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)
O Tannenbaum, o Tannenbaum,
Wie treu sind deine Blätter!
Du grünst nicht nur zur Sommerzeit,
Nein, auch im Winter, wenn es schneit.
O Tannenbaum, o Tannenbaum,
Wie treu sind deine Blätter!
translation...
O Christmas Tree, O Christmas Tree,
Your branches green delight us!
They are green when summer days are bright,
They are green when winter snow is white.
O Christmas Tree, O Christmas Tree,
Your branches green delight us!
Christmas is my favorite time of year. Not just because of the gifts, but because the warmth of the home, the beautiful Christmas lights (I am still waiting husband...tick tock) accessorizing peoples homes, and for the Comcast "yule log" on On Demand (really, it is amazing and I look forward to it every year). Umm...hopefully, you know what I am talking about, and if you don't, you should learn -you are missing out. Oh, and of course, because of family.
For the last three years now, we have made it a Burgdorf/Hustad family tradition to go to Silveyville Tree farm in Dixon to get our Christmas trees and ride Santa's sleigh. Otto, and myself opt for the beautiful pre-cut trees
They even haul them off for you on a tractor...I think ours in on this somewhere
This year I was exceptionally annoying, I had the workers pull out 4 or 5 trees before settling on the first one Brandon had selected. Brandon thinks he over heard them in Spanish, saying some not so nice, things about me. I can't help that I am so particular...
Tanya and the boys, opt to cut theirs down
Lucas giving it his best
papa giving it his best
it turned into a "piggy pile", as usual
Wyatt and Elle giving their support
After we all select our trees (even the kids get their own little ones for their rooms), we wait in the line for the sleigh ride with Santa. I think the reason the kids love it so much, because it is not for the rides excitement or elevator music that plays while slowly making our way through the sparse trees, it's the lollipop's they get.
the whole gang (well, minus me the photographer)
Harlan and the elf having a laugh
After an unusually long wait, we were off...
It was another fabulous trip, and now we have another fabulous tree!
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!
Wow, where has the time gone? I can't believe that Harlan, "the boy", "big boy", "truck", whatever you call him, is 9 1/2 months old. I mean, really? It seems like yesterday he made his presence in the world, but when you see him, it seems like over a year ago. He truly is a BIG BOY. We just had his 9 month well baby visit today and here are his stats,
weight: 23 lbs 6 oz
height: 30 inches
How does he measure up to his sister? Elle at 9 months was,
weight: 20 lbs 12 oz
height: 29 1/4
Just because I actually have them (thanks parentals), here is how he compares to his mama at his age
weight: 18 lbs 13 oz
height: 29 inches
Needless to say, he is thriving. Despite his food allergies and troubling FPIES diagnosis, he continues to grow at an accelerated pace (94th percentile for both weight and height).
I was surprised to find out at his appointment that the little sores he had on his hands and feet were not from the constant sucking of them, like I thought. Instead he had the very common, not as alarming as it sounds, "hand, foot and mouth disease" virus. It is highly contagious in the first week, which he has passed at this point (sores are on the mend almost null), but wow, I wish I knew this before having a play date with my dear friend, Nicole, an her two children (her oldest for sure has it and has already passed it to his preschool class). Or having Tony and baby tone, "Samuel", over for the first time ever to my place yesterday! It was such an amazing visit, so I only pray, Samuel doesn't get it. Oye vey!
How precious is he!
Oh yeah, he also has SIX teeth pushing their way through his gums right now...No wonder he has been pitiful for the last week, plus.
As for his allergies. We did go in for a follow-up/next step appointment, and he encouraged us to just continue offering new foods and textures to him systematically. This is easier said then done given his painful reactions are hard to bare. I understand the logic, but it isn't fun. He recommended we start with Cheerios. Fail. He also put in a referral order for us to see a specialist, either an FPIES allergist specialist, or a pediatric GI. Hopefully we will find out soon, and get in to see them asap. The more we know the better. The allergist made it clear that this is not a common diagnosis, and admitted to only giving it out, a few times. We are among one of the lucky ones.
