Owner: Redefining Perfect URL:http://findingperfect.blogspot.com Join Date: Thu, 25 Oct 2007 17:54:59 -0500 Rating:0 Site Description: A blog about raising special needs children and the unique challenges faced. From therapies to doctors to playtime...finding "perfect" in a life you never expected for them or you.
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The Pain in my Neck... 2007-10-27 22:57:00 It's not the kids or the husband...or maybe it is...I don't know. It started two or three weeks ago...I slept wrong, woke up with a crick in my neck. Since then it has slowly started to grow...and get worse...to the point of me waking up today, so bad that I sent DH to get bengay and he spent the afternoon rubbing my neck with the stuff. I had to back out of going ot a Halloween party (not terribly upset about that...I dont' care for costume parties)...and push him out the door to go. Now I sit in quiet (yay for quiet), suffering a bit. Sitting here hurts, so I am keeping the post short. I may not post at all tomorrow...but I'll be back Monday for at least a short post!P.S. At that time I will be posting about something that REALLY gets under my skin (and the related something that I'm a HUGE advocate of - Early Intervention)
How RSS affects you... 2007-10-26 18:13:00 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 ageCan cause extreme crankiness that's eased with feeding.Produces ketones in the urineMakes it difficult to wake up in the morningsExcessive SweatingMolly 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, Read more:affects
Bumbo Recall 2007-10-25 17:26:00 Over 1 million Bumbo
Seats recalled!Basically these Bumbo seats are being recalled because of a handful of stupid people that put their babies in these seats in high places. Babies, curious in nature, lean over and fall down...several have ended up with skull fractures.So, in essence...bumbo seat - GOOD...people - BAD.So, millions of children that have foudn relief from reflux thanks to these seats will be robbed of such goodness because of a few people that didn't think before placing their Bumbo seats at a height.
What is RSS? 2007-10-25 12:59:00 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 eatingBody Asymmetry (this one is seen in MOST cases)Inadequate 'catch-up' growth during first two yearsBroad foreheadHigh and narrow palateclinodactylysyndactylycafe-au-lait spotsdimples in hips and shoulder bladesscoliosisprominent, low set, or backward rotated earsUnderdeveloped chin and midf
AMAZING Day!!! 2007-10-22 21:10:00 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 ab
Some answers... 2007-10-22 11:16:00 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 processor4. Back off baby food as much as we can.5. Work on using "stic
Paycheck to paycheck 2007-10-20 08:50:00 This entire article is exceedingly true for our family. We haven't started going to the food pantry yet...but it has been in my thoughts. Wal-Mart reducing it's prices are about the only thing keeping us (somewhat) afloat right now:Groceries paycheck to paycheck
She bit me!! 2007-10-18 11:56:00 It doesn't happen often. Most of the time, Molly's meltdowns consist of her internalizing and curling up on your lap until she feels safe again. Sometimes, though...her meltdowns are ugly and angry and violent. Today was one of those days. She was up and about during her sisters PT session today, which I usually try to avoid for the jealousy issue/mixing therapies. When one child is in therapy, I want the focus on them. But, we were all running a bit behind today, so Molly wasn't ready to climb back into bed. Sooo, she was up and about. Then she slowly started going into a meltdown. I sort of saw it coming...but thought we could nip it in the bud by letting her back in the living room to play with her sister. Instead she really started going. Screaming, fighting. So I picked her up to carry her back, get her changed, and put her in bed. Halfway there, she bit me. Hard. On the boob. She managed to break the skin, but not draw blood. I'm going to have a pretty bruise
SSI update 2007-10-17 20:37:00 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
Full calendar 2007-10-17 12:17:00 We had peace and quiet for two months. Now our calendar is filling again. REgular CF Clinic appointments, well-baby checkups, and the like are always present. Now our appointment with the Orthopaedic is set for Dec. 4th, and K also has a feeding study scheduled for next Thursday. We did attempt to feed her solid foods again this weekend, just to see if she's managed to improve again. It was a dismal failure. After ten bites/swallows...she started reacting as she always does. Now we just have to hope that she displays this for the Speech Pathologist(s) at the hospital next week. The OT is making notes of her observations so that I can take them with me as well. Later today...a post about RSS.
Not disabled enough... 2007-10-13 18:11:00 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.
