Trust me – it really means nothing. It’s just the name of one of kendall’s meds and the box happens to be in my line of vision at the moment and saying it makes my tongue happy. (see previous post on “Tectonic Plates” – I clearly have linguistic hangups.)

Welcome to tonite’s version of a blog post. It includes me hopped up on too much insulin because I haven’t eaten a meal all day. don’t get me wrong – i’ve still consumed calories. I just haven’t had a real meal. So today we are just going to read a bunch of random terra-isms. enjoy.

a.) I have not gone anywhere today, and yet have been busier than a one-armed paper hanger. I myself was shocked this morning when Kealey was asking me for her daily agenda and i had to check about three different places before I realized that yes, we really don’t have to be anywhere today. Very odd feeling.  What better kind of day to have friends over all day??? I did, however, still get dressed. yes i am proud of myself for this.

b.) I think I might make cucumber tomato salad tomorrow with my own freshly grown produce. I am prouder of this fact than I probably should be. It will in no way rival Noodles’ amazing salad, but it will be good because we grew it ourselves.

c.)Obstacle courses set up with random objects laying around your house really can entertain 6 kids for a good long while. A stopwatch app on your phone really ups the cool quotient. If i had had two seconds to hear myself think I would have gotten the camera, but no such luck. Basically we used hula hoops, a ball, a ballerina barre thingy from Bella Dancerella (read: plastic POS), the swingset, a scooter, and plastic balls in our pit of penicillin (aka the stagnant plastic pool on the back porch). It was good times. If you have a gaggle of bored children on your hands, grab some random objects + a stopwatch instrument of some kind and head on out to the backyard.

d.)I am going to try to go to bed while it’s still today. Unlike last nite when i went to be when it was tomorrow, which is today. The later I go to bed, the higher the likelihood that we will have a pump error or an awake baby. Oddly enough this fact was proved last nite (this morning?) by both.

e.) It is altogether too easy to forget to return a Redbox movie. good thing its only a dollar a nite but MAN. So someone please call/text/FB/email me tomorrow and tell me to take the stupid movie back to meijer already.

f.) speaking of tomorrow, we do actually have places to go. It’s my day for VBS dropoff (= I have to be up and dressed by 8:30 in the morning which is, shamefully, a stretch for me). Then we get a little break before heading to the ortho surgeon for karissa’s cast judgement i mean followup.

g.) I consider the fact that I folded two loads of laundry while standing up to have fully cancelled out the handful of M&M’s i consumed post-folding.

h.) Aunt Margie – if you go to the top of the post and click where it says “comments”, it will open up a page of just that post, and it has a bunch of little icons near the bottom (I think). one of them is a printer. It will give you a print friendly version of the page that you can print out for grandma. Oddly enough – this little tip works for ANYONE – not just Aunt Margie and grandma. But they were who I did it for. There’s lots of fun new little things here, hey? More coming soon!!!

i.)I think my brain officially just stopped working. I am glad i made a whole post without mentioning other medical stuff.

Remember that only you can prevent forest fires.

terra

Well yesterday’s appointment wasn’t quite what I expected.

Dr. A also told us that he can’t do much more for her and that we need to get her to a higher level of specialist NOW. I rolled my eyes and said yeah i’m working on it and he said “no you REALLY don’t have time to wait. based on her labs and her clinical presentation you have to go home RIGHT NOW and start calling and if they don’t give you an appointment within the next week, then I will start calling them and telling them it’s not an option.”

It was a devastating blow. I mean, I am so grateful that we have doctors who aren’t into playing an ego game but do realize when they are outmatched and say – move on, get the real help you need.

So after just the slightest of meltdowns, I calmed back down and called Milwaukee for an appointment.  And lo and behold, they had a cancellation for next week. NEXT WEEK! Do you know how unheard of this is? Extremely. Of course it could only have been by the grace of God that we were able to get in so quickly, that it would work with our schedule AND Ben’s work schedule, and that our wonderful family in WI will all be home and  willing to help out with the other three girls.

So I cancelled the surgeon’s followup for next Wednesday and instead we’ll go up to CHW. We don’t know what to expect at this point, although I don’t anticipate that we’ll be direct-admitted unless she can’t fight this cold off and ends up crashing. Eh. you know, six of one half dozen of the other . She could, she may not. I’ve stopped trying to plan for or anticipate what her body may or may not decide to do. More than likely we will not be direct-admit, but may end up getting scheduled for planned admit for further testing to get more results for Kendall.

And then we’ll have another appointment the next day with the neuro downtown. It will be a whirlwind of info I am sure.

it is late and i am tired and i have truly no idea why i am still awake and blogging this. this is so not going to make any sense when i read it again in the morning.

but i’ll leave you with this. i found this little “angel” I have been looking for for a very long time. what are these called? willow somethings? (see this is the whole not making sense thing that will hit in the morning…)anyways. i have this on my counter where i see it every morning. and i think – we always keep hoping. never give up hope.

I hope.

terra

Finally. A week (almost) free of doctor’s offices, worries about Kendall, emergency room visits and random bodily fluids.  It’s starting to look a little more like normal around here. and yet I can’t quite shake the feeling that we’re always waiting for the other shoe to drop, that another inpatient admit is right around the corner.

so I’m trying to put all that out of my mind and focus on the good things.

Like the beautiful weather of the past few days – FINALLY its more like summer!

Or my garden that is finally starting to produce real consumable vegetables (well and fruits if you’re part of the genre of folk who believe a tomato is a fruit).

And the taco salad that I made the other nite that actually turned out good! (Faith I think i found a similar recipe to yours!! I was so excited!) I think it was the first meal that I have made a la the old days in a LONG time. i used to be a pretty good cook. I used to be in charge of my life and my house and my three jobs and I was pretty good at it.  This week I have gotten a glimpse of the possibility of getting there again.

It’s been a pretty quiet summer, but a good one nonetheless. We have had a lot of fun times just being together as a family this past couple weeks, and I hope it’s been as good for the girls as it has been for me. Kealey continues to be my big helper – she is learning how to stop pump alarms and disconnect her sister in order to hold her without pulling the pump/IV pole around with her. I told her she will be half a doctor by the time she’s in high school and she just looked at me and said “ but mommy – you KNOW i want to be an art teacher!!!” Ok fine, you’ll be an art teacher who can handle almost any emergency then, alright???

