The Gift of Hearing

It's been a while!  I've missed you!  It still amazes me that I type out my thoughts and without speaking an audible word, you hear me way out on the other side of the world... next door... a few towns away... my thoughts connecting with yours.  The complexities of "connection" never cease to amaze me.

Sivana is turning five this Fall and she is such an eager learner.  She is quiet and sweet but her determination makes her impatient with being taught... so she tackles learning hands-on whether we're ready or not. :)

There is an FM device that schools typically provide for children with hearing aids.  A receiver hangs around the neck of the person wearing hearing aids which connects to the microphone on the teacher which allows direct connection to the hearing aids.  A brilliant way to ensure that despite all the noise around, a clear voice is heard directly.  Well, there is a wireless bluetooth technology approach to this same concept.  Unfortunately, we found out that despite paying school taxes, because we homeschool our children, we are not eligible to be provided with this technology.  So we have been saving up for several months to buy Sivana her own Compilot.  Once purchased, we visited the audiologist who set it up with Sivana's hearing aids.

Then, the moment... trying it out for the first time.

The device hung around Sivana's neck as we turned the button on and a little blue light appeared.  Then I put the microphone on my shirt and turned the button and watched the little blue light flash until it was in sync.  Then I spoke.

"Sivana, can you hear mommy?"

"Yes!"

I wandered into another room where she couldn't see me and I spoke again.

"Sivana, can you still hear mommy?"

Her beautiful giggle warmed my heart as she joyfully said "Yes!  I can!"

We held hands walking back to the van and giggled together about how much fun this was.  She climbed into the far back seat, put her seatbelt on and I looked into my rear view mirror at my beautiful little girl and I got to speak to her.

"Sivana... can you still hear me?"

Her eyes looked up at me in the mirror and she smiled with reassurance "yes Mommy!"

Our van is so noisy that I have given up trying to converse with Sivana while driving.  Even with her hearing aids, my voice simply cannot carry to her adequately.  But that day... oh my dears... that day we talked about everything we saw on our drive.  We sang songs and I choked back tears of joy at the barrier between us that was no longer there.

Connection.

It was more than connecting sound to ears, it was more than connecting thought to thought, understanding and being understood... it was heart to heart, joy to joy, mother to daughter.  I praised God for His provisions... for the ability to purchase such a device.  It seems so simple but what it accomplished is immeasurable.

Sivana is adjusting very well to it.  The last time I sat with her to homeschool, I wore the mic.  On her receiver, she has a + and - sign to control the volume.  I burst out laughing as we were wrapping up (but not yet done) our lesson and I watched her click the - button to turn my volume off!  Too funny!!  She giggled when she saw that I'd caught on to what she was doing... Ok, Ok, I can take a hint.

Another really cool aspect to this technology is that it allows Sivana to sync with the teaching iPad so that the sound goes directly to her hearing aids.  It is a great tool.

Aside from the new technology, Sivana is visited monthly by a Speech Therapist and a Teacher for the Deaf and Hard of Hearing.  We are so grateful for the skill sets these lovely women contribute to Sivana's learning and adapting.  The other day, as I was walking the teacher back towards her vehicle, she turned to me and said "I have been teaching for over twenty years.  I have never seen a child as bright as Sivana.  You've gotta set the bar high for her... she deserves it."

Gulp!

She has done three different assessment/aptitude tests and Sivana is above average in the category of hearing children, let alone those dealing with hearing impairment!  See what I mean by my statement that she is an eager learner?  Oy!  The LORD has blessed her and I cannot praise Him enough for the strength He gives her and the gentleness of her heart.  Even during one of the aptitude tests, the person asked "What is your favourite color?"  So Sivana answered but before the woman could continue, Sivana says "what is YOUR favourite color?"  The woman looked surprised but answered her then continued.  "What is your Father's name?"  "Duane... what is YOUR Father's name?"  The woman smiled and shared her father's name.  By the end, this woman looked at me and said "I've been doing this test with many children some as old as seventeen.  Never have I experienced the questions being asked of me!  Your daughter is thriving and is so engaged."

My dear ones... I delight in these, my special children.  I cannot thank God enough for trusting them in my care, allowing me to be witness to their lives.  I feel so privileged to be their mama and I just pray that He equip me for the task, that He keeps me humble and open to reason, just as eager to learn.  It is a level of connection that exceeds capacity for words... but quiet understanding keeps good company with it.

Wherever you are, thank you for connecting with me just now.  I pray that you are blessed this day and always... that you are eager to learn and to be engaged with others... to care more about the details of who they are than your own details being known.  I pray that you be rich with connection.  God bless you!

