Summertime is gone!!!

Well I was not a good blogger this summer. Just had a lot going on and with the kids home I really did not have the time to think:) We had a great summer with many memories that I will never forget!!! I am so blessed to be able to stay home and be with the kids while they are out.



The kids are glad to be back in school and love it. Bailee is in 3rd grade and Brayden is in Kindergarten!!!


Brayden is having a hard time adjusting the the long school day. They are allowing him as many breaks as he needs. He crashes in the afternoon. I hope he gets use to it! We have increased his meds. but I see no difference.



Bailee has started softball and is doing great. Brayden will play ball in the spring. This weekend we went to the zoo and had a great time. It was a nice, not to hot day:) Brayden's favorite animal is the gorillas. Bailee's was the red panda!!




Well hope you all have a great week!

SUMMERTIME is here:)

The kids are out of school, days at the pool have begun, staying up late and just living life to the fulliest:) That is what we are doing here!!




We are all doing good! Our schedule this summer is busy. Therapy, vacation, and just hanging with friends. The kids will be leaving to go to Fla. on Sunday. They are super excited! We will then be leaving in a couple of weeks to go to my Dad's in Colorado.

Brayden started swimming lessons and he is doing AWESOME!!! Check this out.....






Yep, he is swimming with not flotation, even jumping off the diving board all by himself.!! We are so proud of him:) If you know him, you know he has been VERY attached to his swim vest. He decided to "give it up" the other day!! This is a HUGE step.

Bailee is loving being able to stay up late and have friends sleepover. The girl is such a social butterfly:)





I hope all of you are enjoying your summer. I will update again soon:)

Celebrate Summer - Sun drenched days and starlit nights...

Life is so busy.....

Jimmy and I had a great week last week at the beach. We were able to reflect on our last 10 years of marriage. The good times and we even talked about the bad!! It is just reality that we all have "our times"!! A HUGE THANK YOU goes to Mom for watching the kids while we were gone.

We walked the beach everyday, ate out every night and just enjoyed every minute of our time.


We celebrated Mother's Day Sunday when we returned home. The kids had gotten me 2 beautiful hanging baskets and 2 ferns for my porch:) They were so excited to for me to see what they had also made me at school. I felt very loved:) Motherhood is a gift. It's sometimes difficult to realize how much of a gift this title of mother entails as you are breaking up sibling spats, cleaning up messes, and washing copious amount of dishes and clothes...but right there, circling around your feet, are little eyes watching your every move. Right there are miniature people looking up for guidance and direction in this big world, and God has given us the ability to instruct and help these precious children through this life. Motherhood is indeed an incredible gift...one that we should never take lightly. I LOVE being a MOMMY to my sweet Bailee and Brayden:)



This week I have been playing catch-up from being gone last week. Kids have had school events, ball games, therapy and Brayden had his neuropsy. testing for the study for Cognitive Function of Children with Oxidative Phosphorylation Disease (Mito). I will update caringbridge more on this.

Thanks for checking in on us! O hope to update again soon!

Have a great weekend♥

IT'S BEEN TOO LONG!!!!!

Well I have not been a very good blogger lately:/ This time of the year is so crazy that I have a hard time finding time to blog! So, I will go over the last month or so briefly!

Things are going good. We had a great easter:) The kids looked so cute and really enjoyed all the festivities!!






Bailee had First Communion last weekend and that went great. We are so proud of her and how much she has grown in her faith over the past 2 years.




Well this weekend has been an adventure! We ended up at CHOA Saturday night with Brayden because he got hit in the mouth with a metal bat. I heard it and saw it and it was so scary. When you hear a "POP" never a good thing! All in all he was such a trooper. he does have 2 teeth that may not make it. We will go see the dentist tomorrow to see what need to be done.






Jimmy and I leave Tuesday for Hilton Head. We are celebrating 10 years of marriage!!!!!!!! We are looking so forward to this trip. We will be home Sunday night. Thanks for checking in on us! Hope you have a great week:)

I have been so bad about updating:/ Sorry!! This little chick has been sick for about 2 weeks now:( Been trying to keep up with the kids schedule and get a little rest in there here and there!!

Kids are good. Bailee has been doing GREAT with softball. We are so proud of her. She is truly a great little athlete. Brayden has been doing well too. The past few weeks he has been extra and been taking a nap in the afternoon. I allow him to sleep for about an hour then I have to do the dreaded wake-up. Not fun!! Last week I had a follow-up and lab appt. with Brayden's Neurogenetic doctor. COQ10 levels are STILL NOT where they need to be, but they are getting there! So we were bumped up to 1800mg a day. There were several variants in his mitochondria DNA but they do not feel this is where the disease is coming from. Brayden has a nuclear gene mutation that code for mitochondrial components. Nuclear DNA has 2 copies per cell one from mother and one from mother. As technology gets better, they will be able to find just exactly where in the nuclear gene this is. Again does not change anything with Brayden. I see progress in Brayden everyday. He is such a blessing to us. We still are working with behavior counselor and this is going good.

Today I had his IEP for his transition into Kindergarten. Yes, my "baby" will be in Kindergarten next year:/ It is bitter sweet! He has made great strides this year! I look forward to many more. We are looking forward to Spring Break! We had plans to go to Fla. to visit Jimmy's parents but not sure f we will be going or not. Reason being.... Jimmy and I celebrate our 10 year anniversary this year and we are taking a trip the first week of May! I have some prayer request that I would like you to send up for me. Our little friend Abigail is having a MRI on Monday pray for guidance as she undergoes her MRI. Our neighbors little girl was dx with cancer and this family needs prayer. As always please also remember all the other children fighting "their" fight. We have a lot of very strong fighters out there. Have a great weekend!!!

HAPPY BIRTHDAY BRAYDEN!!!!!!!!!!!!!!!!!!!!!!!!! Wow:) My baby is 5 today. We have had a very busy last couple of weeks. I am sorry for the lack of updates:) I have meant to update several times but just did not! We celebrated this weekend at Chuck-E-Cheese. What fun that was!!!

My little rocker dude had a great time playing and celebrating with all his friends! Thanks for all the birthday wishes! He was so into his birthday this year it was awesome. Birthday's mean a lot to our family. It is truly a blessing to have two wonderful kids.


Bailee starts softball Saturday and this will be our life for the next couple of months! I enjoy watching her play. Brayden is not playing this year but will play again in the fall. I am also in the process of trying to get him guitar lessons!!! That is part of his birthday present!!! He is so excited!

Life is really busy right now but we do stop all the time a thank the man above for all he has given us. Both the kids continue to do great in school. Bailee loves every minute of school. Brayden, well he is ok to go and ok to be home:) I have decided to continue caringbridge but just update when there is medical news, etc. I have had some request to continue caringbridge because it is easier to access.

That is about all for now! Hope all of you are having a great week. Thanks for checking in on us!

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!!