I am so tired I hope I can type coherently!

So my sister somehow managed to convince me that it was semi-sane to begin our black friday shopping at midnite Thursday nite. Full disclosure: we do typically start pretty early most other Black Fridays – like 3 am. For some reason, starting at midnite just seemed absolutely crazy to me! But since I ended up with some crazy migraine like headache for most of the day yesterday, going to bed at 6 pm so I could be up for our midnite madness actually sounded like a good idea.

So off we went! Toys R Us was a madhouse. We actually ended up “waiting” till 2 am to go, naively thinking that much of the mad rush would be gone by that point. Wrong. There was next to NOTHING left of the good doorbuster toys that enticed us, and we waited in line for an hour and a half! But it was fun to just hang out and talk. You know, while standing in line. Cause that’s what we do for fun at 2 am. I did manage to find a stranded camera that I had wanted to get for K2, which I purchased, and THEN realized was the wrong one after I got out to the car. So, lovely, a fun return trip. BUT – i got my free box of 64 Crayola’s darnit!!!

Next we drove out to Walmart – not the one we normally go to on BF. This one was OPEN!!!! We got to wait INSIDE! They had the main aisles all crammed with some of their doorbuster deals, shrinkwrapped with signs to “NOT OPEN UNTIL 5 AM”. Yeah right. The vultures were starting to bit by bit pick at the wrapping when we walked in the door at 3:30. We went to get in line for the super secret special gift for kealey that i am not going to type here in case her little eyes happen to see it, and on the way i managed to snag a gift for myself my mom, which was one of my big goals of getting there so score! After an hour and a half, we moved along our little civilized line, got our gifts, waited half an hour to check out back at the automotive counter, and were on our way! We grabbed breakfast and then attempted to go into Target but that place was a freaking MADHOUSE!!!

Noelle pooped out then, but I went to a few more stores to get Karissa’s super secret gift, a fun little something for myself, and then a few more fun things at the craft store. Got home to a still sleeping Kendall and Ben, and i was BUZZING on pure adrenaline I think at that point. But I made coffee anyways, which made the buzziness worse, and when Ben woke up we went to get a new thermometer/thermostat/whatever the heck they are at Lowe’s. (ben’s a huge black friday spender, what can I say?) This was actually probably the best gift of the day as it meant we could use our heat again!

have you ever seen that movie “Monster House” where the house is alive and starts attacking kids on Halloween? (It’s a semi-disturbing movie actually, scary as all get out for a 6 year old and a 4 year old, which is how old my kids were when my darling little brother took them to see it. “but it’s a cartoon!!!” he said. He ate paint chips as a kid, what can i say?) Anyways – that is how our house has felt for the past month. Ben went to check the thermostat one nite about four weeks ago and flung it off the wall. Apparently this did some damage to the poor little thing, because from that point on, whenever the heat needed to click on to maintain the temperature, it would never turn off. Maybe it had Kendall disease because her body does the same thing with it’s temperature except usually backwards! anyways – we have woken up many nites in the past few weeks drenched with sweat because the house was a balmy 86 degrees. It does wonders for the skin let me tell ya! So we finally had to just turn it off completely a week ago. I could run it a little bit during the day to keep it somewhat warm, but had to turn it off at nite and just hope it was warm enough to maintain a livable temp. And luckily, it’s been a pretty mild November thus far! So a thermostat on Black Friday was definitely a good thing!

So most of the big item shopping is out of the way now!

It was a fun morning and I absolutely LOVE the fun times spent laughing with my sister as has been our longstanding tradition! Already counting down to next year poopface! (that’s my nickname for her. isn’t it precious???)

Hope you all had a fun Black Friday! Now on to Cyber Monday!!! WOOOOOTTTT!!!!!

T

That is what we got today in Milwaukee in our 12 hour clinic visit(s).

Options.

Options to help her, options for her care, options for choices.