Sonic Bloom

There are pink blossoms dancing on the branches of our ornamental crab apple tree by my office window.  Some have eagerly blossomed the last few days we've finally had sunshine and warm days while others hold firmly within their buds as though not fully trusting it is Spring yet.  After a long, drawn out winter, I can't really blame them!  But the sight makes me wonder what God sees when He looks upon us, His creation...

Does He see those in bloom, fearless of a potential frost, trusting that giving it their all will bear fruit as God sees fit?  Does He see those who remember all too well the sting of previous attempts to bloom too soon and their resulting reluctance and hesitation to trust fully?  And even in such varying states, does it look as beautiful to Him as this tree looks right now?  Afterall, God knows in the end, we're all in the process of blooming.  And that IS beautiful!

I felt like the hesitant bloom the other day when we made our way to the audiologists office to re-test Sivana's hearing.  I had emailed them saying we believed there was a significant difference and wanted to check again... I was even bold in sharing we believed this could be answered prayer.

The hesitant bloom... do I share my faith fearless of being laughed at by a stranger?

Sivana did brilliantly, playing the usual games of listening for the "birdie" sound before placing a toy in its place.  With fearlessness, she would hold out the little sea shell with one of the alphabet letters and let the audiologist know which letter it was until she acknowledged what Sivana said and then she would hold it like a baby until the sound came through on the hearing test devices and she could go ahead and place the shell in the bucket.

Silent prayers weaved their way through my heart as testing progressed wishing I could peek at the scribbling notes the audiologist was busily writing down.  Finally, an hour later, the moment of truth... was my mother's instinct right?  Or will I feel like a complete idiot in front of this person?

"Well Mrs Vaags, the results here match exactly previous tests so it seems nothing has changed."

Complete idiot, it is!

"But how is that possible when she is obviously hearing things she never heard before?"

"She is more than likely simply adapting to her environment and HOW she hears within her parameters.  It could be that she is simply getting used to what she hears."

I felt somewhat deflated leaving there.  And to be honest, I was not looking forward to blogging about these results.  A part of me really does feel like an idiot... a premature bloom cut off by frost.  Part of me wonders if I should have waited for tests BEFORE blurting out to everyone that we feel God has been working a miracle with Sivana's hearing.  Yet it feels like there was purpose even in this moment.

I don't understand it.  I feel a little embarrassed.

But regardless of test results, the miracle to me is that Sivana IS adapting and doing far better with what she has to work with than she has before.  Even though her inner ears did not change, how she works with them HAS.  And that IS answered prayer in a different way... but answered prayer nonetheless.

So this hesitant bloom has decided not to let the frost of disappointment reach me and destroy what I seek to have bear fruit for the Lord.  I will bear the sting and trust that God is refining and testing my faith, which is also answered prayer.  I will seek His hand in this and trust that all is as it should be.  And I WILL continue to be bold in where I feel Him working in our lives.

If I am wrong, then I am wrong.  But if I am right... need anything more be said?

So to all of you out there, thank you for the generosity of your prayers where Sivana is concerned.  She is doing much better despite her hearing impairment.  We meet with two different therapeutic programs for the hearing impaired this next month and look forward to better understanding what more we can do for Sivana to conquer this world fearlessly in who she is!  But God has already blessed her with a perseverant spirit.... one that believes whole heartedly that there isn't anything she cannot do.  And through Christ Jesus, she is absolutely right!

To all of you precious blooms out there, the hesitant and the brave, take heart in knowing that no fruit has ever been borne without first the faithful and trusting process of opening fully into bloom.  And that no fruit is sweeter to God than that of one borne to Him in faith.  I love you all out there!  God bless you!

The Sound of a Miracle

The creak in the floor (the many of them!)... the distant sound of the faucet not fully turned off after a child's rushed attempt at washing his hands before getting back to play time... the gentle whisper of a goodnight prayer tucking babies into bed...

Sound carries so much more than a synapses of information to the brain.

How much of what we hear do we take for granted every moment.  Even as I type this, I make a point of listening to the many levels of noise right down to the plunking of my keyboard... the temporary pauses as I think of the right word(s)... and the tiny moments of "checking in" with the sounds to make sure all of them are "normal" (as is "normal" in this house!).  What if you were to pause right now and think of all the sounds around you?  Has your furnace just kicked in?  Is the fan still running in the bathroom?  Has someone just turned the page of a book in another room?

