answered prayers

Friday January 30, 2015

Aaron had an "off" day yesterday. He seemed to be really tired and just wasn't himself, with only a few smiles and giggles. Around 5pm I noticed he felt cool. I took his temp and it was down to 95.4. I started trying to warm him. His temp slowly started coming up and leveled off at 96.2. (anything above 96 we consider good for Aaron) I stressed dosed him and gave him all of his meds (all 8 of them) and prayed that is temp would remain above 96. I planned on calling Dr C in the morning if he did ok during the night. I checked on him later and found that his temp had dropped to 94.2. He was really lethargic and not wanting to wake up. I immediatly started trying to warm his again. I checked his temp and it was not going up. I turned up his warming vest and added more blankets, and finally it slowly raised. He was still lethargic but a little warmer. I finally got it up to 95.5 after a few hours. I checked him every hour during the night, sometimes more often and his temp stayed between 95.5 and 95.8. I packed our bags and got his favorite blanket and toys ready. I just knew that he was going to be admitted. I just kept praying that it would reslove itself and that he wouldnt need to go to the Dr or hospital around all of the germs. At 4:10 I checked him again and his temp was up to 96.8. It went up an entire degree in just 45 minutes. At 7:40 he was awake and it the best mood!! Lots of sweet giggles and smiles. His temp was 97.2!!! So far today his temp has been up and he has been back to his normal happy self. He must of had a seizure yesterday and his body just couldn't keep his temp up. They take so much out of him and his recovery time can be up to 24-36 hours. I am so thankful that we were able to avoid all of the germs at the hospital. I cherish EVERY smile and giggle with Aaron. I don't take a second or granted.

Mad Ants Basketball

Thursday January 29, 2015

The boys are both playing basketball at school with the Mad Ants. Tonight they went to a Mad Ants basketball game. They were able to play on the court, do rebounds for the players and be a part of the high five tunnel. They had so much fun. I love their school. They have so many fun activites for the kids. My boys are looking forward to the Spring enrichment classes and the upcoming carnival.

sleep study #1

Monday January 26, 2015

Keagan had his sleep study last night. He did great!! I was so worried that he would be scared. He was actually really excited. We called it his overnight adventure. We bought him a new blanket to take, and some new Skylanders pajamas. He held still and followed directions with no problems. I am so proud of my brave little boy. I am so thankful that we were able to get this done here. They will send the results to Riley and we will get the results at our next appointment in Indy.

Winterfest

Friday January 23, 2015

Keagan had his Winterfest tonight. It was so cute. They sang 3 songs and had the cutest snowman/penguin costumes. He looked adorable doing all of the motions and had the biggest smile. After they sang we went to go to different stations for some fun activities. He LOVED playing Charades and was very good at actiong out his words.  He couldn't wait to eat some cookies and milk, and of course it was our last station. We read some good books and he was so excited to have a cookie with lots of sprinkles!! It was such a fun night. I love being able to do one on one activites with each of the boys.

LOVE this sweet boy!!!!

a new vroom vroom

Wednesday January 21, 2015

Aaron met with his PT and M from NuMotion. I am so excited about the new equipment that was ordered this morning. He also got his new gait trainer today. He has been sleeping so much he has really lost a lot of his core strength. I am so excited for him to get back up on his feet. We are getting a head piece that will help keep his head from dropping forward. This will be great in the car as he has trouble holding his head up for long periods of time. It can attach to his wheelchair and carseat. He is also getting a new Vroom Vroom. He loves to be driven around the house in his stroller. He has outgrown it and we have been looking to buy a new one. M form NuMotion suggested a Tomato chair for him, and the base comes with wheels!! I was so excited that it had wheels and that it was covered by insurance. Now his stroller will last us a little whie longer. It is fine to go back and forth to all of his Dr appointments, it just just getting uncomfortable for him to sit in it for long periods of time. Now we have longer to save for the one that will last him for a long time instead of buying one that will nedd to be replaced in a year or two. So thankful for the amazing group of Drs and therapists I have working with my kids.

snow fun

The boys have had the best time playing in the snow!

another surgery

Friday January 16, 2014

Tae went to his neuro appointment today. It seems that every time we go to the Dr we come out with more referrals for other things, This is the case for us today. This was just a routine follow up that should have been a short visit. But since my kiddos dont do things the easy was we were ther for much longer. We talked about the increaase in Tae's coughing, his drooling, the new thing of him crossing his eyes and his spasticity. He is going to get Botox to help with the spasticity in March. He will have Mri to rule out hydrocephaly, and another EEG to determine what is seizure activity and what is just Tae being Tae. (so hard to figure things out since he nonverbal)  He was started on a new med to help control the drooling. If this doesnt work, since he is at a higher risk of aspiration he will have surgery to remove his mandibular salivary glands. I am hoping to get this all scheduled this month since he has surgery at Riley next month. I love this little boy!!

pulmonologist

Wednesday January 14, 2015

Aaron saw Dr Y (pulmonologist) this morning. We are concerned with his increase in reflux, coughing and choking. Dr C thinks he needs a Nissen to prevent him form aspirating again. We talked about his history of aspiration, episodes of respiratory distress the fact that he has had pneumonia numerous times and his lack of cough and gag reflux. He sent us for a chest x-ray and upper GI.  During the upper GI we could see the reflux on the monitor. My heart just sank. I knew all along that he had reflux, I ws just hoping for the best. After Dr Y sees the tests results we will decide when to schedule his surgery. I was hoping to avoid another surgery for him, but I have to do what I can to protect his airway. Again I was told that kids like my precious Aaron have a very high chance of passing away at night form aspiration. I love this little boy so much. I am so thankful to still have him here with us. God must have such a special plan for this sweet child. He has brought him through some really tough times, when all hope was lost. He has taught me that I am not in charge, God is and he will see me through everything.

game night

Friday nights

We LOVE game night. The kids look forward to it all week. CThey drink hot chocolate and get a snack of their choice. We play all sorts of board games. Keags favorite is Disney Headbands while Nick enjoys Apples to Apples. I love Jenga.

I enjoy our weekends so much and can't wait for summer vacation.

Snow days

We LOVE snow days!!!! The boys were so excited that they squealed when they found out school was canceled. We made Olaf waffles and they loved them.

We stayed inside and watched movies and played games. We were hoping for lots of snow but still excited to have them home for a few days. They loved their "snow day" surprises!!

Hoping for some more snow days in the future!!

orthodontist

Wednesday January 7, 2014

Nicholas went to the orthodontist again today. We were thinking that he was going to get started since his top teeth finally came in.  Dr T decided to wait another 6 months because a few botton teeth are stating to come in now. He has another appointment in July. I am ready to get started so he can hopefully be done before High School. Love this kid so much!!!!

end of vacation

January 4, 2015

I am so sad to see our vacation end. We have had the best time together. While we were hoping for snow we found lots of other things to keep us busy. I am going to miss having the boys home all day, but I think Tae and Aaron will be happy.  My sweet little Tae likes things quiet. He loves to sit in my lap and cuddle for most of the afternoon while Aaron sleeps. Aaron likes to watch his movies in the morning in quiet. I just love having all of the boys home together. We were getting all of the boys things ready for the morning and were already planning our Spring Break!! While the boys are back at school I will be secretly planning our Disney trip.  I am beyond excited to be going back. I can't wait to tell them, they will be so surprised.