2010 February » Terra Talking

The anniversary of me.

Feb 262010

8 years ago today was the last day I walked around as just me.

How could I have known then all that becoming a mommy would do to me, would mean to me, would change me?

I sat in my little office trying to ignore the discomfort of the escalating pains building in muscles I didn’t think still existed. Focused on getting all my work done because somehow i just “knew”, without really knowing, that life was going to change in the next 24 hours. I drove home happily blaring songs on my radio, in my cool cherry red jeep grand cherokee. I watched a television show that I wanted to watch. I ate ice cream for dinner just because that’s what I felt like eating. I didn’t sleep a wink because the “cramps” (aka to the experienced mother as “contractions”) were getting so bad.

I walked into the room we had so lovingly prepared, still not knowing if my baby was a boy or a girl, and touched all the adorable teeny tiny little things that were for this squirmy painful thing inside my hugely expanded belly. I remember spending two hours doing my hair that morning. I don’t remember why it took so long, nor why it was so gol-danged important that I had to do it, but oh the luxury!

And that was pretty much the last time in the past 8 years, that I have HAD such a luxury! That evening I became a mommy. I found out what it was to have a part of you forever torn from your heart and walking around on this earth, open to any injury or wound from careless words, horrible viruses, and idiotic people. I became who i really am today. Of course I didn’t know then that I would possess the strength to endure four long painful labors (ok three long ones, and one crazy quick one), that i would have the endurance to go weeks on end with next to no real sleep while my babies adjusted to life outside the protection of my womb, the patience to teach a wriggly little human being how to eat, and how to sit up, and how to use the toilet and how to tie their shoes and how to do somersaults and how to color with the outside shading and how to write their name.

i had no idea of all that I had inside of me on this day 8 years ago.

I thought it was just a baby. Possibly a kitten. But pretty sure a baby.

And i ended up finding out it was so much more.

Sometimes I miss that girl I was before February 27, 2002. I miss the carefreeness of being able to have my schedule affect me and only me. I miss the fact that my hips used to be in the original position that God put them in. I REALLY miss being able to fit into normal sized bras/jeans/etc. I miss a number on the scale that I am unlikely to ever see again in this lifetime. I miss the brain cells/capacity for memory that i had. But i still catch glimpses of her every now and then.

when we turn on crazy hannah montana songs and dance around together, me and my baby girls, while we are cleaning up 387 polly pocket pieces and ground-in pop tart.

when we sometimes have ice cream for dinner, just because that’s all we feel like eating.

when i see my little girls laugh so hard they throw their heads back and let loose an obnoxiously loud fit of contagious laughter.

when i see my baby girl hitching up her jeans from falling off her too skinny little body and hoist her backpack onto her thin little shoulders (sad, she’ll never have the shoulders for most dresses…), and board a bus that has held some scary moment for her in the past all by herself.

when I see the determination in the eyes of my littlest brave toaster, setting her mind to figuring out how to make her muscles work together to get over to that toy she so badly wants to play with.

when i see them all together – loving each other, helping each other, sticking together on the nites when it’s been a long hard week and everyone is tired – i see how far I have come.

So today I’ll raise a glass (of McD’s coke – some things never change) – to me. To celebrate the me that once was, and the me that i have become. And to all the moms out there, who never realized just how much becoming a mom would change you, and yet are making the changes every day.

bottoms up.

Terra

always somethin’

Uncategorized 1 Response »

Feb 242010

I tell you – it is always somethin’ around here.

I will try to do a real update tomorrow, or very soon.

Between last week’s ER visit for the hives (me), Kendall’s random day of violent retching/body trying to digest her tube on Saturday, and another day in the ER for stupid abdominal pains of unknown etiology (me again), it has just been a week around here.

Besides realizing that I have a serious love of the narcotic medicine Dilaudid, nothing spectacular has come of any of our random medical issues. Luckily – everything else has been smooth sailing.

So after I try to sleep tonite (because the half a glass of hot chocolate i tried to consume two hours ago is still causing me enough pain to swear off hot chocolate for at least a year) – i will attempt to do a real update.

Thank you so much for all of you who are praying continually for us.