Our first meeting was with the Special Needs clinic. This is a program that offers coordination of services/specialties for “complex” kids – help trying to condense clinic visits, overseeing the coordination of all the specialists and their tests/notes/labs, one main point of contact for questions/issues/emergencies.  We went over many many many aspects of Kendall’s medical history, current issues, and future goals. The history part was easy, and of course her current issues are ever—changing, but the future part kind of made me stop and think. I guess my future goals would be for her to live as happy and healthy and normal a life as possible – I don’t know….it really made me stop and think. Do I have different goals for her future than I do for my other kids? I haven’t had much time to think about her future, let alone create goals for it! I get very wrapped up in just the minute to minute, hour by hour SURVIVAL most weeks around here; am I a bad mom for not thinking more about her future? Am I just in denial about what the future may or may not be like, or contain, for Kendall? The doctor asked me if she had ever been intubated. And I thought he was talking about the severity of her respiratory issues. He asked me again, and I looked at him like maybe I had answered in Polish or something, and then he asked me a third time “If she ever had to be intubated, would you want her to be?” Oh. I get it. You’re asking about lifesaving measures. How far are we willing to go. I think I answered something like “ well of course we would! there’s absolutely no indication to think it would be a permanent measure for her!” But it was still a little surreal to me. I am not sure why something like that would be brought up in an initial meeting. Maybe because this doctor is “critical care” as his main specialty, his mind naturally works in worst case emergency scenarios. Either way, it was a minor blip in the overall course of the day, but a sobering reminder of the fact that in spite of current great strides forward with weight and developmental milestones – she is still a complex kid. There are still a lot more unknowns to battle through, a lot of mountains to climb, a lot of paths to walk down.

We will find out for sure in a few weeks once their review/write-up is complete if we are officially accepted in to the program, but for now, they are stepping in to oversee that there is some coordination to all her care. For instance, neurology ordered an EEG last week to check on suspected “electrical activity” going on with Kendall. Clearly this is something we need to figure out sooner than later, and they ordered it for the next 2-3 weeks. Scheduling lady tells me April is the soonest they have. So Special Needs is now on the case to find an earlier EEG. They will be coordinating with Dr. Natalie down here so that we don’t need to trek three hours each way for every lab test or clinical assessment. They will be getting all her records from all her doctors to review and compile (best of luck to them on that!). Anyways, in a word, they will be a HUGE help!

So on we went to GI, where a massive backup of patients was actually a blessing in disguise as we were able to let Kendall take about a 45 minute nap in her stroller. We saw a new nurse and a new dietician, so we had to go back over a lot of stuff to catch them up on the history as well as the current issues. Current Issues being: aspiration/coughing/choking on baby foods/solids, more bile dumping and venting being necessary (venting is how we “burp” her since she can’t burp regularly due to her Nissen wrap on her stomach), and her constipation getting progressively worse. I was very interested to hear what Dr. N’s take on all of this was, since I am pretty much at the point of frustration/shoulder shrugging with it all. I assumed we would probably need another swallow study, and that we might need to start her meds back up for motility, but beyond that I feel again like it could be any number of issues causing what we’re seeing and I don’t even know how to begin narrowing them down. Luckily Dr. N does! Or at least he has better ideas than I do!

The plan for now is that we are upping her miralax to try to keep stool soft enough to move through at a better rate. She is currently on an adult daily dose, and that gets things moving about once every 2-3 days. We’re doubling the dose and hoping to get her back to the 2-3 day routine vs. the 5-7 days that she has stretched into. But if that isn’t working, there are OPTIONS of other things we can try. So we were heard, and we have ways to help our baby get some relief for now.

With regard to the swallowing issues – we will be working with their speech therapist up there who works with both pulmonary and GI kids (she will be getting input/info from our therapist here who works with Kendall every week) to see if we can narrow down what kind of swallowing dysfunction she is having. There are two things that could be happening (well, i am sure there could be more, but these are the main two we’re trying to narrow down): Is there a problem with one of the phases of her swallow resulting in a pooling of the thicker food in the back of her throat that is taking her too long to clear resulting in the coughing/junky breathing…OR…is she actually aspirating (inhaling food into her lungs) as she’s trying to swallow? As a part of this, there is a small concern that one of the heart defects Kendall has is putting pressure on her trachea and/or esophagus and causing it to literally be too swollen to swallow correctly. So Dr. N is consulting with one of the pulmo’s from up there to see if they want to do any studies, including a possible bronchoscopy to see what is really going on in Kendall’s lungs. So that kind of took a different turn than I was originally thinking, but again, Dr. N is really HEARING us, and our concerns and working with us and for us to find some help for Kendall.

