The new norm.. for now.

It seems like we finally get a handle on things with Grey, and then things change.

Since Grey was diagnosed we have done two EEGs to track his seizures. The sad reality of tay-sachs is that seizures are a guarantee. When Grey was first diagnosed he wasn't having any that we knew of. We met with our neurologist and did a at-home 48 hour test. Our poor kiddo had electrodes all over his sweet head and a superman bandana to cover them. The EEG showed he was having seizures, typically at night when he was sleeping. They were absent seizures so we couldn't see them happening. When you think of seizures, I think most people ( at least I did!) think of the grand mal seizure with large muscle convulsions, shaking, and tremors. It's a lot more complicated than that.

At the end of September we noticed what we thought were seizures. I sent a video to our neurologist and he agreed. Grey is now having seizures during the day and that we can see. Grey seems to focus his eyes, but on nothing particular. His muscles seem to go stiff and then his breathing gets short and shallow and very quick. They usually only last a few seconds but those few seconds feel a lot longer. I haven't noticed anything that triggers them but they seem to happen when we are holding him- getting ready for a bottle. On his side, head on our arm. They don't happen every day but it's scary when they do happen. Then came this past Friday night.

Adam did bath with Grey and I did bed time. Grey was in my arms having his bottle. I took the botle out of his mouth to give him a little break and I noticed his eyes start focusing behind my head and his little arms reached out and stayed there. I put the bottle down and started to hold him a little tighter. His breathing started doing the short, quick, and shallow.. but then it just stopped. He stopped breathing. It was like his mouth was shut tight and he couldn't get any air in. I could tell he was trying but nothing was happening. I screamed to Adam who had the monitor and he came running upstairs. By the time he got to Grey's room, the seizure was done. I was crying, pretty uncontrollably. Adam offered to take Grey and I said no. I knew I was going to need to stay and snuggle with him for awhile after that. I had to work Saturday morning, but I couldn't sleep. I went on Amazon and bought a second baby monitor so that I could have one near my head on the nightstand and Adam would have one on his.

I got maybe 3 hours of sleep Friday night. Headed to work and was just exhausted. We were pretty slow until the last part of the day, but after work we were planning on hitting the pumpkin patch with some friends. We went there and the parking lot was just jammed with cars. My anxiety of bringing Grey was bubbling over. There were so many people.. and the space is not that big. I don't like to have Grey out in big crowds. Too many people = too many germs, stares, loud noises, over stimulation. I was worried I was being over protective so I asked Adam what he thought. We both decided it was too much and we would have to go back another day. There had to be over 2,000 people there. It was insane. We ended up running to the grocery store quick to get something for dinner and headed home. I put groceries away and laid on the couch. I don't even remember falling asleep. I just woke up and was super confused where I was! Now that's a sign of a good nap!

Sunday Grey had another seizure where he stopped breathing. This time it didn't last nearly as long but it still was scary. When it happened Friday, I reached out to two other NTSAD Mom's. Julia and Sam. They both had kiddos with tay-sachs and they are my sounding board a lot of times. Julia's handsome boy, Finnegan, had seizures so she gave me ideas of how to stimulate breathing for him and what to do if those tips didn't work. Well last night was the first night with both monitors in our room. I went in Grey's room around midnight to give him his meds. His sheet was soaked from drool and he sounded so stuffed up. We got the nose frida and Adam sucked Grey's snot (one thing I truly struggle with, makes me gag every time) and I snuggled him a little more upright to help him control the secretions. It seemed to help a little. I ended up being in his room until around 1:30am. I was talking with Sam and she helped calm me down enough to try and go to sleep. She reassured me that my Mama instincts will help wake me up if he needs me. I had to wake up to give Grey his meds at 8am today. I don't work until 12 this afternoon, so I'm taking it slow this morning and figured I could do a blog. These new seizures have been hard on me and the blog helps me to just get it off my chest. I don't feel like I'm holding all of this on my own.

We bought Grey a shirt at the Zoo in Madison- look how handsome :) The middle picture was jammie day at the Rudness house. We all stayed in our jammies and Grey took a nap in his ppod chair. He loves that chair! I'm so glad we requested it. It's been such a life saver.

We also put out our Halloween decorations a few week ago when Auntie Courtney came to visit. She was very unimpressed by our lighting options and ordered us some new lights and blow ups for our yard. Adam loves Halloween so I let him take over the decorating. I do Christmas :) My favorite blow up is the grumpy ghost. I love how grumpy he looks- makes me laugh! We also added a string of lights over the garage that are purple bats.

The past week was a rollercoaster of emotion. We have some really exciting things on the horizon but then Grey's seizures have brought me back down. I feel drained the past few days between everything going on, plus trying to get the house clean/laundry/etc. Here is to hoping this week is a little calmer and less stressful.

xoxo,

Kim