Just want to give you a bit of an update on what has been happening for us and to once again send a huge thank you and a pile of hugs to everyone on this board for being such an amazing support!!! I received several packages of trach supplies---and you have all been in my heart each and every day---just really sorry I haven't sent out proper thank you notes yet!!
We finally moved into a place of our own August 1st and are continuing to get services into place here in Toronto. I am amazed at how much work there is---paperwork, phone calls etc---involved with navigating special needs and medical care in Ontario! Yikes--the pace is really hectic but hopefully will slow down soon. Here are some of the highlights:
1) Well I guess in addition to the earthquake in Japan, 2011 is just going to continue to be a stressful year!! Without going into all the drama and details here--am now also a single parent---so the challenges are intensifying! Any tips on how to manage everything--money, child care etc? EEEEK! I have a three year old (trach/gtube) and a one year old so it is really hectic!
2) Now have some home nursing hours---but definitely struggling to adjust!! It is great to have the help for the first time (no nursing suppport where we lived previously in Japan) but I find the invasion of privacy really tough. How did you decide on the right number of nursing hours? Maleek is fairly stable and active and really resistant to medical interventions---and just becoming more unruly and uncooperative as we introduce more nursing!! So in a way the nursing is making things harder!! Anyone else have any comments?
3) Nursery school for trach kids in Toronto!!!?? So far have been told that no nursing is available for trach kids under age 4 (or outside of the regular school system)! Maleek also has a severe hearing loss so really needs to be in a sign language nursery program. Anyone else struggling to get a trach LO into a nursery program before kindergarten? Will prob post on this again separately as it is such a big and frustrating issue!!
Anyways-hope you have all had a great summer and look forward to being on here more often now that I have a home and internet access!!!
Mom to Maleek-laryngeal hypoplasia, subglottic stenosis, GERD, Gtube, my happy, active 2 year old mischief maker, Canadian-Ugandan born in Japan June 18, 2008
Mom to Latif-our newest Canadian-Ugandan born in Japan, August 17, 2010