med changes

Tuesday August 26, 2014

I increased Aaron's Vimpat last night and he slept until 3:15 am!!!! He woke up in a good mood and was very vocal. I decreased his morning dose of Onfi by 5 mg. I am hoping that this makes a difference. In the past increasing his Vimpat has decreased his seizures. Onfi is the drug of choice for Lennox Gastaut and I wish he could tolerate it better. With all of his other medical issues it is hard to find meds he can take that don't interfere with other meds or exacerbate his other conditions. His Neuro would really like for him to be on the Ketogenic diet, but he is often hypoglycemic. There are other seizure meds but because he easily becomes acidic we are limited it what can be used.

He slept for about 3 hours this afternoon but was really not himself after his nap. His arms and legs are moving all the time and he is really drooling today. I think the Vimpat makes him feel dizzy. He seems better when he is lying down flat. Poor kid cant be like that because of his reflux and aspirating. I hope these med adjustments work soon. Even when he is feeling awful he smiles for me and it melts my heart!! I LOVE this sweet boy!!

Aaron

Monday August 25, 2014

Aaron saw Dr C this morning. We talked about his heart rate which is lower than last visit and the fact that is temp has been very low (in the low 95's)  We believe  (hope) it is due to the increase in his seizure med Onfi. He has a very hard time tolerating this med and ended up in the hospital last time. I called his Neuro and we are going to start to decrease his Onfi and see if some or all of his symptoms go away. She also increased his Vimpat.  Right now he is lethargic, cold (95.1 degrees) having seizures, having trouble holding his head up and and slumps to the side when sitting in is chair. I miss his giggles, hugs and kisses. I am praying that his med adjustments helps and he goes back to his happy self. I am so thankful for the amazing Drs taking care of my little boy.

trip to Riley Hospital

Thursday August 21 2014

Keagan had his Neuro appointment at Riley today.  Dr T was so nice and Keagan did so well following her directions. After looking at all his records and examining him she thinks he is just having migraines. She increased the med he is on for the next 2 weeks. We are to call and let her know how he is doing. If there is still no improvement than he will switch to another med. Thankfully she said his other symptoms do not appear to be neurological. She did say that he has low muscle tone in his core and that if he continues to fall and trip he will need PT. Hopefully getting him outside and riding his bike and skating will help. I will do whatever I need to to do for Keag, but I am praying that he will not need therapy. It will break his heart. He already sees himself as different. He complains that he is not as fast as other kids, that he falls a lot, and that he forget things. He will not want to do therapy like Taevon and Aaron. Not that he sees anything wrong with Aaron and Tae, just that it would be one more thing that makes him different from Nicholas and his friends. My sweet Keag is so cute and the sweetest little boy. LOVE him!

1st week of school

Friday August 15, 2014

We made it through our first week of school. I have missed them during the day but love to hear about their day at school. They both LOVE school and their teachers. Nick is very excited about science and social studies this year and Keagan loves riding the bus. He keeps telling me how fast the bus goes and he feels like he is on a ride. (too cute although I would rather not think about the bus going so fast :) They both run off the bus and jump into may arms after school and are so excited to tell me about their day. They have done great with our new routine and are excited to cross off their jobs as they complete them in the morning. It is so cute to see them making their beds in the morning. I am excited to see what all they will learn this year.

I am enjoying the time with Aaron and Taevon working on their goals. Taevon is doing great. He is helping with getting dressed and undressed. He is doing so well with his shirt. He is also reaching his right hand up when he wants picked up and held. He is still not interested in putting objects inside but does well taking them out. He is also now pulling pegs out of the peg board. We are still working on him handing them to me instead of throwing them on the ground :)

Aaron is still sleeping a lot during the day. He has picked up making animal noises quickly. He is also saying Tae Tae and Ni for Nick. I can't believe how far he has come with his verbal skills in the last few months. I LOVE being able to home school these little angels. They are doing so well, much better than when they went to school.

more seizures

Thursday August 14, 2014

Aaron's seizures have started to increase again. They are more often and longer in duration. He is sleeping for longer periods of time. We need to increase his Onfi again. He is now taking a full tablet at night and a half a tab in the morning. He will do this for a week then take a full tab at night and in the morning. I am hoping that he will be able to tolerate this med this time. Last time on this med he was in the hospital for a week and had a low heart rate and body temp. He wouldn't eat or drink and was very lethargic. Today he has slept a lot and not been himself. I am hoping that he is just tired from all of the seizures he had during the night. I miss my smiles and his sweet giggle.

1st day of school

Wednesday August 13, 2014

Today was the first day of school. I can't believe that Nicholas is a 3rd grader and Keagan is in Kindergarten. Aaron and Taevon started :"mommy school" today where they are SAFE and LOVED! Time is going so fast but I am enjoying every moment with all 4 of my boys.

The boys were so excited for school that they were up at 6am ready to go. I made them waffles and eggs for breakfast and Keagan ate so fast! (usually he takes forever to eat). It was so sad to see them get on the bus this morning but they were SO excited. I can't wait to see them after school!!!

The boys were so excited to tell me about their day. They both ran off the bus and jumped into my arms!! I LOVE my boys. Nick's favorite part was math and finding out they are learning more science and social studies this year. He was also very excited to sit on the bleachers during HH. He did however mention that he disliked all of the reviewing they had to do today. He asked why if he already learned it does he need to listen to them explain it again. Poor kid. Hopefully it will get better next week. Keag's favorite was riding the bus. He said "mom the bus goes really fast, I feel like I am on a ride" Too cute..  I can't wait to see all that they will learn this year. I am so proud of them.  Aaron and Taevon had a great day. Taevon had PT and he loved being in the pool. Aaron has been making animal noises all day. I LOVE being able to stay home and spend all my time with all 4 of my sweet little boys.

end of summer

Tuesday August 12, 2014

I am so sad to see the summer end. I LOVED spending everyday with my boys. We did lots of fun things and had a great time. They got to play in the rain today and they had the best time.

They are very excited for their first day tomorrow. Keagan can't wait to ride the bus in the morning. I am going to miss them but will have my hands full with Aaron and Taevon. Aaron is working on animal noises and so far he does a cow, snake, owl and now a duck. Its the cutest!!! Taevon and I are working on crossing the midline and helping with putting his shirt on and taking it off. He is doing great. I am looking forward to getting back on a routine but wish we had a few more weeks of summer vacation.