Karissa did end up getting her top four teeth pulled on Thursday. It has definitely helped in some ways – her pain level is way down, she isn’t protective of her mouth as much anymore, and she is actually trying to say words normally again (she was not using her tongue at all last week because it would hurt too much to put it against her front teeth to make certain sounds. She is starting to eat a little more normally now after a few days of just whip cream and smoothies. i think the reality of life with a cast has set in, i.e., no mommy cannot take it off whenever it gets itchy or you want to go swimming. We find out on Friday if the doc wants her to keep it hard casted for school starting or if we are going to a softcast/brace. he has a good point about the fact that she will be trying to play on the playground and learn to write and being bumped around by lots of other kids and without a cast on to help protect the hand she could re-injure it pretty bad. But the mommy part of me wants her to be able to start school without it. she gets so easily embarrassed when people are asking her what happened, and she walks around most of the time we are in public with it held behind her back. I am hopeful that a scad of new school clothes will help re-boost her confidence, but it’s a tough thing for a little girl like her. My heart hurts for her some days, and i am so proud of how well she has handled this whole thing. Her smile looks different without all her teeth. I can tell her body is doing a good job of trying to heal itself, but it wears her out still most days. This too shall pass though, right?

Kaylen has definitely learned how to communicate in the English language the past few weeks! She repeats everything you say, as if she is trying out new words and sounds on her tongue. Her funniest thing lately is to sing “Na na nana, hey hey hey, goodbye”!!! She’ll start singing it randomly, and of course our laughter is just the encouragement she needs to keep singing it. She is finally starting to interact a little more with Kendall, definitely taking on the role of “big sister helper”. Well, as much as having a heavy singing bear and your bottle thrown at you in your crib can be considered a help. Kendall definitely gets an apprehensively guarded look on her face when she sees Kaylen approaching!

and in Kendall news – no news is GREAT news! No bile pukes, no major crashes, no new symptoms! She is definitely having a good run since last Saturday – almost ten days of GOOD HEALTH! It seems like so little, and yet this is actually the healthiest she has been in a few months! the last time we saw this was in May when she started really putting on some good ounces. And of course then she crashed in early June, so you can see where my fear of the other shoe falling comes in. Sooner or later, something will happen. I can squeeze my eyes shut as tight as they’ll go, and pray as hard as I can, and shake that magic 8 ball 893 times, but none of that will change that this is just Kendall’s way. Two steps forward, and a few back. I am frantically pushing her therapists to make her learn stuff, do stuff, gain skills NOW – so that next time she crashes we don’t lose so much ground. Until we find and fix whatever the underlying issue is here, we will just continue to go in this bad cycle.

Tomorrow we have another follow up visit with Dr. A. I am hopeful that maybe we’ll get some of her biopsy results back so we can know more of what is going on internally with her. she had a few drips of apple juice from a straw last week courtesy of Memaw, and within 4 hours she was dumping it (her GI tract moves it through too fast because her pancreas and liver can’t handle the extra work required to try to break it down into useable food), and had bad diarrhea. From less than a strawful of apple juice. i just don’t get it. Lots of kids have apple juice. Lots of kids have a lot more food experiences than her, and they don’t react like that to regular stuff. I also caved in and gave her a taste of ice cream (literally like i just stuck it to her lips), and I am SURE that will come back to haunt me sometime in the next 12 hours (she doesn’t have regular BM’s, so we’ll see what color her next one comes out). But she looked so cute just longingly gazing at all her sisters having their ice cream cones, I couldn’t resist! No kid should have to live like this – never getting to taste or experience certain parts of life! I could handle knowing it’s a peanut allergy, or a shellfish allergy, or any other specific group of foods. But right now it seems like its EVERYTHING. And no one can tell me why or how to fix it. It’s frustrating. It’s frustrating to spend most of my day making sure she gets her 40 ounces in (she can’t handle the pump going too fast, so it takes HOURS for each feeding on the pump, and she just wears out when she tries to take it orally, and then falls asleep) – and then see a gain of a few ounces, or worse, a loss. WHERE is all this food going??? something in her body is burning it up at almost a faster rate than I can get it into her, and that is frustrating.

i have spent countless hours this week researching hearing tests and hearing loss in infants based on last week’s dubious showing at the hearing center. Her therapist shook a maraca in her ear like it was going out of style and said – oh she can hear! look how she turned to that noise! I wanted to point out that even Helen Keller herself could probably have heard that god-awful noise, but i thought it would fall on … snicker…”deaf ears”!!!! HHHHHAAAAAA – I slay myself. (ok tell me honestly you didn’t at least snort laugh at that!) Seriously – I know she CAN hear, some things. I have never doubted that she heard some things. I know she knows my voice. I know that SOME of the tests that she failed last week could be behaviorally based and therefore not TRUE indicators of what her hearing is like. But to fail all three so miserably and consistently? Add that in to my mommy instinct that something is just not quite right there, and I know we are headed towards some kind of “hearing impairment” diagnosis. I ignored that inner voice of mine for too long with Karissa, and it certainly did none of us any favors. Kendall already has so many obstacles in her way – if this is one thing I can help remove for her by being her voice and her advocate, I will do it. August 17th seems so interminably far away. She’ll be 9 months by then, which seems shocking to me. I remember Kaylen at 9 months, starting to cruise on furniture, wanting to be everywhere her sisters were, loving to eat real food in her big girl high chair, switching to her big girl car seat for our ride to Florida (ok so she wasn’t quite 9 months at that point, but its what I remember!)

What will life hold for this little floppy ball of love and drool we call Kendall? She is such a fighter already. She handles each new hurdle with a smile on her face and is content to just be held, no matter how she is feeling. She teaches me so much without saying a word, or even a consonant-vowel combo noise. We are so blessed to have been chosen to be her family.

As i know i get a lot of questions about “what next” for Kendall – here’s what’s coming up that we would covet your prayers for:

July 28 – Dr. A followup appointment. As he has been her main doc thus far, not JUST her pulmonologist, it will be interesting to see what he has to say about her past few weeks of metabolic issues, GI bugs, hearing issues and what the other docs are thinking/feeling with regard to her diagnosis. I think she will get cathed tomorrow to get a sample to run her organic acids again to see if the same numbers point to the acidemia diagnosis I was hopeful about a few weeks ago. Hopefully we also  are able to find her biopsy results and see if they reveal anything about her stomach issues/lack of usable nutrition. We were also supposed to have a follow up sweat test for the cystic fibrosis diagnosis, but since that would require me leaving the house at 6 am with no babysitter, I went ahead and cancelled that. Considering her bloodwork has come back negative twice and we already have one negative sweat test under our belt, i think we need to start barking up other trees for reasons for her pancreatic issues.

