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Wednesday 30 December 2015

Happy Holidays and Christmas Blessings

The Christmas season is almost over with New Years approaching fast.  It's strange how this time of year traditionally is one of hope and joy yet emotionally it seems to be challenging me.

1. This is our first Christmas without Albert, my deeply missed father-in-law.  Christmas with him never felt superficial or inauthentic.  There was a beautiful simplicity in the Christmas dinner and the time of gift giving somehow left you calm and full of peace.  Christmas with him was not about long drawn out chaotic gift wrapped explosions, or trying to impress others in some attempt at grandeur but a message of Christ and of love.  I miss him.  

2. Gideon has been throwing up again and last night he was fevered.  It shakes me when he gets like this- I literally got shaky when he threw up all over me, head to toe, at the last Christmas gathering.  His episodes of getting sick are not easy to endure.  When he throws up it's not just once, it's multiple times all in a row with this eerie stillness between each projection and I don't know if he's choking or aspirating. I hardly ate anything and it was so hard to focus on conversation.  My nerves are shot.   (As I was writing this he threw up again, splattering my living room, inducing a redressing interlude.  My new spittle smelling pony tail makes me sad.)

3. My creativity and resourcefulness feel flat.  I haven't been able to focus enough to knit and my lack of employment leaves me with an empty slot where I once found a use for my gifts.  I tried to sew a princess dress for my niece but I became disappointed with the results and didn't even finish it.  Even my desire to write has diminished.  

Prayer for the day: Renew my spirit O Lord and fill me again with your joy that it may over flow unto others.  Grant me peace and beautiful sparks of creativity that will energize and bring forth a newness in our lives.  
---
Psalm 51, 7-17
    7 Cleanse me with hyssop, and I will be clean; wash me, and I will be whiter than snow. 8 Let me hear joy and gladness; let the bones you have crushed rejoice. 9 Hide your face from my sins and blot out all my iniquity. 10 Create in me a pure heart, O God, and renew a steadfast spirit within me. 11 Do not cast me from your presence or take your Holy Spirit from me. 12 Restore to me the joy of your salvation and grant me a willing spirit, to sustain me. 13 Then I will teach transgressors your ways, and sinners will turn back to you. 14 Save me from bloodguilt, O God, the God who saves me, and my tongue will sing of your righteousness. 15 O Lord, open my lips, and my mouth will declare your praise. 16 You do not delight in sacrifice, or I would bring it; you do not take pleasure in burnt offerings. 17 The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise.

Friday 11 December 2015

A Swing and a Miss!

We have been waiting for months for the results of a genetic test and today we got the call that Lowes Syndrome has been officially ruled out!

This is good news but it also means we still don't have a diagnosis; there is still a great big unknown looming over us.  So what is the next step?  More genetic testing.  Testing that involves comparing both John and I's genes with Gideon's.  We also have a date in January to see a neurologist in followup to the MRI we had.

So the game of Pinata continues...


Wednesday 9 December 2015

Christmas Card DIY

So with all this time to myself, I've had time to do something I have never done before; I've sent out Christmas Cards. 

Yes, it's a little embarrassing.  We have received cards from friends and family over the years, but have never jumped on the Christmas Card Bandwagon.  With this being our fist year, I wanted our cards to shine a little, so I embossed Merry Christmas in braille.  How? - A couple of weeks ago, our early years center was cleaning out some of their nooks and crannies and they came across some low vision literature that they thought I might be interested in.   Amongst their finds was a Parents Braille Kit given out by the CNIB.  Although it seems to be missing the Story Book, it did have the stylus, slate and the Grade One Braille Home Study Guide.   
 

You have to write all your letters backwards when using the stylus punch and on the back of the page, so the braille will be raised.  I think I only messed up 3 cards :)  I got better as I went along. 

I think the end result was really nice.  Even though no one in our family reads braille, I hope I'm creating awareness about low vision and the challenges of inclusion for all people in our society. Merry Christmas Everyone!

(You can buy a braille stylus and slate from the CNIB Store for under 15$.)   

How are you spreading Christmas cheer this year?  Have you had any challenges with trying to be inclusive during the holidays?

Wednesday 2 December 2015

The Times They Are A Changin'

So this post has been a while coming.  It has been something I've been putting off because it's been very challenging for me to come to terms with and it has had such an impact on my own personal identity.

This is my first week of official unemployment. - Yes I have put my career on hold.

There are a number of factors that have contributed to this life changing event and I have been surrounded by both support and disagreement over this decision within my personal circles.  In the end, I feel that this is the best decision for my family and for myself.

One of the major factors of this decision comes down to the fallout of stress in families.  If you haven't gathered by now, having a child with multiple medical issues can be stressful.  This stress manifests itself in a number of different ways and all these manifestations have their own degree of fallout.

Some of this fallout includes:

1. STRESS TRANSFER: Stress leads to anger and frustration being transferred.  This is transferred onto our spouses, onto our children, onto the dog, onto our friends and family and even onto the cutting board when chopping veggies.  My calm and controlled self seems to loose it's temper, become emotional or become overwhelmed.

2. SIBLING SYNDROME:  The stress on Alex these days has been very challenging for me.  He has not been dealing well with days that are "not routine".  He cries when he can't come to doctor's appointments with Gideon and I.  He worries if I'm not at home when he has to go to bed because I'm home late due to medical appointments.  He worries that when I go to a doctor's appointment that I will have to stay at the hospital.   He feels sad and angry when he can't participate in the therapy sessions that go on in our home and wants so badly to be praised for showing off the skills that Gideon has been working on.  He has not been listening as well and is looking for attention, anyway he can get it.

3. SOCIAL ISOLATION: Finding time to be social can be challenging, let alone finding the energy to be social.  When there is free time, John and I usually just want to "be still".  This means we don't have much of a social life- with our friends, let alone by ourselves.