FPIES reactions are usually caused initially by rice, oats, soy and dairy. However, egg, barley, wheat, sweet potatoes, squash, poultry, corn, and legumes are also very common triggers. After joining FPIES mommy forums, and blogs, to do my own research, I discovered many other common first food triggers (prunes, peaches, banana,strawberries, blueberries, carrots, avocado). Harlan has reacted to many on ALL the lists. One step, or one food at a time, we will figure this out, and hopefully get him eating more table food, and relying less on "liquid gold" as he nears his first birthday. For those of you wondering, we have not given him egg yet, despite seeing the "guru". We plan to soon. It is on the "trial" list, and I am semi-confident he will pass. Right now, we are trialing "rice", and so far, so good. However, it builds and can create reactions as late as 10 days later. Keep your fingers crossed for us (we are on day 4).
I will leave you with some recent pics of the boy and the fam....
Hello, everyone...It has been awhile. Not awhile that I haven't blogged, I have been doing that everyday for the last 15 days actually. I started a mommy blog (http://magazinemom.wordpress.com/)
a month or so ago, to discuss parenting challenges, thrifty-ness, and crafting projects, etc.. I recently joined a group of women in a 31-day blog challenge. My topic, "Confessions of a magazine mom...The things you wish someone would have told you about pregnancy and motherhood." If you are interested in checking it out, just know some of the topics on my 31-Day blog challenge, are a little graphic (in the female organ sense) and incredibly politically incorrect (just the way I like it). My ultimate life goal is to turn this this into a book, so I really laid it all out there. I realize it is not intended for a family audience, but you might get a kick out of it. You can always carouse and see if it tickles your fancy. I recommend you skip the "conception" blog, especially if you are one of my parents or in-laws. If you like what you see, click on the "follow" link on the bottom right of the blog, and you will receive all new post directly to your email. Make sure you look at all posts, including how I got the title on this "about" section.
Any who, shameful plug, I know. My real intent was to update you all on Harlan and Elle. As you know, Elle began her second year of Preschool at Davis Parent Nursery School in September, and is still LOVING it. She is, like me, a social butterfly who wakes up every morning wondering which friend she will be playing with that day. On a preschool day (M,W,F) she is ecstatic. She loves her teachers, and she gets to be with her best friend, Kennedy! She has made many more friends too
being kitty cats
Kennedy, Elle and Raya
here are some of her preschool friends at the park
She is really into letters right now. Both "writing" letters and putting them in her handmade mailbox, and learning to write the letters in the alphabet. She can even write her name. Sometimes it is "llee" or "eell", but most of the time, she gets it right. I am a little worried she may inherit her fathers dyslexia, but nonetheless it is adorable. She is especially into the letters that people she know "owns". Like her letter is E, and Harlan's is H, Briana's B, G for G-pa, etc, etc. No one else can have these letters, just their rightful owners.
She has adjusted to having a brother, finally, but she still is not ooogling and ogling over him. She does talk to him and let him play with her toys, although with Harlan now mobile, no toy is safe. So it may become an issue soon. Here is a video of him on the move. It is not his best work, because every time I attempt to video him, he just stops and smiles at the camera, but it's a glimmer into his new active life.
He really is a happy BIG boy, as you can see at the end of the video when he looks up and gives a big smile. I actually love all the nicknames he has accumulated in his 8 1/2 months of life. My mom calls him "porker" or "chubba bubba". I call him biboy (like big boy minus the g), Elle calls him "mustard baby" or "baby tookie" (pronounced "two-key") not sure why, and my favorite, Brad calls him "beef". All very fitting, of course. Last weigh-in a couple weeks ago he was 22.5 pounds. Needless to say, I do not have to lift weights.
He is eating some solids now, but reacts to many things. He does have lots of intolerance's, and possible IGe allergies to foods (I have another appointment with the allergist booked) and has been diagnosed with Food Protein-Induced Enterocolitus Syndrome (FPIES), a type of food allergy affecting the GI tract. I am learning more everyday, but have so much more to learn. It will be a part of his life for at least 3 years, but will most likely always suffer from allergies of some kind. So far, the only foods (that we have given him that are not on the top list to avoid) he CAN eat are: apples, prunes, blueberries, pears, peaches, strawberries (questionable), nectarines, honeydew, and spinach.
He has shown signs of allergies/intolerance's to the following: Eggs, all dairy products, wheat, gluten, and all grains, all starches, peas, beans (questionable), carrots (questionable), bananas, watermelon. I think that is it, for now. He doesn't leave a lot of room for me to offer nutritious meals, that's for sure. He is pretty behind on eating. He eats less table food then a "normal" baby would have at this age. I think Elle was already eating pizza by now. He still can only do puree foods, or fruit in, what Brandon so lovingly termed, the "suck sack". No finger foods or chunks of anything yet. He just pushes them out with his tongue.
