What’s Next

[Anonymous]

Sounds great…. i think that someone took their child there for day program (from other board) will check later today…. the waiting list is not that bad, trust me… we have about a year at St Mary’s, which right now seems like the better option, although we are also considering Krieger, but are waiting for them to get back to us. Again, try to get evaluated earlier if you can (i know sometimes they say children qualify before 18months because they will get there cognitively).

Your insurance will surely cover some of it?? The thing for us is that the clinic in NJ is 100% covered because we are part of CIGNA… i have not asked at St Mary’s or Krieger’s yet but i think that my insurance will cover 65% out of network (but this is my husband’s insurance andd it is so great)… maybe one of the places is in network for you??

Please keep us updated… we called feeding clinic in NJ to reschedule and everyone is busy until July 15th… so i guess we will have to wait… and then we are going to spain most of august so i guess we are delaying things until September right now… but i think Matthew and i need a holiday!

BTW – did you ever have granulation tissue around CHristian’s stoma… we do and it sucks. If so, let me know how you handle it please….On a good note… i just cannot stress how much we love our ped. Yesterday we sent him an email asking if he would see matthew either today or this weekend because his stoma looked off and was bleeding…. he said it would prob be best to speak to GI office… but our GI is away and the people covering said that the ped shoudl take care of it… so we just drove to the city and went to ER at Cornell (they are usually quick and have separate ER for ped)… so we sent an email to ped saying we were there anyway and will have it looked at the ER… well guess what… 15minutes later, and this was 10.30pm at night… HE WAS THERE TAKING CARE OF MATTHEW!!! UNBELIEVABLE… he said he wanted to go to hospital anyway to check on a patient and wanted to take a look at Matthew… so he came, dressed the wound, gae us some stuff and saiid he would see us on sunday if things did not improve!!

[Anonymous]

Hmmm i guess this is all i found but interesting.

http://www.parent-2-parent.com/forum/showthread.php?t=43061& amp;highlight=happy+mealtimes

http://www.parent-2-parent.com/forum/showthread.php?t=43061& amp;highlight=happy+mealtimes

http://www.parent-2-parent.com/forum/showthread.php?t=38819& amp;highlight=feeding+programs

[Anonymous]

Yeah about your ped. I don’t think ours knows us from Tom down the street. It seems nobody wants to take a true interest in helping us figure out what is going on with Christian.

Yes we have granulation tissue. It is a pain in the butt. When he had the PEG g-tube the tissue would swell and get really red and painful each time that bumper would move around. We had the silver nitrate applied and he screamed for like 15minutes each time. I hated it. They finally prescribed an ointment called triamcinolon and we apply it twice a day for like 15 days – it helps to decrease the swelling and pain/irritation of the site. I would much prefer that over the nitrate. We also try to use the swimming pool (chlorine) helps to keep the site cleaner too I think.

Thanks for all your advice.

[Anonymous]

Laura,

I really do feel for you guys. Nobody seems to care about what’s going on with us either, so I can imagine how awful you feel. I can’t believe how expensive those programs are, but it does sound great. What do people do who can’t afford it? (We have public health care here).

Thais, I’m so glad to hear that your ped is so great. What a big difference it makes.

s&h’s mum2006-7-1 6:41:2

[Anonymous]

Laura

I am sorry that you feel like nobody is willing to help… WE DO! At least it seems like we are all on the same page on what needs to be done and you are on top of everything. I am going to put all info down on Kennedy Krieger just for future reference.

Lori

How is Sarah after the shots???

Some of those programs accept Medicaid (i know from some of the people in the other board). Yes, they are expensive!!! Most of them have Ronald McDonald houses next to them and that is where people stay for the length of the program.

I think i already posted on St Mary’s (Ie they told me eval is 2-3 months away and then there is a 10month wait or so to get in).

I spoke to Kennedy Krieger yesterday… they took down all my info. They told me that the age requirement there is ONE year, not 18months… they said that someone will call me next week (ie a nurse practitioner) to go over all the info i provided and possibly to have me send all the records. That will be a screening for their eval. She said that people that just qualified are getting into programs in september and october, so such a shorter waiting list!! She said to expect the program to be 8 weeks long but some people get discharged after 6 weeks. She reminded me it is a huge commitment on the takecarer that participates because the program is 9 hour days i think, 5 times a week and away from home (i guess not much people live in baltimore) and i remiinded her i have a tube fed baby at home who does not eat and does not sleep and cries all the time…. Anyway, we are hoping we qualify for eval…. Most people stay at the Ronald McDonald house and a few at the hospital (some children are referred to their inpatient program that is 7 days a week).

Key things they said: baby needs to be at least one, no big medical problems (Ie reflux under control, OK wiht bolus feedings, gaining weight on the tube, ie no dumping i guess), and she could not tell me anymore, she said the doctors mkae the decision.

NOw, we will just wait for the scheduling of St Mary’s and KKI and then hopefully we can make some holiday plans!! YIPEE.

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