I am beyond frustrated with unnamed Aurora medical center’s audiology department.
We got referred there by our insurance when Kendall first failed her followup hearing test through early intervention. They are the only place within 25 miles that insurance has approved for this test. It will cost us roughly $2500 if we go somewhere out of network for it. So we’re kind of locked in.
The doctor who is supposedly the only one in the hospital who can do this test calls me herself to set this test up. She tells me she has to leave town for a few weeks due to a family situation, but schedules me for the day after she is due to return, which was last Thursday. So I rearrange our schedule and trek on out to BFE for this test.
We get there and this med student who looks like she maybe is old enough to remember the turn of the millenium takes us back and proceeds to just start hooking kendall up to stuff. NO confirmation that she has the right kid, no birthdate confirmation, no family history, nothing. She just starts hooking her up. Kendall complies by promptly failing that test, but she continues to attempt to get better results for about ten minutes before huffing and puffing that we just need to go do the booth test. I explain that we have already DONE the booth test, I have her results, we got referred here for ABR testing blah blah blah, and doogie hauser has NO interest in even seeing what we’ve had done.
We go into the booth (oh after waiting for twenty minutes because someone else was in there getting tested), where she proceeds to engage with kendall the WHOLE TIME, so of course kendall is making the appropriate social cues to noises. After having been through this booth testing more times than i can count between karissa and kaylen and kendall’s first failed attempt, i can wholeheartedly confirm that this was NOT an appropriate way to conduct this test.
Doogie lets us out of the booth and proclaims kendall’s hearing perfect and do we need a copy of anything and have a nice life.
I CALMLY explained to her that we weren’t here for a repeat VRA/OAE, but that we were here to get an ABR by Dr. H. Doogie sputters that Dr. H isn’t there, she’s on a family emergency, and the papers didn’t say ABR. We go up to the front desk to confirm this, and doogie realizes her mistake. She then tells me that she can do the ABR no problem and starts once again hooking kendall up to things. By this time (an hour later) kendall is just DONE being poked and prodded and hooked up to machines. Nonetheless, doogie pushes onward, convinced that she will get results within minutes to prove her theory that kendall can hear perfectly. After ANOTHER HOUR of her trying to get kendall’s brain wave responses under control in spite of an obviously very tired baby who was not remaining very calm and quiet as we were instructed, she storms out of the room and comes back in with a more senior doctor, one who i am assuming has actually graduated from both high school AND medical college. This doctor proceeds to take a history, put the clinical picture together with everything, and asks why we are not doing this test sedated. I told her that was a very good question and i would like to know why i wasn’t notified that Dr. H wasn’t going to be in the office in the first place. They have no answer for this but leave the room to huddle.
Doogie comes back in and starts unhooking kendall and tells me that Dr. H will be back on monday and she will have her call us to review the results, but that since kendall DID pass the booth test with flying colors that Dr. H probably will agree that she needs no further followup or testing.
I was LIV. ID. For those who have the privilege of having SEEN my temper in real life, you know that while it takes a while to get there, when it goes it goes. I was so angry i was shaking as we left the parking lot. FOUR HOURS of time wasted there, insurance coverage down the drain because barring some amazing business office magic skills, they are not going to pay for a repeat test so close to the first one, if they even pay for one at all, all my anxious worries and stresses over waiting to find out if kendall has permanent hearing loss – all of that just brushed off lightly like this chick was determining what shade of makeup kendall should wear instead of whether or not she has a disability.
I called the office back the next morning to leave a voicemail for Dr. H, and Doogie instead picks up the phone in Dr. H’s office. She proceeds to be snippy with me that she is going to pass the message on to Dr. H and that i’ll receive a call when Dr. H has had a chance to review the file, probably on Monday morning.
So THIS MORNING I receive yet ANOTHER call from Doogie stating that Dr. H was taken to the ER with possible pneumonia and they don’t know when she will return.
I am beyond angry – what comes past angry – shock? tears? pulmonary hypertension?
All of the above.
I just want ONE SImPLE answer for this kid! Why can’t we get any answers?????
I know God has a lesson somewhere in all of this frustration and futility. I don’t see it right now, but I am sure someday i will.
I just had to get this out because venting it somewhere feels better than just letting it boil up inside.
This doesn’t make me feel all warm and fuzzy about going BACK to this place, but i feel stuck. There’s no where else we CAN go without having to auction off one of the other children to pay for it!
I just hate feeling stuck is all. Stuck with no answers. Stuck and frustrated beyond belief that this chick will possibly have screwed up our chances to figure out what’s going on with kendall’s hearing and its possible clues to her bigger issues all because she wanted to dress up and play doctor and not admit when she was in WAY over her head. This all could have been taken care of in the first five minutes of the appointment if she’d taken a stupid medical history or done her JOB and confirmed why we were there.
it’s all just so insanely stupid and i have tried and tried to be not angry about this all weekend, hoping it would get resolved this morning and now i find out it could be ANOTHER long week, and even then it won’t be resolved.
I just want to scream at someone or something and i want an answer and i want it to be fixed now and i want kendall to be fixed now and i am tired of being on this ride and i want off already.