4. EMPLOYMENT ISSUES:  Stress has an impact on all areas of our life.  Months ago, John was called into his boss's office because his "productivity had decreased".  This was after his father had past away and Gideon's cataracts had come back a second time.  Really? Seriously?  (I don't think this really helped in the core issue of stress impacting work productivity- what do you think?)  Trying to juggle medical appointments, therapy sessions, hospitalizations, daycare schedules, coworker strife, making up lost time, office politics along with grieving the loss of a loved one, grieving over the loss of a child's health, all colliding with the unknowns of the severity of Gideon's health issues makes employment difficult right now.

5. FINANCIAL STRESS: Our contact lenses are not being covering by ADP because our eye surgeon was temporarily not registered as a ADP distributor (was overdue on the membership fee?) at the time of our prescription.  So even though she is now a registered distributor again, we still do not have our lenses covered. Each lens is $270 each.  The red tape on this has been so frustrating.  I am applying to have our Pediasure costs covered (his formula) and hopefully this will be approved, because he is still not eating solids at 15 months and 9 bottles costs us about $10.  (He drinks about 6-7 bottles a day.)  There is also the cost of gas and parking during medical appointments.

Although our financial stress is real, it has not felt as stressful as the other fallout stressors.  We have always had enough and have never lived beyond our means.  I think this fact made my decision to put my career on hold more palatable.

I know there is more fallout I could bring up but today both boys are in daycare and I have the house to myself.  My plan of action is to clean the house and organize my life in an attempt to decrease the chaos :)

Thursday 5 November 2015

Breakfast Time - Not worth the battle



I asked Alex if he wanted pancakes for breakfast today.  
He said, "No! I want peas"
He ate a whole bowl full and then asked for seconds.


"All we are saying is give peas a chance."

Tuesday 3 November 2015

Eye and Physio Update

On Friday we went to the University of Waterloo's Paediatric and Special Needs Optometry Clinic to have Gideon's eyes assessed.  We didn't have his lenses with us because the person calling us with the appointment told us he shouldn't have them in during the appointment.  Unfortunately the opposite was true and he should have had them in.  They tried to do the assessment with his glasses on. The end result was 20/300 vision with his right eye being stronger than the left.  We will go back in three months for another assessment.

I met with physio yesterday and she would like us to buy a "vasi vertical stander" for Gideon.


The assistive devices program (ADP) should cover the cost of a very basic version.  If we want to upgrade than we will have to pay some extra. 

This device will help Gideon stand and hopefully help orientate him to being in a vertical position.  We have no idea how long he will need this for.  

(My heart broke a little more with the realization that he needs equipment like this. Sometimes it is hard to hold back my tears.  I wish I could just make everything better.)   

Bad Day

What would you do if you found out your co-worker didn't think you should keep your job if you couldn't work 5 days a week in 6 months time due to your child's medical appointment obligations?

Answer- Cry.

Friday 23 October 2015

Now You Know

Now you know:  Batman is faster than a cheetah!
The other day Alex wanted to have a race: I was suppose to be a cheetah.  He was going to be Batman.

He then explained that Batman was going to win the race with his rubber boots.

Now you know.

Thursday 15 October 2015

Pneumonia Blues

Gideon was admitted to the hospital Tuesday night with pneumonia. After a short stay, we are now home with new puffers, antibiotics and a dose of steroids.  He's still coughing but the medication seems to be helping a lot.  We had another EKG done at the hospital which suggested that there might be some thickening in his heart muscles.  We will have to go back to get an Echo done.

I am tired and my spirit is drained.

 

Monday 5 October 2015

Downs and Ups

The boys are asleep.  They are just as exhausted as both John and I are.  This past week we have shifted between exhaustion and alerted anxiety as Gideon went through yet another "sick spell".  Gideon had an Upper GI study done on Wednesday which left him constipated due to the barium he had to drink for the exam.  He was throwing up and screaming in pain while trying to have a bowel movement.  He was also throwing up his bottles because there was no room left for food.  I brought him into the local ER twice on Saturday (we were discharged at 2:30 in the morning) which hydrated him with an IV and gave him an enema that helped him get rid of some of his stool.  On Sunday, he was still throwing up his bottles so I brought him to the one hospital in the area with a Pediatrics team.  They admitted Gideon after he projectile vomited in the ER room, leaving multiple pools of regurgitated formula on the floor, my lap, my shoes etc.  Poor Gideon had to get an IV in his head because they couldn't find anything suitable on his arms or feet.  Then the IV came out.  They put another one in his head after he was admitted; This one too malfunctioned and had to be abandoned.  He fortunately was able to keep the electrolyte fluid down through the night and did not have any vomiting.  We were discharged this afternoon on a clear fluid diet.  Tomorrow I will try and introduce small regular feeds throughout the day and keep an eye on his temperature.  Please send us your thoughts and prayers that he will climb over this feeding hurdle once again.  

Finding purpose and reason at times like this is so challenging.  It's hard to understand why Gideon has to go through so many struggles.  On top of all his physical ailments, he has to be tormented with difficult IV's, have his hair ripped out/cut out from bad IV tape jobs, be interrupted for vitals just when he has settled and fallen asleep- the poor little guy probably thought he was being tortured.  It was completely heart wrenching for me to watch and even worse when I couldn't console him.  I find myself searching for and calling upon inner strength that I had no idea even existed - and that's probably why I'm so exhausted.

Why is it that I turn inward instead of towards my faith?

I feel burnt out.  I feel lost. I feel like the rug has been pulled from under my feet.

Yet my faith holds fast.  I grasp onto it; some days it grasps onto me.  Somehow it propels me forward.

Tonight I read through a blog from a very dear friend of mine who is going through her own struggles. Her encouragement has really struck a chord with me.  If you are looking for something uplifting and faith renewing, please check out her current project "31 Days of Encouragment" -   Beautiful Susan

Monday 28 September 2015

*Cough* *Cough*

I brought Gideon to the hospital yesterday to get him checked out.  He has a nasty cough/wheeze and was even throwing up yesterday. (Whole bottles!)  With our current feeding issues, I wanted to make sure he didn't have pneumonia (infection in the lungs) due to aspiration.  The chest xrays looked fine but he sounded really crackly.  The doctor gave us a prescription for two different puffers and told us to keep on eye on him.  Last night he actually slept.  Prior to this, my poor little chickadee had not been sleeping so well with all the coughing and wheezing; I'm glad the puffers are working.  He's still a little crankier than usual.  On the up side he's loving the snuggles, which I am more than happy to give.