And after that fun appointment we trucked on down to Immunodeficiency clinic. Nothing new really came up since our last phone conference with the resident where we found out that she appears to have the immunodeficiency with regard to not retaining her vaccine titers. Dr. R (the main head guy), does believe that IVIG may still be an appropriate course of treatment for Kendall given the new info in light of the metabolic/possible mito issues, but is deferring the final decision to Neurology/Genetics/Special Needs. If they tell us that we need to defer vaccines until after her 2nd birthday (or later), or that she will maybe never be a good candidate for vaccination, then we will get the ball rolling pretty quickly to get IVIG therapy set up to get SOME antibodies into her to help her fight infections. Of course the preferred route is that we get the all clear from Neuro with regard to the electrical activity/seizure risk, AND that Kendall gets no major infections this winter, and we get to drop at least one specialist from the roster. But barring that – at least we have Option B in place to help Kendall (and keep me from going insane with feeling stuck between a rock and a hard place).

But our day wasn’t over yet! Down to the lab we headed after Immuno, for what SHOULD have been one of the easiest lab visits ever. We only needed two vials of blood for three tests! That is the least amount she’s ever had to have drawn! Ben valiantly decided to be the one to hold her down (since I have to do it so often and it’s just heartbreaking to do) – and boy did he get his money’s worth with this one! Kendall’s vein clotted less than halfway through the draw, so the tech stopped and decided to switch arms to finish getting what she needed. So MORE screaming and holding ensued. Except that vein rolled. So then the tech called for backup, and the new tech blew the second vein, and a third one. Finally on the fourth poke, she was able to drain enough blood to complete the tests. Poor Kendall’s arm and hand on the right (with two blown veins) was SO puffy and red…she’s definitely a trooper! I hope for her that we can avoid labwork for a good long while now!

And with that fun sendoff – we were on our way home.

It was a very very long day. I am so thankful that Ben was able to come with me, and that the other three girls were able to find alternative activities for the day. I am thankful that we are able to make the drive to find good care for our baby girl. I am very very thankful tonite –for so many things. But i am tired. So much information to both give out and take in today. I can hardly form coherent thoughts in my head.

thanks for reading – if you made it through all of this and understand even a miniscule amount of my rambling!

i hope you all have a very wonderful Thanksgiving holiday! (and happy regular thursday to all my international friends!)

Apples!!!!

Terra

Ok this is sneaky. and semi-petty. i hate having so many blanks on the calendar over there to the right! so i am backposting this about something that I have to do today (which happens to be Thanksgiving!)

you know how crazily motivated I am by seeing a list created with strikethrough font when I finish each item! So today I am trying to figure out what I need to do today in order to get the house clean for family coming over later, and prepare to feed that family! The main game plan is that we are having Thanksgiving dinner/brunch/lunch/meal at a swanky buffet near our home, then returning here for desserts and the traditional scouring the black friday ads to come up with our shopping plan for tomorrow. So it’s not like I am preparing scads of food for tons of people – but I do need to have more than I currently do. including cokes. I feel like i have failed as  a wife and mother – there is no coke in our house right now. I know, I am ashamed. This will be rectified soon!

So, without further ado…

• Finish laundry
• Fold laundry
• Put away laundry
• Vacuum floors
• Mop floors
• Wipe counters
• Wipe table
• Take toys downstairs
• Make shopping list
• Shopping for desserts
• Empty dishwasher
• Reload dishwasher
• Feed babies breakfast
• Dress babies

This is what I got accomplished from 9a-11a.

Doing it by myself with four cabin fevery kids makes it go a tweed bit slower!

My mom used to do this thing where she would like be gazing skyward and say she was imitating someone gathering clouds. it’s hard to explain without a visual. Anyways, that is my darling K2 – my cloud gatherer. If you are my facebook friend, you saw my post yesterday about her asking for a “hot peanut butter sandwich” for lunch. Not the most appealing thing in the world to me – but as I was ready to put it in the microwave she yells “No Mommy! A HAWWWTTT – a HAWWWTTTTT! Like, you know….(and tries to make some gesture with her hands)” I am baffled – she is exasperated, and stomps over the drawer and comes out with a cookie cutter.

“A HAWWWWTTTT!!!!”

oh.

a HEART.

She wanted it cut in the shape of a heart. Got it.

so then last nite she comes home from school and we’re sitting there getting snacks and we proceed to have this conversation:

K2: umm, mommy? what’s a fist? (with questioning look on her face)

me: you know, its like a FIST (showing her my hand in a fist) like when you fight someone, you hit them with a fist.

