News

"I like it here, mama!"

Ahhhh, a great kitchen!

Trusty, super helpful Grandma on duty (Grandpa was also amazing!)

Home sweet home

Moving news:

Well thanks to A LOT of help, we have settled into our new home. I was a reluctant mover, only in that I didn't think I could handle the work, but am overjoyed at our new home and the benefits it offers our family. Thank you for all the help, offers of help, prayers and encouragement. Thank you especially to Grandma, Grandpa, Oma and Auntie Julie-Ann who made the whole process manageable with their care and hard work.

Noah did beautifully in the transition process and handled everything like a champ. He is enjoying his version of stair climbing, which consists of us helping up while he "walks" his feet on the stairs. In his true style, he isn't bearing any weight on his legs when he does this. Smiles. Noah has started standing up in the crib which is a great development for him.

We are settled and the coffee pot is ready if you want to come by and take a peek.

Neurology news:

Last week I thought Dr. Sarnat would discharge Noah from neurology; however, he would like to complete one final MRI of Noah's brain to ensure nothing has been missed. We aren't opposed to this but of course it comes with general anesthesia as Noah will need to be still for 1o minutes. It is a "light dose" so hopefully it won't be a big deal for him. It will take approximately 2-3 months to get this appointment so it isn't something we have to think about in the immediate.

The other interesting news is that Noah will definitely remain hypotonic (low muscle tone) for his lifetime. It isn't too big of a deal - he'll need to avoid contact sports and will be prone to dislocation of joints. Good thing he is more of a book/music/tv kind of guy. This is really one of the only "symptoms" Noah has ever been diagnosed with. There are diseases/disorders associated with hypotonia that show feeding challenges.....but after spending time reading through all the possible conditions, nothing really seems to fit Noah.

G-tube news:

Noah will need to go to a skin level button in the next few weeks. There is a pin-hole sized leak in Noah's PEG and according to the G-tube clinic, that means Dr. Wong will change it out to a Mic-key button. We had tried to do this change back in November, but did not do it at that time due to Noah's retching. We had just decided not to pursue changing the tube until something happened, and well, "it" happened. The earliest I could get Noah in to see the surgeon (who removes the PEG) is April 20. The nice part about the mic-key is that we'll be able to do our own changes, approximately every 6-8 months. Our prayer is that Noah will not be too anxious at clinic that day and though I know based on experience he will be very upset, I hope it will be over quickly.

Sweat Chloride Testing news:

Noah is being screened for Cystic Fibrosis on April 6. The test is at least 30 minutes and I'm not looking forward to keeping sweat bands and electrodes attached to Noah for that duration. I'll bring along the trusty DVD player and pray for the best as I'll be on my own with Noah.

Blended Diet news:

This step in changing Noah's diet has taken much longer than I thought. We have our Vitamix, but I'm having a hard time reaching the dietitian. I know that the recipes I've worked up will meeting Noah's needs, I've calculated his water requirements and have purchased the basics to get started. We are starting simple, with already pureed baby foods, and avoiding milk and soy products for now. I haven't been able to find a truly milk free infant cereal so if you know of a brand, please let me know. For now, I'm using enriched, cooked macaroni as a base grain, and will give quinoa and brown rice a try down the road.

So despite not talking to the dietitian, we are starting tomorrow and give it our first try. We are both really nervous, mostly due to the potential of plugging the tube. But sometimes after a retch, Noah brings up some pretty thick stuff, so I'm hoping blenderized won't be any tougher to get done (how's that for a nice image?)

Our recipe for tomorrow is quite simple. We will still give him 2 feeds of pediasure while he transitions. In the other 2 feeds, he'll "eat" cooked macaroni, applesauce, peas, carrots, rice milk, pureed chicken, olive oil and a dose of liquid multivitamin.

I'll let you know next post how it is going.

Baby Dykstra #2 news:

We've been scheduled for a planned c-section on May 10. It is peaceful to know the date and be getting prepared. The baby's room is set up and most importantly, many prayers are being lifted that our 2nd experience as parents would begin with a more "typical" start. Baby is healthy, and mommy just tries to take it one day at a time as sleep is minimal. I'm still nauseous through the day and night and it is draining. But pregnancy is almost over :-) And then we'll be a family of 4. We are ready, eager and excited.

Whew!

