This morning when Jamie signed “more” (asking me to get more blocks out of the bin), I told him “say it with your mouth.” And he did! It sounded quite a bit like his versions of “moo” and “meow,” but he’s not even 20 months, I’m not being too picky about diction right now. So I guess that’s his newest word: more.
He visited his gastroenterologist, Dr. Whitney, today. She was pleased with his progress and told us that it’s definitely time to cut out the night feedings. Dr. W feels that he’s waking up entirely out of habit now, not because he’s truly hungry. Between solid food, soy formula, and his vitamins, he’ll get plenty of nutrients during the daylight hours, and will also begin to increase his caloric intake. I couldn’t help myself, I began laughing and said to Jamie, “Sorry, buddy, Dr. Whitney is no longer on your side!” Doc and I are going to come up with our plan of action for tackling this tough task this weekend. I’m not looking forward to The Big Wean, but maybe it’ll be less traumatic (for all of us) than I fear.
Jamieson’s eyeteeth (canines) have started coming in. He had a very difficult time getting to sleep last night, and a tough time staying asleep. We gave him Tylenol and ibuprofen throughout the night, but it didn’t seem to help much. I looked this morning and his top right canine is almost poked through the surface. Hopefully it won’t be too much longer. He’s definitely getting better at handling the emerging of his teeth.
Jamie saw his allergist yesterday, and Doc said it was a great visit.
First and foremost, our child weighs 33 pounds now. 33! That’s like 1/4 of what I weigh!! (In my dreams)
But — he is by no means fat. I mean, look at him. He’s a very slender little boy, and the doctor said he’s actually on the lean side of normal for his height. I tell you, though, lifting and carrying 33 pounds around all the time is wreaking havoc on my back and shoulders. I try my best to keep good posture but it’s not easy. I’d let him walk more when we’re out in public, but he’s still young enough that he’s very prone to just take off without a backwards glance.
Anyway, he’s doing very well on his new medication (Flovent, an inhaled asthma medication that he actually swallows rather than inhales). He feels pretty good most of the time these days, and he’s sleeping VERY well. It also could be partly his growing maturity that he’s better able to deal with it when he doesn’t feel well. We’re keeping him on this medication for another three months — but at half the previous dosage — and will then evaluate whether to try taking him off of it.
Also at the end of three months, we are going to try giving him chicken. The allergist felt that this was probably a good way to start reintroducing his suspected allergens. Chicken is probably the least potent of them; peanuts are probably the most potent. We likely won’t try peanuts until he is at least 5.
And we’ll continue the night feedings for a while, probably.
His current favorite Jamie-language word: dippa-deeeeee.
We’re transitioning him now from bottles to sippy cups during the day. He’s not drinking as much milk from them as he will from a bottle, but the goal is to get him used to the idea that milk is only available by sippy cup now. Hopefully he’ll up his intake at some point soon. He has taken juice and water from a sippy for months now, but he only wanted milk if it was in a bottle. And overnight, of course, he drinks from a bottle. We also plan to wean him from night feedings soon. THAT will not be fun.
It turns out that he really digs V8. Go figure! So we get the low sodium kind and he drinks it from a sippy or a straw or even from a big boy cup with assistance. I can’t think of a downside to him liking tomato vegetable juice. We also get the V8 or Motts brand fruit/veg juice blends — they taste like regular fruit juice and I’d much rather he drink that and get those extra nutrients than just drink plain apple juice.
Jamie can now say and sign many words. Spoken words include:
Mama
Daddy
Ham
Hi
Baby
Nine
No
Papa
Yeah
Hi-ya! (Karate style)
Uh-oh
Sign language words include:
More
Eat
Cookie
Drink
Help
Hurt
Please
Thank you
Hi
Bye
Friend
Stop
Go
He’s signed a couple of two-word phrases so far: “stop story” (he was tired and wanted to go to bed) and “more please” (asking for more jello).
He also can recognize many letters and numbers and point to them when asked. I would say he now knows at least 70% of them. I think that’s pretty unusual for a 1-1/2 year old.
