Grayson: 16-17 Months

In missing last months post, I'll do double duty this month but try to keep it as brief as possible!  Our computer also took a turn for the worse so for now I'm bound to my iPod photos of the little dude.

At 17 months Grayson:

• Is walking as of 5.31.13, now walking 100% of the time and can walk backwards, go up and down stairs and turn around without any problems.
• Got his 8th tooth on 6.5.13 and is working on #9.
• Started saying: ding dong, diaper, PJs, hello, go (as in "where'd it go?"), bye, back (as in "will you be right back?" when I leave the room or put shoes on), more and milk.
• Has been pointing with a guttural "gmm" sound, wanting to know what everything is called.
• LOVES singing and does so all day long with the sweetest little voice.
• Has started wanting to drop his AM nap on occasion but most of the time still takes both AM and PM naps for 1-2 hours.
• Loves using and eating off of a fork.
• Will now drink from a straw cup for all feedings except his bedtime bottle.
• Started smiling on cue for photos.  Be still my heart.
• Is between 12 and 18 month clothes, still wearing size 4 diapers.
• Is starting to get a little tall for his infant carseat.
• Sleeps consistently with his paci, blankie, and his left hand under his shirt and against his mouth and nose (reminiscent of his many months spent swaddled).
• Likes to throw everything in the trash.
• Loves looking at books by himself and being read to.
• Would spend all day every day outside if I let him.
• Is honestly and seriously the most affectionate, sweet and cuddly little kid I've ever met.  He is a little bundle of everything good about having children and I'm trying to soak in every minute with him at this age.

On the 23rd we had his last Modified Barium Swallow, to test for continuing dysphasia as a result of the damage to his esophagus from allergies.  I was surprised to see that he was still having significant penetration of his airway when using a bottle while sitting, but thankfully he did well swallowing the ultra-thin barium through his straw cup. The speech therapist who has been with us through this was encouraged and is allowing us to continue with unthickened liquids through a slow flow straw cup. Because of this we will begin weaning him from his nighttime bottle, something that I don't think will be difficult on nights when he is feeling well and his normal happy self.  She assured us it was most likely weak muscles that are causing the continued aspiration, not the presence of more unidentified allergies.  We won't know for sure until his next scope in September but that made me hopeful that we are on the road to strengthening those swallowing muscles and not causing any more damage!

Twice I have tried giving Grayson the new Oscar Meyer all natural, all beef hot dogs to expand my options for serving easy protein. However, both times he has developed a bad yeast rash within a few days so those are out and we can add either beef or one of the few other ingredients in those to the list of allergies.

Grayson's Nutrition Update

After our follow-up with the allergist at the end of May, he recommended that Grayson start on a medical food called Elecare Junior, to fill in the gaps in his diet due to all of his allergies.  We started with a few samples and through trial and error found that with 2 scoops of Elecare Junior in each of his four sippies of rice milk a day, he was still able to eat the solid food I put in front of him without showing signs of hunger in between meals and snacks.  I first tried switching from soy formula to almond milk but alas, he was allergic to that as well!  We were also advised to see a nutritionist once we eliminated the allergens from his diet to review what he was actually eating, make any necessary adjustments, as well as determine the amount of Elecare that was appropriate for his weight and growth.

Before 7am this morning, the kids and I packed up and trekked into the city (via Dunkin Donuts) to Phoenix Children's Hospital for an appointment with a nutritionist.  I am so grateful that PCH is such a kid-friendly place and both kids made it through the morning happily.

Our nutritionist was fantastic and gave us the first real positive feedback since all of this began.  We have been doing something right!  Hallelujah!

Here is a list of what Grayson is eating and his allergies to date:

Allergies
Corn*
Milk
Soy
Wheat
Almond (avoiding all nuts)
Avocado
Peaches
Shellfish

*This was the strongest reaction by far to the patch test, it took about 4 weeks for the scar from the reaction site to disappear.   I can only assume it would take that long for his esophagus to heal as well after eliminating these allergens.

Foods
30-40 ounces Rice Milk daily with 2 scoops of vanilla Elecare Junior in each of 4 cups/bottles

Lentils
Chicken
Eggs (cooked with coconut oil)
Salmon

Strawberries
Blueberries
Bananas
Apples
Applesauce
Grapes

Pureed veggies if mixed with fruit
Peas
Carrots

Van's Honey Nut Crunch cereal (oat, brown rice, millet, quinoa and amaranth flours)
Baby Mum-Mum Organic Rice Rusks
Raisins

With the exception of wanting us to add some more (in quantity) grains to his diet, the nutritionist was very pleased both with his diet and his weight gain.  He was right around 22 lbs and 31 inches at the visit today.  She advised us to continue with 8 scoops of Elecare Junior a day to supplement fats and nutrients that he is lacking and we will see her again in 1-2 months to monitor his growth and progress.

On the 23rd of July we have a follow-up MBS test to make sure that his dysphasia has also been eliminated but I am pretty confident it has.

We will be doing a second endoscopy in September, two full months after the elimination of all known allergens, before we attempt to add anything new into his diet.

With the addition of Prevacid and Flovent and the elimination of these known allergens,  Grayson is showing a lot of improvement, even in ways I wouldn't have expected.  After this last month of dramatically reducing his allergen intake, he has gone from refusing to preferring a straw cup over his bottle, eating more per meal and more consistent intake, no longer waking and crying at night (I assume this was because of acid reflux pain though I didn't think much of it before since he usually settled himself within a minute or two), crawling to walking literally overnight, and gaining weight at a more healthy rate.

We are SO grateful that this happy boy is feeling so much better!  Even though his diet is simple and limited at this point, it is such a relief to know he is getting what he needs and making good steady progress toward health and 'normalcy'.  Praise God!