Hello, Society. We're Back. Ish.

It’s been a busy few weeks.  Aida & I spent the week before last at Grandmommy & Grandpa’s, managing to visit friends nearby, family not as nearby (but at the zoo!), take the customary pumpkin pictures (in the mountains no less :) and do a few projects around their new house.  Also, Aida cut her first tooth. She’s tough and all, but geeze…I’m not excited about doing that over and over.  Mark said he hoped we enjoyed the week-long trip because it wasn’t happening again.  :) We tried to Facetime with him one night, but it FREAKED Aida out.  It was funny for us, sad for him & possibly traumatic for her.  She could see him & hear him, but he was NOT there. WHAT WAS HAPPENING?!?!? Anyway, we flew home on Monday, I started my new job on Tuesday, went to clinic on Wednesday and was been trying to catch up and keep up before a day at church and then “work”…also at church.  :)

Clinic last week involved our bi-weekly chemo treatment (30 second injection into her line) + 2 hours to see the doctor, sit around & wait.  Her numbers continue to be good, so everyone continues to be thrilled.  In fact, pending confirmation from imaging, we were scheduled for chemo in FOUR weeks - not two.  Very good news. Our doctor was giddy.  After clinic, we went downstairs to radiology for ultrasounds of her liver & brain.  The fontanel is closing in, but for now they can still see the lesion from there.  Before too long an MRI will be required.  It’s just as well though since she’ll need one to see the lesions on the bones anyway. She ended up having an x-ray of her belly as well to check the location of the PICC line that runs from her leg to her heart-ish area.  She grows, but the line doesn’t, so we have to be sure the medicine is still getting where we want it to go. Apparently it’s fine because until this moment I didn’t think about the fact that no one said anything about it afterward. 

What they DID say was that the lesions are “stable” with “no change to slight decrease in size.”  I take that to mean the change, if there is any, is so small it’s impossible to tell precisely on a squirmy, sometimes screaming, tired baby.  I would have loved for them to say, “Look at that.  They’re gone,” all nonchalant-like.  They didn’t, but I’ll take “stable” any day of the week. All that to say………we are now on a MONTHLY chemo regimen. AMAZING.  In the mean time, Aida is in the middle of her post-chemo cruddy feeling (only like a 3 or 4 out of 10). But then there’s the teething, so who can tell. Also, we’ve been trying new (real) foods, which has been entertaining.  Today she had avocado.  Sort of.  She spewed most of it back out of her mouth before gagging.  Last night we tried banana (because she likes banana baby food), but she gagged.  In said post-chemo cruddy feeling the gagging made her spit up.  It was pretty funny.  Well, it was funny to me since she was sitting on Mark instead of me, and she was no worse for the wear.  Just think…this time next month we’ll be saying, “Oh, yeah.  I forgot what these few days were like. This is lame.”  Because it will have been SO LONG AGO.  We still have to go to clinic every two weeks to get the dressing on her leg changed, but that’s no big deal.  She hates it but not because it hurts.  It’s more a “LET ME GO! LET ME GO! LET ME GO!” sort of situation than an “OWWWWWW!!!!” It only takes five minutes.

I’d like to pause here to say “kudos” to the PICC line for being so fantastic, infection free & long-lasting.  Gold star, PICC line.  Gold star. We will not miss you when you are gone…which could be only a matter of months.  Lord willing and the creek don’t rise.  Actually, the creek can rise a bit if it wants to.  When the PICC line is gone Aida can finally just “swim” in the creek.  More importantly, she’ll get to have her first REAL bath! Oh! I should also mention we’re heading to Cincinnati in a few weeks to visit our awesome doctors there and have the MRI to see the bone lesions.  I can’t wait for them to see how UH-MAZING she is doing.

