So I decided instead of trying to write a million page long post to try to catch you up and will give you a few posts that I have made to a support group of mine just to give you an idea on what has been driving me bonkers lately ;)
Oct 2nd - Ended up on the weird side of YouTube and stumbled across this:http://www.youtube.com/
I KNOW he still aspirates, so I sort of think this swallow study is pointless if it weren't for a good way to see his therapists again and get the ball rolling. I guess they DO need to have an updated study before they will do anything feeding wise anyway. And logically I do know there has been progress with his aspiration. It all used to be completely silent, about two years ago he started coughing occasionally on thins (aspirated on every swallow, coughed occasionally) but never on thickened (even though he was still aspirating all consistences). I don't think he coughs all of the time on honey when he aspirates, but at times he does now cough, which is another huge milestone.... Eating, tho... seriously... he SHOULD be doing better. I think we (hubby and I) hinder him. He knows how to play us and hubby and I are on opposite ends of the field. RJ yells at him and threatens time out or going to bed or losing something else to get him to eat. I get mad, I get frustrated, And yes sometimes I yell, But I TRY to praise him and play games with him... use his magnet board (sort of like doing a sticker chart.. only we didn't have any stickers and we had a gazzillion and one magnets and a little red colored "white" board just for him) and using a timer are the two things that have seemed to motivate him and he'll do great one meal, but then crappy the next three and that trick isn't going to work again for awhile. Having both hubby and I at opposite ends of the spectrum suck. I want someone else to take this on for awhile with a solid plan of "this is how we WILL respond, got it? Nothing else." I want RJ to get off of his ass and freakin' help with this and GO TO THERAPY. I think he's been to feeding therapy with Tristan like twice in his life...? Screaming at him doesn't do shit.. you think that is going to make him WANT TO EAT? We'd have to spend our entire lives yelling at him and forcing it down his throat for that to work. I want Tristan to WANT to eat. I want to put a plate of food down in front of him and let him do the work of picking it up and putting it in his mouth. I want to be able to eat my meal without shoveling in bites in my own mouth as fast as I can in between trying to coax Tristan to take a bite. Every meal is an HOUR. Shit my friends give their kids food and they are done in like 15 minutes. I want him to go to school and go to bed without being hooked up and having over 50oz of food pumped into his body EVERY.SINGLE.DAY!
Oct 17th -
I give up. I swear every single time we start getting regular respite care again and I can start getting caught up with everything, something happens and we lose them again! Newest girl just lasted like 3 weeks... she was only actually over 3x for about 1 1/2 hours each time. I hadn't really even taught her anything yet!
Nov. 15th -
OMG. I totally need to gripe here for a minute! So after a few years I finally went to the docs for myself the other day (we've been without insurance since shortly after I had Rowyn who turns 3 in a couple of weeks, so going to the docs wasn't really an option unless it was a life/death thing for me and hubby) So my biggest issue is that I have had constant pain in my hip since I was pregnant with Rowyn. Obviously they didn't do X-rays back then since I was pregnant but I was in physical therapy throughout my pregnancy. My midwife and physical therapist both said that hopefully it was just my ligaments stretching from being pregnant and that it would resolve after pregnancy. It hasn't. Sometimes it gets much worse than others.. like to the point of not sleeping, hardly walking. My hip will also pop out of place at least every few weeks. So doc takes an x-ray and says from what he see's there is some arthritis going on and what looked like past damage (to me it looked like a bunch of little slivers of bone sticking out of the top of my hip socket, and no spacing between my hip joint and the socket all around the bottom.) So my x-rays were finally read by the tech and his nurse called today. His findings were that it's completely normal to have arthritis and have constant pain to the point of affecting everyday life at my age.... I just turned 31.. this started when I was 28 years old. Now.. what I wanted to yell was "BULLSHIT! WTF does he think I am eighty years old?? " But what I actually said was, "No, I have been in constant pain for over three years now. Passing it off as "normal" is NOT acceptable." She said she would "speak with him" about a referral but that he didn't think it was necessary since it's "normal at my age." I'm fucking sorry, but I do not believe for one minute that it is normal to have an arthritic hip and be in constant pain in your 20's!
