. We still don't know what caused it. Second one in July 2011. He had a muscle, liver, and skin biopsy. He stayed for five days. Again in May 2012. He only stayed two days but it was the worst two days. We were in a unknown city and they couldn't figure out what was wrong. These three hospitalizations doesn't include the numerous doctors visits that he has went to. We probably went to over 30 doctors visits this past year. I cannot compare Aidan to other children but I can to my other two children, Abby and Jacob. I never knew how fortunate we were as parents to have children with no illnesses and only getting a cold or something of that nature. It makes you appreciate more. It makes you want to document every smile and every milestone with all my three kids. You only have that one moment and you cannot get that back. We need to be thankful for what we have and how we got there. Now I am not saying I am happy we went through these experiences but I am appreciative that I have learned things through this journey.

Myrtle Beach 2012

We went on our annual Myrtle Beach vacation. I was so thankful to finally have a vacation because of the trip Aidan and me had. This is the first time Aidan walked on the beach.

He actually had a really good week. He did a limp a few times but we were so glad he had no other issues. Right now we are just trying to live life to the fullest and have fun with it! The kids had a blast and that's what my husband and me want for our kids!

Aidan now has starting smiling all the time and laughing. I love his smile and adore his laugh. If someone asked me to describe Aidan he is the sour & sweet gummy bear. He is so mean sometimes and then sweet as can be but we love him.

Columbus Trip

Sunday 4:00 a.m.

My mom, Aidan, and me were on our way driving to Atlanta Airport to get on a plane to Columbus, OH. I was excited and nervous. I was afraid this was gonna be waste of money or waste of time. We were schedule to see Dr. Wong on Tuesday but left couple days to see some family.

Sunday 10:00 a.m.

Aidan started swelling at his feet. We thought he got some mosquitoes bites from the t-ball game the other day.

Sunday 3:00 p.m.

Aidan woke up from nap throwing up. I thought maybe from plane ride it was tough on the little man.

Sunday 8:00 p.m.

Swelling got worse and now he is starting to limp. Maybe time to go to Nationwide's Children Hospital in Columbus, OH.

Sunday 10:00 p.m.

Aidan kept throwing up after having anti-nausea medicine and his feet were getting worse.

Sunday 11:00 p.m.

Aidan has been officially admitted to hospital

Monday 4:00 a.m.

Finally got into a room for him to keep getting IV fluids. I have been officially awake for 24 hours.

Monday 6:00 a.m.

Finally took a nap and maybe just maybe Aidan won't throw up.

Monday 8:00 a.m.

Nurse and doctor come in and let us know that Aidan needs to have a MRI done on his brain and a ultrasound.

Monday 12:00 p.m.

Aidan went under anesthesia for the MRI. He will be under for awhile and they will watch him closely because of his Duchenne.

Monday 4:00 p.m.

Aidan's MRI came back normal and his ultrasound was normal. Called Dr. Wong's office to let her know that Aidan was admitted and the hospital is willing to transfer to her hospital so she can see him. She said she could not see him and that we would have to come back another time. I was so upset by this. I came up here for answers and questions to my answers. my nightmare has come true this was a waste of time. In the meantime I let the nurses know what the other doctor said and she said she would see what she can do. The wonderful doctors were fantastic and they got me an appointment for Wednesday to see Dr. Mendell. I quickly got on the computer and researched him and his team. Heard great things.

Monday 10:00 p.m.

Aidan was doing much better and they were discharging him so he can get some needed rest and he stopped throwing up. The diagnosis..... they think it was cellulitis. Poor baby cannot catch a break.

Tuesday all day

Aidan and me took a well needed four hour nap. We visited with family and tried to just comprehend what has happened the past couple of days.

Wednesday 12:00 p.m.

We met with the wonderful team at Nationwide's Hospital. My mom and me came out of that hospital with hope and reassuring that we were doing great things for Aidan. Now we have to come back every 6 months for them to look over Aidan's care. I just felt I finally had answers.

Thursday 5:00 p.m.

Finally back to home. Laying on the couch and cannot believe what these past of couple days have done to my body and my mind. Just think of what Aidan feels like but guess what he is running around like nothing happened few days ago. We need to feel like that too. Maybe in the morning I will feel better. lol

Less than a week.......

                                                                            