With Sivana's hearing loss, I try to ask myself HOW her world is different with an avenue of information coming at her being somewhat obstructed.  How much do I depend on my own hearing?  And what would I subconsciously depend on without it?  What affirmations depend on it?  What can replace them?  Does she realize that we hear things that she doesn't?  Or does she assume everyone hears the way she does?

Our darling Sivana is only two and a half but God equipped her with a persistent and unafraid spirit.  There is nothing she cannot do, as she sees it!  If her six year old sister and four year old brother are doing it, this means she can do it, too!  No questions about it.  And if mom won't take the time to show her, she'll just do it herself, mistakes, bumps, bruises and all.

I catch myself struggling with HOW to honour this.  She will need this attitude in her life.  This will be a strength down the road.  But how do I embrace it now when it means prolonging tasks to five times their duration?  If lunch is already going to be late, now that she's grabbed her stool and has plunked it on my foot to make sure she's directly in front of what I'm trying to make, I need to call upon God to fill me with His patience and His eyes to see the gift in this moment and not the inconvenience of delaying lunch even further.  It is a process for all of us.

We had a CT scan back in December to get a better "picture" of Sivana's inner ear structure.  Is her hearing loss structurally based or nerve based?  The problem with inner ear hearing loss is that it is considered permanent.

Permanent.

God likes these kinds of words.  As a parent, I could do without them, but for God's glory, I say "bring it on!"  In moments like these, I say to God "Father, I don't know what your plan is here and I'm having a hard time understanding it... but my whole life, you have known better and your plans have been greater than my wildest dreams, so while I don't understand....I'll (gulp) trust you."

How can Sivana's hearing loss bring glory to God?  I don't know, but He does.  And that's all that matters.  For now, we'll equip her with faith, a foundation of love and trust and do our best to represent authority in a fruitful, life-giving way.  Her trust and submission to our authority should pave the way for the trust she can place in God's.  If we can prepare her, He will find the right time to work through her.  And I know He will.

But these last few weeks, I have observed something I've been afraid to even whisper.

When I go to get Sivana out of bed in the mornings when she is yelling for one of us, I go as quickly as I can before she wakes up Ethan and Anika who are still fast asleep in the room.  I have to put my face right in front of hers so she can SEE me sign "shhhhhhh".  I have to touch her shoulder for her to realize I am there.  But the other morning, the usual creak of the door opening made her sit up in her bed.  Could she have heard it?

When I went to pick her up, I had both hands around her so i couldn't sign but I made the "shhhhh" sound without thinking... to which she whispered "be quiet."  Is that simply the fruits of routine?

This past week she has been speaking more and we are understanding her!  She is trying sounds and words she hasn't tried before.  I have been baffled.  They had turned up the volume in her hearing aids back in the winter and she refuses to wear them now saying that "pu-po fends hurt eahs."  (purple friends hurt ears).

Outdoors is the most challenging.  Because there isn't much for sound to bounce off, Sivana's rendered more deaf when we go outside than when we're in a closed in space.  She seldom hears when we yell for her.  Often times, we're short of firing off flare guns to get her attention!

Just today, Duane and I took the kids outside to see the new lambs being born and the chicks that just arrived and the two week old puppies... a Sabbath family time to enjoy our provisions and God's promise of new life in Spring.  Duane was holding Sivana in his arms when she asked him "Whea's airpane?"  Duane looked puzzled, strained his ears and realized that far off in the distance, there was a jet plane in the sky.

Sivana heard it when Duane did not!

What is happening with our Sivana's inner ears?  Can this be happening?  Are we imagining this?  I dare whisper these thoughts because there have been too many observations in obvious changes to her hearing NOT to say something!

I will request another hearing test given these new observations and I will be very interested to know the results.  Sivana is responding to sound like we've never seen her do before.  She has even startled at sounds she never responded to before!

Is God working a miracle in our Sivana?  What could we have possibly done to be blessed with such a gift?  Even as I type this, my eyes are filling up at the possibility!  I know that all things are possible through Christ Jesus, our beloved Saviour... but sometimes I find myself surrendering to the idea that nothing will ever change.  And why should they if I lack the faith?

So I have dared to share these observations prior to any real tests.  But what I am telling you is that something has changed when it should have been considered impossible.  Our little girl hears us when we whisper to her, our goodnight prayers, our messages of "love, love, love Sivana".

Sound is so much more than a synapses of information to the brain... and if miracles had sound to them, I would imagine they would sound something like the sudden whisper of God's word within your ear as though He commanded it to hear Him.  Just like that.

