Wednesday, 25 March 2015

Bring on the Rain

I love the rain: The soothing plip plop pitter patter, the fresh smell of soil it uncovers
and the cozy feeling it evokes when cuddled soundly in the house.  Unfortunately it also brings in the mud.  Last summer we had our foundation wrapped/sealed and we ended up with a dug up front yard full of unseeded mud.  We even had to take out the porch, leaving the front door 6 feet off the ground.  Our normally unused side door has become the awkward main entrance and the walkway a giant pudding bowl of mud.  Just imagine me carrying a baby carrier in one hand, a cup of coffee in the other, my purse over my shoulder with a two year old trailing on my heels, opening the door to a very excited dog bursting her way outside.  Coffee goes on the table, the carrier's placed gently on the floor and I ask my two year old to try and take off his boots while I go back outside to grab the groceries from the trunk.  Between the little boy stomp prints, my own rubber boot imprints and the very widespread paw parade, by the time all is said and done, there is mud in just about every room in my house.

I can't help but see this as a life metaphor.  How quickly can our lives turn chaotic by opening a door expecting to "get out of the rain" but end up finding ourselves up to our knees in mud. My pregnancy was full of hospitalizations and nerve wrenching test results.  I thought that once Gideon was born I would be in the clear.  Now I find myself in the depths of the muck as we go through doctor appointments, hospitalizations and surgeries; facing the worst- our unknowns.

I think that when in this position, what we do with the mud is important.  If I tried to clean up all that mud as soon as I got in the door, it would smear everywhere and just make matters worse.  I find that if I just sit back, drink my coffee and let it dry, I can easily sweep it up and mop up the remaining dust with ease.  In my current situation with Gideon, I need to learn to sit back a little and just try to enjoy my time with the beautiful little boy that has been given to me.  Sometimes I seem to get stuck in the muddy mess of life's chaos, rushing here and there, I forget what's really important to me.  So I say bring on the rain.  Help me to remember to enjoy the simple things in life and to wash away all the non-priorities that bog me down.

Sunday, 22 March 2015

Welcome Spring

Spring has officially sprung.  Here's a little proof to brighten your day.























Thursday, 19 March 2015

Hearing Aid Blues

Gideon has been making leaps and bounds since his last eye surgery.  Prior to this you could wave your hands in front of him and there would be no visual response.  He wouldn't even blink or flinch as an intuitive protective reflex.  After his second cataract surgery, he has now started to track objects and he has even been smiling in response to my smile.  It's like a switch has been flipped.  It's amazing!  I'm sure he still is considered to have low vision, but in comparison to what he was doing before... it's like night and day.

Unfortunately the hearing side of things are at a standstill.  We know that his hearing has decreased since his first assessment and that he will not be able to have surgery until next fall or winter.  Since our ENT is pregnant and wont be able to do the surgery before she goes on maternity leave, the plan was for him to get hearing aids while we waited.  Now our Audiologist is on a sick leave.  Her office is a mess and no one there knows what's going on with our file.  *sigh* The poor little guy just can't catch a break.

Gideon is now almost seven months old.  He has been living in a low vision world that is rather quiet.  He's at an age where he needs as much stimuli as he can get and it's so frustrating that he's in this situation.    


Wednesday, 11 March 2015

Curious George goes to the Doctor

I brought Alex in to see the family doctor today because his tonsils looked a little swollen.  He had Strep back in January and I'm thinking that's what this is again.  Last time he had strep throat he had a very sudden seizure and I'm a little on edge because of that.  Of course going to see the doctor is a big deal right now.  Alex wore one of my grade 8 science fair medals around his neck and brought his "Monkey George" to see the doctor.  He was a little nervous at first and then he saw the stethoscope.  He loves using a stethoscope to listen to his heart.  It's so cute cause when he plays doctor at the house he always makes heart sounds.  He asked for it right away and the doctor was so good and let him examine everyone with it.  Curious George has never been in better health.  With throat swabs done and all medical equipment sanitized, it was time to leave.  I did a little grocery shopping and made some lunch when we got home.

Then it was nap time...

Alex in bed - Check
Socks off - Check
Blue Blankie - Check
Monkey George - ??? MIA ???

Yes that's right, Curious George was left at the doctor's office.  The most beloved toy my two year old has by his side almost everywhere he goes was sitting alone in the coat room of the doctor's office.  *Palm to Forehead*   So no there will be no nap time today.  The doctors office is a good half hour away from the house and now I have to get everyone bundled up, in the car to go and pick up the curious little monkey who likes to get into trouble.  Now where is my yellow hat?  