Doc and I have realized lately that we are starting to forget things. We are starting to forget how bad it used to be when Jamie was small, how difficult and impossible it seemed. Not that we want to dwell on the negatives about the past, but we think it’s important for us to remember how hard we worked to get where we are, and that we should be quite proud of ourselves for everything we have accomplished.
So a few things that we want to remember are:
Jamie never used to be able to sleep lying down flat. For the first several months of his life we had to pretty much hold him upright at all times, even while he slept. At night, we put him in a co-sleeper on my side of the bed and he would wake up literally every two to five minutes and need soothing. I timed it.
Doc spent a ton of time with Jamie downstairs while I tried to get a little sleep in the bedroom upstairs. We had the pack & play set up next to the sofa and he’d sleep in that — or try to. Doc would sit on the sofa and work or read or watch television, with Jamie right next to him so he could be available within microseconds if Jamie began to cry. Eventually we jacked one end of the pack and play up on blocks so that Jamie would be lying at an angle instead of flat. We thought that might help his tummy problems.
We kept him wrapped a LOT of the time. He had to be swaddled while he slept or his arms and legs would jerk involuntarily and wake him up. His startle reflex was strong and lasted a long long time. He also was growing so quickly in size and strength that towards the end of his swaddling tenure, he would constantly break free of it. We called him Baby Houdini. During the day, Doc would often keep him wrapped to his body in the Moby wrap. It seemed to sometimes soothe and calm him.
Jamie wanted to eat every 2 to 3 hours, all the way up until the time I stopped breastfeeding at 5 months and then even well beyond that. When he was going through growth spurts or just feeling particularly bad on any given day, he’d want to eat every 1-1/2 hours. Breastfeeding would take at least 30 minutes, sometimes nearly an hour. So he would finish eating and then be ready to eat again in an hour or less. It was exhausting. After I went back to work, bottlefeeding during the day didn’t take quite as long per session but it was still very tiring for Doc.
I hated pumping. Hated, hated, hated that damned pump. But I was determined to give Jamie as much of my milk as possible so I did it anyways. Twice a day at work and then as often as I could manage at home between feedings, to build up our frozen supply. At work I pumped in an unused office on the other side of the building. The roof of the attached section of the next building was right outside the window, so I usually had a nice view of birds and squirrels messing around on the roof. Once I realized that some workmen had climbed up there to do roof repairs, literally six feet from where I was sitting with a pump strapped to my torso. Luckily I think the window screening didn’t allow them to see in. I hope so, anyways.
At some point we bought the side-to-side swing. It was like a small bit of magic; Jamie actually could sleep in it for up to an hour at a time. The side to side motion soothed him. We swaddled him, strapped him into it as best we could, then laid a blanket over him and used art clamps to clamp it tightly to the sides of the swing.
We spent inordinate amounts of time playing white noise at Jamie. We bought numerous apps for our iPhones that could combine ocean waves and heartbeat sounds. We played the noise fairly loud and it would often flip some sort of switch in his brain after a few minutes and calm him down and let him go to sleep. It’s the equivalent of loud shushing. It would still take a good 15 minutes of white noise to get him to fall asleep.
When he started napping and then sleeping at night in his crib, in order to get him to sleep we would have to hold him either in cradle hold or monkey hold and bounce up and down on a giant exercise ball. These sessions usually took from 30 minutes to an hour and a half before he’d fall asleep. Gentle bouncing didn’t work most of the time; we really had to hop pretty vigorously. It was hard to hold a screaming crying wiggly baby in pain tightly enough that the bouncing wouldn’t actually jostle him. But we did it, day in, day out, 5-6 sessions per day, for more than a year.
At 18-1/2 months, Jamieson still does not sleep through the night. He never has, not even once. The longest stretch of sleep he’s gone for was seven hours, and that happened only once. So we, his parents, don’t ever get an unbroken night’s sleep unless we have family in town who pitch in to help us overnight.