August 5th – followup with her surgeon at CDH in Wheaton regarding her surgery and button placement. Considering that she has now managed to pull it out twice, and currently has “granulation tissue” growing where her body is trying to grow skin back around the tube, I think we need to have a discussion about other options from here. I don’t know if this will be as simple as changing her button out for a new one (although they are supposed to last at LEAST 3 months, some lasting over a year), or if we need to discuss other kinds of buttons, and/or possibly consider sewing her button into place for a little longer. The surgeon who walked me through putting it back in myself last week did say that kids with very low body fat often have a hard time having a thick enough abdominal wall to stabilize the button under the skin and that he sometimes sews them into place for longer than the normal recovery period. Somebody do SOMETHING because I hope I don’t ever have to do what I did last week again!

August 6th – our highly anticipated visit with a neurogeneticist downtown at Rush University. Supposedly she is able to pinpoint diagnoses in previously thought to be mystery kids, and we know she has already taken an interest in Kendall’s case. I am hopeful, yet very cautiously optimistic that we will get answers out of this visit. I would hope we would be able to get some kind of definitive answer regarding the mitochondrial disease diagnosis – whether that is something we are definitely thinking is near the top of the list, or whether we can go ahead and rule that one out for now. She is listed on the mito disease website as one of their specialists, so i feel pretty confident that whatever she has to say about it will be trustworthy. I am trying actually to keep my mind off of this appointment because I want so badly for her to be THE ONE who can kind of tie the pieces together for us, give us an answer, a direction, a hope that we will find the light at the end of this tunnel, and yet I’ve been there too many times to count. I know our hope lies not with doctors but instead with the Great Physician.

So there is today’s update. you just never know what the next day will bring.

Thanks again for all the prayers, comments and emails. Your words of comfort hold us up through the hard days and give us something to fall back on when things look great.

Hopefully the next update finds all still as calm and well…

till then,

terra

just call me. apparently i am now a trained medical professional.

Last nite kendall pulled her tube out AGAIN. With the balloon still filled up AGAIN. and i was not even close to being willing to go back to the @(@##%@ ER AGAIN!! I noticed it was out when I went to get Kendall out of her car seat – it just popped out from her onesie, which was soaked with other various…uhhh, fluids, which were pouring out of the hole that USED to be plugged up with her button. So i ushered my little herd of cats children inside, told them to eat up cause we were more than likely headed for a few hours in a hospital room, and called the surgeon. After BEGGING him to not send us to the ER unless absolutely necessary, he decides to walk ME through the steps necessary to re-insert her tube. Now I know that a lot of tube feeding moms are old pro’s at this – but I am not. Kendall’s stoma (tube site/hole in her tummy) is still not completely formed, so it’s kinda like throwing darts in a dark room still. I could see lots of pus, lots of formula, lots of bile, and one big black thing, which the surgeon assured me was just her stomach. It definitely put the vom in vomit. So yeah – I got the tube back in, blew the balloon back up with an appropriate amount of water (which it seems may be the problem, her balloon that holds the button in place from the inside seems to be leaking fluid regularly, allowing the balloon to shrink to such a size as is easier to yank out?), checked for stomach contents to make sure it had it in the right place, and then proceeded to worry the entire nite that i was flooding her abdominal cavity with formula. BUT WE AVOIDED THE ER!!!!! WWWAAAAHOOOOO!!!! that made me as giddy as a schoolgirl.

Then this morning we headed out early for Kendall’s hearing test. She, along with every other newborn born in a hospital in this state and i believe the other 49 also, did receive a newborn hearing screening test. She failed the first one in the NICU, but passed the second one they gave her right before we got to bring her home. Karissa also, oddly enough, failed her newborn screen, EIGHT TIMES, passing it only when they had already discharged me and i was about to wheel out of the place. Isn’t that a special coincidence? So given all of Karissa’s hearing issues, plus Kendall’s own lack of response to loud noises, inappropriate or inconsistent responses to other noises, and her lack of appropriate babbling, she was referred for a more in depth test. At this test for Karissa (and Kaylen as well), they were able to identify that there was some hearing loss going on due to fluid in the ears which would be resolved with the placement of ear tubes. I had thought that at worst we would maybe need to put tubes in Kendall too, and go about our merry way.

But of course, nothing is that easy or predictable with Kendall, the mighty Quinn.

she failed all three tests. And by failed I mean she appeared to be deafer than a doornail. They were able to get MINIMAL responses from her left side, but the audiologist ANd her supervisor both were unable to get any kind of appropriate response from her right side. After trying and trying for close to an hour, they finally sat down and told me that there did appear to be a significant issue, and that we needed a further “gold standard” test to determine what kind of loss she has, and a possible cause. I don’t think any of this quite sank in in the office itself. It wasn’t until I was almost home and it occurred to me – she can’t hear me singing to her, she can’t hear the absolute chaos her sisters create, she can’t hear the normal everyday wonderful noises of life we all take for granted. And that made me so sad.

I realize that right now I am trying to put a whole puzzle together with only about a third of all the pieces i need. I won’t have those other pieces until we get the Brain Stem test (ABR) in August. And that is both hard to deal with, and yet reassuring. I have a whole month to try to absorb the fact that my child may be “deaf”. Hearing Impaird. Audiologically Challenged.

Now my own mommy instincts tell me that she can hear SOME things. I know she can. Could she have a bunch of fluid build up like Karissa and to a lesser degree Kaylen did? Yes – but I know it is a little more involved than that. Her body has been through so much, filled with so many life-saving yet ear-nerve-killing antibiotics, born with so many systems not quite ready to be functioning – for WHATEVER reason that is. There are a few theories that will be tested during the ABR test, and i guess there is a SLIGHT chance that it could come back completely normal, and that all of today’s tests were just random flukes. But i can’t hold on to that slim hope for right now. I have to be prepared for it to be something else, and if i talk about it enough, it will be less shocking when it becomes reality. I will always of course HOPE for the best for my baby girl – but I won’t ignore facts simply to make myself feel better temporarily.

If she has a hearing problem, we’ll tackle it head on. If she needs hearing aids, we’ll find the money for them somewhere. If she needs to learn sign language, we’ll all learn sign language.

and

we

will

survive.

We will make it through this hurdle as we’ve made it through all the past ones. It’s just this weeks bump in the road.

Because in a bit of GOOD news for once – she gained back the four ounces she had lost last week. She is a little more smiley this week, a little less cranky with pain. She is working SO HARD at rolling over – i know she’ll get there soon! She was able to endure a whole morning at the zoo without crashing (granted we shoved her full of pedialiyte proactively, but hey, the end result is still the same). She doesn’t seem quite as tired this week.

these are our “inchstones”. They will all add up someday to a “milestone”, but this is how our life goes. It’s the little things, the small victories.