With that, my darling beloveds, I reach out to you with a gladness in my heart that words fail to speak for me.  Perhaps simply close your eyes and listen, not just to the sounds around you, but to God's voice within you and join with me in the holiness of His will... surrender your understanding and seek past its limitations to the impossibility that is God.  Because those are His most glorious moments of revealing Himself to us.

My darlings, He is with us... He is with you.  This is my prayer, my heart's petition, that you all may KNOW His presence with you and that you ask Him to give you the eyes to SEE the many ways He reveals Himself to you.  Perhaps even in the very simple things we take for granted.

Much love to you all out there... now and always.  I will keep you posted on what becomes of this whisper.  Pray that we are faithful to His will and diligent in teaching our children to "love the Lord with all our hearts, all our soul, all our strength and all our mind." (Deut 6:5, Luke 10:27, Mark 12:30, Matt 22:37)  Mostly, by being examples of this ourselves.
God bless you all!

Sivana dancing to Melina's rap music

Not sure if this will work or not, but I just had to share what Melina captured of Sivana dancing to christian rap.  At one point, she tries to get on the ground to breakdance the way they are in the video... too funny!

Sivana's Purple Friends

Beloved family & friends (those known and unknown),

Many of you are parents.  Therefore you know the pain of witnessing helplessly your own child's suffering.  It is deep, it is solemn, it is humbling.  But how does one describe being witness to their child rising above that suffering to rejoice in life?  Well, you know me... I am never short on words, so here's my attempt at describing watching our darling Sivana discover the difference in what her God-given ears can hear with the help of some "purple friends".

Sivana's purple hearing aids have opened her to a whole new world!  The molds fill the outer ear cavity and the devices themselves loop over the ears.  Both the molds and hearing aids are Sivana's favourite colour... Purple.

When the audiologist put them in her ear, Sivana was tolerant (as the audiologist has stuck many different devices in her ears for all the tests performed so this was nothing out of the ordinary).  Sivana was sitting on my lap when the audiologist turned the hearing aids on.  She then spoke to me and Sivana immediately whipped her head up to look at the lady in surprise.  I laughed and she immediately whipped her head around to look at me with just as much surprise.  I asked her "Sivana, can you hear mommy?" to which she immediately replied with awe, "yeah!"  I signed the following while speaking: "Sivana... Purple friends help your ears to hear.  Do you like purple friends?"  Again she replied "YEAH!!"

These last few days, she has been singing, playing her iPod game called Starfall which has all the alphabet and their phonemic sound and she has been choosing the letters she couldn't hear before and playing them over and over again.

I caught her placing her hand over her mouth to "feel" the "t" sound and she delighted in finally hearing it... Finally understanding the sounds I was making when I'd put her hand to my mouth when she wasn't understanding me.

She is adjusting to hearing herself speak but doing so well!  Even the sound of her footsteps seems to delight her and she stomps around the house.  When morning comes and I hold up her hearing aids, she laughs and runs to me saying "yeah... Pupo fend... Elp ea-uh"

Yes, my darling girl, purple friends help your ears...

I love that she hears her name.  I love that when I whispered "Mommy loves you" by her ear, that she actually heard me!  Such a simple thing but as a parent, you know how much you want your children to KNOW you love them, not just by action but by the comfort of your voice, too.

I thank God almighty for His guidance, for a gut instinct and a pediatrician who listened.  For a brilliant little girl who fights for life with her one kidney and her special ears!

In addition to audiology, we are being referred to SMD (society for Manitobans with disabilities), Ears-Nose-Throat Specialist, and Genetics.  Perhaps we can get a better idea of WHY and exactly WHAT is going on.

For her heart murmur, we see a cardiologist in January.

For her one kidney, we were at Nephrology in mid-December and her blood pressure
readings these last few months are in the 50th percentile so they are happy.  She has grown well and her blood and urine samples came back looking good.  Her one kidney is offering 99.9% overall kidney function!  We praise our heavenly Father for this blessing.  We also celebrate the fact that we don't have to return to nephrology for a whole year! At which point they'll do another ultrasound of the kidney.

Thank you for uniting with us in prayer.  We cherish our babies so much and while my heart aches some days at the challenges my babies seem to face, I rejoice at their strength and love for life.

I love you all so much and thank you for being there.

Inner Ear and Inner Strength

As some of you know, I have been suspicious of Sivana's inner ears for quite some time, particularly since she was learning how to walk and struggling so much with balance.  I've also noticed her speech developing very differently than all the other kids.  We've been so thankful for sign language as this has been our best means of understanding her.  I've also noticed certain sounds that she does not seem to respond to such as the letter T, S and F... letters typically registered in the higher frequencies.  Even though I try to show her these sounds, she looks at my mouth with confusion and reaches her hand to my lips to "feel" the sound.  That's when I knew something was very different.

