My sweet Keag suffers form migraines. He is miserable when he has a migraine. I have been asked by several people how we know he isn't just trying to get out of something, or he just wants some extra attention because of all his brothers. FIRST I spend time with EACH of my boys EVERY single day. They are my world. I wanted, prayed and hoped for each one of them. My boys are happy and well adjusted. They don't tease others, bully others and have more compassion and empathy than other kids. I hold them accountable for their actions and I tell them "no".
When Keag complains of a headache he doesn't automatically say he is having a migraine. Sometimes he just asks for Tylenol and keeps playing. Sometimes he asks for Tylenol and takes a nap. Then there are times that he cries and says his head hurts "very bad" He asks for Tylenol and goes to bed for the rest of the day and sometimes most if not all of the next day. He puts his blanket over his head, wants it dark and totally quiet. He does not want the TV or music playing. Most of the time he throws up a few times. He is miserable. After a migraine he is usually tired for the next few days, they just seem to take all of his energy. That is how I know he is really having a migraine.
There are a lot of differences between headaches and migraines. There are a lot of adults that complain of migraines and are still able to read a book, watch TV, listen to Ipod, post on facebook and pin on Pinterest. I am fairly certain they aren't having migraines. Most likely just a headache of convenience. I think they are the ones wanting attention or trying to get out of doing something.
And NO I don't ask others to take care of my kids. I don't have a nursing service that comes to my home. I am able to take all 4 of my boys out by myself. I push Taevon in his wheelchair and pull Aaron in his wheelchair. (Aaron loves to go backwards!!) I take them all to Dr appointments, therapy appointments, the library and wherever else we want to go. I do all of the care for Aaron and Taevon, cook, clean and do laundry plus Nick and Keag. I am so tired of hearing people whine about what they have to do or how long its been since they got to do something fun for themselves. Being a mom is the hardest and most rewarding job I have ever had. If these people spent all of the time they post/check facebook, pin on pinterest, whine about being an adult/parent on parenting their kids they would be a lot better off. Teach your kids not to tease, not to bully and to keep their hands to themselves. Stop giving them excuses for bad behavior. ALL kids need to be held accountable for their words and actions. Some kids need extra redirection and prompts but they all need to learn how to act and how to treat others. And yes Aaron and Taevon get timeouts. They do understand. Parent your kids. Its not kids being kids its poor parenting.
I am not saying that its all rainbows and butterflies here. It is hard work. I either grocery shop at night after the boys go to bed or very early on Sat before anyone is awake. There are days that seem to go on forever, piles of laundry that never seem to end, countless trips to the Dr, therapy and extended hospital
stays, thinking up things for dinner, ironing, cleaning and disinfecting Aaron's toys. I have days where I would like to just put in a movie and go into the other room. I have days where I cry and wonder how am I going to get through this with Aaron. I have even had days where I wish I could call Dave and have him come home from work. I have days where fear and worry take over and I just cant seem to get anything done. But I do it. I do it because I chose to be a mom. I need to do it for my kids. My kids need to see that when things need to be done they get done. I don't want to teach my kids that if I don't want to do something or I think some thing is too hard that I pass off on others. I choose to be the best parent I can be. Yes I make mistakes, and yes there are things I wish I would have done differently. But I try my best everyday to teach my children how to be good people. I am so proud of the people they are becoming.
Saturday, August 30, 2014
Friday, August 29, 2014
feels like christmas
Friday August 29, 2014
I have tons of laundry everyday. I have 3 sets of bedding, a load of A and T's clothing, a dark load, white load and brights. Sometimes I even have more things of Aaron and Tae that accumulate throughout the day. With 2 in diapers and several blowouts a day I never seem to catch up.
I finally got washable bed pads in the mail.!!! I have never been more excited. It was like Christmas for me. No more washing bedding everyday, multiple times a day!! Its the little things :)
And I finally found the perfect spot for Aaron's video monitor. I taped it to the end of his bed and its in the perfect spot. I can see if he is having seizures, even the small one a lot better. I can also see when he is pulling out his feeding tube. And it lets me talk to him from wherever I am at. So if he starts having a seizure I can talk to him as I am going/running to his room.
I am so excited about these two things. I am one happy mama!!