Tomorrow Karissa has her followup dental appointment. I think at least two of her teeth will need to come out, with the other two being strong possibilities. My poor baby – she’s already so self conscious over her cast, and now she’ll be missing her front teeth – what a way to start kindergarten hey? And speaking of that – i finally FINALLY got them enrolled today! Just a shade under a month before school starts. Better late than never I always say…

ANyways – its been a long day. Thank God for the new Sonic by us. I needed all three cherry limeades i had today.

peace out homies.

terra

I need a lot of them right now.

Like the little zit that is right on the edge of my nostril. It’s super annoying. And yet focusing on destroying it and its annoyingness is a good distraction from having to think about REAL LIFE.

Cause let’s be honest, it’s been a pretty crappy week in real life.

Have you ever had one of those? A week where you just thought, ok it can’t get ANY worse than this – except that was only on Tuesday and you still have five more days of getting-worse-ness to live through? Yeah, that’s been this week. Go get your coffee or a nice large coke from McD’s (still only one dolla!!!) and settle in for a nice long review of “My Week”.

It started out ok enough I guess last Sunday  – had a CRAZY time in Kidstown with all those kids, and then a nice relaxing Sunday afternoon. We actually wanted to be social, but by the time I am leaving church on most Sundays, it’s a virtual ghosttown. So we just had a nice family cookout.

Monday was an ok day also, although I found out our darling Monday nite babysitter (and effectively, every other babysitter I could ever hope to use from our church) can no longer work on Monday nites!!!! I have MEETINGS on about 3 out of every 4 Mondays – and Ben is typically gone most Mondays also. Not good.  And if I thought that THAT fact wanted to make me whine, boy did I have another world of think coming…I should have known things were headed south when our darling dietician for Kendall came (on her day off) Tuesday JUST to see what her weight was doing since she’s been having such a hard time. Sure enough, she was down 3 ounces from last week, which puts her at –1 ounce from her weight 7 weeks ago. (and I would just like to interject here God, can’t you PLEASE switch my metabolism with Kendall’s!?!?!? PLEEEAAAASSSEEE??????????) Anyways – my moods are definitely up and down based on Kendall’s weight checks – always have been. I hate that it has to work that way, but for now, I don’t have the oomph to try to lift myself out of this rut. Her dietician and I talked for a good while about what other options were out there, and combined with some of Kendall’s other medical oddities over the past two weeks of having this bug (puking bile out her tube, odd colored/consistency stools, more bloody mucus, dark urine) – she agreed that it most likely was starting to affect her internal organs and processes. We were clearly seeing signs of her liver and kidneys all trying to work pretty hard to keep her stabilized, and all of that work was just wearing her out. Where she typically will last almost a whole therapy session (about 45 minutes), she pooped out after about 20 minutes these past few weeks. Obviously, our much touted trial of the new formula with medium chain fats was not the big hit we all hoped/expected it would be. So I put the call in to her GI to see what the next step was going to be.

Luckily, Tuesday was mostly redeemed by an awesomely super fun dinner with some good friends at one of my favorite restaurants ever. I can hardly believe the amount of good food that we consumed. It was just what I needed – lots of laughing, lots of food – what more can you ask for?

but Wednesday morning came right back with reality. Speech therapy is on the docket early in the mornings on Wednesdays, overlapping with gymnastics. it’s always a bunch of fun. so once again, Kendall was too tired for much in the way of therapy, and was just really uncharacteristically grumpy. Megan (therapist) and I spent a lot more time talking about what to do from here – just disheartening in its own way. Everyone can see that things aren’t drastically improving much, in spite of having a lot of her issues “under control” (the vomiting and eating/hydrating) with the fundo and G-tube. And yet, for the most part, she’s a pretty happy baby. That was part of my hesitation to “take her in” to the ER (as had been suggested by a few people) simply because she looks and acts, outwardly at least, like a happy baby. If you didn’t know what was going on with her, you might think she looks like a happy 4 month old, content to hold her toes and observe the world around her. Certainly you wouldn’t look at her and think “oh my gosh, her liver is working overtime and she is barely above a metabolic acidosis episode”. not that I want a sickly looking unhappy baby. But one who doctors might take a little more seriously before it gets to admission level? That would be nice! anyways -  so wednesday again started out crazy with the DSL man here to try to fix our computer service, Megan the speech therapist, an insanely unhappy Kendall, a frazzled me, the dog barking at the phone guy, the kids following the phone guy around, the babysitter coming to take the girls to gymnastics, and getting the two babies down for a nap so i could tackle Mt. Laundry. Phew. Phone problem was fixed, babies slept, girls gymnasticked, so we all went for a picnic. It got hot pretty fast so home we came for some nice quiet time. Since babysitter was here, I went to my “office” to work, and just as i was leaving, GI doctor calls me back.

We proceed to have yet another hard conversation about Kendall’s status, which ends with the doctor telling me that he feels pretty confident that she has a mitochondrial disease of some sort, and that there is really nothing more he can do to help us. He suggested we get up to Milwaukee Children’s hospital, or some other place with a metabolic/endocrinology team to get a hold of her nutritional status as soon as possible. That was hard to hear, hard to swallow, hard to accept. A mitochondrial disease has definitely been put on the table before, but its something that I don’t want to have to deal with just yet, so I’ve been viewing it as more of a “let’s rule it out” type of diagnosis vs. “let’s see if this is it”. Hearing that there’s nothing more one of the best GI’s in the area can do for your baby who just can’t get good weight/nutrition – that’s a bit of a blow too. It felt hard to breathe for a few minutes after that conversation. But you know, around here we just pull ourselves up by our bootstraps and keep on keepin’ on, right? So I went home determined to start finding the right team to help Kendall, and to make our night a fun family night without a pouty mommy. I encourage the girls that if they can eat in a timely manner (vs. the lonnnnnngggg dragged out meals the middle two like to create) that we will go on a walk/ride together, come home for baths, and watch our show (America’s Got Talent – don’t ask why we like watching this together, its just become our weekly thing…).

so they eat, we clean up, and out we head. Karissa, who has only recently learned to ride her bike without training wheels, takes off ahead of us all. As this got them all (the older 3) in BIG trouble last week, kealey being the typical oldest child, responsible for everyone and blamed for everything, goes tearing after her yelling STOPPPP!!!! STOPPP!!!! Mommy’s behind us!

well, Karissa DID stop, and Kealey didn’t. Kealey plows into Karissa’s bike from behind and Karissa went flying off. As I was able to piece things out in my mind later, apparently what happened is that Karissa hit the pavement teeth first, saw blood, and flipped out. What i SAW happen (from four houses down the block) was Karissa fly, Kealey chasing her, and lots of screaming. Now these girls fight on a pretty constant daily basis. I thought that what I was seeing was Karissa running away from Kealey because Kealey was telling her what to do. Secondary to that I thought perhaps a bee was chasing Karissa or possibly stuck in her hair or EVEN possibly had stung her. I mean they are tearing back to me on foot like they are being chased by the devil himself and I am just ambling along pushing the stroller with the babies in it, determined to be unfazed by the drama of the older two, at least until we get home. Let’s just have a nice calm quiet evening…