So we finally went to see the pediatrician and I asked for a referral to audiology.  Thankfully she took my concerns seriously and Sivana was seen today.

We spent an hour in tests and Sivana did brilliantly.  Different devices hooked to her ears, various speakers used around the room, probes behind and in her ears... she took it all and despite having just turned two, was able to use the methods of testing for age groups 3 and up (said the proud mama!).  Sure enough, by the end of all the tests, all methods showed consistent results that Sivana has mild/moderate hearing loss and will require hearing aids in both of her ears.  Because the hearing loss is in the inner ear, it is permanent. Thankfully, they had a device that showed WHAT Sivana hears so I was able to better understand the severity of her deafness.  


When the technician said mild/moderate, I figured it wasn't too bad, but when she showed me a regular conversation between a man and woman under normal hearing conditions and then under Sivana's conditions, I couldn't hold back the tears...  I could barely understand anything that was said and it was as if I had my hands over my ears.  All those times we thought she was being disobedient... she just couldn't hear us!

The other aspect to this is the fact that the inner ear develops in utero at the same time as kidneys and reproductive organs.  Whatever happened during that gestational stage, it clearly affected her kidney(s) (hence the multidysplastic kidney) and now also her inner ears... I am praying fervently that the Lord safeguards her womb.  

Sivana loves babies more than any other child I have seen!  She carries her own little baby with her just about everywhere she goes.  When I'm nursing, she sits on the couch and "nurses" her baby, too.  Anytime Avalyn is awake, Sivana giggles and stays near her and asks to hold her.  Even at the clinic today, a baby was in her car seat crying and Sivana gasped when she saw the baby and clasped her hands together in excitement and then looked concerned as she realized the baby was crying.

I don't know what the good Lord has in store for our Sivana, but please unite with me in prayer that He bless her womb, whatever that may look like.  Nephrology clinic warned that this was a possibility and that we would begin tests when she is a bit older.  Only time will tell.

The good news, my dear family and friends, is that the technician was greatly impressed with Sivana's ability to communicate given the severity of her hearing loss.  Thank you Signing Time!!!  We are back in four weeks for more tests and fittings for hearing aids.  We pray that the transition to hearing absolutely everything (particularly in this house) is not overwhelming for her.

Her heart murmur is also something the doctor wants to further investigate so we are also being referred to a heart specialist.  I asked the Lord for exceptional children and He gave me exactly that!

Thank you for your support and for uplifting our precious girl in your thoughts and prayers.  I love you all so much.

Incredible Prayer Warriors!

That is what you all are out there!  I am literally stunned by the day we had today and am shaking my head at the drastic change of events.

The night had been rough with Sivana having soiled herself all over and parts of her crib at 2:00 a.m.  And she was inconsolable for quite some time... shaking and shivering and just looking like all of this was really taking its toll on her.  Hence the desperation in research, hence the desperation of my blog entry and plea for your prayers.

This morning, she was up as usual wanting her bottle.  This has been guzzled down only to be thrown back up again within an hour or two.  But this morning, she drank it AND wanted to eat some food for breakfast!  And more than only two bites!  She had another small bout of diarrhea shortly thereafter but nothing compared to what we'd been experiencing all week.

She had enough energy to stay awake until 8:30 a.m. and then went down for her nap (these last few days, she has had to nap after being up for an hour).  An hour later, she was up and asking for another bottle!  I was starting to thing we'd have one big mess to deal with before too long.  But that bottle stayed down, too!  She wanted to eat a snack and was even being somewhat playful again... a part of her character we have not seen all week.  Even her smile was finally reaching her eyes!  Praise be to God!

At lunch, she ate more food... not much but far more than her usual bite or nothing at all.  Right after lunch it was time to head out to the paediatrician's office.  Once there, they weighed her and took note of her elevated heart rate.  Given that she has only the one kidney now, they want to see her peeing at the very least every six hours.  Well, we were lucky to get one or two pees from her per day for the last few days and by 1:30 this afternoon, she had last peed at 6:00 in the morning when she woke up.  The paediatrician said she thought it would be best for Sivana to go to Children's Emergency for IV rehydration and to test blood levels to ensure the past week did not take a toll on her kidney.

Well, not as easy a task as this meant driving to Isabel's school to pick her up, then drive back out to the country, pack some provisions and drive back out to Children's Hospital.  Finally just before 5:00 pm, we'd gone through triage and Sivana had had another two bottles between those time frames!  Still no vomiting, still no diarrhoea!  Could it be???

