Tuesday, March 22, 2011


"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.


  1. The organic oat and rice cereal, presidents choice brand from Superstore is dairy free. Just stay away from the mixed ones and you should be fine. Good luck!

  2. oh, thanks so much Amanda! I knew a mom would be able to help out. I'll look for that this week. Appreciate your time!

  3. Darlene & Jared,

    I am daddy to Catherine who has Kleefstra syndrome and I noticed from your blog that Noah has many of the facial features and symptoms eg reflux, feeding difficulties, hypotonia, developmental delay etc of the syndrome. If you'd like to compare notes feel free to email me at
    Take care,