It's an update

It seems like we are in the midst of being tested yet again.

Last night was the first time in two weeks that Liam had tolerated night feeds at full rate. We're finally back to his old rate of 85 mls per hour and in a few days will have to try yet again to slowly increase the feed until we get to 95mls per hour. 

This morning he woke up with a runny nose. He's also been coughing a lot requiring extra breathing treatments. But those extra treatments are what's allowing him to tolerate feeds. 

I'm suffering from migraines. For the first time in awhile my fibermyalgia seemed to be under control. Pain was minimum. Then out of nowhere the migraines started. They've been lasting up to 3 days long. Give me 1-2 days migraine free before another one strikes. As of 1:20am I've been miserably in pain. I can't function. The migraine was so bad it woke me up from a dead sleep. I was in tears. All I could do to find the slightest bit of comfort was to sit up, leaned over a pillow and rocking back and forth. Meds haven't help. Not even migraine meds. The pain has been so intense I couldn't eat. I've felt sick to my stomach and miserable all day. Wearing sunglasses inside and hanging out in the dark. Late afternoon I fell asleep for 3 blissful hours but didn't wake up much better. I was able to get son food in me as soon as I woke up but then it was back to bed. 

This is my busy week. I have far too much to do than be stuck in bed. I know God won't give me more than I can handle and I'm thankful that Justin has been home to help with the kids today so that I could attempt to get rid of this migraine. I'm also thankful that Liam is finally tollerating night feeds. 

Trying to stay positive about everything. Focusing on what I can be thankful for about the situation instead of how miserable I am and who I can blame. There's no use in blaming. Things happen that's put of our control. 

I wish I could give a better update but this is all I have in me. I can't think straight at the moment but I have faith things will get better. I pray that they will. 

Doubled up on Liam's breathing treatments. 

Was able to braid lanies hair for her this morning. 

And 3 years ago today we began our feeding tube journey. 

The Timehop Perspective

It's hard not to campare today to the past when timehop lays it all out there for you to see. As time passes you tend to forget things...or in our case, we wish we could forget things. Timehop is just another tool I use to remember how bad things used to be so that I can be greatful for what today brings. I calm it the timehop perspective because it changes your outlook. Take for instance:

This was Liam 3 years ago today. I was trying to wake him up to get his feeding in. He was still eating all by mouth here but he was eating less and less. We had already gotten the news that he was failure to thrive and would be getting a feeding tube. I was still fighting and killing myself to get these feeds in him to prove that he could thrive and that we didn't need a tube. No matter how hard I tried to wake him up he just wouldn't. The few times he did wake up he ate just a tiny amount before falling back asleep. 

Tube feeds make me so angry and frustrated, at times I want to throw his pump through a window or wanna scream because Liam refuses to eat. Looking at this picture reminded me of how hard it was to get him to eat as a baby. How he literally could not stay awake to finish 1/4th of the bottle. He slept all the time. He started loosing weight. It got scary. If it hadn't been for the feeding tube, Liam would have wasted away until one day his body wouldn't have been able to fight anymore. I'm just gonna say it how I'm thinking it, "damn am I greatful for that feeding tube". Yes. It's true. My son had survived CDH, there was no way I could have let him loose the battle just because he couldn't eat enough. 

I've met many people who look down on me because I "let" my son get a feeding tube. People who blame me, saying I didn't try hard enough. You know what I have to say to those kind of people? You obviously haven't walked in my shoes. You obviously weren't there through my alarm going off every hour so I could spent 30 minutes doing everything I could to wake Liam up to feed him. You obviously weren't there to see how I hardly ever slept because Liam's needs were bigger than mine. You didn't sit there holding your baby crying because you knew if he didn't eat it would mean very bad things. You weren't there when I begged and pleaded with the doctors to give him more time to prove he can do it. Ypu weren't there when they explained that there wasn't anymore time left and that if they didn't do it soon things would get ugly for Liam. You weren't the one that felt defeated and like a failure. Nope you weren't there so don't judge me, my family or tell me how the situation is supposed to be handled. 

My unsolicited advice to you is to think before you judge the situation.

I love my son and have always had his best interest at heart. I would never do anything that would cause him harm. I only want his quality of like to be better. He doesn't deserve to be on quarantine in fall/winter/spring. He deserves happiness and to experience life. He deserves trips to Disneyland I'll probably never be able to afford, to be able to walk through a crowded mall without getting sick, to go to the theaters and watch movies. He deserves long trips to the beach to laugh and feel the sand in his toes and eat fish and chips. 

Liam deserves to be a kid and not a patient. As each year passes, I see him getting closer and closer to this goal. It's amazing and wonderful. I may not be able to take him to Disneyland but I can shower him with my constant, unwavering love for him. 

If there's one thing I learned on this journey, it's that love is important. You must surround yourself with love and those who love you. That's what makes life special and amazing. That's a life worth living and we've got plenty of love.