Sadie's most recent MRI results

Here is the e-mail i sent my family this afternoon. Blood work is done and now we wait...again.

"You can send this out as we are asking for prayer. Sadie had her repeat MRI today at 10 am. At 3:30, Dr. M called us with the results and said that they found a change. There is a thickening of the pituitary stalk that they had been looking for and this is a change from the previous MRI results. (Repeated MRI's were to look for "changes" as a small, slow-growing tumour may not necessarily show up in the first MRI's.) He said that this could either be nothing, or it could be very serious. It could be one of two things:
1. a brain tumour
2. Langerhans Cell Histiocytosis (which her history leans more towards)
From what I've read in the past, both would require chemotherapy. Dr Marks has already talked to the Hematologist/Oncologist and said that he was going to call them back after he got off the phone with me. He is sending a requisition to the lab for us to get done and he said that we should have an appointment with Hematology/Oncology within 1-2 weeks. I just called the lab and the rec came in so we're going to go in tonight and try to get it done before the long weekend. Please pray for Sadie and for us as we navigate these waters with the kids. I am usually a woman of too many words and i don't want to say too much, or the wrong thing, or jump to any conclusions. Just to handle each little piece of information as it comes. Asking again for wisdom. -j"

curt update

Just thought i would put this update here as a post instead of a response to the comments section as so many have been asking lately about Curt. Once again, we realize that sometimes the doctors' information can be confusing. Maybe they are learning/brushing up on information as they go, or the medical community's stand on things changes. Anyways, at first we were told he would be in surgery as soon as possible and it would be all over before mid Feb. We were told that Curt wouldn't want to be on blood thinners for too long. THEN, (probably after our GP talked to the vascular surgeon) he informed us that the specialists likes to keep a person with this kind of a blood clot on blood thinners for awhile first to see if it will clear on it's own. Curt's particular reason for getting the clot is a possible bone structure problem. So far they think that his collar bone and first rib are too close together and pinching off the thoracic veins. I hope this is the right lingo. IF it is a bone anomaly, he will need the surgery to remove both the clot and one of the ribs anyways! SO! Here we sit. His shoulder and arm feel a little freakish but his blood levels are good now so he does not need to go in for extra injections at the hospital anymore but will just be on the oral blood thinners until further notice. He gets his blood levels checked once a week as well. Other than all that, he's feeling great. Thanks for asking. :) -j

It's not about healing....

I've had this post simmering in my "drafts" box for awhile and I know it's not really ready to be posted. There is *always* more to say and to learn and some topics work better as an ongoing conversation than a one sided blog entry... but here goes:

The topic of healing has been a hot one in our home for about 5 years. When Darren was first diagnosed with epilepsy we sought out people to pray for him. People we trusted. Other people offered to pray as well and we let them. I think it was through this time that I really started to learn something about people...and about God. We have had incredible, consistent family support through prayer and that has meant so much to us but we were also blindsided by comments made by people along the way in regards to prayer and healing. Maybe because the problem was epilepsy. It was too tempting for people to not mention the possibility of "demon possession". After all... epilepsy has always been a mysterious illness and was thought to be related to demon possession throughout history right? That fact is just too tantalizing to let go of. We had one pastors wife say right in front of Darren. "Well, epilepsy is RIGHT UP THERE with demon possession." Right up WHERE?! I was horrified and immediately regretted having her and her husband pray for Darren. An older uncle of mine called just this morning to regale me with "hilarious" stories of all the "epileptics" he's come in contact over the years and how HE just commanded the demons to come out. He even proudly told me of how he sat on one man during his seizure (to control him) and then advised me that a person should not lay hands on the "epileptic" (reads "demon possessed" to him) because the demon just may enter the person praying. I informed him that Darren's problem was not demon possession but a physical problem that was pin-pointed by MRI as lesions on his brain but he just ignored me and went on to his next story of the other "epileptics" he had encountered (and most likely offended) over the years....and how He alone had dealt with it and commanded the demon out. (Of course while not touching the person.) I made the valid excuse of being in the middle of homeschooling and got off the phone. Other people have mentioned that perhaps illness has come because of some hidden sin. (If Darren wasn't healed after they had prayed then it must be our fault. Some claimed that now that they had prayed, that healing was surely on it's way. (More than one.)...hmmm pride? Some have tried to "speak for God". Some have said that we just have to "claim the healing". What is that supposed to mean? These are the same people that like to "claim" everything else good in life while denouncing everything hard. (Good comes from God and Bad comes from the Devil right?) It's just not true. God does not guarantee us a "free ride" of ease and relaxation through life. ACTUALLY, He promises that we will be mistreated, misunderstood and will face hard times. And what I've found to be true is that hard times have brought me closer to Jesus. It has been the hard things that have defined and solidified my faith and revealed faith I never knew i had.



