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.
***
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:
by Sarah | Oct 29, 2007 | SSI
This morning is our appointment with a lawyer about SSI. Yesterday, through the pain, I gathered up a list of all of the girls specialists and therapists and put them in a spread sheet (Yes, Jess…a SPREAD SHEET). I got together my SSI folder, and every possible thing they could need that my poor little brain could think of.
Now I hope I got everything…and I hope that they really don’t mind me bringing the two monsters…and lastly hope that the nasty hump of my shoulder and K’s shiner don’t make us too unseemly 😛
I will be posting later about the meeting and K’s shiner (with pictures!!)
by Sarah | Oct 26, 2007 | RSS
So now that we know some of the signs and symptoms of RSS..how does it affect us? How does it affect me, as a parent…and Molly, as a toddler? How can certain symptoms affect your life?
1. Hypoglycemia
- Can cause child to wake frequently at night, past a year of age
- Can cause extreme crankiness that’s eased with feeding.
- Produces ketones in the urine
- Makes it difficult to wake up in the mornings
- Excessive Sweating
Molly had all of these (well, besides the ketones…we never tested for that). When she was about 18 months (a year ago) she suddenly started waking just about every night at 2-3AM…MOANING. I had to feed her every night at 1AM for a very long time to get her to sleep through the night.
2. Lack of interest in eating
- Enter vicious cycle. Your child has a lack of interest in eating…it makes them eat little, which causes hypoglycemia, which makes you need to feed the child more frequently.
- You have to beef up the calories of every bite. Welcome butter, sour cream, dry milk, wheat germ, peanut butter (if allergies are not present), dry-milk…and the wonderment of DuoCal ($25 a can!! TOTALLY not covered by insurance! YAY!)
- The other vicious cycle – no interest in eating, but they have to eat, so you try to get them to eat smaller meals more frequently, so they assert themselves by refusing those meals, so you have to try to supplement more…and round and round and round!
This is STILL a sticking point for us. Molly is now a little more interested in eating…but I swear her stomach is the size of a peanut. After just two chicken nuggets, she’s full (that was her lunch today). She will still drink us out of house and home with the milk, though (chocolate only, please!)!!
3. Oral Motor and Speech Delays/Fine and Gross Motor Delays
- Therapy, therapy, therapy.
- Did I mention therapy?
That’s how we’ve come to have our life affected by this. Of course, on the flip side…some of these delays are enhanced in our case by the Autism. While most RSS children grow beyond these delays to lead ‘normal’ (we really use this term loosely in our house), healthy adult lives…we’re facing a slightly more difficult hurdle.
4. Physical aspects
Currently we have little repercussions for any of this. I know for my DH he faced a myriad of issues because of his appearance (he still doesn’t believe he’s attractive)…and he fears the same for Molly. I have to hope that how we treat the (relatively) minor physical abnormalities she’s facing will help determine how she deals with them. Me, I don’t notice these so much…because she is beautiful and they are rather minor…well, except she appears frighteningly skinny 🙂
5. Precocious Puberty
Yet another thing we aren’t facing currently…she is only 2.5 *lol* I have to admit…I FEAR the day that this happens…especially since we still aren’t sure about the severity of her autism. BUT…I suppose it’s something we’ll deal with soon enough (that is TERRIFYING!!!)
Those are the key ones I can think of now. If I forgot anything please feel free to nudge me and ask…I’ll be sure to add it!!
by Sarah | Oct 25, 2007 | RSS
RSS is short for Russell-Silver Sydrome. It’s also frequently referred to as Russell-Silver Dwarfism. But, the dwarfism (short stature) aspect of it isn’t a required symptom. Molly is anything but short-statured, but she has 90-95% of the other symptoms. It is almost always connected with SGA (small-gestational-age), or IUGR (intra-uterine-growth-retardation).
RSS is diagnosed by a doctor’s observation. At the moment, there is no lab test that can be run to make a conclusive diagnosis. It is a genetic disorder, but not yet tied to one specific genotype.
