what happened at the neuro &....

so we met an amazing neurologist last week and are hopeful that she will help us find an answer as to what is happening in lauren's body- on a metabolic level. dr. scavina knows muscles and cells and really saw what i've seen from the beginning w/lauren- that there is a disconnect between her upper and lower body. for so long i think everyone just thought it was an orthopedic problem and although that is certainly true we also know there is a neurological aspect to her problem. so the bad news was having to take 8 vials of blood to send out to test for lots of new possibilities but the good news is that there are new ideas are on the table. for lauren that means a new vitamin to try for now and if we find out the underlying source of her muscle problems perhaps we'll make real progress with her mobility and at the least keep her body from experiencing another relapse.

9/14 tuesday is lauren's G-tube procedure at AI. Dr. Duffy is her surgeon and will take care of our little lauren. she will be admitted on tuesday morning and by thursday we should be able to take her home. will keep you posted...

thanks so much for checking in w/us.
love,
jen

what's new

ok- busy week. on monday we met w/lauren's ortho dr. to discuss her hips, meds, and muscle tone. Dr. Miller and his P.A. Linda Duffy were really pleased to see how well Lauren is doing from a motor skills perspective. After they spent some time w/her they also noted how loose her legs have become and they thinks this could be her body changing and not the effects of the botox injections and valium meds alone. He refered us back to neurology to meet w/someone who knows more about muscle problems and we'll meet with her tomorrow, thurs aug 19th. the hips are going to need surgery but we'll wait until the G-tube and the neuro stuff before we do that. phew!

we met w/dr. duffy again today- he's lauren's surgeon who will handle the G-tube procedure. we're "a go" for that and i will have a date hopefully by friday. he does surgery on tuesdays so we're looking at a tuesday in september.

really hoping tomorrow's mtng w/the neuro yields lots of info for us (i always hope this w/each new specialist!) since this particular neuro comes highly rec. from our PT Dorothy as someone w/lots of knowledge about tone and metabolism. dr. skevina (new neuro) may help us w/the B12 dosing, vitamin supplements, and immunizations problems that lauren has had. lauren may also (finally) have a muscle biopsy- more to follow on that another time....

thx for checking in w/us- it's been a long week but w/one more appt to go i am hoping we finish strong!

l,
jen

Quick Update on Lauren

Lauren's GI imaging showed a mild reflux occuring in her upper GI but we're not sure how significant this is yet. I will discuss this with a few of her doctors to see if we need to try treating this problem with meds or if it's insignificant and not affecting her appetite.

On the B12 front- very good news here. Lauren is definitely moving around more- she rolls onto her belly again and will "army crawl" to get where she wants to go. She is having trouble standing given her pronating feet and hip problems (one leg is now significantly longer than the other) but hopefully the bracing and PT will help with that. Hip surgery is in her future, we're just now sure how far into the future- it's definitely taken a back seat of late.

Her spasms continue to give her pain throughout her days and nights- some are better than others. Her meds do seem to help but when we see her ortho doc next week we'll discuss the pain and see if there is anything else we can do to help her feel better.

Within the next week or so we hope to know when the G-tube procedure should be scheduled- we'll keep you posted.

Thanks for checking in with us.
Love,
Jen & family

"Order of operations"

So this is the story of getting three kids out the door and down to the hospital for yet another doctor's vist. after traffic and construction and crying (not just me) we're finally there and on time (phew!). then we wait. and wait. and wait some more. and just about the time i am ready to lose what little patience i still have the very kind surgeon comes through the door (nearly an hour behind schedule today, thank you) and asks us why we are there.

He takes lauren's history and this is probably the 100th time i have gone through this- (ok probably only the 15th time but it's not a short history), and after we chat about why she is there- the G-tube evaluation- he tells me that he really needs to see us AFTER the appts. with medical imaging and the GI doctor..... and those are next week.

And so it seems that we have gotten the order of operations wrong and we'll just do this one all over again in 2 weeks. hopefully this time getting the sequence right so she can actually get on with her actual operation. Ha Ha Ha

Thanks for checking in w/us. love you all.

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Trusting advice

Lauren lost a bit more weight and her height has stalled now as well so her diagnostician pediatrician (this is the doctor who "staffed" her medical case with the team of specialists a few months ago to try and give us some answers) has recommended that she be given a feeding tube to provide her with the calories her body needs but is not getting on her own. Obviously this is not something we actually want to have put Lauren through (or myself) but to see that she weighs less than a pound more than she did in October 2009 we know we have to try something else besides oral supplements. It's hard to see that she needs this procedure however because she looks good- she sleeps, plays and is learning. But the chart (don't get me started on charts though) does show no significant growth for several months. Ok.. so now we trust this next round of advice and schedule to meet with a surgeon and GI specialist. Because her weight issues are chronic and not due to recovering from a recent illness or something she will be evaluated for a G-tube instead of the NG-tube, the difference being that the G-tube will go directly into her tummy which lessens the chance that she will pull it out. Having a tube in your nose 24/7 then hooked up w/food at night is not a pleasant thing i imagine so our concerns about doing that were taken seriously and we can hopefully skip that step of the process.

Her appt w/the hemo/onc doctor went well. He is recommending more dosing of the B12 because her MCV humber has come down slightly (this indicates the macrocystosis issue where her red blood cells are too big) and he'd like to see if giving her the B12 injections more often will bring that number down into a normal range. We (the dr.s and andy & i) believe that her lack of appetite and red blood cell problem are related. We hope that someday we can get to the causing agent and address that instead of only treating the symptom of failure to thrive. Here's to hope.

what's happening this week

i am touched by all the comments lauren's blog received yesterday and am reminded of how much she is loved by so many- thank you. and thanks for bearing w/me as i figure this all out (blogging and this new world of caring for lauren). pls feel free to comment or ask questions about anything i'm posting. and forgive spelling errors.

the week ahead- on thursday lauren will see her favorite doctor to receive an update on her blood work. her hemotologist noted an abnormality in her red blood cells back in january (something called macrocystosis) and we're watching her blood carefully for changes.

she will also see her diagnostic pediatrician on thursday for a weight check and a discussion about implementing a feeding tube overnight to help her take in more calories. lauren is a peanut and has had some trouble gaining and maintaining a good weight. this particular doctor was brought in a few months ago to review lauren's medical hx to help find a diagnosis. she has such a varied presentation of medical "issues" (ha!) that it's been difficult to plan ahead for her care. we have been reactive on many fronts. so, this dr. and his team of specialists haven't come up with anything yet but we are hopeful that someday we might have a road map to help give us an idea about what's next but for now we're winging it.

What's happening with Lauren

Ok. So I (lauren's mom, jen) am finally getting with technology and have created a space for lauren's family to communicate how she is doing and what's happening with her life. Bear with me as this is all new to us! And thanks in advance for your care and concern for lauren and her family.