No Progress This Time

So, surgery yesterday... they were unable to make any progress. They said he is at a good point, but they need to train it. They said we can start trying to feed by mouth (which we have been with pureed baby food, oatmeal, etc.) and he couldn't be happier! Hopefully it continues to go well so we can work towards even more normalcy. Here's little man leaving the hospital, popsicle in hand!

One step closer.

My two men are off again to San Francisco. I miss them already, and they've only been gone hours. Hope the surgery goes smoothly tomorrow. Every surgery is a step closer to the 3 month mark. I just can't wait.

Brayton's birthday party yesterday went really well. The weather was cooler than predicted, but it was still fine. We had a slip & slide and water balloons, a taco bar, and a sweets table. Brayton got some really neat presents. He got an electric keyboard, bowling set, a big ball pit with tons of balls, cars and car sets, chalk, a Dora movie, a kite, clothes & more! Thank you so much to everyone who came, and also to everyone who helped out. We love you all!

Optimistic news today

Today I received a phone call from the CPS worker telling me he had closed the case weeks ago, but wanted to let me know that there are funds available to me to assist with the trips! He wants me to make a guesstimate of how much we can pay & how much we'd like the request to be for. He said there are no guarantees the requested amount will be granted but that there should be something to help no matter what. I am thinking of possibly requesting half the amount of each trip for the requested grant. That would help us tremendously.

Then, about 20 minutes ago, I get a call from pediatric surgery, and at today's meeting, Brayton was discussed. They all figure there is about 3 more months, maximum, of weekly surgeries. It could be less. I won't get my hopes up for less, but even 3 months sounds good to me. Knowing there is an end to all of this, is such a relief. I hope it all goes according to plan. At his last surgery, he was dilated to a 36 which is fantastic. She said that most kids don't need dilations after they've reached the point they've been trying to get to, but that some may need a couple annually. I will take that over weekly any day! I am excited to think my son could be done with these surgeries in the near future, and that he won't have to go through that discomfort every week.

After these calls today, I can say my day is going really well! :)

Happy Father's Day

Happy Father's Day to all the good dads out there! Hope it's a beautiful day for all of you.

Rick & Brayton are on their way to San francisco today. His dilation is tomorrow. Unfortunately, we couldn't spend the day together, but yesterday was a bright, sunny day & we spent the afternoon at the Oyster Festival, walking around in the sun, getting the kid's face painted, and enjoying the day. It was nice. Rick's birthday is in two days so I am scrambling trying to figure something out for it.

I'm a little bummed today, and wish that these trips would be over with already. It's making life really difficult. Something though that is making me excited is that Brayton's 2nd birthday party is coming up next Sunday! I hope it all turns out well, and that he has a good time.

enjoy your Father's Day everyone!

Just another dilation

Rick came home with Baby B today, and surgery was pretty straight forward. His esophagus had shrunk back down to a 24 from a 32 last week, but they got him stretched to a 34 today. I wish it would just stay put so we wouldn't have to deal with this weekly stuff. The Family House also told us today, that we unfortunately cannot stay down there for weeks at a time, like we were planning on doing to save money, wear and tear on the car, and to prevent Rick from missing work. They said since Brayton only has one surgery a week, another family could be using the other days that we are there. I understand that, but it really, really sucks. The only choice we have is to continue going down there every week. Brayton is doing great, he seems like he recovered pretty quickly today & doesn't seem as out of it as he has been recently afterwards.

I have my driving test scheduled, yay! I couldn't get in until July 20th but oh well, more time to practice I suppose!

Progress

So today's surgery went well. They told Rick today that they wanted Brayton's esophagus to reach 32-34 in their measurements. Today, it is 32! They said it was much easier to stretch and it went well. They told us there will be 2 more months of dilations to try to train his esophagus to stay open. That's the tricky part. They also said we can start trying to give his Pediasure by mouth. They switched the string on his face to a white, thicker string. I havent' seen it yet since I had to stay home this time, but hopefully it looks a little better. The string was starting to attach to his nose, and looked painful so I'm hoping they switched nostrils as well. I am so happy that they made progress, and that we have an estimated time frame for this time be over with. Of course, things can totally change, but I'll enjoy this moment for now.

I went & finally got my driver's permit today! I am so happy! I got to drive with a friend earlier, and now I'm making an appointment for the driver's test. I can't wait. No more having to depend on others!!

I didnt go today

Rick left for San Fran with Brayton. I didn't go this time since Destiny's dad is out of town, and cannot watch her, and if I take her, she will miss school, so I am staying home with her & Nikiya. I can't say I'm sad that I'm going to miss those horrible roads, and my aching butt from the 5 hours in the car though. I hope Rick does okay during the drive. He always gets REALLY tired, and it scares me. It's just me, my sister, and my 2 daughters here tonight. Girls night! Maybe we will hang out with some movies, and popcorn. :)

Brayton has had a cold that just won't go away! Yucky nose and nasty cough. I wish it'd clear up since he's much happier when he's not dealing with that. I will update with the new stats when Rick calls me after surgery tomorrow. It's set for 7:30am check in. Crossing fingers there is more progress.

Onward we go

We got home from San Francisco around 9pm last night. The surgery went well, and they went from a 16 to a 28. Finally, something! They switched nostrils with the string, and that's it. He is miserable with the string in this side for some reason, seems to irritate him more, and there is some slack behind his ear, and it's driving him crazy. They didnt send us home with any Tegaderm to tape it down with! Ugh. He sounds prety bad today also, so I left a message with his home nurse who stops by once a month to come check his oxygen levels. Hopefully, he can.

I also recently was told about a hospital in a different state who specializes in cases like Brayton's. I contacted them last night, but they were closed. I left a message, and they returned my call today. Sounds promising.

Well my baby is sleeping in my arms, sounding wheezy and extremely irritable. I will update later.