by Sarah | Nov 3, 2007 | Autism
Last night, for the second time in a week, Molly copied words!! Not to mention the fact that she’s starting to converse a little, and become more aware of potty-time (or at least willing to admit it)
Last week it was Daddy, and she copied him when he said “Happy”. The rest of the night she kept saying it. She hasn’t said it since (common for her), but it was still a copied word!
During the week I saw her go behind the couch, and you could obviously see her straining a bit. I said, “Are you going potty?” She didn’t answer, so I repeated, “Molly? Are you going poopy?” She looked up at me, obviously done and said, “Yeah!! YUCK!” *lol* Again…it wasn’t repeated, at least not yet, but it was a joy.
Last night we were “talking”. She was doing GREAT reading a book and matching objects in it (amazing the heck otu of me)…and I could tell one of the girls filled their diaper. I asked M if it was her and she shook her head vehemently no. I said, “Molly? Are you SURE?” She looked up at me with a big grin and sounded like a true New Yorker, “Shooo-ah!” I laughed, said it again, “SURE?” She gigglied, “Shoo-ah!” It was so cute!!
by Sarah | Nov 2, 2007 | Autism
Well, after today I’ve decided I can no longer attend playdates *sigh* Why? Well…let’s see.
Last month I went to a playdate (finally…I rarely get to with our schedule, etc.)…Molly spent almost the entire 2 hours at my side.
Today, same playdate, same situation, except I wasn’t there (appointment at the chiro’s…check Side Dishes for that info). She PLAYED! With OTHER CHILDREN! (well, one…but still)
*headdesk* I want to go and be able to talk to the Mommy’s and…and…*sigh*
Joy.
by Sarah | Nov 1, 2007 | CF
The “funny” thing about K’s CF.
If she hadn’t developed a cough last year…we’d still be in the dark. Her lung functions are great (currently), she has some nasty BM’s…but not on an overly consistent basis (Not every BM is nasty)…She has FTT…but that could be passed off as either genetics or her hypotonia/inability to chew.
And even funnier? Last years cough never became ‘pneumonia’…it seemed more like some minor baby asthma to the pulm. A little bit of wheezing…but no rattling in her lungs…nothing like that.
A bronchoscope and seven sweat tests later…I’m now terrified for the cold and flu season to arrive. DH and I sit on eggshells worrying over our first real experience of her being SICK with CF.
Looking back, she got “sick” a few times last year…but it was always minor fever with a rash. Dr’s always dismissed it. Now each little favor has such a bigger impact…and it shouldn’t have to be that way…but it is.
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by Sarah | Oct 31, 2007 | CF
I just received this in my mail box and wanted to pass it on! Help raise money for a cure! And get some Holiday shopping done!!
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Dear Friends,
Just in time for the holidays, we’d like to introduce our 65 Roses® Collection Store where you can shop for gifts and—at the same time—support the mission of the Cystic Fibrosis Foundation!
This special collection includes monogrammed blankets, umbrellas, wraps, personalized coffee mugs, and even piggy banks!
Click here to check out the collection and order your items today! Or, you can make a tax-deductible donation to the CF Foundation, if you wish.
As you may know, “65 Roses†is what some children with cystic fibrosis call their disease. But, making it easier to say does not make it easier to live with. You can help change that! By selecting gifts for yourself and loved ones, you will be showing your commitment to helping find a cure for CF.
Thank you for supporting our lifesaving mission. Together, we are adding tomorrows every day to the lives of those with CF.
Sincerely,
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) 347-2345
E-mail: DirectMarketing@cff.org
Web: www.65roses.cff.org/Shop
P.S. To help increase awareness of Shop for a Cure and the important work we do, please feel free to forward this message. Thank you for your commitment.
**To ensure delivery of gifts for the Holidays, please order by November 8th.
by Sarah | Oct 30, 2007 | Early Intervention, Therapy
One thing I am is a huge supporter of Early Intervention (EI). With EI your child can get all the help he or she needs NOW, and in many cases, free. If your child has a significant delay in one area, a little help now can mean a LOT for their future. If it weren’t for EI, Molly wouldn’t be making the progress she is now…she probably would not be considered high-functioning at all. K might not be walking without the exercises we’ve learned, and her weekly PT sessions.
That being said…one of my biggest pet peeves is people who worry about their child’s development, but then sit back and do nothing. The easiest thing you can EVER do is say to your pediatrician, “Hey…I’m a little concerned, can we call EI and have an evaluation?” The WORST that will happen? EI will say, “He/She needs therapy.” You don’t HAVE to do it, but it’s there and available IN YOUR HOME, or IN THEIR DAYCARE!!!! WOW! The best thing that could happen is the (experienced, mind you) therapists will say, “She/He seems to be developing normally…”
So what is the HARM in just checking if you ARE concerned?!?!?! Instead of sitting there fretting…waiting for soothing words from friends and family…Take the step and get an eval!!! It’s painless, your child gets to play while you answer a couple hundred questions…then the therapists play with your kid!! You can always REFUSE therapy if you want!! But at worst, it will be suggested..at best your mind will be put at ease!!
So get off your butt and ask your ped if you’re concerned…don’t lament delays if you aren’t going to do a damn thing about it!
by Sarah | Oct 29, 2007 | SSI
Let’s do this in order. The lawyer…well, it’s good news, bad news, bad news.
1. Good – She’ll take our case. Specifically, she’s taking K’s. She offered to take Molly’s too because I was “so nice” and she could “Tell what a struggle this has been for us.” She did explain why she thinks they turned it down and pointed out that, as we have seen, at this stage of the game they aren’t too particular about getting up to date info, etc. She said I could do the appeal and come back, or let her take the case now. She’s taking it now. We mutually decided to not to Molly’s because her case was even more muddy and unsure than K’s (yes, K’s is muddy because while she has CF…her case isn’t “serious” at this point so it’s not so cut and dry).
2. Bad – She’s predicting that it could, quite possibly, have to go to court…and that over time it will take us 18-24 months to get anything. 18-24 months…and to top that off…
3. BAD – I shouldn’t get a job. Financially we are borderline for qualifying. If I get a job…we no longer qualify. I’m supposed to call SSI to verify this…but she’s pretty sure, even with a 5 person household we are right there.
So, we have representation and we can only PRAY that SSI takes a better look at our case this time because we have a lawyer…otherwise we have a very long, very poor road ahead of us. BUT, I really liked the lawyer. She was very nice and I could tell that she really felt for us and our case…and that gives me confidence.
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Onto K’s shiner. Yesterday afternoon during the heighths of my pain, K was walking around playing. She was playing by the bookcase (Yes, Jess…the bookcase that hurt their toes)…trying to take the books out (despite my telling her no). Well, she had a spell of weakness, or slipped on her pants (they were a little long), I’m not entirely sure what happpend..but she ened up on her knees…hitting her eye into the corner of the lower bookshelf. Luckily it was the corner, the eye socket, so no internal damage…but this is what it looked like last night:
