The original post ran out of characters. So I'll start updates here!
I'm lying beside a sleeping exhausted, sick husband and in the crib beside us are two beautiful sleeping angels.
Poor Miles and a few of our family members caught food poisoning from a bbq joint. We're thinking it was the cole slaw.
Luckily I hate Cole slaw. Unfortunately, Miles loves it and has been perfectly pitiful since right after lunch. I've been cleaning up after him and nursing him back to health.
We've all been doing well otherwise. Louie is feeling good and energetic before treatment starts Monday. His head is healing slowly but surely. We've been on the beach. Louie loves the ocean. He's his father's son. Louie loves his dada so much. And Louie is Miles' best friend.
the prognosis is really hitting Miles hard. He is not an emotional person at all, he likes to bottle his emotions up and not express them. These past few weeks, Miles has been crying openly and freely. He is terrified for his boy and mourning all the things Louie may not get to experience. We have been coping together and he is the most wonderful man I've ever met and the only person I'd be able to get through this with.
Norah is doing just splendid. She's growing and just being a girly girl. She loves being around her family and Louie.
Louie is starting his treatments Monday and we'll start physical therapy Thursday to regain more control of his muscles. He's been fighting off quite a bit of pain. We are going to get him on different pain medicine. Unfortunately, there are not many pain medicines for his age that don't make him super tired or nauseous. We're fighting it one day at a time.
Tomorrow, we're all going to church. They're taking up a prayer offering over our sweet baby boy. Right now, the lord is my solace. I have been spending time with him and talking to him. Its not always nice... I'll admit. I have questions and doubts and anger. But I reflect on our time we've had with Louie and the potential for so many more wonderful moments and adventures. Our boy is here. Our boy is fighting. He is a tough lil man and we are so blessed with him. We never thought in a million years we would be parents, the odds were against us but our Father was with us. He gave us the perfect baby boy I had written about in all my journals growing up. He gave me two perfect babies! Even if we lose Louie tomorrow, our time with him was nothing but positive. Im not worried about how he will handle being in heaven, if he were to leave us. He will be in paradise. Out of pain and in never ending freedom with the Lord. We are mourning for us. Losing our boy would be unbearable. He is my reason. We would be separated and that would be heartbreaking. But only temporary.
Our boy has quite a fight up in front of him. We're fighting everything at once it seems. But he can do it. Also I have found that talking about death, however scary it may sound, is not a bad thing. Louie might leave us. That is the truth. We can't be in denial. The more okay it is to think about, the less its the giant ass rainbow elephant in the room. We're praying for God's will, not our own. we do not know what that may be yet, and that can be scary. But we are okay.
And we are okay, friends. We are not normal. We are not how we were a month ago. But we are okay. We are taking each day as it comes and we have decided to take an adventure every day. No matter how small. We're living for our Lou.
Thank you all so much. We really do cherish you all.
I better go, poor Miles is starting to wake up. I think his fever broke.
Louie had his first round of chemotherapy yesterday. He's feeling okay. He's vomited twice, but really, what ten month old boy doesn't? He's been super tired. We're working on getting him on a new schedule that goes with when he gets his medicine. We're doing okay. Louie is weak and tired but he is happy. He is loving on us and we're just so blessed to have him here.
Miles' food poisoning got worse. He had mixed a couple beers in with the tainted cole slaw. It had dada feeling a bit rough. He got to where he couldn't hold anything, including water down. We made a trip to the ER and after an IV of fluids and some high milligram zofran, the poor guy was feeling a ton better. He's still not 100% but he's doing way better and is on the mend.
Louie's just been really chilling out this week. His head still hurts every now and then but the stitches are out and its healing well. He's sleeping right now. Louie gets so sad because of the things he can't do right now. He longs to get down and play and about broke my heart when we took him to the beach and he couldn't get in. Louie loves the ocean. Miles and I havehave been trying to keep things as normal as possible. We're really doing the best we can. The prayer offering went well and everyone blessed us so much with warm thoughts and positive vibes. Norah is doing well, she's learned to hold her head up and we're oh so proud of baby girl.
Life is good guys. It really is. Thanks for the positive comments and encouraging thoughts. We'll update when we can.
Louie is having a rough day today. He has been vomiting all day and we called his doctor. The doctor said if he hasn't stopped by tonight, to bring him in and they will change his medication. Chemo is already starting to make him really tired. He's not having fun. Miles is on his third shower with lil Louie. It seems to relieve some of the pain he's in.
I am exhausted y'all. I am trying so hard to keep things going for Louie. But I am so tired. I had a very emotional night last night which involved Miles holding me while I cried at all hours of the night. He really is the most amazing kind of man, gals. He is the man I dreamed of. I want my son to be healthy again. Everything about this situation sucks, but we're trying so hard to find positivity. Louie is with us and he is fighting. That's what I'm going on.
A lady from our old church today (you'll understand why it's our *old* church in a moment) that this cancer was a blessing and that God will use this to make us stronger.
I need to make sure everyone understands the rules of helping someone who is grieving...
DON'T EVER say that. I have been trying so desperately hard to keep my faith in God. But when I look at my scared, shaking, hurting little baby, it is so hard to be happy with God. I can't imagine a God that would cause my poor baby to be in so much pain. He might allow this to happen (thats a whole can of worms in itself) but I can't believe that God would necessarily cause this to happen and I can't imagine that he would use it as a tool to bring my family stronger. Of course, we may come out of this stronger. We pray we do. But I can't accept that he would use this as a tool. If that makes sense. Anyone who has grieved someone deeply will understand. (I hope).
Anyways, thank you all for your comments. When I say we appreciate them and that I do read every single one, I mean it. They sometimes get me through very rough moments. We are in awe of the outpouring support from the community- both locally and through the internet.
Thanks everyone. I will write a longer update tomorrow, I am too tired tonight.
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.