My happy boy is back!

Ahhh- 3 day treatment almost done and I have one happy little guy now:) He is walking like crazy!!!!!!!Wish I could have caught this a lot sooner--but glad he is feeling better:) I need to get creative with his diet now....no dairy or bananas. He is so picky w/textures and won't eat crunchy or chewy things--my funny boy;) His belly is back to normal. He was so bloated, but I didn't notice because it was gradual--thought he was finally gaining weight:( I love that he is happy and playful again!!!! I just LOVE this kid!!! And my Tyler and Noah:) I'm sooo very blessed:)

We went to the GI and got X-rays of Ryder's tummy. He is very, very constipated and blocked up (way up high):( My poor baby. He's been fussing and screaming when having bm's for over a week--but soft bm's everyday. He has been waking up every night and not able to be comforted. His ped. told us not to worry unless the bm's were hard. I called the GI after watching him in so much pain the next day. Since he is hypotonic (weak trunk muscles) the GI feels his colon is weak too. He will be flushed out the next 3 days and then take medicine daily to help him:(

tummy troubles

The GI had some answers for me today. Because Ryder is hypotonic (has weak core muscles) his colon/intestines are most likely weak as well. He is probably constipated and in pain from a blockage. He has regular, soft bm's daily, but the doctor doesn't think he is getting it all out and it continues to block up. We are going for an X-Ray and some laxatives tomorrow. He feels this is why Ryder is waking up at 4am and not eating as much because he feels full and is in pain:( His therapies were rough today. He is struggling this week:( Hopefully we can get his tummy back on track and help him get back on track.

On a positive note--Ryder is now signing more please (together) and hat:)

Frustrated, Sad, Confused--I don’t know!

This is a down week for Ryder. I just don’t understand how leukodystrophy can cause these up and down patterns I’m seeing in Ryder. It seems like its 2 weeks up 1 week down. I just don’t understand how his brain is working like this??? He is in such pain having a BM the last several weeks. I called the doctor about it, but they feel its just gas because he is still having soft BMs. I watched him tonight and he was just screaming in pain while having a bm. Its been at least a month---daily of this pain. I’m not sure what is going on. I’m going to call the GI tomorrow.

Today Ry seemed so weak. He wouldn’t hold his hands up for us to pick him up. He’s been waking up at 4 a.m. screaming and not easily comforted.  He continues to cough/choke when he eats and drinks. This all sucks so much!!!

I am the child who cannot talk.

I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.

I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.