We bought a new home and sold our current house in a matter of a week. That's a normal thing to do. Noah is completely off night feeds. Well, that's like most 14 month olds. Normal. I found a wonderful young lady to help me in May and June when the new baby arrives. Normal. Noah sits in his high chair for every feed. Normal. He watches tv and plays with food. Semi-normal :-) He is very vocal and demanding. That's normal, right? He is taking one nap everyday, going to sleep each time. It depends on his coughing when he'll wake up, anywhere from 20 minutes to 2.5 hours. As my pregnancy progresses, I'm enjoying this quiet time in the afternoon. I know it will be short lived with the arrival of a newborn. So I'm savoring the quiet.
Noah's trial with asthma meds seems to have little results - that's a good thing! We'll keep trying the mild steroid 2x a day and report back to his Ped. in a few weeks. We'll see what comes after that.
We have moved to allowing Noah to lead more and more in his oral experiences. I've allowed myself to accept a very dirty kitchen floor, throwing food away, vacuuming daily, and letting Noah smear food all over himself and his surroundings. He has responded. He now will take a bite or two off spoons - especially things like thicker yogurt. My plan this week is to buy a new batch of food that Noah has never tried and offer them to him. My motto is "wait, watch, wonder" which comes from Dr. Marguerite Dunitz-Scheer, deputy head of the psychosomatic division at the University Children's Hospital Graz, Austria. I hope to share more about her philosophies in the future. She is a specialist in rapid weaning and it has ALWAYS been my default website to visit when I think about Noah's future with eating. Anyways, here is the link: https://www.notube.at/
That being said, today with the help of our OT, PT, SP and Dietitian, we've decided to stay the course with Noah for the time being. He is taking his Pediasure feeds very well. His retching is still difficult and frequent, but it certainly isn't worse. That's huge!
With moving in 6 weeks and baby in May, there are a lot of transitions for Noah coming up. I am feeling strongly about reducing tube feeds in the next 6 months but I know that timing is huge. Our team recognizes that Jared and I do not feel a slow reduction in feeds will work for Noah. We've tried it last March and Noah began to reject the bottle even though his feeds were reduced for over a week. Now that he is off the night feeds, he has 12-14 hours off feed and he is absolutely not interested in eating or drinking in the morning. That isn't enough of a gap to develop his hunger. My thinking is perhaps we can see how Noah is doing with his weight in August and following. Praise God that Noah is growing really well and is 22 pounds. I share that with the hopes that no one will compare other kids' weights to his. That has been really frustrating in the past, especially since Noah's unique needs are not the same as a typical eater. Noah is responding to his diet and that is all that matters!
Noah loves to watch the cars and trucks drive by the window in his room - he'll miss that in his new house which is on a quiet street! He doesn't pull himself up to stand but we have many practice exercises and activities from our PT to help encourage him to kneel and stand more independently. She thinks it will take some tough love to happen as he isn't an eager participate when he is being pushed to try new things. We'll persevere and keep encouraging him to get off him bum (even though the bum scooting is darn cute!)
Minigo! Our new "favourite food" - he loves to play with the gooey stuff and make a big mess! We have been told time and time that our respectful approach to Noah's cues is paying off. The gains are hard to measure, but there is change. It isn't a battle zone, it is simply food and positive experiences with playing. My goals with each tube feed and oral experience is to wait, watch and wonder at what Noah might do! Now when he finds a piece of something on the floor he'll give it a try. Noah's "trying" sometimes is as simple as putting it to his outer cheek and pretending to chew. It is adorable. But he is happy around food. I feel blessed to be a part of his journey.
Feeding the monkey (aim is a bit off)
So, we keep on truckin' and now add packing up our house to the list!
Take care of yourself.
Just a note: Tube Feeding Awareness Week is February 6-12. There is a facebook page you can check out (search Feeding Tube Awareness) or check out the following website. I've outlined some of the information that is being shared to try and build knowledge and acceptance of tube feeding. We are so thankful that we have this technology to keep our son Noah alive, growing and developing as well as he is!
Information found from the Tube Feeding Awareness Website:
The general public is not likely to associate tube feeding with infants and children. Moreover, they are not likely to think of children who often look otherwise healthy as having a need for tube feeding. Given the rarity of tube feeding, conditions our children have and the human interest aspect of families who go through great lengths to keep their children healthy, our children can be of interest.
- The overall objective of Feeding Tube Awareness Week is to help raise awareness of enteral feeding as a positive and often life saving medical intervention for those who are unable to eat and drink enough on their own to sustain life, grown and thrive.
-Moreover, we hope to break down the social stigma that is currently attached to tube feeding by:
*Highlighting the positive outcomes associated with tube feeding
* Giving more information about the reasons that children require tube feeding
* Countering stereotypes and misinformation about tube feeding
* Feeding Tube Awareness is a group of parents of infants and children who are tube fed. The mission is to share parent knowledge of day-to-day life of tube feeding that medical professionals are often unable to provide.
Some Information about Tube Feeding:
* There are myriad medical conditions which impair an infant or child’s ability to eat or drink enough to sustain life, grow and thrive.
* Tube feeding allows infants and children to maintain nutrition and hydration while they:
o Grow out of their condition
o Grow stronger for medical procedures
o Battle their disease
o Find safe foods to eat
o Learn that food doesn’t have to hurt them
o Learn how to swallow/eat safely
* Parents of tube fed children are often thought of as not trying hard enough to feed their children, when often we have tried everything.
* The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate making it even harder on parents.
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