read quick i am deleting this one for sure later.

t

Ok did anyone else ever watch the movie "UHF" with weird al yankovic? It was absolutely one of the most ridiculous things i have ever in my life seen, and yet, i laughed hysterically at it. A young Kramer (of Seinfeld fame) plays a crazy janitor who comes up with stupid shows for a failing TV station all PeeWee herman style and blah blah blah the day is saved. ANYWAYS – on one of his shows he gets all excited about the toy inside a box of cereal and thus the phrase "Free toy Inside!" has made its way into my personal vernacular (as well as that of my crazy extended family (who I believe are the ONLY humans on earth who actually think this is a funny movie).

So – there you have my long-winded explanation on why I chose my post title.

That and the fact that, for once, there is actually a free toy inside today’s post. Well not a toy, but something fun nonetheless. Free Postcards!

Uprinting, one of the sponsors of terra talking, is hosting a giveaway for me to extend to all of you. Now I think these are very cool and have a great variety of uses – personalized  custom postcards and custom greeting cards! My sister uses custom postcards to do all of her invites and thank you cards on for birthdays and BBQ parties and the like. It is a very cute way to create something that is personalized with YOUR colors and pictures, and not just a mass produced template.

I bet if we sat here long enough we could come up with a GREAT list of ways that you could use your postcards – but i have a better way – leave me a comment of how YOU could or would use the postcards – got a birthday party coming up? want to announce a new address? Want to just have a stash of "thinking about you" cards on hand to send to friends via snail mail to help keep the Post Office afloat? I’m giving away two sets of 200 Postcards – one set to the comment that makes me laugh the hardest and one set to a random number generated according to the number of comments we get. So ready set comment! (I promise it’s not that hard).

Fine print to the giveaway - you will have to pay shipping of about $10 (I think), and the coupon code will be sent directly to you to be used at Uprinting’s store.

I am still not sure how I am going to use mine. I am thinking of having the kids hold up signs with words on them (like Thank You or something like that and then taking a picture of it. The possibilities are endless. i can’t wait to get some more ideas from you all though. So PLEASE take a minute to comment. I know there are so many of you who read this blog – and so many of you take the time to email me, which I appreciate – but i want to see how many comments we can get here – and usually something free will spur that commenting action. So just do it! Please! I promise you will not get rabies from pressing the comment button and typing a comment.

Annnnnddd……

what else. Second day of school – still trying to get into a good rhythm and shake off the last vistages of summer. (It occurs to me that vistages might not be a word but it sounds good doesn’t it? I think the real word is vestiges, yep, no red squiggles there. Vestiges it is then.) Kendall had another rough nite last nite, working from 7 until midnite to get her first BM in 6 days out. I feel like a midwife at these times, trying to help birth this poop from within. It’s so sad to see her. I actually videotaped last nite (yeah who thought THAT was on the mommy to-do list when you signed up for this job???) with the hopes that the GI doc can see that its not like its just constipation we’re dealing with here. It’s as if her entire colon has shut down, and its just causing lots more spasming up the line, but nothing is moving anywhere. Very frustrating, and not a fun way to spend a nite.

