Normal

The last weeks have felt very normal. That is a refreshing thing to say. It hasn't been particularly easy as all 3 of us have been fighting a nasty virus. For me that means a ton of asthma which has yet to improve. Noah pulled through a tough week last week where he hardly slept, coughed constantly and was a bear of a personality. He is definitely feeling better which is such a blessing.

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.

Hello Pediasure...the week in photos

So I'm feeling tired and a little lazy so this post is just a snapshot of our week - saw the pediatrician who wants to treat Noah for asthma, mostly to rule it out. There is significant family history on my side so it is worth trying. We had a chest x-ray today too to ensure Noah isn't aspirating any liquids. We continue to assume the fundoplication is intact and keeping liquids from harming Noah's esophagus.

The other big change of the week is the introduction of separation anxiety. I've always been so blessed by a kid who goes with anyone, nurseries, etc. Okay, so that might be over for a bit. He cries for "mama" every 5 minutes the last few days. Oh dear...Noah you realize your sibling will be here in May, right? Hopefully it is just a phase. Let's just say he was in sheer terror this morning when I had him put on the table for the x-ray.

Hello cookie monster....he took one tiny bite - way to go, Noah!
We offer Noah a variety of foods at each feed (5-6 times a day)

Sharing a favourite pastime with a favourite person (Oma)

Mom, isn't this like your aerochamber (boo!)
We were hoping our kidlets would have mommy's eye sight and daddy's lungs (and neither of our teeth)....it could still happen!

Trying to make taking asthma medications fun - um, right? He is starting his dose tonight (I was slow getting the prescription filled due to Calgary -35 degree cel. with wind chill).

Neocate/Pediasure mix - as of Thursday, January 13, we are fully on Pediasure.
Huge cost savings and very convenient. Jared asked where I'd like to go on vacation with all the extra cash we'll have :-) I don't think he's serious, though. Sigh.
Things are going well so far and I haven't seen this much poop from him in a long time which is excellent.

6 bolus feeds a day means lots of Thomas the Train, Sesame Street and other shows
Noah is chewing a sippy cup with rice milk in it
But look I am feeding my boy myself, not through a robot (the pump)! A GREAT CHANGE.

The feeding regime - 2 medication doses a day, plus prune nectar, plus water boluses

Weird picture - I've been forgetting to mention this pregnancy much. So, here are my wrist splints for carpel tunnel, my duel wedge pillow for sleep, my gummie vitamins (stop stealing them Jared!) which are the only kind I can stomach and the ever present bowl - yup still puking at 23 weeks. Baby is healthy and that is all that matters :-)

Stay warm out there (that applies to mostly the readers in Alberta!)

Here we go...

Noah and I spent the afternoon at Children's Hospital visiting the Infant Services Team. Today's crew consisted of his Speech Pathologist, Social Worker and Dietitian.

It was a great feed therapy session (even without the Occupational Therapist). Noah crunched on a bunch of different foods, and we think he did a few swallows! Way to go, Noah. He loves the fact that 4 adults are cheering him on with each bite. He also squished a banana but did not want to eat it today. He only does this well at home a few times a week so I'm really glad he is a willing participant at the hospital clinic.

The downer (and only a little because I've learned that Noah tends to rise above the labels he is given except when it comes to feeding) was the speech assessment. Noah is showing a minor speech delay so we may need to shift our focus in session from only food therapy to also include speech therapy training. They will also bring the physio therapist in next session as they believe Noah has some potential delay. He bum scoots but doesn't pull himself up to stand or move around when he is put in a standing position. Again, I'm not going to put too much emphasis on these concerns as there was a time that neurology believed Noah had significant low tone and won't sit on his own. He's certainly proved them wrong! Speaking of, I have to see the neurologist at the end of this month. I think they'll discharge him as a patient but I'll keep you posted.

In terms of diet, that's where I feel overwhelmed. Noah's first 2 feeds of the day were just brutal. He cried, retched and punched the syringe throughout, causing mommy to spill lots. He had a tough night and was extremely tired this morning so perhaps it was the lack of sleep. He also has had some stooling issues which I haven't been able to sort out. The lack of bowel movements is troubling. The problem is he isn't constipated and I wonder if it is related to GI issues. I'm always sweating over his bowels so I'll just keep trying to work on it from the inside with prune nectar and water, which usually works.

Noah is on day 4 of oral (in our case it goes down the tube) Fluonazole to treat a lingering yeast infection. I held off for almost 6 weeks trying to treat with topical creams etc. but I gave in on the weekend and filled the script. Selfish moment: these are the times I wish we had insurance of some kind. Besides the monthly Omeprazole (PPI), he has had a need for some kind of med. almost monthly. We will of course be fine.....it just hit me today because the Social Worker was shocked that FSCD (Family Support for Children with Disabilities) doesn't cover any of the Neocate. I just shook my head and said "you can't win every battle." That being said, please pray that our 6-month contract for limited services be extended. I meet with the social worker next week for an in-home evaluation.

Anyways, the dietitian wants us to stay the course and concentrate Noah's Neocate to 1.0cal and begin mixing in a can of Pediasure daily. Every 2-3 days we'll add less Neocate and more cans of Pediasure. It will likely take about a month to get to the 4 cans of Pediasure daily. I'm still feeling mixed emotions about a milk diet. On the plus side, she was positive about my desire to investigate and research a homemade blenderized diet. While we are not ready to dive head-first into that right now, I've been reading many articles and blogs on the subject. I anticipated push-back from her so I was really encouraged by her willingness to discuss it. Well see what our Dr. says when we chat next.

Noah been a grump (I hear him crying at daddy who is putting him to bed). Noah is so strong. When I go to vent him lying down, he'll wrap his legs around his PEG g-tube and twist until I can't get air out. He fights putting pants like it is torture. Plus he thinks it is hilarious when I get stern with him. He's really funny about certain things. Oh well, we'll cope!

I still need to call the Pediatrician about Noah's coughing. We have appointments everyday this week for either him or I so perhaps it will have to wait a week or so.

So, it is the eve of my 33rd birthday. My life is filled with love, joy and challenge. This year, all I want for my birthday is a full night of sleep - hahahahaha. I like myself a lot more than a year ago. I'm amazed that God heard my pray for help and sent people who understood depression and the prison it feels like. I'm thankful for family and friends who stood by the shell of a woman I was, knowing that Dar would emerge again. I'm grateful now for a sense of understanding when others deal with post-partum. It is totally a separate journey from Noah's. Too often I've had to remind myself and others of that. It wasn't because Noah had health problems that the depression was present. I'm so thankful that God has granted me the return to good mental health (on most days)!