ONE of these days – i will have not updated simply because our life is so boring it would bore me to tears to write about it.

keep on keepin’ on.

terra

some mothers get something more

Mommy Moments, Random Musings 4 Responses »

Feb 142010

(A friend posted this on her FB a few days back, and in reading it, I was moved to tears. Some days I am able to just go about life with Kendall as if its all totally normal, and other days I am overwhelmed. I know that I do not go on without the grace and strength of my Lord Jesus Christ, and the support and help and love and gallons of milk and cans of coke and fun little gift cards and notes from all of you. so thank you. And because I am sure I will be yelled at without this – GO GET YOUR KLEENEX!!!)

Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that
are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small,suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles
through the contents and pulls out an inhaler.

As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more.

You’re a wonder.

So today, on this day of love, I post this in honor of all the beautiful moms I know of Special Needs Children. To all the moms who have guided me on my journey through the maze of therapy, adaptive equipment, tube craziness, med changes, specialists’ lingo and the emotional chaos of adapting day by day. To all the moms who have helped me become the mom I am today – my own mommy, my grandma(s), my mother-in-law, my mommy friends, and just my own good buddies who have been there through all the ups and downs. Call this a “hallmark holiday” if you will – but I KNOW what it’s really about.

It’s about getting a chance to celebrate the fact that LOVE is what gets you through the tough times, and rejoices with you in the really good ones.

I love you all.

happy hearts day.

2Tower

Kendall, uber boring No Responses »

Feb 132010

This is mostly just an “as info” post for me to be able to refer back to as needed about kendall’s {first} hospital stay of ‘10. I had to laugh at myself because I was looking through my calendar yesterday and noticed that under “goals for the month”, I had written: Keep Kendall out of the hospital!

HA! I wrote that in January! I guess I was thinking that since she had gone in last year at this time, making it through February without a stay would be a good push forward. Not thinking that this is clearly smack in the middle of RSV season, spring is still weeks away, and I have really no reason to believe that she is completely out of the woods with all of her “issues”. But it did make me laugh. Guess that’s a nice checkmark in the “epic fail” category for this month’s goals!

Anyways – the decision to admit Kendall came because we do feel like there is no hard evidence that oral antibiotics are really being absorbed and/or utilized in her system. We see a SLIGHT improvement the first day she starts on them, but that is mostly with regard to her gut function. Antibiotics do tend to speed things up on a GI front – and she, with her typically very SLOW moving gut, actually benefits from this for a day or two. But as far as getting any kind of improvement on the respiratory symptoms that we typically need to put her on antibiotics for? Slim to none.

So given how long this current illness has drawn out, and the realization that it could easily be another few very long weeks of worsening respiratory function, it was not too hard to decide to go on up to the floor for some IV fluids, IV antibiotics, and IV steroids. The good stuff! It was actually a very quick process to get admitted up there (it typically takes a couple hours, and then at least an hour or so to wait for a bed). The new Tower rooms (new addition to the hospital that they were building last February when we were there!) – are very nice, much bigger, much more modern and workable for families. We were RIGHT outside the main entrance and by the nurses’ station – so it was a little bit loud for my liking – but its kind of just loud period in a hospital.

As is our usual custom – I tell the nurses where kendall’s best line sites are, and request that they take her to the procedure room while i go ten floors up and get a snack while they are putting her IV in. It is never a pretty process. This time, in spite of how hydrated i thought she was, they still bring her back to me with CLEAR signs that she has been screaming her head off for a good half hour, with bandages in four other spots besides where the IV is taped up and housed with “no-no’s”, and tell me “yeah, we had a little bit of a hard time getting a line started!” Ya think? Like I couldn’t have guessed that from the other 4 blown sites! Anyways – bottom line is, they got one started. I didn’t hold out much hope for it – it was at the top of her foot right where it connects to her ankle, and she wanted nothing but to stand up in that crib, putting lots of pressure on the “needle” part of the IV.

