Oh Man

Dang.
2-21-12

It's not that I haven't had blessings {because I have}, it's just that I haven't remembered to post them. *sigh* I think I warned myself about this when I first began this blog - but here I am! So, HA! (and I say that to myself)

Today was an uneventful day outside of my waking up {dreadfully sick, finding out the day nurse we'd just hired called off that day, Nic taking care of Cayleigh & Juliette all day while I was quarantined in the bedroom, Nic getting a call from the nursing agency to find out the day nurse had quit stating it was "too hard", and then {again} Nic finishing up the night feeding the kids, getting them bathed, in bed, pj's on, our dinner made} and am now sitting here typing this. *yawn*

Today I'm thankful for...

#1 GOD - For His Mercy, Healing, Forgiveness, Provisions, Love and for being HIM!
#2 MY HUSBAND - For Being The Very Best Husband EVER
#3 MY CHILDREN - For Being My Children.. the good, the bad and the ugly.
#4 My BUSINESS - For The Possibilities and the Blessings.

That's about all this clouded head can muster up tonight. But hey, I remembered to blog and that counts for something.

1 John 4:16 "....God is love. Whoever lives in love lives in God, and God in them. "

I dropped my dinner on the floor today.

2-6-82.. err...2012

It's my birthday

So I turned the big 30 today. Whoopty Doo. I actually visualized this 'milestone' as being much more intimidating than it actually was/is. My day was filled with my husband, my children and just being a mom. It's who I am now, it's what I've been meant to do. I woke up this morning and got the oldest two kids off to school and started to pack up as I was going to be rotating with Nic staying with Cayleigh. In all honesty, and by the lack of change of clothes aside from PJs and lack of Conditioner - I in no way thought we were staying another night. Come to find out we were not only staying another night (or few) but they were going to transfer her to UCSF. So I stayed as late as I could with Julez as my sidekick and we (with Cayleigh in my lap) danced to The Gummy Bear Song, I like to Dance (Yo Gabba Gabba) and apparently Cay had worked up such a sweat that she coughed up a mess of nasty while I was holding her. You learn not to mind when the trach sprays you because it's better out than in I always say (If you've heard that line before, you know what my DVD Movie Collection consists of).

We had to leave and I made it back within 5 minutes of Jake getting out. I suprised him and Julez and he were able to get a book from the book fair at their school just like Daddy had promised him. He rode his bike home and I 'raced' him in the van, we got the mail and then went back to school because he'd left his backpack. *sigh* By then Tayla was 5 minutes to be released so I got her out and 'raced' her home too.

The kids and I went to Target together and really enjoyed our day. Got groceries and Julez muscled her way through not only unloading the cart contents onto the belt, but also putting all the bags back into the cart (inlcluding Milk and heavy Mott's juice packs), and THEN insisted on loading them into the van for me. That earned her a whopping 5 points. She was definitely pulling a "Find ways to show love and caring for another person" which is a house rule. They were all so good they pulled a Super Card and got things like "30 minutes DSI, 30 minutes TV and a Stay up 30 Minutes Late". THEN I told the kids to unload the groceries and help put them away, and that today would be Double Point Day because it's my Bday. THAT motivated them. It also motivated them that for every 3rd chore they did they'd get 3 points! If you're wondering what I mean about the Points and the Super Cards - it's all a part of the Dulik Rewards & Consequences system.

The kids need to do chores. Nic and I need sanity. So we decided to start a system where the child chooses a Chore Card (notecard pushpinned to a piece of felt on our wall) with the chore they want to do. They are to complete it without instruction or reminding and to our satisfaction and then, upon us approving the job done, they earn themselves a Point Card. It says 1 POINT with a yellow smiley face. I just printed them out on white cardstock and cut them. Used a hole punch and they each string their Point Cards onto their own rings (Binder Ring - Walmart for $2) everytime they earn one. Nic or I write their name and initial it so there is no trading, stealing, losing, etc.

A list of the family rules hangs above the felt board w/the chores on it. Next to that is the belt. They each must do one chore a day...regardless. They earn a Super Card (which they get to pick from a random deck we made) if they're going out of their way to be selfless and caring/loving. It's stuff like I mentioned earlier. As for the Points - well, they collect them all week long and then on Sunday, after church, the Family Store is open. They can 'shop' with their points. There is a key on the wall that shows a Smiley Face Sticker (in different colors) with their Point Value. Everything in our "Family Store" container is labeled with a corresponding smiley face sticker. For instance, the Pink Sticker means that item is 5 points. They can cash in or save. Goes up to 50