Let's all hope that the puffers keep the pneumonia at bay and this clears up sooner rather than later.        

Friday 18 September 2015

Eventful Week

1. I have started back at work for two days a week.  My work place is being fairly accommodating by letting me return to work on a temporary part time basis and working up my hours, back to full time, over time.  This has been a very difficult decision for me.  It has been tormenting me for the past few months.  I knew that Gideon was not ready for me to go back full time and that a full time schedule would not be able to accommodate all the in house workers that he still needs to see. (Physio, OT, Dietitian, Speech, Low Vision)  I thought that I should at least trial it.  To be honest, it's still really difficult for me to say if I am hoping this will succeed or not.  I guess this is where blind faith comes in.  I feel like I can only sit back and watch as things go in whatever direction they may - Laissez-faire - not interfering, just floating along as usual, letting life's events dictate our course.

 2.  Gideon has started daycare.  With me returning to work, Gideon has started attending a daycare for two days a week.  We had to put him in a larger center, rather than a small in home daycare, so he could receive the funding for one on one services. This means that Alex and Gideon are going to two separate places and our morning drop off's are tight- very tight.  Gideon's first day went really well.  My only concern is that it is a French daycare.  Because Gideon is blind, he needs a lot of auditory cues letting him know what is going to be happening.  Maybe the French will be confusing, maybe it will be stimulating, maybe he will come home one day saying "le waaaaaa"- only time will tell.

3. Test results have come in.  We had our eye exam under sedation on Wednesday.  Our eye surgeon said that the cataracts are nowhere to be seen and that his eye pressures where looking good.  She did reassert that the back of his eyes are very under developed- this would be his Anophthalmia/Mircophthalmia   .  One blessing is that his manifestation could be far worse and that it doesn't really effect his appearance.  She also mentioned that his eye prescription has changed slightly- I'm not sure what it is now but it should be in the mail.

We also saw the geneticist on Wednesday.  She is doing a test to rule out Lowes Syndrome .  She also reviewed the MRI Gideon had last month.  There was some thickening in specific parts of his cortex.  The radiologist didn't know how to interpret what he saw so the geneticist is referring us to a neurologist.  We also talked about what our next step would be if Lowes Syndrome does get ruled out- an expansive exome sequencing test that would compare Gideon's gene's to both mine and John's.  It usually results in a 25% chance of finding a diagnosis.  This test could, if we wanted to, also find gene's responsible for medical conditions not associated with his syndrome ie. a gene responsible for colon cancer. Because John and I are also submitting samples, we have the option of learning about our own genes and if we have any that can impact our health.  Whether we actually want to know this is another question.  If it comes to this test, we will have to think hard on it.

Friday 11 September 2015

Tips for Parents Still Fighting Personal Hygiene

I'm not sure exactly when I gave up my own personal hygiene needs in lieu of parenting.  I think it was somewhere in-between giving up my fashion sense and my sad demise of variety in the kitchen.  Here are my time tested tips to help other parents completely give up on their hygiene too.

Tip #1:  Showers are a luxury item just like a fine wine or a date night.  Having time to shave your legs in the shower is even rarer.  Long pants and socks are your friend.

Tip #2: If your infant throws up in your hair, just pull it up into a pony tail or put on a hat.  See Tip #1 for clarification.

Tip #3: The same pair of jeans can be worn around the house for multiple days (or until you actually have time to do the laundry) unless you encounter that scene from the Exorcist that leaves you sitting in puddles. I draw the line at wearing soaking wet puke jeans and t-shirts that are stuck to your back with spittle.

Tip #4: Make-up and shaving are designated for doctor's appointments, in a heart felt attempt at looking put together and "being on top of things".

Tip #5: Take advantage of the fact that your clothing has multiple purposes:  Nose wipes, face wipes, spittle rags, and drool catchers all can be replaced with your everyday attire.

Tip #6: Long hair = Fashionable - Seriously who has time to visit a hairdresser with all those other appointments in your life? Plus pony tails and hats- right?

Tip #7: Who needs perfume or body spray when you have deodorant?  One application in the morning and you are good to go.  Plus if you forget to apply it or are distracted with all the things needing your attention, all the better.  Embrace your inner hippy.

Tip #8:  Do brush your teeth but remember to push off your regular dentist appointments in lieu of your child's appointments/ homecare schedule.  This can also apply to your own doctor's appointments and any other personal appointments that do not involve severe bleeding, broken bones or lost limbs.

Tip #9: Being adorn with wet, snotty, drooly, kisses will fill you with *joy.  Embrace your joy.
                                       *Joy = germ infested juices that crust all over your face.

MOST IMPORTANTLY

Tip #10: Treat yourself once in a while and you will enjoy it and appreciate it.  You will savour every last bit of it.  Wash your face with a high end soap.  Paint your toe nails. Soak in a tub. Buy yourself one of those fancy electric toothbrushes that makes you feel like you just left the dentist office.

Embrace all the simple pleasures!  
 
Do you have any tips to add?

Friday 28 August 2015

Happy Birthday Gideon

Happy First Birthday Gideon!


On Wednesday, Aug. 26th, Gideon turned one.  Here are just some of the goodies he got:



High contrast books


200 Plastic Balls 


Glowing Orb



Musical Projector

Wiggly Caterpillar

We tried giving Gideon some whipped cream but he really didn't like the feeling of it on his fingers.  He got seriously sad :(  Other than that, it was a really great day.


***
I know a lot of you are wanting to see a picture of Gideon in his new glasses so I snapped this picture before I put in his lenses.  There probably won't be too many pictures with him in his glasses.  They are mainly for when we loose one of his contact lenses or if we actually have a weekend away from the kids.  Look! He's yawning... soooo cute!



