hi everyone. we're going to see the doctors in new jersey January 17 - 22. if theres any families that live around that area and would like to met. we'd love the opportunity. last year we met an irish family but we didnt keep in contact.  were staying in camden all  week and seeing dr. K in ny on thursday the 21st. 

hey tiffany

my husband and are have been talking and camden nj is about 6 hours from where we live in Nh and new york is about 6hours as well and my husband has off a couple days you will be in Nj so it might be a possiblity that we will make a few day trip and get a hotel there and meet miss lilliana ans your family ill deff keep in touch but if you do want to talk more you may feel free to call my husbands cell phone and talk to him or i 603-505-9054 but me and my husband are up to meeting family we have plans in febuary to meet 2 familys in Massachusetts as well but deff keep in touch

god bless Heidi

hello tiffany

my husband and i are going be booking reservations as soon as we get intouch with you were looking at a place 9miles from camden my husband works at a hotel so that was the closest one he works at but we just want to confirm with you when your availible to meet up were trying to book it for tuesday to thursday and leave thursday night so if you dont mind giving me or my husband paul a call as soon as you see this so we can get our reservations and confirm when we will see miss lilliana and the family the number to reach us is 603-505-9054 its my husbands cell phone

thanks heidi

our trip to new jersey went well. 

 thank you heidi for meeting us.  we just love your family.  i think lilliana misses paul.  when we ask her about him she gets all excited. 

sunday our flight got in. monday we went to see dr assadi and she didnt seem that impressed with lillianas progress even though we were excited that shes responding a lot more. and she was thinking she might take lilliana off the lithuim because of the thyroid could be affected and she didnt think it was helping. Tuesday lillianas mri went well. the dr was concerned about her noisy breathing and didnt think we should just sadate and wanted to reschedule it so they could put her out but then they just sadated her anyway.  after the mri her chest was tugging alot more than usual so they gave some med that made her have tremers or something. that was a little scary. but everything turned out. wednesday we spent the day with heidi, Paul , paul, and harleeGrace. thursday we had an appointment in ny with dr kolodny but right when we got on the train his office called and wanted us to reschedule for next week because he was sick so dr leone told us to just go back to the ronald mcdonald house so we did then 1 1/2 hrs later his office called back and told us to just come and a different dr would see her. well we were in camden (it was 1:00)and the appointment was at 2:30 so we couldnt go. and friday we came home.

we got the results of the mri and she grew myelin and didnt lose any.yay for lilliana. we will continue with the lithuim, amoxicilin, calphron,acedazalomid ans the vitamins (canavan cocktail)

tiffany

thanks for letting us meet with you and your family it was great paul loves lilliana every time we mention her name he gets happy febuary 23-25 we will be going to see dr leone and dr assadiand get there mri's they will be going on the lithuim and supplements i hope all goes well ill keep you updated but deffinatly keep in touch we have your number and you probably have ours call anytime

hope to hear from you soon

heidi,paul,harleegrace and paul