Last day of school

Friday May 31, 2013

Today was Nick's last day of school!! I can't believe that he is going to be in the 2nd grade. He is growing up so fast. I love being able to stay home with the boys!! He was very excited for Field Day today and of course for his end of the year present.

Tae's last day

Wednesday May 29, 2013

Today was Tae's last day of school!! What a relief to be done with that school. No more talking with therapists explaining what I do with the boys at home so they can implement it at school.( I thought it was supposed to be the other way around.)  No more worrying if they are being taken care of and no more injuries!! I can't wait to homeschool the boys. They are going to learn so many new things. He is already more aware of his mouth since starting outpatient therapy. I can't wait to see all that he will accomplish next year. I  know they are going to enjoy all of the extra time we will be spending together. He looked so cute in his outfit today. I love his smile!! Looking forward to summer vacation!

that sound

That sound that instantly wakes me from my sleep. That sound that makes me cold and want to run in the opposite direction. That sound that makes a million thoughts swirl in my head...is he blue? will he stop breathing... again? Will I need to call 911... again? Will this be the time his body stops fighting? I'm shaking, my stomach hurts I think I am going to be sick. I get to his bed and he is having a seizure. I pick him up and talk to him. It stops and his body relaxes. He snuggles in to me and he is ok. I hold him for awhile thanking God for more time with my precious little angel and wonder when will the next time be. I pray that he will sleep peacefully the rest of the night. He needs his sleep. When he is tired he has even more seizures. He was doing so well. Is it starting all over again? I hate the feeling I have when he is quiet in the morning. When I wake before he does. All of those questions in my head. I look at him praying he is not blue, praying that I see him breathing. Praying for more time

Taevon's 6 year check up

Wednesday May 22, 2013

I can't believe that Taevon is going to be 6 years old in a month. He has been with us for almost a year and he is doing so well. He went to see Dr C today for his yearly check up. I just LOVE Dr  C. He is such a great Dr and has done so much for Aaron.  Taevon was all smiles this morning and loved all of the attention. His blood pressure was good so Dr C isn't going to change his Amlodipine. He will recheck it in 3 months. He said everything looks great and he isn't going to change anything. Taevon is huge!! He is 59 pounds and is 46.5 inches. He is going to keep an eye on his weight to see if his Pediasure needs to be decreased more. His next appointment is August 19th.  I love this little boy and his smile melts my heart. I feel so lucky to be his mom.

Carnival

Sunday May 19, 2013

Nick's school had their carnival at Paige's Crossing again this year. The boys were so excited to go back. Keagan couldn't stop talking about the 'frog ride" and Nicholas was hoping the huge inflatable slide was there. They had so much fun. First they played a game of miniature golf.  They both did really well although Keagan couldn't decide if he was right or left handed!

After mini golf they wanted to go to the arcade to win some tickets.  They won enough tickets to each buy a foam gun and Keag bought a  snake that Nick already had from school.

 The boys couldn't wait to get to the games. They spent ALL of their tickets on the huge inflatable slide and maze. (they had 25) They had so much fun and I loved hearing their squeals every time they went down the slide.

Keagan finally got to ride the frog ride and then he spotted the train roller coaster. He couldn't walk fast enough to the ride. He squealed the whole time on the roller coaster. He keeps asking when he can ride some more.

We had a great day. It was so much fun to be out with the boys watching them run around having such a good time. I am so thankful that Aaron is doing so well and that I was able to go with the boys too. I am looking forward to summer vacation!!

post op appointment

Friday May 17, 2013

Aaron saw Dr S (surgeon) this morning. Dr S was very pleased with his progress and said his biopsy showed his esophagus looking better! No plans for anymore surgery right now!! He is just going to keep watching him and and keep him on the Omeprazole. I really thought he was going to want to do another surgery. He also said his site looks very good. I can't wait to get a g-tube belt for Aaron. He keeps pulling out the connecting tube. Dr S wants to see him in 3 months!! Things are finally getting back to normal! I am so thankful for so many things, but most of all for Aaron's improved health.

Endo appointment

Thursday May 16, 2013

Aaron saw his endocrinologist Dr T today. She was very happy at how good he looked. He was sitting in his wheelchair and in a very good mood. The last time she saw him he was unable to sit up by himself and was lethargic. His labs all came back great so there were no changes with any if his meds or fluid intake. He loves going to the Dr and getting lots of attention by everyone. I am so thankful and relieved that Aaron is doing so weel. It has been very stressful these last few months.

                                             Keagan playing in the treehouse in the outpatient clinic