Tomorrow is her 9 month well baby check at Dr. natalie’s, and then on to her hearing test. hopefully we get great results and get them back right away. It seems like its a crazy busy week – but I guess this is kind of every week from here on out – having to fit school schedules in with all the therapy and doctors visits and tests and work and playtime and grocery shopping.

So that’s that. Ok ready set go comment. Tell me all about your postcard whims and wishes! Can’t wait to see what some of you come up with!

terra

they’re off and running. Growing up. Disobeying my explicit instructions to remain my babies forever. A 2nd grader and a kindergartener. When and how did this happen? Wasn’t it just yesterday I brought karissa home and wondered how on earth i would ever deal with a newborn and a 2 year old? (And oddly enough – i guess that IS what i have to deal with, all over again…) Weren’t we just rejoicing at karissa being able to hear us after her tube surgery, making small but sure steps forward in hours upon hours of speech therapy? And I could swear it was just this morning that they were bugging me to do Bella Dancerella for the 529th time this week…

How does this happen? how does life move so fast while seemingly taking forever to survive the days? How are my babies growing up right before my eyes?

But i am glad that they both seem to be so very excited for school starting. No tears here! (well, except from kaylen who had to suffer not just one meltdown when kealey’s bus left but ANOTHER one when karissa’s left a few hours later. awesome fun.) Kealey leaving was emotional – but just in a quietly choked up kind of way. Just watching her get bigger and older every year. I hardly had time to think about Karissa’s school-going because we had therapy from the minute we got back in the house until I took Karissa to the bus stop. CHA-OS. What else is new around here though? I think I managed to get some lunch in her in between keeping kaylen out of the therapist’s huge bag of special toys and talking with kendall’s nutritional therapist about all her poop issues of last week.

So we make it to the bus stop and karissa is posing for pictures and then the bus comes and she runs right up the steps – so proud to FINALLY be getting on the bus ON HER OWN, and going to school LIKE HER SISTER, and not having to be ONE OF THE BABIES anymore. She just marches right up those steps with her huge Barbie backpack on with not even a backwards glance – so excited for what this new part of her life will bring, not even a question in her mind that this is the bus to school, to learning, to growing up. And up until this point I have been relatively nonchalant about karissa’s going to school. Not NEARLY as emotional as I was about Kealey’s first day of Kindergarten. But it started to hit me yesterday as we were walking around Karissa’s room, seeing her nametag on her desk, and her little attendance magnet, and her space to hang her backpack – that that’s MY baby boogerton they’re talking about. My lovable huggable gullible little baby who would surely walk off with any stranger who offered her a piece of candy.

and i saw her on that bus, happily picking out a spot on the OTHER side of the bus in the back and i went and banged on the window to get her attention to come sit where i could see her. And she giggles that toothless grin she now has and plasters her face to the window and blows me kisses and it’s all I can do to not run up the steps and grab her and tell her i was just kidding she doesn’t actually get to go to school this year she has to stay home with me for longer. But i don’t. I take her picture until i can’t see her waving any longer, knowing she is giggling away with Samara and Emma crammed in three to a seat, bouncing with the excitement of FINALLY going to school. And I throw the babies in the car so i can speed like a bat outta you know where to the school and beat off the other parents for a parking space so i can video taking her first walk into school. And her bus pulls up and she gets off – excited but not surprised to see that I have made it to school also, and into the building she heads with only a quick look back to yell “love you momma!!!” and blow me one more kiss before following the other herd of children into their new homes away from homes – their classrooms.

I know I wrote kealey a letter on her first day of Kindy, but Karissa is such a different kind of drumbeat, I decided i better write it to her teacher.

Dear Mrs. K –

I know I met you yesterday at the walkthrough and we briefly discussed Karissa’s IEP/learning situation and introduced her to you, but I didn’t get enough time.

