02-25-2009, 01:36 PM
:) Hello, My name is Lynn and I am the mother of four including a beautiful little boy named Joseph. Joseph had the prenatal diagnosis of Jeune's Syndrome and I was told that he had about a 3% chance of life. Being such a little fighter, he made it to 35wks before bursting into the world. Joseph was intubated within 15 minutes of birth, and finally had his trach put it at the age of one month. (It was beautiful to finally be able to see his entire face). After spending a total of 8mos in the NICU/PICU we were discharged home June '07. I tried nursing services for about 3 weeks before I decided there would be much less hassle and frustration caring for him on my own. I have been his primary caregiver now for 18 mos and he is thriving. He is a very happy, social, energetic toddler(almost got walking down- currently "cruising" on furniture and walking toys). It is great to be able to communicate with others who are going through the same things as I am. There are so many issues that my friends and family dont understand - besides all of the "medical" issues, there is also the insurance issues, DME issues, tips on how to make things stay/ work better/ more comfotable that is really great to know that others have the same daily problems, and have come up with some really great solutions.