"You're a bad girl!" 2007-10-12 21:44:00 K just shocked the you-know-what out of Erik and I tonight!!! I got them up to eat and she threw a holy fit, refusing her new sippy cup and throwing herself down on the couch, etc. So, Erik took her and put her in bed. The In-laws called and we chatted for a bit, I transferred K's milk from sippy to bottle...and we got her back up. She was all smiles, saying before I even got her out of the bedroom, "Daddy...Daddy...DAAD." (she never says Mama, mind you ;) ) Anyway...she eats and starts playing...She starts taking a DVD case off the end table. I tell her no and put it back. She goes to take it again, I take it from her hands and tap them lightly with the case and say "No...Bad."Erik pipes up and says, "You're a bad girl!"Clear as day, she says, "No I'm not". We just busted out laughing....and then not three minutes later she walks up to Molly, whom had taken the Dora K had been playing with and in a string of words said, "No *babble* Dora mine...BAD!" *giggle* She's amazin
A GREAT pediatrician 2007-10-12 12:50:00 I've learned over the past ten years that a great pediatrician makes ALL the difference. A poor one, one you don't trust, and a down-right indifferent one...well, it makes all of life miserable. When my son was born I found a GREAT one...in Virginia. Six months later we moved. Found a 'good-slightly indifferent' one in Maryland, that was actually a GP. Then we found a great group of peds...but ended up moving a few months later again. Came here, found a LOUSY group of peds...then what I thought was a great ped, that became indifferent over the course of four years until I actually stopped trusting him.Now we have a GREAT pediatrician. We, quite literally, found her by accident. We'd planned on going with a highly reccommended ped...that wasn't affiliated with our local hospital. He reccommended a local ped for when K was born, and we'd transfer to him. Then, hubby's work changed insurance, and we learned that the ped we wanted wasn't in network, and didn't take medi
A Mom's Bloody Nose... 2007-10-11 18:03:00 It's my fault. I admit it. But, I haven't had a bloody nose for quite some time (I think I was maybe 10 the last time I had one). Tonight I got a mom version of a bloody nose. Molly and I were rough-housing...just goofing off on the couch. It's her newest thing, she likes to hit me...and so to keep her from getting smacking me in the face (NO is very ineffective), she gets tackled to the couch and tickled. It keeps her from jumping on me, and we both get a good giggle out of it...and it has the wonderful effect of tiring her out.Well, in the course of playing I learned a valuable lesson...Molly's fingers are the perfect size to go right up my nose.Yup...it hurt, and scratched/damaged the inside. It was bleeding pretty good, and I was in pain for about 30 minutes...I'm still rather uncomfortable about 90 minutes later. Needless to say, I'll be much more careful next time we're roughhousing.
I was afraid it would happen. 2007-10-11 12:23:00 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 was Read more:afraid
I have a cold. 2007-10-11 10:45:00 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.
Preparing for change... 2007-10-08 12:27:00 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!
Cystic Fibrosis 2007-10-07 16:00:00 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 t
It's not contagious! 2007-10-03 15:28:00 An event that happened two months ago still bothers me today. And now that I have this blog, I want to bring it up again. A common misconception/fear about K's illness is that it's contagious. I'll say it now, Cystic Fibrosis is NOT contagious! It's a genetic disorder. Two carriers have to come together to create one full CF baby. You can't get it by casual transmission. This still bothers me today. Because two months ago M had her speech therapy session at the park (the therapists idea). While she was playing with her ST, I took K around and let her play, etc. I put her in a baby swing and was swinging her gently. Another mom with a baby a bit younger, but quite a bit bigger than K got on the swing next to me.We talked for 10-15 minutes, swinging our girls. It was a nice conversation. We laughed, we went through how we became SAHM's, our "surprise" babies...it was nice. I was thinking that she was so nice, and we seemed to have a bit in common. Then she mentioned
The bright side 2007-09-28 21:13:00 Today is a day for looking on the bright side of things. It has been a very rough week for me in many aspects, so instead of a post specifically about autism or CF or any of my girls 'problems'....I decided to focus on the good. M is extremely intelligent. Her cognitive functions are off the charts. You can lay out ten wooden puzzles and give her one piece and she can put it in the proper space within thirty seconds.K has a smile for everyone. She could be screaming and crying in discomfort during PT...and turn on a smile for her therapist in no time flat once the 'work' is over.M has made leaps and bounds in her skills. She amazes us every day.K's language is developing so fast I can hardly keep up! M's first two days of preschool went so well, all my fears are relieved!!K's lungs have sounded perfect at her last two CF clinics.M's hair is growing in (finally) and she LOVES for me to put it up (I love to do it :D)K has the funkiest dance moves ever.That is it for now...
