Highs and lows

With this illness there are so many highs and lows that you feel each day that it can be SO exhausting!!  Just the caring for Kera alone right now is a full time job.  She currently has severe weakness on the left side of her body, which affects her movement of her left leg, arm and facial muscles.  She has been doing physical therapy and occupational therapy for about a month now to help her strengthen her muscles that aren't being used and to help to train her how to walk better, and  get more function in her left arm and hand.  Her muscle tone is very low and has what they call spastisity(sp?) in her muscles so they automatically want to be tight and fingers curled, arm bent, knee locked, etc.
She enjoys using the adaptive tricycle during physical therapy the most.  I want to get one for her to use at home, especially once the weather gets nicer when we can ride outside.  But guess how much one of those will cost retail?  About $3500!!  I still have to look into it some more and see if our insurance will cover something like that.  If anyone knows about these bikes and wants to give me some direction here that would be wonderful. ;) We are also going to have an assessment done on Monday for speech therapy to see if we can get some help with her learning to talk more clearly and to have an easier time eating. Right now it's very difficult to understand much of what she is saying, and I'm constantly trying to decipher what she is trying to tell me.  I've never been good at reading lips, and it's frustrating to both Kera and I when she can't tell me what she is saying and I can't understand.  She's also having more trouble eating and swallowing because her mouth muscles are weak, and she can only open her mouth so far, so of course brushing her teeth is difficult too.
One of the first things they did at physical therapy and OT was to order an ankle and hand brace for her to wear.  The ankle brace, DAFO, she wears all day, and it does help her foot and ankle stay in position and if she isn't wearing it her toes will curl up and her ankle will turn her foot in.  So I'm grateful for the brace which does help some.  The hand brace she wears all day and keeps her hand stay more open.  She wears something under the hand brace that keeps her fingers open as well.  She has been walking better with the brace, but her balance seems to be worsening, so while her ankle is supported, she needs me to hold onto her while she walks because she will easily lose her balance and fall.  This is so hard to watch.  I hate the worsening symptoms and she hates being so dependent on others to do simple tasks like getting dressed, walking to the bathroom, and getting up and down stairs, etc.  These are all so difficult.  Of course I have three other kids, so I try to remind her to be patient with me, but she often gets upset because she will be sitting on the floor because she has lost her balance and fallen, and sometimes if I'm not right there by her I don't hear her calling me because she has a hard time yelling ,or talking loud.  Can you imagine it??  It's not pretty.  I wish more than anything that she didn't have to go through all of this, but I also know that it is teaching me patience, which has never been a strength of mine.  I am constantly praying that I can get through each day without losing my mind!!!  My boys are usually pretty good about waiting until I help Kera to help them with things they need.  Except of course Ryder who is still little.  Not so little though, he turns 3 this month on the 22nd!!
Like I said in my last post, Jacob, who will be 12 in May, struggles with feeling invisible, and often he feels like Kera is getting all of the attention, whether it's by getting to go to lunch with me, (as we are often traveling back and forth to therapy or to a new lady in Salt Lake City that practices natural medicines that I am taking her to see once a week now. More on that in a minute) getting a home visit from our principal or her teachers at school, getting a package or cards in the mail, or just overall being asked how Kera is doing.  He said nobody ever asks him how he is doing.  I really have been trying to make an effort to spend more time with him, but my time is often at a premium and I'm physically wiped out by the end of the day. I have been reading the Michael Vey series with him though, which we both enjoy.  If anyone wants to do an act of kindness, a card or letter or just extra attention paid to him or Michael would go a long way!
There are two new things that we are trying that I feel will be very helpful, and which have given us all much needed renewal of hope.  One is a book and CD that my mother in law was given from a friend of her aunt and uncle in Texas who went through stage 4 cancer and beat it by doing guided imagery.  He wrote a book for children that is a story of a little boy and girl who play in the woods and the boy gets bit by a poisonous tree and gets sick. There are alpha waves that are embedded in the book and in the CD, and she is supposed to listen to the CD while she is sleeping and the left brain works to heal itself.  I'm also visiting the natural medicine woman who has studied eastern Chinese medicines and has had a lot of success with helping people who have cancer or strokes, or any serious sicknesses.  At this point I will try anything that is not harmful or too invasive.  Both of these things I have felt more confident about and more hopeful about than radiation, which they said would work temporarily and the tumor would grow again, which it did.  Or chemo, which they said from the start hasn't shown to be effective at all in shrinking this kind of tumor.   I've learned through this whole process that doctors do not know everything.  They are doing the best they can, but they do not have all the answers, and really they have no answers with this type of tumor.  I know that God has put plants and herbs here on the Earth for our benefit and to help heal these kinds of sicknesses.  I pray that Kera can get some relief from her symptoms and that we can all feel peaceful and be given comfort during this journey.