Wednesday, November 28, 2012

Yup, that's about it.

The Lord is my light and my salvation;
Whom shall I fear?
The Lord is the defense of my life;
Whom shall I dread?

When evildoers came upon me to devour my flesh,
My adversaries and my enemies, they stumbled and fell.

Though a host encamp against me,
My heart will not fear;
Though war arise against me
In spite of this I shall be confident.

One thing I have asked from the Lord, that I shall seek:
That I may dwell in the house of the Lord all the days of my life,
To behold the beauty of the Lord
And to meditate in His temple.

For in the day of trouble He will conceal me in His tabernacle;
In the secret place of His tent He will hide me;
He will lift me up on a rock.
And now my head will be lifted up above my enemies around me,
And I will offer in His tent sacrifices with shouts of joy;
I will sing, yes, I will sing praises to the Lord.

Hear, O Lord, when I cry with my voice,
And be gracious to me and answer me.
When You said, "Seek My face," my heart said to You
"Your face, O Lord, I shall seek." 
Do not hide Your face from me,
Do not turn Your servant away in anger;
You have been my help;
Do not abandon me nor forsake me, O God of my salvation!

Teach me Your way, O Lord,
And lead me in a level path because of my foes.
Do not deliver me over to the desire of my adversaries,
For false witnesses have risen against me,
And such as breathe out violence.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.
Wait for the Lord; Be strong and let your heart take courage;
Yes, wait for the Lord.

Psalm 27

Wednesday, November 21, 2012


Tomorrow is Thanksgiving. Although, I can't really say that it feels like Thanksgiving. But what does Thanksgiving feel like anyway? It will be nice to be with the family for sure. And I'm sure the food will be delicious. The kids will have fun and talking to adults will be enjoyable. I really do look forward to it. It just, unfortunately, feels like any other day. But maybe it won't tomorrow. Maybe I'll wake up with excitement and joy and be ready to embrace Thanksgiving. I feel, however, like it will pass by, us in the trenches... making it another day...

This is not a sad post though, or a pity one. Just honest. I'm trying to target my inner Thanksgiving and it's eluding me. 

We did do some Christmas shopping today (I know! Who speaks of Christmas before Thanksgiving????) and it was very productive. And quite fun being together as a family. Rambo was left at home with the nurse and I was welcomed home to a gaggle, literally a gaggle, of wires. Which I'm not terribly sure how she accomplishes since she leaves him in his seat 65% of the time. But somehow she does. It's so interesting how someone can be completely thorough in one area and completely obscure in another. In the end it's only wires. Who cares, right?

No, wait.. I definitely care. But I wish I didn't.

So, Happy Thanksgiving Eve, everyone! Stay safe and warm. Spend time together tomorrow. Until we meet again.....

  NaBloPoMo November 2012

Tuesday, November 20, 2012


I got the name wrong.. It was the Sainato's that blessed us with dinner not the Sainapo's. Although, I'm sure somewhere in the world the Sainapo's blessed somebody with something, I want to say thank you to the SainaTo's. We are still eating left overs :) And I won't attribute any of the blame to my mom... I think it was a phone misunderstanding. Are you happy now, mom? :) :)

Now onto today: We finally got the tests done that have been slightly evading us. Ultrasound: check. Xray: check. We do have some more lab work to do but we haven't received the paper work for it yet. This Thanksgiving break I planned is turning out to be a little busier than I expected. Less staying at home with the kids baking and relaxing and more running into town a bajillion times a day. The good news, though, is that Rambo's ultrasound looked good. His blood vessels have seemed to clear any and all clots so we can stop the blood thinner. I repeat, he will be getting no more shots twice a day! That is until he gets another blood clot and almost dies like this summer, but whatever.... Let's hope that's not the case.

I haven't heard back about the xray yet, but hopefully we will get the information we need to schedule an appointment with the orthopedist. I feel like every day I look at him stand his feet get worse and worse. But there is a bright side, kind of, to this too - Rambo is starting to move from place to place when he stands. It takes a lot of assistance but he is no longer happy to only stand in one spot. I hope he is physically capable to do as he clearly desires. He keeps amazing me.

The dog is now calling my name to walk him so I must run.

  NaBloPoMo November 2012

Monday, November 19, 2012

Shout out.

Thank you to

the Sainapo's

and to our friends at 

First Wesleyan Church.

First for the delicious Chinese food,

and for blessing us like crazy!

You seriously met a huge need 

 completely unexpectedly. 

We are more than grateful!

