Louie needs a lot of prayer tonight. update 7/26
If you've been following our story, you know we've had a rough time lately. If not, there's a link somewhere, I'm mobile, sorry.
Basically, my ten month old son, Louie was diagnosed with medullablastoma last month and it's aggressive. They are fighting back equally as aggressively. We're fighting with everything we have in us and Louie is trying so hard.
My dear friends, Louie's levels are dropping. He has an infection we know about and have been fighting. His oxygen levels are dangerously low. He has been running a fever of 104.2 with Tylenol. They're afraid the infection is fighting faster than the antibiotics.
I'm shaking as I write this. We're terribly afraid of losing our boy. We are praying and hoping that he stays with us. They are telling us it's a 50/50 chance. Our worst fear is him going septic from an infection. His little body is very weak and his immune system is dangerously low after some very intense radiation. Please be praying for us. We will update later.
Louie is not doing well, friends. He's on oxygen around the clock and is getting his nutrients through a tube. He's exhausted and uncomfortable. We are trying everything we know to help him. His temperature is lower, and its staying at 102.1. He has been vomiting pain medication all day. His tummy is swollen and tender to the touch. I held him and read to him all morning. Tonight, after returning from visiting with Norah, (my daughter) I walked in to a sweet Louie in nothing but a diaper and his tubes, in his daddy's lap with his hand on daddy's cheek. Daddy was singing to him. He is still there. He is still fighting. He's still our boy. We are fighting until the end for him. Thanks for the prayers. I'll update tomorrow.
Louie is sleeping peacefully for the first time in weeks. He isn't vomiting anymore. He's breathing better and his strength is slowly returning. He doesn't want to get out of bed much. He can't support his weight and he's weak and uncomfortable. Miles and I have been holding him during his feeds and miles is often the only thing that makes him feel better when he sings to him. Norah came to visit him today and he do wanted her in his lap. They are my reason for existing. I love them more than life itself. I'll update in the morning, its been a long day. Our family has a lot of decisions to make and choices to decide on. Please be in prayer that the right ones are shown to us.
Sorry for not updating. Miles made me take a much needed break. We left our phones at home and took the kids to his family's beach house for the week. We asked Louie's doctor beforehand and the doctor said what Louie needs most now is to have healthy, happy parents. We have been running ourselves ragged and he saw it all over our faces. He said Louie needs to be around people who love him and gave us the okay.
We had such a wonderful time. Miles and his brothers went out for a night and I had to go pick them up at 2 am. Which was not a problem, but when we got to the car the next day, all four tires were slashed. Ugh! People make me sick sometimes.
We got the tire situation fixed and our insurance company was very kind to us. Louie and Norah visited the beach with Miles' mom and dad who graciously took all the grand kids so us mommies and daddies could take a break. We all had date night and it was very needed. We're taking it one day at a time. We're learning as we go. Louie is doing better. He's not been running a fever and he's holding his food!!! This is huge! He is feeling better every say and we're seeing our energetic baby return slowly. He's scheduled for an MRI in two weeks. Prayers for good results!
That's about all I got. Im so tired from driving and babies. Studying up with some summer reading. Hopefully I'll be returning to school in August to finish my teaching degree! I start student teaching for a pre k class room in December! So excited.
Thanks everyone for wondering about our boy. He's one very loves child. We're blessed.
I am so sorry for the lack of updates everyone. It has truly been a roller coaster of a month. Louie is doing awesome, but that's not to say there wasn't struggle. He is doing chemo every other week. They're trying to spread the rounds out more now that the most aggressive part of the treatment is over. He's weak and tired, but he's feeling better than he was. Miles and I have made the (****very****) difficult decision to relocate to Southern California, to ensure Louie gets the best, most advanced treatment we can possibly get him. This is a decision that has been prayed and prayed over. We have cried many tears over leaving our family during this extremely difficult time, but we know in our hearts that this is what Louie needs most right now. Louie has been sleeping more regularly, and he is laughing and talking. They have him on much better anti nausea medicines and he is much more relaxed than he has been. Norah Bean is just being a roly poly baby. She is so sweet and such a joy. We are very lucky she is so mellow when we are not. Especially now that we're dealing with her brother. Again, I'm sorry about the lack of updates, but please remain understanding that I'm doing the best I can between Louie, the hospital, Norah, school, home, and updating all of you. I truly do appreciate every single one of you and all of your prayers. Thank you so much.