"In this world you will have trouble. But take heart! I have overcome the world." John 16:33



"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." 2 Corinthians 4: 8+9



Another thing I've found to be true is that God has used the difficult things in life to reveal to me who He really is. Over the course of the years, the topic has gone from "healing" to "what really *is* the character of God"... and now to "what should my attitude/perspective be in the light of illness." I have often described to Curt how when life has gotten especially stressful that i get a picture in my mind of staring into the eyes of God in silence. It has been a recurring picture ever since Darren was diagnosed 5 years ago...and then through Sadie's ordeal...and every little thing that wants to set me off into a ball of worry. The feeling that permeates that picture is the one you would get from catching the eyes of the one you love across a crowded room. In the moment your eyes meet, you both know what the other is thinking without talking. God seems to have been "silent" through all our ordeals... except for this picture. But that one image has been the biggest source of comfort to me. He knows the thoughts i can't express in words.

I have also found comfort in ignoring the voices (so called prophecy) of the multitude of people that feel like they are "hearing from God". Ignoring books, sermons, comments of those around me and really focusing in on the Bible alone as my source, and His comfort which is new every morning. I *know* my God, I recognize His voice. His "silence" isn't that he isn't speaking. It's that He is working out something in me that isn't about the words He is saying...It's not about the show, or the emotion... It's deeply personal and peaceful and a re-working of my idea of who He really is. I'm hearing Him... just not in words. I see his face, His eyes....and they are on me...and they are on you. -j

Feeling like "Jack"

Curt had pain in his shoulder for a couple days over Christmas... and then his whole arm started to swell and the pain went up into his shoulder and neck. Last night he couldn't fill out a fax he was sending so i had to do the writing for him. I told him he'd better get in to the Dr. We went to the after hours walk-in clinic and wouldn't you know it, no one showed up to open the clinic! He debated going to emergency as i was worried, and although he wouldn't admit it, i think he was too. He waffled and wanted to go on a planned skidoo trip the next morning. I told him that he'd better cancel. He did. I called the Dr. this morning and got him in at my clinic right away. The Dr. took one look at his arm and knew what it was. "Venous Thoracic Outlet Syndrome". He has a blood clot because of his ribs pinching off a vein in his chest! I am so thankful that he cancelled that trip and got in to see the Dr. He was sent right away to the hospital to get a shot of anti-coagulant in his belly (he will have to go back every day for more shots) and a prescription of blood thinners. Ultrasound next week and it looks like surgery to remove the clot and possibly a rib! My goodness! Carrie was watching me as i was reading up on Curt's medication. "Mom! You're just like "Jack" in Robin Hood!" (She is Robin Hood's resident medic.) Yeah, I'm feeling it lately too!

As long as...

A family friend recently asked Curt if he was looking forward to having a boy or a girl.
"Well, it doesn't really matter!"
She laughed and then said something that a person hears a lot when they are expecting:
"Yeah, i guess so. As long as the baby is healthy!" Curt, without thinking blurted out, "Actually, that doesn't really matter either." She looked a little taken aback and then Curt tried to explain why he had said that. "Well, i know what you mean but... We've had 6 children born to us. They were all "healthy" and "perfect". Seven years after Darren was born he was diagnosed with epilepsy. At three, our daughter Sadie was diagnosed with a rare hormonal deficiency called diabetes insipidus. There are no guarantees in life and although we don't want them to be in pain or suffer, we wouldn't trade them for any other two healthy children in the world." When he got home that night he brought up the conversation with me and how he had surprised himself with what he had blurted out. "But Jess, it's true." Yeah, it is.
"As long as they are healthy..." what?
-then i'll be happy?
-then i'll be thankful?
-then i'll know that the pregnancy was "worth it"?
-then i'll know that they will have an easy life and not worry?
not true.
Jesus,
My children are in your hands. I give them back to you. With their strengths, with their frailties...."as long as they belong to you...then I'll know that they have been *fully delivered*.

