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!
