*i think i need a nap*

Yesterday and today have been so busy I really feel like i could just lay down and sleep the weekend away. Yesterday was Lilah's EEG at Primary Children's Hospital. I have been very nervous for this test because she had to be sleep deprived. So, the night before I had to put her to bed an hr later and wake her up 2 hrs earlier, AND NOT LET HER NAP BEFORE!!! How cruel! I think it was way harder on me than on her. She was so tired and I kept having to stimulate her to wake her up and keep her from falling asleep. If i even so much as went in the other room for less than 5 min I would come back to find her asleep and have to wake her up. She is one ornery girl when she doesn't get her sleep, just like her mom lol! So her and I managed to do this all morning and made it up to PCMC for the test. They told me it would take 2 hrs so my mom was able to meet me up there to keep me company. They first put 23 electrodes on her head with play dough type conductor stuff and paper tape then wrapped her head up in gauze. She really didn't mind any of this too much. Then they turned off the lights and let me feed her and put her to sleep, which took maybe 5 minutes.

They tested her for 27 min and then came in and without waking her up put a strobe light in her face (and i was holding her so it was in mine too) and tried to stimulate her into having a seizure. She didn't wake up much less seize. So they took everything off her head and we were on our way. It did end up from start to finish taking about 2 hrs but was a pretty easy test. So after that I thought that the upper GI today would be a breeze. I thought wrong! They said she couldn't have anything by mouth for 2 hrs prior to the test, which was no big deal. We got there and they gave me a bottle and said she had to drink about 2 oz of the barium solution (contrast material for the xray). She is really picky about her bottle nipples and wouldn't take it. I offered up one of my bottles but they had her pretty enclosed with the xray machine and mine wouldn't fit in the tiny space. So she freaked out. She just cried and cried... even more than when she got her shots and they hadnt even done anything but laid her down and tried to feed her! So they brought out the syringe and tried to feed her that way but she was crying so much she just kept spitting it out. So out came the feeding tube :( They put the feeding tube down her nose and into her stomach and pumped the barium in that way and took xrays the entire time. The radiologist said everything looked great but at the very last minute she did reflux a little bit. So she does have a VERY VERY MILD case of GE reflux and will continue on her meds for this but its not enough that would cause her to stop breathing. We will get the results on the EEG next week but as of now still no answers :(.

Because of all the drama with the feeding I got out of PCMC about 2:30 and had to be to Sandy by 3pm to sign the papers for our refinance on our house. I made it and was only 3 minutes late :) We got all the papers signed (we have been working on this since before Christmas! what a joke!) and we got in at a 4.50% interest rate which dropped from 7.75%. So in all our payments dropped $300 a month! and we are still on a 15 yr loan! I'm so excited to finally have this done! And the other good thing is our next house payment isn't due until July 1st so we get to skip a whole month, yay!!! This means we will hopefully be one step closer to getting the bedrooms re-carpeted :) Next week on Monday I take Lilah to the Physical Therapist for her torticollis (a condition where her head is tilted. Her chin points to her right shoulder, while the head tilts toward the opposite shoulder. Treatment is necessary to prevent her face and skull from growing unevenly and to prevent limited motion of the head and neck) This is a congenital problem and she was born with it. At her 2 wk visit I knew she had this but everyone kept telling me she will grow out of it, but she isnt so we have to see a PT to find out what kind of treatment she needs and if her spine is in any way involved or malformed. Then on Friday we go in for her Brain MRI which she will be put under general anesthesia. I really am hoping that one of these tests tell us something!

She really is a trooper and I'm so proud of her for enduring all these tests! I'm very happy though that she won't remember any of this when she is older! lol! Thanks for everyone's support and willingness to help us! You are all great and we love you dearly!