UPDATE

I now have two very happy and tired little monkeys safe and sound at home.




Tuesday, 10 March 2015

Our Little Kettle of Fish

Our little Gideon is a bundle of mystery.  The geneticist has ruled out quite a few syndromes but she has not been able to pin him down yet.  Some syndromes that he is being tested for have worse outcomes than others and it seems that new puzzle pieces keep popping up.

Here is a breakdown of the clues we have gathered:

Ears:   - Ear Pit
           - Low Set
           - Mixed Hearing Loss (moderate to severe)
           - Fluid in ears

Eyes:  - Recurring Cataracts
          - Micropthalmia

Mouth: - High Palate
            - Split Uvula
            - Dental abnormality?

Kidney: - Right Multicystic Dysplastic Kidney

Urinary Tract: - Natural Circumcision

Miscellaneous:  - Being tested for hormone imbalance and possible endocrinologist consult
                        - Upper limits of normal/high levels of calcium
                        - Large soft spot
                        - Weak suck and feeding difficulties
                        - Slow growth

Two very rare syndromes that are being discussed are BOR (Branchio-oto-renal) syndrome and BOF (Branchio-oculo-facial) syndrome.  Unfortunately the main gene mutation that causes BOR has been ruled out.  There are two minor genes that can causes BOR but unfortunately the lab that was testing for these doesn't do this any more.  We will have to wait another two months to get the results for the BOF syndrome.  These two syndromes do not usually involve any cognitive issues and are the preferred diagnosis.

The Plan:  Gideon saw the ENT last week and the Geneticist yesterday.  The ENT told us that Gideon will need surgery to take the fluid out of his ears.  This should help with his hearing loss but it will not give him perfect hearing.  Unfortunately our ENT is pregnant and will not be able to do the surgery before she goes on Mat leave.  This means that Gideon will be getting hearing aids in the mean time.  The Geneticist did some lab work yesterday to test his hormone levels, calcium levels and to test for other less positive syndromes.  (Sometimes it feels like we are playing pinata and just swinging a stick hoping to hit something)  She wants to do an MRI on his head and, depending on the hormone levels, possibly a referral to the endocrinologist.

So the waiting  continues...
                     




Tuesday, 3 March 2015

Albert Has Been Called Home

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. - John 16:33

The first thing Albert would want me to say is that Christ is his Lord and Saviour and he would want all of you to know about this amazing salvation too.  He would also want you to know that, like him, you can find hope and peace  in Christ.  Christ has overcome the world- Praise be to God.  There are very few people that lived out their faith like my father-in-law and there are no better verses to describe the Godly character of Albert than Galatians 5: 22-23.

But when the Holy Spirit controls our lives, he will produce this kind of fruit in us: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control. -            Galatians 5: 22-23  

Albert was such a kind and gentle man.  He welcomed everyone without condemnation and smiled upon all of us.  He shared in our joys and lamented in our sorrows. He was faithful to his God through so many trials and tribulations; all of which strengthened his character to truly reflect Christ's glory.  He had peace in his heart and he knew that it was well with his soul.  The Spirit was truly at work in his life.

The love and joy he overflowed with when he was with his family, especially the grandchildren, would make any heart melt; that twinkle in his eyes, that beautiful, addictive smile and the jokes.  You'd have to be on your toes around him or those sly jokes would go right over your head.  The number of charities that Albert supported would truly make you rethink the generosity of your own hands.  Even while bedridden in the hospital, he made sure that his church offerings were up to date.  One of the most enduring things about Albert was that he always started and ended his meals with a prayer.  I loved how he read scripture out loud to his children and grandchildren.

I love my father-in-law deeply. I know that there is both sorrow and rejoicing to be found as we move through this difficult time in our lives.  Albert always wanted to know "what is best" and I think that now he truly has found it.  He has been called home... the best home... a place where he is reunited with his beloved wife, a place where he can feel no pain, a place where he can be in the presence of God.

I offer up this verse to all of you who are grieving right now.  Draw close to God, and God will draw close to you. - James 4:8  Find peace in His presence and comfort in His arms.

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Whom have I in heaven but you?  I desire you more than anything on earth.  My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. - Psalm 73: 25-26


I assure you, those who listen to my message and believe in God who sent me have eternal life.  They will never be condemned for their sins, but they have already passed from death into life.  - John 5:24



God blesses the people who patiently endure testing.  Afterward they will receive the crown of life that God has promised to those who love him.  - James 1:12