Enjoying the moving process (wearing my sweater from Uncle Nathan!)

Auntie, is there anything you can't do?
Noah being a very good boy for a haircut by Julie-Ann (it was just too cold and Noah too sick to venture out to Mrs. Deenie's this month for our cut).

The new do!

In my last blog, things had improved with Noah. Not more than 2 days after that entry, Noah got what appeared to be another stomach bug. It was complicated by some teething which may explain the constant diarrhea but doesn't necessarily explain his inability to take feed. Retch, retch, retch. We were well worn out by the end of the week.

He was a miserable little bear, screaming day and night, had some very difficult behaviour, and would barely sleep. We were concerned about the intensity of his retching and constant diarrhea that we took him off Pediasure for 24 hours and gave him electrolytes only. The strange thing was, he right away stopped retching! That day was really neat for Noah and I. He played so well, I was able to do much more around the house compared to a typical day. He took the electrolytes so quickly.

The next day, I started Noah back on formula, about half his normal volume, and decided to use the plunger to quicken the feeds. He did well and it gave me confidence to continue to feed him quickly since. That is saving us a lot of emotional energy and time in general when we come to a feed. His bowels settled down and for the last 6 nights, he slept through the night (that's a total first for us!), had some decent naps and hasn't woken up coughing. Now, we recognize that he may easily start having difficulties during feeds and sleep, but we certainly have enjoyed the reprieve.

It was during that period that we had a meeting with Dr. Palmer, Noah's Pediatrician. His thoughts were to return Noah to Neocate, double his Losec meds., refer Noah back to GI clinic, refer Noah to a pulmonary team and complete a sweat chloride test (to rule out Cystic Fibrosis).

We totally disagree with our Dr. on returning to feeding Noah Neocate. Noah retched and retched often on Neocate. We tried it for 8 months, both on 24 hour feeds and bolus. So, we decided to start our journey with blending our own food for Noah. The challenge is appeasing the Dr. and dietitian by showing the nutritional information Noah will receive through his blendarized diet. The frustration is that a typical 16 month old diet would not be calculated so precisely. They would eat 3 meals and snacks each day. In any event, I've put together several basic recipes that meet Noah's current caloric daily intake. My goal is to not get too nutty about all the numbers and just remember that Noah will be getting real food each and every day, and hope and pray it will be something he tolerates well. I'm expecting to receive our Vitamix blender this week and while expensive, it comes highly recommended by lots of tubie parents. We don't want to clog or plug Noah's g-tube so we need a very smooth blend.

As for doubling his meds, we are also opting to leave his dose alone for now. We aren't convinced he even needs the Losec, but it is standard to be on it for at least a year after a fundo. We'll continue to give him one daily dose.

Going back to GI clinic probably won't result in any testing for Noah. The last time we attended clinic was in October and at that point they said they couldn't help Noah further. We'll go back and see if they have anything to add to our plan right now.

The final 2 thoughts of the Dr. (pulmonary and sweat chloride) have to do with Noah's coughing. We still have a gut feeling that his coughing is gastric in nature and is related to feeding tolerance. However, since we have ruled out asthma it is the next logical step to engage a pulmonary specialist to investigate further. Same goes for the sweat chloride test. Noah was tested for CF as an infant but this is a more comprehensive test. April 6 is the date of the test and I'm nervous because Noah is not a willing participant when it comes to Dr. visits and tests. I hope he'll be okay.

The journey continues, the questions continue, the search for a diagnosis continues. We have hope that Noah will continue to take feed quickly and tolerate them well. Clearly, he is a very sensitive little guy as the last weeks have shown us. He seems to pick up stomach related things very easily though doesn't have a lot of colds (a relief). We keep working as a team to support Noah's needs. I can't sing Jared's praises enough, he is an incredible father and husband. I am so blessed.

Pregnancy update: still throwing up, still feeling nausea 24/7 (worst at night), not sleeping much - but as Jared says, still smiling :-) It is hard but the countdown to meeting our new baby is coming soon. That keeps me going.

Moving: thank you for all the offers of help! We are doing well with sorting and packing and have hired movers to do the heavy work. We are looking forward to settling into our new home and are praying Noah makes a smooth transition. He doesn't like change very much so we anticipate a few tough nights, but we hope he'll accept his new surroundings.

Talk to you soon, everyone!