Grrrr.... rant over
More added to that post after someone suggested more exercise to help with pain: Most of the moves that my PT gave me were yoga moves.. and it used to be big part of my life and I even taught for a few years and I know that is something I really need to bump up more - Stretching and strength! I've been working out A LOT since spring, but what I've been doing has probably made my hip worse (especially since the xray showed some arthritis).. I've been having huge issues with weight gain since Rowyn was born and am almost at my all time top weight right now, which I am sure has just further contributed to my pain... But for months I was running 3x per week (worked up to running 5k 3x per week) and doing Zumba for 1 hour 3x per week. Also doing Yoga after running each time (so 3x per week) and some light strength training. I was also was tracking my calories eating between 1,500-1,700 calories per day (same as Tristan gets! lol) - eating a healthy diet, drank a ton of water every day, no soda, only occasional sweets and junk food was rare... Didn't lose a damn thing in all of that time. My body is so damn confused but without insurance I couldn't really figure out what was going on.
After the Turkey Trot run on Thanksgiving I think running is going to be out.. which sucks so bad.. While I HATE running (seriously, that goes through my mind EVERY TIME I RUN! LOL) I also worked really hard to be able to go that far (AND not have an asthma attack! Go me!) I probably should drop Zumba... which is so fun and I love but is also high impact.. We need a Water Zumba class!... We have a couple of old lady water aerobic classes in the mornings at the Y, but I will have to rearrange my work schedule to do it... but it's also pretty obvious that I need to make some changes since this really is not working.
Nov 16th [this one is a HAPPY POST!]-
Since about the middle of last week I have been setting a timer for Tristan for each meal (30 min.) and stopped counting his bites (goal has been 13 bites for a loooong time.. He'll have a few good days of hitting it 2-3x per day, and then weeks of not coming close at all.. Super frustrating).. I have been talking to him A LOT about eating more food so he wouldn't have to be hooked up to his feeding tube all of the time. How food gives him energy and makes him grow (which was super funny in Taekwondo the other day, they were asked what makes you faster, Tristan yelled, "Eating all of your bites!!" )
So anyway, I hope I am not jinxing this, but he has CLEARED his plate for the last three meals!! Dinner last night and breakfast and lunch today!! I am starting to track his calories again and he's had around 500 calories TODAY!!!!! I told him every time he can finish all of his food I will skip a feeding.. since he finished dinner last night I cut out about 300ml's last night. He didn't eat that much at dinner since he has pretty small portions on his plate, but a promise is a promise and I think for today at least it is paying off! We skipped his lunch feeding since he has done so well today. I love good eating days!!!
And now today: Well at least today hasn't been the same ol' boring...
The Pacifica had a dead battery.. Yet again.. (And when I was trying to get the kids to school, of course.) So I throw it in neutral and push it out of the garage (which Tristan thought was seriously awesome) so I can use the car to jump start it. I move the car so it is parked sideways across the driveway so I can connect the jumper cables (FYI there is not enough room in the car for everyone plus it was just in an accident on Saturday so not safe for me to use it to drive the kids to school) and guess what I see under the snow and leaves in our neighbors yard!?!? A little tiny pink bottle barely poking through.. It was Little Miss's baby doll!!! She was very frozen so I put her on the radiator to thaw all of the ice off of her. She is going through the washer next. Lil Miss is super excited! She had to kiss her all covered in snow.. But then she told me to put her in the fridge so she wouldn't melt. LOL.
Laura comes and gets Tristan since the Pacifica wasn't runing yet (THANK YOU LAURA!!!) and after sitting for a bit I finally get it going again.. I let it idle for awhile and then decide to pack up Rowyn to hit the post office and realize we are almost out of gas. I was literally pulling up to the pumps when it died! Had to push it like three more feet to reach. LOL. Since we were there and Rowyn was being so good we got a donut and hot chocolate as a reward
Also, just in case you were wondering, that super great eating stage didn't stick around. I'm pretty sure I jinxed it by talking about it. LOL..
Oh well.. life goes on..
Oh well.. life goes on..