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I love these pictures because I love this side of Noah. He is a gazer, my little contemplative, and I love to see the wonder and intrigue in his little heart. It’s amazing how certain aspects of our personalities are there right from the very beginning. Noah has always quietly and purposefully observed the world around him – with a remarkable depth in his little gaze… oh to know what is swirling in his little heart and mind…
And the wonder of it all almost always turns into overflowing joy… wonderfully contagious joy! I love this little boy… he is the miracle and joy of my heart. Can you tell?
In other news, the neurosurgeon appointment was moved up and so we saw him on Tuesday this week. He is apparently one of the best neurosurgeons in the country, and he only sees patients on Tuesdays. So that is probably why we had to wait five hours just to be seen. The resident came in first, and he actually explained an os odontoideum for the first time, which was helpful. Then we saw the neurosurgeon for what amounted to approximately twenty or thirty seconds total – during which time, I think I was first insulted and then told I needed to have a CT and come back. To be fair, the resident tried to prepare us with a nice little disclaimer about his mentor - something about how great he was… world renown and so forth… thus, he doesn’t spend much time with patients and is very direct. (Apparently, when you are that amazing, you don’t even need to talk to your patients anymore). So I guess we should have been prepared for it, but it was still hard for both of us. Afterwards, Stephen wrote a speech to the doctor in his head and I didn’t say much at all… until finally in the car, I just cried.
I’m not sure why I cried to be honest. The reason the doctor wanted me to have a CT is because he doesn’t think I even have the os odontoideum, which would be great news. I think I’m just tired of doctors… and of feeling like we’re just running around in circles accomplishing almost nothing by seeing them. I don’t have any delusions or false hope when it comes to medicine anymore. I realize that it is what it is… sometimes it helps, sometimes it doesn’t… and I know that doctors are just people with M.D. behind their names, far from the ’gods’ of our imaginations. But it would be nice to have a doctor actually read through those papers they make you spend an hour filling out beforehand OR to sit down, ask you what is going on, and when you answer, LISTEN to what you have to say OR maybe, just maybe, remember as they are talking to you that you are someone’s wife, someone’s mother, someone’s daughter, someone’s friend… that the person sitting across from them could be someone they cared about and how would they want that person to be treated by the one they came to for help… is that too much to ask?
My rheumatologist is that kind of doctor. The orthopedic surgeon that did my last hip replacement (for free because the Lord told him to)was definitely that kind of doctor — he was an incredible surgeon too so he was the whole package (he’s retired now sadly). And really, Noah’s doctors are awesome too — pediatric doctors are usually great though. But unfortunately, in my experience (which I think is pretty extensive for a thirtysomething year old), the good ones that are skillful physicians but still see a person sitting in front of them seem to be few and far between. I’m grateful that the Lord has led us to some of the few though. And truthfully, if I had to have a neurosurgeon (i.e. if I had to have brain surgery), I think I’d rather have the ‘world renown’ one with all his pomposity than the nice guy or girl that isn’t a good surgeon (not exactly the kind of surgery that allows for significant margin of error)… but wouldn’t it be nice if the “best” came with compassion… kind of like, oh I don’t know… the Great Physician (Who has every reason to boast, but humbled Himself that we would be healed). Okay – sorry, just blog-venting… would that be ‘blenting’?
Anyway, today I had the CT, and in about a week and a half (the Tuesday after next), we see the nice doctor again. And this time we’ll bring books and notepads and such to occupy the time during our wait… and hopefully, we’ll be better prepared for the twenty seconds with the doctor too.
I feel like I’ve been living in the reality of Mark 5:26-28 these last few months. My Hope (capital H hope) is not in any doctor or medicine or anything this world has to offer. It rests solely in that Man who was and is and will always be God walking through the crowds wearing His heart out on His sleeve. If I touch even the hem of His garments…
More to come… another post soon.
The last 48 hours… well, they haven’t exactly been the best.
Perhaps it is the debilitating nausea that has taken up residence within and become my constant companion for better or for worse… which is a dumb thing to say, because there really is no “better” side to this relationship…
Or maybe it was the five times in a row I threw up yesterday as a result of the aforementioned nausea. And it needs to be said: I will never eat a roast beef sandwich again. Trust me.