Let me tell you about this amazing little girl that you have the privilege of having in your classroom. She is nothing short of a miracle, that one. From her very first moments of life, born into a pool, swimming in my arms, she has “just kept swimming”. She was born with a spinal defect affecting her hips which docs weren’t sure what the prognosis for her would be. We never knew if she would have problems walking, or running or riding a bike with her sister. Sometimes the jury is still out on that one…but I digress. She endured a lot of pokes and prods her first couple years of life, and after a hearing test confirmed that she was indeed almost completely deaf in both ears , she had surgery to drain the fluid and put tubes in her ears and she could finally HEAR me telling her I loved her, or singing to her at night. She could finally start to communicate back with us in her own way. And she swam on – through weekly therapy sessions and group therapy sessions and group play sessions and special preschools and finally regular preschool – always just a little bit behind, always having to work just a little bit harder but she has DONE IT.

You will probably only understand about 3/4ths of what she says. Missing her top four teeth does not help this at all. Speaking about complete nonsense most of the time doesn’t help either. But her mind works in amazing ways. The reason you won’t know what she is saying is because she is asking about something that happened to her (or maybe she saw it in a movie or just heard me talking about it) 5 or 9 months ago. Maybe it was last year, maybe it was yesterday. She doesn’t have a concept of time. in her world she doesn’t need to. Just so you have that straight. Other things that don’t matter in Karissa’s world : going to the bathroom when it’s convenient, rules of any kind that she didn’t herself make up, laws of gravity, and sleep.

You see, she’s really a princess. A pretty pink pageant party princess. Trifles of real life don’t concern her. She is here simply to grace you with her presence. And grace you she will. She may not seem to ever stop talking, but if you sit and listen to her, you’ll hear how much she loves everyone and everything. If you pull her up onto your lap, you’ll get the best hug you’ve ever gotten. If you melt into her embrace you’ll be greeted with one of the slobberiest loudest kisses on your cheek you’ll ever get from a human. And she will LOVE YOU FOR LIFE. This little girl has more love in her pinky finger than most people have in their lifetime.

She’s either going to be a dancer or a princess someday, so it’s ok if she never learns her numbers or letters (I know because I asked her). Or maybe a mommy. Either way.

i have no doubt that if your fine educational establishment could manage to lose Kealey on her third day of kindergarten – my responsible one, my one who craves order and lines and boundaries – that i will get many a call from you that Karissa is not with her class but you’re pretty sure she’s somewhere in the building. She likes to wander. Her head is firmly in the clouds and not much that you say or do can get it out of that. You just have to go with it.

There’s so much more I could tell you about this beautiful amazing little girl. She’s so special and precious. I know you’ll teach her lots of things that she needs to know, but just know that I am the one who taught her how to shake her groove thang, how to do her pageant face and twirl, who taught her how to laugh and laugh at everything and laugh loud because its so much funner when you have to throw your head back and laugh. So you go ahead and try to teach her numbers and letters and how to spell her own name and I’ll keep teaching her the other important stuff.

Take good care of her please.

Just please please please don’t lose her.

sincerely,

karissa’s mommy

i had most of a post typed up on saturday….but i switched computers so now its gone and i forgot what it was about.

that is SO par for the course these days.

it has been a heck of a week. I got hit on Tuesday with one of the worst asthma flares i have had since we moved from CA (where they were always bad). looking back (and i know ben will keel over in shock at this admission) – i probably should have gone to the ER. I needed that kind of support. But i didn’t and i feel like i am on the upswing again I just need to be able to gather my thoughts again so i can remember what i was trying to do last week before i had to focus all my thoughts and energy on breathing and staying alive. It really is amazing how much energy goes into inhaling and exhaling when your autonomic system isn’t doing that for you. Our bodies are AMAZING machines put together by God to run just precisely so. It amazes me that MORE stuff doesn’t go wrong with us all on a daily basis.

So anyways – yeah. breathing should be working better hopefully by tomorrow.

Ok update – it’s tomorrow! almost the next day! And yes breathing got much better today. SUCH a relief.

