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May 1, 2003
Jaida’s Sensory Diet
Contrary to what it sounds like, this has nothing to do with eating. Last Friday Debbie gave a handful of copies pertaining to sensory treatments that we would need to start doing at home. I was familiar with some of them from Jarod’s therapy so I wasn’t too surprised. What did surprise me was the daily schedule that Debbie wanted us to follow. I copied it straight from the sheet she gave me:
AM Wake Up- Get child up, Brush (I’ll describe that one later.), get dressed, speak softly and play soft music, have breakfast, leave child alone for a while. Let her hold a heavy backpack on her lap on the way to school. Brush before going into school.
Mid-Morning- Physical work such as sliding, swinging, and playing vigorously.
Mid-Afternoon- Brush child when s/he gets home from school, give physical work to do.
Evening- Brush and joint compression while naked, bathe, use a rough beach towel to dry, wrap in towel or heavy robe, use warm unscented lotion to give heavy pressure massage, low noise in background.
PM Sleep- Bounce on bed, pushing down on shoulders/hips, do push-ups, sit-ups, etc. During this time sing a 4x4 rhythmic song (Jaida’s going to sleep right now, sleep right now). NO TICKLING
Bounce on the bed and roll, keep singing, slowing the pace
Begin pressing down on her and squishing her
Pack the bed with stuffed animals or body pillows (packing them in the center), tightly tuck the blankets and put one of Mom or Dad’s dirty shirts in with them. Say Good night!
Now for the explanations that I know you are waiting for. The brushing she is referring to is part of the Wilbarger Protocol for Sensory Defensiveness. The rest of it, I don’t know but I’m sure Debbie and Jennifer went to school where somebody taught them this was how to fix Jaida’s sensory issues. Anyway, after the brushing I have to compress her joints and it is crucial to never skip this step. I remember that much from Jarod’s early OT experiences. Also, during her bath I should let her play with a drinking straw to practice blowing bubbles in the water. Her breakfast should be something crunchy but with her allergies, wheat bagels and toast are out. She doesn’t like the gluten-free cereal I got, so I haven’t quite figured that one out yet.
Debbie also wanted me to do a facial and oral stimulation on Jaida before every meal. How am I supposed to do that when she’s at school? At the next session I may ask her just that. I’m supposed to use a rough towel and rub down towards her mouth in a clockwise circle on her entire face. Then I have to put my finger in her mouth to stretch her cheek pockets and rub her gums briskly. I told her I would use a toothbrush and she said that wouldn’t work. There is so much more that I should be doing but always seem to forget. Jaida sometimes eats her breakfast in the car, what do I do then? Of course I keep that to myself because I have learned from dealing with Jennifer that I am expected to do everything they say or they think the treatment will not work. They don’t have a clue what other factors I have to deal with so I won’t bother telling them. To them it sounds like a bunch of excuses anyway.
If you would like to read more about Sensory Integration Disorder and the latest treatments, go to www.sinetwork.org and there will surely be more than enough answers to whatever questions you may have.
Jarod’s Terrible Two’s
I can only explain Jarod’s recent behavior by calling it the terrible two’s. If we take something from him or he otherwise doesn’t get his way, we can expect to hear crying for at least 15-20 minutes. Not only is this frustrating but it is very nerve-wracking. His little fake crying drives me up the wall. Mom, who hates to listen to any crying, will give him anything to play with just to get him to quiet down. Against our wishes, she lets him use her old insulin pens and other potentially dangerous objects. When Steve or I object, she says they aren’t any good. But Jarod is a smart boy and he can figure things out very quickly. He watches her give herself shots all the time. What if he gets his hands on his own Epi-pen one day and accidentally injects himself? I make sure it is out of reach but Mom is not always so careful.
Lately when Jarod gets mad he can go on with a tantrum for over 30 minutes. He will throw himself on the floor and kick and scream. I try to ignore him unless he is in danger of seriously hurting himself but Mom feels the need to baby him. If he gets mad at us he will try to dangle from our legs. I just gently lower him to the floor and walk away but Mom will try to hold him while he arches his back and thrashes. Then she will complain that he made her hurt her back. We’ve told her not to try and hold him but she doesn’t listen. This too shall pass I guess.
In other milestone news, Jarod has learned to turn doorknobs and open doors. I had planned for this very thing months ago by tossing a triple pack of knob covers by Safety 1st in my cart during a trip to TRU. Unfortunately, Mom will have a hard time using them because they require you to squeeze in on both sides to grasp the knob, otherwise the thing just spins. These were not designed for people with carpal tunnel and arthritis. The only door we really have to worry about is the door to the garage. Mom keeps it locked during the day but I’m sure it’s only a matter of time until Jarod learns to twist the lock and be free again.