Or it could be the fact that the only thing I can keep down is noodle soup, grapes or jello right now…
Or how bout those fun little stabbing pains shooting up and down my neck or the weird bouts of numbness, popping and just generally disconcerting happenings in my spine…
But my favorite part of the last 48 hours may have been today when Stephen and I were sitting with my doctor (that I see once a month) talking about the newly discovered “os odontoideum” for which I have now been referred to a neurosurgeon… and the words “skull falling off” and “severed spinal cord” actually came out of the doctor’s mouth. Stephen and I had to replay that conversation on our way home and ask ourselves if that really happened…did he really say that… and if my skull is going to fall off, what might that actually entail?
Anyway, it’s been one of those weeks already but despite the ugliness of it all, there is still happiness to be found…
Like last night, when Noah woke up in the middle of the night, Stephen had been booted out to the guest bed (for his own sake) because of how sick I was, so I decided I wanted Noah to sleep with me for the rest of the night. (Now I can only count on three fingers how many times he’s ever done that so when it happens, it is a real treat for him… and for me.) So even though I felt terrible and I couldn’t seem to sleep because of pain, I had my little Noah with me and he was a little cuddle bear all night. He slept right next to me the entire time and at times, he even tickled my face and held my hands. He is SO sweet. I love that little boy more than words could even begin to describe…
And today at the doctor’s office, I felt lousy… but Stephen went with me and let me lay across his shoulder the entire time. I was literally “leaning on my beloved” and it was good. Sometimes, he doesn’t even know he’s doing it, but Stephen strengthens me in a way that no one else can. Today was one of those days.
And then tonight, Stephen was so tired, but he made the sacrifice and actually watched a movie with me. I know, stop the presses, right? Stephen watching a movie is something that honestly happens about as often as Noah sleeping somewhere besides his crib. But tonight (for me) we cuddled up and we watched a movie… and we laughed and we cried and we said good night.
And so I guess I better say good night now too. It’s been a long two days… good, bad, and many shades in between. But the sun will rise again tomorrow and mercies will be new. Of that we can be sure…
So recently, due to obvious limitations in our life and because I want to try to reduce the load that my husband is carrying (uphill, I might add), I have a new interest… all things that can be delivered to your front door without breaking the bank. I am crazy-order-things-online girl these days, and I’ve gotta be honest - I’m addicted. Stephen is a little worried, I think (smile). Seriously though, you can save so much money if you shop around and compare prices… and for non-perishable things, buy in bulk (which is just smart in these here times we are livin’ in anyway). And it saves time and energy as well — so money, time, energy… these are things that need a savin’, yes?
So all that to say, I discovered something new that we are trying out, and I am very excited so I had to share – especially if you are in the Kansas City area. It’s called Door to Door Organics. They deliver (without charge, I might add) locally grown organic fruits and vegetables right to your door (here in Kansas City). You can sign up for different size boxes and the week before each delivery, they send you a list of the fruits and/or veggies in season that will be delivered to you that week. You can go online or call and change things out if you don’t like something too, and you can cancel or suspend your orders at any time. The prices are very competitive — around 50% less than buying the same things at Whole Foods – plus, you are supporting our local farmers.
Anyway, we are starting small and only every other week, so I’ll keep you updated on how we like it. So far, we are very impressed.
Please pray for us this week if you think of it. I’ve been very sick all week, and today (probably because of the weather) my body kind of freaked out too. My joints are barely movable and my neck is severely bad (I can’t move it back or side to side, and I have to have it stabilized by a neck brace to even stand the pain). So far, neither Stephen nor Noah have shown any signs of sickness – Praise God – so we are praying that they don’t get sick at all. For our family, it is really hard if Noah gets sick and almost impossible if Stephen does… just because of all the other circumstances.
Also, keep praying for baby Stellan and for Jennifer (MckMama) — they really need our prayers right now.
