We arrived at Wolfson's Children's Hospital at 9:30am got Alex all checked in and they videoed him prior to the procedure so that they could measure his ranges of movement once the baclofen was injected into his spine. They measured him at 2 hours after the procedure and again at 4 hours. The results were AMAZING and a tremendous improvement in flexibility! An amazing thing to see right before my eyes that Alex could go from having so much tone in his left wrist and left foot to looking like a rubberband man! She could take his toes and bend them forward and backward like crazy! She could bend that left wrist forward and backward without the tone fighting gravity... amazing amazing results and a PERFECT candidate for the baclofen pump! There was one side effect that was on the downside and that was when he went to walk, his left ankle was SO LOOSE and relaxed that his ankle rolled like nobody's business and it was hard for him to get that foot straight onto the ground for mobility. This I am told can be controlled with his brace and hard work at physical therapy once the pump is installed. Physical therapy will help regain strength in that ankle as it is weak now and tends to roll when he walks barefooted. The medicine had such a great effect on him that it made it too relaxed. Docs think that they will place the catheter further up the spine to focus more on the left arm but whole left side will still get relief with the medication. You are all probably thinking the same thing I am.... THIS IS WONDERUL and can't wait to see him scheduled for surgery. WELL..... Mr. Alex is not so caught up in the whirlwind as we are and insisting he is NOT having another surgery. Soooo, this is where I need my prayer warriors again.... Please pray for Alex's peace of mind that this surgery is just like putting a band aid on compared to the 10 surgeries he has already had! Of course there are always risks with any surgery but nothing so severe that it isn't worth a shot to see if we can get that left arm responding once the tone is gone. I asked him one morning as I was helping him cover himself in bed.... "Doesn't it piss you off that your left arm doesn't work?" "Doesn't it bother you?".... my simple minded, one emotion, precious 4 year old in an 18 year old body looks at me flatly and says... "Not really", as he shrugs his shoulders. "I guess I'm just used to it now". He jokes from time to time and speaks to his left hand and will say things like " DO WHAT I TELL YOU TO DO" and spank it a couple of times lol. But I truly feel like he is content. He is ok with life and how he lives it day to day. he has no worries, life is Grand and he is happy to be alive. Why can't we all live life that way? Things were so much simpler when we were children ages 4-6. Our major worries were if we were going to be able to eat at McDonalds and get some of those delicious french fries in our happy meal. There are times when he gets anxious and I KNOW that something is bothering him, but he really doesn't know. He can't comprehend it... He can't quite put his finger on it... express it. I have just gotten used to the tell tell signs of his discomfort and things that make him anxious. I pray that his heart is lightened with the possibility of the baclofen pump surgery. I think that this could be the beginning of new life in that left side. He is still progressing, making movements we haven't seen yet. Squeezing and picking up things... learning how to relax that left arm so that the tone subsides. Our 2 year mark is coming up... WOW! Looking back how much we have endured and conquered.... still sooooo much to accomplish and look forward to. You know what... LIFE IS GRAND! We are blessed beyond measures. I made a statement on FB the other day.... "You never know how strong you are until being STRONG is your only choice"! AMEN! When any of you get down or think that life is horrible or not turning out how you wanted it to. Stop and think of Alex.... think about how he looks at life and all that he has been thru. LIFE IS GRAND! Stop looking at what you don't have and be thankful for what you DO HAVE. If you are reading this ... YOU HAVE ACCESS TO INTERNET, lol... that in itself is something to be thankful for, lol! Health, Shelter, Family and Love.... sooooo many many things to be thankful for. Christmas is around the corner, find some quiet time to thank Jesus.... HE is the reason for the season. Holidays can be depressing for some and if you are in that mix.... I pray that you find peace and comfort in whatever ails you and that you are able to spend time with loved ones be it family or friends that can lift your spirits. Count your blessings.... and then count them again....I'll say it as I've said it many many times. No matter how bad you think you have it... someone ALWAYS has it worse than you! As bad as I think I have it some days.... even at my worst when I think I CAN'T possibly take another day like this.... I see someone come into Brooks Rehab who has it 100 times worse than me or Alex! Blessings all around us... all we have to do is open our eyes to the truth and focus on the positives! Wishing you all a wonderful holiday with safe travels. Blessings to you all.... from our house to yours... LIFE IS GRAND...... MERRY CHRISTMAS!!
PEACE~LOVE~N~THUMBS UP!
LISA
