Boy, Oh Boy

 

Seriously, a year? I can't believe it!

So, how is the boy measuring up these days? What is he up to?

Clearly, despite his less than desirable and restricted diet, he continues to thrive and exceed all expectations for growth of an FPIES kid. Not to say that feeding Harlan doesn't continue to be a challenge. Not just because of his limited diet, but because he whines the whole time, throws his food, and ruins our meals with his screeching and constant demands. No, I am not bitter. In his defense, I think he is frustrated with being the served the same options, 3 meals a day, and he has always (since his first spoonful of food) had wanted to feed himself. So, I thought I would try a new tactic. I purchased some suction cup bowls, so he could not tip them over, or try to eat the bowl, like he has done in past attempts. It is "helping" the situation, but he is still frustrated. He does spoon feed himself with accuracy, when he is not throwing the spoon. I tried to get a video of him doing it, but of course he waited till the camera was off to do it. Oh boy, Oh boy...this kid. However, he did manage to let out a pretty good "Walls" worthy burp. Elle even fed him a spoonful afterward. She really has learned to love her baby brother (except when she is playing in her room).

 

Since my last "boy" update, we have added only one new SAFE food for him. He can now tolerate, millet, pears, mango, spinach (his absolute favorite) and the newby, broccoli! He continues to have more food fails, then passes. Our latest food fails have been quinoa, coconut, and surprisingly, canola oil. Canola oil was a "typical" (non FPIES) allergic reaction though, resulting in an instant rash around the mouth and diaper area , not an intestinal one. Very bizarre. I was really hoping to get a "safe" oil for him so I can try baking. I think I will try cottonseed next? I am open to suggestions...

Harlan, is not yet walking, but he becomes more and more steady by the day and stands like a pro. If he can find furniture, a chair, a leg, or a wall, he will use it to help him walk, over crawling, any day. My favorite is when he climbs under the kitchen table to get a chair and begins his journey. Elle always yells,"Hey, chairs are not for walking, they are for sitting silly!" It really is quite comical...both the sight of him using a walker, and Elle lecturing him on the properness. She could use a lecture from time to time too (which she gets from yours truly).

He has more hair on his head then Elle did at 2.5, and it has the most adorable curls at the ends. It reminds me a lot of my cousin Shanna's hair when she was little, and I cherish it...both her memory, and his adorable trestles. I honestly don't want to cut it, ever. Brandon on the other hand, says it can't touch his shirt collar, but I disagree. I think the perfect length would be just touching. Either way, it is adorable, and it brings a smile to my face every time I run my fingers through it. I won't lie, he has been accused of being a "girl" twice this month. These people who have blatant disregard (oblivion) for gender specific clothing baffle me. I mean the boy is dressed in head to toe shades of blue, and he is a girl? I remember when Elle would be in a pink dress with a pink headband with a huge flower or bow attached to it, and she would be called a boy. Really, people? Granted she had NO hair, but the outfit isn't clear enough? I tell ya...

Shockingly, he is no word smith either. Elle was a savant, so I guess I should have known, I wouldn't have two early talkers. I guess this is the area of development he is not quite up to snuff. They say (the experts) he should be saying Mama and Dada indiscriminately by now, but he isn't. He babbles a ton, and practices with sounds, and understands commands, so I am not worried. It is just a stark contrast from what I was used to. This is when I wish I did baby sign language with him so he can communicate his frustrations a little more. Oh, well. I am sure he will be talking soon enough...well if Elle doesn't do it all for him. Bless her heart.

Harlan is "a handsome little devil," as my grandma Phyllis would have said. I feel like he looks a little less than his daddy these days, but I am not sure that he has any of my good looks (ahem) either. Nonetheless, he is beautiful little boy, with an amazing spirit about him. A little coy at times, but rarely shy, his smile lights up any room, and his laugh is infectious. Elle LOVES when he belly laughs and tells me to do whatever it is I am doing to cause it, more!

Oh boy, is he a boy. When he is not pushing around a truck or car on the ground, he is trying to discover how something is made, playing with his dad's empty beer bottles, discovering what it means to be a janitor, throwing toys in the toilet, and destroying anything that he seems fit. Lord help me...I can only imagine what my house is going to look like once he does start walking and learns to climb (because he already wants to).

You can't help but love this little guy. I know WE do.

If you're goin' to San Francisco....