Money, Money, Money…
Normally, money is a taboo subject but I need to get an insurance gripe off my chest. We have Blue Cross/Blue Shield of Alabama. They pretty much have a monopoly on the healthcare industry in my area. We have the standard 80/20 plan but we have to pay whatever BC/BS dictates for prescriptions. For this reason, Wal-mart stopped accepting BC/BS in their pharmacies here. I can’t say that I blame them; I can’t imagine what they have left with the prices they were forced to charge. But back to the story.
On average, we spend close to $600 per month on prescriptions for the entire family. Sometimes, it’s more than that. We do have the option of filing a claim to get reimbursed for 80% of our medicine expenses after we meet a $250 per person deductible. I take every opportunity to get my money back but they make it harder to do every year. The authorization numbers are almost 18 digits long and we must keep up with every receipt or get a printout from the pharmacy for each member of the family. I can never get Steve’s because they are considered confidential medical records and I’m sure you guys know how many of his own errands he does. HA! They only give me the kids’ since they are minors. So I have a folder where all those little slips of paper go as soon I get home from picking up refills.
This is one of the major reasons we can’t get out of the hole we got into when Jarod was born. I missed so much work taking him to the doctor all the time. Then Jaida got all those ear infections that required newer and stronger antibiotics. Back then, a course of Zithromax or Augmentin cost at least $60 a pop. Pretty soon I was resorting to my credit cards to buy food or medicine when I didn’t have the cash to pay for them. The bills for the part of the doctor fees that our insurance won’t cover don’t help either. Just the other day I got a bill from the lab that did the blood work Dr. Corbier ordered for Jaida back in January. They want $375 for the high-resolution chromosome screening and the copper/zinc testing.
I also got a bill last month for my balance of my breast reduction surgery. My surgeon wanted $455 and the anesthesiologist wanted $125. I just sent what I could for that month. What are they gonna do? Put my breasts back on? I should have known that when BC/BS said my surgery was “medically necessary”, that didn’t automatically mean “fully covered”. I know what some of you may be thinking. At least I have insurance and at least I have a job that allows us to pay these bills in a timely fashion. I’m grateful for both but that does nothing to ease the financial strain of paying for what’s not covered or left over. BC/BS doesn’t cover newborn care after birth or the PKU and thyroid testing either. That means we will start out with a $200 pediatrician bill when Lambchop is born. That will include Dr. Simon checking him over while we’re in the hospital and making sure he is ready to go home.
Who the Heck Was Braxton-Hicks Anyway?
About two weeks ago, I had this weird shortness of breath. When it happened again the next day, I finally realized it was Braxton-Hicks contractions. I consulted my good old Sears’ Pregnancy Book and was reassured to learn that the shortness of breath accompanying them was normal. It’s also normal to have them sooner and much stronger in subsequent pregnancies. Just as the book said, they happen in the late afternoon and throughout the evening every day now. I sincerely hope that this is a good indication that I will be able to go into labor naturally if my B/P cooperates.
It feels like I woke up on Easter weekend and suddenly blossomed overnight. The belly that used to be quite soft is now putting up a little resistance when I get too close to the counter. My pelvis and back are constantly complaining and I’ve begun to think seriously about seeing a chiropractor for the first time since before my reduction surgery. However, I don’t think pregnancy is the time to get my first-ever adjustment. But if I have another episode like I did last week, I might reconsider it. I lifted my leg to step on the platform in my bedroom to get into bed. After my leg was in the air, I felt something click in my right hip. A pain so sharp that I was instantly frozen shot around my lower back and I was paralyzed!
I couldn’t put my foot down or raise it without yelping. Steve thought I was crying out from something about the baby I think, because he rose up in bed and turned to see if I was okay. I scared him I think, since he was just dropping off to sleep. A minute or so later the pain had subsided and I was able to move. I was still a little scared to lift my leg to get into bed though. I had really bad sciatic nerve pain with Jarod but it was nothing like this. I felt like the Tin Man from The Wizard of Oz. Just call me Tin Lizzie and keep the Penzoil ready.
Another new issue is my clumsiness and my girth. My in-laws remodeled the master bath about eight years ago and made it worthy of Architectural Digest, (in my eyes at least). Unfortunately they bought a shower that could double as a coffin. It really is a steam shower complete with a sauna seat that pulls down from the wall. It’s so air-tight in there when the magnetized door is closed; I never ever let the kids go in my bathroom without one of us. Due to the lack of space I can barely bathe myself in there now. I can’t lift my legs to wash below the knee due to the back pain thing (and the sauna seat), so I just squeeze soap from my washcloth in that general direction, LOL. I dropped the soap in there a few nights ago and I nearly gave up on the whole idea of finishing my shower. It was so sad but so funny at the same time. Well, I hope that made you chukle.
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