Saturday, January 30, 2010

A long week...

For my followers I want to start with an apology. I have neglected my blog since mid afternoon on Wednesday. I have been away from home since then unexpectedly. My 10 year old daughter Katie is considered "medically fragile". This is a bit misleading though because she is a super tough and super resilliant kiddo. She has alot of different complications from her underlying birth defect of Spina Bifida. She has a more severe defect then many children with this disability. She has pretty severe brain damage from some shunt malfunctions and subsequent shunt infections when she was under a year old. She doesnt have any true verbal language. She does make cooing sounds and a few sounds that she uses to represent the things that matter the most to her. She has a trach and a g-tube. She is on multiple seizure meds. She has cerebral palsey also from the infections when she was young.

Katie and I on Christmas morning. This is how she always is, bright and sunny.

This is Katie getting a stuffed bear on from her Great Aunt sheshe for christmas. Not that big a deal right? Except she has been inseperable from it ever since. It is in bed with her here at the hospital right now.

She also has one of the greatest attitudes I have ever known. She smiles constantly and loves everyone. Her giggle is infectious, *she will block her trach with her chin and giggle, its truly life altering to see her joy*. She is patient, and tolerant, and determined when she makes her mind up. She lets you know when she has had enough and be warned if you cross her after that! She is feisty and funny and sweet and adorable. She is my little angel.

Anyhoo that is a bit about her. Which brings me to where we are. She was having some trouble this last week with keeping her heart rate and oxygen saturations up at night. So we ended up leaving Maine at about 6pm on wednesday night to drive her to Boston. So we packed Katie up, which is an endeavor in itself, and got her all comfy in the car, and headed off to the gas station. About half way there, my van, also known as the "money pit on wheels", decided it wanted to over heat. I wish I could have told you how annoyed I was. I have sunk so much $$ into this thing in the last year. We take great care of it, and how does it repay us? It chews through tires and over heats at the worst possible time!!! Luckily, my moms car is big enough to carry all of Katie's gear and us. So we called and she of course immediately swapped out for us. So we unpacked my van, and repacked Mom's van, and off we went. Arriving at Boston Children's at around 11:30 pm. The only way to be admitted when you get there after clinic hours is by the Emergency Dept. They knew we were coming, so it was not a long wait to be seen. However it was still  6am before they finished admitting her and got her to her room. So at this point, neither Tyler and I have slept since approximately that same time the day before, and we are attempting to get Katie hunkered down and ready for testing galore. Finally at about 11 that moring we are able to attempt to get some sleep, in her room together on the one person bed/couch thingy. We managed to get entangled together in a way where we didnt either fall off. a miracle in my mind considering he is six foot three and I am well, not a small mammal lol. Slept for about two hours then proceded to wait, and wait and wait, for different tests and scans. She has, of course, played possum with the heart rate and sats since we got here. She has been perfect with those. Her tests were basically lots of scans, ct's, xrays, MRI these are the big ones, the scary ones, the ones that would have meant really big surgeries, with gods grace, all came back as stable and ok....phew. So now we are waiting for the test she is having now. Which is an eeg (electro-encephalogram). She is going to be monitored with this for 48 hours in hopes of capturing one of the episodes. So alot of sitting and waiting and still wondering.

So anyhoo. This is why I have been so inattentive. I apologize again. My contest is ending tomm!! I cant believe it! Hopefully I can get my hubby to email me my spread sheet with everyones names and entries on it, so I can pull from a hat. Maybe i will try and get Katie to do it. Although knowing her she will just grab the hat and dump the contents lol.

Hubby also told me that my party pack from Loreal came. I am so excited to host my first product party! He said there is so much make up its nuts. Not to mention coupons. I will keep you all updated to my plans for this party. Hope everyone is well.

Also since I showed her off I should do the rest of the family too huh?

This is Angel my oldest Cat. Ninja sleeping under the tree.

This is Julia the day after our wedding at the coast. 

Another picture of Angel.

This is Julia and a lol catz worthy picture of our cat Singey who seems to have inserted herself in the photo.

 We call this cat "bathroom cat" because she basically lives in our bathroom. Her real name is Savannah. Not sure where the obssession with the bathroom started. She just loves it in there lol.

Singey in the christmas tree. I didnt have the heart to tell her the camoflage didnt work and we could indeed see her.

This is my DH Tyler and our baby girl Sadie. She is 4 months old now! She is probubly about 10bs bigger then she was in this picture. The Vet says she has gained 20 lbs this last month! He thinks she will be over 80lbs!
 Good organic dog food + lots of love =

 gigantic puppy of awesomeness! lol


1 comment:

  1. Hi Sarah! Good to hear from you. Never apologize for putting your family first! I hope you get the answers you're looking for in Boston.