Happy new year!

We had a great appointment with Dr. Holmes Morton out at the Clinic for Special Children in Strasburg PA. Finally meeting a doctor who thinks he knows what's happening (and not happening) inside Lauren's brain and body AND who has experience treating the problem, successfully. So exciting!! We're very hopeful that Lauren will make great gains both physically and coginitively through Dr. Morton's treatment plan.

More tests and results await. A possible spinal tap, or two as well, yikes! But to finally see some light for her, and for us, is the best way I can think of for ending 2010.

Happy New Year everyone!
thanks for your love and support of Lauren-
Jen

New doctor

Lauren will meet a new dr this month who may be able to help us figure out what is causing her demyelinating disorder- the problem that affects the covering around her nerves. Both her brain and spine have been affected by this problem and although the B12 injections seem to be helping the doctors are not sure why the problem happens in the first place. This doctor- Dr. Holmes Morton, has been working with the Amish and Mennonite (sp) community for a very long time and has become somewhat of an expert on rare metabolic and demyelinating disorders among this closed population of people. Lauren's orthopedic and neurologists have spoken w/him and he is very excited to meet her and see if he can help us.

That's the exciting news!!

The bad news is that Lauren will most likely have to endure a spinal tap to gather additional info for Dr. Morton- ouch. Hoping she will have minimal pain associated with yet another study- this poor girl!

Overall Lauren is doing really well... finally geting over a 8 week head cold- no kidding (and sorry to all the family and friends that we've shared that nasty bug with)... she attends a medical daycare 1x/week and LOVES "school!" Therapies are going great and she's getting stronger- over 19 lbs and growing.

Hope this update finds each of you and your families heatlhy and enjoying the bustle of this holiday season.

Love,
jen, lauren & fam

botox baby

lauren did really well yesterday getting her latest round of botox injections. she had 4 doctors, 2 nurses, and a technician waiting on her throughout the procedure so she did just fine - she loves her audience :)

hope to see the effects of the injections w/in a few weeks and that would mean her spasms slow down and her hips and legs can relax again.

she saw her ENT last week (snuck her in on a cancelation) and the dr. said she has a viral infection but should NOT need to have anything removed. yeah! she finishes her antibiotics tomorrow and i hope she'll be done w/the congestion and stuff soon.

and the big news is that she weighs 19 lbs!!! Woo hoo! so just over 2 months w/the feeding tube and she's gained nearly 2 lbs. We're very excited :)

have a wonderful thanksgiving everyone!
love,
jen & fam

the latest w/lauren

hi friends & family... thx for checking in w/the blog :)

lauren has been referred to her ENT to check out why her tonsils and adenoids are red and swollen. she's had a head cold for nearly a month now and still isn't sleeping or breathing so well. she started antibiotic yesterday and an antihistamine to help her so hopefully she'll see some relief soon.

her spasms are getting worse overnight again but we're tweeking her meds so hopefully within the next few days her legs will feel better.

her g-tube site is (i think) getting better- still some granulation but she started a steriod last week to get rid of it- should see results w/in 2 weeks if it works.

as always, she's keeping us busy! hope this update finds you & yours well.

love,
jen

calming down

lauren's spasms seem to be calming down on their own (yeah!!!) plus we started her on a new medicine last night that may also help her spasms become less severe and less frequent.

a quiet week (hopefully) for lauren- just checking in w/the surgeon on thursday to keep an eye on the abnormal growth at the g-site. last thursday she met w/dr. jones (duffy's partner) and had more granulation tissue removed from her g-site. thankfully it was not nearly as painful as the week prior. hopefully this week will go smoothly for her.

we had to reschedule the hemo appt as two of lauren's three dr.'s were running upwards of two hours late each! we hope to see him soon for an update on her cbc count.

thanks for keeping up with lauren.
love,
jen

lauren's night

pls keep lauren in your prayers as she suffered through one of her worst nights of spasms since her peek this past january. not sure what brought on the intense and frequent hip spasms but she was bothered by them from around 11pm through 6am today.

on a bright note, her g-tube site seems to be healing and not causing her as much discomfort as noted by her willingness to "crawl" around the floor today- yeah!

