Noah's PEG Stomach Tube was removed last Tuesday. He is recovering very very well. He has started eating great again. It has been simply amazing to see how well he has done.
This marks the end of my time as a blogger.
I began to write just before Noah came into our lives and the blog turned into a place where I could honestly share our experience, our heartache and now our joy in the journey of tube feeding.
I'm finding it all hard to believe! But it is true, Noah is an full on oral-eater, demanding his waffles and "bear" cereal, and being almost 3 years old in every way imaginable!
For myself I need to "turn off" this blog, to turn my attention to family, parenting and work in a non-medical framework (which is taking some adjustment but in a positive way).
I thank you all from the depth of my being for sticking with us - when we couldn't talk, when we needed your help and you came to our door or email inbox with encouragement, prayers....to those who literally crawled in my bed when I felt I couldn't go on.......you know who you are..............
I will not forget this experience and your love as long as I live.
Praise God for this gift of healing. We are so grateful.
Saturday, August 11, 2012
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
(lyrics from Never Once by Matt Redman)
Noah himself can sing the lyrics to the song above. Each word is our family testimony of what was often a very dark journey. But God is faithful and was present every step. We are so aware rarely does a special needs child walk away from their challenges. We are so incredibly grateful, humbled and in awe of the healing Noah has experienced.
On June 30 Noah was admitted to the Peter Lougheed Hospital in Calgary. That morning was the last time we tube fed Noah. He was not given anything, including fluids, in his g-tube from that point forward. It was a test of our reliance on God's comfort to see our son struggle to chew, shallow and struggle to understand hunger and respond appropriately. We never doubted our choice but were on our knees praying that this would be Noah's chance to become an eater. We had the support and care of a wonderful Dr. This man, Dr. Stephen Wainer, was the first medical professional to endorse our desire to try a tube wean with Noah. He saw that despite a tough start in life, Noah clearly had the ability to do a wean. We set aside the disapproval of many other Drs. and para-professionals and tried it.
With joy, we have said good bye to using his g-tube for feeding, medications, fluids. With amazement, our son no longer retches. At all. Ever. He doesn't cough. He sleeps all night long and enjoys a nap daily. He is so so happy and cheerful. He has maintained his weight for several weeks. He is learning the art of chewing, flavours, smells and the social elements of eating with others. He still has to gain weight. It will come. He still has to face surgery to remove the tube and deal with the infected granulation tissue on his stoma site (tentatively scheduled for November 6). But there is no looking back.
Noah is an oral eater. It is still a bit hard to believe. Never once did we ever walk alone.
Thank you God for this gracious gift of renewed health for Noah. Thank you to all our supporters who helped us. To our friends and family who checked in, some of you daily, to cheer us on, to listen to us cry, to encourage us when we felt lost. I have stacks of cards from friends who wrote prayers, notes of hope and encouragement. Thanks to those who asked questions and tried to understand tube feeding better. Thank you for praying. Thank you to Noah's little buddies for including him in things even when he wasn't sure how to participate in eating and now for licking many ice cream cones with him!
One of Noah's first "meals" at the Peter Lougheed Hospital - chocolate pudding was a favourite early on!
Eating an ice cream from Grandma while we enjoyed a few hours at the Calgary Zoo. There is a huge joy in watching a little boy lick and lick at an ice cream!
If you are interested in listening to "Never Once" by Matt Redman, here is the link:
Tuesday, February 7, 2012
Oranges, processed cheese, cookies, milk, carrots..this momma is sooo happy to fulfill any of Noah's requests for tastings. If he asks for french fries, I drive to McDonald's and get some. He is doing a great job with biting and spitting out his food. He hardly ever retches with his tastings which tells us he is reducing his oral sensitivities. After a slow start in 2011, Noah has made big advances since the fall. I'm sooooo PROUD OF HIM. He is such a brave boy. I'm so grateful to be on this journey with him.
Esther is sooooo much fun and a true loving spirit! She is so joyful and fun. She would like to catch up with her brother so she has started to crawl her way around the house! She truly completes our family.