I have tons of laundry everyday. I have 3 sets of bedding, a load of A and T's clothing, a dark load, white load and brights. Sometimes I even have more things of Aaron and Tae that accumulate throughout the day. With 2 in diapers and several blowouts a day I never seem to catch up.
I finally got washable bed pads in the mail.!!! I have never been more excited. It was like Christmas for me. No more washing bedding everyday, multiple times a day!! Its the little things :)
And I finally found the perfect spot for Aaron's video monitor. I taped it to the end of his bed and its in the perfect spot. I can see if he is having seizures, even the small one a lot better. I can also see when he is pulling out his feeding tube. And it lets me talk to him from wherever I am at. So if he starts having a seizure I can talk to him as I am going/running to his room.
I am so excited about these two things. I am one happy mama!!
Thursday, August 28, 2014
all boy
Thursday August 28, 2014
After Nick and Keagan got off the bus today they were so excited to see all of the grasshoppers in the yard. Nick touched one on the driveway and the boys got to see how high it jumped. Then they saw a praying mantis. They both squealed. It just sat on the flowers and they both got to touch it. It had been on my car earlier in the day so I was excited to see that it was on the porch when I went to get the boys this afternoon.
It is so fun doing laundry and going through their pockets. I have found all kinds of things. Mostly rocks, mulch, and a piece of something that Nick though might be snake skin :) I have found screws, pieces of plastic and metal, yarn, a shoestring??, part of a zipper and Keag once filled his pockets full of sand! I LOVE being at the bus stop after school. They both run and jump into my arms and talk over each other telling me about their day. My 4 boys make me smile everyday!
After Nick and Keagan got off the bus today they were so excited to see all of the grasshoppers in the yard. Nick touched one on the driveway and the boys got to see how high it jumped. Then they saw a praying mantis. They both squealed. It just sat on the flowers and they both got to touch it. It had been on my car earlier in the day so I was excited to see that it was on the porch when I went to get the boys this afternoon.
It is so fun doing laundry and going through their pockets. I have found all kinds of things. Mostly rocks, mulch, and a piece of something that Nick though might be snake skin :) I have found screws, pieces of plastic and metal, yarn, a shoestring??, part of a zipper and Keag once filled his pockets full of sand! I LOVE being at the bus stop after school. They both run and jump into my arms and talk over each other telling me about their day. My 4 boys make me smile everyday!
trip to the dr
Thursday August 28, 2014
Aaron still isn't tolerating Onfi. He is very lethargic and just wants to sleep. This morning he was very sleepy and crying. His body temp kept going up and down and his cheeks were very flushed. He started having little seizures and holding his breath. His fingernails and toenails turned purple We went and saw Dr C this morning He checked his ears, chest, heart and throat. Everything checked out ok and he thinks it is just the Onfi. I am supposed to call the Neuro tomorrow to let her know if he has improved. Since he is actually doing worse she will most likely decrease it again. I can't remember how long it took him to recover form this med but Dr C thinks it took some time. I hate seeing him not feeling well.
Even though it has been difficult managing all of his medical needs there is always another child sicker than Aaron. Seeing Aaron sick and all of the other kids at the clinic or hospital puts everything in perspective. Nothing matters but spending time with my family. Hopefully he will bounce back soon because I miss his sweet giggle.
Aaron still isn't tolerating Onfi. He is very lethargic and just wants to sleep. This morning he was very sleepy and crying. His body temp kept going up and down and his cheeks were very flushed. He started having little seizures and holding his breath. His fingernails and toenails turned purple We went and saw Dr C this morning He checked his ears, chest, heart and throat. Everything checked out ok and he thinks it is just the Onfi. I am supposed to call the Neuro tomorrow to let her know if he has improved. Since he is actually doing worse she will most likely decrease it again. I can't remember how long it took him to recover form this med but Dr C thinks it took some time. I hate seeing him not feeling well.
Even though it has been difficult managing all of his medical needs there is always another child sicker than Aaron. Seeing Aaron sick and all of the other kids at the clinic or hospital puts everything in perspective. Nothing matters but spending time with my family. Hopefully he will bounce back soon because I miss his sweet giggle.
Tuesday, August 26, 2014
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!!
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!!
Monday, August 25, 2014
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.
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.
Thursday, August 21, 2014
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!
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!
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