Lauren- 2011

Lauren- 2011

Thursday, December 15, 2011

Lauren's latest

hi everyone!

Hope this update finds each of you well and enjoying the holiday season.

Lauren is slowly gaining weight and we're hoping she'll hit 20 lbs by Christams and keep going. Her pre-surgery weight was 22 lbs so we've still got a ways to go. Her hips are healing well and she'll continue w/PT to gain strength and mobility.

Her doctors, teachers, aides, & therapists are amazing people all working together to get the most of out of her and we are very thankful for each of them.

We're also thankful for each of you- our faithful friends and family members- who continue to support the brown family. We hope you have a blessed Christmas and healthy 2012.

jen, lauren & family

Tuesday, October 11, 2011

a little more herself today

the new pics on the blog tell the story today. up a few ounces and we're celebrating the tiny step forward.

hope you & yours are well.

lots of love,
jen, lauren & family

Thursday, September 22, 2011

Lauren turned 3 and maybe a corner

hi f&f,

Lauren celebrated her 3rd birthday this past Tuesday! She had a good day.

Over the past few days we are seeing an improvement in her mood and ability to keep her g-tube feedings down. Her weigh-in this week had her at 18 lbs even and we hope that she'll start gaining again.

Thanks for your love and concern for Lauren.

jen, lauren & family

Tuesday, August 30, 2011

a bit better

cautiously optimisitic today-

lauren's ortho doc met w/us last week and her hips are healing well which is very good news. we'll see him again in 6 weeks.

she has lost 3 lbs. since the surgery which is disgusting but nothing we can do except try and feed her a bit more each day. too much food too fast and she gives it back so it's very slow going. right now she's getting about 300 calories each day and our goal is 960 calories.

sleeping 3-4 hour stretches at night which is an improvement and oops- here she is waking early from her nap- yikes! she's just not used to her new hips yet.

off for now- hope all is well where you are.


Monday, August 15, 2011

slow going

lauren is slowly gaining strength and her PT is going well. yeah!

she is not eating well though and sleeping is still a bunch of extended naps overnight- not fun!

she appreciates all of your well wishes and prayers. thanks so much! will be in touch-

jen, lauren & family

Friday, August 5, 2011

update on post-op

hi f&f,

lauren's been home since monday and it's been a rocky week, though no surprise there. her biggest problem is lack of sleep (and mine too). she hasn't been able to move her legs since the surgery so she's not able to get comfy for sleep. hopefully she'll get some real movement soon and start resting better.

PT is going very well... her range of movement is good and she's supported a bit of her own weight each day this week (w/help).

overall, she is doing really well and is getting stronger every day.

thanks for checking in on her!
jen & fam

Thursday, July 21, 2011

"ready" for surgery

hello there....

lauren has been cleared for her upcoming hip surgery and weighs in today at a bit over 22 lbs!!!! we think we've gotten her on the right formula and she's not throwing up- so great!

her surgery is 7/27 and is for both hips plus an endoscopy and some other GI tests thrown in for fun.

she will be in the hospital for at least a week and we, of course, are hoping for an uneventful stay (no infections, fevers, or other issues).

thanks for thinking of her next week & hope everyone is enjoying SUMMER!!!!!!

jen, lauren & fam

Monday, June 13, 2011

LP results

her LP results came back normal. Dr. Morton's genetic doctors are continuing to search for the proverbial "needle in the haystack" that gives an origin to her problem(s). So in the meantime, symptom management is the name of the game and maybe one day we'll have an answer and a path.

love to all,
jen, lauren & family

p.s. new pics on her blogpage

Thursday, June 9, 2011

it's been a while

hi there. not much new to update since we're still waiting for any results from her april LP. i think i'm going to have to start stalking her doctor :) we're also awaiting her spinal MRI results from last friday.

she's not gained weight (but hasn't lost either) so her GI has asked that we ramp up her calories and we're trying to get her to take more each day- something that is proving to be very difficult to do.

just for fun we had an emergency visit to her surgeon on monday because i took her g-tube button out and could not get it back in.... gross. her doctor was able to push it back in but since it took some doing he had us get a radiology picture just in case it didn't go back into the right spot. it did. yeah. what fun. sarcasm aside lauren is on the upswing- "talking" lots and sleeping better. feeding continues to be a major source of frustration for all but maybe we'll get that figured out soon....

ok- so thanks for checking in w/us. hope this blog update finds each of you well and enjoying the heat.

jen & fam

Friday, April 15, 2011

LP all done

Lauren's spinal tap (LP) went very well and her doc got what he needed to send off to 3 different labs. Wait time is 3 weeks for some info and up to 6 months for all of the analysis to be complete. The detail I could give as to what the labs are researching could fill many pages so I'll just let you know what we find out when we hear back. Hopefully we find out something helpful.

Lauren's been pretty sore since the procedure but had a good day at school so hopefully she'll sleep better tonight.