Now there are about a zillion wonderful and amazing things about Jamie and about being a parent that makes this all worth it. But I don’t ever want to forget how hard it was, and how proud I am of all of us for getting through it with our sanity intact (mostly anyway).
Oops and OMG. I have had this written for like 2-1/2 months now and it’s been sitting patiently in my drafts folder, waiting for me to notice it and post it!!
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Joel and Valerie’s son, Alec Ian, was born on February 24. He’s adorable! He weighed 8 pounds 2 ounces at birth, which was a complete shock to everyone, especially tiny petite Valerie. I think they were expecting a baby in the 6 pound range! We visited them a couple of weeks ago. It’s amazing how tiny they are when they’re that young! It seemed like Jamie was never that small. Of course he was, for a week or so. Alec was very quiet and sweet, and now he is the proud owner of Jamie’s old side-to-side swing. I’m so excited for him to get a little older and be able to play with Jamie.
We have struggled throughout the month to get Jamie to eat more than a few bites at a time. He’s mostly seemed uninterested in food. Until now! The last five days or so (knock on wood) his appetite has picked up. Not so much at breakfast, but better at lunch and by dinnertime he seems really hungry. He’s eating turkey, hot dogs, beans, peas, corn, carrots, applesauce, strawberries, banana, fruit rollups. And of course, his crunchy corn and rice snacks. I’m super pleased that he’s accepting food off of a spoon or fork again. For a few weeks he refused being spoon-fed, which pretty much eliminated veggie or fruit purees from his diet.
He still wakes up twice a night wanting a bottle, and he still gets pediatric soy drink at those times. We have switched his daytime formula from Nutramigen to a soy-based toddler formula. During the day, he’s drinking from a sippy cup almost 100% of the time instead of a bottle, and he’s quickly learning to handle a regular cup without spilling.
Tonight I may try cooking rice or corn/quinoa pasta and see if he’ll eat it.
Overall, he seems to be feeling a lot better, but definitely not 100%. He’s had some bad nights this past month where he wakes 5-6 times per night, crying. Certainly not every night, but enough to make us think that there’s still something going on with his digestive system. His allergist wants to put him on medication. We want to talk to his gastroenterologist before we go that route.
We got Jamie a professional haircut in late February. He had a lot of longer hair up on top, and curly flyaways on the sides. Baby haircuts aren’t particularly cheap, so I closely watched the stylist’s moves so I can try to do it myself next time. Jamie was extremely cooperative, and looks very cute with trimmed hair.
Sickness has been tearing through our house in rounds. I caught a cold in late February, which I passed on to Jamie. He then managed to catch another cold that turned into croup in mid-March. Doc developed a bad cough at the same time (adult croup?), and then as soon as they both seemed better, I got a sore throat and stuffy head. A few days later, Doc got a sore throat and stuffy head. At the moment, we all seem relatively healthy, but clearly we are a family that shares germs amongst ourselves freely!
In early March we drove to Wichita for a few days. Doc’s great-aunt Patty had died after years of illness, and we wanted to see the family and attend the funeral. Jamie was, of course, too fidgety to sit through the service so he and I played outside the funeral home for the duration. At the reception afterwards, he had a good time chasing the ducks around the pond. It was great to see the aunts and uncles, some of the cousins, and of course Grandma Kerry. And later we went with Grandma Kerry to the Sedgwick County Zoo, where Jamie got to pet some sheep and goats at the petting zoo. Those goats were damned aggressive; if they saw you putting change in the goat-food dispenser, they immediately had you surrounded, loudly bleating and pawing at you with their dirty little cloven hooves. In the big cat area, one of the lions was relaxing right up against the plexiglass wall, and he had eyes only for Jamie. Check out the video below. It was kind of unnerving.
It turns out that Jamie likes brooms. It’s tough to sweep the kitchen or the deck because he’s right there, wanting to “help.” Doc got him his own child-sized broom and dustpan, as well as a small toilet plunger (another fascination, LOL). He’ll pick up the deck broom and the outdoor broom and carry them around forever. It’s cute! And he also likes to take rags or paper towels and pretend to wipe surfaces. We think he might be practicing for a future career in the janitorial arts.