Also, the pumpkin bread was good :)

In other news, we had to reschedule all of Rambo's appointments for today because the nurse was late. She said there was an accident. Maybe there was. Either way, I now have all the running around to do tomorrow. Oh well. 

Dear Sainapo's, if I got your name wrong it's my mom's fault. :)

NaBloPoMo November 2012

Sunday, November 18, 2012

Will not.

*chanting* I will not miss another day. I will not miss another day. I will not miss another day. 

If I can make it through November and only miss 1 post that will be quite impressive, but seeing as how we are only half way through I'm not sure what the chances are. Anywho....

This weekend was full but nice. Family time, friend time.... And I have made the executive decision for the kids to be off school for this entire week. Thanksgiving break just got serious, yo. Tomorrow we have quite a bit of running around to do for Theodore; ultrasound, xray, prescriptions, yada yada yada. But as long as the nurse actually shows up this time (instead of calling 20 minutes AFTER she is supposed to be here asking if we can change the day. She actually thought through and manipulated an entire situation which is frustrating but pointless to get worked up about. Ugh.) we should be able to accomplish it all. And if all goes well then Rambo should end up on one less medicine (blood thinner) and have an appointment with one more doctor (orthopedist). Apparently, to see this one doc about scoliosis you have to have an xray and already know the degree of curvature to even make an appointment. Fair enough.

So that's what I will be doing tomorrow. Hopefully it will be fruitful. 

I'm trying to think of something else to say because I have the iron turned on in the other room waiting for me to press Ben's uniform pants for tomorrow and I am really unmotivated right now to do that. I suppose I could see if I could write a slightly longer run on sentence than the previous one.... that could get boring though. But it wouldn't be ironing.... Choices, choices.

Alright, I will be the good wife and do it. I mean I am like 24% of the reason Ben looks squared away at work. Or I will be if I ever get these pants done.      

     NaBloPoMo November 2012

Saturday, November 17, 2012

I know.

I know, I know, I know, I know.... I missed a day. It's true. I apologize since I'm sure I have you all raptly waiting on the edges of your chairs for the next thing I have to say. Yesterday was just busy.

Today, however, has been quite slow moving and almost relaxing. I say almost because I've been walking around in a half dead state on less than 2 hours sleep. Long story. But the good news is that I think I can get a little nap if I move fast so that's what I'm going to do. 

Have a fine Saturday, one and all!

  NaBloPoMo November 2012

Thursday, November 15, 2012


One of our nurses has gone on a mission. Every year she goes to Africa and is gone for two months. TWO MONTHS!!! Unfortunately that has left us, at least for the moment, without a nurse at least once a week. Last night was the first night. Let me tell you something: Theodore was SO good. I could not have asked for a better night. He slept completely through it. 9pm -6:30am. I still had feeds to start and stop and meds to give, but it felt so easy! 

He really is making great improvement on the lung front. He used to wake up every night and cough for at least an hour, but thankfully not anymore.

That being said, I am ready for bed tonight. Goodnight!

NaBloPoMo November 2012

Wednesday, November 14, 2012

Are you ready for this?

Sometimes I feel like this:
 ... a tree growing in a less than ideal place, trying to grow but being hindered...

 ...or like I'm hanging on by a thread...

 ...and even like I'm trapped. Like everything around me is trying it's best to weigh me down and hold me back and keep me stuck.

Lately I have just been feeling defeated. Not in an overly abundant makes me nonfunctional way, but just an underlying sense. And the thoughts 'if we just made more money' or 'had better insurance' or 'had more time' and even, ashamedly 'didn't have Theodore'.... they keep creeping up on me. 

For instance, today Rambo saw his new pediatrician. You know what he told me? That Theodore has scoliosis. I never noticed it. Nor did any of his other doctors... why? How has every single doctor missed this? How did I, even though I see him every day, miss this? Sure, I'm not the one who gives him baths and I guess inspecting his back isn't really something that happens on a regular basis. But here we are at yet another set back... quest, thang... whatever you want to call it. They just keep coming. 

So I'm trying to take a deep breath. To take it all in stride. Not to pretend like it's not happening because that will only get me into more trouble in the future. And not even trying to fight it. But when those thoughts creep in, or the frustration, or the feeling that this is never going to end I remind myself.

I remind myself that God is for me. Whether I like it or not, whether I believe it or not, whether I understand it or not. And that is the simple truth. It just is. 

  NaBloPoMo November 2012

Tuesday, November 13, 2012

That 'not quite right' stuff.

I mentioned yesterday about how that nice walk we had helped to give a fresh look, or at least a moments rest, from some things that have recently been discovered with little man. *I say recently, but in actuality I have been mentioning this for a LONG time. Just never got anyone to agree or explore it.*

His feet.