                Less than a week we are going to Cincinnati, OH. I am having mix feelings about it. What to expect and how to deal with it? I usually don't blog about stuff like this but its says the Cabe Journey. It's emotional. Each day is getting easier to enjoy life and let the small stuff go but also when you have bad days it can make your day horrible. It teaches you to enjoy the small things. Yes the laundry needs to be done but what about playing with the kiddos outside instead. Now don't go to your husbands and say hey I cannot do my laundry because I need to play with the kids, I don't need husbands coming to me. LOL. Just like the book I enjoyed writing in the book it was kinda like therapy but its also hard to read the book. You are so proud to do something for your son and other parent's sons but its hard to know your son is one of the children with DMD. Right when I found out about Aidan's diagnosis I stayed up all night and made a slide show of Aidan and his disease. I have it on YouTube. I cannot watch all of it yet maybe one day but just not yet. I researched and researched and people didn't know what this disease was. If you say cancer they say awww I am so sorry but if you say Duchenne Muscular Dystrophy their like oh, They don't know if they should be sad or should say something. We have a few people say to us well you don't know that and you never know things will change. I know we don't know whats gonna happen in our future but the down play they give you i don't like. Duchenne is a serious condition. Some websites state its the most common fatal disease in the Muscular Dystrophy group. If you are a parent and you read FATAL disease how do you think your heart feels. Your heart sinks into your stomach! It's a process that you go through emotionally. All these feelings come all at you and every day you get new feelings and some fade away. You have to take one step at a time. You have to take in each breathe and savor each moment. We cannot predict the future as much of you know me I have been wishing to predict the future. You have to live through it.  The two words that help me each morning that I say to myself is HOPE and FAITH. I have hope for the future but I have faith that it will be okay.

Saving Our Sons & Daughters II

The book is in! I had a fabulous opportunity to write in a collaboration book with other parents to share their stories about DMD. If you would like to order one you can go to this link 

http://www.mistyvanderweele.com/sosd2orderpage/?ap_id=thecabes17

OR

I have bought 25 books so if you would like to order one just through me let me know my email is 

elainecabe@gmail.com

~Growing Up~

Each day we are enjoying seeing Aidan grow up with his brother and sister. Abby takes on the job as mommy #2. When he cries she is right there to pick him up and tell him he is okay. Now Aidan isn't the greatest youngest brother but he takes his job seriously. LOL. Especially when he thinks its funny to pull Minnie's hair. Jacob enjoys wrestling with him. As mommy tells them to stop I will have a smile on my face just because I am happy they play like nothing is going on in the world. Aidan is having issues with his legs. Some days he limps, sometimes he wakes up in the middle of the night, and sometimes he just says mama and rubs his hands up and down his leg. We do not know what this all means but I hope I will find out. We take one moment as it comes and we enjoy the little ones especially. I am fortunate that many love Aidan. He goes to a wonderful daycare Children's Learning Center in Buford, Ga. The owners are especially sweet and loving to my children. Aidan's teacher, Ms. Sheila, is amazing with Aidan. She makes sure he is well taken care of and spoils him maybe little too much. LOL. Together we do it. I cannot take all the credit. I am the Mom but I cannot do it my self. I am fortunate to have all the help and people in my corner.

Time for some information!

We would like to ask for prayers. My Uncle Mike has been battling cancer for awhile now. He has not been doing well. Even though he has been battling cancer he still has his faith and courage to go on. I admire him for that. I know we will fight for Aidan and I know I will have my bad days but thinking of Uncle Mike I just know I can fight this fight.


On another note........We got this great opportunity for Aidan to be seen by some doctor's in Cincinnati. I have heard great things about these doctors regarding DMD. We are excited to announce that we will be going there next month! I am excited and nervous. Maybe because I have to get on another plane but that is besides the point. Lol. Aidan will get to go on his first plane. I had to wait until a week before I turned 25. 

Easter 2012

Easter Sunday at Grandma's was a blast! Kids love going there for Easter Egg Hunt. That's  all the talk about when you mention Easter is going to Grandma's. We also took the kids to Build-A-Bear for Easter. It was the kids first time and they had a blast! Now Stephen and me might been crazy to go to the mall with six kids but we all survived. LOL.

MDA ATLANTA WALK 2012

We had a fantastic time for our first MDA Walk. I was nervous I am not gonna lie. This is the first official thing I did with MDA and first thing I have done because of Aidan's disease. I had great support from everyone this year. Our grand total of donations was $1500.00. We were pleased to have that much. I was blown away by everyone's donations and prayers for Aidan. Just thinking of my son with a disease is heart breaking but knowing I have people in our corner makes it so much better.  Aidan is just a wonderful little boy that will just put a smile on your face. We will fight and keep fighting for my son, the other son's and the son's that couldn't fight anymore.

Shirts are in!

Just wanted everyone to see the shirts we will be wearing on Saturday for our first MDA Walk at Turner Field.

We are so excited!

New Colors!!!

I just received my shipment in for new colors. If you would like to buy one let me know. You can email me at elainecabe@gmail.com and they are all free shipping. Only $3.00 each!!!

Get Ready! Get Set! GO!!!!

We are getting ready for our first MDA Walk. Its next weekend and the donations are coming in. So excited. We have wristbands and pins for sale. TEAM AIDAN is having a blast getting ready!!!! Anyone would like a wristband or pin let me know their $3.00 each with free shipping. We will have a cure for these boys.  We will stand up for them when they cannot.  We will walk for them when they cannot. We will do it together and make sure we fight a good fight!!!!!

Wristbands for SALE!!!

Here are some colors that I have on hand. I will be getting some more colors end of this week. If there is a color your looking for let me know and I am probably getting it in. They are $3.00 each. All procceds go for a cure for DMD in honor of Aidan!