Karissa gets to me and blood is GUSHING – do you hear me?—GUSH – ING down her face, throat, everywhere. Out of her nose, bubbling out of her mouth – it was like a horror movie. She is hysterical, and Kealey is too by this point (she hates to see blood, plus she knows that she has caused this massive hemorrhage, somehow, someway). I really truly thought Karissa had bit her tongue off and I had the strange though “oh my gosh, how are we going to find the other half of it? do I send Kealey back to look for it?” But I was able to see enough to see that it wasn’t her tongue that was missing – i couldn’t tell WHERE all the blood was coming from, but I know facial injuries bleed like stuck pigs, so I threw Kaylen in the basket under the seats, Karissa in Kaylen’s seat, and proceed to push 70 lbs of children back around the block to our house. Kealey is put in charge of riding both bikes home (which, she actually managed to do quite well – she’s  a quick thinker!), and I notice on the way home that Karissa appears to have bouncy balls growing under her knuckles. I am pretty sure that at the very least she has sprained her fingers, but, not wanting to be THAT MOM who is always overly concerned about her children’s medical issues/emergencies, I call Ben to ask what he would do if he saw what I was seeing. Luckily he was in the area, just up north, so he said to go to the ER and he would meet me there in a while. Thank God for my beautiful lovely neighbor Diane who met me halfway down the street to take my filthy, tired, freaked out children so I could run Karissa to the hospital.

Let me just interject here that if you DO live in the bolingbrook area, you know that for (well at least since I have lived here!) the last few years, if you needed EMERGENCY care, it was usually best to just jaunt on down to Edwards, traffic be darned, because they were really the only place to get complete care. 3 years ago when Karissa fell off the play structure and had a concussion/possible skull fracture, we went to the Edwards Urgent Care and ended up being transported by ambulance down to Edwards anyways. But since the new hospital has been built, I have been wondering how their ER stacked up. and let me just say – TOTALLY awesome. It’s calm, clean, organized, and QUICK. Maybe because the only two times i have gone were because I had a baby with a hole in her stomach and tube that was supposed to be in its place and then with Karissa gushing blood like she had the plague, but either way – it has my thumbs up now.

anyways – Karissa has a fractured growth plate in her left hand, and her top four front teeth are pushed back in her mouth. We are sent home with lots of good painkiller for Karissa, antibiotics to keep teeth infections at bay, and instructions to follow up with a surgeon to see if her hand will need surgery. She is put in a temporary cast and sling and home we go. It was a LONG day. I could hardly believe, crashing into bed that nite around 1 am, that I had started the morning with the chaos of the phone man coming. It seemed like a week had passed in that one day. I found myself sitting on the couch that nite, after the kids were in bed and Ben had gone back up to his hotel (he had work meetings early the next morning), watching TV and feeilng strangely disconnected from all that had occurred. Like I was watching someone else’s life. Like I should have been dead tired, and yet I wasn’t even remotely sleepy. Maybe it was an overload of adrenaline, maybe it was my brain’s way of just shutting off for a while so I could deal. either way, I knew thursday was going to be crazy by itself so I did eventually go to bed, although I never really felt “affected” by Wednesday’s events.

Thursday morning we have to take Karissa in to the dentist to have her teeth looked at. Thank God that she did not do any nerve damage, nor did the teeth impact her permanent teeth at all. For as bad as her mouth looked, it was the best possible news. The plan there is to give them a week to let a lot of the swelling go down, see if the teeth kind of find new footing in their new positions, and check in a week to see if they will need to be pulled or if we just let nature take its course and have them fall out when they’re ready.  While Karissa is back getting X-rayed and having her teeth cleaned off from all the blood, I am on the phone with two doctor’s offices trying to get the referral up to Milwaukee children’s started. Never a dull moment. We get out of the dentist’s office, race home to pick up the babies, and back in the car we go to the pediatrician’s office for everyone’s yearly checkups/school physicals. All three of the older ones. Two words sum up how that went:CHA.OS.

Luckily, those three were healthy. Other than having to add insult to Karissa’s injury by giving her the school booster shots all Kindergartners must endure, it was pretty ho hum. I love Dr. Natalie, I really do. She asks how Kendall is doing and I give her as brief a rundown as I can about all the weird kidney/liver byproducts I am seeing, on top of the weight loss and the GI shipping us onward, and Dr. N says “ it might be time to have a talk about TPN.” (The Cliffnotes version of TPN according to Terra is that it is food nutrients broken down and delivered via IV into a line that is permanently placed in a baby’s or child’s chest, delivered directly to the heart. It’s not a good step, but can be very helpful in certain situations). I didn’t think Kendall was one of those situations. I have known it could be a possibility for a while, as her nutritional status has constantly bounced around and seems for the most part unrelated to what she eats, how she eats it, or how much of it she consumes. But it was, again, just one more dart into my heart on this crazy week. Dr. Natalie has about 3 of her nurses and a medical student start calling various hospitals downtown to track down a doctor that she has referred us to before, but that I thought wasn’t really pertinent to Kendall’s situation. She is a neurogeneticist (I think…), but comes highly recommended as being basically a “Dr. House” when it comes to pinpointing medically complex and previously undiagnosed kids. Even Dr. Natalie agreed that it was looking more mitochondrial in nature for Kendall (whereas previously she was pretty adamant that certainly we weren’t looking at that as Kendall’s diagnosis). the word “disheartening” just keeps echoing through my mind at this point. It’s all just so disheartening. She’s doing “okay”, she looks “pretty good” most days, but everyone agrees – at what cost, and how long can she keep it up?

How long can your liver work overtime to keep your body stabilized from lack of nutrition, without any continued nutrition to stabilize the liver itself? How long can your body handle wild swings up and down in your blood sugar from a pancreas that doesn’t know whether it’s coming or going? How long can you go without actually digesting and using your food as a nutrient source? I guess as long as God gives you strength and grace for. Cause that is about all Kendall is running on at this point! We are on the calendar to meet with this neurogenetics doctor on august 6th, but Kendall is at the top of the priority list for any cancellations in this coming week. We are trying to gather all of her medical records from both hospitals (Rush and LG) to send to this doctor so that she can get a feel for the complete medical history before we get there so she can make a recommendation to us. By the grace of God, I think Kendall is finally clearing what I have been thinking was a bug from her system, although more and more I question whether it was maybe another metabolic crash. Or maybe one set off the other. 2 weeks of the stomach flu sucks for anyone – especially someone who physically can’t puke and lives on the verge of dehydration all the time. I am hopeful that this week will be a much better week.