I’m already getting long, so maybe another day I’ll write a little more about the miraculous, new job.  It really is going to be great.  Before starting I felt like I was going down a slide, knowing it was the right direction, trying to slow myself with my feet and hands like a little kid.  After all, sometimes a slide is fast and fun and you land on your feet.  Other times you get all static-y or get slide burn or bust your butt at the bottom.  So far, it’s been really amazing.  Parts of it feel very familiar, and other parts - like the MacBook - feel very new.  I’m an iPad, iPhone wannabe user, but the real deal is going to take me a little time. I’ve already researched shortcut keys and had to Google a lot of basic things, but I’m getting the hang of it.  The most troubling part for now is definitely the challenge of getting 6 hours a day in at home.  Here’s hoping we’re in a good rhythm soon. 

And now just for fun…A friend of mine met Aida for the first time while we were in SC, and Aida got all excited - panting like a dog.  I’m serious.  She pants like a dog – tongue and all.  Anyway, my friend said, “That’s not in the blog.”  So now it is.  Also, for your viewing pleasure because I can’t wait any longer…meet Batgirl.  Nananananananana Nananananananana Batgirl!

I’m off…struggling to keep my eyes open at 9:15p.  Photo essay coming very soon!  Please continue to pray for our family and our little miracle.  It will still be a while before these bad boys are gone, and though the risks/consequences are less serious compared to our previous worries, they can still cause problems. Please continue to pray for all of us in this transition time for me.  I wasn’t exercising before, but now I’m REALLY not exercising. :) Ha! Playtime with Aida may need to involve lunges & sit ups with her strapped to my chest. And as always, among all the other usual stuff, pray for continued provision.  God has been amazing thus far, and we continue to live by faith. Thank you to those who are sacrificing on our behalf.  You are all unbelievable.  We will pay it forward one day…or possibly pay it “back,” I guess, if that were the way the cookie crumbled.  :) Know that we seek God for wisdom in our finances and work hard to be good stewards of what He has given us. Thanks also to those who encourage endlessly and to those who have never met us but are praying anyway.  Amazing. We love and appreciate you all.

The News

I've been doing some writing but haven't finished anything because I've been a little distracted. :) I'm going to be traveling this week, and the day after I return, I start my new part time job! It suddenly feels like summer is ending. I'm trying to cross out all the projects on my to do list before everything changes! It's a miraculous arrangement really. I'll be working for our church - primarily from home. I'll spend Tuesdays at the office on a regular basis to start. A mom friend will be keeping Aida at the house for us which is amazing. Ultimately, I'll be having lunches and other meetings, but Aida should be able to come with me for many of those, I hope. She is an incredibly good baby (knock on wood), so she's easy to take along. 

I'm probably disproportionately worried about the changes. Six hours a day four days a week (plus Sundays), three of which are at home, somehow feels like the dream life I've been leading is ending. It's not, of course, but I'm freaking out a bit. We couldn't get a much better set up, but like I said, it feels like summer is over. That said, we're very grateful. Last time I wrote I mentioned having a meltdown then God showing Himself over and over.  One of those showings came in the form of an email from someone at the church asking if I might be interested in a position they had available. Just days before I had blubbered on the phone to Mom about not knowing what the next step was. I didn't have any idea. This time though, I didn't have to know. It just appeared. That almost never happens. 

So the change is here. Aida will be just fine and will hardly know the difference, so please pray for ME :) Aida is doing well (though not yet sleeping through the night. :) I was hoping to have had imaging this past week, but it isn't scheduled for another week and a half. THEN - assuming all is well, and we're pretty sure it is - we will be able to space chemo a bit farther apart. For now, her numbers are pretty good. They bounce around a bit, but it seems only one drops at a time, comes back up then another drops. More importantly, the drops are still in normal range for the most part. It's hard not to be a little concerned when watching so closely like we do, but we've been in pretty good shape for a while. Praying that continues! And seriously, pray for me in the transition. I'm not TOTALLY freaking out. I'm just mostly freaking out. 