In mid-March, we had a weekend where it was 72 degrees on both Friday and Monday, but on Saturday and Sunday we had six inches of snow on the ground. Just when I think that Texas weather can’t surprise me anymore, it does. We’ve had more snow this winter than we have had in, well, ever.
Jamie can now point to many of his body parts when asked, including one we did not specifically teach him. Can you guess which one? Hint: It starts with a W and ends with an IENER. In addition to that one very important part, he knows his eyes, ears, nose, tongue, teeth, mouth, belly, toes, hands, and feet. We’re trying to teach him knees and bottom. And the proper words for everything (no “wee wee” or “bobo”).
And his vocabulary is expanding. In addition to “mama”, “daddy”, “ham”, and ”hi”, he now can say “up”, “yeah”, “diaper”, and (new this morning!) “nine.” He still doesn’t really use the words in context of his own accord, but we can ask him to say them and he will.
Doc has discovered a way to get Lord Imperial Toddler to eat a balanced meal. He calls his trick “Baby Shepherd’s Pie.”
Take some meat — ham, turkey, or a hot dog. Mince finely. Take some peas (or green beans) and carrots. Mince very finely. Mix this together in a baby serving bowl and heat until warm. Take warm mashed potatoes (made with margarine). Spread over the meat/veg mixture.
Voila! Something our toddler will eat!! It tastes like meat and potatoes, which he likes, and the vegetables are chopped too small for him to notice they are there!
Another meal that I discovered he likes is Japanese rice noodles, cooked till very soft and chopped into 1/4″ lengths, drizzled with lemon olive oil and salt. Mix this with finely minced vegetables and meat.
We had additional allergy testing done on Jamie in late February. The allergist did “patch testing,” where they taped little samples of suspect foods to Jamie’s back, covered in bandages and medical tape. They had to stay on for 48 hours, which wasn’t as easy as it sounds. I think the samples itched, and so did the medical tape. And they covered pretty much his entire back. Poor little guy did really well, despite being pretty uncomfortable for two days (and stinky! he couldn’t bathe while the patches were on).
The patches got applied on a Monday, and came off on Wednesday. He had a re-check appointment on Thursday. And the results?
Jamieson is officially allergic to:
Milk
Eggs
Wheat
… which we already knew about from the earlier scratch testing, and:
Chicken
Peanuts
and possibly other foods that weren’t tested
Any one of those allergies on their own would be difficult enough to deal with, but all five of them was a real punch in the gut. I think that the wheat allergy is going to be the hardest to manage. Wheat is in EVERYTHING.
It’s possible that he’ll grow out of some or all of these allergies. Most kids, do, apparently.
The struggle we’re having now is that he isn’t really interested in eating solid foods, period — or drinking much formula. We feel lucky if we can get him to eat more than a few bites at mealtime or snacktime. I think he’s just too busy learning and playing to want to stop and eat. He seems to be growing regardless, though, so I’m trying to be very zen about it and not worry too much. He’s getting a huge percentage of his calories in the middle of the night right now, which I am also trying not to stress out about.
The things that he seems to consistently be OK with eating are hot dogs, turkey, and ham. Right now he loves fresh strawberries, as well. He won’t eat bananas anymore. Vegetables are pretty much out; Doc discovered a sneaky technique that takes advantage of Jamie’s newfound interest in feeding himself with a fork. If you sandwich a piece of hotdog between two small pieces of cooked carrot, he’ll usually spit only ONE of the carrots out. He’ll eat french fries or roasted potato chunks most of the time. And we have a plethora of wheat-free crunchy snacks that he seems to like: Barbara’s Morning O’s (like Cheerios), Corn Chex, Pirate Booty (veggie flavored), and dried fruit.
He still drinks 50%-thicker Nutramigen formula, but we have begun feeding him Bright Beginnings Pediatric Soy drink when he wakes up in the night — it’s like Boost or Ensure for toddlers, and soy based. It’s a lot cheaper than his formula, and he doesn’t notice at night that it’s different. He generally resists the soy drink during the day, but we are slowly attempting to transition him completely away from Nutramigen since it’s really for babies, not toddlers.