Friday we met with the surgeon to see about Karissa’s hand – and THANK GOD – no surgery is required!!! She was put into a hard cast for a few weeks (of course it’s pink and is now bedazzled with rhinestones) – and no gymnastics, no bike riding, no swimming…. AND she’ll probably have it on for a few weeks into school starting, just to give it extra stabilization while she gets used to a new routine at school. When they took the temporary cast off, i was SHOCKED by the size of her hand. It looks like someone shoved a tennis ball into the skin on the back of her hand, and sucked every last ounce of fluid and fat out of her fingers. Freaky.

but the drama queen has her pink “wand” to wave at us all now to remind us that “HELLO! I have a CAST ON!!! How do you expect me to help set the table?!?!?!?!”…..*sigh*. I’ve created a monster. We go back in two weeks to re-xray it to find out for sure when the cast can come off. Cause, you know, I needed one more specialist to fit into our schedule.

and lest I think that that was the end of the chaotic times for this week, Saturday rolled around. Ben was gone all day playing golf and having dinner with some friends, so again, my efforts to be A GOOD MOM, were going to bullheadedly move forward. We cleaned up our mess of a basement, went to find all the random things I needed at the store for Kidstown this week, and came home to clean out the car as a surprise for Daddy. So we get everything cleaned out, run to the carwash to vacuum it, then we come home and I let the girls ride bikes in the driveway while i Armor-all everything. WELLLLL let’s just say I’ve learned two valuable lessons from this exercise – make that three:

1. apparently your car radio being on while you are working with all the doors open drains your battery faster than greased lightning.
2. It’s pretty easy to START a 7 ton truck rolling backwards out of the garage down the inclined driveway. It’s much harder to stop it. The parking brake comes in handy here. And your garage door track can actually withstand a LOT of pressure (ie, a 7 ton car knocking into it) without ruining the garage door itself.
3. When you have an unidentified odor of death in your car and you cannot find the source of it ANYWHERE, put two and two together and realize that your darling child’s blowout diapers that leak through the carseat, also leak through the carseat BASE. Enough said.

So after breaking my OWN finger/wrist (I have no idea what i actually did to it and at this point it doesn’t really matter cause i am NOT going to another doctor for at least a month!!!), I did manage to stop the car before it rolled into oncoming traffic, found jumper cables at one neighbor’s house, found another neighbor with a working car, got the car re-started, the garage door still works, we all ate dinner, and topped off our week by watching an insanely stupidly SAD movie, Marley and Me.

And this, dear readers, concludes this essay entitled “ The week I decided to stop being a coherent functioning human being and instead melt into a pile of caffeinated, drugged up goo.”

The end.

Seriously. Are you still reading??? Did you need a coffee/coke refill? My broken finger/hand is about to fall off from typing this all. I know that at some point the thought “ok surely it can’t get any worse than this” ran through my head – and it usually preceeded the next “worse thing” by about a half hour. Really, I know it wasn’t THAT BAD. It was just kind of… crappy. I wouldn’t wish it on my worst enemy. I know way worse stuff happens to people on a daily basis and my heart truly goes out to them. This was just one of those weeks where you know that old saying “That which doesn’t kill us makes us stronger” is TOTALLY true. One would THINK that it would have made me strong enough to stop my stupid truck from banging into the side of the garage…but apparently I need a few more crappy weeks to get THAT strong.

so that’s where I’ve been. In a glimmer of goodness in all this chaos, Dominicks was having a sale this week on M&M’s, the 10 lb bag. Good thing too. I needed every single one of those little happy pills this week! Shoulda stocked up and bought TWO! Seriously though – the flowers, chocolate popcorn, gift cards and well wishes from all of my friends have been amazing. Your comments here on the blog and in emails and texts and phone calls mean SO MUCH. They are the little bursts of strength I need to keep putting one foot in front of the other some days.

I KNOW this week will be better, even if its just in comparison to this week! I know God has His hand on Kendall and He is guiding the doctors even now to know how best to help her. I know God will use this time in Karissa’s life to ….. i don’t know, make her a better ruler of her fairytale kingdom some day???

I don’t have all the answers. I barely have any of the strength. But I know we are in the Best Possible Hands, being held up and lifted up by an amazing, awesome, caring God. This is all part of His plan – and boy I can’t wait to see how it all works out!

Ahhh and there’s the feeding pump alarm going off yet again… that’s my signal to shut up!

peace out -

 

Terra

Awww – memories!!!

I cannot believe it’s only been two years that I was sitting there thinking Kaylen would never come. I cannot believe how insanely much has happened in this past two years…

You are definitely one tough egg, kaylen hope. You burst your way into this world and have been a virtual tornado of activity ever since then! You were just about Kendall’s age last year when I found out that she was coming, that your babyhood would be cut short, crammed up with someone else’s. How could I have known how very much that would mean? You have had to endure some of what I am sure has been the most confusing times in your life this past year, shuffling back and forth between hospitals, memaw and poppa’s, home, babysitters, new places. You have never been a cuddly baby – always preferring to just be laid right into your crib with your bubba and bobby and occasionally a dolly or bear or two or three. And oh how my arms have ached to hold you this past few months especially, whisper to you how very much I do love you, try to hold on to some of the little baby things about you before you lose them completely. I know it hasn’t been an ideal environment for you – and you are so stuck between being one of the “big” girls and being one of the “babies”. So independent, so strong willed, so protective of everyone and everything in your life – you are going to be one amazing person someday, baby budget.

So on your second birthday, as you are learning new words and new skills (like peeing on the potty finally!!!), I wish for you continued strength, lots of fun, lots of normalcy this year. I hope that as your big sisters climb the big yellow bus to school together this year, that you and I can get back some of our lost time. I love hearing you tell me “mommy – c’mere!! watch wallllleeee” while squeezing your fingers toward me in a “come here” type of motion. Some days you just melt my heart. Other days you make me burn with frustration. But every day I love you more and more. You are an amazing baby and I am so glad you’re mine. I hope you have a very special happy birthday. Hugs and kisses – love, mommy

I can’t believe how long it’s been since I posted!