Some of the ‘symptoms’ or ‘red flags’ for this disorder:
- Consistently low weight-for-height measurements (FTT)
- Lack of interest in eating
- Body Asymmetry (this one is seen in MOST cases)
- Inadequate ‘catch-up’ growth during first two years
- Broad forehead
- High and narrow palate
- clinodactyly
- syndactyly
- cafe-au-lait spots
- dimples in hips and shoulder blades
- scoliosis
- prominent, low set, or backward rotated ears
- Underdeveloped chin and midface
- small triangular jaw
- Abnormally large head for body size (side effect of FTT)
- Arm span less than height (short arms)
- Poor muscle tone/lack of muscle mass
- Flat-narrow feet
- Short, stubby fingers and toes
- Unusually high-pitched voice in early years
- cryptorchidism
- hypospadius
- Bluish tint to the whites of the eye
- Intestinal movement abnormalities (Reflux, delayed stomach emptying/vomiting, constipation)
- Fasting hypoglycemia
- Metabolic Acidosis
- Delay of Gross and Fine Motor Development
- Kidney abnormalities (Horshoe Kidney, Posterior urethral valves, Renal tubular acidosis, Hydronephrosis)
- Delayed bone age early on, with fast advancement later
- Late closure of anterior fontanel
- Precocious Puberty
- ADD and/or specific Learning Disabilities
- Growth Hormone Deficiency
- Absence of second premolars
- Lack of subcutaneous fat
That is a rundown of the many symptoms that can be present. Tomorrow I will go into more of what it means for a child/their family growing up with RSS. How some of the symptoms can affect your life (night sweats, LD’s)…and how some are just purely physical manifestations that don’t affect your life.
by Sarah | Oct 22, 2007 | Autism
Every once in a while Molly comes out of her little world and stuns us. Tonight was one of those nights. She had a VERY long day, but still managed to amaze us, and her teachers.
She got up about 7:30 AM today (early for her, usual is about 9:30), and we fed them and took them for K’s feeding study (see below). Afterward we had to take Molly directly to preschool, without a nap. I thought I’d pick her up and they’d say she was a horribly unhappy child. I got told the OPPOSITE!! They said she was talking up a storm…even a couple of full sentences like “read a book” and “shut the door”!!!
Amazed, I took her and K and DC to DC’s parent-teacher conference where she was somewhat reserved. Got her home, laid her down for approx. 1.5 hours, and then got them up to get ready for Molly’s parent-teacher conference.
I don’t know when the aliens came and took my baby and replaced her…but whoever the child I had tonight was…OH MY GOD! She talked…and talked…and talked. And about 25% of it was intelligible!!! Real sentences. Real jabber sentences (involving pointing at me to get her point across)…jabber mixed with real words…”Look! Car!! *jabber jabber jabber* Look! Is wet!”
She stayed like that through her parent teacher conference all the way until we came home…amazing her teachers/threapists…and daddy!!! And ME!! Sometimes she is so amazing, it makes my heart swell!!!
by Sarah | Oct 22, 2007 | Hypotonia
We (finally) have SOME answers with K’s feeding issues! Turns out that what we’ve been told for months is WRONG!! Everyone kept saying her tongue lateralization (chew) was fine…and that something was happening with the swallow. It was how it looked to us all. Well, that was totally wrong. The reason why it looks like things were going down so rough is because…they ARE! K isn’t chewing! She’s sucking on the food, then swallowing. Apparently, her suck looks like a good round chew because she struggles with the suck as well. So, everything she’s been eating, she’s been swallowing whole! So we have to re-focus and re-double our efforts in a totally different way.
1. Don’t feed her a bottle first at actual mealtimes. Have her eat the solids first and finish off with a bottle.
2. Try high calorie yogurts and cottage cheese (with fruit for sweetness), etc.
3. Run our dinner foods through the food processor
4. Back off baby food as much as we can.
5. Work on using “stick” foods (cheeto’s) to try to get her to bite with her back ‘teeth’ (she doesn’t have teeth yet, but using that area).
6. Do NOT let her eat unsupervised (obviously)
7. Be aware that a “safe” bite size for her is the same size as the tip of her pinky…which, with K, is less than a centimeter, more like a millimeter.
8. Make sure that she’s getting at least one pediasure a day (she gave us a TON free…YAY)…but otherwise focus on solid foods so that she learns how to chew/use her oral motor muscles.
So. Those are a light dose of the tips she gave us. I’m SOOO glad we went. We go back in a month for a follow up visit. We’re supposed to have her weight before then (works out that she has her nutritionist visit right before).
It’s nice to have some answers!!!