We're working w/a GI doc to help her eat more comfortably and see about growing her- she's lost over 2 lbs since December. Very frustrating....

Hope this update finds you and yours healthy. And thanks for thinking of her/us. :)
jen & fam

Sunday, March 20, 2011


hey there,

lauren's spinal tap is rescheduled for april 13th -

she met w/her ortho doc last week and is scheduled for an mri in june and hip surgery in july-

she'll meet w/GI next week to discuss her feeding issues-

spring begins today- let's hope it heats up soon! lauren loves the warm weather- don't we all :)

love to all,
jen & family

Tuesday, March 8, 2011

pls keep lauren in your thoughts next week.... she's meeting w/her ortho doc to discuss how to fix her hip AND we're in the process of scheduling a lumbar puncture at Lancaster General for Friday to pull a sample of spinal fluid. not the most fun a 2 1/2 year old can have but hey! this is her life & hopefully this will lead to more answers for her...

her tummy seems better and she is taking her milk feedings again thru her tube- yeah!! she weighed in at 20 1/4 lbs today!!!

hope all is well where u are-
jen & lauren

Friday, March 4, 2011

lauren has not been able to take all of her milk through her feeding tube for the past week or so.... it seems like she's having some sort of stomach pain or sensitivity when receiving the milk via her tube. the GI doc and i are hoping that her stomach is just tender since she just completed her 3rd round of antiobiotics since september as well as being given multiple pain and cold medicines for her latest head cold. we're starting her on a stomach coating product used to treat ulcers which hopefully will give her relief and the ablility to handle her milk without pain again.

on a brighter note- she's "talking" more and just the other day said "juice" when i gave her a choice of juice or water- big stuff around here! she also seems to want to pull up in her crib and get up onto stuff, unfortunately her hips are still not right so she's struggling. we'll see her ortho doc later this month and will see how best to help her with that- most likely surgery.

she still loves her "school"- Lauren's House, which is a medical daycare she visits twice a week. So thankful for this program. And her time at home, (if we're not trying to feed her), is filled laughing with her sister and brother, thank goodness for older siblings!!!

hope u & yours are healthy and seeing some sunshine as spring HAS to get here one day, right!??!!


Tuesday, February 22, 2011

another skin infection on her belly from the g-tube site and a head cold have Lauren a little off her game. the antibiotics are rough on her digestion so we're doing quite a bit of laundry today. hoping to find something that will calm her system down while letting the strong medicine do its thing.

her amino acid did improve so that's a good finding- though we're not exactly sure what it means overall, we feel we could be getting close. will keep u posted on the progress w/her dr in strasburg.

thanks for thinking of lauren- hope u are well.

Sunday, February 13, 2011

not too much happening in our world. just wanted to let everyone know that we're working through Dr. Morton's list of metabolic disorders and will meet again this week to check Lauren's blood counts and amino acid levels. we're not sure if the new amino acid is having any observable effect on her functioning but perhaps she needs more time.

the lumbar puncture will be next- hopefully not until a few more less invasive ideas have been tried but we'll see what Dr. Morton says later this week.

Lauren's g-tube is still not healed right and we're hoping that we can avoid another skin infection and/or silver nitrate treatment by using creams and gauze instead.

She did lose over a 1 lb with the recent stomach bug that we all had late in Janauary. hopefully she will regain that pound quickly and add to it as well. it's really hard to see her not eat and struggle with the little food that she does try each day.

Lauren attends a medical daycare twice a week and she LOVES it- the nurses are beyond wonderful and she participates in a little "preschool" program as well. Her PT meets her there now and she has made friends :)... it's a great break from our daily routine at home.

thanks for listening and we'll keep u posted w/any changes.

Wednesday, January 19, 2011

bumps in the road

just wanted to check in and say that we've had to hold off on starting the amino (is that spelled right??) acid study that Dr. Morton wants to do. It's a powdered form of two types of amino acids that we'll disolve into her milk and give in her feeding tube. We had hoped to start it last Friday but after another infection at her G-tube site she couldn't handle food for a few days. We're hoping to get it going tomorrow night. We need 5 nights of tx and we have to bag her pee (fun), freeze it, then get it out to Dr. Morton for analysis. I'll let you know what he finds out and what that might mean for Lauren. I'm hoping it means we'll be one step closer to understanding her rare metabolic disorder- and actually confirm that this is her problem at all.

missing catching up w/so many of you. know that i think of you guys throughout our crazy days and hope that you and your kiddos are doing well.

jen & lauren

Thursday, January 6, 2011

the puzzle

so her labs came back normal and Dr. Morton is a bit "puzzled"- never what you want to hear from a doctor about your child (and we just keep on hearing that!). So... he has more ideas and he still believes he can help us but we'll have to run more tests (which we knew) and hope for more answers and ultimately treatment(s) for Lauren.

Thank you for your prayers and concern- we appreciate you guys so much.
jen, lauren & fam