Today has been so crazy it feels like a Monday. Jax OT came this morning, then after I got Carter and Jax and myself ready for the day, I had to take Carter to school. Then I had 1 hour to go three places. Yikes, so yes I was running like a madman. I was on my way home when Jax preschool teacher called and said "Are you home? I'm at your house." So I didn't do to bad. Then after she left I had to go pick up the boys from school and get started with dinner.
Whew, done.
I'm going in on Thursday to see the surgeon about Jax g-tube. Ever since they redid his nissen in Febuary, it hasn't been working right. We've changed sizes around, and it will work good for a few days, and then it will leak all over his clothes. Plus, the last three mickey buttons we had only lasted a week before the balloon leaked. My insurance only pays for 4 buttons a year, we are on number 4 and its only March. I don't think I should have to pay for a button that lasted a week, it sounds like faulty buttons to me. Hopefully we can figure something out Thursday.
Jax OT hasn't seen him for a couple of months because every time she schedules he goes into the hospital. Today she asked me if he was on prednisone because of his fat little face. Nope, its the SVC syndrome. These pics are from today, its hard to see, but he definitly has rounder cheeks and a double chin. but his legs are still skinny, chicken legs. I haven't heard anything yet about what the plan is. I'm anxiously waiting.
I have a couple of Blankies that I'm waiting for pics on. I will let you know when I post them on the blankie blog.
Your son is ADORABLE!!!! What a precious little miracle!! How do I get his little "Jaxson's Blankies For Babes" button for my page??
ReplyDeleteTake care!!
Alyson [mom to Evan and Avery -(severe PPHN)]
WOW, you are one busy MOMMA!! You are SO ready for your vacation;)
ReplyDeleteThere's no way that you should pay for those Mickey's. Def sounds like they're not made correctly. SHEESH, the thing's that I get to look forward too..yiaks! But, hey, they ARE so worth it;)
Jax looks so cute with the cheakers! I hope that the med's make the swelling go down, even though he's SUPER CUTE. Thanks for posting the photos all of the time...I've been SUCH a slacker lately with mine!
{{HUGS!}}
Wow, I totally know the feeling! I'm STILL waiting on the new button for V (the 1.0) to see if it helps his leakage problem. I'm hoping that's all it is. The 1.2 is a decent fit but I can still fit 3 split gauze under it. V is on medicaid here in Florida since his care became too expensive thru the private insurance, and they cover 1 button every month. We're luckier than I knew. The trick here is that alot of the DME's around here don't provide them anymore(reimbursement issues). Luckily we are with the one company in central Florida that still does. How can they refuse to provide somthing so essential?? It's crazy. Too bad our boys don't use the same Fr. size or I'd mail you one.. lol. No, really :)
ReplyDeletep.s. We had to start V back on a small dose of zantac to keep his stomach acid from eating thru the silicone balloons.
Hi I just wanted you to know that I have added Jaxson's button to my blog. He is so stickin cute and you are amazing all the things you are doing!! I love reading how he is doin and I hope things go better for you both!! We live here in Utah and have a son with Spina bifida and times can be challenging to say the least but yet there just is so many ways he has blessed our life!! I can't imagine it any other way!! We pray for little Jaxson! You inspire me by all your hard work!
ReplyDeleteJaxson you are just so cute.
ReplyDeleteWow you guys are busy, I bet you are looking forward to vacation time.
What size button does Jaxson use? I have one or two around here that are too small for Junior.
Jaxson's shirt says it all, "My mom rules!" Great job Momma, making it all happen for your family! I'm tired out just reading about your day!
ReplyDeleteI love Jaxson's hair! I wish that I could get Gavin's hair to look like his. When I put his up into a mohawk it just looks like he's a crazy man! I think it's because he has a lot of it and it's thick and grows like crazy!! He's had at least 15 haircuts since he was born! Does Jax's hair grow fast too?
Hope you have a great day! :)
Addy is going to get a new Mickey today. Her old one was removed in December and they gave her a Bard. We hate it so back to the Mickey I hope it stays!
ReplyDeleteBummer Lacey the ones I have are 14fr 1.5
ReplyDeleteHe certainly is a fighter...and a cute one at that! I hope you get the buttons figured out, that must be frustrating!
ReplyDeleteMalachi got his blankie!! He loves it!!! We were out of town the last 2 days so i havent gotten a chance for a picture. I am working on it!!
ReplyDeleteHey Lacey, just saw your comment about Addy's bard button. It wasn't surgically placed and it layed flat against her skin. It didn't have a tube sticking out. Her original one from Minnesota did and it was horrible!
ReplyDeleteHope all goes well tomorrow. I agree you shouldn't have to pay for something that is intended to last a lot longer. He looks so adorable with those chubby cheeks :-)
ReplyDelete