Nothing good happens after midnight.

o.k, o.k....i know it's midnight and I've learned over the years that my mother was right. "Nothing good happens after midnight." These are the hours that my worries drag me out of bed. Why did we have to watch that stupid episode of "Little House on the Prairies" on the way to x-country this afternoon? Curt and I sat in the front of the suburban and listened to the soundtrack of the episode the kids were watching in the back. The one where Mary is kicked by the horse, gets an infection and has to go to the big city hospital for surgery. I've seen it before...I know it ends in blindness. I crawled into bed tonight and layed on something soft. It was "Blaash", Sadie's plushy lamb her uncle Neil gave her when she was in the hospital. Whenever i bury my nose in it's softness, i smell my sweet Sadie. I keep trying to forget that she has to go back. I just want to believe that she's all better. We have a synthetic hormone that's working for her....
Can't we just leave things the way they are?
Do they really have to look for a tumor?
I'm afraid.
I'm learning that I'm not a good fighter... Maybe we all feel that way though sometimes?...I hope it's not just me.
"So much pain to avoid, so little time."
God, I need your strength, your wisdom, your heart for this leg of the journey. I need you.

Sitting it out.

Since my last post I've had tonnes of things to write about but no time to sit and write. It's been one of those months where I feel like I'm on the end of a line of kids playing "crack the whip". I remember playing that game in elementary school at the outdoor ice rink during recess and at the all-popular "roller rinks" of the '80's. In the case of the roller-rink, the music would be pounding, the disco ball dutifully twirling, creating a dizzying array of lights. The huge line of kids holding hands would get longer and longer. As we would near the turn, there was always a moment of sheer terror. The speed with which we were all blistering past the spectators and the generous sweat slithering between prepubescent hands always proved to be a bad combination. Especially for those situated on the end of the "whip". Out of control, I would scream and feel my grip tightening...to no avail. The next thing I knew, I was not part of the "party" anymore. Instead, I was the only roller skater hurtling off into the twirling oblivion of the roller-rink. That's the image that has defined the last month for me. Thrilling, fast paced, surrounded by friends but it ends badly. Here i sit, a lump of throbbing headache and stomach upset. I slept my morning away. Was woken up by a good friend calling in her last weeks of pregnancy worried about pain. (Being her only friend who has birthed 6 babies, i am her honorary "Dr. on Call") Then woken again by my father in law excitedly yelling through the empty house because he found that one of our hens hatched out a record batch of 16 chicks today. Then again by Curt. He took one look at me. "You don't LOOK sick." I still don't know whether to be flattered by that comment or offended. "When have i ever taken to my bed all day?" He smiled. "Maybe you just want a day off?" He took the kids to pick up hay, then to sell a billy goat, now for a rowdy run through the local wildlife park. Usually, i ache to be a part of the action, but today, I'm going to be content to sit this one out.

Sadie: a water fight of one.

This is a picture of Sadie after a water fight but it closely resembles what she looks like most of the time around here these days. She has been sick with a hacking cough and stuffed nose which translates into ineffective hormone. The hormone is administered by me blowing it up her nose through a tube and it's just not gettin' through. I tried Dimetapp to clear her up before administration but it's still not great. Looking forward to this cold passing so that she can have relief from her "wet and thirsties" The fridge water dispenser is slopping water all over the front of the fridge and floor all day, I picked up 7 cups Sadie had strewn all over in her effort to get what she needs. She sleeps on the floor of our room because she is thirsty all night and needs her pull ups changed 4-5 times a night. (not as many as it was...but still) I was hoping she wouldn't catch Wesley's terrible cold. He's been battling the Dreaded Snots for almost a week but is finally coming out of it. (thank goodness!) Just a simple cold makes life so complicated for her. On a happier note, she is learning to read. :) She decided that she would like to read like the rest of everybody around here so i started her on the 100 easy lessons and we will see how far she goes. Lesson 6 so far so good and she's loving it. Such a happy little one.

Nothing can separate us from His great love...

