Today is Rare Disease Awareness Day. Mitochondrial Disease is considered a rare disease. Please make yourself aware of what this disease is and does to many children. 70% of those identified with mito are children under the age of 5 and every 30 minutes a child is born that will develop a mitochondrial disease by age 10. Please become AWARE!! Awareness is the key to find a cure.

All in all we are good. Had another busy weekend. The next two weeks we will be going to some of our yearly appts. Monday is our usual therapy day. Tuesday we will see the cardiologist. Wednesday is when we see the behavioral counselor. This so far is going good. We are taking baby steps in the right direction. They following week we will have 5 year appt with ped, urologist, and genetics. I have been trying to research camps for Brayden this summer. Bailee will also be doing some camps. Little more difficult to find them that he can attend.

Along my journey of the last 2 years, I have met some AMAZING people. I have so many people I can call on if I need a little advice, need to vent or just to chat. I could not make it without my wonderful friends. Thanks you, Thank you♥

I hope you all have a great week! On May 23 I will be doing "Walk Now For Autism" Please check out my page. Thanks you to those who have already donated to this walk.
http://www.walknowforautismspeaks.org/georgia/braydenthomas

Thank you to all of you who came out Saturday to support our cause, Crop for a Cause! It was a GREAT turn-out I enjoyed every minute. We raised $5422!!!!!!!!!!! This is double what we raised last year! YAY!!

Sunday was Bailee'b birthday! She is 8!!!!!!!! I can't believe she is already 8. We celebrated at the house with some of her friends and had a great time! She is truly a beautiful little girl. She has so many great qualities. I am so proud to be her Mommy!!!

Today, I got a call from Brayden's Neurogenetic doctor and she did give me his DNA sequencing results. I do not have the report yet and will be going in next week to discuss these results with her. To sum a lot of information up, they did find a nuclear gene mutation that was consistent in me and him. In his there is also a mutation in his complex V mitochondria cells. He has been confirmed to have a definite Mitochondrial Disease. We have known he has had it but this confirms where the dysfunction is. This does not change anything. Some more test answered. He has a VERY rare mutation and because it is so rare there is little to go by. I hope to get the report tomorrow. I am a visual person and want to see the information!! I pray all the time for my little boy. We are so blessed to have him and that he is for the most part healthy. The thing that scares me I guess is that it can change in a matter of minutes. She did tell me that the next time he is sick like he was, I need to take him to the ER for fluids:/ I was trying to do this at home but did not work. I will know next time. Thanks for checking in on us. We love all of you:)

Come out today and join us at Crop for a Cause! All the proceeds raised will go to United Mitochondrial Disease Foundation and Children's Healthcare of Atlanta!!! If you are unable to attend but want to come shop, come on by! We will have lots of vendors with adorable merchandise and of course lots of scrapbooking supplies. Look forward to seeing you there!!

I had a not so good wake-up call at 1:30 this morning. Brayden came into our room and said "Mommy I throwed up". Oh no:( And it all went down hill from there. At first I thought maybe he ate to much valentine candy. But at 3:00 it happened again. Then every hour. He finally stopped about 2:00 and has had a fever all day. With his disease we have to keep a watchful eye on his hydration. He can dehydrate in a matter of hours. So, today I have made sure he had fluids whether he threw them up or not I gave him a little bit all day. Right now his fever is up to 102.7 and he is laying on Daddy. Thank goodness we are out of school this week so we are able to just be home. It has been a L-O-N-G day. I am exhausted and will be going to bed very soon. Please pray that his fever breaks and we can maintain his fluids here at home.

Hugs!

Finally has had a day at home:) This week was so busy. I like staying busy but this week literally stressed me a little:) I finally got a hold of Brayden's neurogenetic doctor. COQ10 levels are still very low. We are hoping that in 2 weeks when we draw again they will be up. He is on the recommended COQ10 that he needs to be on so we will see. Also, his DNA sequencing is finally done!!!!!!! But, the tech that reads it was not going to be back in till this next week so we have to wait for her to call back next week. The kids had there Valentine's parties at school and that was a lot of fun. I love being able to go in and be a part of their school activities. Thursday night Bailee had her performance and she had a speaking part and did great!! Way to go big girl:)


Friday I was at Brayden's school in the morning and had a blast with those sweet kids and helping with the Valentine snack. I also was able to read to his class.


Then I headed to Bailee's school and we did V-day stuff there:) They did a craft, had cookies and juice. They had a great time. After school Bailee went to a friends house and decorated cupcakes and just played!




We later let the kids go out and play in the snow. It was lots of fun. We got about 4 inches as the evening went by. It was so pretty to see all the white stuff falling.



So all day today we have been home and playing in the snow!! Bailee and I did go out for a little while to do a little shopping. The kids are off from school next week so we will be busy bees. It is Bailee's birthday week. She is having spend the night company then her big party next weekend:) Can't wait!! I hope all of you have a great Valentine's Day. I love my family and am so glad to be able to spend Valentine's day with them♥♥ They are my LIFE!!

Who Dat??? GO SAINTS!!!!!

What a game! We had a fun time at home. I cooked a good dinner, had cupcakes and ice cream and Bailee was our seat attendant!! She gave us all assigned seats to sit in too:) To funny.




I hope all of you have a great week. We have a busy one:)

Hugs~

Brown Bear, Brown Bear, What do you see..........


I LOVED him reading this book. Bailee also read for me but for some reason I could not get her's to upload. Still working on it though:)

We are having a good weekend so far. Been lazy today and just hung out at the house with the family. We are babysitting Gizmo (Mom's dog) and he is great entertainment for the kids.

I will probably end up taking Brayden back to the ENT about his runny nose. It is really bad today. I am going to call them next week. We have a super busy week next week and am looking forward to the kids being home the following week for winter break!!!!! Please remember the Bowden family. Angel Aubrey earned her angel wings Thursday morning.

“He protects you day and night. He keeps you from all evil and preserves your life. He keeps his eye upon you as you come and go and always guards you.”
(Psalm 121:6-8)

GREAT Week!!

It is only Tuesday a and this by far has been the BEST week we have had in a long time. Brayden has been so good at home and school. Therapy was good yesterday. Today we had the behavior counselor out again to do some more evaluating. I hope that our good week continues:)



I can not believe that we are already in February! This is a big month for us because it is Bailee's birthday month!! She is sooo excited about her party. Love is really in the air:)



Brayden continues to battle a cold. He was doing do good then when he came off his antibiotic his nose started running again. He is now back on his 1200 mg. of the COQ10. We were off for a while due to it not being covered by insurance and the compound was not working (according to labs. Thanks to my step-dad for getting the right brand and working to get it covered!!! That is a lifesaver because it is VERY expensive otherwise. So far so good. It usually takes several weeks for it to work properly. Still waiting on the results from labs drawn a couple weeks ago when we went to his mito doctor. Brayden continues to be delayed in the fine motor skill area. This is something that is going to take a lot if work and patience!! He can finally peddle a bike, jump forward and many more gross motor skills.

We are so blessed to have such great family and friends that we can call on when we need to. Thank you to all of you who pray for my family daily. We can see prayers working everyday. Please keep the Bowden family in your prayers, little Aubrey has been sleeping since Saturday and they need all the prayers they can get. Here is her CB site http://www.caringbridge.org/visit/aubreybowden.

Have a great rest of the week:)

Hugs~