That's how he stands. Even when he was a little baby I noticed that there was no real definition between his feet and legs. It was almost like he didn't have ankles; like his legs just rolled into his feet. And for a long time, although I mentioned it, it was clearly NOT an issue to be dealt with at the time. Makes sense, lets work on keeping him alive first. But I still said something. Then as he got older I said more to more people and I still didn't get a lot of concern. But now that he has finally started standing people are saying "Hey, that's not right." Whatever... as long as it's finally being addressed. 

Our first order from the physical therapist was to try high tops to offer support to the ankles. And my mother in law just so happened to find a pair of baby high tops that same week.

Big pimpin'.

So we started him wearing those immediately. And believe it or not he didn't mind at all. And it appeared to be helping to offer his feet and ankles the support they needed. Yay! Something is helping!


The physical therapist came yesterday and said it looks to her like when he is wearing them it does indeed give him foot support but it hyper extends his knees. Great, we were only putting him in them every day. So she said to immediately stop having him wear them until we see at least our pediatrician or on orthopedist. 

It always seems to be that way with Rambo. To help one part you have to hurt another. I can just see him in full out Forest Gump leg braces. It makes me feel a little sick. Just knowing from the beginning something was wrong. Knowing that there really is only a small window of opportunity to fix things and hoping we haven't missed it. 

There is always something. Always.

And on top of that, developmentally in gross and fine motor skills he's around the 9-10 month mark. He will be 2 in 32 days. That hurts my heart. :( He's not signing, or coloring, or rolling a ball. He's not dumping things out and putting them back in, he doesn't understand cause and effect. 

I wish so much that I had more time, more resources to spend on him. More ways to be proactive and immediate. More one on one. But I don't. And I know that's just the way it is, but it doesn't make the reality of it any easier. 

We see his pediatrician tomorrow and maybe he'll know something we don't. Or maybe it's not as bad or drastic as it seems. I hope.


  NaBloPoMo November 2012

Monday, November 12, 2012

A Walk to Remember.

History was made. Our first walk together.

A wonderfully warm day in November plus bored kids and a bored momma equaled doing something new.

 It might seem trivial. Or maybe you're wondering why we've never done it before.

 And it's hard to explain except that it's just never been time.
It's not that it's too hard or inconvenient (although those do play a role certain days).

It's not that we like staying inside all of the time.
 It was just never...... possible.

 Until yesterday.

And it was fun. 

A breath of fresh air... literally. With Theodore doing so well lately we are just starting to see certain things as possible. Not easy. But possible.

And it helps to take the 'edge' off of things that aren't going quite right. 

So thank you, warm day in November, for coming. Please come again soon.

By the way, the girls wanted to match on their own. There was no mom persuasion or anything. They just decided they wanted to be twins. Thanks, Aunt Ellen and Uncle Larry, for the dresses!

***And a huge THANK YOU to our veterans. Thank you for fighting for my freedom. Thank you for going where not everyone goes. And doing what not everyone does so that everyone can enjoy.***

NaBloPoMo November 2012

Sunday, November 11, 2012



















Saturday, November 10, 2012

I always say...

What's the one thing I always say when I'm making bread?

“If thou tastest a crust of bread, thou tastest all the stars and all the heavens.”  Robert Browning

No. I don't. I actually just looked that up. Usually when I'm making bread I'm humming whatever song the kids happen to be singing, which lately has been Christmas songs for their school program. *side note: Christmas is NEXT month. I hope you all are further ahead than me in your shopping.* 

And today was no different. Jingle Bells, O Come Emmanuel and also Alanis Morissette's 'Isn't it Ironic' from a reference in last nights post. (Songs tend to stay stuck in my head for a while.) Today WAS different in the fact that it was a new recipe. 

Trust me, I followed the directions to a T and it turned out wonderfully. But you will never know because I forgot to take pictures after the loaves baked. I promise they were good. And I'm pretty proud of myself for reading the directions first and then actually following them.

Rambo also made a new friend today. Well, he has actually met this friend before and has been quite interested in him but today he reached out and touched him.

Theodore will chase you around if you have the vacuum out. The noise doesn't bother him (big surprise, as though it's ever quiet around him) nor does the size. He wants to watch you with that thing and he wants to be close. But he doesn't usually want to be THAT close. Today he went for it. Good job, buddy!

And finally, my day pretty much ended with a special treat from my girls. They prepared for me and Israel a nice treat followed by a massage.

