The Burgdorf Family Blog: December 2012

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!

Our masterpiece

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.