Forum: Our Special Kids

I just got a letter today saying that they are 'reviewing our SSI case to make sure we are still eligible". We have been getting SSI since July 2005 and have never been reviewed before. Could someone please tell me what this entails??? They just gave me a date and a time to call to talk.

My gut has been telling me some thing is off with Brooke...very unpredictable sleep, breath-holding spells back and I chalked it up to her antiseizure med change...now her night nurse tells me that last night she is convinced she was aspirating and couldn't handle her secretions for an hour. She has never aspirated before...she has had reflux get in her airway causing stridor and her lips to change color and coughing which results in clearing or gagging and vomiting to clear it. She has not...

After dinner tonight, I was getting Elijah ready for a bath and bed. He will be 3 in June, and his gross motor has been pretty much at a standstill since learning to cruise just before his 2nd birthday. So today, he was in the living room, and I had to get something out of the kitchen. I asked Benjamin(my oldest) to keep an eye on his brother - I was in the kitchen about 5 minutes when I heard "Mommy - come see Elijah!" I thought something had happened, so I started to go into the living room,...

So who already has a SN Trust set up for your little one? How hard was it to get it set up, is it an expense process to do? Do you have any suggestions to give to somebody who has not set up a trust yet?

My dad and sister were making a joke about "mild retardation running in the family" on facebook. Of course it *doesn't* run in the family. There are other ways to joke about forgetfulness or ditziness without using the word "retard". Then someone said "oh better not say that, Sarah Palin will yell at you!" I don't ever get onto people for saying it, but for people close to us, you'd think they THINK before joking about that! Now I know Charlie is smart in her own way, but she's still...

Are they knowledgeable about their cases? Do they just refer on for everything? Are they quick to say something is "nothing", or do they refer on for everything. I have had two peds offices, both were very well-child oriented. In general, I am wondering if I should be expecting a ped to be the casemanager of a SN child, or is this totally out of their realm.

Its been nagging me in the nether regions of my brain. How do the respite workers make a living making less than $10 an hour? I suppose for the respite care workers that do this part-time, they can take on another job. But what about the ones that does this 8 hrs a day? 5 days a week? Then the question of the quality of the care comes into mind. Does anyone think of this as well?

More of a vent, a release, or a sigh. Don't you hate that guilty feeling of always needing to *do* more for your non-mobile little ones? I don't think this feeling will ever go away unless I am side-by-side with Devon 24/7 making every move for her. She gets bore so easily and I feel so bummed because truthfully, I can't really do more. Its so heartbreaking when being non-mobile is a mainstay of your child's issues. I could deal with all else, even sz. But the lack of wanting to do...

I really don't know how to cope with some news that has come to light this week. Ryan and I had a parent/teacher meeting with Jessica's teacher and it seems like she is extremely behind in all her subjects. I mean pre-school level in almost all levels and she is in second grade. She doesn't know all her letter, she doesn't know hardly any of their sounds, she doesn't know vowels, she can do the most basic addition if she has objects to count, and she spends most of her class time in her own...

Do you receive emotional and practical support from your extended family? Practical support would be help with other kids, grocery shopping, going to appts etc. Emotional support is having them be emotionally vulnerable with you and a shoulder to cry on.

It seems like there's been a lot of talk lately about doctors, and it got me wondering--how many specialists do your kids see, and how often do you see them? I work full time, but it seems like I am taking time off work three or more times a month to take Doug to the doctor. We see: Cardiology--every 2-3 months for now, hopefully it will become every 6 months soon ENT--every 2 months GI--every 3 months Urology--every 3 months Neonatal clinic--every 6 months--this will end later this...

There is a little girl in Jackson's class, every time I go in to the school I see her picture up on the wall and I think to myself that she looks exactly like a girl who was in his class last year. She is never in the room at the time, and it always slips my mind to ask (and Jackson isn't saying;)). The reason why I was doubting myself is because Jackson is in a new school in a different district from last year. Today I got his class picture and I noticed her again. I had to go look at...

I got into a bit of a spat (OK, more like a big spat) with my SIL the other day. I called to tell her what has been going on with Eliana, that she was diagnosed with some delays and was going to be receiving therapy. She proceeds to tell me that the reason why Eliana is delayed is because she doesn't go to day care or a play group and play with other toddlers, and that she only plays with Elisa. She insinuates that Eliana and Elisa should be separated and even offered to take my (one year...

On the way home from Nicholaus surgery follow-up we got into a roll over accident. Nobody got seriously hurt but the van is totaled. What a great night. :1230: (a deer ran out in front of us) We are all sore and stiff. Nicholaus thought it was funny when we were upside down and hanging. I was of course terrified that he was hurt.

I don't know if you all remember that we fired the 1st one we had, because she was doing inappropriate things (on the phone a lot, sleeping on our couch, meeting up with boyfriend, etc...). In mid-January, we finally got another one and then had to wait for delegation. It was finally looking good and we really liked her. However, she decided to not show up to any of her clients' houses, including ours. She walked off the job with no notice. I wish the state would pay better wages, so...

I know nothing about this topic, but we are going to be learning about it in nursing school next week. I know with Nitara's tube feeding stuff, there's the textbook way, and then there's the real-life way. Also I know that people learn tips and tricks that make it a whole lot more practical and easier on the person being suctioned. Can you share your wisdom with me? :) Some questions I have: 1. When suctioning a trach tube, do you always use sterile technique? If so, how do you manage that...