But we got her started on some good Rocephin (ceftriaxone), Clindamycin, and Solumedrol (methylprednisone). She was on a pretty good loading dose of all of these, which did serve to make her a TEENSY bit wired the first nite (she got about 3 hours total of sleep from Thursday afternoon till Friday evening) – but they seemed to start making a drastic difference in her wheeziness and liquidy breathing. There was WAY too much drama that first nite over her feeds. The residents like to pretend like they are real doctors who can handle any emergency, but in reality, they are underlings sent there to carry out the orders of the Attendings. The Attendings are who are running the show for most of the kids on the floor. Attendings are direct admitting their kids with specific orders most of the time, whereas residents get to supervise kids who get admitted from their pediatrician or from the ER. Dr. A is Kendall’s attending doctor. He knows us, he knows her, and he knows what needs to happen. So he writes orders for Kendall to get her J-feeds as necessary, at a slow rate. I hand the residents Kendall’s protocol letter for her MMA – which confuses the snot out of them. “But she’s not in metabolic crisis right now! We can’t follow this!!!!” Ok people, use your JUDGEMENT. She has an IV, start fluids. Don’t start the insulin if she isn’t hyperglycemic, don’t start the bicarb if her numbers look fine. It seriously took me till midnite to get them to understand that feeding her was OK with all of us. Then started the drama with the fact that they don’t have kendall’s formula, and why couldn’t we try a different kind, and what if they just sent a security guard to walgreen’s to get some more and are you SURE you don’t have any more that we could use tonite?

So frustrating. They NEVER have her right formula, I always have to call our HHC and beg them to make an after hours delivery so I can feed my child. Anyways – we had 8 ounces of formula, so we gave her that, and decided on pedialyte as a good alternative until the formula could be delivered. So much drama over something so stupid –because we had orders ready for IV dextrose as needed AND we were talking about 2-3 hours of no food at that point at max. Bottom line was – she would be fine if they would just make a decision and start her on SOMETHING. I hate how it’s never simple there. I swear they can act like she is the ONLY kid on the floor with a feeding pump and medical formula.

Anyways – Friday she was still pretty wired from now not sleeping and eating about half what she normally eats. I had to go down to Karissa’s party at school for Valentine’s day, and to shower and pack for the rest of our unknown length of stay. Continued improvement, some napping, but overall good stuff. Friday nite Ben and I switched shifts again, and of course he is no sooner out the door then i notice a huge crazy rash on kendall’s whole leg, and creeping rash on the other leg. No one can figure it out, and everyone just wants to go to bed, but no, we have to call the residents in again. They come up with the BRILLIANT plan to “watch it to see if it spreads, but its probably just contact dermatitis, and since she has had apneas, we can’t give her benadryl, so we just have to hope it goes away on its own”. Excellent. We’ll watch it, thanks. And by the way she is wearing her own clothes from home which have been washed in the same detergent for the past 15 months, so contact dermatitis isn’t really a viable option at this point, but fine we’ll go with that.

We finally get her settled down for the nite, or so i thought, when nurse comes in to prep her for another round of antibiotics, and discovers that the IV is blown. But instead of just making this call on her own, she calls another nurse in to confirm this. They continue to flush the line with saline, which isn’t really going into her veins as much as its just leaking everywhere – and about 4 ounces worth of flushes later, they realize they need to replace the IV. So at 1 am we get everything set back up for an IV change. By 2 she is set with a new IV, we finally have some cortisone cream for the “rash” on her legs, and we are all ready to just get some sleep. It was a long nite!

SAturday morning, Dr. A comes in and says we are going to be good to go within a few hours! We talked about why we needed to have IV abx/steroids at this point, and if that would ever improve, whether or not he felt that IVIG would help some of these recurrent pneumonias/infections, why was she having apneas, and what we could DO about it all. He basically said he doesn’t KNOW what the answers are, because we can’t say for certain which way her system will go with the underlying metabolic issues. He’d like to HOPE that she will grow out of it as her system matures, but then says that other things point to that not necessarily being a sure thing. He can say that he is almost positive her apneas (stop breathing spells) are obstructive in nature, most likely from reflux. He said that at this point her asthma is definitely being aggravated from all the reflux, but that going back on her meds won’t really help it. It was a confusing conversation – in that he knows there’s a problem, but doesn’t really know what or how to help it. I felt very…frustrated. Not so much at him, or even at the situation right then and there – but just by this constant presence of “yes there’s a problem, no, this isn’t normal, no we have no idea what to do about it other than treat symptoms as they crop up”. It frustrates me that we have been tossing around this IVIG thing for MONTHS now, and yet no one has taken the bull by the horns and ruled this in or out as a good option for kendall. No one can say for sure that she has not HAD seizures in the past or will definitely NOT have another seizure if we try to immunize her again. And why is she still refluxing this bad that it causes her to not breathe well at nite? and why does her heart have to work so hard to keep her oxygenation up? and at what point do we worry about the crazy things her heart does do? And why can’t we ever just get an IV started easy peasy rice and cheezy in her? And WHAT IS GOING TO HAPPEN TO MY BABY!?!?!?!?!