needing sleep....
l,
jen

a rough time

lauren's g-tube site developed granulation, which is abnormal skin growth, that had to be removed on friday by her surgeon- an in-office procedure which consisted of burning the growth and cutting off the dead skin. she has been doing well during the day but at night she is experiencing a lot of pain. we'll be back to the surgeon's office next week to check that no more granulation is occuring but if it is the dr. will have to repeat the procedure.

we will also see her hemotologist on thursday to check on her macrocystosis and to discuss her B12 injections. hopefully that will be a good visit.

thanks for keeping her in your thoughts and prayers- she needs them.

love,
jen

results

lauren's mri findings came back unchanged which is good since there hasn't been any more brain atrophy or spinal lesions since her April mri.

the blood labs are normal for metabolic or mitochrondrial disorders and the muscle biopsy is still pending. great news and yet unrevealing as to what's up!

she has an infection around her G-tube (again, but different) and we're using a topical antibiotic to treat it... hoping that will work.

thanks for checking in w/our little medical mystery!

love,
jen

Friday

Lauren's MRI went very well and we hope to have the results by monday afternoon. she handled the IV and sedation medicines very well and is now home resting.

thanks for thinking of her!
love,
jen

an MRI on friday

good morning.... just wanted to share that lauren has an MRI tomorrow at AI Dupont. she will have twilight sedation instead of the full general anethesia. this MRI is to look at her brain and spine to see if there have been changes to her myelin since starting the B12 injections. hoping that there is documented evidence in her MRI of the changes we are already seeing in her behaviors- primarily motor re-gains and continued cognitive learning. if so, i will ask for more B12 with the thinking that if a little is helping, perhaps more would be better?

will let you know when i know the results. also, still waiting on the results of her latest blood tests for metabolic and/or mitochrondrial disorders as well as the results of her muscle biopsy.

with love,
jen

Home, again

ok.... so we were home for a week then Lauren had trouble overnight this past Monday and by Tuesday morning i knew we had a problem. We headed out to the ER tuesday morning and after a horrible GI study (done w/out any pain meds) the dr's determined that there were no structural problems with the G-tube itself, rather a nasty infection which required 2 different antibiotics and a couple more nights in the hospital. Lauren is home now and her belly is doing great. although i am tempted dip her in bleach to prevent another infection we are hoping that as she finishes out her 5 days of antibiotics (around-the-clock, thank you) that she will be clear of further complications.

phew! hoping we can rest for a while.... and thank you for your care & concern for little lauren & her fam.

l,
jen

Lauren

Happy 2nd Birthday Lauren!

Thanks for everyone's calls and care for Lauren and her fam over the past week. We really appreciate everything- thank you!

She is doing really well with the feeding tube. She seems a bit more tired than usual, but otherwise is the same as before. Hoping now we can get her gaining... will keep you posted.

Love,
jen & fam

Lauren is home

Jennifer and Lauren came home today. Both are doing well, in need of rest, but doing well. Thank you for your prayers.

Surgery Update

Lauren's surgery was a success. She and Jennifer are getting settled into their room. Thank you for your prayers.

Tomorrow's surgery time

Lauren's arrival time is 12:40pm (yeah, not the crack of dawn like times in the past!!) and she'll be in surgery around 2:15pm (assuming no emergencies).

will keep u posted.

love,
jen & lauren

Getting ready

so we're back after a fantastic vacation on the beach and every day was just perfect. i reminded myself to stay in the moment and enjoy the sun, surf, and my family because all too soon we'd be back. so here we are, preparing to bring Lauren into surgery for a very "routine" procedure so let's hope her's is as well.

no new changes to share- we go in on tuesday and she'll stay a couple of nights to make sure it's in right, she can tolerate overnight feeds, and that she starts to heal properly.

thankfully my mom is going to be with lauren and me in the hospital and our aunt carol is coming to help with ethan and grace. we appreciate everyone's concern and prayers.

i will blog the outcome asap but no news is good news, right?! so if it's takes me a few days and you'd like an update you may call our home- Andy will be there in the evenings.

thanks for checking in w/us.
love,
jen

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.