Wednesday, May 26, 2010

Counting Down to surgery...and lessons in depression

The countdown has begun to June 14, the day Noah will be admitted to hospital. The surgery will take place at some point on June 15, likely early in the day. It will take approximately 4 hours.

I haven't written much lately about my own journey with depression. Partly because I still have trouble accepting what "is." But I was reading through some cards today and began to remember some of the things that were said/done/written to me during this journey. I openly share because they helped me to learn how to better care for others who are experiencing difficulty. I continue to be amazed at the love we are experiencing. God has graciously granted me healing and strength. Even though I still require a lot of help and prayer, I know that He is with me in every step I take through the day.

"This is hard. You don't have to make it better for anyone."

"You are an amazing mom to Noah." That was written in a card on a day I felt I have only failed Noah as a mom. It was like a paper hug!

After telling someone how ashamed I felt to have depression, I heard "I've been there too....." Because others shared their journeys with me, I did not feel so alone or embarrassed.

"As I live and breathe, you made it to church - that's awesome!"

"God knew which parents to give Noah to."

"He's such a happy little baby, you must be doing the right things!"

"Look how far you've come." (the first time I took Noah out by myself to a friend's)

After telling someone I had worn the same outfit for days, the reply was "you got up out of bed and put on your work uniform. Good for you!"

My best friend and I made up this statement for me: "Depression, I might have you, but you don't own me!"



I hope these encouraging words resonate for those hurting and feeling alone today. God is always near. He loves to come nearer when we are in pain. That is my testimony of this journey with depression.

Here is a photo gallery from the last week. Drives to the mountains while tube feeding, fun at home and picnics in the park. My hope to have Noah take to a little "lovey" finally worked. You will see him sleeping with his bunny we named "Rabsy" (Dykstra siblings take note). I can't figure out how to turn the little video the right now (any pointers from bloggers?) It is on Noah's 6 month birthday, in the park with his cousins, Oma and Auntie. He loved it!










video

ps. here is a picture that we received from Mom and Dad D. back in February. This is Grandpa's big truck and he has the two grandkids' names painted on the side - too cute!!


Friday, May 21, 2010

Challenge and joy of 6 months

Happy 6 Months, Noah!

Challenge

Noah has been refluxing so often lately.....he hasn't gained any weight for a couple weeks and that's always a hard thing to accept.  Feeding is difficult for many parents, and it is definitely the thing I lose the most sleep over....that and napping!

Joy

This simple word sums up the days and nights with Noah.  Amidst the challenges, we take a look at this smiley, silly guy and just feel so blessed.

Cooking with Mommy


Spikey hair boy



Smiles and sunshine in the morning (compliments of daddy's photography talents!)



video


And now....a little video treat

Wednesday, May 19, 2010

A Little Boy's Life



"HAPPY BOY"


So, a little late this week and I can't seem to load my videos!  This blog will have to be photo-filled fun with our little guy.  We continue to enjoy walking (added a mop pole and now tube-feeding can be on-the-go in the stroller) and doing loads of laundry (aka refluxing and vomiting is as bad as ever).  Please keep the surgery in your prayers....June 15 will be here soon.  Blessings to all!




"Outdoor Boy"



"Ahhhh.....finally the sun has arrived!"



Monday, May 10, 2010

Mother's Day Weekend



Ahhhh.....my first Mother's Day.  Aside from being highly emotional (sorry Jared), this day reminded me again of how I am so totally in love with my Noah.  Speaking of moms, I must say how much I love my mom; she is my inspiration, a source of comfort, acceptance and understanding.  Mom, thank you for always being present in my life, particularly in this journey of parenting and being willing to do whatever you can to help with Noah's special care.  You are fearless for his sake and I am so appreciative.   

You are my mother and my friend,
Which is unusual.
Somehow our characters must blend:
Your wisdom and my will.

I turn, and you are there for me;
I speak, you understand.
I feel cared for, but also free;
You lead but don't command.

I'm blessed that I was born
To someone just like you;
I love you, not just as my mom,
But for what you are and do.

Friday, May 7, 2010

LIKES AND DISLIKES

LIKES:  reading stories

'Tis Friday and the memories of a difficult Thursday are all but forgotten.   Here are Noah and Daddy taking a breather after the FEES and a tube change by reading a new book (thanks Katie!)

DISLIKES:  FEES exam

This was a nasty test.  Brave Noah was a trooper as always and held his own while a scope was sent through his nostril, them accidentally pulling his NG tube and a huge reflux episode.  The test was quite revealing.  It showed that Noah has inflamed vocal chords, throat and esophagus.  He has been struggling with pain associated with his reflux despite the medication he has been receiving.  I'd been praying that God will give us peace and clarity in terms of the fundo.....well, we got His answer, loud and clear! 

Noah needs to be 100% NG feed until the surgery - any food passing through can cause pain and discomfort.  We will continue with some solids, but mainly for keeping it familiar, not for calorie sake. 

Now the countdown begins....June 15 Noah will undergo surgery at Alberta Children's Hospital for a G-tube, Fundo and a Muscle Tissue removal (for neuro testing). 

LIKES:  birthday parties

Thanks to our friend Jasper for turning two.  It was Noah's first time at a birthday party and he had a super duper time!  Thanks to James for one of our few family photos!


LIKES:  sticking out my tongue 





LIKES:  new toys and places to play! 
(thanks Krista and Auntie Julie-Ann)
  

Monday, May 3, 2010

FEES me, please



Happy Monday to all!

This week Tuesday  we begin physical therapy at home with Pediatric Home Care.  We will receive the PT at home until Noah is put under the care of the Infant Team at Alberta Children's Hospital.  The Team will look after his PT, OT, Diet, Feeding Clinic and perhaps Speech Therapy if needed.  In the meanwhile, our Pediatric coordinator is working hard to have services available to us rather than waiting the 5 months it takes to be put under the charge of the Infant group.  We are very fortunate that these services are so readily accessible to us!

This Thursday Noah will be having a Fiberoptic endoscopic evaluation of swallowing (FEES) to asses his swallowing, without X-rays. An ear nose and throat doctor will pass a small scope, attached to a camera, through the nose and into the middle of the throat.  They will look at his throat and vocal chords, and if he is willing to take some liquids or solids, his swallow.  Please pray this that isn't too traumatic for Noah, especially since Jared and I will have to change the tube that night after the procedure.  Another test you ask?  We are all wondering if his swallow is working properly.  We believe it is because Noah had a Upper GI study in December and it was normal at that time.  But, he is a lot older now and worth checking at this point. 

Here are a couple photos from last night - Noah wanted to show off his tube after his bath!



Noah looks like he's thinking: "Watch out world, pretty soon I'm going to feed myself through this thing!"