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Friday, October 28, 2011

Too much information at one time

Holter monitoring results back. - abnormal.  Bladder ultrasound report - bladder not emptying fully.  Both of these within the past 3 days. BTW - urologist was an ahole.  He should have been a proctologist instead.   Monday Meg sees pulmonology to discuss a cough assist due to her decrease in swallowing and excessive upper airway congestion from saliva and reflux, Tuesday is GI follow up to talk about a possible JG Tube - one in stomach and one in small intestine.  Monday is also labs at home with special PIC Line pedi nurse.  Wednesday hopefully we can get annual mito labs/screening drawn with the use of ultrasound equipment to find vein at hospital outpatient lab through radiology.  All I can think is poor Megan.    My sweet little girl put through so much.  Why her?  Why not me?  Why???????????????????????????????????????

Yesterday morning I snuggled with her on my lap in our huge Jax Sac bean bag (bought especially for the princess and the pea) and she looked at me the way she does like she knows exactly what I am saying while I asked her what she knows that I don't and if she knows how much time we have left together???  Does she wonder that?  

The highlight of our day was getting to go to Ryan's school for his classroom fall festival.  There were 5 stations set up with cookie decorating, crafts, lollipop ghosts, etc. that the kids got to rotate around at.  Ryan wanted me to bring Megan so he could make her a scary popcorn hand.  He kissed her and told her to please feel good enough to come to my class.  He was so excited that I was coming AND bringing Megan.  He said it was important since she wouldnt ever get to have her own fall festival at school like he does.   She did like it.  She was mezmerized with all the activity and kids.  So much that it took all of her energy and she fell asleep after 30 minutes and slept for the last 30 minutes of it.    I am glad I got to bring her with her big Halloween bow in her hair and her spookly shirt on - for her, for Ryan and for me.  For the memories.  My stinkerella, stinkerbell, tinky - we have so many names for her.  Flopsy Mopsy, Drooscilla(duh - cause she drools).  Little Mama, Baby Girl.  MayMay, Meggy, Mean G.  I heard that the more nicknames a person has it means the more they are loved.  I believe it is true!!!!

Wednesday, October 19, 2011

Thursday, October 13, 2011

Another round

This week has been full of more Dr. visits  with the specialists.  Thankfully we saw Dr. P who has been able to solve the mystery of Megan's swallowing issues.  Has nothing to do with decreased muscle tone - it is her allergies that have triggered her reflux and her esophagus is completely raw and red.  Go figure - the ENT figured it out.  Not the GI or the allergist/immunologist.  It all stems back to medicine - what else.  Since coming off the Ketogenic Diet some of the doctors have been wanting to prescribe liquid meds again even though I prefer the tablets and caplets.  The sugar in the liquids are allergens - corn syrups, sugar alcohols, etc - feel like such an idiot for not realizing this.  I printed every hidden name for sugar that exists and cant believe that some of them are names I would pass by.  Even on labels that say sugar free!!!! or no added sugar.  So we are back on track to heal that up.  Poor baby.  I cant imagine - like having strep throat or tonsilits and being ignored. 

Saw the immunologist too.  Good news is her immunoglobulin levels have doubled since starting the IVIG 6 months ago.  Bad news is her liver enzymes are elevated - that could mean a  multitude of things - from disease progression on the next "victim" organ, or affects of medicines - or a bad batch of immunoglobulin - there is another kid testing the same way as Megan on the same product.  In that case it would be hepatitis which would suck!  Going to wait and see though.  Not going to try and figure this out.  Just going to get the labs drawn and see what they show.

Tomorrow we are going to the pulmonologist for a follow up.  I am so over the doctor appointments already.  At least tomorrow is Friday and then there will be 2 days without a doctors office.  yay!!!

Saturday night is going to be the start of the next chapter in James' life.  He is going to homecoming with a date- in a limo -!!!!  It is a bunch of couples but here we go.  I hope he enjoys himself and realizes what great times these are for him.  I always wanted to be done with high school and onto bigger and better things.  Of course I knew everything so noone could tell me to slow down.  Wish I would have though.  I missed out on a lot.  I never went to a homecoming or prom!!  I thought they were stupid. 

Like Tim McGraw says:

I cant remember who I was back then

you do what you do and you pay for your sins
and theres no such thing as what might have been
its a waste of time
drive you out of your mind

This part of his song has always had a deep effect on me and made me think.  More so than most other things I have heard in my life so far.  It is very.......................real and true.

Sunday, October 9, 2011

Should be trying to sleep but I can't.  I left the bedroom crying.  I am afraid.  Afraid that Megan's not going to be here much longer and afraid to be without her.  I picture her in my mind and can't imagine that someday I won't be able to touch her.  It is selfish for me to be worry about that but i dont know how not to.  My chest feels like it hurts so bad just thinking about it.  I don't know why I have had this terrible feeling lately but I have cried every day lately.  In the shower, when I have a little quiet time it just comes out.  I need to find peace with these feelings because I have no say in how things will go.  It is in God's hands...and somehow I think Megan's too.  I just love her so much.  I love to see her smile at me and to kiss her little cheeks and when she talks to me with her own little language of sounds that are so playful.  I can feel how much she loves me - she doesnt have to know how to talk to convey it.  I have to find someone to talk to that knows what to tell me so I can stay strong and come through this for Pat, James and Ryan.  And me.  I just can't see MY life or my heart being seems impossible.