When the doctor at Emergency examined her, he was quite happy with her level of alertness, the amount of saliva still in her mouth and her overall condition.  While there, Sivana peed her diaper like we have not seen for seven days!!!  This also made the doctor happy!  (I'll have to try that the next time I'm at a checkup and see if my doctor is as happy about my bodily movements!).

So we were sent home... where Sivana ate a whole bowl of homemade asparagus soup with some bread, drank another bottle, splashed around at bath time and tucked down happily to bed!  I, on the other hand, passed out on the couch from sheer exhaustion and barely noticed any of the commotion that is our home for a good twenty minutes of "escape".

You are incredible prayer warriors and our precious Father has heard your cry out on behalf of our daughter and has laid His healing hand upon her!  The doctor warned we may not be out of the woods just yet, but this day has brought me much needed hope and a sigh of relief that things can indeed get better for our precious Sivana Grace.

From the bottom of my heart to yours, I thank you.  If you could imagine me bowed down with my face to the ground washing your feet with my tears of thanks, that would pretty much summarize the incredible gratitude I feel for the power of your prayers.  May He bless you twice as much as He has blessed our family today!  So much love to all of you out there... Amen!

Desperate for your prayers

Life is barely manageable these last few weeks.  I have to type this at 2:30 in the morning as there just isn't time otherwise.


Ethan began throwing up last week for a couple of days with no diarrhoea only to have Sivana begin throwing up a few days later.  Sivana has been vomiting and having diarrhoea since last Thursday and no matter what we try, we cannot get food to stay in her little body.  She had a fever only on the first day and no fever since but she has lost a few pounds already and we are getting scared.  Very scared.


We are getting desperate for prayers.  I got sick with the bug that Saturday and Anika that Monday.  It is a nasty one that hits hard for a couple of days; however, my fear is now that this is far beyond just a viral flu bug...  Sivana is absolutely terrible for finding the toilet when someone has left the lid up.  Unfortunately, with a three year old and a five year old who are often distracted by getting back to play, flushing the toilet does not always happen, let alone keeping the lid down.  Sivana is our quiet one... so unless you look for her, you will not know she has found a toy cup and has been scooping it in the toilet getting "drinks".  Another fact tugging at the back of my mind is that I had made wraps the week we all got sick and had used alfalfa sprouts (which can be carrier for a deadly strain of e.coli).


So my fear now is that she has some e.coli disease!  A little further research shows that:


"E. coli O157:H7 infection often causes severe, acute hemorrhagic diarrhea (although nonhemorrhagic diarrhea is also possible) and abdominal cramps. Usually little or no fever is present, and the illness resolves in five to ten days. It can also be asymptomatic.  In some people, particularly children under five years of age and the elderly, the infection can cause hemolytic uremic syndrome (HUS), in which the red blood cells are destroyed and the kidneys fail. About 2–7% of infections lead to this complication. In the United States, HUS is the principal cause of acute kidney failure in children, and most cases of HUS are caused by E. coli O157:H7."


Another update you need to know is that Sivana's ultrasound in December showed that her one left kidney has completely disintegrated (which is good as they no longer have to worry about continued cyst growths) and the right one is enlarged (also good as it is doing all of the work).  Blood and urine analysis also show that whatever kidney function she has, it is working at 100%!!  This is wonderful to report!


HOWEVER


How is all of this taxing her poor little kidney?  We cannot afford to have anything tax her kidney!!


Please, I don't understand why it feels like my children are always the ones targeted by cruel health issues.  I have been desperate for Isabel's sake on so many occasions and feeling all too close to her passing away... particularly the one time I watched the doctor's work on her on the rescucitation table at Children's Emergency!  I have felt desperate for Ethan when he was at his worst... when it felt like a race against time figuring out his allergens... watching him writhe in pain for weeks upon weeks, losing 20% of his body weight and no longer peeing in his diapers for days!


Why do some people have healthy children that barely have to go in for their annual visit while my children battle moments of facing the fragility of their very own existence?  Why?  What have we done that our children suffer health-wise?  Why is it that while the cart in front of me at the checkout stand in the supermarket has a healthy kid smiling back at me despite his cart being filled to the rim with pop tarts, pop, refined flour white breads and other "fake foods" riddled with refined sugars and preservatives, my kids are looking sickly despite our cart being filled to the rim with fresh fruits and vegetables, whole grains and basic ingredients to make wholesome foods from scratch at home?


It doesn't make sense to me!  Why do I bother with all of this work, all of this research?  