He still generally wakes twice per night, but it’s usually very easy to get him back to sleep. This is a HUGE change, and one I am immensely grateful for. Broken sleep is still not easy for me to handle, but I can maintain our current easier schedule for a long while if I need to.
Not food-allergy-related: He now has four words that he consistently uses! He’s had daddy/dada and mama down for a while now. Tuesday night he started saying “ham” — how cute! And yesterday he added “hi” to his repertoire.
January was a month of discovery for us in regards to Jamie’s health issues.
The endoscopy and colonoscopy in early January revealed eosiniphils in his esophagus, a type of cell that indicates the presence of allergic reactions. Oddly, there was no inflammation in either his colon or his esophagus. The extent of the eosinophils puts him right on the border between reflux and eosinophilic esophagitis, which is much more serious.
He is now taking Prevacid daily to control the reflux. This is the same medication that he was on when he was 2 months old. We didn’t think it really did much to help back then, but of course he had undiagnosed food allergies in addition to colic, so any improvement due to the medication was probably being masked by his other problems. This time around, it seems to be helping a great deal.
Next, we went to see an allergist. She talked to us extensively about his symptoms, then performed a skin scratch test (which was SO much fun, let me tell you — try keeping a naked unhappy toddler lying still on his stomach for 20 minutes so he doesn’t disturb the itchy itchy allergens on his back). The results, which have up to a 50% false positive rate, indicate that he is likely allergic to eggs, milk, and wheat.
I think that we could fairly easily avoid eggs and milk, but the wheat thing is going to be really difficult. Wheat, or byproducts thereof, is in EVERYTHING. Just think: bread, rolls, tortillas, bagels, muffins, pancakes, crackers, pretzels, pizza, pasta, cereal, soy sauce, MSG, cookies, cake, breading on baked or fried items, …. the list goes on and on.
Luckily he is likely NOT allergic to oats, corn, rice, soy, dust, mold, or cats. I’m very pleased that he handles soy OK. We have thought that he was sensitive to it since May of last year; and perhaps he was, but has outgrown it. Soy is another ingredient that’s in absolutely everything.
The allergist recommended we see a nutritionist to help us formulate a diet plan for Jamie, since we were at a loss for what we could safely feed him and still be sure he gets all the nutrients he needs. When the nutritionist weighed him, it seemed that he had lost a little bit of weight over the past couple of weeks. Of course every doctor’s scale is different, but it raised some alarm bells. She wanted us to get more calories into him each day (a baby his age and size needs about 1200) in order to keep his weight up and maintain proper nutrition. So we’ve thickened his formula by 50% and we are trying at every opportunity to stuff food into him.
He is rather resistant to this idea, though. I suppose a lifetime of food equals pain means that it’s going to take some time for him to learn to like food. We have an enormously difficult time getting him to eat much of anything at mealtimes or as snacks. Occasionally he’ll seem hungry and eat a whole serving of oatmeal or fruit or veggie puree, but usually it’s a struggle to get him to eat more than 2 or 3 bites.
It turns out that he likes bananas (and isn’t acutely reacting to them like he did last summer) but hates mashed potatoes. We were counting on potatoes to be a star of his diet, since they are nutrient-rich, starchy, and full of calories, especially with the soy margarine we added to them. We’re going to keep offering them to him, though, in hopes that he’ll change his mind.
And now, actually, he seems to be off his banana kick too. So we keep trying to find things that he likes.
Next week, he goes back to the allergist for more extensive testing. They’ll put actual food samples on his back, and seal it up with a bandage. He keeps it on for two days, after which they check daily to see how he’s reacted. This is supposedly a more accurate test.