This is a Taylor girl specialty... I guess. They just made it up today: cereal and marshmallows with syrup. It's straight from Buddy the Elf's pantry. I called it a candy trail mix. It was a little sweet. And yes, that is ice cream in the other bowl.

And to make sure we weren't thirsty after that delicious..... treat... Sierra Mist in the good glasses! Of course the fun didn't end there because I still had a massage coming. A massage complete with an array of kitchen utensils. It was..... nice. 

Be jealous.
NaBloPoMo November 2012

Friday, November 9, 2012

It's what's for dinner.

Meatloaf. But it might as well be frog legs or tongue. Because if it's anything other than pizza or tacos my kids ALWAYS say "Eeewww. I don't like that." Even if they do like it. Even if they've never had it. Even if it's just because they don't like the way it sounds. 

Lately my days have been filled with "I don't like it" or "It's not fun." or "Why didn't you get me the other thing?" (And by 'lately' I'm pretty sure I mean the last 8 years. Well, 7 anyway.) It's arguing just to argue, disagreeing just to disagree, or the always dreaded "Why?".

I guess it's called being a *gulp* kid. It's terrible!! And it makes being a mom even harder. I wish they could just accept the dinner I slave over each and every night with love and care and effort (too much?), I wish they would just accept it graciously and with thanks. Is it really too much to ask?? I mean, I do it all the time, right? Whatever is put before me I happily accept with no complaints... Yeah, right. BUT the point is that THEY should because it would be so. much. easier. 

And you know what the real kick in the pants is? When they end up saying "Hey, mom, this is good." (In reality it might actually be "this isn't too bad" but no need to get picky.) I just want to get right up in their face and say "I KNOW!!" But instead I look at them and smile and say "I'm glad you like it," knowing that tomorrow night we will encounter exactly the same thing.


On a different note, the kids bed time has been wonderful the past three nights because Ben has done it. Holler! I despise bed time. I don't want to draw it out, I don't want a routine. What I really want is for the three little ones to take themselves upstairs and fall asleep. Just like that. No mommy necessary. No books. No stories. Just give me a kiss, let's pray and off you go. *Do I sound like a horrible mother yet? I feed my kids frog legs and don't tuck them in.* I just buck against the whole 'bedtime' system. I don't know why. All I can say is "Eeewww! I don't like it."

And my kids look at me, hand me 10,000 spoons and tell me they know exactly how I feel.      

NaBloPoMo November 2012

Thursday, November 8, 2012

I didn't.

I bet you thought I forgot to post today. But I didn't. No, I just couldn't think of WHAT to post.

I haven't taken any pictures. I haven't left the house. Nothing special has been done so to speak. (Except we did try Rambo's eye patch today. It lasted all of 5 minutes... and that's counting 2 patches. This is not going to be easy.) In fact, I would be happily climbing in my bed at 8pm if I could. I seriously have no shame about having an earlier bed time than my kids. But with our night time nurses coming again at midnight instead of 10pm I'm usually falling asleep on the couch.

I wonder how several months ago my most productive time each day was between the hours of 10pm and midnight. It's crazy how life changes in so short an amount of time. Now if anything isn't done after 7 it is NOT getting done until tomorrow. 

I'm sure this is just a phase too. Maybe I need to drink more water or something. For now, I'm going to go eat some ice cream and will myself to fold another load of laundry. And probably just before the nurse gets here my second wind will hit. 


NaBloPoMo November 2012

Wednesday, November 7, 2012

Wah wah wah.

Today has been a little tiresome; but productive. We were finished school by lunchtime. Woot. This new system we have may just be working. 

So for today a silly picture.

Helping make pizza... when he's not being a pain in the butt.

NaBloPoMo November 2012

Tuesday, November 6, 2012

For ME?

It's my husband with a child on his side, myself and my mother in law walking down a long empty corridor. We turn and as soon as we do we see the entire hallway blocked by what is almost a cloud from the floor to the ceiling. It's gray and smokey-like and appears to be 'emanating' from this huge hooded being in the center. We can't make out anything except an enormous gray robe shadowing the face. 

And it calls us to come its way.

It's terrifying and soul shaking but somehow not peace stealing. So my mother in law takes the first step and I follow. And there are a few moments spent holding our breath because we don't know what's coming. Then from behind this huge shadowed creature, or maybe just from it, comes a tall beautiful black woman with braids to the floor. And she comes right up to us with all this joy and is dancing right in front of me. Arms up, spinning, smiling saying over and over again "We're breaking open the gates! We're breaking open the gates!" And I don't know what she means but I know it's good. I wish she would say more, but she really says enough. And I feel her joy.