Our paediatrician fit us in for an appointment tomorrow in the afternoon so I pray we can find an answer to what is going on with Sivana.  I have nine weeks to go with this pregnancy and I am already lacking the ability to sleep at night.  I am beginning to feel overwhelmed.

We have been working with our naturopath these last two days using homeopathic remedies and homemade electrolyte solutions but we have seen no benefit to this approach as of yet.  I am just so afraid for Sivana's kidney right now.  These two pictures of Sivana were taken only a few weeks apart but already you can see that she has lost weight.  Even this last one of Sivana was taken a few days ago.


There is much, much more going on but time does not permit me to update you on the many things that are making life feel impossible right now.  This is the most urgent and pressing issue right now and I beg for your prayers!  I pray it is something simple, like just a bug that is running a slightly longer course.  Thank you for pleading on behalf of our baby girl.  And may God almighty have mercy on her and answer our prayers for her to triumph over whatever this is.  In Jesus' precious name... Amen.

Sivana's kidney update

Have I mentioned yet how tired I am of doctor's appointments?  We have had so many of them (particularly since September) that I established a bit of a cross-referencing system to ensure dates and times are entered correctly in the calendar (both on the computer and the one on the wall).  Given the delicate art of balancing when Duane is home, when I need to nurse Sivana, when Isabel has to be picked up from school, nap times, etc... it is critical that we not make any errors with these appointments.

I applied this approach when Pediatric Nephrology left a message to say that Sivana's appointment was going to be on December 15th at 1:00 pm.  Great, it would mean finding a babysitter but we would make it work given the importance of checking up on Sivana's kidney issue.  The message asked that I call back to confirm which I did, repeating the time and date specified.

Eventually a letter was sent and once again I double checked the date and time on the calendar.  All was good.  We lined up my dad to babysit and the timing would be great... the toddlers would be napping, and given the two hour anticipated duration of this appointment, I could go straight to Izzy's school afterwards to pick her up, rather than drive all the way back to the farm and then back into the city to get her.  Not too shabby!

Lunch was rushed but eventually I got out the door.  Off we go to Children's Hospital where Children's Renal Clinic is found.  I know this hospital like the back of my hand given the ample time spent there with Isabel!  Renal clinic is in the same unit as Urology (which is where Anika was taken just last month) and a half wall away from Neurology (which is where Isabel goes).  Parking was a nightmare and finally I rush to the receptionist.  At this point, Sivana has woken up and is crying.

"Sivana Vaags to see the Nephrologist."

"Who?"

"Sivana Vaags... for the renal clinic at 1:00 pm?"

"I'm sorry dear, but we don't have a Sivana scheduled for today."

"You have to be kidding me... trust me, I KNOW that it is supposed to be today... I had a message, a letter, too!  Is there any way you could fit us in?"

"Renal clinic is not even open today.  Oh, but we do have Sivana scheduled for tomorrow at one o'clock."

And because this is more work than I can put into words, tears start flowing down my cheeks.  I had an appointment scheduled for that time but as is the duty of a mother, I dialed my husband on the cell phone, asked him to contact my specialist to cancel (with hopefully no penalty fees for the short notice) and put taking care of myself to the side...

sigh.

Well, I did sign up for this when I decided to have five children!  I just had no clue we would spend this much time seeing doctors and specialists!

Anyways, where was I?  Oh yes, the idiot standing at reception crying because despite her best efforts to cross reference this sort of data... I failed to do it right.  I of course apologize for the tears confessing that I really don't know why they are flowing like this.  The women are great and are probably an open sob away from wrapping their arms around me to comfort me!  Sivana is wailing so I make my way to a chair to try and nurse her.  The ladies paged the clinician nurse who was still around and before I knew it, there he was standing before me!

The poor guy had his jacket on and everything!  Now I don't know if he was leaving for the day or coming in but given that there was not supposed to be renal clinic that afternoon, my guess is he was trying to leave.  But bless his heart, he weighed and measured Sivana, printed off the requisition for more blood work and showed me how to tape a urine-collecting-bag to her (poor little girl didn't make a peep while we are sticking this bag to her nether-regions!).  He was fantastic.  Sure enough, we WERE there for nearly two hours afterall!

Sivana's blood work distressed her a great deal.  She very seldom gets upset about anything but holding her arm down while the woman stuck her with a needle (and dug around for a while), my poor sweet baby was nearly beside herself.  She started choking and I still couldn't do anything as the woman was still drawing blood (and showing no support or concern whatsoever).

