Well, we made it over a month...

Not Again...
Sunday, November 20, 2011

It started at 5 am {well, at 8 am for me because Nic let me sleep in since I took the 12 am shift) with Cayleigh having thin, clear secretions spewing out of her trach. The secretions required suctioning around the clock, every few minutes or so. We mustered our way to church this morning and ended up leaving early because she was clearly coming down with something. I thought she had a cold, Nic was {I think} concerned she had something more serious. Come 2 pm and we'd had her hooked up to the pulseox {which we don't normally use during the day} and had 2 Liters of O2 flowing near her trach {which, we never use during the day. She was staying in a saturation level of between 85 and 90. We decided an hour later to up her to 3. Sat was around 92. Around 4 I gave her two different inhalation meds via nebulizer to no avail. I took her off the oxygen to change her diaper and she was around 93. That was encouraging..but of course she fluxuated.

We both decided that we were going to call the Ped to see what they suggested. On call doc said to take her to the nearby Level 2-3 hospital which wasn't too far away at only 30 minutes or so. So, we did. They got her in ER in a big old bed :( and took some blood and culutures and whatnot, even doing an xray bedside. Negative for RSV, Lungs on Xray look fine, blood levels were all great except for her sodium - which was low. They portrayed it as being 'over hydrated' where her sodium level didn't meet her blood levels. The Ped there on call came down and wasn't sure what was going on. He consulted somebody at UCSF and they decided that it wasn't due to the Strawberries we'd introduced or the 5-10ml of water we use to flush her Gtube line. They determined the sodium level is low compared to a child her age who'd been orally fed and would have already been intaking solids for awhile now. Cayleigh has only been getting breastmilk (PTL!) up until a few days ago when we introduced Vitamix super blended Strawberries with her milk via G-tube. She's been tolerating them well by the way. :)

Anyhow, they decided that she wasn't too bad off, no fever or anything and so they are keeping her tonight at Valleycare for observation. All was well when I left except that her heartrate was up 170s-180s when I left but I assume this was because she is teething {though no teeth cutting yet} and she hadn't any Tylenol since 3Pm this afternoon. So, with breastmilk in hand for my baby girl and daddy wanting to stay with her I relucantly came back home until the morning to be with the other kiddos.

Twenty minutes into my drive Nic called to say that they took her temp and its 101 and heartrate is up in the 190s. I haven't been able to get him on the phone yet but when I do I'll post an update. I think both are attributed to teething but I'm not a doctor. I'll update when I can. Going to get some sleep so I can see my girl in the morning

On the bright side.... they got her to take a paci in her mouth and she bites on it...maybe a tad bit of sucking, but she's allowing it in her mouth! sweeet!

Please pray:
Pray that Satan has no control over the life of this precious baby girl who is in the hands of the all mighty, all powerful, Lord our God Jesus Christ. That the fever be broken by His hands, that the doctors be baffled as she make a total recovery, that she be her smiley, happy, rolling her top half of her body over, wonderful self NOW.

AMAZING

Jazz Hands

Saturday, November 5th, 2011
Chuckee Cheese {Enough Said}

Today was Cayleigh's very first visit to Chuckee Cheese and she made out like a bandit thanks to her parents who {wanted to relive their childhood} got her tickets. She "won" a red squishy ball thing that will be fun to use during her therapy time. It is squishy and soft so it'll be just perfect.

Far too much money & time {nearly 5 hours} later we were headed out the door. We actually went for an entire family playdate of sorts. I made friends with a woman named Juliette who has 4 children, ages 11, 9, 2 and 1 who brings her special little girl to the same place we take Cayleigh for her physical therapy. We hit it off pretty well and have so much in common {including our faith} that we set up a playdate for our husbands and kids. It was fabulous and they were the only reason we stayed longer than our normal 2 hour adventure admist the crowd of half size, sugarspastic mini humans.

Earlier in the dsy Cayleigh and I were doing her physical therapy on her playmat and I decided to take video. You'll see how wonderfully she was doing! She needed to pull on the string attached to a lion to make music. and...boy did she! Over and over for about a half an hour. You'll also see something else that's really rad but I'll leave that for a suprise during that video.

I am also including a super fantastic video of her doing one of her FAVORITE things - playing her keyboard! That hobby started during her last UCSF Children's Hospital stay where the OT {Occupational Therapist...they're the ones who work with the hands mostly} suggested giving her toys to play with that didn't require too much of a push/tug/pull/etc and gave an instant gratification for her so she'd be motivated. The piano is the bees knees and she loves it!

Finally, I'm including some pictures of Miss Cayleighdoodle with daddy {and mommy}to commemurate her first trip to the big palace of kids AKA Chuckee Cheese. Oh, and one super cute picture of Ms Serious herself!

I hope you all get as much pleasure from all of these as I do. I can't tell you how much I look forward to each day to see what new gift God has given my child. She is truly the most amazing person in the entire world and has taught me so much about life, about unconditional love and about God. For that, I am forever grateful my sweet girl...mommy loves you <3