new G-tube

Wednesday January 23, 2013

Taevon needed his G-tube changed today. It has to be changed every 3 months. Nicholas was so excited to help and could not wait to see "the hole" He couldn't wait to help open everything. He was so cute. After we were done he was a little disappointed that he didn't get a better look in "the hole" so next time he wants to shine a flashlight into it and take a picture. He loves anything medical and science related.

                                                        
                                                   such a sweet little boy!

Aaron's video EEG

Monday January 21, 2013 - Tuesday January 22, 2013

Aaron was admitted for his 23 hour video EEG this morning. He was in a good mood then as soon as they were done attaching all of the electrodes he fell asleep. He slept for most of the afternoon. I loved snuggling with my sweet boy today. Around 3:30 he began having seizures. Some were very small others lasted longer. He slept off and on the rest of the evening. He was up around 11pm and was in a great mood. He was so loud and was ready to party. He would yell and say "dadadadada" over and over. There was another little boy in a room close to us and he would imitate Aaron. Aaron would laugh and do it again. They did this for quite awhile. It was so cute. He finally fell asleep for the night around 11:45 and slept until 4am. At 4:04 am he began making a strange noise. When I looked at him I realized he was having a seizure. I held his hand and talked to him like I always do during his seizures. This one was different. He began having tremors and holding his breath for longer periods of time. After 5 minutes it was not slowing so down so I paged the nurse. They came in and had to give him oxygen and checked his vitals. It lasted for a while longer after the nurses came in and then it finally stopped. He was exhausted. I picked him up and he fell right to sleep and slept in my arms until 9:40am. Around 10am they came in unhooked him and we were able to go home. He slept the rest of the day. I am hoping that once Dr O reviews the video and EEG he will get his meds fixed so he can get his seizures under control.

pajama day

Thursday January 17, 2013

Keagan had pajama day at school today. He was so excited to wear his pajamas to school that he couldnt go to sleep last night. He ate breakfast faster than he ever has (keag will take an hour to eat a meal he is the slowest eater) and was the first one ready this morning! I wish everyday was pajama day :)

 

 

 

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Keagan is doing so well in school. He loves his teacher and all of his friends. I am so proud of this little boy. He works so hard on all of his papers and art projects.  I love this little boy and love our afternoons together.

 

 

exhausted

I am exhausted. Aaron has been having more seizures and they are lasting longer. I am up late and up all during the night with him.We were able to get a video of one and show it to Dr O (neuro). He still wants to do the Video EEG on the 21st and is hoping to see one on video so he can see what his brain is doing. He also wants some labs done and his Keppra level checked tomorrow. Some days are good and others he is so lethargic it is hard to get him to drink. He has a feeding at 11pm and then at 3am. It takes him about 45 minutes to drink 6-8 oz at 3am and sometimes even longer. So far today has been a good day and he has been up playing and crawling all over the house. He has the cutest smile and the sweetest giggle. I really enjoy our mornings together.

 

Winter celebration

Thursday January 10, 2013

Nicholas' school had their Winter Celebration tonight. They had lots of crafts and a game to play. Nicholas was upset because he he said they said games and there was only one game to play. He is so funny! Keagan loved all of the crafts and seeing Nick's friends. Nick enjoyed seeing his friends and is looking forward to his schools carnival.

GI appointment

Friday January 11, 2013

Aaron had an appointment with Dr M this morning. He gained some weight so he is going to hold off on a feeding tube right now. He also decided against the Upper Endoscopy because there are days that Aaron will drink. He is still not eating any solid food at all but did gain some weight on Pediasure. He wants to see him again in 2 months but I am to call if he starts having more bad than good days. I am unsure how I feel about all of this.  Of course I don't want him to have surgery and I think he will pull his tube out, but the constant worry if he is getting enough calories and liquid is sometimes very overwhelming. I know I just need to pray about it and and let go. While we see how this plays out I am enjoying every moment with this special little boy.

                                                              Love his smile!!

Report cards

Nicholas brought home his report card today. He is doing great. All + except for talking  and bothering his neighbors when he completes his work. He is reading above his grade level and just completed a special math class called Geofinity. He worked on Geometery during his class' math lesson with another teacher. He loved Geometry!! He enjoys school and loves to learn new things. He would rather read or do science experiments than go outside and play.

seizures...again

Sunday January 6, 2013 - Monday January 7, 2013

Aaron has been doing great. He is more active and almost like his old self and I haven't noticed any seizures for about a week. He has a feeding at 11pm and something was not right. He was really out of it and unable to hold onto his bottle. As I looked at him I realized he was having a seizure. He would relax and then his arms and legs would shoot out and he would make a funny sound. I picked him up because normally they only last a few seconds. This went on for over a minute. He finally calmed down but was out of it for the longest time. I stressed dosed him and when he finally started to come out of it he drank some Pediasure. He was up and down for the rest of the night and still not himself.