My sister turned me on to her acupuncturist Dr. Jens Maaseen, "the guru" as I call him. He specializes in many things, muscle testing for allergies being one of them. It is a procedure known as Nambudripad's allergy elimination (N.A.E.T), where you identify an allergy, intolerance or sensitivity through muscle testing and then treat it through acupressure/acupuncture (well that his how he did mine). Skeptics are welcome. He will even admit to the crazy notion that you can hold a vile of a potential allergen in one hand, and hold your arm up while he pushes down on it to check your strength in the other. If you can't hold your arm up (loss of strength) it means you are allergic or intolerant to that source. I know it sounds like voodoo witch stuff, especially since you quite literally get needles placed in your body at some point, but it is quite remarkable. Foods that I was intolerant too, my arm would buckle. I had zero strength..it was almost as if it were someones elses arm attached to my body. He tested me on a variety of things (he has over 200 vials of potential allergens, so we only did about 20), mainly the ones I would most commonly encounter in my diet.
Of course, the real reason I wanted to go to him, was for the testing of Harlan to find out if my assumptions were correct, and to see which FPIES triggers, I should have him avoid. How do you test a babies strength, you ask? Oh, through me. Are you completely thinking I am off my rocker yet? I simply held Harlan's skin (I held his belly) with the vial hand, and Dr. Jens tested my other arm for strength. Don't worry, of course we checked the same vial without me touching him to see if the same results applied. They didn't. Harlan is severely allergic to egg (which I knew, but this confirmed), but I am not. While holding him, I had ZERO strength. Then I would stop holding him, retest and I HAD all the strength in the world (well for me). I know you western medicine-er's, this is a tough sell...but really, what do you have to lose? The only drawback to this N.A.E.T technique, you can only cure (alleviate) one identified allergy at a time. For myself, I chose soy (my most severe were soy, calcium, and gluten), amongst a whole slew of sensitivities/intolerance's/allergies I had. It was very enlightening and unnerving all at the same time. Harlan's revealed exactly what FPIES says. His biggest were, egg, dairy, nuts, gluten, all grains, and all starches. He did not show reactions to beans, which is great news. I haven't really given him any yet, but I plan to since he isn't getting protein anywhere else. According to the FPIES organization, turkey, chicken and fish are also triggers. Clearly, we could not, nor did not, test him for everything. We had a limited time table for him since it was his nap time. My sister actually rescued him and brought her back to her house at nap time, while I stayed for the remainder of my 3 hour appointment. I am pretty sure, he is not making any money on the deal. He is just a guy, who cares deeply about people and their well-being and nutrition. I have not had a chance to stream the movie he high recommends, "Genetic Roulette", but he says it is a must read for people, especially those with children. He has no part in this movie, nor does he receive any kick-backs from it for telling us about it, he is just a genuinely caring person who likes to educate people on nutrition. It is sad that us skeptics, assume everyone is in it for the money. I will say to you skeptics, because I am sure you are wondering, I did not know what vials I was holding while being tested. He told me AFTER each one. So, how does he treat you? Well, for Harlan he had me hold him on his lap touching my stomach. He stood behind me and had me breath various ways, while applying pressure down my spine. After about 1 or 2 minutes, we were done. He then had me retest strength, and lo-and-behold, I had full arm strength. Harlan did have to literally wear the vial of egg on his chest (taped) for 25 minutes too, and he was not to touch, or eat egg, and a list of other foods for 25 hours. Not hard since he really only eats formula. For me, it was the same, but after the breathing he places about 10 acupuncture needles in my hands, arms, legs and feet. After 25 minutes of laying there under a heat lamp, I was done. My strength, restored. He did say for me, that it might take 2 visits since my allergy was so severe, but for Harlan, well all kids, cure so fast that one should do the trick. I haven't fed Harlan any egg yet, I guess I too am still a little skeptic. I will say my soy reaction is almost null. I guess the proof is in the pudding, or the egg. I will keep you all posted.
