Planes, trains and automobiles

Hello!

Its been a busy month! I've managed two trips, one to Invermere by car (thank you Terri and Jen) and Abbotsford by plane (thank you Susan, Jeff, E, Princess A, little a, Pam, Nolan, L and L). As a family we were able to drive to Mara Lake (thank you James, Shannon, J and S). It was so nice to see Noah easily adjust to different places and sleep situation. He did really well and only encountered a few tube related challenges.

Lately, Noah is having a blast learning to use his arms to pull himself around. He has no interest being on his tummy so he simply pulls himself to the nearest fun looking item. Usually, it is his suitcase :-)

In this picture he is working his way around his room, trying to avoid the carpet as it slows his movement down.

This is the proud moment of opening his clothing drawer - oh look, its the little suit he is going to wear to his Auntie Anika's wedding in a few weeks. That is our next travel, the biggest yet. Thankfully, Oma is going to fly on the plane with us to Toronto and help us out for a few days so Jared and I can support Anika and Andrew and enjoy the wedding celebrations! We will also have the delight of finally meeting our niece. I cannot wait.


This picture was taken just before he took out all of mommy's pots and pans....Noah, you are strong!!


Here is our favourite activity. Lately Noah has taken to drinking a bit of water from a Tupperware container while enjoying his bath time. It is really encouraging. He is also willing, from time to time, to bit a cookie or two. Even though he'll often spit out the contents of what is in his mouth, it really gives us hope that his aversion is not getting worse! I think his 7 teeth are helping us progress in trying different textures.



As for tube feeds, I am SOOOOO HAPPY to report that bolus is going well. We need 4 hours in the daytime to get in Noah's feeds, so he is actually off his pump for a few hours a day. He is and will continue to be feed for 13 hours at a low rate overnight. It is so nice to see him able to move around without his tube dangling behind him. We will keep working at slowly increasing the rate in the hopes of doing 4, 45 minute feeds during the day. Retching continues and is quite intense when it happens, but the frequency somehow seems manageable.


And now, a small taste of our travels. Here is L showing off her stickers. Unfortunately, I did not remember our camera and so I've had to beg for a few off Pam's camera. Hopefully I'll have a few more pictures to balance out the story - I had 2 host families!



Noah loved hanging out with new friends, trying out new toys and generally smiling his way into the homes of my dear friends. He and L were busy getting to know each other in this picture. Noah would hang on to the edge of the rocker and pat the baby's hand. Now, if girl L from above got in his way, well, he wasn't as kind and would pull her hair - oops.

His new favorite activity - sitting in a soft chair and sliding out......repeat cycle! Thanks L for sharing your chair with Noah. Plus, it is Thomas so my title of the blog actually has some connection. I know, weak :-)


Take care!!

Tube Travels

We were able to take Noah to Mara Lake this past weekend. Thanks to our friends, the "D" Family for the invitation and being such excellent hosts. We were very well cared for. Noah was a great little car traveler, even sleeping for a few hours, all the while he was feeding through his g-tube! It was a really special time for our little family.

I thought I should give a quick update on life right now.

Tube Feeds

We believe Noah is feeling better on Neocate formula and from being fed a small amount each hour around the clock (continuous feeds). He went from retching 30-40 times a day to between 10-12. A HUGE ANSWER TO PRAYER!!!! We are now working on building a bolus feed where Noah would take a feed in one hour, and have one hour off. The exception is night time where he will continue (for a LOONNNGG time to come) to take a continuous feed each hour through the night.

We have been working towards a bolus for 2 weeks now and have managed to raise his rate by 30 ml an hour. That means in another 20 mls, Noah will be taking a one hour feed. This is by no means less work for us, however, so once the one hour on, one hour off is established, we will push on to try for 3 hour feeds. Hopefully within another 2 weeks we will be at hour on, hour off.

We will see the GI Dr. in October and that may just be the final step in Noah's medical investigations. Why he couldn't and then wouldn't eat might may always be a mystery, aside from his severe reflux. Noah's genetic, metabolic and neurological tests are clear. Somedays, the hardest part of caring for his medical needs is not really knowing what the underlining issue might be. So we accept what is, what a fine fellow our Noah is, and enjoy our days to the best of our ability.

Oral Feeds

Noah has had quite the menu offerings lately with french fries topping the list! He is a very social guy, enjoying sitting in his high chair, playing with his food, feeding mom and dad and showing off at feed clinic with his OT. The only part he isn't so excited about is.....well, actually eating and drinking or putting food in his mouth. We aren't surprised by this and continue to keep our long term (read: years) plans in mind with each meal. First, keep food times positive and fun. Second, Noah makes the choices about when/what/how he will eat. Third, keep offering him food, throwing it away without guilt and trying again at the next meal.

Sleep

Noah has a mixed bag of night sleeps. He is whimpering much less (ANOTHER HUGE ANSWER TO PRAYER) so when he is up it is usually for a short period of time. I was up 4 times last night with retching or crying. We definitely feel like we are out of survival mode with sleep and are able to get a few good hours in a row which is very refreshing. We've had a few incidents of the tube opening during the night which makes for a smelly bed and baby, but we are learning how to avoid this with loads of tape. It stills make us nervous to have a chord hanging over the crib rail attached to our son, but we trust that the stiffener sticks we are provided with from Home Nutrition will keep him safe each night.

Grace

Tube feeding has become our normal. We modify the regular baby "stuff" so that it works for Noah. We manage the extra stress and costs involved in Noah's care. We are more than just existing and instead trying to find ways to care for others in similar circumstances. I (Dar) am completely medication free. Many prayers have been answered. Thanks be to God.

Our sincere thanks for taking the time to read our blog, write notes of encouragements, have playdates, ask questions about Noah's feeding, email a comment....it really makes such a difference in managing the day-to-day. Blessings.

Here are a few pictures from our weekend travels:

Practicing drinking from a cap with mommy!

Trying out some boating

Bluey (our suitcase) goes just about anywhere

Just before Noah fell asleep on the boat ride

On the shores of Mara Lake