Autism is not criminal 2007-09-26 09:07:00 I am happy to report that the charges against the six year old autistic boy have been dropped.Charges DroppedThe school is, of course, refusing to comment in order to "protect the child's privacy". A bit too little.The parents are thinking of civil action, and in this case I think I agree with them. As the public defender, Amanda Mullins said, "It's not an issue of assault. It's an issue of a school being unprepared to deal adequately with a child like that." Ain't that the truth. Read more:Autism
Learning while Playing... 2007-09-24 20:43:00 Seeing all the toys the therapists bring always makes me curious on appropriate play and toys for the girls. So, about once a week I go perusing websites that have sensory play based toys. Usually the equipment is crazy expensive, but sometimes you see some items within reasonable reach. I really go primarily for the ideas. Many common Sensory play items can be recreated. Some basic ideas I've come up with....Tactile play is easy. Set out four bowls. Place four different textures in each. Rice, rotini pasta, sugar/salt, and (this can be messy) jelly. Four varying textures to explore. Rice or beans and rotini pasta are really great for opening the senses. Get brushes of varying textures/bristle strength, and let your child explore those - but this is something to take slow.Fabric has wonderful varieties of textures. Satin, wool, felt, cotton...all varying. Make a bin full of different fabrics and let your child explore each one.Remember feet are as important. Let your chi Read more:Learning
Night and Day 2007-09-24 08:11:00 My girls are like night and day with their disabilities. K's weaknesses are M's strengths, and vice versa. So, despite the fact that 9 years ago I had a son that developed "normally"...it always surprises me when one of the girls does something developmentally sound. Yesterday was one of those days.I was sitting on the couch while the girls played when K struggled her way up onto the couch, crawled up to me and pointed to my pajamas. "Kitty-cat." I blinked and looked down in surprise, had she just said kitty-cat? So I repeated it and said, "Yes, that's a kitty cat." (they were all over my shirt). A few seconds later it was repeated, "Kitty-cat." Yup, out of nowhere and with no previous prompting from me, she said kitty cat!! I think she learned the word from her speech therapist, who has a puzzle with a cat in it. But to translate it from the puzzle (with a blue cat) to my shirt just amazed me!!In other news both girl are walking around saying "NO WAY!!" It's the most ad Read more:Night
Criminal Autism 2007-09-21 20:06:00 I was directed to this story of a six-year-old boy with Autism
that has been criminally charged with assault. 6-Year-Old Autistic Student Criminal
ly Charged After Alleged AssaultThe only thing I can think is what my DH said. "The school took responsibility for the child." If the school, and it's teachers weren't prepared for a special needs child, they should have said as much. A school shouldn't attempt to integrate a child if they have no business doing so. And the aide that charged an autistic child with criminal assault should be ashamed. I can't even comprehend how the parents feel.
Health Insurance 2007-09-19 09:03:00 Every parent whose child has special needs worries about insurance for their children. We "have" health insurance...but my husband works for a small company...and because of "rising costs" and "bottom line" the insurance they offer...well, it SUCKS. We are required to take part now in their HSA insurance...there is no longer the 80/20 of standard insurance. We have the "Benefit" of a low-premium, high deductible insurance package. For a single man in his 20's...this is a GREAT plan...you hardly ever get sick, what difference does it make? For a family of five on a very limited income, with two children that require special services...this is a horrible plan. Our deductible is $6000. Considering one visit to a specialist costs anywhere from $500 to $900, how can a family on a limited income live with such a thing? So...we apply for medicaid to help cover medical costs...but since we have "qualifying insurance coverage" on the girls...even though our income meets their levels...w Read more:Health
, Health Insurance
Shop for a cure 2007-10-31 13:30:00 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!!*** 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 ever
No OT for a while! 2007-10-31 09:22:00 Well, K won't be having OT for a while. Her OT called me today to cancel today's session because...she had her baby! She had a little girl on Monday. While this is wonderful, and I'm very happy for her...this also means that K won't be having OT for a while. We still haven't been able to locate a temp OT to fill in until the end of January when this one returns!! So, until EI finds one for us...we're down one therapy session a week!
New commenting rules 2007-10-30 13:54:00 I have new commenting rules set up!! I have now allowed non-blogger members to comment! Those comments will be moderated, but I'll post any non-flaming, non-spam comments!!!
Early Intervention 2007-10-30 12:19:00 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
Excuse me... 2007-10-29 14:01:00 Excuse the dust while I try to get this bloody thing set up. I keep playing with the templates and every time I do, it takes blogger forever to catch up with me...I don't think it likes all the codes I'm putting into my side bars ;)ETA: I'm getting really ticked off that my ticker and sidebar codes aren't appearing on my blog!!! They are all there and accurate...*beats blogger* Read more:Excuse
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