But clearly no one has those answers. And probably never will. So we just adjust to it. Stop asking so many questions and just accept each day with whatever it brings – good or bad.

On our way out of the hospital, while waiting for discharge paperwork, kendall proceeded to throw up an entire bottle’s worth of formula, mixed with blood and mucus. I just about had a meltdown of frustration. She should NOT be able to vomit like that!!! And why was there blood in it? But the residents and the nurses were all too happy to get us out there – she challenges what they know of how babies are supposed to be and act when they are sick, so with a few simple explanations (oh – yeah, the blood is just from how hard she has to work to vomit, and the reason she vomited is because she swallowed a bunch of mucus, yeah that’s it have a great weekend!!!!), we were on our way.

I was glad to be out of there in such a short time, and yet – I feel like we almost have more questions than answers now. And I didn’t expect to get “answers” per se, but I certainly didn’t expect to have MORe questions now!

The bottom line is that while we weren’t advised to take her NPO (nil per oral, not eating by mouth) again, they did tell us to pretty severely restrict the amount of food she is taking by mouth, especially before bedtimes. Feed her in a carseat, or make her eat sitting up only, and make sure she doesn’t lay down for a half hour after meals. In essence – all the advice they give you when you have a 3 month old baby who has reflux. Not quite sure why we’re still here with a 15 month old…but that’s where the questions come in.

so we are home, and she is sleeping well in her own bed, and the abx and steroids seem to be helping a TON. She is happy and bright eyed again. I don’t feel like I am on high alert level anymore. She gets about a fourth of what she was getting before by bottle/mouth. But she is sleeping without alarms. And breathing without coughing. For the first time since the first week of December! I am so happy that she seems to be GOOD, really and truly good for the first time in so long!

And now to just have her hold on to this goodness till we get through the rest of winter!

i am sorry the end of this post doesn’t make a whole ton of sense – i clearly should have stopped typing about an hour ago and just gone to bed!

I have a whole lot more to type and say though – but not for this post.

Sorry it was pretty rambly. hopefully it will still make sense to me someday when i need to refer back to it.

peace out, my homies.

t-crest

Home sweet home.

Kendall No Responses »

Feb 112010

Really – do you even realize how wonderful of a place home is until you are away from it for a few days? That familiar smell of the fabric softener when you open the garage door, the way my pillowcase smells, ben’s shampoo in the bathroom. How very comfortable it is to sleep in a bed, with a real pillow made of cotton instead of plastic hypoallergenic material.

I thank God that this was a short stay for Kendall. For those who are not aware, let’s see if i can catch you all up. I should have blogged more last week. Or at all – but who’s counting, really? Anyways – so starting last Sunday, Kendall started showing signs of getting either this same cold/virusy thing BACK that she has fought since December, or a new one, that looked eerily similar to what we’d been dealing with. Sounded similar too – with the real junky liquidy breathing, increased nite coughing, puffy eyes, and the crazy amounts of snot pouring out of her face. She did her sleep all day, and all nite, gig on Sunday and Monday, and her therapist on Tuesday even put in her notes “Kendall was extremely tired during her session today”. By Tuesday afternoon I had just a weird feeling – like something was making me feel like my alert level should be heightened, but it wasn’t anything specific that I could put my finger on. I tried to convince myself it was just because of next week’s “anniversary” of going into the hospital and kind of starting this crazy medical journey we’ve been on. But the feeling would just not go away. Wednesday was a somewhat busy day, and we didn’t come home from our running around till 6:30 pm. I put Kendall immediately to bed at that time with her pulse ox monitor on, feeling relieved that we had made it in to the chiropractor and that maybe now Kendall’s body would have more ability to fight off this junk she was dealing with.