Had a dream about the kids last night. (For those of you who don't normally read my blog, you will need to know, for the sake of the dream, that i have a son with epilepsy and a newly diagnosed 3 year old with "partial central diabetes insipidus")
Was on a long journey to get help for the sake of my children.... sleeping in shallow ditches and hiding from the enemy at night. When we got to where we were going, it was a large open field we waited in. Darren and I were the focus of the dream at this point. We were sitting on a long, wooden bench. Behind it was a curtain where thieves were stashing stolen items. We were surrounded by thieves and robbers and they were a part of where we were coming for help. A loud speaker announced that Darren was buying something. A Daniel Boon lid for something we didn't need or want... 40$ (everyone around laughed.) We were shocked. We didn't ask for, nor want that item, nor want to spend that on a worthless item. The loud speaker announced that we were paying 50$ so our change was going to be one dollar! We were being cheated...over something we didn't even ask for. I took the kids to the "cashier/receptionist" to clear things up. It was confusing... and they didn't want to listen or help. As i was dealing with the lady, Ellie, my 6 year old pointed out a little boy who was standing by the doorway and said to Sadie, "Look, that boy is about your size." As my back was turned, trying to deal with Darren's issue, Sadie went over to meet him. I turned around and a crowd of people were sweeping out the door... and her with them. I asked the lady to wait and ran to get Sadie. When i came out the door, everyone was gone, Sadie was so tiny and in a hospital gown, smiling and gliding towards a nurse in an open doorway. I sobbed, knowing that she was going to die and yelled out "no!"... The nurse was kind and brought me along with Sadie, but when i went through the door Sadie was "gone"...all there was left was to find out why...the dream went on with the process of brain scans, extremely detailed pituitaries with salt crystals floating out of holes along it's scaly length, conversations with doctors with Wesley in my arms and the other children standing...waiting....
Today a package came with the kids' math books for next year and in the package was also a CD that I had ordered because of a song i had heard on our local Christian radio station. I put the song on repeat as i did laundry and sobbed. God's timing is perfect. He knows the fear of a mother deep in worry, who feels "robbed" by illness. Just a timely reminder from God that we are not separated from Him, even in our sorrow, even in our worry, even in our work. He is in the middle of it with us. We belong to Him. Here are the lyrics...I also added it to my playlist.
Not angels,
nor demons,
no power on earth or heaven
Not distance,
nor danger,
no trouble now or ever
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you
Not hardship,
nor hunger,
no pain or depth of sorrow
Not weakness,
nor failure,
no broken dream or promise
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you...

Sadie update

Got this e-mail from Sadie's nurse this afternoon after wandering through the local greenhouses again in search of tomato cages... and that incredible smell of living things. Routine blood work has been done to ensure that her sodium/osmolality returns and remains within normal range during her introduction to the synthetic form of the anti-diuretic hormone. Mayo clinic results are in:

"Hi Jessica
I just tried calling but you are probably very busy. I hope you had a great time in Vancouver. How is Sadie? How are things going? So, the bloodwork from June 4th results were: sodium 141 (normal), and osmo of 289 (normal). We have received the blood work from California. The results are that the ADH (antidiuretic hormone levels) were detectable. Dr. M--- states that he can not fully explain why the ADH levels were undetectable previously. Dr. M---- states the history, investigations, and response to DDAVP seems consistent with "Partial central diabetes insipidus". In fact, the detectable ADH levels make more sense with the clinical picture of partial central diabetes insipidus. Dr. M--- suggests to continue with the twice daily DDAVP ... ________________________________"

We will have our follow-up appointment on the 19th. Thank you so much to those of you who are praying with us. It is a huge encouragement to *me* and I know to Sadie too.

Sadie update

For those of you who are asking about our little Sadie, here is the latest update. We had our appointment with the endocrinologist a few weeks ago. He is the one who has re-ordered blood work from the Mayo Clinic to check Sadie's levels of Vasopressin in her blood again. The last time they checked this hormone, they sent the blood work to Quebec. The countries' leading expert on Diabetes Insipidus runs his clinic there and they run that test quite frequently. Vasopressin is the hormone responsible for telling your kidneys to conserve water. When they tested Sadie, that hormone was "undetectable" in her blood. Her body was/is not conserving water on it's own. When she drinks, it goes straight out. That was why she was constantly thirsty and terribly dry with cracked feet, dry hands, chapped lips and often experiencing potty trouble when doctors advised restricting her fluids down to "only" 2 litres from her regular 6 or more litres of water/day. She was trying desperately to keep up to her body's demands for hydration, and we were thwarting her. I kept trying to convince the doctors that there was something else going on, but to no avail. The doctors were baffled as they were certain that it was *not* Diabetes Insipidus. She was concentrating and conserving *some* water which is what we saw during the "Water Deprivation Test"... but her numbers never did get as high as they should have, even after administration of the synthetic version of the hormone when the test was over. After months of torture and frustration at feeling like the doctors would not listen to us, we got a call that those first tests came back showing that her blood showed no hormone! (finally, scientific proof that something was physically going on!...relief!) Also the MRI was suspect. As of today, we are continuing to adjust the dose of DDAVP (Desmopressin, which is the synthetic hormone version of Vasopressin) It is in the form of a nasal spray but because she is so young, we use a tiny tube which she inserts up her nose. It has the bit of hormone in the tube. I blow and Sadie sniffs, and "voila" relief. So far it has been a LIFE SAVER. When the hormone *does* wear out in the evening though, she becomes very thirsty and needing a potty until her evening dose, so we are increasing her morning dose by an eensy weensy bit (with the guidance of her nurse) and hopefully that will make the "thirsty" time a little shorter. This has required frequent blood work. :( As is everything else in life, this is another balancing act. Finding the right dose and the best level of relief for Sadie while still allowing her body to function as normally on its own as possible. Her follow-up MRI will be in November. The doctor advised me to read up on certain specific "possibilities" while at the same time telling me that he is *sure* that's not what it is... Not sure why they do that. Why fill my mind with nightmares if you don't need to?... i have enough possible nightmare scenarios on my own. Anyways, that's where we're at right now...waiting on God.