The good news is, he does not seem to be in nearly as much pain anymore. He still occasionally has gas or is just generally fussy in an I-don’t-feel-well kind of way, but it’s much better than it used to be. And he sleeps better as well. He still wakes up at least twice per night, usually three times, and wants formula, but he’s generally easy to get back to sleep. It is probably helping that we’ve put a mattress on the floor of his room and are letting him “put himself to sleep” there, with one of us lying next to him. He seems to prefer that to being held and rocked. Once he’s asleep we transfer him to the crib, but are considering alternative options to that now.
I am doing casual research to broaden my culinary repertoire to include foods that Jamie can eat (no wheat, eggs, or dairy — more on that in my next post).
I adapted this casserole from the Moosewood Cookbook. It is delicious. Sadly, Jamie did not seem to think so. But it was a very different taste and texture from anything he’s used to. Maybe next time he’ll give it another chance.
Spinach-Rice Casserole with Beef
2 cups water
2 cups Minute Rice (or use regular white or brown rice, and cook it according to package directions)
1/2 pound ground beef, 85% lean
1 medium yellow onion, diced
1 pound frozen chopped spinach
2 teaspoons garlic salt
1/4 teaspoon cayenne pepper
1/4 teaspoon nutmeg
1/4 cup sunflower seeds
Sharp cheddar cheese, shredded
Cook rice according to package directions (for Minute Rice, boil 2 cups of water, add rice, stir, cover, remove from heat, and let sit for 5 minutes). In a medium saucepan or Dutch oven, cook ground beef over medium-high heat until browned. Add onion and spinach; cook 5 minutes. Add seasonings and sunflower seeds.
Top with shredded sharp cheddar cheese, for the non-allergic. Vegans can leave out the ground beef and still have a tasty nutritious meal.
Last Monday Doc took Jamieson to the pediatrician for his one-year checkup. Overall everything (other than the usual digestive issues and eczema) is fine. He is in the 95th percentile for height, weight, and head circumference — back on the charts, at last! Here’s hoping he slows down a bit in growth. He is 27 pounds 13 ounces and 31-1/2 inches tall.
The pediatrician (whom we just love; Dr. Michael Brown with Pediatric Associates of Dallas, in case you’re in the market for one) asked if we’d made any progress with his food sensitivities and eczema. Doc told him that things were overall pretty much the same, but that the past few nights had been really bad, with Jamie waking up between 6 and 8 times per night in pain. Dr. Brown asked what Dr. Whitney, our gastroenterologist, was doing to treat it — and had she done an endoscopy yet? (No.) We hadn’t seen her in a while but were due to a few days later, and he asked us to have her give him a call so they could discuss Jamie’s case. Now maybe doctors wanting to work together like that is common practice, I don’t know. But it’s a really good feeling to know that our current doctors actually care enough to try to solve our son’s problem, rather than just telling us that there’s nothing wrong or that WE need to work harder to eliminate his food allergies through diet.
We saw Dr. Whitney last Thursday. I told her right off the bat that we were at a point where we felt we needed to try something different. Controlling his symptoms through diet just has not been working well enough. She immediately suggested that the next course of action should probably be that endoscopy that Dr. Brown had mentioned, plus a colonoscopy and biopsies. She had hoped that he would grow out of his sensitivities, but since he was now a year old and still having difficulties, this is the next step in the quest to solve his problems.
So Jamie goes in on Wednesday for surgery. :(
I’m not sure if “surgery” is the best term; they’re not going to cut him open or anything but he will be under general anaesthesia. They’ll stick cameras up his butt and down his throat (Doc hopes that they don’t just rinse off the one camera between uses) to look for inflammation as well as the presence of certain types of cells that would indicate allergic reactions. And they’ll take biopsies of his intestines and esophagus (I think).
And after that, they’ll be able to recommend treatment. There’s a possibility that he’ll go on allergy medication, which will have an added benefit (if you choose to see it that way) of making him drowsy at night. He may also go to see an allergist for a skin scratch test.
I’m a little bit worried about the anaesthesia part of things, but I really think that this is the right thing to do. I’m not sure what else we can do at this point. Life really hasn’t been fair to Jamie. He just doesn’t feel well most of the time. I hope that we can find some answers and he can begin to feel good and be able to get some quality sleep.