First let me thank everyone (both known and unknown out there) again for your concern and prayers for Karli – it has truly been a great blessing and encouragement to our hearts. As you can see from recent posts there have been some slightly ‘better days’ lately for Karli but unfortunately these are often followed by hard ones. The first post that started off this series of updates on Karli’s health described what she has been going through as a really long, hard ‘flare’. So to use that as the reference point, I guess you could say that there have been some glimmers of hope that this thing has an end, but she is still very much in the thick of it.
Several times recently Karli has mentioned ‘the patch’. The patch is a tiny little transparent sticker that goes on Karli’s back that somehow holds a super-duper lot of medicine that slowly gets released into her skin and thus into her bloodstream where it is whisked to all of the parts of her body screaming for relief. The patch is our friend. There is definitely a ceiling on what it can do but it has definitely made a difference in Karli’s overall pain levels day to day. So praise God, from whom all blessings (including little drug-patches) flow.
In the March 10th post Karli mentioned that the new doctor she saw ordered x-rays of most of her major joints as well as some comprehensive blood-work. Both rounds of tests yielded some expected and unexpected results. We were shocked to discover from the x-rays that Karli has severe degeneration in her joints due to the disease process. Just kidding – we knew that. What we didn’t know was that in Karli’s neck there is a rare abnormality with a long name that has the potential to be very negative and very dangerous, specifically to her spinal cord. Please pray that if this is the case the Lord would heal Karli’s neck and completely eliminate this concern. The doctor referred Karli to an excellent neurosurgeon who should be able to assess the condition of Karli’s neck in a lot more detail. It will be three months before the first opening for an appointment, so until then we are just praying and waiting to find out more.
The unexpected/troublesome finding from the blood-work was twofold: some elevated levels related to her liver and some low levels of certain vitamins. Though the doctor has ordered more tests to find out greater detail about both of these, the good news at this point is that they seem to be treatable through fairly straightforward means. We will keep you posted (pun intended) when we find out more but for now you can just pray for Karli’s liver and overall health. The severity of the pain that Karli faces every day and the medicines she is forced to take to deal with that just take their toll on her entire body and cause lots of ripple effects in all sort of things you wouldn’t naturally think of…
Thank you again for your prayers – we are so grateful. For those of you who are local there are a few times a week where students have organized gatherings specifically to pray for Karli. If you would like more info about that just email me. Some of you have also asked about how you can support us. Probably the easiest way (and tax-deductible) is through IHOP staff support. Just write a check to the ‘International House of Prayer’ with a note included (not on the check itself) that has our name on it and send to:
IHOP Staff Support
3451 East Red Bridge Road
Kansas City MO 64137
Just wanted to write a quick update… sorry it’s been a while.
Yesterday we saw the new doctor – a specialist at KU, which is one of the teaching hospitals here in KC – and we really, really liked him. I had to get a bunch of x-rays on all my joints and have about a pint of blood drawn (or it seemed that way anyway). He has more of a whole body approach in looking at the disease (which is first reason for all the tests) and he also wants to make sure there isn’t a secondary inflammatory disease working with the skeletal dysplasia and precocious OA that we already know about. Which hopefully, there is not anything else going on. He spent a lot of time with us, which is always nice (and very atypical), and I think my favorite part was that he gave us his personal email address to keep him updated on pain control, ask questions, get lab results or prescriptions, etc (something that I have NEVER even heard of a doctor doing – and I think he actually does it with all his patients).
I am also starting yet another new medicine. This one is a patch that delivers medicine for three days at a time, and actually, there is a good possibility that this one may be the one that finally works or at least gets me out of the severity of this flare. We hope so anyway. I will be happy for the day that I can throw most of these bottles of pills away, that is for sure. Other than that, there is not much to report. I’m still in the flare. I have some days that are better than others… but the days when the weather changes (like yesterday and today - rain and then cold) are always pretty brutal.
I’m holding out for Song of Solomon chapter 2 right now… oh for the fruit and fragrance of Spring.
“See! The winter is past;
the rains are over and gone.
Flowers appear on the earth;
the season of singing has come,
the cooing of doves
is heard in our land.
The fig tree forms its early fruit;
the blossoming vines spread their fragrance.
