"What's That?"

At Little Man's 2yr.well child visit with the pediatrician, our biggest concern- outside of his FPIES (but that is managed by his GI)- was his speech.   He clearly had good processing but his speech was somewhat behind where his brothers were at that age, but still within the "window" of ok for his age.   Give it 4-6mo. is the recommendation of our pediatrician, we would wait and see.   Over the months he has, in little bits, added new words to his vocabulary.    Today, as we read an ABC book, he pointed to the pictures, "what's that?" he asks over and over;  and I would answer...a ball, a cup, a fork, a gorilla, a horse, ice, stars,....object by object, word by word, he repeated every one.  What's more, he went back through and 'read' the book himself- saying the words we had just read.   His vocabulary is finally really starting to take off in the way I expected it to and hoped it would months ago. 

Here he is reading his Micky Mouse "toodles" book, which he loves (we don't even have cable and he's rarely seen the show but enough to make an impact on him I guess!) He loves this seek-and-find book.   He's growing up so fast! 

Progress

Sorry for the multiple posts today but have a lot on my mind lately and realized I forgot to share our small victories....

We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.

Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.

Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!

He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.

These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).

Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.

Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.

"Hi!"

Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).

We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.

Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.

Many faces of Little Man

The many faces of Little Man....having more good days than bad lately. He learned how to High Five this week- he even says it!! He loves to make all sorts of animal sounds. Loves to play peek-a-boo and clap his hands. He gives the best hugs and kisses. He is such a loveable little guy!

Despite having blood in his diaper yesterday he had a good day, he has not had any today but has had very loose stools all day...and he clearly isn't feeling good and now the detective game begins again....what is causing all this? The Neocate? The new changes with formula? A viral illness?

I called our Allergist right away this morning, he confirmed my thought process that the trace proteins in the Neocate are continuing to assualt his intestines and now has moved to causing colitis. He urged that we stop Neocate immediatly. We notified our Dietitian of our new curve ball and she worked all afternoon on finalizing his specific new formula- Hemp base, carbohydrate sources, complete amino acid source, vitamins and minerals and a little extra fats....my kitchen looks more like a science lab! But I am SOO excited at the possibility of continuing to see his true personality shine ALL day instead of just a few hours here and there, or not at all because it is buried underneath all the pain. Today has not gone as well for him, I suppose he just feels lousy (Allergist said he might -- encouraged me to give him lots of pedialyte today...well, unfortunatly Pedialyte is all corn derived as well). He seems to be running a low grade fever this afternoon, so trying to keep an eye on that. He just couldn't settle down for a nap although clearly tired. I gave him some of his compounded ibuprofen and that helped A LOT -- which is great but also confirms to me that he is in pain. The ibuprofen wore off before it was time to give him more, I tried everything and he was not happy - so finally gave him more ibuprofen and he finally gave in to sleep.

I do not like not knowing what is wrong, or worse- how to stop it or help him....it simply breaks my heart. Hopefully he will get good rest tonight and feel better in the morning.