Sadie's Secret

I was having a bath with Sadie and she told me she had a secret. She said it was a really long, sad secret. It did end up being a very long story, but it was interesting as it had all her guilt and fears intertwined and thinly veiled.:

"There was this boy in Sunday School and he was sick because he was always so thirsty. So he snuck into the bathroom at Sunday school and drank. Then he got more sick and he threw up. He had to go get blood work done on Tuesday. The blood got all over the doctors and still the little boy was thirsty and he had to go for more blood work. One day when he was downstairs watching Dora the Explorer... i mean Doostba... a show i don't like.... He snuck to the fridge down there and snuck drinks because there was pop in there. Then he got more sicker and he started to turn into a baby. He started to pick his nose and eat it. ( *this is I'm sure linked to her fear about her decline into peeing her pants and bed*) And then the Dr's put Vasopressin in his nose and he wasn't thirsty anymore....But actually it was a girl and her name was Sadie... but a different Sadie than me."

When i was putting her down for a nap she told me, "I love you mom because i was sick and you helped me to get better..." *tears*. I'm SO wiped and bleary-eyed from my horrendous day with D. yesterday and then little Sadie's days just keep getting better and better. I asked her about her story and if she snuck water while she was downstairs watching Dora once and she said "You mean Dora Saves the Babies?"...pause... (look of relief washing over her 3 yr old face with her confession being recognized) "Yes i did....but the boy in my story is a different boy than Sadie and that Sadie is a different Sadie than me." She is such a smart little thing. I'm feeling such relief with her response to the hormone. *good day*--j

Today is a day of...

Today is a day of...

Waking up to the sound of a seizure.

Carrying an 11 year old muscle-bound farm boy to the living room couch only to hear him fall off the couch 2 hours later tight in the grips of another seizure that turns him blue.

A 9 year old girl witnessing her hero in confusing pain, wide eyed and not responding.

Curt only needing to hear "I need you." before answering "I'll be right there."

Staying home to make chili, banana bread, coffee and biscuits to stave off the heartache.

A synthetic hormone finding it's home so that a 3 year old girl can have the best day of her life since Feb.

Grampsie visiting by divine providence.

Baseball practices with Gramps and Curt.

Dairy Queen ice cream with Grampsie.

Curt selling horses.

Kids scrubbing out the old swimming pool and filling it with warm water and bubbles.

Sunshine.

Clean floors.

My son waking up...finally.

Staring into the eyes of my Heavenly Father who knew this day was going to come and sent 3 encouraging cards through faithful servants in the mail yesterday for me to read over and over and think about how much He cares too.