Kendall’s pulse ox alarms started going off about 8 that nite, and continued to alarm at least once an hour right up until I went to bed around 11:30. Sometimes she alarms because her O2 “sats” are dropping – meaning the saturation level of oxygen in her blood has dropped to a level we don’t want to see (low 90’s is what her pulm doesn’t want her to get down to), and sometimes it alarms because her heart is working a little too hard to KEEP those sats up. This is actually an appropriate response to have, and isn’t so much an “alarm-worthy” event, except when her heart is working that hard for most of the nite. The alarms aren’t there so much to tell us that something is going way wrong as much as to tell us that something is happening that we should keep our eye on. So when I started hearing a lot more alarms than usual (typically I might get one or two a nite that resolve themselves within a minute or two), I admit that my already heightened alarm level was close to being raised ANOTHER level! For her first few alarms after I went to bed, i was getting up and going in and watching the monitors, and I could hear her breathing from the doorway with all her congestion, so I’d just keep my eye on her to see what she was doing. They were mostly all kind of “combo” alarms, where her sats were in the low 90’s, with a pretty high HR to pull her back up. She would kind of pick herself back up within a couple minutes, and while she was breathing a little faster than I would have expected for nite time, I was pretty sure it was just due to all the congestion. Her body seemed to be doing all the right things to handle the hardness of breathing she was working through. So by 4 am when I heard yet ANOTHER alarm, I thought, ok, she’ll pull out of it. But it kept alarming, much longer than any of the others typically alarm for. I went to her room, saw the numbers and went into full out panic mode. She was at 77 for her o2 sat, with a HR of 65. Her normal is 97% o2 sat with a HR in the 110-120 range. This alarm was for a BAD reason. I went over to her, could not hear her breathing like I had all nite, could not FEEL her back moving (indicating she was breathing), and she was freezing cold. I started patting her back and calling her name thinking she maybe just needed to wake up and take a big breath, but that wasn’t helping, so I flipped her over and she was just a rag doll. I was whacking her on her chest, rubbing her sternum, calling her name, praying for the numbers to jump back up, trying to slap her cheeks a little – ANYTHING to get her to wake up, to breathe, to bring those numbers up and make the alarms stop. I have no idea how i made it through those few minutes which felt like forever but was probably only 2-3 minutes. I somehow thought to try squeezing her toenail beds with my fingernails (clearly I watched way too much “ER”), and I am not even sure that that is right thing to do – but it worked along with everything else, and she took a big gasp inhale and I could tell she was awake. It still took a few more minutes to get the alarms to stop going off and bring her numbers back up to an acceptable range, so I just held her up for a few minutes until i knew she was kind of over the hump. I about took her monitor off and put it on myself because I am SURE my own heartrate was well into the 200’s!!! i was just so panicked because i didn’t know if i should leave her and go call 911, and Ben wasn’t here so I couldn’t call him and it just seemed like I needed to stay with her. It scared me pretty badly. I think I only went back to sleep after that out of sheer exhaustion – but I was up again within an hour for more alarms. none as bad as that 4 am one though. Once i thought the offices would be open, i started calling her team. Complex Care was the first to call me back (since we had already had a phone call set up anyways about some of the HR issues I had already been seeing and her tube site looking so nasty) – and her NP (nurse practitioner) suggested that I call her pulmo (Dr. A) to get his thoughts. So I talked with Margie the nurse at his office and she seemed relatively alarmed at the numbers also and said i would probably need to bring her in. Of course a few hours removed, and seeing her up and smiling and happy to be eating her cereals, I thought, ok maybe I am over-reacting. Hearing both of those nurses be as concerned as they were was a definite reality check. I was NOT looking forward to having go up to LG (the hospital), but if Dr. A did want to see her, of course i would, crazy as it is to have to find arrangements for karissa, kaylen and then both girls after school. And sure enough, the call comes back less than a half hour later – she needs to come in.