This morning he woke up and was in a good mood. He ate some yogurt (about 2 bites) and I gave him his meds. As soon as he took his Keppra he had another seizure but this one only lasted a few seconds and he bounced back a little quicker. He was very sleepy for the rest of the day and took a long morning nap. He had another seizure right before lunch this one was a litttle longer but not as long as the one last night. He slept for the rest of the afternoon. Since he got up from his nap he has been better but still not himself. I talked with Dr O (neuro) and he is scheduled for a 23 hour EEG on January 21st. I am hoping they can find the right med combination to get these seizures under control. I hate not being able to make it all better for him.

lost tooth

Sunday January 6, 2013

Nicholas went to another birthday party today at Ultrazone. He had the best time and wants to go back to play again. He loved running around with all of his friends. He got home late and had a hard time falling alseep. He got up around 9pm because he pulled his tooth out and lost it somewhere in his bed. He looked so cute with his tooth out minus all the blood all over his face :) Once a tooth becomes loose he cant leave it alone!

thankful for moments like these

 

 

 

 

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We had a great weekend. Aaron is feeling better than he has felt in months. It makes my heart smile to see him crawling all over the place playing with his toys. He has started "talking" again and I LOVE the sound of his sweet giggle. We just relaxed all weekend and enjoyed spending time together. I am so thankful for moments like these...

Aaron

January 5, 2013

Aaron has changed so much these last few days. He has been in such a good mood and so full of smiles and giggles. He is almost back to his silly happy self. He is still not eating but has been drinking more each time. I love seeing him crawling around and playing with toys. He has found some new toys that he likes to play with now. It is so cute to see him pushing them all around the house. His favorite is still his ball but now he has been playing with his turtle, a Sesame street toy, and his big orange therapy ball. He has started "talking " again and I LOVE it!! I have missed my sweet baby with so much personality and I am so thankful that he is back! We still need to get his seizures under control and he has a 23 hour EEG scheduled this month. We also need to get his upper endoscopy done so he can get his feeding tube so he can start getting the calories that his body so desperately needs. He is so thin and his clothes are so big on him now. I love to see him feeling so much better.

 

 

dinosaurs

Saturday January 5, 2012

The boys went to Discover the Dinosaurs at the Coliseum today. They had the best tiem. at first Keagan was scared because he thought they were real. After a few minutes he calmed down and had a blast. They rode the stegasaurus and did the obstacle course. Their favorite part was the huge slide.

 

 

 

 

end of vacation

January 2, 2013

Today was the boys last day of vacation. I am not ready for them to go back to school. Nick is still not feeling very well so I am not sure if he will go back tomorrow. Keagan is very excited to go back to school and see all of his friends. I am sure as soon as Taevon sees the bus he will start smiling and bouncing around in his wheelchair. He loves getting on the bus. Aaron and I are going to hang around at home and get his 23 hour EEG scheduled and work in his gait trainer. He is so funny and has become so vocal. As soon as HE is done doing something he yells "DA" (which means done) and refuses to do anything else. He is so stubborn :) All of the boys are finally sleeping, bookbags are packed, clothes ironed and lunches started. I really am not ready for our routine to start. I have loved our lazy mornings.

            so hard to get everyone smiling and looking at the camera at the same time

                                                Aaron announced that he was done !!

     Aaron crawling away and refusing to turn around for the camera. He is so funny.

A New Year

January 1, 2013

Happy New Year!!

I am looking forward to all of the memories we will make this year. I am focusing on all of the things I am thankful for and treasuring every second I spend with my boys this year. We are planning a Disney vacation at the end of the year and are hoping to get all of Aaron's medical issues under control. He has some important appointments coming up in the next few weeks and I am praying they come up with some quick decisions. We are also looking forward to T's adoption being finalized in the next few months!! We are so happy that he is finally home.

Today we spent the day at home. Nick and Keag aren't really feeling so well and Nick stayed in bed for most of the day. Aaron was in a good mood and played with a new toy. Taevon was his usual happy sweet self until he was ready for bed.

Sweet pictures of my boys today. Poor Nick looks like he doesn't feel good. So thankful for these special little boys! I am looking forward o see all they they will accomplish this year.