The day after deprivation

Well, we made it through so many days of waiting only to be given another set of days to wait. Dr's visits begetting Dr's visits. Finally got in with the Nephrologist for Sadie, waited another 5 days for her "water deprivation test". By the time the test rolled around, she was drinking almost 7 litres of water/24 hours. We were up every hour of the night changing her and giving drinks as it continued on into the night. Morning diapers weighed in at 7 1/2 lbs. Sadie and I spent yesterday laying in the clinical investigations wing of the hospital. Curt, my hero of a husband came and brought Wesley. He looked after him all day at the hospital so that I could stay with Sadie and when Wes needed nursing, Curt brought him to me. I love that man. Curt's mom had all our other kids spend the day at her house making cinnamon buns and playing with cousins....I love her for that too. I brought Darren's DS with a "Dora Explorer" game borrowed from a friend, books and dollar store prizes to be chosen after each unpleasant test. That was my aunt and cousin's suggestion and it was a great tool to have on a day that was guaranteed to be a rough one. I carried her through the halls as we waited in between "checks", reminding her that i love her as i said "no" to repeated cries for water. We made scheduled and repeated trips to the washroom on the hour for samples of blood, urine, BP and weight. She lost 4 % of her body weight during the test (easy for a 28 lb 3 yr old to do) and her sodium was rising, something they were watching for. Suddenly it rose higher than their limit and the test was abruptly ended, last samples were taken and the anti-diuretic hormone was given to see what her reaction was to it....It was Diabetes Insipidus...Then the last results from the lab came back and the sodium was back to it's original number... high, but not at a level warranting stopping the test! They decided that the sudden jump in sodium in her blood work was probably due to the saline flush from her IV. So frustrating to have them screw up after such a long torturous day of it. Dr. decided that he needed to talk to the leading expert in Diabetes Insipidus, Dr. Bichet, who lives in Quebec regarding the results and in the meantime we were to cut her drinking down to 2litres/24 hours starting that day. WELL! We went home answer-less...She was parched and didn't want to eat on the way home. Only drink despite not having eaten anything all day. (The test had lasted from 3 am-2 pm.) I allowed about 4 cups total by the time bed rolled around and then explained to her that we were not going to give her drinks during the night. She said "I'm not thirsty anyways." !!! I haven't heard her say that ever. I tucked her into bed and she did not wake up for drinks even once. At 3 i woke her up to see if she could pee as i worried that she had drunk too much and if she couldn't pee it out (because of the hormone) it could be problems but she didn't have to go. At 7 am I pulled on some pants, coat, shoes and pulled my hair into a ponytail. I didn't wash my face, brush my hair or my teeth (This whole ordeal is encouraging some un-hygienic practices) got Sadie up, urine sample collected and went into the lab for more blood work. I was amazed with her reaction to the anti-diuretic hormone! My uneducated opinion is that she *is* concentrating her urine but just not *enough*. I think because she is losing too much fluid, she is getting thirsty. Around 11, her asking for water began again. She had only drunk 1 1/3rd cups of water, but 600mls plus the urine sample had escaped. Her drinking seems to be fuelled by her peeing. I guess we will see as time goes on. It is Easter so we won't get in to see the Nephrologist till next week when he has booked us in, but hopefully more will surface between now and then. In the meantime, it feels like God is just right here... silently watching and waiting with me. I recognize this "feeling". When Darren was diagnosed with epilepsy i remember feeling like God was present but He was silent. His silence annoyed me and made me angry. Somehow, this time around, His silent presence is peaceful and reassuring. It's an acute awareness that He sees my heart, He knows my thoughts...."...even before a word is on my lips, (He) knows it completely..." (psalm 139... again) The silence, to me, is God listening.

Waiting and trying to feel useful...

Well, the results are in and the appointment is set. It didn't turn out how i thought it would though. As the day wore on and i continued measuring what *exactly* is the water intake and output, my anxiety began to grow. It's one thing to *know* that the amount going in and out is huge. I did measure smaller amounts of time to get a picture of what was going on, but actual numbers confirmed in my mind that I'm not crazy. Something is going on. She drank 6litres and 650 mls in a 24 hour period. Almost the same is going out. Despite the numbers, which the kidney specialist recognizes as huge, her case is not considered an "emergency" as her blood and urine tests all came back clear. I disagree. She is going through 1/2 her body weight in water/day. ...and she's my baby. Our appointment is set for Friday. One week away. After getting off the phone, my hope for an appointment that day was gone and was replaced with total nausea. My sister Paige advised me to ask them to put me on a cancellation list so that we could get in earlier if someone else cancels and that gave me a shred of hope back. (Thank you Paige!) I decided to take the kids out to the greenhouses to smell something green and living. Out of the 3 we tried, only one was open but it was worth the driving around. The deep horrible snow at this time of a year can make a person desperate for that smell of *life* contained in the local greenhouses and the events of the past month have only served to intensify that need in me. They all bought cacti. As we were driving home, mom was talking to the kids about how the cacti can just survive all kinds of things. A wave of a thought swept over me of "You can survive this week too Jess." I know mom imagined this week to run differently too. When she flew in, we had been told that Sadie was going to be admitted. Maybe mom is feeling useless too. I hope not. There is something (unlike anything else in the world) that I can only find in the company of my mom. Even if all we can *do* right now is continue measuring to feel useful, and stare at each other and wait. I'm finding comfort under my mom's wing and her encouragement that regardless of the outcome, God remains our true comfort and encouragement and strength. Waiting...my eyes are on Him.

"Cupcake"

"Cupcake" was sleeping during this goofball festival today and missed all the fun!