Tonight I was sitting on the floor while Jake played DSI (cashed in that Super Card) and started making Tayla's IPOD Valentines for her class. Theres alot of work involved and Juliette and Jake were eager to assist. Tayla even came up to help. It was just a great family project and night. Our house is clean, kids are in bed and I'm about to fall asleep just typing this - tomorrow I switch with Nic. They're keeping Cayleigh because she needs strong meds to knock out her yucky, but she has to go to UCSF or CHO because she's considered 'special needs' and the hospital she's at isn't equipped to use a ventilator if they ever needed to. (which, they wont)

So its a waiting game right now. UCSF had only 1 bed available in the PICU today (she has to be in PICU because of the amount of suctioning and care she needs) so we might do CHO - but only if we'd be in the PICU - I don't do the CHO Step Down Ped's floor. WILL. NOT. DO. IT.

My blessing are ABUDANT

#1 I am thankful for 30 years on the planet and for all Christ has taught me so far
#2 I am thankful for Jesus Christ
#3 I am thankful for His Word
#4 I am thankful for my Salvation
#5 I am thankful for my Husband
#5 I am thankful for my Children
#6 I am just plain grateful. God is GOOD

Pnuemonia

2-4-12

My baby girl had chest xrays today after battling being sick since last Saturday. Her lungs were bilaterally affected from top to bottom, right down the sternum- bacterial pnuemonia. I'm glad we took her when we did as I knew the antiobiotics she did have weren't working, and Nic and I were both right that something worse was going on. We have her home since the only thing a hospital can do that we aren't equipped to do at home is give her an iv antiobiotic course which, at this point, we don't think she will need...but still. The "H" word looms in a very tangible place that stinks so badly I can smell it in cyberspace. I DETEST the "H" place. I almost used the "H" word - but God is love, and that is the place some people go to get better, right?

She's on inhaled steroid, antibiotic, two inhaled breathing treatments and is currently on her trach collar & oxygen at 100% 5 liters through it. *sigh* I'm glad we have our pulseoximeter - I wouldn't be able to sleep if I didn't know her sat. (Sat definiton: Saturation Level. Level of oxygen saturation in ones blood)
Terms you learn along the way. Nic and I are a walking medical terminology dictionary. Heck (see I'm so frazzled I almost typed the double hockey sticks word) we are usually having to not only SPELL her 'diagnosises' (PLURAL) to doctors, we often have to 'remind' them what they are. *sigh again*

I'm feeling weak in spirit I think only because I'm frustrated and I feel like there is this unending mountain we're climbing up when we - SHE- should only have to be sitting in a sled, enjoying the ride down. STUPID mountain

Blessings

#1 My baby is home with me right now

#2 The my once girly nursery/bedroom is now Cayleigh's at-home hospital room equipped with a couch to sleep on, her medical supplies , machines, medicines,and so forth and so we can take care of our girl

#3 That my HUSBAND is by my side! I don't know how many times I read of marriages or relationships being broken by medical problems with children, or with adults for that matter. I fully believe that the Lord has put him by my side because he is strong when I am not, he knows what I'm thinking and because he's the man God intended for me to be with.

#4 My children. I am SO BLESSED to have four beautiful children. I know that they are a gift from God and I WILL NEVER take them for granted. I know unconditional, true love because of Christ's wisdom shown to my through my daughter, my sweet and precious Cayleigh. If you're ever stressed out because your baby is crying - stop and realize your BLESSINGS.

#5 To have a home to sleep in, warm beds for my children, food to eat and God's LOVE and WORD to comfort and nourish me.

I am so thankful but I am so tired. My hope rests in Him, and I continue to pray and trust and believe that the Lord will HEAL my baby.

Oh man!

2-3-12

Looks like I've gone and forgot to post again for a few days. Well, at least I'm here now right? :)

We've been still taking care of our Cayleigh, though the doctor says it isnt anything contagious and we're giving her inhaled steroids and antibiotics. She's doing much better off the trach collar though (and without the O2) to where she is sat'ing around 91 ish. Keep our fighter in your prayers!

I'm thankful for.....


#1 A husband who (I like to believe) adores me and who I adore

#2 Children who are excited about the newly implemented Rewards & Consequences System - specifically our "Family Store"

#3 My new baby niece (I just said "I before E except after C") Piper, who was born on the 1st and has a TON of hair. She's just the smallest most precious little angel ever. Plus, she's got the new baby smell.

#4 The Word of God. *sigh* It freshens my soul, opens my eyes and permeates in my mind, body and soul. God is Good

#5 Jesus. Because He Is.

#6 My family and friends. I don't think I say it enough - how very fortunate I feel to have such a great group of people to be around.

and for that, I am thankful