So we had our visit today with Dr. Vitarbo and we won't be transitioning straight to Shands. After examining Alex's incision, we want what is the best possible scenario for Alex and that would be to let his scalp heal a little longer so that once the fabricated piece is put into place, the skin will allow enough room to pull over it. What we don't want to happen is to go in too soon and have to have ANOTHER couple of surgeries... I want this to be the LAST and hopefully it will! I am excited that my family will be put back together and scared at the same time because of all the help I have here that will not be there. For example... Randi and I do alot here, don't get me wrong... there is no DOWN time here but I also don't have to keep after a 1900 sq ft house, do laundry and cook for 4 people, shower Alex, and if I don't feel like doing something or if he aggravates me... I just ask the nurses to do it! Not so much at home :0/ And if he doesn't like me that day....well that just makes it a little harder to accomplish the task at hand. We have alot of things to be done to get ready for Alex to be able to maneuver in the home... and now that we only have a couple of days before going home....well its just not all going to get done...even though Chad has been checking into things and trying to tie up the loose ends. Ramps, carpet ripped up, bathroom made accessible, bed rail, visual baby monitor, hand held shower head extension, bars in tub, gripper things for tub, pull ups, groceries, christmas tree taken down (yes my tree is still up with all the christmas trimmings to boot, lol).... and I am sure there are things that I am not even thinking of right now that I will need! Diving right in and hoping I don't sink! It's a whole new world for us at home... and I'm sure there will be days when I want to give up....but you know what.... I WILL CONTINUOUSLY TAKE MYSELF BACK TO DAY ONE.... and it ALWAYS ALWAYS gives me the strength knowing that God has my back! Tomorrow is really his last day of therapy here at Brooks.... Friday is just a formality of signing papers and heading out. I told him that I needed him to make it his best day ever here tomorrow and give it 110%. I have my weekly meeting with the doctors and case manager tomorrow so I will know more about the out patient therapy and day program and I will fill you all in on what is yet to come. I think Randi and I have decided that if he has therapy every day from 9-3 then we will just head to the beach while he is in class, lol! I think we have deserved some down time ha! Alex has a cat scan scheduled for April 12th and once Vitarbo see's the results she will schedule his surgery for the end of April sometime. I told her that we have a Faith Hill/Tim McGraw concert to go to so we need to be up and running for that, lol! She also gave the ok for Dr. Beck to begin the laser treatment necessary on his scar tissue so that maybe we can start capping and then while in surgery maybe just take all that out together....YES! Put in favors to see if we can get this G-Tube out of him before we leave here because it is nothing but something else for him to obsess over. At this stage of his recovery he is a little OCD... just what I need... NOT! ADHD and OCD..... should make me OOMM... out of my mind or CCFCCP.... coo coo for cocoa puffs! LOL!
We got out tonight to go and see "THE LAST SONG" ... probably not the best movie for me to see in my current state of mind...HOWEVER.... it sooo goes along with what I always tell you.... LIVE FOR TODAY... do not take your blessings for granted.... love,hug and kiss those babies no matter if they are 2 or 20! If you don't say "I love you" every day... START! One second, one phone call can change your life forever and we are never promised tomorrow! Take time each day to thank God for one or more blessings in your life....and if you can't think of anything... thank him for bringing Alex into your lives and for keeping him in mine! I can't thank all of you enough for your continued support and this community is amazing and I am in awe that we still have this many wonderful people in the world .... Jacksonville ... you are awesome! Heck... I shouldn't stop there because I receive emails and mail from Washington State, California, Connecticut, New York, New Jersey, Atlanta, Mississippi, Louisiana... Iraq, England, Italy, Spain... Alex Michael has touched people ALL OVER THE WORLD.... how crazy is that?! He still hasn't quite grasped the concept of all of it... I can't wait till he does! Please pray for me and my family.... we still have a very long road ahead of us. Pray for the "tone" in Alex's body to subside so that in continuing his day program he may be able to gain some ground with the walking and use of his left arm/hand. The movement is there... he just has to fight the tone to accomplish it and right now it's too much to overcome. His leg is in alot of pain these days... you can barely touch his foot/leg without him complaining and saying "ow". So just pray.... I feel it is so close to him being able to walk... it's right around the corner... He is determined he will and for some reason he has April 20th in his head so I guess we shall wait and see! The mind is a funny thing ya know!
Adam Walsh Act
Brusha Brusha Brusha song from Grease (slumber party where she is brushing teeth)
Signing off.... will give you more 411 after I speak with the docs tomorrow. I have many requests to continue to blog once I get out of here and don't you worry.... I surely will be! I gotta let all this out somewhere lol!
thanks again for all the continued encouraging emails... I LOVE THEM and need them on a daily basis.
Till tomorrow... THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!