Friday 21 August 2015

Gideon's Glasses

We finally have glasses for Gideon!


They are a little thick; About as thick as a penny... lying flat.


Oh so cute!


Thursday 6 August 2015

Gideon's New Hearing Aid

Last week Gideon got his new hearing aid.  Since we had the fluid taken out of his ears and tubes put in, his hearing has improved by leaps and bounds but he still has a bit of a loss.  His right ear has normal to mild hearing loss and at this point we don't need to aid it.  His left side has a mild to moderate hearing loss.  The audiologist questioned if we even needed to aid it because his right ear was doing so well but because of his visual impairment I thought it might have some benefit.  So far he has been really tolerant, pulling it out only when he has dropped his toys.  When we picked it up the audiologist realized that the company had forgotten to put a lock on the battery case so she gave us a water resistant cover to hold it in place.  We've already gotten a call to pick up a new battery door with a lock, but I just haven't made it there yet.

Side Note:  When I went to put Gideon's contact lenses in this morning I realized that one of them was ripped.  I only have one "spare" one right now.  It is a lost lens that I found on the floor in front of the dryer.  Pop Quiz - Would you wear a contact lens that most likely went through the washer and dryer?   

Tuesday 28 July 2015

Eyes, Ears and Kidneys OH MY

A couple weeks ago we went down to London for a some follow ups.  Here's what came out of it:

1.  His eyes are still looking clear with no sign of the cataracts.  The doctor would like to do another eye examination under sedation to take a good look at his pressures and his optic nerves.  This will be happening in September.

2.  While visiting the Ivey Eye Institute , I stopped into the eyeglass store.  I had inquired the last time we were there about getting glasses for Gideon.  His eye glass prescription is +25 in both eyes and because he is so petite the glasses he needs are very small.  She had to do some research to find a pair that would work for him.  Well she found some!  I paid for them upfront and we should be getting them in a couple of weeks.

3.  We saw the kidney specialist.  Gideon's bad kidney has shrunk to 2.8 cm and his good kidney is looking fat and juicy.  This is what we want to see :)  Our next appointment with her will be a whole year away.  (Crossing our fingers that nothing new will creep up during that time)  Because of Gideon's undiagnosed syndrome, we'ill have to be on our toes.

4.  We had a hearing aid mold taken of Gideon's left ear.  I will being visiting the hearing aid clinic (only 30 minutes away-  Thank you Jesus for short car rides!) later this week with a new hearing aid.  The only issue here is that our ACSD funding (Assistance for Children with Disabilities) has still not been approved.  We applied for this many many months ago and have heard nothing back from them.  This issues has been on my radar for awhile, but life has been just busy enough that it stayed on the back burner.  Now that our lifeboat seems to be taking a leisurely jount down a lazy river, I think they will be getting a personal call from me later today.  

OTHER NEWS:

Gideon's food fight has continued to battle on.  The finger lights help, but his independence is raging and winning the war.  He will clamp his mouth shut when he see's me coming.  We have also had struggles with textures.  He does much better with very smooth textures (ie. yogurt) but not so well with lumpy textures.  Sometimes he will throw up a mucus mixture with the very first hint of texture.  Sometime he will just gag and make terrible noises.  He also will sound wet after/during a feed, which is concerning.  Occasionally he will even start to cough.  The speech therapist wants to have a swallowing test done to make sure he is not aspirating.  Aspiration is when food will go down into your lungs instead of into your stomach.  The food in your lungs can lead to infection/pneumonia.  It could also mean a modified diet lasting for who knows how long.  Let's all pray that he will be able to strengthen his swallowing and neck muscles to be able to eventually achieve a normal diet and that he will be able to be weaned off of bottles before he reaches the age of 5.  *sigh*  No, feedings are not going well.

Gideon is still struggling with his gross and fine motor skills.  He prefers to be on his back and will roll himself over whenever I place him on his belly.  The sitting situation is not fairing much better.  He throws himself back as soon as he is upright.  All of these issues further weigh me down in my decision about employment post Gideon.

Prayer of the day:  Lord grant us insight and discernment into the life changing decisions we are facing today in the midst of our grief and anxieties.  Grant us peace in our decisions, that they will be made in accordance to your will in our lives and not be made out of fear or angst. Quiet our spirits so we may hear your voice in the midst of chaos and strengthen our bonds to unite us in mind.  Amen.                          

Thursday 16 July 2015

Haiku

Born clouded and blind
The grey wool was pulled over
Your elephant eyes 

Tuesday 7 July 2015

Food Fight

Introducing solids into Gideon's diet has been challenging.  Because of his eye surgery, he can't get anything in his eyes due to infection risks so this means playing with his food is not really an option because he could rub it in his eyes.  This lead me to making buzzing sounds and tapping my spoon against his mouth in hopes that he would open wide and eat what I had to offer.  BUT.... Every time I tried to feed something by spoon he would have a meltdown.  He would thrust his tongue out, arch his back and just generally complain a whole lot.  I tried shoving it in.  I tried scraping it on the top on his mouth.  I tried making him smile so he would open his mouth for a stealthy attack.  Nothing was working.

Insight of the day:  Having unknown things shoved into your mouth when you don't expect it isn't very fun.

So we took it back a notch.  I tried putting the spoon by his lips and just dabbing the smallest amount on there for him to try and taste.  He started tasting it.  I put my spoon by his lips and tried to have him be the one to initiate the bite.  Kind of like feeding a horse, the lips will smack a little, the tongue might come out for a taste but you don't put your hand right into the mouth.  There was some success with these methods but it was hit or miss and I really wasn't getting much food into him.  Gideon was experiencing the food but not really eating it.


