So last night we got our "contract" in email from ABR Canada. Many mixed feelings here with this subject.
Pros-
*This could be the thing for Daniel
*It is non evasive
*It can be done while he sleeps
*They focus on the head/trunk first - which is where Daniel needs most of his help
*There are measurable to see if he is improving (in my eyes)
* Just have a gut feeling, that this is going to make him flourish this year
Cons-
*This might NOT be what is for Daniel
*It is a LOT of money, that we could be potentially pissin' away
*Again, its expensive (my eyes) but i would not forgive myself if we didn't do it and it could help him.
*The ABR machine that isn't necessary but that can double and triple the ABR hours applied has a high monthly rate (like adding a car payment).
To an already stretched budget. I will just feel really bad if things don't work out and we have used all this money for nothing. But as with any therapy, or different treatment you have to try it right. The thing that sucks is its not like taking a sip test of a drink to see if you like it. It takes months, years to see really good results. It is a huge thing. Can you tell I'm stressing about it. I keep going back and forth. We're going, no we can't its not feasible to go financially. I HATE this feeling. I want to go, I really want to try this for Daniel. Give it a year and see if there is progress. At least 3 hours a day for the next year, might sound like a lot to some people, and really it is, but if it means your child sitting up, or walking......3 hours is nothing. If I didn't do it and he can't sit or walk unassisted, I took that away from him because I couldn't' manage 3 hours of my day?? Come on??
OK so I have to put things in perspective....Daniel potentially being able to walk, or my house being clean?
Daniel being able to control his arms better, or the laundry done? And if this type of treatment doesn't work........
OK so what then for a year my house is not the cleanest, and no one is wearing clean underwear for a year.........BIG DEAL!!
Daniel is still doing this gagging thing and I don't think its reflux anymore....or if it is then the meds we're giving him aren't working!! Went to the pediatrician yesterday and she is consulting with his ENT and a gastrointestinal doctor to see what we can do. It is very difficult to get a diagnosis when we're playing a guessing game. This is where the non-verbal issue gets me flustered. I wish I could just climb in his little brain and help him form the words. It just sucks, seeing on his face he wants to say something and he can't. Imagine what it must be like in his world.
12 comments:
Oh, Melanie... You just can't relax, can you??!!! :)
We saw results the FIRST week of ABR. Most of our frinds here saw results pretty fast too. We never doubt after we assist to their new parents talk. There is a Before and After of this talk.
It came out a bit uncomprehensive (not native english speaker) but bottom line is I know you'll be happy as soon as you go to Montreal and listen to them. You ARE NOT wasting time nor money.
When is your trip?
Ah! Yesterday we got 600 hours of ABR done (no machine yet). And we are SO HAPPY. Her body has changed in ways I couldnt have dreamt before.
Our trip is in 8 days and counting!!
I cannot wait to begin. I just hope Daniel tolerates it well. Heck I'm sure if I turn on the cartoons that I've been yelling at everyone in the house to turn off, he'll be fine!
Maybe instead of Spongebob I'll take control of the remote and put on Signing time Videos......he loves those and they are educational too!
ooooooooh I can't wait! 600 hours and no machine. Kudos to you. I am so glad she is doing well!
I'm sorry you dont speak spanish to read my blog. But there are some videos and pictures too :)
You know, I already told my whole family that the machine just isn't feasible right now. Our budget just can't stretch that far at this point. I'm giving ABR a year and then we'll go from there. Honestly, I've searched the web and haven't found anyone yet who regretted doing it. That's saying a lot. Plus, they get results that I can see, which is more than any other therapy I've found.
I'm stressing too, but that's because I'm largely unprepared!
Our thoughts and prayers go with you guys as you travel and learn cool new stuff. Can't wait to hear all about Daniel's amazing progress. :o)
I can totally relate with the stress about ABR time and $$$. But I have to tell you, that for some reason, i just know this exactly what Paxson needs. And I'm praying everything else will fall in place... we can commiserate all next year on our messy homes :)
see you soon
Good luck in Montreal. I was stressed out about going to CME for 3 weeks in Montreal and kept thinking that maybe it was a wrong and beyond expensive decision. I will never know if Elizabeth's improvements were from twice a day therapy but I do know I will remember this as a time that we spent together and did a lot of fun things and just hung out. It is nice to be away no phone calls to make, houses to clean it's just us to worry about. We have been in Montreal over 2 weeks now and I love it here. If the weather is nice take Daniel to the Botanical Gardens the pumpkin fest is great. The Biodome is fun as well on a rainy day. Good luck parking, my car has had the biggest insults during our trip, there are a couple new scrapes and bumps that will remind us of Montreal.
Melanie,
It is a lot of money and i can understand your stress. I think you need to go into it with an open mind. Obviously, you've spent a lot of time with pt's and ot's and drs telling you what you need to do with Daniel. ABR will tell you to do the opposite. It is really hard to go against the words of the experts but I can tell you that everything ABR has predicted has happened. Whereas the medical specialists have been completely off base when they were brave enough to make any predictions.
As to translating web pages, i use fish babel to read mama terapeuta's site. Doesn't come close I'm sure to what she actually writes but enough for me to get the gist of it.
Good luck with your trip.
Wow, I'm surprise Jaqui!! I have better news though (I think): http://mamaterapeuta.wordpress.com is in english! Just started it, but I'm working on it. I just hated not beeing able to truly communicate with all of you...
If you can read thru my misspellings, it should be better than fish babel!
Oh, and good luck to all the ABR newbies!! Have a great trip!!
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