I'm filling out some school paperwork tonight. There are a lot of questions about Logan's development. It's always hard to fill these out. There are so many questions that we answer no or not applicable to. When it comes to the medications and hospitalizations section I always write...more than we can count and then provide a little bit of elaboration on what he is on medications for and what types of surgeries or hospitalizations he has had.
When questions are asked about when he talked, walked, held toys, etc. my heart breaks. Logan learned to coo and roll over in the first year of his life but after that, these skills were lost. He was able to hold his head up and put some weight on his legs at times as an infant. I have pictures of him in the baby saucer holding his head up and him on his tummy pushing up off his arms with his head up.
Over time, skills he did gain are now gone. Where are we now? Logan still loves to be cuddled. It is my favorite activity with him. I hold him and press my cheek against his and he calms and closes his eyes. He loves to be sung to. He will sit and watch whoever sings as he listens calmly to the music. He loves to watch his sister Lauren (7 years old) play. He cannot participate but when she plays where he can see her and talks to him throughout, he watches on. She reads to him and also plays make believe with him. It melts my heart to see how tender and loving she is with him. She truly shows unconditional love despite the jealousy that occurs at times!!
Back to the questionnaire, this is not the first I have ever filled out. I can't tell you how many I have filled out and often the questions are the same. I find I am getting more sarcastic in my answers with each questionnaire. I don't mean to. I think it is a form of coping with the reality we are faced with. We have a son that requires help with all daily cares. He cannot move himself, he cannot tells us what he needs, and cannot tell us what is bothering him. He can't say, "I hate this movie, why do you always put it on for me"! I really hope we aren't torturing him. We work really hard to watch his non verbal behaviors to figure out what he likes or dislikes.
As for the rest of his health, Logan is still doing really well. He still has yet to be hospitalized for an illness in three years. We are able to keep him home and weather the storm here. I still knock on wood regularly as we are so lucky to have a great staff of nurses to help manage every illness that comes Logan's way.
We saw the seizure specialist this week. We are continuing to increase his seizure medications as we have done for many months. There is still room to increase the doses based on his weight but we must watch his lab work closely to ensure there are no detrimental effects and also watch for side effects. If these most recent dose increases don't work, we have two more options of medications. Logan continues to have at least six tonic clonic, otherwise known as grand mal seizures per day. He also has many other small seizures that are less prominent and debilitating but still concerning. We still continue to work to eliminate seizures but always know that this may be a battle we chase and don't completely win. If anything, we just want them to lessen and remain short. That way Logan experiences less distress and comfort. If we can eliminate them, I would probably stand from the roof tops and sing!!!
Medical marijuana is not an option at this time. It is legalized for epilepsy in Minnesota and we would be able to have Logan certified to receive it but unfortunately the cost is just too high. We spend a large sum of money per month paying a parental fee for his medical assistance in addition to the monthly fee that comes out of my check for private insurance. The cost of medical marijuana is just too far out of reach for our budget. It is not proven that this option would work, but it would be nice if it was affordable enough for us to try it!
So for now, we continue to support Logan's comfort. He goes to preschool as much as possible. We do the best we can getting him out and about to activities. We are excited for breakfast with Santa! We are working on getting approval from our county to have some remodeling done to his room and bathroom to assist in accommodating his increasing weight! He is 52lbs and its not getting any easier to lift him these days. We are coming up on Thanksgiving and I almost feel ashamed to complain as much as I have in this post.
I am truly thankful for so many things in my life. I am healthy after recent gallbladder removal. My children are well cared for and otherwise healthy. They are thriving and teaching me new things constantly. They make me a better mother every day by teaching me patience, unconditional love, and gratitude. My career is going very well and I feel very fulfilled in what I do outside of the home so many days of the week. My husband has a great job and comes home excited to talk about the great day he had. He supports me in all I do and listens to my rants. He does a much better job than I do at keeping the house in order, disciplining and teaching our 7 year old, and keeping our family fed. This Thanksgiving holiday will be spent with friends and family enjoying all we have to be thankful for. And for Logan, we will continue to cherish each and every moment and do everything in our power to keep him comfortable and thriving. This, we are so thankful for each and every day!
Tuesday, August 11, 2015
What a great summer it has been. We are very fortunate for the wonderful summer Minnesota has given us! Logan has spent some quality time outdoors! I always wish for more but Mosquitos can be a hindrance. They really love to bite his face. Last week he had a bite under his eye and on his forehead. No big deal but he can't itch them! We are so thankful for Benadryl cream!
Well I have fun things to report and I know this is rare. Most of the time it is a depressing doctors appointment or change in symptoms. Not this time!
Last week we had some great Logan moments. I came home from work one evening and he was in bed. I went in and gave him a hug. It isn't your usual hug. I have to take his arm and wrap it around my neck. But once I do he relaxes, closes his eyes and slows his breathing. All is right with the world in those moments.
So that is what I did and then I sat with him trying to relax him for bedtime. Lately he has been a night owl because of his medication regimen . Nine pm is prime awake time! So I was in his room, did the hug/cuddle routine and said goodnight. As I pulled my arm away to leave the room he opened one eye and looked at me. I knew he was scoping me out hoping I would stay to cuddle longer. So I did and this happened about three more times until I figured him out. Finally I didn't say good night but slipped away and he stayed sound asleep!
My heart melted knowing he was aware of me being there. I felt so significant to him in that moment. It can be hard to find those connections with him at times.
Tonight is a good example. I came home from work and went straight to him to say hello. No matter what I did he just wanted to watch toy story. I have to chalk that up to being a four year old almost five year old. He isn't always going to want to be involved with me and I have to be ok with that.
Oh what a mommy bummer!!!!