That's when I decided to buy a light.  I found these finger lights at the dollar store- 4 lights for a dollar.  (Red, Green, White and Blue)  First I tried attaching the red light to the spoon.  Guess what- IT WORKED!  The light gave him something to look at and made eating a little more fun.  He also knew when the food was getting closer to him.  I think he was so distracted by the light that he just auto piloted the eating.  This is not to say that he is eating whole bowl fulls of food but I can at least get in 5-10 spoonfuls in which is huge!  



     Some pointers...

1. It works just as well to have the light on your finger.  (I snapped the strap on my red light by stretching it too hard to stay on my spoon.)  Having in on the spoon was nice though because you could point the light right at the end of the spoon where the food was.

2. Don't point the light right at your baby's eyes.  This light is pretty bright and I found it uncomfortable when pointed at my own eyes.

3. Try out different colours of lights.  There might be a preference to one over the other.  Remember that red is usually an easier colour to see for children who are visually impaired.

What tricks have you used during your food fight battles?  

Saturday 20 June 2015

Depression kicks you in the teeth

Patty cake patty cake bakers men
Put my mommy together again
Kiss her, pat her, mark her with "OK"
And help her smile sincerely today


I don't know where it springs up from.  I don't know why it hits so hard.  I don't know why, when I have such amazing little boys that smile at me, that need me, that make my world so beautiful, that I feel like crying.  Most days it's just a fleeting moment.  Some days it will last through the morning.

Today Alex has declared me a robot with a box on my hand.  He just gave himself a banana trophy for being a giraffe that locked up monsters in his room -Then he married a T-rex.  As I write, we are trying on fake mustaches.

As quickly as I felt that swift kick in the teeth, a switch is flipped and the weight is gone.  The sadness, the pain, the forced smiles all dissipate and I feel more like the self I use to be.  The person I was before my life of doctors appointments, home visits, sleepless nights, google obsessions and anxious overtones came to be.  These things are still there, in the background, but for a moment I allow myself to forget, to relax and enjoy myself with sincerity.  I thank God for these moments.      


Friday 19 June 2015

Happy Birthday Alexander!

My beautiful little boy has turned 3!

Today we had some of Alex's friends and his cousin over for a little birthday party.  It was so nice to have a day all about him.  Most days when someone comes to visit the house, it's to come see Gideon.  OT, PT, Speech, Low Vision, Dietitian, Infant Development... Alex always feels left out.  Having people over to see him and celebrate his special day was just icing on the cake!



I often sit with Alex and flip through the flyers that come in the mail.  I try and introduce new vocab and do some letter and number recognition.  About a month ago we came across a picture of a pinata in a bulk food flyer.  He was enthralled with the idea.  He said he wanted one that looked like a giraffe and that was when I made up my mind to find the time to make one.  I haven't done paper mache since I was 9 but I think it turned out pretty well.          


It was a really great day and I know Alex had a blast!

Wednesday 17 June 2015

Up Up and Away....

1. Gideon's hearing has improved since his surgery and the right side is now mild to normal hearing and the left side is moderate to mild loss.  At this point we are looking at only putting an aid on his left side and monitoring him as we go along.

2. We had a follow up with our eye surgeon and the cataracts are nowhere to be seen!  His eyes are looking beautiful.

3. Alex will be turning 3 this week and he seems to be getting sweeter and cuter everyday.  He asked for a giraffe pinata and mommy's cake.

4. Alex has started using the potty :)  With the chaos of his life, it has been tricky to get this ball rolling.  He was refusing to sit on the potty at all but yesterday he even went to the potty at his sitters house.

5. Our church community has been amazing.  We have been blessed in so many ways.  It always seems that these blessings come at just the right time.  Thank you!

6. The boys slept in this morning- ie. Gideon went back to sleep after his 6:00 feed and Alex didn't wake up until 7:30 which gave me some quiet time to drink a coffee and ready myself for the day.


Yes the sun is shining and the day is fresh.  Let's keep this mojo flowing.

Tuesday 2 June 2015

Gideon's Achievments

I just realized that I really haven't shared all the amazing things that Gideon has been achieving.  Because he lives in a world with less stimuli than me and this makes it harder for him to gather information about the world, small achievements become rather large achievements when put into perspective.

At 9 months old:

Visual Skills:  With the cataracts gone (**really trying to believe they are gone for good**), his vision has really improved.  He is tracking objects, not just lights, and will look at things he is touching.  His eye contact is still hit or miss, but I find being right up in his face, almost touching his nose, helps.  I think he has been fighting his microphalmia.  In the beginning, I think he was only seeing light perception or something close to that.  For me, his gains have been like night and day.  Yes he is still blind, but he is blind with sight LOL.

Hearing: Now that the fluid is out of his ears, I think there has been an improvement in his ability to hear.  He is starting to turn to some sounds and I'm sure he can hear me when I sing to him.  No news yet on the hearing aid situation.  I have an audiology appointment in the next couple of weeks and hopefully this will sort things out.  

Language: Gideon has not really been babbling a whole lot.  He does make vowel sounds and the occasional "b".  He has started to do a lip smack which has been fun.  There has not been a whole lot of verbal communication but there has been some non verbal.  He will move his arms and legs when he is excited.  He will smile when I tickle him or play peek-a-boo.  He will even giggle a little one in a while.

Gross Motor Skills: Gideon will roll from side to side and occasionally from front to back or back to front.  He is starting to tolerate sitting with support for longer periods of time.  Having something in his hands seems to help distracts him from realizing how much work he is doing trying to stabilize his core and keep his head up.  The mini push-up position can be held with my support and he will even lift and turn his head when motivated by his spinning light globe.  I think he will intentionally hit things sometimes too.

Feeding: Gideon has a stronger suck than when he was struggling in those early months.  He is eating larger amounts and has started to try solids.  Solids have been a struggle.  His eyes are still healing from the cataract surgery and this means that nothing can get in them due to infection risks- not even water.  Letting him explore his food is not really an option until his eyes heal.  This being said, I have managed to get a few bites into him now and then - mostly really thin textures- but hey, it's a start.

