by Sarah | Oct 17, 2007 | SSI
Well, we got the second denial today. The one for Molly (as we were expecting it to be). This time, though…all I could do was laugh. They claimed that the medical evidence supported a good rate of growth currently (not a total lie, I suppose)…but then it said that there wasn’t any problem with her communication and that she was 100% intelligible!!! WTF? I don’t know HOW they got that, since she said NOTHING during the Speech Evaluation…and I certainly never said anything like that in response to the questions she asked me!!
I have called a lawyer and have an appointment on the 29th to find out if either case is viable and if they’ll take me on. Keep the fingers crossed!
On another bad note. K had her nutritionist appointment today. She has lost ANOTHER 7 oz (after losing 8oz last appt). That’s one pound in two months. She can’t eat anymore except liquids and baby food…the poor child is starving. I don’t know what they’re going to do.
On that note…in the good realm, the feeding study has been moved UP to Monday thanks to a fluke w/ scheduling!! So, Monday we have our feeding study…hopefully they can tell us SOMETHING!!
by Sarah | Oct 13, 2007 | SSI
We got one of the two SSI decisions in today’s mail. The government has decided that my daughter is disabled…but not enough to receive assistance. She sees 5 specialists, can’t eat properly, and receives regular speech, physical, and occcupational therapy…but she isn’t disabled enough for us to get assistance for her. I was blown away. I am also broken hearted. I swore that if they turned her down, I would fight it, appeal it…but we can’t afford to wait. It took them five months to come to THIS conclusion. We have gone through every last penny of savings…we do not have the money to go through a lengthy appeals process. They won. I feel completely defeated. I have to go get a job…so that we can pay our bills.
I expect Molly’s decision any day now…and my optimism is gone. The eternal optimist is no longer.
I never thought I would feel this defeated this early on.
by Sarah | Oct 11, 2007 | Hypotonia
We’ve been asked to get a referral for yet another specialist for K. This time for an orthopaedist.
Today we had PT for K. During the session, I don’t know why I thought of it, but I grabbed my cell phone. I showed her a video I’d taken about two weeks ago of my girls. In it, you see many of K’s issues presented rather boldly. She places her left foot poorly and falls to the ground. She struggles to get up because her left leg is in the air and she doesn’t have the strength to get the leverage. When she does get up she walks to the camera, and then away…and you see her ‘drunken sailor’ gait and how she doesn’t walk in a straight line. At the very end, you see her chase M right up until she stops short before walking on a blanket (an uneven surface).
I found out how good I’ve become at detecting her issues because without a word from me, the PT commented on everything I saw in the video. She became really concerned. We started talking about the issues that she wasn’t resolving, and how she’s smart enough to learn what hurts/makes her work enough to refuse to do it when she sees the toy again…but she can’t seem to pick up on things like proper distance to an edge of a step, or stepping down without turning her foot in, or judging proper step distance.
She has reccommended a vision check. We don’t think there are any issues there, but we want to rule out poor depth perception as a cause for a few of her issues.
Then she reccommended the orthopaedist. She said that he “may” say that it’s solely a strength issue and tell us to continue with the strengthening exercises. BUT, that he may reccommend braces. We’ve expected, and feared, this. All we can do now is make the appointment and hope for the best…but I can’t tell you how I’ve worried about having to make this call. More so than I was concerned about the neurologist.
by Sarah | Oct 11, 2007 | CF
And honestly…this is the first illness in the house, beyond allergies, since K’s diagnosis. As the first official illness…and one that could translate into lung issues…I am admittedly a bit freaked out. Eventually it will become old hat…but I’m avoiding my own daughter in concern for her developing a cough. Every time I go near her, I use the hand sanitizer first…but I can’t use that on my face. I’m one step away from getting a mask from the garage so I don’t spread it when I pick her up…she’s such a snuggly, kissy thing…
So today I do battle with my own fears on top of the cold. I don’t want her sick…but I know it’s unavoidable in most cases. I’ll take my precautions and hope that it’s enough.
I’m thinking of getting hand sanitizer to place all over the house…getting us in the habit of using it all the time…but then I worry aobut using it ‘too much’. Catch-22’s here we come.
by Sarah | Oct 8, 2007 | Autism
One of the hardest adjustments I’ve had to make is the preparation for change. Being that M is only two and a half, explaining to her upcoming changes isn’t so easy. And they are sometimes unexpected. So, instead of preparing her right now, I have to prepare myself.
This weekend we got ‘new’ furniture. From my parents we got a three-piece entertainment center. It’s not a huge change, we had an entertainment center…so we just swapped out the middle piece…but then the two side pieces were put into the room as well. One of them replaced a toy chest/diaper cabinet of hers.
Yesterday in reaction, M had a bad day. Slept a lot, when she woke up was crabby for some time. She came out of it alright in the end…but I was ill-prepared for the adjustment. Wasn’t even thinking about it, really, until it happened.
Note to self…from now on, prepare for change. And as soon as M is old enough…prepare HER for change!
by Sarah | Oct 7, 2007 | CF
What is Cystic Fibrosis? The technical definition, according to the CFF website is as follows:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
But what is it to a parent?
When we got the diagnosis we got the cold rush of fear to our belly that no amount of “It’s not a death sentence” and “many people with CF live into their 40’s” could settle. Our pulmonologist is incredible. She’s one of the best in the country, and it’s so reassuring. We have a whole team on our side, and right now K’s lung functions are so good, and she sounds so clear compared to six months ago…
But no amount of clear and happy checkups remove that fear. It’s always in my belly. I can push it aside most days, but there are times that I look into her bright and happy big eyes and I wonder how long she truly has. How I’m so thrilled that she’s such a happy child, because I know she’ll enjoy her life for as long as she lives it.
You hold out hope for a cure, for your child to live longer than you…but in the back of your mind you hear the stories of the 9 year old that lost her fight…or your coworker’s wife is in the ICU…her youngest child only 2…and she can’t even go home and play with her. They each worry you.
The goal is to not let it rule your life…becuase you will never lose the fear of outliving your own child…EVER.
