Alex has had a great week of therapy last week.... working at his full potential! We really had a great week .... we are trying to get him back into day treatment for two days a week so that he can get some executive skill learning which will help with the filtering of appropriate and not so appropriate words and timing. He will get the social interaction that he needs to enable him to reenter society and socialize in an acceptable manner.... relearn the do's and don't of proper etiquette if you will. YAY! So we had a really great week like I said until Friday came. THEN THE CRAP HIT THE FAN! I get a phone call from Hospital Homebound stating that they are going to change his teacher.... the one that has been with him since his 2nd day at Brooks Inpatient Rehab. Anyone who knows us and what we deal with on a daily basis... surely WOULD NOT do such a thing and throw a wrench in our already complicated and stressful days! Consistency.... routine.....this is what gets us through each day. You know what happens when I change something in his everyday schedule or we do something out of the norm... he turns into some OCD RAINMAN and I have to deal with the repercussions of the aftermath. I cried all day Friday because I KNOW what this is going to do to Alex... what that will in turn do to me and my days.... but most of all... we are going to REGRESS. We are sooo close to graduation that I cannot afford a setback such as this at this point in his schooling. He has trust issues... he has attention issues.... and after speaking with his cognitive therapist... for Alex with an injury as severe as his and post traumatic stress disorder that he still exhibits.... this can be detrimental to his success in his finishing the 12th grade on time. ROUTINE... CONSISTENCY.....SCHEDULE....TRUST.... these are all vital parts of his world as he knows it now. Because he knew what was going on Friday, his therapies on Friday afternoon suffered because he is freaking out worried about what is going to happen this week with his teacher and so on. I am going to do everything in my power to keep his current teacher or I will finish with him myself. We only get her 3 hours a week now.... what's 3 more hours to take on myself... really??? It would be worth it more for me to take on English IV than to have to introduce another teacher and start from scratch. I just don't have it in me to deal with the repercussions from the change in his environment. He is already stressing and freaking about going to day treatment and now they want to throw this at him? I have ENOUGH stress in my life without adding more on top. PRAYERS NEEDED please please.... It is vital that Alex be able to keep his same routine in school because we want him to graduate with his class and he has been doing so well. If it's not broke... don't try to fix it.... especially when we are sooooo close. Please pray that Alex is able to keep his current teacher for English so that his world is not completely turned upside down and then in turn so will mine. Yes I realize at some point he is wanting to go to college and there will be change... but he is not at that point now and who knows... it may take another year or 2 until he gets to where he is comfortable and fully recovered from his brain injury and post traumatic stress disorder. For now we need ROUTINE.... CONSISTENCY...SCHEDULE...TRUST in order to maintain somewhat of a normalcy in our lives. YOU MUST LIVE IT TO UNDERSTAND IT... I have no better way to explain it.
I'm sure many of you have been following the Congresswoman Gabby's story.... so have we. HITS VERY CLOSE TO HOME! WOW! However... after speaking with several of Alex's nurses.... she is doing a WHOLE lot better than Alex was at that point. SO GLAD TO HEAR! The statistics are just unreal and you realize how much of a miracle she and Alex truly are! I sent emails to Gabby at her congressional website....and also to two of her friends/senators websites that were actually in the room when she opened her eyes for the first time. I know exactly what they were feeling and it all takes me back so quickly to those first two weeks in ICU with Alex. I was hoping to talk to or email back and forth with the family to comfort...give insight.... whatever I can do to get them thru the next months ahead and what they will be facing. A traumatic brain injury is a crazy thing and they are in for the ride of their lives. I think Alex would be such a great inspiration to them and it would give them hope for the future and what they are facing. I think if they read my blog they would relate and feel at ease to know that what they are going thru.... I have too and we survived! we are still surviving! Baby steps... day by day..... this too shall pass. There are always curve balls to dodge.... and life will never be the same... you just have to make lemonade out of those lemons and add a little sugar!! :0) I was checking my spam folder tonight and came across an email of a young gentleman, Matt, that wanted to put me in touch with Congresswoman Gabby's family...HOW CRAZY IS THAT! I'm sooooo excited! This is AFTER I sent emails out to the family and he had no idea that I was even trying to reach them. GOD IS GOOD AND WORKS IN MYSTERIOUS WAYS! I hope it all works out.... I truly believe that we can do some good in reaching out to them.
Below are some videos of Alex this past week... we also got to meet some of his biggest fans... Katy Vega and her son Calvin. We met them at therapy last week and Alex even gave her his one and only bracelet and she was ecstatic!!
A quick update on our little friend Gabi that we talk about often and she was also in the Tim Tebow documentary with Alex.... we went to see her on Friday. She looks great compared to when we last saw her in ICU at Wolfson's Childrens hospital shortly before Christmas. She was sitting up in bed.... Todd was feeding her some chocolate pudding or trying anyways. She has a feeding tube and has weird sensation in her right hand so it is difficult for her to read her braille. She cannot speak at the moment and gets frustrated because she knows what she wants to say but cant so she is working with a speech therapist twice a day to retrain that speech pattern again. Please keep our little angel in your prayers... we are soooo hoping that she will begin to recover from this last set back and get to go home. She lost her sight when she was two so I am really hoping that she can get to where she can atleast read braille with her right hand again so she can read again. PLEASE SEND PRAYERS UP TO HEAVEN SO THEY CAN GET ANSWERED..... she really needs them right now and you can never have too many!
I am going to be holding a "Celebration of Life" meeting for those that want to be involved and volunteer on Sunday Jan 23rd. I will post the location and time of the meeting this week so please keep checking back if you would like to help out with the celebration or you have ideas.... the more the merrier! I am hoping to have it at Mudville Grille on beach boulevard but I need to check with the manager so I will keep you updated.
I text the ENT on Friday to see if they had gotten any results from the sleep study and she had already placed a call to them and was told that she should have something by Monday...YAY! She said if all looks well then BELOVED trach will come out this week!!!! OMG.... WE ARE SOOOOOOOOOOO SOOOOO CLOSE! PRAYERS .....PRAYERS...PRAYERS....PRETTY PLEASE!
Also... don't forget that if you want a tshirt from the celebration of life... please send me an email to firstname.lastname@example.org to reserve one for you. I will only be ordering a limited amount in fear that I won't be able to sell them and be out the money. Sooo to ensure you get a tshirt, if you want one... please email me the quantity and sizes.
A quick shout out to our favorite JSO Officer...and very close friend of the family...CARLY REED... HAPPY HAPPY 29TH birthday today! WE LOVE YOU and thank you so very very much for all of your love and support over the past year and truly hope that today was one of the best birthdays ever! LOVE YOU CARLY BOO!
Closing for now..... hoping to post good news about the trach tomorrow!!