Tolerance:  Gideon has been adjusting better to the outdoors.  The breeze, temperature changes and brightness have become a little more tolerable.  Sometimes it is still too much for him.  Often you can see him physically and emotionally relax once we find our way back inside or out of a certain element.  You can tell that he knows our own house.  He is still struggling with being passed around to other people.  Although his tolerance has increased, it will only last about 5mins or so before he needs me again.       


I hope this gives you insight and encouragement into how well Gideon is doing right now.  He is making progress at his own pace and he needs to be acknowledged for everything that he is accomplishing in the face of his limitations.

Monday 1 June 2015

How Many Club Z Points do I get for Signing Up?

Being a parent to a special needs child is challenging.  Who knew?  Before I had Gideon, I really had no idea what this special club was really going through.  Maybe I was given Gideon so I could relate to others going through similar journeys.  If I knew things were going to be this challenging would I rethink the whole pregnancy?  Maybe for a moment, but in the end I know I wouldn't give up Gideon for the world.

Here are some observations I have made about being in the Special Needs Mom Club:

Emotional Rollorcoasters will Happen:  Finding out your child is going to be "different" while still in a postpartum hormonal state, fighting sleep deprivation and a medical appointment book with little downtime can make it difficult for a parent to keep their mental health in check.   Depression, anxiety, OCD tendencies, burn out, all kinds of strange mannerisms/feelings start to emerge as you question whether you need professional help, have time to seek professional help, or if these quirks are just a figment of your imagination that can be self medicated with coffee.  The truth is that there are good weeks and there are bad weeks, good days and bad days, fleeting moments and long drawn out nightmares that will all blur together as you make your way through the journey.  Finding a healthy way to deal  with this is key!

Embrace your Support Networks:  Depending on your situation, finding and fostering a support network can be challenging.  Turning to other parents can be helpful, but sometimes it is disheartening to see their children develop normally and it can be hard to sympathize with the more "superficial challenges" they are dealing with.  It's not that I don't acknowledge your struggles, I know they are hard for you, it's just that sometimes I would literally give my left leg to be going through your struggles instead of mine.  It's all about perspective.  Support from family members can also be hit or miss depending on your cultural background, family values and dynamics.  I'm fortunate to have a lot of emotional support from my family and they have tried their best to help us out how ever they can.  I have also found support through our church.  They have provided us with emotional support, meals, gift cards, free babysitting and even a load of firewood that helped us get through the cold winter. Finding professional organizations that you or your child can identify with is also a great idea.  These can help you connect with other families going through similar struggles.  Isolation is hard in the best of situations.  When you are going through challenges in your life, it is even more important to open yourself up to others and find people you can relate to.      

Keep your Perspective: This can be one of the most challenging things for me to do.  As my life has become more and more revolved around my son, it has become difficult to give the other things in my life the attention they deserve.  I have to remember that my life shouldn't revolve around Gideon.   I need to spend special time with my other family members and embrace my friendships.  I need to find time for myself.  Life is too short to be constantly on the move, stressed out and "out of control".  I also have to recognize that our situation could be far worse than what it is.  My son is not terminal.  He survived the pregnancy.  I have to acknowledge all the blessings that have come our way.  Keeping things in perspective is essential in keeping my mental health in check and bouncing back from burn out.

Being a parent to any child is challenging, whether they have special needs or not.  How are you facing/dealing with your challenges?    

Tuesday 26 May 2015

I'll take Potent Playtime Potables for $1000, Alex

I've noticed that having a child with visual and hearing impairments along with gross motor motor delays can make playtime difficult. Gideon is almost 9 months old but he can't sit up on his own or crawl.  He is starting to roll and occasionally will get stuck on his tummy like a turtle on his back.   This means that he doesn't have the upper strength for swings, jolly jumpers and exersaucers.  He does a lot of his play on the floor.

For Gideon, I've had to find/make a variety of textual treasures.  I thought I'd share some of the toys he is most interested in right now.

Lights:



RED ROPE LIGHTS- Gideon has really been enjoying a set of red rope lights.  Red is a really easy colour for people with visual impairments to see plus they can be mouthed because a) he has no teeth and b) they do not heat up.




SPINNING LED LIGHT WAND-  This little light is a such a motivator for head movement.  As soon as he sees it, he is engaged and will follow it wherever it goes.  It also vibrates slightly which is a bonus.  I think I picked it up at Walmart but you could probably find one at a dollar store.  





Vibrators:



LEARNING CURVE BUZZING BEE- This is a chew toy that will vibrate when bitten.  It gives a very gentle vibration and massages the gums.  The loops are just large enough for handling and make it easy to grip onto and manipulate.




O BALL WOBBLE BOBBLE - This has got to be the very favorite right now.  This ball vibrates when touched.  The "switch" is very easy to activate and the vibration is so intense that you can feel it across the room.  The "on time" is just right too; Not too long and not to short for feedback.  Gideon just loves it!  It's also super funny to watch him shake.


Handheld:
Button sewed onto a shiny gift wrap bow

Maracas- cha cha cha
Small strainer that is light and easy to manipulate
Gideon enjoys exploring a variety of small handheld toys.  The small toys seem to be easier to manipulate and understand. He seems to prefer the harder items and tends to shy away from soft things like stuffed animals.

OTHER:
Of course I couldn't leave out how much he likes it (on most days LOL) when I kiss and tickle him.  I can't say enough how happy I am that he will tolerate me and actually smile and laugh on occasion when I interact with him.  These moments are priceless.


Wednesday 20 May 2015

Driving my Life Away

Yesterday I left the house at 5:45 am to drive down to London to see our new ENT for an early appointment.  Although I was tired and a little grumpy, the appointment went well.  We now have a surgery booked for next week to insert tubes and take the fluid out of Gideon's ears.  They will also do a hearing test while he is under sedation.  This means that we should be getting the new hearing aids sooner rather than later.-  Good Stuff!!!  I also had an appointment with our eye surgeon to check up on Gideon's post surgery healing.  She thought that Gideon's eyes were looking great.  So far there are no little white specks.  She also gave us the OK to put his contact lenses back in.  I'm still nervous about the cataracts coming back.  I think it was just over a month post surgery when we noticed them coming back last time.  I didn't get home until around 8:00 pm and I was over done and over caffeinated.  What a long day! 

