I was hoping that Logans PT status would be at about the same as we were last week...because honestly...I don't see the changes that are happening right away because I spend every waking moment with him. Occasionally I will think..."man, he used to be able to do this." or "I thought last time that he did the treadmill he lasted longer." but as far as really *noticing* changes weekly it is so subtle to me that unless it is pointed out, I cannot really tell. I hope and pray that doesn't make me sound like a bad mother...I love this little boy more than anything (except the girls...I really love all my babies just as much as eachother!). Anyhow - what I am trying to get at is that I think/hope/pray all week that "next week" there will be a positive change. You can only go downhill so long before things start to improve...right?!?!
This week Logan's therapist noted that his scapulas are beginning to "wing" (this means that his shoulder blades are protruding from his back because the muscles are not doing their job of holding them in place), his right scapula is worse than his left, his stamina on the treadmill was significantly lower (which I kind of expected because he is just so exhausted), his core muscles are weakening, and the tremor was much worse this week than it was last week. The P.T. was extremely glad we were able to get into the neurologist so fast (this Friday)...she is actually going to type up a letter for me to give to the doctor specifically so that I won't forget anything. She is also faxing all of the weekly reports that she does...but she is very concerned with making sure the doctor does a full in depth evaluation. This makes me feel a little better...
Logan's behavior has been rotten for over a month now. I hate "reporting" that...but it is the truth. The P.T. and I think it is a combination of feeling so crappy, not getting a full nights sleep, and just experiencing all of the changes so fast and he doesn't understand what is going on. It breaks my heart, but at the same time I am so stressed out that the tantrums only add to the stress. I can't even imagine what he is going through. I wish that I could take it away and he could just relax. He can't sit down and have a glass of wine and a bubble bath and forget his troubles (for the time being) like I can. :(
I have been trying to remain strict with the discipline bc he is so smart that if I budge even a little, he will catch on and take full advantage. He did lose his t.v. (the documentaries that he watches every single night) a few nights ago bc he refused to get in his bed. I had to be the bad guy and turn it off...but you know what?! That next night he went to bed without hassle.
If you pray -- please pray that we are doing the right thing -- making the right choices in the doctors we choose to take care of our Logan. Also pray for the doctors patience & intelligence -- this obviously isn't an easy or typical case. Pray for Neil and I that we maintain our patience with the children and the doctor's. Also for our girls -- Emily and Hailey -- to know our love for them is infinite. I am so afraid that they might think Logan has become more of a priority. Each child is very special to Neil and I. Most of all -- Pray for Logan's body -- that it may receive complete healing.
Thank you all so much -- and I will keep updating as I can!
Autumn
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