K2: oh……

me: where did you get that from? did you talk about fists at school today?

K2: no, but i think we’re having one tomorrow at school.

me: (baffled) you’re having a fight at school tomorrow???

K1: (trying to be her usual helpful self) no karissa, like a FIST is like your HAND. you can’t be having a hand at school tomorrow!

K2: NO!!! you know, its like….i sink dey have a lot of umm food, you know?

K1 and me together: OH! a FEASTTTTT!!!!

So ok , they’re having a kindergarten FEAST in class today (their last day before thanksgiving break). Still unsure about this, I email her teacher. Who promptly emails me back that sure enough there IS a feast today and Karissa is supposed to bring the paper plates. For everyone. Which, you would think that having just had  a large birthday party here on Saturday would leave me with a dearth of paper plates just BEGGING to be used, but not so much. We had exactly 8 paper plates leftover. Awesome.

Approximate time between finding out about paper plate need and time paper plates are NEEDED: 1 hour.

Thank God for a week when Ben is actually in the area!

So all the chaos of having to drag the babies to the store, then to drop off karissa, then to go back with tired hungry babies to take yearbook pictures was thankfully avoided. And you know I had had such high hopes of just having one of those days that make you thankful you’re a stay at home mom, where we all play fun games and bake fun things together. Which we kind of did. And you know, it all worked out in the end.

I just don’t know what i’m going to do with that kid. Because once I got the paper plate fiasco all worked out and i could breathe knowing Ben would be home soon, and I had done Karissa’s hair and painted her fingernails per her begging request, i turned on some itunes and she IMMEDIATELY started doing a very close likeness of THE Single Ladies dance to the beyonce song. i cannot believe this kid. No idea what a “fist” is, but boy can she dance.

I think this is maybe just a small glimpse of my life for the next five to ten years.

In spite of all this – i love her to death. Life is …. interesting, with karissa around. Because you just never know when your next family celebration needs a good hot sandwich. Or heart sandwich.

Love you sissy.

love,

mommy

At last!

I can’t BUH-LEEEEVE it is Thursday. Craziness! Where has this week gone to?

Anyways – i am sure there are about 927 things I need to catch up on with bloggage, but right now I am dead tired from cutting out 219 paper hearts for some crazy thing for church. Don’t ask. Cause i really don’t know. I just know that I had the machine, the know-how, and the stupidity to bring up both of these things. Anyhoo. They’re done now, but I am tired. So all I can do for now is show you pictures! Just a few – the rest are in a slideshow which I will also try to include – but will be up singularly soon for your viewing pleasure!

She was not so much a fan of the cupcake! The frosting was ok for a couple licks, and she actually touched the cupcake (which would make her speech therapist and developmental therapist so proud!) – and the rest of the mess was because I smeared it on her!

She most definitely knew the night was ALL. ABOUT. HER. she absolutely adored being the center of attention (I swear I do not know where she gets that from!)

I was so happy with how everything turned out – especially for being so last minute (as is my typical MO for life…) – the cupcakes were adorable, the balloons added a cute touch, my sister found THE PERFECT dress and I was able to coordinate everyone else’s outfits around Kendall’s and – well – we survived!

I’ll have more pictures tomorrow hopefully after a whole nite of sleep!

Hoping that whatever Kendall has been working so hard on fighting for the last day or two gets kicked to the curb with a really super good nite’s rest! Every time something crazy happens with her (like we end up in the ER or inpatient) I hear “oh but she looked so GOOD when I saw her 3 hours/two days/one week ago!” Which is true. She does look very good much of the time. But it’s little nagging things like what we’re dealing with now that she fights, fights, fights – and we all try to not pay TOO much undue attention to- until she can’t fight it anymore and she goes downhill fast because her reserves of energy are all gone. So that’s where we are now. She has been just a little more tired than usual, choking/gagging/coughing a lot more on anything she tries to eat by mouth, more coughing in general than her typical coughing, and just TONS of air being vented out of her every few hours. By themselves – none of these mean much. And even together, it doesn’t mean a whole lot. In the greater context of Kendallage though, it could be the early signs of things going wrong. She has dodged a few bullets this sick season already – I hope and pray she continues to be Supergirl.

So there’s the randomness of today.

Hope you all get some good rest – Christmas is right around the corner!!!

How long do you think it will be till we have our first snowfall around here?

terra

Sometimes I lose track.

