Rambo's Rampages...

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 gr acious to me and answer me. When You said, "S

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'

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

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. :)   

*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) a

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!  

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!

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 re

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 o

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. Finally. 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. T

I AM A VOICE OF  ONE CRYING IN THE WILDERNESS 'MAKE STRAIGHT THE WAY OF THE LORD.'  

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

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, righ

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 c

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.

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

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

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.  Almost.   

Oatmeal. Bread. Pumpkin cake (trying this baking thing again). Soup. Laundry done. Happy kids. Happy husband. Happy Amanda. Happy Saturday, everyone!

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.