The Burgdorf family tradition has been to take a big week long vacation together in...the first time we went to Hawaii and the next year we went to Fort Bragg for what Otto called the "poor man's Hawaii" (I find it all to be fantastic). This year, we went to Mendocino just minutes away from the house in Fort Bragg (since the year before was such a big success). Prior to leaving, I was telling a friend {Molly} we were heading off for a vacation. She quickly responded with, "you are going on a trip...a vacation is without children!" She could not have been more right. Don't get me wrong, we love our kids, but they sure make it tough to relax. Nonetheless, we managed to enjoy ourselves.
Our house was beautiful and located right on a bluff looking over the Caspar beach (in between Fort Bragg and Mendocino). We could hear the sea lions "ark-ing", the seagulls, the waves, and we could watch the fog roll in and out (it never really rolled out unfortunately, except for the day we left).
The house
the view of the beach from the house
The trip got off to a rocky start for the Burgdorf's and Hustad's (traveling together). Upon Tanya's arrival to the ranch, she opened her trunk and out popped an entire container of lego's. By the look on Lucas's face, it must have been his box.
still in good spirits
Then, once they left the ranch, after traveling over an hour, they realized that due to a fire, hwy 20 was closed and they had to turn around and head a different direction. Since we left from Davis, we went 80 to 37 to 101 to 128. We made it in 4 1/.2 hours. It took them 7. It was a good thing it was our night for dinner :)
The house was perfect for our family...maybe a little too perfect. Many times we just wanted to veg inside instead of exploring what the city had to offer. I also blame the dreary weather for that. I am really a pretty lazy natured person, and sadly, I think my daughter has inherited that trait from me. On a walk to the lighthouse, she had Brandon carry her most of the way.
Even a bike ride (with her in the Burley trailer) seemed daunting to her. I have to say, it was not easy pulling Elle in the trailer...it was a little too daunting for me. Brandon "bjorned" the boy while he was riding. Not sure how safe that is, but it was our only option, and it makes for a great story (and picture).
We also practiced some sports while we were there...hitting the baseball, throwing the football, catching, etc.
The highlight of this was Elle saying to Tanya and me, "you know what would be funny...if I throw the football at Daddy's beer and knock it over!" I am not sure Tanya or myself actually thought she would/could do it, but before we knew it, she had. On her first shot, even. The best part was that it wasn't Daddy's beer, it was papa's! Not sure if he thought it was as funny as we did. Sadly, shortly after this, Elle tripped on a baseball and fell on the gravel, hurting her hand, knee and elbow. It put an end to this fun time. Poor thing still complains of the pain on her elbow (it really was pretty bad).
We also spent a lot of our "lazy" time in the hot tub, or the "hot pool" as Elle so adorably calls it. There are certain words and phrases I don't even like correcting her on because they are so cute. That is one of them for sure.
Who knew that Barbie's would be the hit toy amongst the cousins...funny faces, yes. Otto's gonna hate me for this pic, but it is too cute to pass up. There is nothing wrong with two XY chromosomes, playing with Barbie's anyway!
When we weren't in the hot tub, or playing ball,we were at the beach.
we relaxed
did cartwheels
Drank beer
did funny moves
wave walked
played in the sand
and we launched rockets ( we never did recover it). It was one heck of a launch. I couldn't even see it the sky it shot up so high.
the launch
off it went
We also did some bike races.
I don't like to brag, but I did win one. If I were on a regular bike, Tanya would have smoked me for sure, but this time I had an advantage...
Either way, victory smells nice!
Lucas is our photographer
piggy pile
If we weren't doing ay of these fun outdoorsy things, we were playing inside. They had a Wii with a ton of video games, and though I am not for many of them, they had the dance video one, and Lucas and I had a blast and worked up quite the sweat, I might add. This maybe something I would like to purchase in the near future (maybe then I might actually exercise).
We also did some reading
Trudie, Tanya and Brandon managed to sneak away to go horseback riding. The story was told that Brandon was riding the horse for Mongo, from Blazing Saddles. It was just massive and a true Clydesdale...When he got off he looked like the quintessential cowboy bumper sticker...you know the bull-legged one. Tanya's horse was a butt sniffer and I am not sure what attributes Trudie's horse portrayed, but I think they all had a lovely time. I do know, they all came home and poured themselves a stiff drink :)
Despite Harlan keeping us (Brandon and me) all night, every night with his cold, and sweet potato FPIES reaction, it was a restful trip. I wish the weather god's shined a little more light , but it did beat the triple digit heat wave we were having in Davis. A big thanks to my amazing in-laws for yet another generous family trip!
