time is was just an oral medication do less sedation but this time it's through an IV. Baby Eddie is a really tough "stick" so fingers crossed that the nurse won't have trouble getting the IV. We'll have our appointment with the neurosurgeon that afternoon so we'll know tomorrow how the shunt looks. Baby Eddie's been doing great so I'm optimistic that everything will look great. We also have a neurologist appointment next week so with the surgeon taking a look at his shunt an the neurologist checking out his Chairi we'll have all out based covered for a while! We also have an appointment with Shriners on the 21st and our PT will be there with us. We also have a call into Boston Children's to check out their SB program. We do like Shriner's but we'd like to see what their urology dept. has to say too. I'm also looking into adding a private PT/OT outside of the Early Intervention program so that he has a little extra at a facility, but we'll see what Shriners has to say first. Plus, I'm planning on adding a water therapy too. I think it's going to be a lot of running around but in the end I think it's going to be worth it. We really believe the more we can do for him now while he's learning to stand/move the better it'll be. The more he can do on his own without assistance (walkers/wheelchair) the more independent he can be.
Next weekend we are getting to meet up with another family whose son has SB. We met up on a group called United by Spina Bifida on Facebook and found out we don't live far from each other. Her son is a toddler so it'll be nice to chat with someone who is a few steps ahead of me in the SB world. Plus it gives me a chance to get some frozen yogurt at out local froyo shop and if you know me you know I'll take any excuse for froyo!
Best of all thanks to a bunch of awesome babysitters and "auntie" Nikki who came off a 24hr EMT shift to then babysit with her awesome mom, Eddie and I got to go to Boston to see a Red Sox game! It was awesome! My grandfather works for the Red Sox spring training camp and in true Tito (his nickname) fashion he got us on the field and everything! After the game the two of us headed to the North End (aka little Italy) and walked around a bit and had some pizza and picked up some cannolis and cupcake. (incidentally the dogs ate that night after we got home but that's another story!)
Well that's enough for tonight since the MRI is early tomorrow and I'm beat! Ill update about the MRI later this week!
Hi there! I think I had talked to you on United By SB before Eddie was born. We go to Children's Hospital Boston, so if you have any questions about their program from the patient perspective, I'd be happy to chat. :)
ReplyDeleteI love to read your updates. It sounds like you are being the perfect advocate for Little Eddie. I am sending positive energy that there is only good news during the tests. Love, Chrissy
ReplyDeletenic had to have an MRI in july. they didn't put an IV in until they knocked him out. i was glad they let me come in the room when they gave him the anesthesia (they used general with him)... i got to hold him && even though he thrashed && tried screaming into the mask, i was glad they let me. i was kind of confused though, because i was told over the phone by pedi sedation they were going to use propofol to sedate him. nobody told me they were doing general anesthesia until i got to boston. in the recovery room, he slept for literally an hour && a half AFTER his MRI before waking up. lol. they kept saying he was going to be groggy && probably cry for a while && have off balance. maybe throw up a few times. he stood right up in the bed as soon as he woke up. then he sat in my lap && tried eating the IV off his hand lol. they made us stay for another hour && a half before they let us get him out of the johnny && into his clothes && discharged us. he wasn't sick at all && his balance was fine the rest of the day. i guess they didn't find any changes in things from the CT scan he had in the spring. but the fact that he still has the external hydrocephalus that they say is benign is kind of weird to me. i was told when they first found it on the ultrasound, that it goes away by 12 months. soooo... when is it going to go away? && why hasn't it? idk. i mean, the neurologist was okay, but i almost wish they had referred us to boston children's instead of boston medical center. BMC's pediatric neuro unit really isn't all that kid friendly. neurosurgeon was nice, but the others... meh. kind of annoying that nic's physical therapist && the GI, && the neurologist, && his pediatrician && EVERYONE keeps pushing me to get him the molding helmet. the neurosurgeon is the one that prescribes those, && HE told me that it wasn't necessary. his exact words were, "i think he's beautiful the way he is". he said it was simply cosmetic, && with nicky being as cranky and irritable as he always is, it would be a bad idea to subject him to a helmet 23 hours a day. this kid cant' even stand wearing his hood on his sweatshirt! lol. it just sucks getting mixed recommendations because the ones who disagree with what you've decided tend to make you feel like a horrible parent, like you're neglecting your child in choosing different treatment. idk. i'm sure you know what i mean. you're probably the only young person i know who can understand the stress of dealing with these types of things with a child... being in and out of doctors offices && tests && whatnot... so i totally appreciate your entire blog. nic && eddie don't have the same medical issues, but you can relate && that is so nice to find. i'm happy lil eddie is doing so good!!!
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