Hanging on by a thread

As usual, it's been a crazy few days.  Nana and I decided today that we just need a push over the edge....that has to be better than simply trying to hang on!  HA!

So it's not really that bad, but today was pretty trying. Let's start with Sunday though.

After such a rough afternoon for Logan on Saturday, we decided that he and I would stay home on Sunday, but Fred and Freddie would head to church. They had a great time and were even able to enjoy lunch and the afternoon with Ga Ga!

 Logan and I hung around the house, but he fussed most of the day. Fred and I actually had a date night planned - technically a NC Pest Management Association dinner followed by a board meeting for Fred on Monday - but a date night for us nonetheless. Nana and Papa agreed to keep the boys overnight and Fred and I would stay uptown. We had planned to leave around 3pm to head uptown, but as usual we were much later than that. I think we finally left around 4:30pm. We also decided that I would take Nana's car so they would have our car with both car seats in case anything happened and we needed to meet them at the hospital. It's crazy the way we plan things now, but I realized that day that this is just our lives. Not just with Logan, but at least for now it's more of a possibility that we could end up there, so it's part of the plan.

Everyone did great Sunday night!  Fred and I had a wonderful time and the boys did just fine. Some time during the middle of the night Freddie found Papa in the bed Fred usually sleeps in and crawled in. He rolled over and said "Daddy, is that you?"  Papa said, "No, it's Papa" and Freddie said, "Okay" and went back to sleep. So cute!  Nana slept with Logan with one eye and one ear open all night, but everyone basically slept. Fred and I tried to pack in all we could during our night out....we rode a mechanical bull, bowled and played pool.  It was great!  One night of all of that was certainly enough, but such a fun time.

Monday morning came and I headed home to get our day started, although everyone in our house had probably been up for at least an hour or so. We got Logan's meds in and Freddie fed and then met with a nurse candidate. Suffice it to say, the Lord is at work....big time! I'm going to try and explain the nurse connection, but I may lose you on this one.

Fred met a lady a week or so ago who made a huge impact on him. She has a son who has been battling seizures for years and they can't figure out what is going on with him. They have been through much of what we have and Fred found so much comfort in talking with her. As with everyone that God puts us in contact with, she was what we needed when we needed it. Well, come to find out she mentioned to Fred that they had been through a few nurses but they had one now that they loved.....long story short, that was the nurse that we met on Monday morning. I think this might be a really good fit, but we are meeting with another one tomorrow too, so we'll see how that goes. Still, the connection is amazing to me!

While the nurse was here, Logan woke up with a seizure. We didn't think it was going to be bad, but sure enough the crying started and didn't stop for some time. Once he got past that one he was able to sleep for a little while, but woke up again with a seizure. It is just after lunchtime now and a gorgeous day outside. I head outside with Freddie while Nana tries to get Logan settled down. During all of this we are talking with our Realtor (who is our sweet friend Sue) to try and get together to sign the paperwork for the house sale.

We realize after about an hour or so that this one is really, really rough on Logan. The seizure is over, but his face, arms and legs still continue to twitch. Every time they twitch he screams like he is in terrible pain. I try his neurologist's office (who I've already talked to once), but their phones are down and I can't get in touch with anyone. There haven't really been many times, if any, that I have been somewhat afraid, but this seems like one of the worst ones so far.  It feels like he is having one long seizure. The medicine we have to give to stop a prolonged seizure will stop this, but it will also put him to sleep. I've never even considered using it until now, but I send Fred a message and tell him I'm considering it....it's that bad. The flip side though, I don't really want to use it because my understanding is that it really should be used when he is not breathing or actually having one prolonged seizure. Because he is crying and tracking and basically alert, I don't think I should use it. So our options?  I call Fred and Ashley (our pediatrician) and we decide to take him to the ER. He's still struggling. But Fred is not home and we hate to take Freddie because he should be enjoying his day! So our sweet friend Lindsey comes over to hang out with Freddie until Fred can get home and Nana gets her stuff ready to go with me.

Fast forward an hour or so, Lindsey is here, Fred is home, Logan has calmed down and the drama seems to have passed. Wow. Seriously?  What do we do now? His face starts twitching again and I decide we are still taking him in.

On our way to the ER we meet Sue (our Realtor) at a gas station near 77. By the time we sign the paperwork I have decided to head to our neurologist's office (whose phones are still down!) instead of the ER so that I don't completely lose my credibility as a parent. By now, Logan appears to be the healthiest, most content baby boy.  One of the wonderful characteristics of epilepsy! UGH!  So I get to the doctor's office and wait to talk with the nurse. After about a 15 minute conversation with her we decide he needs to be seen, she will talk to the doctor and call me as soon as she can.  It is now 5pm.

