Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Wednesday, May 31, 2006

who needs sleep?

The answer is ME and Alivia. For some reason she has always been against sleep (James says she's just like her mommy). I am trying to work out a schedule that doesn't have her awake for hours without eating. Today she decided to go against that plan. Silly girl its for her own good. So she had a bottle around 6ish and went back to sleep for about 20 min but then woke up with a dirty diaper. I changed her and tried to get her back to sleep but no such luck. So instead we hung out..now you have to understand the chemo schedule to understand how crazy this is. She has to have an empty stomach to take it (at least 2 hours sinc eating) and then has to take the anti-nausea med and wait 30 min, then the chemo and wait an hour then eat. So this morning we had 3 and a half hours to kill before breakfast. By the time we got to eat she was ready for a nap (read CRABBY) and starving. She was so overtired that she only slept for about an hour (probably a little less). So we played and tried not to have any meltdowns (tired baby) and finally she fell back asleep at 1:50. But only slept for an hour again! So I rocked her for a while and she finally feel back asleep about 10 mins ago (its 3:45). I was going to take a nap but now I am not sure if thats a good idea..might feel worse after.

One of the things that the doctor said keeps running through my head. He said that people can live on this chemo for years. I am trying to not think about what that means for our lives but its hard not to.

This evening has been crazy and intense. Livi and I were outside so she could sit in her baby pool around 4 and by 4:45 she was really fussy and just wanted to be held. So I took her inside to get dressed and realized that she felt really hot. So I took her temp and it was 101 (which is the magic number if you hit once you are supposed to call the doc right away) so I called and while I was waiting for the nurse her temp went back down to 100.6. The doctor said to watch her and if it went back to 101 come to the emergency room. Thankfully over the next hour or so it went down to normal. But now we think it might be a tooth. She is chewing on everything and is so tired but when she lays down she always turn her head to the left and she starts to cry like it hurts. So now we have another call into the doc to see if its okay to give tylenol. We were told not to give it if there was a fever since it would mask the fever but now that the fever is gone... Its an odd feeling have to check with someone every move you make with your child.

pray requests...
...good doc visit tomorrow (fast, positive, easy)
...no more fever
...no pain from teeth (or the go ahead to give tylenol)
...that she doesn't have to live for years on chemo

Thank you
to Amy Knutsen for the great cookies (for us and the nurses!)
to April Spinetti for the yummy dinner (and so much more...love you)
cards with stickers from
Marmie (you are the most faithful card sender...she loves the one of the dog!)
Gary and Patty Smith (and family)
The Eckman family (thank you Lydia and Ruth)
Joni Cairns
Luke and Christine Smart (thanks for the offer of help if we come to Hopkins. May just take you up on that)
Sara Rankin
and the thoughtful letter from Jim and Jean McClements

If I ever forget to thank someone please except my apologies and I am really trying to get all the thanks up but somedays I loose track. Sorry


Anonymous Anonymous said...

Keep that little tootsie roll out of the 90 degree heat ;-)

Luv ya, Lisa

9:30 PM  
Anonymous Anonymous said...

Reading and praying, reading and praying.
Cathy S.

9:41 PM  
Anonymous Anonymous said...

Hey Emily, I havn't written in an awhile, but I check the blog a couple times a day and pray for you all just as much. Bailey has been sick for the last couple days and it has given me a tiny(miniscule) glimpse as to what you are going through with Livi, anyway I just wanted to tell you I am so amazed and encouraged by your strength. Your hope in God through out this whole thing, your joy, and your unending love for your baby girl is incredible!! We love you guys and hope to see you soon, give your babies(liv and james) a hug from us, Kelly, Joe, Campbell and Bailey

9:49 PM  
Anonymous Anonymous said...

We will be praying for those things!!! Poor little punky! Aks is cutting teeth right now too...it is the pits, but can't imagine trying to filter what is chemo and what is teething. I will pray for wisdom and peace for you. I am sure it can get pretty intense and stressful!
Hang in there! You are doing an amazing job!
Love, Les

9:49 PM  
Anonymous Maryann Plesnicher said...

