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.