Oh MAN! Day 5

*sigh*
Day 5 - (even though I missed yesterday...*shaking head*)
January 7, 2012

Today I am thankful...SO thankful... to Jenni from Portraits of Grace Photography. She blessed our family with her amazing time & talent today and we are truly grateful. In no particular order, here are some amazing photographs & people I am thankful for....







I'll continue though - because besides
#1 Jenni and her blessing our family with photography
#2 Nic, Tayla, Jacob, Cayleigh and Juliette

there is MORE...

#3 I am thankful for a God given talent of being able to make headbands as both a creative outlet and a time for me to decompress. It is not by my own hands or knowledge but by the skils He has blessed me with (which I do not deserve but do appreciate)

#4 I am thankful for my nieces. Riley (she's 2) and soon to be my new baby niece Piper (3-5 weeks away) who I am so blessed to be the aunt of. Please keep my sister Jessica lifted high in prayers for a healthy pregnancy, delivery, baby and for minimal pain and maximum healing.

#5 For my marriage. I'm thankful every day for my husband. He does so many things that I appreciate that I can't really express it because this blog post would never end - but he is truly a really great guy. I'm lucky and I don't deserve him {but you can't have him}

#6 Above all else - I am thankful for my Lord and King through whom I am able to wake each day to see my family, sleep each night safely in bed, have been forgiven all things I've done and will do {which I'm sure is ALOT} and who I will praise in worship every day of my life.{and thereafter! HALLELUJIAH!}

Day 4

Thursday, January 5, 2012

I just hesitated typing 2012 and thought to myself, "Is that right?". It is though - TWO ZERO ONE TWO. That's amazing. It seems like just last week it was 2011. *wink*

Today, I'm thankful for:

#1 I'm thankful for Cayleigh being so strong. She was on her stomach tonight and I held her head up and said "look, look around Cayleigh" and she did. So then I rolled her, side to back, back to side, and she decided to roll herself from her side to her stomach. There, she lifted her head off of the mat at least 7 times. Amazing!

#2 I'm thankful for my children learning about God's promises and for them praying, leading prayers and 'adding in' while others are praying for what they're thankful for, what they hope for, etc.

#3 I'm thankful for the dinner time question "What was your favorite part of your day?" It's a great way to connect with your children amidst an otherwise complicated, chaotic and disconnected day. (..and we all have them)

#4 I'm thankful for my husband. Every day I think he'll be on the list...no matter what I'm thankful for him. He's one of the greatest blessings that the Lord has given me

#5 I'm thankful for the creative designs that the Lord is putting in my heart for my business.

#6 I'm grateful for our night nurse, Gina, that we have during the week days. It's wonderful to have someone who is not only reliable, but also a Christian, to help take care of our daughter

Giveaway!

There is cash involved! Check out the giveaway at www.fortytoesphotography.com !

Day 3

Day 3
Wednesday, January 4, 2012

Tonight I want to share a huge accomplishment & my thanks. I worked with Cayleigh for almost a half an hour on moving her arms to reach for a toy I had hanging over her head. I rattled it, encouraged & excited her, remained silent and whispered to her and prayed & prayed & prayed. She had her hands on her tummy in her "thinking thumbs" position which is where she uses her thumbs on each hand to pull up and touch the fingers on the opposite hand. She sat like that for quite some time and even raised her right hand up just a touch every now and then. She finally dropped her arms to her side and it looked like she was about to go asleep but I touched the top of her right hand with the toy twice, still praying, and she suddenly took that arm, reached it up and got the toy! She held it on her stomach, clenched tight to her body with her little fisted hand and then moved it to a more midline position by inching it over, then reached up her left hand and touched that toy.

It was short lived before she pushed the toy off of her as she does - but it was amazing... and so, today I am thankful for:

#1 Cayleigh reaching for, and getting, her toy that I so annoyingly dangled over her face

#2 My husband, for being so extremely thoughtful ALL of the time. He is forever doing the little things (and those count the most) for both me and the kids. Today he sat with Cayleigh, playing his new Ipadish thing, while I worked to get pieces ready for a sale I plan

#3 Juliette's effort in trying to ride her bike with no training wheels today. As I ran along side her, attempting to balance her, she managed to ride for several feet quite a few times. We're not there yet, but we are certainly a LONG way from the tiny, fraile "failure to thrive" baby I had in my arms so many years ago

#4 For my chidlren using God's promises now in their prayers. I am so proud of Tayla as she leads prayers for the other kids, and then Jacob and Juliette chime in. It is a more wonderful feeling to hear my children pray than anything I can describe with just words.

#5 My marriage. On Christ the solid rock we stand, all other ground is shifting sand. I love my husband because he loves Jesus, because he TRIES, because he PRAYS, because he GOES TO CHURCH and because he is my best friend in the whole wide world (and a good kisser)

#6.....I've been waiting to post this because I wanted to add it in... I'm thankful for a MICHIGAN WOLVERINES SUGAR BOWL WIN!

Day 2

Day 2
Monday, January 3,2012

Today is a day of many blessings. I want to just list everything I can possibly think of to gives thanks for but I am afraid if I deem this list "everyhting I'm thankful for" I will somehow forget something, or someone, and there will be ill feelings. So, I'll call this my...