December 2011: Disneyworld! Our 4 hours of fun after spending time with the Dykstra family in the Florida Keys. The trip was exhausted yet special. At Disney, Jared and I felt like kids again - I look forward to many more family adventures and a little easier time traveling as the kids get older. Jared and I love to travel and have had many lovely trips together. I hope I can pass the joy of adventure and exploring new places on to our kids!
Okay, so I've been a terrible blogger lately. I write lovely blogs in my head during the days but then I often feel zapped when the kids are resting or the evening comes and I want to get out with friends, exercise, work or simply hang out with Jared!
Physically I was not feeling good for about 3 months. My eczema was out of control. I felt I could get things better and was trying all kinds of stuff. I finally went to the Dr. in January and started some oral steriods and blam - all better within days. I still have a couple weeks left of meds but I feel soooooo much better. Praise God for medical advancements and medication that can help get through minor things in life that can drag you down a bit. Added to that time, Esther was consistently sick with a cold which isn't a big deal but it is a bit draining day to day. She was very unwilling to drink from a bottle throughout that period and after 4 months of struggling we are weaning her to a cup. She isn't a great drinker but loves to eat!! I was encouraged when I saw she was growing out of her clothing and gaining weight. As a first time mom to Noah, I felt so discouraged so often that things I would try for him would fall flat and with Esther it is not nearly so daunting (different circumstances but still).
I've been maturing a lot through my work. It humbles me, it challenges my faith, it energizes me. I'm really grateful to have a creative outlet and be working with a fine staff of folks and many dedicated volunteers. Also, I'm working on weight loss which is not something new for me but over the years I've found the tools that work for me well. It is a slow and steady ride but I'm seeing results which is encouraging. I'm taking an exercise class that makes me do stuff I've never even imagined I could do. It is good to be challenged. I like it. I need it. I'm thankful for it.
Jared is busy busy busy with work. He is feeling good about the work he is doing, is challenged by it and puts in a lot of hours. In all our marriage, I've never seen him up so early in the morning! He continues to be a true parenting partner. There isn't anything he doesn't help with in terms of parenting. He is amazing. He takes care of all the "stuff" with home maintenance, cars etc. He lets me manage the money :-) He lets me be myself. He gives me breaks on the weekend so I can work a bit, enjoy friendships and take care of myself. He encourages me in my goals and never puts his own interests ahead of mine or the children. Selfless. He's really fun to be with and makes marriage a joy. He works as a volunteer in the technical ministry at church and really cares about making things work well there. We are very similar - we don't want to just do "good enough" but do enough that we've done it well.
Noah, Noah, Noah....what an incredible 2 year old. A firey little spirit. A brave little guy who has some hard stuff to deal with each day. Loves a good ol' belly laugh. Loves to run, jump and play. I stand amazed at him daily. Low tone? Not holding him back. Hole through his stomach - no match for this little guy. He continues to impress the therapy team and while the journey to eating/drinking is a daily challenge, it has more joys as food is fun and we try to make it a positive experience. I keep being told by the therapy team that our connection with Noah and his needs is resulting in progress and I am seeing that. I have a great working relationship with all the therapists and give them ideas as they give me some back. I was asked to be a leader in a seminar series on parenting special needs children through the Child Development Centre. I turned this down due to time constraints but it was an encouragement to be asked. Another experience I get to credit to Noah and his presence in our lives.
Noah is drinking from his straw cup every day, and every few days he'll just randomly yell out a food he wants! "Oranges!!!" And mommy comes running! We do a really good play picnic at 4pm daily - this is his best time of day for tastings. We work hard at incorporating food play into our day and while it is tiring to make blended food, pureed food, diet food and regular food (although Jared is the easiest going when it comes to eating so he'll go with whatever I'm making), I know this is only for a time.
We are having fun as a family. We are enjoying life and praising our Maker for the gift of our children.
Take care and happy tube feeding awareness week - check it out on Facebook!
ps. HAPPY BIRTHDAY GRANDPA DYKSTRA!!! We love you and thank God for you.
ps. HAPPY BIRTHDAY GRANDPA DYKSTRA!!! We love you and thank God for you.
**HERE IS A LINK TO A RECENT NEWS STORY ON THE CALGARY PUBLIC LIBRARY - Noah and I were interviewed about library usage - his first TV role!