It’s been a mixture of tiredness at the end of the day, not having much new stuff to report, and feeling like my life is just one big blur of kendall issues, and really how exciting is that to blog about? So – this may turn out to be a ridiculously long post, catching up on everything that has happened in the past, what, like three weeks?

first – Kaylen has just started talking up a storm. It is so cute and fun to hear her new words. She is into repeating everything you say to her, and you can just SEE the concentration on her face trying to figure out how to make that sound. I will say that it has GREATLY reduced the random annoying tantrums because at least now she can feel like she is being heard and understood first before just being told “no” or “go clean up that mess!” or “bedtime!” Some things still come out very “kaylen-ish” – here’s some of my heart-melting faves:

Foofah – as in “more foofah peeze mommy” – this is actually a very grotesque concoction made up of 8 ounces of water, a big squeeze of hershey’s syrup, and then just a dash of milk to color the water (because she is still reacting so badly to lactose). She loves it, and it keeps her hydrated. Plus its so danged cute to hear her ask for foofah!

  Fuff-oo – as in “ I fuff-oo mommy” – love you. So sweet. And our favorite car game is to get Kaylen to repeat I fuff-oo about everyone in the family – “i fuff-oo keeyee, i fuff-oo kissa, i fuff-oo ken-o” and then it progress to fuff-ooing every random thing seen out the car windows (cows, grass, corn fields, etc.) (ps – that’s nail polish on her face – precious isn’t it???)

Good morning sshhyyyynnnnnne!! – she says this to me now when i go to wake her up in the morning – good morning sunshine! – because its what i always say to her. She started repeating it last week and it just melts my heart still. that kid sure knows how to redeem herself, i’ll give her that much!

She also was able to tell me this week that something “hurts mommy hurts” in her diaper area. Then she proceeded to take her diaper off, lay it carefully in the crib next to her and say “off mommy. hurts.” I don’t even know where she learned hurts from – but to put it together – her language skills have to be just skyrocketing. This is seriously all happening in the last month. Prior to that she had a very few words – i really thought we might have to get referred for an evaluation for speech services or to re-check her ear tube placement at her next check up!

Kealey and Karissa continue to have a love hate relationship with each other. I can’t believe that I am honestly at that point of wondering when school starts again! some days they are the best of friends and just play together so well, help me, help each other, work as a team. Other days they just want to claw each other’s eyeballs out, which in turn makes me want to claw my OWN eyeballs out from having to deal with all the screaming! and it doesn’t matter if they’re inside, outside, tired, not tired, too much sugar – it just happens.  I am hoping that once my own attitude improves on any kind of level that it helps restore peace and sanity to my house.

I don’t know how to really address or describe my “attitude problems” other than – i guess its just becoming more apparent that kendall’s issues are long term, and i am still learning to adjust to that. Some days i just deal with it better than others. some days i am filled with hope and optimism that one day we’ll wake up and she’ll be sitting up in her crib babbling away and it will be as if nothing ever happened. Other days I get a copy of this lab report or that test result and i’ll be sunk into a pit of despair over what it means, how to deal with it, how to fix it, what can i google about it. I am driven by a need to understand it all, to make it all make sense, to find her answer, to make it be an answer that we can all LIVE with. It wears me down. i have to make a very conscious effort to start every morning by crying out to God to please give me strength to get out of bed, to deal with whatever the day may bring, to help me be a good mom to ALL my kids, to appreciate the good things in every day. And it’s not like I get a 24 hour pass with that – i find that i have to continually keep renewing my pleas for help, and strength, i have to keep forcing my thoughts away from negativity towards happiness. I think i am maybe making it sound worse here than it really is. Really, we do function pretty well throughout most weeks.

but its definitely an adjustment still.

She does make small little improvements week to week though:

The picture above is her sitting in a very supported position through her hips and thighs, but she is actually putting her own arms down as a semi-support. what you can’t see is that her wrist is bent under in a hyper-extended position and her other elbow is basically backwards, but it’s a small step – figuring out that she has arms that she can use.

she is starting to hold two small toys at once, and reach for toys just slightly out of her grasp. Last week she “problem-solved” for the first time by grabbing a corner of a blanket that a toy was on and pulling that toward her to get the toy. These are all pre-cursors to her actually wanting a toy badly enough to attempt to roll over and get it. Being able to roll over will mean that she has developed core (ab) and hip strength enough to start attempting to sit on her own. Right now she is still extremely floppy, and her joint hypermobility (basically like being double jointed ALL OVER) is seemingly getting worse. Her physical therapist has ordered a special suit for her which will basically velcro her body parts into the right positions, so we can stop doing a “limb check” every time we pick her up for fear that an elbow, knee or shoulder has popped out of joint! It is really tough sometimes in therapy to watch her work SO HARD just to do normal baby stuff, like hold her head up when she’s on her tummy, or hold two toys at the same time, or stay on her side so she can use both arms to play. And yet, its still so amazing to see those little baby-steps of progress.

she’s been tired this week – I think fighting a stomach bug which started with a BANG last week on fourth of july! literally. If you have ever watched a kid vomit and had sympathetic gagging – wait till you’ve seen vomit through a g-tube. It’s like something on the “mythbusters” show – the pressure just builds until one of the ports pops open and spills stomach contents all over the car seat (as happened on our way to church last sunday), or, you hook up her “burping tube” and again, stomach contents come rushing backwards like some kind of gross slurpee machine. It puts the Nast in Nasty that’s for sure. I THINK she is finally coming around from that. It has worn her out all week – she takes about a 2 hour nap after every therapy session, and when she doesn’t have therapies, she catnaps after every time she is “played with” by me or her sisters. I am hoping she is on the tail end of this. It is tough to see her so worn out and just not her usual happy self. She has been tube-puking a little less, although what is coming out the other end is still ….ok i KNOW you all don’t want to know this, but seriously, unless i blog it here sometimes i can’t remember what was happening when and then i can’t be on top of my A game when docs want specifics!

We started her on a new formula on Wednesday. Well actually this is the second of the new formulas we have tried since surgery – the first gave her immediate watery diarrhea, which we mutually agreed was not a viable option for a kid already malabsorbing food and hovering around a failure to thrive diagnosis. This new one is actually not as broken down (elemental) as her regular formula, but it has fats that are supposed to be very easy to digest compared to regular formula fats. Supposedly her reaction to this will give her GI doc a good idea what direction we are headed with regard to further pancreatic insufficiency testing, blah blah blah.  I think its a rather roundabout way to test such a thing but hey, whatever works. I honestly can’t say that I am impressed with the results thus far.  It is back to mostly just mucus, except it happens now about 4 times a day vs once every 2 days, and it has now become speckled with what I can only assume is old blood from somewhere in her GI tract as I don’t think this formula has anything that resembles banana strings or coffee grinds in it. the grossest was yesterday when she had these little slimy black stringy things coming through her tube when i went to burp her. good times.