Days like this are hard for everyone.  I saw Alex for all of 5 mins, when I woke him up to sing him a lullaby, kiss him and explain to him that "yes, mommy will always come home".  Being away so much is hard on Alex.  It messes up his routine and makes him act out.  Poor Gideon spent most of his day in his car seat.  How is he suppose to work on his gross motor skills when he is stuck in that seat all day?  Also, it is really difficult to try and feed him solids while we are on the road.  I usually just stick with bottle feeding, which again is not helping us with our current struggle with new food textures.

These road trips are tiring but I have some coping methods for myself.  These include coffee - lots of coffee- and a stack of old CD's from my late teens/early twenties.  Bathroom breaks are also great.  Nothing feels better than emptying a full bladder when you think you might pee yourself... am I right ladies?  To be honest though, sometimes I enjoy the drive.  It lets my mind wander and being in motion somehow calms me.

My coping methods for Gideon though are sadly lacking.  I try to put a couple of toys in his lap and have Vivaldi's Four Season's available on hand.  (Vivaldi is like a light switch.  Full out inconsolable wail turns instantly to quiet soothed listening.)  Although I usually leave the house early so we can made a quick stop or two, I have to keep on trucking to make it to our appointments on time.  This means that pit stops can't last forever and Gideon has to try and console/occupy himself or sleep.

How do you deal with having young children on the road?  Any tips?

Friday 15 May 2015

Let's Talk Vision My Little Blind Bat

Let me open your eyes to the world of vision loss.  (Sorry, couldn't resist the grandpa joke) There are a lot of terms thrown about when talking about vision and how they apply to Gideon can be confusing.  Right now Gideon is considered to have a visual impairment.  This means that Gideon has an eye condition that effects how he sees and it can not be fully corrected with glasses or contact lenses.  He will never have 20/20 vision.  He will always see things differently.

As defined by the World Health Organization -

There are 4 levels of visual function, according to the International Classification of Diseases -10 (Update and Revision 2006):
  • normal vision                       
  • moderate visual impairment   
  • severe visual impairment        
  • blindness                        
The American Optometric Association has this definition:

  • 20/30 to 20/60 is considered mild vision loss, or near-normal vision
  • 20/70 to 20/160 is considered moderate visual impairment, or moderate low vision
  • 20/200 to 20/400 is considered severe visual impairment, or severe low vision
  • 20/500 to 20/1,000 is considered profound visual impairment, or profound low vision
  • less than 20/1,000 is considered near-total visual impairment, or near total blindness
  • no light perception is considered total visual impairment, or total blindness
What does this mean for us?  Well after the last cataract surgery I asked the surgeon what she thought Gideon was seeing right now.  She said he was probably seeing 20/400.... maybe 20/300.  That means that Gideon falls right on the upper limits of "Severe Visual Impairment".  He would not even be able to read the big letter E on the top of the chart.  I'm sure that when the cataracts are in his eyes he would fall into the blindness category of "Profound Visual Impairment".  According to the CNIB, in Canada, legal blindness is "worse than or equal to 20/200".  So that makes Gideon legally blind.  To put this into perspective, you can not drive a car if your vision is less than 20/50.

We are still in the early stages.  The surgeon is only taking a guess at what he's seeing and it is possible that his vision can improve down the road.  Once we confirm that the cataracts are gone for good, we can do some more accurate testing.  So far the eye surgeon thinks Gideon's eyes are healing nicely.  Let's all hope that we remain in the clear- literally!

Wednesday 13 May 2015

Long Awaited Updates

Sorry for the hiatus.  I think I've had a little caregiver burnout and my motivation has dropped off the charts.

So many things have been going on...

My Lumpy Head
1.  I had some cysts removed from my scalp.  Things are healing up nicely and I don't feel so weird about going to a hairdresser.

2.  Gideon had an eye examination under sedation.  The eye doctor again confirmed that his cataracts were coming back and very aggressively.

3. Gideon had cataract surgery for the third time.  The surgeon was going to take out the whole lens but instead opted to cut away more of the lens rim.  There really isn't much left of his lenses but it sounds like there are a lot of risks with taking them completely out.  The precision needed to do this is amazing!  This does mean that the cataracts could potentially come back a fourth time.

The blue portion is my depiction of what the surgeon has cut out.  

So far he has been recovering well.  He hates the eye guards and has been ripping them off his head.  Lately I've not been putting them on him and just trying to bat his hands away from his eyes when he tries to rub them.  I'll post some pre and post surgery pics later.

4. Mother's day has come and gone.  I had a lovely day with my family.  I was adorned with flowers and cards.  I was kissed and hugged with resounding "Happy Mommy's Day".  I was even gifted with a shower and enough time to shave my legs!

This year mother's day had additional meaning to it.  My first mother's day with Alex was very very special but this year I think I felt more philosophical about it.  I was more reflective about motherhood in general and how much this role has defined me as a person.  I though about the struggles/suffering of Motherhood and the feelings a mother goes through when there child fails, is sick, or rebels against you.  I thought about the first mother depicted in history- Eve.  What an amazing joy having a new life come into the world would be.  Then the devastation, the mourning, the mixed feelings of when your beloved child murders another one of your beautiful children.  As a mother, how would you deal with this?

Motherhood is complex.  You invest so much of yourself into your children and you just want to see them soar to such great heights.  You see so much potential in those beautiful little beings and you would do almost anything to help them succeed.  It seems so unfair to lower the expectations of your child when you know that they are different.  With Gideon, I am shooting for the stars.  I've had to mourn the loss of my initial expectations for my beautiful little boy and embrace the charming child that has won my heart.  I did not expect him to have limitations.  (Which is silly if you think about it because we all have out own limitations)   Expectations and limitations are different.  Even though he is considered legally blind at this point, through these limitations I still expect him to soar.  Soar to reach his full potential- and I will be there to help him push through.  As I've been told, Gideon's full potential is still "up in the air" due to his unknown limitations.  But I think that as long as he strives to do the best that he can, that will make me proud - limitations and all.  In fact, perhaps because of his limitations, I can be even more in awe of his accomplishments and his amazing ability to overcome.