List of Everything That I can think of at this Moment that I'm Thankful For

#1 My Husband. Everyday I am thankful for him. Maybe because I'd prayed for him and even written a list about all of the qualities I wanted him to possess. Maybe because I had even, at one point, lost hope that I'd ever find him and yet God has brought him into my life. This is not to say that he is perfect - but he's perfect for me,and -even better than that - he loves me and my imperfectness.... and for that I am thankful.

#2 My Children. Tayla, Jacob, Juliette and Cayleigh. To say that I have been truly blessed in my life would be an understatement. I've grown because of them both physically (wrinkles, gray hairs, waistline) and spiritually. My house is never quiet (unless they are outside or sleeping), its never 100%50% clean , there is a never ending pile of laundry and sometimes I go to the bathroom and hide... BUT... my house is always full of laughter (hey,somebody is either making a joke or making fun of somebody), my house is always full of love, my children teach me to draw closer to God (for sanity, peace, patience..), my walls are never short on Crayola covered pictures, I get to attend parent teacher conferences and hear about how gifted they are and feel proud, I get to watch them Learn and Grow, I get to kiss four little foreheads each and every day and my heart is overflowing with LOVE. For them, I am thankful

#3 - Cayleigh. I know I've already covered children in my last post but this little girl has truly changed my life. Having a child with special needs is challenging. No little boy or girl dreams of one day growing up to have a child with special needs, one who is hospitalized more often than home or who cannot always reciprocate the effort you put into your relationship with them - but if I could go back and be a little girl again - I'd dream for it. Why? Because having Cayleigh, a little girl with special needs, has taught me what Unending, Selfless, TRUE Love is in it's realest sense. She may not always smile at me, she may not reach her arms out for me to pick her up or meet those 'milestones' some idiot thought up 'on time' - but she LOVES me and I LOVE HER. With all of my heart, with every ounce of my being and until the day that I die. She is my heart. Sure, it's challenging, sometimes very tiring and it'd be easy to take the road to self pity - but I won't. I don't feel sorry for myself - I feel BLESSED. The Lord blessed me with Cayleigh and He brought me to a closeness with Him that I would have never had otherwise..of that I am certain. She has taught me to be unselfish, to be patient, to be faithful and to PRAY. Every moment of every day.. because God does answer prayers. She's a testimony to that

#5 I am thankful for Contemporary Christian music. Artists like Phil Wickham, TobyMac, Mandisa, Third Day, David Crowder Band, Laura Story, Christ Tomlin, Casting Crowns, The Afters, Mary Mary, MercyMe and radio stations like KLOVE help me get through the day. The music is uplifting and truly makes a difference in my attitude every day

#6 I am thankful, above all else, for a Forgiving, Always Loving, Wonderful, Glorious, Righteous, Powerful, Sovereign, Mighty God who sent His Son to die on the cross, shed His Blood to cleanse MY sins and those of my children so that whoever should believe in Him shall not perish, but have EVERLASTING life. and for THAT- I am thankful

Day 1

Day 1
Sunday, January 1, 2012

I happened to come across a friends friends post (imagine that) on Facebook where she had written about a journal she kept every day, for the past several years, in which she kept track of her thanks to the Lord for that day. She encouraged those who woul d read her post to begin their own journal or blog in which they could keep record of their own thanks. THAT my friends is why you are reading this post.

How many of you have seen the 30 days of thanks posts that folks, like me, try to keep up with during the month of November and leading up through Thanksgiving? This is like that..but harder and more challenging. I like a challenge. Truthfully, I want to keep count of, and share, the many, many ways in which the Lord has and continues to bless my life.

Today I am thankful.....
1. For the ability to attend church when so many of our brothers and sisters in Christ overseas cannot
2. For a husband who loves me and our children
3. For Jesus promises.

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

Here and There...

Monday, October 31, 2011
Cayleigh's First Halloween {I guess}

I wasn't the biggest fan of us taking the kids around two streets tonight to collect candy from random strangers who've attempted to decorate their houses in such a way, and dress in such a way that they want to evoke fear in my children, I'll admit it. {So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10} but, we did because my "Lights on the Lawn" idea was a flop...this time. Cayleigh was a pumpkin..the cutest pumpkin you ever did see.

But this blog isn't about that because Halloween isn't something I really care about celebrating {but yes, I'll eventually put up some pictures}. Instead, I'm going to put up some videos of the most amazing little person in the entire world. {Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17}

She is amazing and I am blessed, WE are blessed, to watch her grow and thrive. I actually took a {very short} trip down memory lane last night by looking at some pictures of her from when she was first born. I only lasted about 15 minutes before I started to tear up. I touched the screen several times telling {the "then her"} her that it'd be alright, that it was okay and that I was sorry. I thought about how many times she was in the hospital and for the entire day, everyday and I just felt terrible that I couldn't be there for every second of it.

She's been through so much - she is incredible, and strong, and smart, and beautiful. You should see her... actually, here, see her. Watch her smiling, watch her following her milky and watch her {tonight} as she sleeps. I want to capture every moment so that the next time I take a trip down memory lane and look at these videos I will see only how far she has come, what a blessing she is and how much our love for her {and God's eternal mercy and favor} has helped her grow.