That is the dream I had in those 12 short hours we were home with Theodore this summer. Coincidence, right? I instantly wake searching for what this could mean and minutes later Ben comes in the room and says that Theodore is going downhill.

As I stood outside his PICU room for hours later that day and the following days by his bedside I couldn't help but feel like God was saying that he was taking Theodore. And try as I might, I couldn't see it apart from that dream. It wasn't so much that Theodore was leaving me but that God, in all His glory, was coming down through those gates and getting him. And I knew it was special. And though it was HARD I committed Theodore to God, accepting His will because that dream had given me just a glimpse of His love for my child. 

And as the week passed and Rambo was still with us and finally starting to make progress I was incredibly happy. But also incredibly confused. Could God have done all this just to see if I was willing to give him up? Maybe.... but then why the dream? And then I realized.....

Maybe God was saying that He, the Lord strong and mighty, was breaking open the gates to intervene in MY life. Not to take Theodore but to be strong and mighty for ME. Maybe He had shown me a glimpse of how much He loves ME.

And I don't know how to deny a love like that.

7 Lift up your heads, O gates!
And be lifted up, O ancient doors,
that the King of glory may come in.
Who is this King of glory?
The Lord, strong and mighty,
the Lord, mighty in battle!
Lift up your heads, O gates!
And lift them up, O ancient doors,
that the King of glory may come in.
10 Who is this King of glory?
The Lord of hosts,
he is the King of glory.
I haven't thought of that dream in well over a month. It just came to me yesterday as I was driving Theodore home from an appointment. His eye appointment which left us with yet another 'thing' to do. Rambo is almost solely favoring his left eye which means we have to patch it everyday for 1-2 hours. I just sighed at the thought of one more thing to do, one more thing to make him unhappy, one more thing to remember, one more thing that is wrong with him..... 

And God gently reminded my heart that He Himself has opened the gates of communication and communion with Him. Why would I want to put up my own? Be steadfast. Remember that ALL things work together for the good of those who love Him. 

So bring it on, eye patch. You've got nothing. 
 NaBloPoMo November 2012

Monday, November 5, 2012


Yesterday was all about Ruthie's birthday.

Yes, yes, I know it's passed, but she finally got to do the ONE THING she has been asking to do for the last six months: go to Chuck E. Cheese with Uncle Eli. Why she picked him, I do not know :), but she did. And he was gracious enough to take her and the entire Taylor clan to enjoy a day just for Ruth. (Maybe that's why she picked him....)

She was not excited at all. 

Of course she was. It's literally been the only thing on her mind for months and the past week was solely a countdown to Sunday. 

So we packed up the kiddos and hit the road for some tokens, pizza, and fun.

And, boy, did they have fun.

...and fun...

                     ....and fun....

                                     ...and fun...

                                                             ...and fun.

There's more pictures up in The Fam tab if you haven't been inundated with enough yet. So, basically, Taylor family, I'm talking to you. 

Have a lovely evening, everyone. It's grilled cheese and tomato soup over here on this abnormally cold night. And don't forget to vote tomorrow! I will personally bring you a thermos of hot chocolate if you wait in the poll lines. 

Not really.

NaBloPoMo November 2012

Sunday, November 4, 2012

Daddy day.

Rambo is getting a daddy day today. I'm taking the other three to Chuck E. Cheese's for Rufio's birthday. (Only a little late). And they are counting down the minutes until we leave.

It has been a nice day so far - relaxing. I've already gotten a nap (haha, Ben!) And I'm sure these are the last few hours of calm before another week of chaos starts. But with a new plan in mind to help organize all the disorganization of EVERYTHING, I can almost say I'm looking forward to the challenge. 


   NaBloPoMo November 2012

Saturday, November 3, 2012




Pumpkin cake (trying this baking thing again).


Laundry done.

Happy kids.

Happy husband.

Happy Amanda.

Happy Saturday, everyone!

NaBloPoMo November 2012

Friday, November 2, 2012

Caution to the wind

I've decided to be more bold.

We're talking walk-around-in-the-streets-in-a-spongebob-character bold.

Write-letters-stick-them-in-the-mail-and-THEN-think-about-it bold.

Plan-to-world-dominate(or-at-least-figure-out-the-krabby-patty-recipe-at-any-cost) bold.

Answer-before-being-asked kind of bold.

Shoot-first-ask-questions-later bold.

Okay..... maybe not THAT bold.

But you may want to disregard any letters you receive in the mail.

  NaBloPoMo November 2012