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.