Woke up today to ben this nice man in my room telling me that kendall’s pump failed last nite so she was not fed all nite. Most 9 month old babies do not need to be fed through the nite, so its not like its a HUGE emergency, but it was 12 ounces of food that she is SUPPOSED to have, and as it is I spend most of my day feeding her. There was just no way i was going to be able to get 12 EXTRA ounces back into her. It was a little shaky at the beginning of the day – I am sure that the lack of food had made her sugars drop a little, plus she NEVER has an empty stomach, so when we started trying to shovel food back into her it was enough to cause a little bit of a revolt by her system. Since she can’t throw up anymore (because of her Nissen surgery), it results essentially in just a lot of dry heaving/retching, which turns into horrific hiccups. And then her eyes get all freaky red-like. Not a fun situation.

so we just tried to find a good happy flow today and go with it. She took an almost 4 hour nap this morning (yeahhhh, low blood sugars much?), woke up in time for physical therapy and then decided twenty minutes into that that she wanted another nap.

apparently i am being too negative. Ben did an OUTSTANDING AMAZING WONDERFUL job of assessing and fixing the situation this morning. all is now well. The girls enjoyed but were a little shocked by a day full of absolutely nothing. They played with friends and tortured each other all day long. And managed to not destroy my house in the process. Thank God for new hair straighteners from Grandma to divert their attention.

anyways – on to the point of this post – NEW PICTURES!

Enjoy…

All taken by my darling sister. She is so amazingly talented and i am in love with what she captured. There are tons more to show you, of the other sisters also. But she is holding them hostage so they’ll have to wait for another day.

Hope you all have a wonderful nite.

And that my Christmasy banner doesn’t make you feel too anxious about the fact that there’s only 100 or so days left till Christmas.

Joyeux Noel!

terra

She DID It!!!

So very proud of her! Almost 5 months of therapy to get her here – but man is she just taking off! Shortly after she rolled in this video, she had a repeat performance of rolling AND then managed to sit on her own for about 10 seconds! Her therapist and i were clapping so loudly that of course the other girls had to come running in and then we all proceeded to overwhelm poor baby who decided she was done with therapy – but it was SO amazing to see her finally put all the pieces together! Still a long way to go to get her caught up – she is definitely favoring her right side so her left side isn’t getting as strong. And as you can see – she HATES being on her tummy – she quickly rolls back off of it – and there’s a LOT of stuff you can’t do if you never build the strength you gain by being on your tummy, so we still are taking baby steps there – but i am ecstatic that my baby girl finally hit her first major milestone!

And what a gorgeous day to do it on! I hope you are all enjoying this weather and maybe even a good meteor shower tonite if you can get to somewhere you can see it better!

ok since it took me about ten minutes to type that last sentence – i’m going to try to go restore some brain function!

have a great day! keep on rollin’….

terra

I know i know! I forgot to blog how last Thursday’s appointment with the neurogen lady went!

Basically – it was a lot more of the same. 309 things she DOESN’T have, but no real answers on what it MIGHT be. Other than, she has a chance of just growing out of it, a chance of it being a chromosomal defect with a good life expectancy, or a chromosomal defect that will limit her life expectancy. I of course only heard her saying “she’ll either be fine in three months or dead in a few years” – Ben with the cooler head heard that there is still a range of things that we can look for  that may be fixable/treatable, as well as a chance that she does have “Benign Congenital Hypotonia”, and will just wake up one day to all her neurons firing correctly and start catching up. The doctor said that typically happens for most kids with BCH between 6 months and a year of age – and that it just takes their brains that long to realize that they are no longer in the womb and have to start working on their own now.

While I hope with every cell of my being that this is the case for Kendall Quinn, it’s just not enough for me to sit back and relax.  It doesn’t tie all of her other issues up nicely in a pretty little package for me. Not yet at least. Maybe after a good black and white lab report comes back in my hands showing me that a, b, c, and d are totally negative, i’ll believe it.  When everyone was hollerin’ up the cystic fibrosis tree, when I got her sweat test back as TOTALLY low, it was enough for me. I could see it in black and white. I KNEW that wasn’t her problem. But I don’t have that now.