Otherwise life is pretty good. His seizure status really hasn't improved. He has had a couple of big seizures in his wheelchair in the past week which is abnormal. We pray for control of them soon. He is staying healthy, knock on wood. The plan is to put him back in school but to hold him back in the class he was in last year. Three days a week with his same amazing teacher seems much more do able than a longer day with a new set up. I wish it was different but we need to understand his stamina is not what it used to be. I love spending this time of year getting him and Lauren ready for school.
She is beyond ready to start first grade. She is chomping at the bit to see her friends and be given a challenge. I have been so extremely proud of her with Logan. The other night it was me, her, and Logan. We didn't have a nurse. She jumped in and suctioned him a handful of times.
I never ask her to help with his cares. I don't want her to feel obligated. She was so sweet to jump in and help and when it was time for bed, she asked if they could have a sleepover in his bed. My heart melted again! I'm so grateful for them both. I'm the luckiest mom ever!
Thursday, July 9, 2015
Today Logan saw a new neurologist at the request of his current neurologist. He sent us there for a second opinion regarding Logan's seizures. We started the day with an EEG (test that monitors brain activity). Of course Logan didn't have any seizures during that time. Go figure! It still showed abnormalities that have been noted previously and this neurologist basically said, he has an irritable brain.
We spent a good amount of time with the doctor and his nurse. It cracked me up when she walked in with a thick stack of medical records for Logan. We joked about how much time it took them to read it all! I have to say though, I was so impressed when the doctor started talking with us, it felt as though he knew all about Logan before meeting him. It meant a lot to know they cared enough to do the leg work before our interaction. We didn't have to rehash all of his medical history.
The goal of this appointment was to see what other options we may have to get Logan's seizures under control. The first plan he made is to increase one of the medications he is already on. We are still at a lower dose and we think this one gave some positive benefit when we started it. If that doesn't work there are many more options. He may recommend we bring Logan in for an overnight stay in the hospital to monitor seizures. He thinks it would help us capture seizures on an EEG and help him better understand what to treat.
We also have many more medication options and he has a specific one in mind that he may move toward. We also discussed medical cannibus. This is now legal in the state of Minnesota and in the past week became available for people with certain conditions such as epilepsy. I have to say I was embarrassed to ask. It seems like such a controversial topic. We had a great discussion around the option and may go with it in the future. With that being said, we would continue his current regimine of meds and use the medical cannibus as an adjunct. More to come on that topic.
I left the appointment feeling hopeful that we have a renewed chance at lessening Logan's seizures and giving him a better quality of life. After most of these appointments I feel drained, defeated, and worried. Not today! We don't have a magical fix but we have a team of people that will give us a fighting chance at doing the best for Logan and that feels great!
Monday, June 22, 2015
Some of you who don't follow Logan's "Team Logan" Facebook page have missed out on periodic updates. I find it much easier for short updates and photos. Click this link to take a peak and while you are there, like his page! https://www.facebook.com/teamlogan2013
So what's going on with Logan you may ask...where do I begin? He is now 4 1/2 years old and just about 50lbs. He is a big boy! Must take after his dad. And I say that as Joel is tall .
Logan is in summer preschool for a few weeks. We are also trying to get in a few doctor appointments when we can as Joel and Lauren are home for the summer. Logan has a new swing in the backyard and has enjoyed the moderate summer days for long walks in the neighborhood and trips to the library. We have found a few new shows that he likes to watch and unfortunately one of them is sponge bob. Yuck! I refuse to let him watch it.
Where are we on the medical front...this will as usual be the bulk of my post. We are unfortunately faced with medical needs on a daily basis. Logan's biggest problem right now are seizures. They are out of control. He has seizures every day up to 30-40 times a day. Most of his seizures are generalized. They last about 30 seconds. When they occur he arches his back and his arms and legs go into a distinct posture and his eyes gaze up and over. He does a little shaking but just mostly the contorted posture. Many times he has a couple back to back and appears uncomfortable. The bad seizures happen a couple times a day. They are called tonic clinic. When people see them for the first time a lot of them cry or tear up. They are pretty upsetting to see but thankfully are short lived. I would video tape one and show it but they are just too upsetting.
We have Logan on three seizure medications and at pretty decent doses. We have added a medication called clonazepam to help aide in reducing the seizures. This medication is very sedating and makes Logan sleepy and groggy much of the day. Sleep is the time of day when we see the seizures stay at bay.
We have exhausted his neurologists ideas and have been sent for another opinion with another clinic. We see them in a couple weeks and I hope they have something for us. It is heart wrenching to see what this does to him. I'm worried at some point we won't be able to control the seizures at all. We are curious about medical marijuana as it has been approved in Minnesota. I have heard that only certain doctors will prescribe it and I don't know if anyone will do it for kids.
Other than seizures Logan continues to remain healthy. We have had to make another decrease of his feedings as he continues to gain weight too quickly! He's a little pork chop!! We had an assessment done today to do some home modifications such as a roll in shower and lift system to get Logan in a bath chair and his wheelchair. Hopefully the county will approve everything and we will be able to move forward with construction this summer. We decided to go with a less is more approach so we won't be doing anything too major.
Other than all that, we continue to move on with life. We are faced with many challenges related to Logan's medical needs including nurse shortages. It hasn't been easy to fill shifts and Joel and I have been pulling a fair amount of overnight shifts. It doesn't make life easy and some weeks we burn the candle at both ends. We think there is a light at the end of the tunnel.
It is hard to stay optimistic about Logan's condition when we see decline around every corner. He remains my calm, loving, sweet, and handsome boy but I'm not gonna lie, looking back at photos from the past break my heart as I see where he once was. For now we just do our best to enjoy summer!