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

Neuro appointment

Tuesday May 15, 2013

Aaron saw Dr O (neuro) today. He was pleased with how he is doing and how alert he was this morning. He really doesn[t want him to be on so many seizure meds (he is on 5 different seizure meds) but does not want t change anything right now. He said he is doing so well that he is afraid to change anything. We had such a hard tome getting his seizures under control I am so happy that he isnt going to change them. Aaron is still having siezures but not as many as before and he recovers a little better now.  Hopefully the progression of the Lennox Gataut Syndrome will be slow.

Keagan's last day

Wednesday May 8, 2013

Today was Keagan's last day of school. He was so excited. He could hardly ait to see what his end of the year present was. He LOVED it!! They had a Spring Music Program and it was so cute. The kids sang songs and they were each given their Certificate of Completion. After the program they had cookies and punch. When we were leaving Keagan was so upset because he thought he was missing a party. He had a cookie and punch but he kept saying "I'm going to miss the party. I want to see the presents" He is so cute. I still don;t think I convinced him that there really wasn't a party. He gets to go back next year for their all day program. He is really looking forward to going to school all day like Nicholas.

Mothers Day

Sunday May 12, 2013

I am beyond blessed to be called "mommy" by these 4 precious angels!

I waited a very long time for this and I couldn't ask for anything else. I remember holding each of them for the very first time and I could not love them anymore than I do. They are my whole world. I am so thankful that Taevon is fine and Aaron is getting stronger everyday. I am trusting God more, worrying less and enjoying every minute with my boys.

zoo

We went to the zoo for the first time this season. The boys were so excited! I don't think I have ever seen them get ready so fast in the morning. The weather was perfect. Aaron loves being in his new stroller and Taevon loves being outside. Nick couldn't wait to see all of the animals and Keagan couldnt stop talking about feeding the giraffes.

surgery

Wednesday May 8, 2013

Aaron had to be at the hospital at 7:30am this morning. He was called back to pre op around 8am. They checked him and said he was good. I talked with Dr S and the anesthesiologist. They were concerned about his seizures and wanted to make sure that he had him morning meds. He fell alseep while I was holding him and looked so sweet. I hated handing him to the nurse. I kissed him and told him I loved him and he was taken to the OR.

Dr S finally (25 minutes later) came and talked with me., He said it went very well and that Aaron did great. He said they would call me back in about 5 minuted to see him. I was so relieved. I gathered up my things and waited for my pager to go off. 5, 10, 15 20 minutes later it still has not gone off. I am starting to get worried but remembered Dr S said he did fine. 26 minutes later it goes off. I am taken back to recovery. She keeps walking and we pass Aaron's wheelchair in the hall. We go out the door and across the hall. She takes me through another door and he is still hooked up to all of the monitors. He is still sleeping. The nurse says the Dr has ordered a breathing treatment and X ray. We think he aspirated. As she says this his alarms go off for heart rate and oxygen level. His heart rate his 50 and his oxygen level is going down and he is already on 10 liters. I can't think. I just remember how sick he was the last time he aspirated. They do the breathing treatment but his lung is the same. They do the chest xray...its clear.... what!?! The Drs listen to him and he is all clear! We can't believe it. They were already planning on him staying. His heart rate is still low and his oxygen level is still low but his lungs are clear! They are able to ween him down to 2 liters and he is sent to the other side of recovery to wake up more. After a little while he starts to wake up more. He begins to cough and his heart rate goes up and his oxygen level rises. He is going to be ok! I feed him to make sure that his button is working. He does great and we are finally discharged.  MIRACLE

                                                          needing lots of oxygen
                                                  

                                                         waking up and doing better

neuro with Tae

May 2, 2013

Tae had his appointment with Dr O (neurologist). He is doing great. I have not noticed any seizure activity since he has been with us. He is on a very low dose of Keppra (300 mg bid).  Dr O doesn't want to change anything but wants me to know that he is on a very low dose and he has gained some weight too. I am just going to keep watching him and hoping that his dose is enough to prevent any seizures.

Surgical appointment

Tuesday April 30, 2013

Aaron saw his surgeon, Dr S this morning. He was pleased with his site and scheduled his next procedure for Wednesday May 8th. He is going to replace his Peg tube with a BARD button and do another biopsy. We are praying that his esophagus has healed and another surgery will not be needed. I am very nervous for Aaron to be put to sleep again. It took him a very long time to wake up the last time and I don't want him to be admitted to the hospital this time. I am so thankful for his group of drs. They are the best!

                                                LOVE this! A boy and his monkey

Ist school prject

Monday April 29, 2013

Nick's first school project was due today. He worked very hard on it and was excited to take it to school. His school had them do a community project instead of the standard science fair project. The theme was Making a Difference. The things he came up with just amazed me. He has such a kind heart and so much empathy for a 7 year old. He truly wants to make the world a better place. I am so proud of him.

Dr appointment

Friday April 26, 2013

Aaron saw Dr C today. He weighs 46 pounds!! Dr C said he looks good and that his heart rate was ok. He gave him a antibiotic for a secondary skin infection on his chin from drooling. He will see him again next month. I can't believe how much weight he has gained. He looks so much better. I love his cheeks!! Since he got his Peg tube and has gained some weight he has been sleeping a little better at night.

                                                         so sweet

great news

April 24, 2013

Taevon 's Dr called and said his sodium level was much better He still has some irregular blood cells that they are going to watch. His main problem is just anemia. What a relief. He will have some more blood work in a few weeks.

1st invitation

Keagan received his first invitation to a friend's birthday party. He was beyond excited especially because it was from his best friend Alexa. He couldn't stop talking about about going. He spent forever picking out the perfect gift and finally decided on a Cat in the Hat game and some bubbles.

He had the best time playing with all of his friends at the party. He loved all of the games and the carnival theme. He won a Cat in the Hat hat and medal. I am so happy that he finally got to go to his first party. He feels like such a big boy now.