Arise, come, my darling;
my beautiful one, come with me.”
We have also just been overwhelmed with the love and support that has been extended to us by our wonderful friends, family and by the students at IHOPU (to the students: wow… seriously, I don’t even know how to express how much you all have blessed me this last week… I am undone). We’ve had prayers and meals and encouragement and support by the bucket-loads…
For real, I’m talking big, large buckets 
And we are so blessed and so eternally grateful. (I keep thinking that it can’t be long before those bowls tip from all the prayers pouring in). So to everyone that has written, prayed, prepared a meal, given a gift, and just loved us in this season, THANK YOU… with all of our hearts and with eternal gratitude, THANK YOU SO MUCH. There are not words… but I am certain that if you listen closely, you will hear the very beat of His heart saying, “Come, you who are blessed by My Father, inherit the Kingdom… for whatever you did for the least of these, you did for Me.”
Woke up today and the face and neck rash is pretty much gone!! Yay!
And Jesus gave us 4 inches of snow for our anniversary… we were so excited when we woke up this morning. It really felt like a gift from the Lord to remind us of His faithfulness and care.
As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
so is My word that goes out from My mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it. (Isaiah 55)
Amen.
We also have our other little miracle and gift who serves as a daily reminder of the greatness of the heart of God and the gift of life. Isn’t he cute?
Well… yesterday was our anniversary, so I didn’t want to post about health stuff. But oh how we continue to need your prayers. I decided to write the update this time because being vulnerable is always good for the heart and it is my way of being able to answer several emails at one time. I saw the doctor again Friday. He took me off of two medicines (one just lasted 7 days – it helped but it’s not something you want to take long term – and the other was a terrible medicine with side effects that I just could not handle). And of course, he put me on three more. Yes, that’s three, in addition to the many meds I’m already on. One pill is just to protect my body from the other pills. Ugh. If you know me, you know how much I absolutely hate being on prescription medicines (I feel like I am taking poison or something), so I guess it’s a testament to the desperation of this hour. Needless to say, we are praying that this will be as short-lived as possible. Even so, for now, I am grateful for pharmaceuticals… they are the only way I could make it through this (outside of a miracle, obviously). I see another specialist in a week that my orthopedic doctor referred me to after the results of the bone scan. The doctor I saw yesterday seems hopeful that the new doctor will have more insight and suggestions so we’ll see.
Prognosis right now is still not so great. I’m still in the worse flare I’ve ever had… and I am so ready for a reprieve – there are no words to explain. Treatment right now is mostly medicines (trying to find the right ones) and rest (sleep is a bit better, but I wake up when pain medicines wear off). I will likely have to have epidural injections for my neck down the road, which might help with the pain in a short-term way. I would love to be doing physical therapy as I am unbelievably weak (I couldn’t even walk into the appointment yesterday) and most of my joints have almost no movement or range of motion, but my doctor won’t let me until the pain is better managed. I guess it would hurt more than help right now, but I am so ready to be doing something pro-active. Never thought I’d look forward to PT. What a weird season.
Anyway, more than anything, I wanted to say thank you to everyone who is praying and supporting us. I can’t tell you how grateful I am for every prayer offered on our behalf. That is the kind of friendship that will stand forever. And we are believing that those bowls are going to tip soon and justice will come speedily (Luke 18). Thank you with all my heart…
Resting in His sovereign mercy,
Karli
PS – on top of everything, I seem to have broken out in this awful rash all over my face and neck. We have no idea what it is from. It’s so weird… when I had my hip replaced I broke out in hives from lotion and when I had my second hip replaced, hives again but this time from tape, and when I had c-section with Noah — hives again all over my incision, my stomach and my back from adhesive spray (because they were trying to avoid the tape that gave me the hives the time before). And I just remembered that I got a rash on my face too with the c-section. And here I am in my worst flare ever and I have another major rash. What is that all about?!! I mean, seriously… right? So please pray that this goes away. It’s not only incredibly unattractive, it’s painful and just kind of annoying. (It’s not from medicines by the way – we made sure at the doctor yesterday).