Ben was somehow able to rearrange some meetings and drive from milwaukee to meet us at the appt, and thank God that he was. We get there and go to check in and the receptionist tells us we need to go immediately to radiology for a CXR (chest x-ray). Seriously. I could probably set up a CXR by myself in my sleep by now this kid has had so many of these. Strap her in to high chair, wrap her with wide velcro strap, wrap her with lead apron, get my lead apron on, hold her hands above her head without her dislocating her shoulder (this is not easy given her unstable large joints and her absolute Rain-Man-ness about being touched or pinned down against her will), wait till she takes a big inhale after holding her breath screaming, take picture. Turn big chair sideways and repeat.

From that moment on she started to get more and more and more wheezy and junky and I am just beating her chest and back trying to get her to cough up SOME of this junk because I know if Dr. A hears all that it’s a one way ticket to the floor. And clearly that was all to no avail because when he comes in and examines her and we go over all that has happened since our last visit for pneumonia three weeks ago – he says “well, she’s a very borderline situation. My preference would be to admit (except he says it like this – aD-meet) her, but I will leave it up to you. We can try to continue treating this at home, but i will be honest, we are looking at at least a few more weeks of this. Or we can put her in for a few days, get her full of IV antibiotics and steroids, and start to beat this sooner than later. But i will give you a few minutes to think about it.” i looked at Ben and he says “put her in. It’s time to just get her the help she needs and get her OVER this thing already”. So at least the decision wasn’t really ever in my hands. I hated having to be in that position. It truly could not have come at a worse time. Friday I had to be the room mom for Karissa’s Valentines Party, Saturday was the girls’ first big all day dance competition, and Sunday we had a big meeting at church that I still had about 4924 things left to do on.

But I think it was the right decision to make. I knew I could not take another event like Wednesday nite again. I knew that I had been on “orange alert” for a reason, and that this was my chance to calm down a little, try to get a hold of what is going on with her.

So in record time, we were heading up to the NEW peds floor – I made Dr. A request a tower room for us. It’s the little things in life, you know? Fancy new rooms, with cool disco lights, TONS of space for all the pumps and crap we have to have for kendall (because God forbid they put the IV pump on the same pole as the feeding pump, and don’t forget the pulse ox machine) – we used to trip over ourselves in the old rooms. Although I will say they were a little quieter. And a LOT easier to ummmm….smuggle contraband items into. If you know my penchant for kleptomania of medical items, you’ll know what means! But it was nice to have a view of real life out the window, and to know that we weren’t there for a long drawn out stay with no answers. It’s still not fun to have to be inpatient at all, but at least this time was kind of on OUR terms, not some crazy out of control medical situation which no one knows how to handle or calm down.

So that’s what happened on Thursday. I’ll post about the actual stay itself in another post.

peace out.

Quick Update

Uncategorized 2 Responses »

Feb 052010

They just took Kendall back – Ben went with her to deal with the pain/screaming/flailing because I just didn’t feel up to it today. I can’t see that look in her eyes today as they try to hold her still to insert a long thin tube through her stoma and down into her intestines. So Ben will be the strong one while I sit out here and work my own intestines into knots over hoping that she doesn’t freak out too badly.

Will update more when we know more!

Hugs from a Jug

Mommy Moments, Random Musings 2 Responses »

Feb 032010

of milk that is.

Yesterday afternoon I had a virtual milk parade on my front porch.

My fridge went from nearly empty – to nearly overflowing. That could be because Kaylen helped me put things away so everything is crammed onto the one shelf she can reach…but who’s counting, really? FIVE gallons of milk we have now. FIVE. Just in case you ever wonder if God really does hear your prayers – He does. So be careful what you are really and truly seeking. Because yesterday morning my prayer was – God please just let me be able to go get some milk today. And it’s not that I couldn’t have afforded a gallon or two of just milk. I don’t want you all to think we are completely destitute! But the thought of dragging them all out to the store with Kaylen fighting yet another crappy coughy cold, Kendall who is constantly in one therapy or another OR recuperating with a nap from all the therapy, dealing with the coats and the cold and all that – for just some milk? Yeah – it was THAT overwhelming.