And coming soon...I'm finally working on something of a photo essay. I've been pretty good lately about not wanting/needing to hide the exposed tumors when we're out, but I haven't really been ready to "publish" them. Of course, on occasions when the little tumor on her toe has been visible, I've felt badly for unsuspecting people who don't know how to react to the (basic) answer of what they felt was a simple question...and felt annoyed as Mark was given recommendations for alternative therapy to the chemo poison we're giving her. :) I'm sure they all mean well. Anyway, many of the people who have met Aida have seen her in all her glory, and I know that many who know her story are curious. Somehow it feels better in person, but we'll never see all of you in person. :) Besides, at this point there is a progression to see which I'm anxious to share. So! This week when I have access to a computer that moves faster than a snail's pace, I'll get it put together. 

Until then, time to get to work on that to do list!

Oh Me Of Fickle Faith

Notes:

I have recently begun to fear that English buffs have been reading my posts in horror. I apologize in advance for the disastrous grammar.  I used to be better, I think.  Generally, I’m just trying to communicate my pauses and emphasis by ignoring the rules, but all those other troublesome spots are a result of the rules turning to mush in my otherwise occupied brain.  Instead of researching like I used to do, I just guess…or pretend it it’s all correct.  I really do care.  Don’t worry.  When I write a book, I’ll have an editor.  (We will fight.)

As for the length, if you’ll think of it not as a blog post but a really short short story, we’ll be golden.

Until now, I have been writing posts from iPad making it difficult to include pictures.  Sorry about that! I realize everyone doesn't see Instagram & Facebook, so I'll try to do better.  ENJOY!



 

Aida the Needtobreathe Fan

My last post was nearly 4 weeks ago, and I've been thinking a lot about what it is I should be writing. Obviously, an update on Aida is required, but good news of good news is that the update is shortish. And this time around, I'm STARTING with the update! Aida turned 6 months old 2 weeks ago. Since then, she has gotten her ears pierced, taken her first flight (even setting off the metal detector leading to a pat down of us both), and now SADLY gotten her first cold. From me. She is almost over it and was generally less whiny about it than I was; but to be fair, she gets to sleep without interruption..... 



Aida's 6 Month "Photo Shoot"

Anyway, we're still on a bi-weekly chemo schedule which is wonderful. We can hardly wait for even more time in between treatments!  She handles it incredibly well, but it takes about a week for her to totally be herself again.  Even still, the reaction to chemo is easy in comparison to life on steroids! Her counts today were good, and imaging of the brain & liver lesions is being scheduled for our next visit in 2 weeks.  I'm still watching the lesions more closely than I'd like...noticing the subtlest of changes. We've recently discovered that the walls of blood vessels in these vascular tumors can get inflamed which makes the lesions look bigger.  I guess technically they are bigger, but for the most part that seems to recede, returning them to their former glory. 

Aida & Mommy

There HAS been some growth though, which is always a bummer. Also, maybe from the growth or the inflammation or both, one of the lesions on her arm is actually causing pain intermittently which is pretty unusual. It was irritated for several days a couple of weeks ago, and alas, the pain/swelling/inflammation returned yesterday. :( If we touch it with even the slightest pressure she instantly cries big tears. Fortunately, quick hugs and kisses make her forget almost immediately. After freaking out a bit the first time, our Cincy doctor calmed me via text, and the situation improved on its own. Speaking of Cincy, we're talking about a trip that way (just to check in), but gratefully, we're not really in a rush! :) 

And now, after weeks of writing pages and pages of pure brilliance (I promise) in my head (but not on paper/iPad), I'm finally getting it together. Another day I'll write about how procrastination - sometimes out of a need for things to be just so - makes it impossible to succeed. That is to say that the inability to narrow down exactly what to write makes it impossible to complete a blog post. I've just spent 30 minutes writing this paragraph. I am not exaggerating. It's ridiculous. On to what matters...

The last couple of days Johnny Cash's "Folsom Prison Blues" has been popping in my head, but I've been inadvertently changing the lyric. Well, just one word really. I had sung the first few lines several times before I realized my version wasn't making sense. "I hear the change (train) a comin'. It's rollin' 'round the bend..." For those of you taking notes, this is what we call a "Freudian slip." Change IS coming. I am not ready yet. Having had our lives suddenly turned upside down 6 months ago, it's a little odd to be anticipating this still undefined transition. I hear the change/train coming, but I haven't seen it yet. It sounds awfully big and scary - like it could just flatten your little old penny right there on the track. For the first time in a while, I am experiencing some semblance of calm. Even better, this calm is coupled with unadulterated delight, and who wants to change that? Aside from a completely healthy Aida (and perhaps a modest windfall), I can hardly imagine something better…well, maaaaaybe a family trip to Europe with chocolate covered strawberries for dessert at every meal.  That’d be pretty okay.