So we went to the lab and had 9 vials of blood drawn, dropped off two jars of fecal matter (so gaggy!), and managed to squeeze about a tablespoon of urine out of her to run about 30 tests. I forgot to copy down what they are running, but i know they (both GI and neuro) are definitely looking at things that have not been looked at before. Testing her thyroid, metabolism, fatty oxidation, protein breakdown, blah blah blah. I think the neuro didn’t even specifically tell me what all she was testing for – just listed a bunch of random stuff!

So – that’s that. We follow up with GI in milwaukee on Sept. 9 (09-09-09 – what an awesome day!). In the meantime we have to go back up to have this metabolic testing done in a lab. I have to schedule that still. Neuro says to call back in a couple weeks to see what results are in, and then we’ll schedule follow up from there to discuss the results of that testing. So its a lot more hurry up and wait. She is doing pretty good now – i think she is comfortable and making definite strides! I have lots more catch up posting to do so i’ll end this one here. That’s our week O’ testing updates!

terra

Well….

It went.

It wasn’t an overwhelmingly helpful appointment, and yet I feel like we are definitely headed in the right direction with this doctor. He wasn’t interested in rehashing a lot of ground that’s already been covered, and agrees with the direction our other docs have been leading us. Namely, narrowing down the reason for her poor nutrition.

Basically there are three main reasons for “failure to thrive"”:

1. Not enough calories consumed
2. Malabsorbing the calories that are consumed
3. burning up more calories than are consumed

(Wouldn’t we all LOVE to have to deal with number 3????)

Anyways – we can clearly rule out reason #1. He, his nurse, and his dietician were all quite shocked at how much she takes in and still has no weight gain. (Or very poor weight gain we’ll say). As we have suspected for a while, she shows the most signs of malabsorption, so that’s where we are concentrating most of our efforts with a lot of bloodwork and stool tests. He definitely did not shy away from the fact that this COULD be a mitochondrial disorder still, and that it would certainly explain a lot of what goes on with her. BUT – he doesn’t want to leave any other stones unturned that might be more fixable, so onward we go. He was glad to learn we are following up with a geneticist tomorrow, and hopes that we can combine a lot of the testing to get us some answers quicker. i have honestly never been SO ecstatic to catch a stool sample as I was today. It’s seriously as if Kendall knows i am waiting for one. She usually just stops going altogether, or she starts in with pure diarrhea (isn’t it so gross how i discuss bodily fluids here?!?!?!) = but FINALLY FINALLY today I got a good catch. I am telling you – it was actually exciting. I think I need to get out more…

So – that’s that.

It wasn’t like we were dismissed, as I was worried about. And yet I think he kind of was missing some of the other things that are starting to bother me (her hypo/hyperglycemic indications, her inability to handle full feeds and her leaning towards dehydration altogether too often for my liking, things like that). Hopefully Dr. BK tomorrow will be more helpful on that front. I feel like I have been so worked up over today’s appointment that I don’t even know what to think about tomorrow’s. Or if i even can muster up anything to think.

The girls were apparently having WAYYY too  much fun with their cousins to be bothered with coming home with us – so they are still there. PROBABLY not even aware that we came home! they won’t even miss us till tomorrow! I will be driving back up there (or meeting my family halfway) to get them, and then take them to Memaw and Poppa’s house for a few days of fun and fishing! While I will miss them terribly, I am so glad that they are able to have such a fun time during this crazy week. It is almost like a little vacation for them, which they so much deserve. I am SO GLAD that Karissa’s cast got to come off so that she could run and swim and have fun with all of them. they’ve been through so much craziness this summer, so many therapy sessions and doctor appointments and driving here and driving there and being quiet for this phone call or that phone call. And for the most part they’ve been such troopers. I am so proud of them.  My beautiful strong baby girls.

So tonite we’ll just enjoy a hopefully quiet family dinner, just the four of us. And we’ll maybe get in bed a little early. And then we’ll get up and start it all over again, and see what tomorrow brings.