As I read your entries, I wonder if you ever thought you would be able to endure all of this. The way that you are administering chemo and monitoring fevers,etc. is just mind boggeling. Just remember Gods promise of...this too shall pass.
God bless you for the love, devotion and the great care that you are giving your daughter. May He continue to provide your stregnth and may the Holy Spirit prove to be your best friend.
Maryann P.
PS If you can't give tylenol for teething, what about baby ora gel?

9:18 AM  
Anonymous Anonymous said...

i am thinking and praying for you.

Have a great day,
Christi B.

9:45 AM  
Anonymous Anonymous said...

Praying for you guys!!!!! I hope tonight will be a restful night! I pray that livi will heal soon. Remember to ask God for help to make it through these hard times. Have a great day in the Lord.

lots of love,

10:15 AM  
Anonymous mrs. c said...

dear emily -
your "who needs sleep?" and the "two tireds" are posted at the same time -
sending "ordinary mom blog"
your way today.

praying for you.
love, mrs. c

June 01, 2006
Two Tireds

Two men.
Two boats.
Two different kinds of tired.

I have often considered these two men sleeping in boats when I come to the end of my day and find myself exhausted. We find Jonah asleep in the boat as he tries to run from God’s will for his life.
“But Jonah had gone down into the inner part of the ship and had lain down and was fast asleep.” Jonah 1:5
I have been like Jonah, trying to take the socially acceptable “boat” away from what God has called me to in the home. Maybe it is the S.S. Blogger, or the S.S. Book, or the S.S. Target, or the S.S. Telephone. Maybe it simply laziness, or doing what I feel like doing as opposed to doing what needs to get done. Even though blogging, reading, shopping, and talking on the phone are as innocent as a boat ride in and of themselves, I know in my heart when I am using them to escape God’s will for my life. It is strangely fatiguing.

In striking similarity and contrast we see Jesus asleep in a boat.
“And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep.” (Matt 8:24)
He was tired for the opposite reason Jonah was asleep: He completely obeyed the will of His Father. I obviously can’t claim to be like Jesus here. But, by His grace, there are days when I am completely exhausted for very different reasons. I remember Douglas Wilson saying something to the effect that mothers of young children should feel tired each day, it means they’re doing their job right (does anybody have this quote?). Indeed, when I do my job (calling/ministry) over here, it is very tiring. There is nothing wrong with being really, really tired at the end of the day. It could be an indication that I am doing what God has called me to do.

But when I come to the end of my day, what brings rest to my soul is the same regardless of my performance: Jesus perfectly obeyed the Father, and His perfect obedience has been accredited to me. It is in His righteousness that I go to bed each night…not my own. Ahhh, such peace and rest is found here. The One who could say to the raging seas, “peace, be still” has said these words to my heart on my best day, and my worst. The Prince of Glory, who had no need to ever sleep or slumber, humbled Himself to be clothed in human frailty and as we see here, feel exhausted. Astounding! Why would He do this? Jesus perfectly obeyed the Father in his life, and in His death on the cross in order to save us from our sins, and bring us to God to the praise of His glory alone. Now, because of His work on my behalf, I can climb into the boat of obedience today. And when I lay my head down tonight, hopefully exhausted in the right way, I will find my rest in His work, not my own.


10:20 AM  
Anonymous tina said...

you must be so pooped! i thought i was tired when owen wouldn't sleep...but you have tons more to do and schedule and watch for. i will pray for strength...and for some sort of schedule to work out for you guys. xoxo

10:25 AM  
Blogger beth said...

i love you all so much, and am praying for you guys...
When thinking about your different prayer requests, particularly the length of time on the chemo, this verse came to mind...
"For I know the plans I have for you, declares the Lord, plans for wholeness and not for evil, to give you a future and a hope." -Jer. 29:11

12:59 PM  
Anonymous jamie said...

praying for you as you go to the doctors today. i am praying that the Lord will guard your mind from wandering down the road of thinking about next month or the next years to come. i am glad that alivia is enjoying her kiddie pool. as you know my was stolen last year and i am still not quite over it. i am missing it in this hot weather. love you-jamie

2:55 PM  
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4:21 AM  
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