Anyway, I've always wanted to stay at home and be Supermom. You can imagine the look I got from my freshman advisor in college when I told her. Seventeen year old me liked to think she was lonely and jealous of my idealistic "ambition." OBVIOUSLY I would work first, so the degree was necessary. As was foreign study, of course. Regardless, stay at home supermomdom has always been a dream. So here I am now at home...making head bands and leg warmers. Living the dream...more or less. The thing is, we knew before Aida came that I would need to generate income on some level because it turns out Supermommying does not actually pay in dollars. Monopoly money maybe, but we don't have Monopoly so I can't speak to that definitively. It's truly unfortunate for mommies (and kiddos) everywhere.

So with this in mind, last weekend I had a momentary meltdown. I was fretting over “finances.” Again. I was "pre-worrying" as Mom calls it. Despite an undeniably miraculous 6 months, I quickly reverted to my usual feeling that I am "justified" in my lack of faith in this area. After our leap of faith move to Nashville, our Dave Ramsey inspired financial plan disintegrated. There was little financial peace for a long time. Instead, we came away with war wounds. We truly believed God orchestrated the move (most days anyway), but it was difficult to reconcile our obedience with what felt like an absence of provision. As I write this I am suddenly aware of my absurdity. Did I really just say I feel "justified" in my lack of faith? Yikes. It's true that faith is too present a theme in scripture to even pretend it's not a struggle for pretty much everyone in some way. It's human nature. But then so is sin. And human nature can be a freaking mess.

It's not that I doubt He can. Sometimes I just doubt He will. In fact, I know that sometimes He doesn't. I still can't really understand it, and that's okay (she said convincing herself). On their way into a fiery furnace Shadrach, Meshach & Abednego said "He can, but even if He doesn't...it's cool." I, on the other hand, tend to say "He can, but if He doesn't...Hey! I'm on fire here! Does nobody care I'm on fire?  I. AM. ON. FIRE. FI. YER. Burning! Dying! Anyone? (That means You, God.) No? Fantastic.” (Cue big sigh and eye roll followed shortly thereafter by sobbing.) Fortunately for us, this time He "did." Relief came the very next day. And again the next. And the next. I told a friend that God had his eyebrows raised saying "Yyyyyyyyep. ‘You know the plans I have for you’ and what not. Seriously.  You really should know. No, really. You should know." Oh me of fickle faith.

So now what?

I have no idea. 

In the meantime, please...

Pray for continued provision. 

Pray for a clear path and opportunity. 

Pray for peace in the transition. In fact, go ahead and pray whatever you were praying when things were crazy bad and we were inexplicably calm. That was a good one! ;)

Pray for Aida's continued progress. 

Pray for Mark as he is still working super hard...and still taking care of Aida and me. :) I couldn't ask for a better partner. Two weeks from today we celebrate our 8th anniversary. Go team!

Pray for this beautiful, amazingly happy, laid back baby to SLEEP THROUGH THE NIGHT ALREADY!!!

Aida's First Flight

Thank you for the continued prayers and support. We need it!

With so much love

Oh My Darlin' Aida Bec

I never intend to write long essays when I start these posts, but that's how it usually goes.  So for those of you who could live without the pure pearls of wisdom I'm sharing, jump to the final 3 paragraphs for the nuts and bolts. I know...the final THREE. How many paragraphs are there??? If it makes you feel any better, it takes me an embarassingly long time to write, re-read, edit, re-read, edit, re-read, edit... Honest. I'm editing.

