Alex and Maddy

Alex and Maddy

Tuesday, July 14, 2009

Whew! What a weekend. We had a great weekend, but we were all exhausted!

W​e had very quiet days Sunday and Monday and we are feeling recharged.

Yesterday was lab day. I am always anxious waiting for the results and hoping nothing in the results is going to prompt a return trip to Houston. So my Monday's are full of apprehensio​n as I listen for the fax machine. Yesterday's labs were okay. Not great, not terrible. Alex had one metabolic lab that was off. My guess is that it's off because we overdid it this weekend. His liver numbers were still concerning, but that is our new norm. Other then that are labs look pretty much like always. So that's to say lots of highs and lows, but normal for Buggy!

We also had a surprise yesterday morning when Liz our OT showed up. I thought we were starting on Friday. Alex did a great job and always showers Liz with lots of kisses in between exercises.

A​lex continues to thrive on his "schoolwork". We have not started our Kindergarte​n program (or even ordered it yet), but are finishing up a program i had been working with him on as preschool. Alex is reading pretty well. he is on his 12th reader and is so proud of himself. He is also very good with the computer. I think his real talents though will be in the area of math. He just seems to "know" math. He can add without thinking about it. His little brain amazes me. Whatever deficits he will face from a physical standpoint, he more then makes up with his brain and personality.​

I had a good laugh last night. I was watching an Oprah on a little girl who was severely neglected. A leading Psychologis​t was talking about the changes and lack of development in the brain when a child is not spoken to or touched. So I turned to Theresa (our nurse) and said so is Alex what happens when you start speaking to your child the minute they're born and don't stop. (For those of you who don't know me in real life, to say I am a talker is to put it mildly).

I will end with a cute story about Buggy and the outlook he has... We are part of an organizatio​n called Starlight Great Escapes. They provide fun family activities for families of chronically ill children. I had joined about 9 months ago, but we haven't made any of the events because we have been in the hospital for all of them. Saturday night they were shutting down a pool complex just for us. So on the drive over, I figured I should prepare Alex for kids that might look different becuase of their illnesses. So we're driving and I start and tell him that this pool party is for kids like him who spend lots of time in the hospital and some may look different like have no hair or be in wheelchairs. So he interrupts me and says, " Mom, I don't know what you're talking about. I'm not sick. I just have a feeding tube." So there you have it. Alex continues to think his life is great AND normal!

Okay​, one more thing...Onc​e again I am blessed by the generosity of my father! I have spent the past 12 years with my Mom on her birthday. It is just tradition. Well this year, financially we could not afford two plane tickets for me and Buggy. So I was really sad, but resigned to the fact that there would be no July vacation to mimi's and PopPop's. So Dad calls me a week ago and tells me to go ahead and book our flights and he will meet us down at Mom's to visit for 5 days. Buggy and I are so excited to see Mimi, PopPop and Grandpa. So we will be on the road again from July 21st till Aug 5th. and then we will be heading back to Houston for outpatient appts. Do you know anyone who travels then us????

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