Thank you for the love, support, and prayers. It is so good to know we are not alone as we go through this gauntlet of specialists this week. As always – please feel free to ask me any questions if what i write doesn’t make a lot of sense. sometimes i feel disconnected when i am trying to document these lengthy appointments, and i am sure it shows in what i am trying to write.

have a wonderful wednesday evening!

terra

I do not know where we would be without family.

Family is the glue that holds the pieces of you together when you feel like things might fall apart, the stuff that keeps you upright when you feel kinda like the scarecrow on his wobbly legs from Wizard of Oz, that invisible force that somehow pulls you back and pushes you forward at the same time.

I thank God for our amazing family tonite.  We have been fed, pampered, relaxed and cared for and allowed to just BE. In stark contrast to the ball of nervous energy I was prior to actually getting up here, I find myself able to  laugh at the craziness of the cousins all playing wildly together, yell at the TV when the judges make bad calls about the contestants on America’s Got Talent, sit and enjoy a nice cold coke and a bowl of ice cream while reminiscing about old family memories – and decidedly NOT concentrate on anything medical.

Tomorrow will be here soon enough, waiting with all its unknown glory. We may get answers, and we may not. I know that either way, we HAD to come here. This was/is the next step for our baby girl. And then the day after that will be its own step. And we’ll just keep putting one foot in front of the other, keep moving forward, keep on keepin’ on.

She looks good today again. A little crackly in her lungs again so i don’t know what that’s about – hopefully a lot more of nothin’!

So while i still don’t have a LOT of faith in this appointment tomorrow, I know we have to have some hope.  We always keep hoping. Maybe this doctor tomorrow will have THE BIG ANSWER, and maybe he’ll just provide another small piece. Maybe they’ll want her back to run lots of tests, and maybe they’ll just have us space out our visits over the next few months. i don’t know why i am more worked up over tomorrow’s appointment than Thursday’s. I guess because we have been so disappointed with previous GI’s we’ve seen, and by this point i think even Kealey could tell you we’re dealing with far more than a GI issue. but maybe it’s because, somewhere deep inside, i really do have a HUGE hope that they’ll fix her tomorrow. That we’ll walk in those doors with a mystery baby, and walk back out them with a prescription in hand guaranteed to just FIX everything within 24-48 hours. I think it’s because that little dream is so much easier to handle than the other one I have, where they tell me that her GI system is still not working right, and we still don’t have any idea why or what they can do to fix it before it shuts all the way down. But hopefully they’ll land somewhere nicely in the middle. Yes there are a few more things we can try, a few more tests we can run, and in the meantime, here’s how we can stabilize her.

This morning I was working with two different nurses to try to get the remaining parts of her medical records that I don’t have, and as they were coming in on the fax, it was surreal to see some of what I have been told verbally written there in black and white on the reports. “Chest x-rays show persistent chronic lung damage.” “Kidneys show signs of hydronephrosis." “Possible subclavian arterial defects”.  I knew these things. i spout them back to other doctors as part of her medical history, but seeing them just hit me. Grounded me a little to the fact that there IS something going on that I can’t quit fighting for her for. I see why Dr. A was so insistent with us last week that we get her help NOW, that we don’t have time to sit back and wait. It’s not so much because she’s doing bad or looks bad RIGHT NOW, but because we have no guarantee that the next stomach bug or viral cold won’t be the time that her kidneys REALLY have trouble bouncing back from, or that her lungs have a harder time clearing from. She is living not in a state of health right now as much as disease-controlled. Whatever her “disease” is, its controlled. For now.

And THAT is why we are here. To identify the disease and pull it farther away from the fine line that she lives on and pull it back towards a level of HEALTH.

so I guess I should go to bed. I don’t even have wireless access right now, as I am writing this. It will be posted tomorrow while we meet with the doctors and nurses holding Kendall’s fate in their hands. And yet we know that truly, it is in much Bigger Hands than theirs. So as our family gathered tonite and prayed over Kendall, i began to feel the peace that I so desperately needed. I know so many of you are praying for us and thinking of us as well, and I cannot tell you how much that means. We can feel it all and are so very blessed to know each and every one of you.

the other nite I signed off with the words “I hope”, and a friend emailed me to say simply, “me too”. It brought me to tears with its simplicity and its touchingness, the raw emotion conveyed with such simple truth. Can I ask you all a favor? If you are praying for and thinking of us today, will you please take three seconds to leave a comment and tell us “me too”

Here’s to hope…

T

It seems like we do a lot of waiting around here.

