Roll with the punches

It's hard when you see Greyson every day to notice the differences. You see the changes in him slowly over time, so they don't seem as dramatic. But looking back at old videos and photos.. you can really see how much he has lost over the past year.

This time last year is when we started to get a little concerned with his development. He had hit every other baby milestone up until now. Greyson's birthday is right around the corner and he still wasn't crawling, he wouldn't put weight on his legs without assistance, he never pulled up on furniture, and he still needed a help sitting up on his own. He was wobbly and couldn't really "catch" himself. He used to rollover from his back to his tummy the minute you laid him on his back. He loved being on his tummy. But that had really stopped too. I remember thinking there was nothing wrong, he's just taking his time learning. He did things on his own terms and his own timeline. He was 7 weeks premature, so he deserved a little wiggle room! I would get a little defensive and protective if someone made a comment about what the skills he wasn't doing yet. I remember desperately thinking he's fine- he will be fine. He just needs more time and to work more with us at home. He will get there.

I think with this diagnosis the first thing Adam and I thought was everything we were losing with Grey. We would never see those first steps. We would never have him cruising around our living room. We had no need for the baby gates we had in the basement. I had previously purchased baby proofing things like outlet covers and table corner covers.. that would just sit in a bin in our basement. We would never get to take him to the park and watch him run around, have friends over from school. The things you look forward to when you find out you're pregnant. Now, we have started transitioning him to more tube feeds then bottle feeds. He is slowly losing the ability to swallow. After our first hospital trip to Madison in early March, before we even had a diagnosis, we had a swallow study done. It showed Greyson was not timing his suck, breathe, swallow anymore. He would get too much at once and would breathe and swallow, which causes the liquid to go "down the wrong pipe". He would cough and we would take a break, not thinking much of it. The swallow study showed us that his swallowing was allowing these tiny micro-aspirations to go down the wrong pipe- into his windpipe. They were concerned because if enough liquid gets down the windpipe (which is the trachea) that liquid leads into your lungs. At the time we were in the hospital it wasn't bad yet so they showed us how to thicken his bottles to help him to be able to control the timing of his swallowing. We had to feed him on his side so that the liquid would pool in his cheek and he could take his time getting it out of the bottle and then swallow.

The funny thing is, I remember being in the hospital thinking how overwhelming it was. We now had special bottles for Grey (pediasure + a lower calorie nestle complete) We couldn't just give Grey a bottle of formula. breast milk, or cows milk anymore. No more little food pouches or gerber meals. We had to use thickener ratio and let it sit to thicken.. he could only eat for 30 minutes. If he took longer he would be using more energy and calories then he would be getting from the bottle. We would have to make sure the consistency of the bottle was the correct thickness. Things have only gotten more complicated since then, but with anything, the more you do it, the more routine it becomes.

Up until this week, Grey was taking most of his meals by mouth. We started giving him a tube feed in the morning around 8am because Grey sleeps in until 12pm or later most days. He's so tired these days with the seizure meds that we wanted to make sure he was getting enough nutrients. We hook him up after his medications in the 8am and give him a feed while he sleeps in his bed. When he wakes up we were giving him a bottle (around 1pm or so), and then another bottle around 5pm, and then one before bed around 8pm. Yesterday Grey was tired during the day and being tired and feeding is not a good combination. When Grey is tired he seems to have a harder time with swallowing safely. He coughs and chokes on the bottle so we don't push it. It's not worth the risk of him aspirating on it. We have the gtube so we just use the gtube to get him fed. So, yesterday was the first day Greyson had more tube feeds then mouth feeds. The time is coming for us to switch him to all tube feeds. Adam and I both knew this day was coming, we both knew it was a when, not an if. But it doesn't make the fact that it's here any easier. It's just the next thing. It's just another thing tay-sachs has taken from our boy.

The other thing we've been dealing with is issues with insurance. We are *STILL* trying to get palliative care and hospice care set up for Greyson. At first he "didn't qualify" because he had no need for it. Our pediatrician thought once we had the gtube surgery he would then "qualify" because he would have a medical need. We reached out to a few local companies right after we got our diagnosis and most of them said they don't work with pediatrics. Like honestly? Do you think we want this service? Do you think any family with a terminally ill child WANTS this service? It feels like every turn since this diagnosis has us running into brick walls. Every thing has been a fight. Every single thing. I know it's not always the provider, I know it's insurance and our health care system.. but my goodness. I want to scream and just lose it every time someone tells us "no" or "You need to speak to someone else" or "we don't do that". Like just help us. We need help and we need help now. Our time is limited and Grey deserves to have whatever would help keep him comfortable. Period. Every kid with a terminal diagnosis deserves whatever they need to keep them safe and comfortable. PERIOD.

This is my current view right now though. I have the day off today and I honestly couldn't think of a better way to spend it.

This is from Sunday. I was working on cleaning the house. Grey has had a stuffy nose and I wanted to make sure his room was clean. I dusted the house, cleaned the bathrooms, vacuumed, and cleaned the kitchen. While I was cleaning, Adam took Grey on a walk so that I could clean without being too loud for Grey.

The minute Grey got outside- he got SO excited to be outside and feel the breeze.

This was the other night :) he was telling Mama stories!

This is the way we can tell when he's hungry. He does this fishy-lipping sign saying "get me a bottle please!" But this was after he finished an 9oz bottle.

This was later that night. Adam and I were having dinner and Grey was falling asleep. He was telling us stories until I took the phone out! Little stink always knows when I'm recording him!

Today we are taking Greyson to a local CP center that has a heated therapy pool. Since our physical therapist thought we would have a hard time doing a weekly visit with insurance coverage. I reached out to the CP center and asked if we could sign up for weekly Mom and Dad visits. Grey loves the pool and I want him to have pool therapy.. another thing he should be able to do because he loves it and it's good for him. But insurance may not cover it and our PT doesn't want us to get charged out of pocket for it.. but I honestly wanted to cry when she told us we weren't doing weekly visits anymore. So instead of fighting with her/insurance company, we will just do it ourselves. It will be good for us too. I love being in the water too and then we can have some Mama/Grey fun time!

Next week we are planning Greyson's 2nd birthday party. How is my baby boy 2? We are thinking of doing Two Infinity and Beyond! for his theme. It was between that one and Two Legit. Adam chose the first so we are thinking of going with that one.

I am going to go get Grey ready for the pool and will try to post again this week!

xoxo,

Kim