When we were at the Children's Hospital the one nurse kept stopping Sadie to and from the washrooms telling her how everyone thought she was so cute like a muffin or a little cupcake. Sadie giggled and when we went in the washrooms Sadie smiled at me with her head tipped to one side and said "She calls me Cupcake!" When we left the hospital she said loudly "They LOVE me!!" Last night as i was praying with her before bed she said her prayers this way. "Dear Jesus, Please help Cupcake to get better. Amen." Then looked at me with her silly 3 yr old face, waiting for my laugh. I'm afraid her chosen nickname may stick and she may not lose it when she wants to but for now, Sadie is "Cupcake". She also has chosen to answer to the name of "Muffin" every now and then. Nephrology (kidney specialist) called me today and so we are measuring the "ins" and "outs" of 24 hours of Sadie's little life and then we will be booking an appointment. She's at about 3 liters "in" so far. Still perky and happy. Nights will be measured in lbs I suppose. The kids are enjoying a sudden visit from their Grannie who lives 16 hours away and other than that, life is going on as usual. Hoping this is a strange virus that will resolve but hopefully there *will* be answers and an end to this unusual turn of events.

Sadie Update

The last post began one of our worst nights with Sadie. She needed to be changed almost every hour and cried all night for more water. Curt and I tag teamed it and I got maybe a total of 2 hours sleep. Then either my alarm never went off... or i slept through it. Either way, i was woken up by Curt and Sadie at 7:30 Sunday morning. I was supposed to be singing on worship team at the church at 7:45! Good one! I threw some clothes on, combed my hair frustrated that i had braided it the night before so it was a mess. Neglected brushing my teeth (not nice), slapped a fresh diaper on Wes and the two of us drove to church. Our music pastor asked how I was and I think it was then that the magnitude of the night before finally hit me. :( *tears* They prayed for us as a family and I went through the day feeling like i really needed a shower and a good sleep. I picked Sadie up from Sunday School and she announce happily that "The Sunday school teacher gave me as much water as I wanted!!" I didn't think of it again till later. We went to Curt's sisters' place for a birthday party where she had to be bribed to eat and begged for water. Finally she ate a bit of meat so i gave her a plastic cup of water. She downed it in one gulp and then grabbed her tummy and howled. "My tummy hurts!...I gotta go pee!" I was so tired so took the kids home. Sadie was cold and her lips were just blue so i decided to take her for a bath. When i undressed her, her tummy was like a malnourished African baby that you would see in the World Vision ads. I asked her to suck in her tummy and she said she couldn't. I poked it and it was rock solid from her legs to the top of her chest! I panicked. Long story short, we were going to take her in to emerg, changed our minds after she ate something substantial and realized that the bloat was probably from the Sunday school giving her "...as much water as she wanted." She had also left church soaked all up the front of her jacket from guzzling at the fountains back and forth as well. Today, we made it to the same pediatrician we went to last time. I brought in 2 full bags of wet diapers representing the previous 2 nights of diaper peeing minus all the times she actually made it to the washroom. He sent her for a head x-ray and then told us to go straight to the Stollery Children's Hospital. Curt dropped me off there with Wesley and Sadie and i spent the next 4 hours alone with them going back and forth to the washrooms with Sadie. Holding Wes as I lifted her with the other hand on and off, then hands washed, then back to our seats. The first time we went, i didn't save our seats and 2, 300 lb native men with their young nephew took one of our seats so I sat there with a 3 year old and a 4 month old both snuggling on my lap for the rest of the time. The "seat takers" talked loudly about women and "security" costumes they were planning on buying. (that's all I'm going to say here but it was a little intimidating and inappropriate) Anyways, we got in after that so i called Curt and he came back in to be with us for the appointment. Sadie screamed like crazy again for the blood taking but enjoyed thoroughly the peeing in the cup part. Not sure why but that brings a smile to her face every time. They told us at first that we were going to be admitted to do the test for "diabetes insipidus" and then another lady came in and told us that instead, we could go home and get a good nights' sleep and they would get nephrology (kidney specialists) to call us either tomorrow and no later than Thursday for further testing. Her kidneys are not concentrating the urine... not conserving anything. Water in-Water out. Mom is flying in to help out. I guess tomorrow I will get prepared for a possible overnight stay as i was imagining sleeping in my contacts. That and Sadie's diaper had not stayed in place. When they took her blood, she had to go pee and wet everything and we didn't have a change of clothes. I guess that is another thing I'll need to carry with me in case. SO thankful for family. Curt's sister Jody orchestrated 3 shifts of babysitters for us tonight just in case we were not coming home! WOW! Praying for an answer.