I was reading a friend's blog yesterday about the day his daughter was born, and it felt like a movie script...sort of the way all those fairy tales feel once you've experienced real life. It was a lovely story, and I'm terribly glad they have it to tell. Of course, our story reads a little differently. Aida is almost 6 months old now, and miraculously peace, grace, gratitude and the like have been winning out over worry, confusion and desperation since she came - 4.5 weeks early. But just for a moment today, as I read the story of broken water, epidurals and family, I felt a little short changed or jealous or some other selfish emotion I can't articulate. To be fair, my water did break in the middle of the night - all dramatic like - and I had an epidural (or two plus a spinal) and my family did come. I had all those normal things. I also happened to have the previous afternoon's notice that little else about this event would  be so delightfully normal.

I've said before that finding out Aida had troubles before she was born (albeit a day before) was a blessing, and it was. We had been in touch with family, went to the right hospital, knew to alert the doctors, etc...all very significant advantages. Since this is how we lived it, I can't imagine getting the difficult news after a painful delivery instead. Perhaps that's worse. Again, I am grateful. Still, how nice would it have been to not have the somber grey clouding her grand entrance? A little more "Yay! She's here!" and a little less "Here's the update..." 

I read my friend's post as the evening news anchor talked in the background about a sick little girl in the area. I think I stopped to listen probably because I have a sick little girl too. In that moment of selfish longing for a simpler, happier Aida story, the news lady described this little girl's condition...incurable. I cried. My baby girl still has a lot of healing to do, but whatever it is she has is responding to something...she's improving - slowly but surely. Her dramatic entry was not what one hopes for. The first few months were extremely difficult, but it is getting better. She is getting better. She will be better . (Amen and amen!) I find myself humbled and broken by the things we haven't had to endure. God has been good.

It's been suggested to me that I gather my writings so that someone else might somehow be encouraged by our story. I imagine there are people out there that could be, but I hesitate when I consider the families I've seen in recent months who aren't facing such good prognoses. They've been fighting for years not months. Their children's lives, and their own for that matter, will never be normal. We are so blessed that top of mind today is getting her to sleep through the night not whether she'll be here for Christmas. The unknowns are still there. The unattractive and the unseen tumors are still there, but I keep remembering, praying, claiming "His grace is sufficient." It has been sufficient for us. It must be sufficient for all those families as well.

I am happy to report that she is doing well. We opted to leave the central line in that has been so successful up until now and are at peace with that decision. We're hoping/expecting it can stay in for the duration of chemo. And there is good news on that front as well. Her numbers yesterday were good after the week off, so after getting chemo yesterday, she's off for another two weeks. :) This makes Mommy and Daddy (and everyone else) very happy. She will probably continue the bi-weekly regimen for another 6 - 8 weeks until it is time to image again (looking at the lesions on the brain and liver). If she has continued to improve to that point, chemo will be spaced to every 3 weeks, but that's a while from now.  

During our recent two week break, she finally saw her pediatrician and was given immunizations which, apparently, is now safe to do. She wasn't thrilled about it the next day, but it is definitely big picture good news. We also saw an ophthalmologist who said there were no lesions hiding in/on/around her eyes.  Other than all that good news ;), things are stable. The big (and small), ugly masses don't appear to be improving noticeably. Only time will tell if these will go away or if she'll require more surgeries down the road. I'm getting tired of looking at and scrutinizing them for growth or change, so I'm anxious for fall to arrive with its pants and sleeves weather.  Also, football, changing leaves, and the general romance of the season will be welcome. :)

Finally, I hope you are celebrating with us about all this good news. You are all a part of her story...our story. Please continue to pray. 

Pray the lesions disappear... and quickly!

Pray that rest will come soon for this tired mommy. 

Pray for provision and for opportunities for me to be a part of that...like NOW.

Pray for Mark (Daddy) who has been working long hours to provide then spending his weekends helping to relieve me. (Of course, that means hanging with Aida!) His work can be stressful and there is no end in sight to the extra heavy workload. While this is undoubtedly a blessing financially, it is taxing physically, mentally and emotionally. 

Pray for Mark and me as we are finally looking for the time to break free and go wild and crazy...like out on a date to Outback or some such nonsense. A date! What an idea!