So just to show me that not only could He provide the gallon of milk I need, but above and beyond what I could ask for – He sent five gallons. From a few different people. And cheese sticks. And Coke. And lasagna. And so many other good things that I do’nt even know how to put it into words except PRAISE GOD from whom ALL blessings flow! And with the blessings were also flowing my tears – so very touched by the generosity poured out upon us by so many of you.

and it was as if each and every one of those gallons of milk was like a great big huge HUG from God – reminding me that He does indeed care about the tiny AND large details of our lives. It may not always SEEM so, but that doesn’t make it less true. He cares about us. All of us. You, me, our babies, our husbands, our parents…he loves each of us so much. I don’t know WHY He chose to bless us like He did last nite. I do not feel very much worthy of it any more than so many others I know. I cannot fathom how or why He does what He does. But I can be grateful. And humbled. And I am.

And I think that’s about all I can say about that right now. Thank you seems so inadequate, as I so often feel in the face of generosity like this. And yet, to those of you who were the hands and feet of God yesterday with all that you brought to fill up our fridge – I hope you hear how very very very thankful I am for what you have done. It was more than just food for the bellies of my babies, it was food for our very soul. I wish I would have taken a picture of the girls’ eyes when they came home from their dance class to see all the milk we had in the fridge (and the coke!) – and I was able to tell them – GOD will always take care of us. He does it in little ways and He does it in big ways. And we prayed and thanked God for all the people who had helped us with our milk, and prayed for people who needed milk still. And it restored some much needed “spring” to the winter of my soul – the part of me that was just too worn out to even form coherent prayers for all that is on my heart and mind these days. That’s the kind of thing you just cannot put a price tag on. Restoring hope. And faith.

So thank you. For the big hugs that came in jugs. And for the prayers that keep us going just as much as food does. And for just being here to read about the craziness of our days.

Raisin’ a can (of nice cold coke!) to all my homies –

God’s hands

Mommy Moments, Random Musings 3 Responses »

Feb 022010

I’m going to be pretty honest with you all today – and probably with myself too if I think about it.

But today I am just kind of hanging on. Not because of anything in particular, or even a bunch of “bad” things piled up. But just because it’s been a long winter and today marks 2 straight months of sickness in our house/for Kendall, and last year on 2/2 was the day that Kendall was officially diagnosed as Failure to Thrive and we started this journey. So like I was saying, its just been a really long….year. And today I just feel done. I’d like to buy a vowel please – and can that vowel be located on a warm tropical island where no children are allowed and nothing medical ever happens and you magically lose 85 lbs when you land there? Yes, that vowel. That’s the one I’d like to buy, Pat.

This is part of the “done-ness”. Our fridge looks like this. Pretty empty. I mean sure, we have some basics – a few eggs, some country crock, one tube of crescent rolls, a big bowl of ceviche i made while the fridge was dying, kendall’s medicine, one thing of gatorade and some pedialyte, and a tub of playdough. Which is supposedly edible. and pumpkin flavored! No coke though. Maybe that is what depresses me! I am honestly shocked to find how much of our day revolves around food that comes out of the fridge. No peanut butter and jelly sandwiches, cause we had to toss the jelly out. No cereal cause we have no milk. Is this getting whiney? Sorry. I just am shocked at the amount of money we had to pay to fix this fridge, the amount of food we had to toss out, and the amount of STENCH still emanating from it in spite of being bleached and scrubbed and doused with baking soda. In a word – it sucks.

And honestly – I have no idea how I am going to get it filled back up again. Payday is a few weeks away still. I don’t even know how to go about making a list of what I need again besides the obvious basics (see above!) But you know what? I believe in a God who knows exactly how it will get filled back up again. I believe that God DOES care about my crappy stinky fridge, just as much as he cares about my myriad other problems, and YOUr myriad other problems – big and small.

This blanket reminds me of that.

See, I was handed this blanket in a bag from a friend a couple weeks ago at church. The note inside was from a dear sweet girl who reads this blog. She lives with her family in Mexico. She knit this blanket for Kendall as she prayed for her for the past few months. And I look at this blanket every day and I think – wow. Someone was PRAYING for us – each and every one of those hard days back then. And I know that every day, someone else is praying for us, even when we feel like we do’nt have the strength around here to pray for ourselves. And we are NEVER alone. We will NEVER be forsaken or forgotten or truly go hungry because our fridge broke down.