So we wait till Monday or Tuesday and see what he says. I say tuesday only because her nutrionist will be out then to weigh her again as she is pretty worried about her weight these past few weeks since surgery. She looked to have gained back the 8 ounces she lost while inpatient in June at last week’s check, but the overall net gain for the MONTH was one ounce. for a kid on continuous feeds (or near continuous), that’s a bit alarming. Add in a nice weeklong bout with a stomach bug causing her to have formula/volume intolerance (meaning she was on some pedialyte feeds to keep her hydrated as she would just retch and then puke through the tube any formula), and I am sure we will not be looking at a miraculous gain this week.  I can feel her ribs again and her spine is more prominent than it had been when she was finally starting to pack some ounces on her! I think she’ll bounce back soon – all this formula changing can’t be helpful, but if it gets us closer to some kind of answer then it will be worth it.

I actually had a glimmer of excitement this week after getting a copy of all Kendall’s labs from every inpatient stay.  A test was run on her in february which measured organic acids in her urine. There was one odd finding on there which the doc breezily threw out to us in february as being an abnormal finding, but definitely attributable to her malnutrition at the time. I swear to you every time I hear that she’s malnourished I want to scream! Malnourished is kids in africa who are dying of AIDS and have NO FOOD. Malnourished is poor children who are abused by parents too strung out on drugs to care about their kids. My daughter is NOT malnourished. She is MALABSORBING food because of some condition which none of our doctors can seem to figure out. Ok – now that that’s off my chest…

So in february we were all like – ok – abnormal results mean only that she is indeed failure to thrive, and once we stick this tube down her nose and pump her full of formula life will return to magical disney happiness and weight will be gained and milestones will be achieved. Except it didn’t quite turn out that way. Anyways – so now that I can see the lab reports for myself I can run them through my Google PhD and come up with my OWN theories and answers. One of them was a POSSIBLE cause of her issues known as one of a group of “inborn errors of metabolism”. Basically, her body is lacking one specific enzyme which is, unfortunately, the “instruction packet” for the body on how to break down proteins and fats and use them for energy and nutrition. Imagine getting five boxes from ikea which you THINK is supposed to be a dresser, but you get no little slips of paper with helpful illustrations. Just boxes. and lots of wood. and a handful of screws. You can add all the wood and screws you want, but if you don’t know what to do with it all – you just wasted a whole lotta moolah. And in essence, that is what I THINK is going on with Kendall. I know her docs are probably going to have 308 reasons why she CAN’T have this particular disorder, but its going to take a whole lot of convincing to get me to back down on this one without a fight for more testing. It is the ONLY thing thus far that explains ALL of her issues – the buildup of this acid in her blood (the one that needs the instructions in order to break down the food) leads to hypotonia, fatigue and weakness. The inability to process the food leads to failure to thrive, poor growth, poor weight gain. The ensuing poor nutrition leads to increased susceptiblity to infections. AND – in a coup d’etat of random symptoms – most kids with this disorder do BETTER on antibiotics because it kills excess buildup of this fluid, and allows stomach fluids to stabilize. We have ALWAYS been shocked at how well kendall seems to do when she is in the hospital on IV antibiotics. All my other kids got horrible diarrhea and diaper rashes when they were on antibiotics. For kendall its the complete opposite, in spite of being on some pretty heavy duty drugs.

So anyways – there’s my boxtop medical degree at work. It might not be her answer, and I am ok with that if it TRULY isn’t. It is something that CAN be fixed, and most kids respond SO WELL to the treatment – regular B12 vitamin shots. Seriously. That’s it. i mean, sure, there’s still a lot more involved, like a highly specialized diet, possibly some therapeutic long term courses of antibiotics, IV fluids at the first sign of metabolic decompensation – but seriously. shots of a vitamin. You can see why i am jumping out of my skin to see if THIS is her answer. Such an easy fix! Something she can live with! Somethign we can ALL live with! But – i will try to not get my hopes up too much at this point in time. i will try to wait until I hear from one of her doctors what they think about pursuing this.  I know God’s hand is in this, and on her, all the time.

This week, after a particularly crappy start to the week with the rain on my birthday, the sick baby, the massive amounts of bodily fluids being constantly puked/pooped onto me – there were some bright spots. The first being the arrival of the specialized formula. I had misunderstood our doctor and thought i was supposed to go find this formula in any old CVS or Jewel store. I went to about ten different stores searching for this holy grail of infant weight gaining material to no avail. It was frustrating and disheartening. All of a sudden wednesday morning, the doorbell rings, and there is the fedex man, holding a box with two cans of formula in it. It was a little thing – but it lifted my spirits. God knows what we need, and when we need it. Always.

Secondly – her therapist on Thursday just happened to have a pair of extra shoes laying around that were perfect for Kendall – high top, supportive, firm bottom, right size, and girly. She also happened to have a pair of the supportive shorts I was supposed to have ordered for her in kendall’s size. We got her outfitted up, and there my baby girl stood – putting weight on her legs, using her own hips and core muscles to actually hold her upper body somewhat upright. She was so proud of herself. It was amazing to see. She then proceeded to get very upset at the cute spandex shorts because she couldn’t pull her toes up to her forehead to go to sleep like normal and the shoes made her feet WAY to heavy to pull up anyways. But that’s ok – this is just something we have to do. The Hip Helpers actually help her stabilize her hip joints so that she stops hyperextending them, and helps her brain receive input that her legs are attached.   The shoes work in a similar fashion by putting in proprioceptive input so that her brain can start creating communication pathways between her legs and her brain, so she starts using her legs in a more purposeful fashion, vs. just letting them flail where they may, or tucking them up in frog leg position when she’s tired. When I took this picture of her standing up – I just thought of Forrest Gump talking about his first pair of shoes – “momma said they was my magic shoes”…

she has to wear this combo (shorts and shoes) for a few hours every day (or as long as she’ll tolerate it) so that she can start to use her muscles appropriately. Once she gets her special joint suit that will help her upper body get the same input. I am not quite sure how that will work with her tubey button in the middle of her tummy – but I guess we’ll cross that bridge when we get there. considering that nothing on a state level moves at the speed of light, I am not anticipating having to deal with it anytime before fall at least!

this has turned into a novel length post – i better stop here so that it actually loads up to the server! I’ll try to be better about posting this week- hopefully we all stay healthy for a while! Hope you are all feeling well and enjoying this beautiful summer weather (well, I hope you have beautiful summer weather wherever you are!)

terra

PS – note to self – blog about the dead animals around here, kaylen pulling out all 400 napkins from the costco pack as depicted above, the day of poop yesterday, funny commercial and kittens *inspired by KITTENS*!