Sorry I haven't blogged in days... before I knew it, time had slipped away and I now realize it has been days since I have given anyone updates. My birthday was Saturday and my precious friends gave me a luau swim party with a great turnout... even Alley Pooh got in the water and enjoyed himself!
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Today was our first day back at therapy and of course the craziness begins! Alex hadn't gone to the bathroom in 10 days... stool softeners were not working... broke out the muralax last night and it went into full effect this morning as I was getting him ready! Rush to the bathroom...make it in time... but it took about 15 minutes out of my morning ritual and I still had to go to Firestone to drop off Chad's car as both rear windows decided they didn't want to roll back up and needed new regulators. Thank God Randi, Carly, Nick and Aaron all helped me get his stuff together last night so that I didn't have to gather all the stuff this morning or else that would have just sent me over the edge, lol. Get him dressed, out the door, in the car... down the road to Firestone... wait in line for 10 minutes, get it squared away... drop it off, head to therapy. We got there in record time, on time... thanks to summer here and no school traffic! Get him in the chair... insists on putting on his brace so he can walk in the door, Carly grabs the wheelchair, leg rests... Randi grabs his backpack and the suction machine... we are heading in the door. Alex all the while is drinking water, rinsing mouth and spitting in cup... enter the hallway... get to the day room, push him up to table and the devil begins his work! Alex had been irratic already this morning because his schedule was changing and new routine was setting in again since we had not been to therapy in 2 weeks. He is all over the place, leaves the table, wheels over to the refridgerator... then onto the sink, dumps out his spit cup, fills his spit cup with tap water... DRINKS the water in the cup.. I finally realize what he is doing... take the cup... trying to divert him etc. Meanwhile... I look at his caregiver and explain that there are some things I need to go over with her since he has been out...ie. suction machine.. "thick it" stuff for liquids etc. Without going into the account of things and how I felt this morning or rather how "they" made me feel this morning... long story short...We certainly don't want to be a "problem" or "issue" to anyone and so Alex is not going back to day therapy. "Alex has had so many medical set backs".... No matter how hard I try or which way I turn... someone... the DEVIL... makes it always so that I am getting kicked in the face. HOWEVER.... he is NOT going to win this battle... I had decided when I left today that maybe it was just best that Alex does outpatient therapy... couple times a week until he is healed and noone has to "deal" with what I go thru every day! He may not be in day therapy, but HE WILL GET what HE needs even if I have to hire his own physical therapist and occupational therapist to work here with him! I will not let the devil win... I will not let anyone tear down what I have worked so hard to achieve and I will see to it that Alex gets whatever it is he needs! ALEX WILL COME OUT ON TOP NO MATTER WHAT! I'm not sure what or how many times a week Alex will get all the therapies he needs... but I will do whatever it takes to make sure he is getting the repetition that he needs in order to continue with progress. I really thought today was the day and was looking forward to him getting back in the routine and back on track. Not so much! Sooooooooooo, no more day treatment as of now... Wednesday he will begin out patient therapy... we will make the best of it!
Alex has been practicing walking more and more... wanting to walk to the bathroom or certain places... he is becoming more confident with his walking and I love the fact that he is taking the initiative to do so. He was being a little showboat at my birthday party :0)
Please keep the prayers coming... once again I feel like I am climbing another hill... just trying to keep afloat and make the best of what is to come! Alex has been getting better with his throat... he has not had near as much mucus and it is getting easier for him to swallow certain liquids once we thicken them up. He is losing weight... I can tell in his face for sure as well as his "rolls" are thinning... not as much flab lol! He isn't really eating much... I have to bribe him to eat ... but we are making it thru... surviving as best we know how! I keep checking his temp just to make sure he isn't getting dehydrated... he isn't as obsessed with the water spitting deal as he has been... slowly we are trying to wein him of this obsession.. OBVIOUSLY, lol! The more he can start drinking and swallowing... this will lessen the obsession and need to keep his mouth hydrated. Can't wait until July 8th when we go back to the ENT to find out what is going on in that throat and if it's healed enough for that trach to come out!
Lot's of great things to come... Alex IS ready for whatever comes his way... ME, HIM and JC.... WE GOT THIS!!
PEACE~LOVE~N~THUMBS UP!
Lisa
PS... A SPECIAL SHOUT OUT TO..... RANDI, CARLY AND AARON... Ya'll are awesome and I can't thank you enough for all you do on a daily basis... housecleaning, laundry, dishes, cleaning out the fridge, grocery shopping, Alex sitting, Alex changing... go, go, go....TEAMWORK... we make a great team and I thank you so much as you make it to where I can actually SIT DOWN and hang out with ya'll! LOVE YOU!