What day are we on now???

Thrilled with the "eating of the muffin" yesterday, i made another batch today. Accidentally, i quadrupled the recipe. (ooops!) I sprinkled a few of them with chocolate chips. Curt had bought "caramel" chips and there were a few of those on top too. After eating a banana muffin, Sadie informed me that she did not like the "white" chocolate chips. I asked why not and she said "They taste like HAM!" Somebody forgot what ham tastes like I think. The drinking thing was less today but not gone and she is still having accidents at night. Curt has changed her once already and it's only 11:23. Looking forward to tomorrow and praying for a complete resolution of the problem. I'd better get to bed as I have to be at the church tomorrow morning at 7:45 for worship team. I'm going to need a STRONG coffee! This has been a long week...2 weeks... what day are we on!? Tomorrow marks the 2 week-aversary of Sadie's Sunday barf during the presenting of the pot-bellied pig. Nice when you can count your days off like that. :)

Joy in the Morning!!

I gave Sadie "over the counter" antacid (Diovol) the past 2 days. Probably more than she should have had but she's also had more vomiting/"D" than she should have had. The Pediatrician said that the Diovol should help to reduce the acidity of her volatile tummy so that it could heal up. I'm so thankful for a simple solution if it will help!! Last night, Sadie stayed up and ate a whole muffin! I know it's *small* sounding but after so long of not eating, it was shocking to hear her say "I'm HUNGRY." I didn't have to bribe her to eat by promising water. She wolfed it down and then settled into bed with me and slept the whole night. She didn't get up and ask for water till the morning when i woke up around 6 to the sound of her crying at the drink dispenser of the fridge. We had locked it the night before. She would not eat breakfast but at lunch ate a whole hot dog. Wow! I'm so relieved. So is Curt. He has been beside himself over Sadie. Waiting to see if the drinking problems will improve with an increase in appetite and eating. So thankful to friends for praying. So thankful to God for comfort, and another reminder that these little ones are not mine alone. They are on loan from His mighty hand. God, help me use my moments to point them to you so that they know where to turn in times of worry and doubt. On a side note: The pediatrician said that many of the anti-nausea act "on the brain" which tells the tummy to settle down but doesn't relieve what is happening in the tummy (eg. Gravol) which is the reason the problems keep re-appearing. He said that others can cause problems with diarrhea. (Pepto Bismol!) We had only given her the one dose of prescription meds. we were given in emerg. to take home to settle her tummy (so that she could keep water down) and that did nothing for her. We tried Gravol and she was very zoned out and, like the other medication, the vomiting returned full force as soon as it wore off. Thank God for an end to the 11 day fast and vomit festival! So thankful! Another thing to be thankful for is Darren. After his seizure the other morning, he threw up and got a wicked headache. I was scared that we were going to go through the same thing with him. I thought he had the flu and that i would have to be on the phone with his Neurologist about how to keep down the anti-seizure meds. He's never had the flu since he was diagnosed over 3 years ago. I e-mailed family and asked them to pray for that situation and I went upstairs with a dose of antacid and his morning medication for his epilepsy. He also needed Tylenol as sometimes the seizures create horrible "waving" headaches and he had one bad. The medicine stayed down and he didn't throw up again. Maybe the seizure created the nausea (which has happened before but not to that extent). Regardless, of physically why it happened that way, it is another answer to prayer in the nick of time. "WOOT WOOT!" ( ...as the teen generation likes to say.) So Happy!

Forgot Something!

It's 11:30 at night and I got home an hour ago from a night out with a friend. We were having nachos and chocolate desserts at Boston Pizza and I got a call from Curt telling me that Wes needed me. My date night was abruptly cut short (sorry Andrea!) and I headed home to find a happy-to-see-me boy who didn't seem too starved. He did giggle and kick when he saw me though and that was a thrill for sure! After getting him settled back into his crib, Curt told me how Sadie had asked for muffins tonight. I started throwing things into the mixer so she could have muffins in the morning. Then she woke up and came down the stairs to find me making her muffins. She decided to stay up and wait for them to finish baking. I suppose she felt like we were good old pals staying up late together and it brought back the conspiratorial conversation we had at the Dr's about the pee sample that we were going to leave for the lab techs. We were walking to my room to get something holding hands and she looked up at me and said "At the Dr's I peed in a cup..."
me: "Yes you sure did Sadie and we left it in their cupboard."
sadie: "We forgot to spill it on their heads!"
me: "Yes Sadie, i guess we did forget to do that!" Haa haa! (wasn't really part of the plan!)--j