Pray the next post won't be so long. God is a God of miracles. ;)

With so much love...

Over The River And Through The Woods

It seems I have inadvertently made downplaying important events in my life a noble pursuit. If I get praise, judgment, attention or even compassion I want to know they're warranted. Let the facts speak for themselves, I say. Understated is the new black. The problem, I'm learning, is that I sometimes forget or diminish the facts after having successfully NOT embellished them. Recently, while praying with/for our family, my great uncle thanked God that Aida was alive. He thanked Him that we know she will live - that we are now seeing what we were believing for before we knew. I can only liken my reflexive response to such comments to that of listening to someone sing off key. My teeth clinch, eyes squint ever so slightly, and I try to just breathe through it without giving myself away. Talking life or death just seems so dramatic. She's doing so well.

It just took a second for God to remind me. It's only been a few months since we discussed her living in the hospital because she was getting transfusions every day and needing them more and more frequently. And I can clearly remember the doctor telling us they were going to "throw everything at her" because they didn't know what else to do. They said if we tried liver surgery she "wouldn't make it off the table." I calmly but seriously considered whether I should be pursuing life insurance for her...did it exist? If it did, would she even be eligible? I talked with Mom about Hannah and Samuel...then Abraham and Isaac. My parents, brothers, sisters-in-law and brand new nephew came to visit...not really because she was at death's door but because she could be at any time.

I don't even know how to express the grace we feel for being where we are today. I see and hear stories all the time that don't progress like ours has, and my heart breaks for those families. I pray they experience Grace, Mercy and Love like we have...regardless of our outcome or theirs. I pray I don't so easily forget where we were only MONTHS ago. I'm not feeling ready for a tattoo or anything drastic just yet, but apparently I need a reminder. Still, I'm grateful that she's so well that sometimes, for a moment, we CAN forget. What miracles.

And we continue to hear good news. GREAT news really. Yesterday they imaged the lesions on her brain and liver. BOTH are smaller. They're still large. They're still on her brain and liver...but they are SMALLER. Next week we'll be skipping chemo altogether as she moves into a bi-weekly regimen. We'll visit an ophthalmologist, though her eyes seem to be just fine. We'll also see her good, old fashioned pediatrician. Woohoo! Also, we had a developmental screening today, and she's doing great. She's probably a tiny bit behind average in an area or two but not to any degree of concern.  And since she's been off steroids she is picking up the pace, so she'll be good to go in no time!

We do have some decisions to make and would appreciate your prayers for guidance. First, doctors here want to remove the central line she's had in her leg the last 5 months. It has made her life of blood draws, transfusions and drugs much more tolerable than it would have been otherwise. It works exceptionally well and has remained free of infection...truly amazing. Still, the risk of infection with it in is still high, so now that she's bigger, they want to  replace it with a surgically implanted port. It's routine and safer in the long run. She could even have a real, live, sitting-in-the-water bath! The question is, how long will she really need it if we're working to get off chemo? Would it be worth it? There's no way to tell. Second, there's discussion about immunizations.  She's not had any because of the steroids and other drugs, but since she's finally off steroids, it may be possible. After all, NOT being immunized carries risk as well. We just don't want her to actually get the mumps (or whatever) because we're trying to prevent them, if that makes sense. For now, the doctors are still discussing, but it will be up to us soon enough. 

I'm wrapping up. I promise. And I now sound like my pastor dad. Speaking of Dad...Aida and I made our first non-medical trip last week...to the grandparents' house! Aida travelled well and entertained even better. I told them the threat level has been lowered, but we're still being careful; so we're sorry we didn't get to have everyone over for a meet and greet. :) Soon, we hope!  And FINALLY...because we are settling in to our new normal, the time is coming for me to find a way to bring home some bacon bits. God's provision has blown us away so far, and we continue to trust Him. In the event that the much needed and appreciated monetary donations are not his long term plan, I will be looking of some part time, from home, not 9-5 work. If you know of some, please pass it along. If not, please pray for opportunities and continued provision. I'm not planning to spend my day with online surveys, but I'm not above data entry or stuffing envelopes! And I'm always happy to organize...whatever. :)

Thanks for reading, keeping up, giving, supporting and praying!

