This is going to be a long one...

I can't seem to decide where to start. I was thinking of going with today's events and then backtracking into yesterdays but then that seemed goofy and ack-wards, so in the interest keeping things fluent here's yesterday's breakdown--BUT before we get to that keep this in mind please. It's not very often that I feel so overwhelmed and upset that my "keep things positive" attitude starts to falter. Tonight is one of those nights though. Honestly, it's been one of those weeks so please bear with me while I work (write) through this and get it out so I can tuck it away in a little box and leave it there.

Yesterday was our big PT meeting to do the MMT (manual muscle testing) and a whole new evaluation on her balance and progression. Some things went OK, others did not. Her muscle testing showed some positive things (good strength which equates to a 5 for a score) in her arms although her right arm was weaker then the left. Then moving onto her legs she had some problems overall. Her score here was a -4. Now, that might not seem like a huge difference or problem but it has a lot of implications in regards to her overall strength. A 3, from how it was explained to me, means that she could lay on the floor and move her leg from side to side but could not do it with any force applied to it, i.e. someone pushing on it while she pushed against them. Now remember a 5 is normal, and a 3 is bad and a -4 is pretty darn close to that so that was very concerning to her PT. In regards to her strength the overall picture of her so far, is that her right side is weaker then her left, throughout her whole body. We still have some more testing to finish with that test and we will finish that on Monday.

So you might be thinking well, hell, that wasn't that bad. What's the malfunction here? Well I haven't talked about the balance and coordination part yet or, her lack thereof. The video that I have below this is just a small portion of the testing. What she was suppose to do was just stand there with her feet toe-to-heel for as long as she could. You can watch the video to see how that turned out. I was trying to not cry during these tests, watching her struggle and try and try again. She was being so cooperative, listening, and getting what was said. Unfortunately she could not get her body to behave. Some other things that we did was try and get her to do a jumping jack, which she could not. She also could not close her eyes and touch her nose. Overall they've realized that her proprioception is way off. What that means in a more in depth view is this:

"Proprioception" is a word we probably don't hear very often. But it refers to body placement, and the ability to sense where our bodies are in space. For most of us, through the many receptors in our muscles, ligaments, tendons, and joints, we are able to sense what our body is doing, and whether we are crouched, standing, turning, sitting, or moving. We can tell how close we are to something else, and can sense our bodies, through the pull of gravity, even when sitting still. But for some children with special needs, this "body position sense" is weak. Children with proprioceptive dysfunction can have a lot of problems managing themselves out in the world, because they tend to be clumsy, and invade other people's space. Since they don't have a good feel for where their body parts end and the air and objects around them begin, they tend to have poor motor control and poor motor planning.

Here are some symptoms you might observe in a child with proprioceptive dysfunction:

• Grasps things so hard that they break or tear.

• Falls and trips often, and has difficulty with team sports.

• Has some trouble climbing up and down stairs.

• Moves awkwardly-might have an unusual gait or keeps arms in a peculiar position.

• Frequently bumps into other people or the objects around him. Gets into other people's personal space and is clumsy.

• Might chew, twist, or pull on his hair or clothing.

• May be overly involved with her own body...i.e. making noisy sounds with her mouth, slapping her thighs as she walks, putting her hands on her face, wringing her hands, etc.

• Can't do physically complex tasks without help, and may need lots of visual or auditory clues.

Many of the awkward behaviors these children exhibit are due to their own attempts at self-therapy. They may roll around on the floor in a blanket, or bump into walls as they walk, in an effort to gain more sensory feedback.

She does.....every.....single.....one.....of those things up there. Watching her try and perform these tasks and then watching her just keep getting up and pulling through it was hard. Again, why is this a big deal? She's got much bigger issues going on then that right? What makes this even more of a big deal to me, the reason I want to curl up and make this all go away even more, is because this is new to her. This wasn't something she did 2 years ago. This is something that started happening and has gotten worse every month. It's another chalk mark on the board of things that Alana struggles with when she should be running around and struggling with what color backpack she wants for school, or what is her favorite candy flavor this week; fun, frivolous, 5 year old things.

As I mentioned that testing isn't done. We didn't get it completed because she was having such a hard time and, goodness do I love her PT, she just kept giving her more tries, more examples, more "You are so strong you can do this" talks. When we have the final report and grade I will let you know. It will all work out in the end, it always does.

On to today, did I mention somewhere that this was going to be a long one? PT started off good with her full of smiles and signing along the pool deck. After about 5 minutes though she was so tired and those lovely black/blue circles under her eyes where taking over her whole face. She was okay 1 minute, doing her puppets (a type of balance/muscle coordination exercise) and the next her speech was slurred, she couldn't move her muscles in any coordinated way, and she was unable to count to 10. It was enough that the PT asked if we should end the session or just let her rest. We opted to let her rest, horrible mom that I am, to try and see if she would be able to work through it after a few minutes of sitting still. She did get back to her normal tiredness but the whole session was tough. She was tired, and barley capable of thinking straight. We ended early after all and just let her sit at the edge of the hot tub while PT rubbed her feet for her.

After this I did make the call and take her into McDr, yes, I've been putting that off for a few weeks (hey, we've been keeping touch via phone and she didn't say I HAD to bring her in...just that it might be a good idea) so I bring her in after they say they want to see her even though it's McDr's lunch break (LOVE HER) and come to find out Alana has a double ear infection (ANOTHER INFECTION, no regard that she's on her 2nd set of tubes), a viral infection (she's having more rashes and has 3 large lymph nodes inflamed in her neck--again), and all this exasperating her normal crappy baseline. Sigh. We talked about the PT report, the pool episode, the eye drooping, the fact that the freaking room had to be 100 degrees and she was under a blanket and had mottled skin, oh and the chest and stomach pain that she's been having all weekend (forgot to mention that one eh...) is most likely from the fact that her GI system has stopped moving things on down the line. It was so backed up again, despite MiraLax and milk of magnesia, that she was most likely having reflux from literally being filled up to the top. We left with antibiotic ear drops, a new test that McDr wants done now, an EEG to check brain activity, and an already scheduled appointment for next week.


Well after a day like that guess what happened? She slept from 1-5:15 pm. It's alright though because she clearly needed it and it made her feel a bit better, as in she wasn't screaming at everything and being inconsolable. We woke her up for dinner and then off to Noelani and Shaylins soccer games. Fantastic news on that front, Shaylins team beat a very hard team and knocked them out of trophy contention and they get to move on!! She was jumping for joy and it was a fantastic game!! Noelanis team though was eliminated but that's still alright, they had a wonderful season and it's tough being 13 and playing with 18-19 year olds!


So that's the end of the pity party for now. I am still in a funk and having those ridiculous moments of crying at lame commercials and sad songs but it will pass and I will move back over into la-la land where there's nothing we cannot tackle. Tomorrow maybe, tonight I'd kill for a brownie ala mode and someone to cry with.

“Strength does not come from physical capacity. It comes from an indomitable will.”