Noah H. Update

[Guest guest]

Hi Everyone,

Just thought I'd update you on our last trip to SLC. This trip was by far the most physically, mentally and emotionally draining trip yet. It has been 4 years 4 months, 20 days and 16 trips since we first stepped foot in the hospital in SLC and.....I'm done, I'm so done, I'm totally done!!!! Let me rephrase.....I want to be done, I'm ready to be done and someday we will be totally done! For now....we will 'Just Keep Swimming'!

For the record, I'm the mom that secretly has her hopes up EVERYTIME (yep, that mom), but won't tell anyone. I'm tired of being disappointed, so if no one knows that you are disappointed then you don't have to explain.

Monday morning we started by seeing the 'new' pediatrician who had no idea who our son was, what was wrong with him or what we were even there for. For Heavens Sakes, Lady, take a min and look at the history. Next, she informed my 5 yr old that the reason they call it Idiopathic is because, no kidding, the doctors are IDIOTS and they don't know what is wrong....Really.......REALLY!!!! You just told my husband and I and our 5 yr old that our Dr is an Idiot!!! Lady, you are an idiot!! That statement is very offensive to me, as I have total faith and admiration in our doctor. He has literally been instrumental in changing the course of our sons life.

Next, we head to get molded for our next brace. To our surprise, we got a new guy, even though our appt said different. Noah got molded, ONLY. No measurement were taken, no studying the xray. They did decide to take an out of brace xray, as we haven't had an out of brace or cast xray for almost 3 years. The xray was worse then I thought, so after that, the idiot ped, and the new brace guy....I was done!! Later that day we headed back to the hosp for the brace fitting and within about 5 min, the brace was scrapped and we were sent away.

Tuesday Noah had a follow-up MRI. This is, by far, my most hated procedure. I completely lose it everytime, my husband thinks I'm crazy. Seeing your babes, lay lifeless on a bed as they hook up all of the machines up is more that I can take. What I didn't know until after the fact, was that Noahs heart rate had dropped to 37 and anything under 50 calls for concern. I was standing on the other side of Noah, holding his hand, and couldn't see the monitor. The nurse gave him additional med through his IV and the heartrate went to the high 50s. They were happy with that and proceded with the MRI. MRI went fine, it took Noah about 2 hrs to totally get it back together and onto the next hosp for the new brace fitting. The fitting took 4 hrs and we still weren't done, but it was the end of the day. We were told to have Noah sleep in it and he'd make more adjustments on it the next morning after we

saw the Dr.

Wed morning we saw our AMAZING dr and he, of course, wasn't happy with the brace fit. He was happy with Noah back, just looking at it. He said it looked great, and you'd never know except from the xrays that he still had a curve. He has decided that Noah will wear the current brace for the next 6 months and wants him to wear a night time brace also. So, one during the day, one at night. They measured him for the night time brace yesterday and we will be able to pick it up in 2 to 3 weeks. I thought this was interesting, because I'd heard parents having one or the other, not both. Apparently, the 'Providence' brace for night is more ridged and restrictive, but he said they get great correction out of it.

So, long story short (lol), this will not be our last brace like we had thought. No MRI results as of now and no real xray numbers in this brace as they made more adjustments after we took xrays.

On a high note, I don't think I have EVER heard the term 'EDF' on all of our trips combined as much as we did this time. , you would have been proud :-)

Thanks for letting me vent

~