When it was all done, it literally took about five minutes to calm Sivana down.  And even when the sobbing stopped, she would look into my eyes with big tears and "talk" to me as if to say "What the heck was that all about mom?  Did you see what that lady did to me?  And what was with you helping her??"  This of course comes out as "Waaa!  Owwww.... owww Waaa!"  But a mother knows what her children are saying... well okay, that's what I would have been saying if the tables had been turned!

The next day, I arrive to the real appointment and greet the ladies at reception again with a smile... "Hey look, I am here for the right time this time!  And I promise, I won't cry today."

They chuckle and before I know it, I am in a room with Sivana talking with the nephrologist about the blood work and ultrasound results.

Sivana has four cysts in her right kidney now... that is her good kidney.  Blood work came back pretty normal so she is satisfied with kidney function at this time but we will repeat the blood work and urine sample in three months with a follow up appointment in six months.  Ultrasound will be done again in a year's time.  Sivana will be following up with her nephrologist every six months for the next few years.

She asked if polycystic kidney disease runs in the family.  As far as I know, it does not.  She said it is not likely that it is polycistic kidney disease, but given that cysts are starting to form on the healthy kidney, she cannot rule it out completely.  If you do a quick google on that disease, you will see that it is less than ideal... the inevitable end result is kidney failure leaving the patient on either dialysis or needing a kidney transplant.  So we are hoping (and praying) that Sivana's condition will remain the simple multicystic dysplastic kidney.

And so I type this as Ethan and Anika continue to chime over the baby monitor in their room... apparently they are in need of water... again.  Sivana is sleeping beautifully (as always) and the evening is quiet with the promise of relaxing somewhat.  No research tonight, no cleaning up, no administrative poop... I think I will simply put my feet up and give thanks to God almighty for the health He has blessed me with all these years... I cannot believe what a gift (and rarity) it is!  And if only I could send some of it my children's way!

I send prayers out to find you this winter's night to keep you warm with the sentiments of this mother's heart.  May my love spill forth to find you, to comfort you, to hold you safe in prayer.  May your own bodies be healed, cared for, nurtured.  And may you think of our little Sivana tonight as she fills our home with her sunshine and gentle nature... our blessed baby girl... Sivana Grace.  Amen.

Our darling Sivana

Here we are three months after Sivana's arrival and I have barely said three words about her! What can I say? Ever since that one post where I sent out an S.O.S, she has been an absolute dream baby! I had to cut out dairy and chocolate (oh what a shame) but as long as I stick to those two dietary omissions, we have the most contented little girl on our hands!

These days, she is on the verge of giggling. Right now, tickles and gleeful smiles are enhanced by that little coughing sound which eventually graduates into a giggle. It is such a delight to be witness to these milestones!

She is my baldest baby but oh she is so darn cute! She wakes only once in the night for a nursing and every now and again, she'll go through the whole night (and I wake up in a puddle... or rather, a milk bath!). Those mornings I wake up feeling actually rested only to suddenly be met with the pain and heaviness of rock-hard (man I wish they could still look like this post-nursing) breasts!

I apologize for any visuals this may have caused and will hand out donations for therapy once this organic farming business starts to pay!! Hee hee hee (sorry, Hon!)

And being true to who I am, I will punch Duane in the arm those mornings and say "Isn't it just AMAZING that my body produces ALL of Sivana's nourishment?? And weigh a tonne in the process?? Women's bodies are sooooo cool!!!"

(Please remind me of these statements post-nursing when this woman's body deflates into a state of "what-the-heck-just-happened???")

Sigh.

Wednesday we meet with the nephrologist (kidney specialist) to discuss her multi-dysplastic kidney issue.  We sent blood work in a few weeks back to make sure everything is working well given her one-kidney function.  So far so good... praise God!  Never a dull moment around here!

Suffice it to say that life is gloriously hectic but we cherish the privilege we have as parents. And Sivana has found a place in this family that just perfectly fits in the palm of our hearts... if there is such a place... now wouldn't that be interesting??  Oh good grief, I just can't keep my mind from bouncing around like a ping-pong ball!  Let's try this again... Sivana has blended into our family effortlessly and her presence adds a wholeness to our world beyond all these pathetic attempts at words could ever say!

And with that, my dear ones, I shall bid you adieu as I head off to bed.  Isabel's music is playing softly in the background as she sleeps, the little ones are no longer chiming over their baby monitor and Sivana's breathing over her monitor is indicative of a sleeping angel in our midst.  May you be greeted with beautiful dreams tonight or at the very least, a peaceful night's sleep.

Goodnight, God bless and sweet dreams!