We Have A Baby

True story. A few days ago, I walked passed Aida sleeping in her crib and honestly paused to think, "We have a baby." It has been undeniably real for almost 5 months now, but this time, there was the pause. This time, as I watched her sleep with her butt pushed up in the air, I felt the happy gravity of it all. We've been loving every minute of her smiles, funny faces and even her strength, but not so all of the sudden, we found ourselves feeling borderline normal for a minute. 

She had her last dose of steroids on Friday. There were a couple of days when I was worried about the withdrawal and her body's abilities, but in no time, she began to improve. I say "I" was worried because, apparently, Mark had more faith. As for the test she was to have, the doctor changed his mind, I guess. He does that.  Ultimately, he said if she wasn't symptomatic, there was no need to test for now. Anyway, we've been "big picture" encouraged for several weeks now, but this week has been better for the day to day. As I write this, I can hear her talking to herself on the monitor...in her crib...where she goes to sleep by herself. Like I said, it's not so all of the sudden, and we certainly have a long way to go. At least NOW we can talk about sleep training instead of worrying that she's starving because of steroids. She's definitely not starving. She could probably live on the fat in her double chin/neck for a while anyway. 

There really isn't much medical news. Her numbers were really good except that she's slightly anemic. (She's been this same sort of slightly anemic for several weeks so no big worry.) Soon, we'll be spacing out her chemo treatments to every other week...and ultimately quitting it altogether! As exciting as that is, it's a little scary. We're still seeing growth here and there, but it's gradual which is positive. Mark reassures me that the tumors are just at different places in their life cycles - some improving and some that have been stable now beginning to grow. After all, growing is what these things do. Now all we have to worry about is heat rash and hairlessness, right? Incidentally, her hair is growing ever so subtly. Thanks to our steroid free status, we are now to peach fuzz. She'll probably be bald 'til she's two regardless, but now we'll know she's coming by it honestly.  

All in all, there's much good news and much left to do. Today, though, the gratitude and hope outweigh the uncertainty and worry. 

No News Isn't Always Good News...

But in this case it is. :) We've just been plugging along. DRAMA-LESS. Numbers last week and this week have been good, and her incisions are healing well. She's playing a lot more and has started talking. Also, the tumors that were removed a couple of weeks ago seem to indicate that these ARE a type that go away. Very good news!  Of course, the story changes all the time, but we're hopeful this is IT. 

Aida seems to be feeling like her old self - good days and bad. Mostly good-ish. All that should improve as well as we finish steroids and are able to stretch chemo to every other week. So here's your chance to pray for a miracle that will amaze the doctors. Aida will have her last (we pray) dose of steroids on Friday. We'll then have a few days before a test that will determine whether or not her body can make its own steroids. She has been taking steroids SINCE BIRTH, so her adrenal system has never had to work for it. If it doesn't make sufficient steroids, she'll have to take a different kind of steroid to help jump start her system. But wouldn't it be amazing, exciting, fantastic, MIRACULOUS if she didn't have to have any help? Yes. Yes, it would. Please pray that her body will work like it is intended to! Once she gets over the steroid hurdles, we can begin the biweekly chemo. That will be amazing for so many reasons! 

Also, we'll be starting the process of getting TN Early Intervention involved. They'll help us to identify and work on any areas of developmental delay. I'm actually excited to get started. We don't think she's terribly behind (maybe not at all in some areas), but she has missed some weeks of life with hospital visits, surgeries and so on. :) I just like the idea of having a plan!

And finally, while she IS eating less each time, Aida is still eating every 3-4 hours. Sigh. Tired. In general. Tired of being tired. Tired of whining about being tired. Going to sleep now while I can.  Zzzzzzzzzzz. Oh, and of course thank you for continuing to pray for total healing, peace, rest, financial provision, wisdom...Did I mention I was.....Zzzzzzzzzzz.....