Friday 17 April 2015

There's No Place Like Home

Yesterday we got the green flag to leave the hospital and come home.  What a beautiful day it was!  The sun was out and the air was warm.  It felt so good.  Gideon is still throwing up and his intake is half of what it was before he got sick, but at least he's not dehydrated.  I've already got in touch with the dietitian and have a plan moving forward.  Unfortunately Alex is still throwing up - It's been a week now.  My poor little toad is just not himself.  It's really hard to get any food into him.  He's just not interested in it.   Hopefully this nasty bug will work itself out soon.

Thank you to everyone who has been praying and thinking about us.  The support has been amazing.  

Wednesday 15 April 2015

Admitted Again

I brought Gideon to the ER on Saturday because he's been so sick recently and they admitted him.  We are still in the hospital but he seems to be doing better.  I'm really hoping we can get discharged before the weekend.  He seems to be drinking a little more and keeping it down.  More updates to come....

Friday 10 April 2015

Put One Foot in Front of the Other

I've been feeling a little deflated lately.  With Gideon's cataracts returning and a phone call from the geneticist letting us know that BOF syndrome has been officially ruled out, it has been hard to stay positive.  It feels like when I talk to people I'm mostly talking about Gideon and the struggles we have been going through.  I'm struggling with the possibility of giving up my career to stay home with my child to give him the extra attention he will need.  I've had to think about where the best services for my child will be found and if it would be wise to move our family.  I've struggled with finding time for myself and time alone with my husband.  In the midst of this, it  is just so hard to hear God's voice, to find inner peace, to feel confident in my decisions and life direction.

Right now the big picture is too much for me to take in.  I have to learn to find pleasure in the little achievements -Baby steps.

Top Ten Mini Achievements that Should Make me Smile:

1.  I finally have a consult lined up with our new ENT for next month
2. I showered this morning and lost the lingering Gideon puke smell (He's been throwing up a lot lately)
3. Gideon didn't throw up his last bottle and so I still don't smell like his spittle
4.  I washed the dishes this morning and have fresh bottles made in the fridge- which made me realize that I'm running low on formula.  Now I have an excuse to put on make-up, brush my hair and get out of the house.
5.  I climbed the Mount Everest laundry pile and put a load in the machine.  Now I just have to tackle the foothills.      
6. I started organizing all my medical/travel expenses for 2014 taxes- receipts are now sorted and paperclipped accordingly
7. I managed to drink a somewhat hot cup of coffee
8. I can fit into my pants today. (Seriously... stress does no favours when trying to fit into the post baby wardrobe)
9. I scored a beautiful Easter Lily at discount for only 2.99  
10. Last Sunday, Alex brought me a picture he did in Sunday school and excitedly told me the Easter story. It was precious!  I tucked his picture away today so I can bring out again next year.

Did you have any mini achievements that helped you propel through the day?

Friday 3 April 2015

The Cataracts are Coming Back...AGAIN

SIGH....UGGGG....GRRRRR....EXPLICIT... We saw the eye surgeon yesterday and she said the cataracts are coming back again - First time she has ever seen this happen.  We are so frustrated!!!  Seriously, how many times are they going to have to do this surgery before someone finds an underlining reason for why this is happening?  I can't help but think of this song.  For some reason exasperation leads me to throwing up my arms and fostering a strange humor. Maybe it's a sign of lunacy, maybe it's a coping mechanism.  Please enjoy this Fred Penner classic that I  can't seem to get out of my head.



Wednesday 1 April 2015

I'm Picking Up Good Vibrations

Surprise!  Gideon has a hearing aid.

Yesterday I went to London to have Gideon fitted for a hearing aid.  The hearing aid that he is using is a bone conduction hearing aid.  It looks and works a little differently than the hearing aids most people are familiar with.  It is worn using a band attached to a hearing aid that vibrates with sound.  The vibrations travel through his bone/skull allowing him to hear through "bone conduction".  The hearing aid that most people are familiar with uses something called "air conduction".  This is when a hearing aid is placed in the ear and the sound is amplified.  At this point the plan is to have Gideon use the bone conduction aid until he has his surgery to drain the fluid from his ears and to clean out the blocking wax.  The ENT doctor is fairly certain that he will still have hearing loss after the fluid is drained and the wax is removed.  They will do a hearing test on him (called the ABaer test) after the surgery, while he is still sedated, that will monitor his brain waves in response to different sounds.  This will determine if and how much hearing loss he still has.  The plan is then for him to be fitted with the more traditional hearing aids, in both ears.

The hearing aid he has now is not ideal; It only addresses the hearing loss in his left ear and it may be a problem/get in the way when trying to work on his gross motor skills.  At least he is now hearing things though.  So far he has been fairly tolerant and we are just really excited.  

The band does seems to be a little awkward.  It has slipped down a couple of times and Gideon has been "exploring" the new hearing aid.  This hearing aid is worth $4800.  We are very fortunate that there is a loaner program that lets family's try out hearing aids for free- We didn't have to pay a dime!  But... if it does get broken or lost it is a different story.  We do have to pay for the batteries though.  One battery usually lasts 5-7 days depending on how often they are used and how loud his environment is. ( LOL - with Alex around it wouldn't surprise me if we will find ourselves in the 3-4 day range.)  I'm a little nervous that Gideon might mouth it or Alex might run off and play with it or that the dog might get annoyed with the high pitch feedback and try to eat it.  I guess we will just have to be extra careful with the new hearing aid.

When I told John about the hearing aid being attached with a band and that it looked a little weird, he asked me if we could make it look like an 80's sweatband. It got me thinking.  Stay tuned... let's see what a little creativity can do to help Gideon rock the headband look.