 



 

      Well, we finally had Harlan's "Specialist" appointment at UCSF. I wish we actually saw an FPIES specialist, though. He was a very nice young man, and I could tell, he would be very helpful if he actually knew anything more about FPIES then what he has read in some medical journal articles. It was a fear of mine that this would happen. I have discovered through this process, and watching my sister go through it with my nephew Tyler, that when your child has a rare condition (in Tyler's case, Angelman Syndrome) , you become your own expert and advocate. Our pediatric GI was incredibly receptive to everything I shared with him, and even thanked me for the new knowledge pertaining to FPIES. He was very quick to admit that he was not sure how he could help Harlan, other than to perform a scope of his intestinal tract, both upper and lower and take biopsies of both. Harlan would be given anthestia and would be completely out for the procedure which would take place in the operating room. Of course, I imediately teared up. The thought of my little boy with a tube down his throat for breathing while laying on some brightly lit table in a cold operating room scares the crap out of me. I am sure it would anyone. At this point, we are unclear as to wether we are going to go through with it. They will not really find any new discoveries, other than inflamation and vulli damage consistent with other FPIES kids. It wil not help treatment, or determine which foods he will and will not react to, it can simply lead to peace of mine that he infact displays further evidence that he was properly diagnosed (which I know, he was). I would love any advice on the matter...especially to anyone else out there that has had a scope performed on them or their children.

     Another big concern I wanted addressed, was what Harlan is supposed to eat after he turns one (I can't believe how close that is). He can't drink formula forever! The doc sent in some dietitian's, who also admitted they had never seen an FPIES patient before. They did show me, and even gave me a few samples of what Harlan should switch over to at a year. It is the same enzymatically hydrolyzed formula, as his current Nutramigen, but it is "more age appropriate". It is more like a Pediasure, but it is called Peptamen Jr. To my dispair, it is NOT any cheaper than his current bank breaker formula now, it is arguably even more expense (sigh). Oh, well...not much we can do about that. I just refer to Harlan as my million dollar baby...and maybe one day, he will become a millionaire and will support his mom and dad. One can dream, anyway.

  We did make the visit a family one, and to Elle's luck, Santa was visiting the hospital the day we were there. She even got a stuffed animal from him (we all know how much she needed one of those), and apparently she was very receptive to him ( I was in the room with the dietitians during this). Last year, she cried and wouldn't even attempt to sit on his lap...so I was so pleased, to know this year would be different. After the appointment, we went to Pier 39 for lunch and some sight seeing fun. 

 

 

Elle was ecstatic to be outside with the breeze in her hair (her words btw)

she rode the carousel (twice)

she LOVES dragons!

Harlan enjoying watching his sister

a quick look at the Golden Gate Bridge

Elle being silly, again

then to the sea lions

Merry Christmas

and happy Hanukkah!

For the birds

Harlan's food trialing has been discouraging to say the least. To date, Harlan can only eat/tolerate 3 foods (pears, mango and spinach). I never thought at 10 months old (wow, already!), my child wouldn't be able to eat practically anything. My goal by his first birthday is to be able to eat a grain, a couple of veggies, various fruits, and a meat of some sort. I guess we have a few of those checked off the list, but it is my intent to get the grain one next. After doing some investigating in the FPIES blogger community, I discovered that "millet" is a common tolerated grain (practically the only one) amongst FPIES kids. I also discovered it is a common bird feed. Well, he does tend to eat like a bird, he is messy, picks at his food, and throws it all on the floor... so heck, this just might work?

 So, I went down to our local Co-op and got "hulled millet" out of the binned grains and came home to google how to cook it.

I boiled it like you would rice, and voila! He loves it!

Not the happiest expression, but he really gobbles it all up. So far, we are on day 3 of it and having no violent reactions. Keep your fingers crossed. His sleep has been disrupted the last few days (a huge indicator of a problem food), but my heart tells me it is because of his teeth (top 4 are all the way in, 3rd bottom one is coming right now, and 3 more are on their way), and activeness, not pain related.

We did finally get a referral from his allergist. He pushed very hard for Harlan to be seen by a pediatric gastroenterologist, so we will be heading to UCSF, hopefully, very soon. I will keep you posted.

 Here are some recent pics of him and the family...

swinging at the Ranch

my pathetic attempt at a picture of Doodle and me

with daddy and cousin Lucas on Turkey Day!

here he is using a wooden puzzle piece as a pacifier...he does this everyday!