Thank you SO much to the wonderful person who knit this blanket – I don’t have your permission to post your name here, so I won’t. But you know who you are, and I cannot express to you what your act of generosity meant to me. Even down to the detail that the colors you chose are quite possibly my own personal favorite color combo ever…your blanket is like a very personalized note from heaven that no matter how crappy my day may be, or feel like, I don’t really have to endure it alone. And somehow, that makes it a little easier to deal with. So thank you – from the bottom of my heart. When it’s not being photographed, this blanket is in Kendall’s bed, where I tell her the story of where it came from and what it means on a near daily basis.

so that’s where things are tonite. I am putting them in God’s hands. Because, well, mind are kind of full. And kind of tired of carrying everything. I am just very very tired. Even as I sit here, I myself still can’t breathe at 100%, and I can hear two, possibly three, different babies hacking up a lung upstairs. Again. Or still. Six more weeks of winter – I hope we all survive!

I really am sorry for the debbie downer tone of this post. But I just thought I needed to kind of lay it out there. Life isn’t always sunshine and roses. In fact, it rarely is. But i can say that tomorrow will be better simply because I have FAITH that it will. I have FAITH that as big as my problems can sometimes be, they are never too big for the God I believe in, the God who can send a perfectly colored blanket to revive a winter-weary soul at just the right time. You gotta be willing to accept some of the bad, so that you can really truly appreciate just how good the good is.

Tomorrow will be all about the good, I promise.

He’s got the whole world, In His Hands,

He’s got the little bitty babies, In His Hands,

He’s got my stinky empty refrigerator, In His Hands -

He’s got the Whole World In His Hands.

peace in the middle east -

pop it lock it polka dot it

Kendall, Mommy Moments No Responses »

Feb 012010

I spent two hours at the girls’ dance rehearsal tonite – this is part of their big main number. And now its stuck in my head! don’t worry – you will all be subjected to lucky enough to view this dance via video upload in a few weeks!

I just spent about an hour reading through posts from last year at this time. Oddly enough, they read MUCH like the posts from THIS year at this time! Everyone puking, breathing treatments, Kendall being sick, me being exhausted, blah blah blah. Circle of life apparently.

I feel like its all I whine about. And I am kind of over it. I would love it to just be spring now – but that isn’t likely to happen, so I need to figure out a way to get through the rest of the winter with some sense of sanity, and perhaps even a few good family memories thrown in there! But I am not sure yet how to accomplish that. i am sure that one of the first steps involves more sleep and breathing than I have currently been getting, but after that….i got nothin’. I have idea, but nothin’ solid. Watch for it though. it’s going to come bubbling up soon – ways to have fun family fun in the middle of a long sickness-filled winter!

Anyways – tomorrow we are having a pulse oximetry monitor delivered for miss kendall. This is the first step towards figuring out what else is really going on with some of her randomly weird episodes. They could be “desat” episodes, where she truly isn’t breathing as well as we all assume and hope, or they could be completely autonomic in nature. The plan right now is to monitor her continuous overnight, with spot checks during the day or when we’re seeing “an episode”, for the next month. If we are consistently getting low sats, or we are tying her episode symptoms to lowered sats, then we are to call back to Dr. A’s office immediately, and oxygen will be ordered as yet another “supplement” for her. I am not quite sure how I feel about all this. Relieved on one hand, that I will finally have the tools in place to figure out a little better exactly what is going on with her. Sad a little bit for her that we even have to get to this point.

and yet – I look back on the posts from last year, and I see how VERY SICK she was, and had been for a while….and I know that she is in a much better place now. I cannot complain about anything because at the end of the day, she is still here. And that is truly enough!

She also starts aqua therapy tomorrow – which is physical therapy in the pool. I cannot WAIT to see how she reacts to this – because I think she is going to absolutely LOVE it!

So I will have lots to update tomorrow!

Hope you all have a happy February – I can’t believe it’s february already!