Oh yeah, Tuesday. Which means two therapies, one babysitter, one staff meeting, three busstops, and 6 crazy schedules to work all of that around. I’d like to think of right now as the calm before the storm, as my angelic children sit around the table (nevermind that they’re in pajamas/just a diaper) enjoying a healthy snack i prepared for them (if you consider cubed cheese and some saltines to be healthy – which I personally do!), while a nice quiet movie is playing in the background and I get lots and lots of work done. It’s a nice visual image.

the reality is that there are parts of crayons strewn across this room, various blocks and toys also scattered to heck and gone, enough crumbs to feed a small army of mice, and three hundred plastic cups with different fluids in them throughout the kitchen/dining area, and my “angelic” half-dressed children are screaming and fighting with each other over the last three saltines. I am trying hard to CHERISH THESE MOMENTS – to not wish them away too quickly. i KNOW that they will pass – and they will be a blip on the radar screen.

But sometimes, in the thick of it, when I feel like every last red cent we have goes to diapers and medical co-pays (and saltines, clearly), when I am up to my elbows in bodily fluids most days, when i am breaking up fights and enduring whines and screams over the most banal of issues – I wonder if I’ll ever have a moment to myself again! when I have to LOCK the door on the bathroom to ensure that i have no other people or animals in there with me (what is UP with the dog and the cat having to come in there while I am doing my business???), I wonder if there will ever be a time again where I do’nt have to throw up quick prayers for survival in the 4 seconds of peace i can find in the locked confines of my {pretty new bright blue} bathroom.

And I know there will be. These times will pass. And I will miss them when they do. It’s just the day in and day out drudgery of my RIGHT NOW that I am adjusting to. Trying to not take for granted. Trying to enjoy and soak up. I do have great kids. I have a great husband. We have been so very blessed. I am so thankful for that. I am thankful for my awesome friends and family and those who are part of my “support team” – who can keep me going day to day, even on days like today when I forget what day it is.

My dear friend Emily wrote a post about this very thing a few days ago – I love the title – “How to Not Lose Yourself in a Decade of Other People’s Crap – Literally”. She makes some a lot of valid points about doing SOMETHING, anything, to try to keep a little bit of yourself in spite of all the “mommy-ness” of mothering. My problem, however, is that there’s TOO MUCH other things that I have great desire to do. I mean, they’re all good things, but really, who has time to have crocheting, knitting (kind of), photography as a hobby, photography as a business, scrapbooking, digital scrapbooking, blogging, and cutesy crappy craftiness as HOBBIES – all while trying to be a mostly single parent to four kids, juggle one’s special needs/therapies/medical appointments, and work PT at the church? I know. I think I need a lobotomy. It’s just that life is SO FUN. And has SO much to offer. And I want to cram it all in NOW!!!! (Not sayin’ I’m impatient or anything…I just…..don’t like to do a lot of waiting for things.)

So anyways. that’s where my head is at today.

Because its easier to try to analyze that than to deal with the impending chaos of today’s schedule. And tomorrow’s schedule. Which includes more children ferrying and a jaunt up to milwaukee. But maybe by thursday I will be able to breathe a little bit. But i want to say this too today – I could not do it without a VERY strong support system – the foundation of which lays upon the shoulders of my wonderful husband Ben. He  disciplines via phone when I have lost all authority in the midst of the dinnertime chaos, he re-arranges his schedule as much as possible to help relieve the crunch that can happen with all that we have going on, and in general, he is just a great partner in crime. Because sometimes he gets that you just need a little Blizzard therapy late at nite after a hectic day.

It also comes from my dear mother who is willing to wake up at 4 am to drive down here to help avoid the chaos of dispensing three children to three different locations at 7 in the morning before our drive. And from friends who have brought meals, sent jokes to make me laugh, been our prayer warriors and partners, and our celebrators in the good times.

So what does your support system look like? For whatever you are dealing with – who helps you carry your burdens? Have you told them thank you lately?

I for one, have a lot of thank you cards to catch up on…

In between all the other stuffs.

More to come later folks!

terra

Just a new post for you to leave birthday wishes for Kendall here if you so wish!

Thanks for your prayers and for celebrating this awesome day with us, both near and far! We’ll have a piece of cake for our dear friends and family who cannot be here to consume one themselves, and of course redonkulous amounts of photo’s to be shared tomorrow!

Happy Kendall’s Birthday to you all!

terra