She calls me to let me know there is a cancellation the next day at 3:30 and I quickly let her know we will take it.  She also tells me that both she and Dr. Nelson feel like we don't need to take him to the ER if he is fine now, but if the episode happens again, he needs to go in. At least we were doing the right thing.

So as Monday finally comes to a close Logan settles down, doesn't have any more major seizures and we all get a good night's sleep. I'm still not sure I want to face Tuesday.

Logan's PT sessions are on Tuesday at 8:30am. Now that we have switched Freddie to a preschool that is 5 minutes away (which is going really well by the way!!), I am able to take him and make it back in time for the PT session. Logan is sound asleep when I return, although he had been up earlier to get his meds. God's hand is guiding it all though and he ends up having a wonderful PT session!  YAY and thank you Debbie!

After the PT session is over, I head out to sign Freddie up for swim lessons and a basketball clinic....let's hope he's as excited as we are for those! I pick him up, head home, get everyone fed and I finally shower for the day. Logan has an appointment with a Pediatric ENT at 2pm since he continues to have ear infections. I realized when I took the neurology appointment that I was cutting it close, but I figured we would be out of the ENT appointment pretty quickly and our neurologist is often running behind.

Fred makes it home to go with us....YAY!...and we get to the ENT's office a few minutes early. I just casually ask if we will likely be out of there in about an hour and am met with a doubtful look from the man behind the counter, but he also tells me that this is the last week for appointments with Dr. Parsons (the ENT who also did Freddie's tonsil surgery and who we happen to adore) because he, himself, is going to be out for over a month due to a surgery. Fred is still in the car with Logan who was asleep when we arrived.

So I fill out the paperwork and settle in still thinking we can make both appointments. As the next couple of hours pass by - Logan has a seizure but recovers well, we finally see the doctor an hour later than our appointment time, end up cancelling our neurology appointment, find out Logan's ears are not infected but are not well.....and he is getting tubes on Monday. Can't say we were expecting that.

Again we close out the day, this time with some of Fred's award winning spaghetti! Eventually we get everyone in bed and have a decent night's sleep. Wednesday is just around the corner and I feel like we've already lived a full week.

Today....how do I even describe today? I've talked to 3 different people about Logan's surgery on Monday - which has to be at the main hospital instead of the outpatient surgery center because of his history - called to try and get an earlier appointment for his second opinion than June 2nd, checked on rental houses in the area, worked through a little hiccup in the new little house we are building, talked to the neurologist's office again and tried to figure out why Freddie was having such a frustrating day! It was just one of those days. We couldn't really get outside, I had to be on the phone a ton, poor Nana had a dentist appointment and a follow up eye appointment (which we decided to go to with her....not the best idea I've ever had) and we finished it off with dinner at the mall. Freddie was somewhat wild today which explains why he was sound asleep by 7:30.  It actually would have been earlier if we had let him.  Logan finally fell asleep after a seizure so I decided to write.

So here we are, Wednesday night. Tomorrow Freddie has school, Logan's Early Interventionist comes around 9:45, the OT is coming back to finish her assessment at 12:45 and we are meeting with the other nurse candidate at 3pm.  Hopefully the boys will have a good day which makes everything much easier!

Throughout all of this though, we have found so much comfort in the people that God continues to send our way. The lady that Fred met that I mentioned previously has been a wonderful resource and I haven't even had a chance to talk with her yet.  I also received an email from a lady in San Francisco who found me through the PMG group I'm a member of. We have a very similar story with our sons, she sounds very positive and motivated and she happens to have a PhD in neuroscience....unreal. She has a 3 year old daughter to boot and her son is only a month younger than Logan. Only God could make that connection.

Then there are wonderful people who have sent us information on the doctor we want to see at MUSC, the mom our PT put me in touch with, our dear friends Charlie and Sheila who provide more support than they will ever know, and just our friends and family in general. I can list pages of the struggles that it feels like we go through on a daily basis, but in just a few sentences it is all turned around and appears as nothing but blessings.

As I have mentioned before this blog serves as an update, an outlet and a documentation (for our boys) of the journey that we are on. I can't imagine the feelings I will have when I look back, once our life has settled down somewhat, and see all that took place in just a few short months. Less than a year ago our lives were so drastically different, but this all feels like our path. Don't get me wrong, I would do anything to change what Logan has to endure, but I still believe in the plan.  I thank God that I have God.

I'm sure there is something major going on that I'm forgetting, but that will have to wait for another time. I'm pretty sure I need to turn in so I can face tomorrow.

Sleep tight my sweet boys and sweet dreams. I love you three!