We waited for her to breathe on her own, waited for her to get off oxygen, waited for her to come home from the NICU. Waited for weight gain, waited to see if this medicine would work or what that formula would do, waited for bloodwork to come back. We wait for her to meet milestones, still waiting for that weight gain, waiting for answers. To quote Dr. Seuss –

“sometimes all you will do is just sit around and WAIT.”

So now we wait for Wednesday and we wait for Thursday and we wait to see what they will say, and what tests they want to run and how long we have to wait for them to be done and for results to be in.

And guess what?

I HATE WAITING. I have the patience of a flea. I am not even sure if they have patience but if they do, it is in miniscule supply  – and THAT is how much patience I have for things. And God, in His humorous way, is teaching me to slow down, and just WAIT. Wait for Him to reveal the bigger picture, the better plan, the ultimate answer. I was struck by a verse in Habakkuk (I know, of all places right?) — “Though it linger, wait for it.” God knows how impatient I am, how we all can get sometimes. And he tells us right there in black and white – “Look, I know it seems like this is taking FORREVVVERRRR, and trust me, you really have no concept of forever at all. I know these days and weeks and months seem to be dragging on, but I AM IN CONTROL. And if you really believe that, and have faith in that, then just chill.”

And so that’s where I’m trying to be today. Just chillin’. Packing a few things here and there for the trip up, making plans for Thursday’s appointment/childcare, making some cupcakes. Kendall has been a little off her game since Saturday afternoon – just not tolerating her pump feeds but having no real desire to eat a lot by bottle. She’s getting her “Kendall fevers” which aren’t that high according to thermometers, but she feels like her skin is burning up. What’s going in is definitely not what’s coming out and again I have no idea where she puts all of it. It’s just been one of “those” kind of days. But today, even though she was still fussy, she is back up to full strength feeds. She wanted to play on the floor with me while her sisters were all otherwise preoccupied. I think she is going to be very close to sitting on her own soon (before ten months I bet!) She is finally starting to show some “ooomph” towards being a real baby, vs. being content to just be laid wherever and watch the action. It is such a good sign. And of COURSE she would have to be at her best ever the week we finally get in with these specialists! I have little to no doubt that by Friday she’ll be huffing and puffing to breathe and having bad diarrhea and in general just a mess – simply because I know that’s how my children are. Practically knocking on death’s door when I make appointments, and the epitome of fresh faced health by the time we get to the doctor’s office. Followed up by a grand finale of more sickness after the docs have already dismissed me. *shrug* Surely they get that from their dad…

anyways – I have felt very distracted today by thoughts of what will happen at these two appointments. Will these doctors listen to all that she’s been through and try to see the big picture here? Or will they tunnelvision down to one or two symptoms that seem to be resolved and send us on our merry way? Will they want to admit her for testing? Or just schedule a few outpatient days spaced a few weeks apart? Will they want to test her for things that make sense to me (you know, with my faux medical degree and all)? I haven’t gotten quite worked up over it – but just a level or two below that. I just want to be HEARD by them. I want them to see not the happy baby who I will be bringing in, but the baby who we have lived with and labored over and prayed for just to keep her alive the past 8.5 months. I want them to see that her current state of health is no fluke, but rather a precariously balanced house of cards and meds and elemental formula and therapy and countless countless hours poured into her wellbeing. And i want them to give me answers and a plan and some HELP for her.

But then again, maybe that’s asking too much.

I don’t know. I do know that i have to start focusing on something or else we are all going to be wearing the same clothes for three days straight and the dog will be left to his own devices here in the house.

So – there’s your dose of randomness for the day.

thanks for checking in – it helps to know there are so many of you out there rooting for kendall, praying for us, going through this craziness with us.

hope your monday has been much more productive than mine has!

T-crest Out