Yesterday (Tuesday) both Robert and I went to see her. I hadn't seen her since Saturday. Sunday I spent the day with my mother-in-law and daughter at my Aunt Constance's house, and Monday the kids had off. It felt so good to hold and feed her. We caught up with Dr. G in the hallway and had a quick chat. He mentioned that Jenna had another desat episode the night before, so they wanted to keep her a few more days. They also wanted me to come spend the night with her! Scary/cool!
So off to NICU I went after we put Julia and Ben to bed. Jenna and I got our own little room. Which was rather cold and was missing the TV remote. Jenna was unhooked for the first time ever from the monitors and had her own little bassinet. The goal was to see if she had any desat events overnight and to make sure I knew what to do. I had forgotten what "sleeping" with a newborn was like! I think she was cold as she woke up every 1 1/2 hours instead of her normal 3. Which meant I didn't get any sleep! Still, it was good to be with her, hold her, and feed her. The nurse came and took her back to her NICU bassinet at 6. I chose to get a bit more sleep. I wandered into her NICU room around 8 am to say goodbye and talk to the nurse/doctor, but walked into a crisis. One of the babies (a micro preemie) was in critical condition and had about 8 people attending her. It slammed home the point that we are very, very lucky.
Robert went to visit with her this evening. She's having more desat events and - other than she's a preemie - they're not sure why. So she's still in NICU. And we still have no idea as to when she's coming home.
- Current Mood: sad
First, the good news! Jenna got to see her grandma, Irma (Robert's Mom), yesterday and today. I went with her yesterday and Robert today. Jenna continues to do well. She's having fewer deceleration events each day, and and up to 2 oz of breast milk at each feeding. I don't know where she's putting it, though!
Irma and Jenna
|"Don't wake me, Mama! I'm sleepy!"|
Now for the bad. Before Jenna can come home, she has to pass two tests. The first is that she has to go 7 days without any deceleration events. The next is the "car-seat" test: she has to fit in her car seat (she does!) AND she has to sit in it for 90 minutes without any problems.
Some days it seems as if she's never going to come home.
We're very lucky and I know it. Nearly all babies born at or more than 35 gestational weeks survive with few if any problems. Her only real "problem" is remembering to breathe - an issue that nearly all preemie babies resolve with time. Still, it's hard. When you have a baby they're supposed to come home with you when you leave the hospital, darn it!
So each day either Robert or I (or both of us) will make the trek to the NICU unit and spend as much time as we can with her before heading home to spend time with Benjamin and Julia. It always seems as if we're not spending enough time with Jenna. It helps to know that she has skilled people watching over her, keeping her safe and loved when we're not there.
|Julia, Jenna & I||Benjamin, Jenna & I|
- Current Mood: hopeful
I'm doing much better, too. The spot where the epidural enters the spine has stopped aching, which is very nice! The c-section incision barely bothers me - sometimes to the point that I forget it's there. My abdominal muscles, on the other hand, protest mightily if I do too much. I definitely feel much better now that I am off of all the medications I was on both during the pregnancy and my hospital stay.
Benjamin and Julia are doing better, too. Last week was really hard on them. Robert and I had never been away for longer than 3 days before, so for us to be gone nearly a week was difficult for them. We're slowing getting back into the swing of things.
That's it for now. Here's the latest picture of Jenna.
- Current Mood: mellow
December 9, 2010: I am not feeling well. Not necessarily bad, just not good. I called the doctor to see if she wanted me to come in, but, as it was lunchtime, I got kicked to the voice mail. I left a message for them to call me on my cell phone as I was in Julia's classroom, helping out with the Holiday Party. I expected to be called back after lunch. Three hours later they called be back - when I was at home, aka the "no cell phone" zone. I immediately called them back on the house phone - and got voice mail again. I called back twice more and got voice mail both times. Grrrrr.
December 10, 2010: Student presentation day! I get to sit back and listen to them talk all class period - one of my favorite days. Unfortunately, I still don't feel good and my doctor calls back on the home phone. Where I'm not. We wrap up class early and I call back the doctor. Success at last! But with a price - she wants me to head over to Labor & Delivery at Kaiser Sunset. So I head over there and spend the next 5 hours hooked up to monitors. The good news: the baby's fine. The bad: I'm having pre-term contractions which may lead to pre-term labor. The first medicine they give me to stop the labor doesn't work. So the give me Nifedipine, a drug used to control blood pressure but that also has the handy effect of stopping contractions, and send me home.
December 14, 2010: Doctor is pleased with my blood pressure and A1C levels, but now wants me to come in for twice weekly non-stress tests. And I also discover I'm allergic to Nifedipine. It's going to be a long two months.
December 15, 2010 - January 3, 2011: Still on Nifedipine, still itchy, blood pressure increasing and blood sugars wacked out. Everyone assumes I'm on Nifedipine for my high blood pressure and never believes me until they talk to my doctor. This is getting annoying!
January 4, 2011: Julia decides to give me her cold. Thanks, Jules. Sinus headache ensues.
January 10, 2011: Officially OFF Nifedipine! I'm no longer itchy!
January 11, 2011: Doctor is becoming increasingly concerned that my sinus headache is masking a preeclampsia headache.
January 14, 2011: Doctor tells me that 1) if I go into labor anytime after today she's not going to stop it and 2) if I get another headache that doesn't go away with Tylenol I'm to go to Labor & Delivery.
January 15, 2011: Woke up with a sinus headache. Guess what it doesn't do? We call Robert's aunt and ask her to come stay with the kids for a day or so until we get back. She arrives and it's off to L&D!
10 pm: After spending a few hours in the NST room they admit me and move me to an L&D room. I get: an IV, penicillin, insulin, and magnesium (to prevent seizures) drip bags. I also get hourly finger pricks to test my blood sugar levels and a blood test every 6 hours and some medicine to help "ripen" my cervix.
January 16, 2011: Noon. I've dilated to about 3 cm. Another round of cervix ripening meds for 12 hours. I'm not allowed out of bed or to eat. My right arm is full of bruises from the blood tests. I can't sleep. I'm not in a good mood.
Midnight. Now I'm 3 1/2 cm dilated! They start me on pitocin.
January 17, 2011: 2 pm: epidural time!
6 pm. I've been on pitocin for 18 hours and have made no progress. Robert asks the doctor if it's time to start thinking about a C-section as an option. The resident doctor, the intern, and the nurse all get the exact same look on their faces (which I found kinda funny) and agreed. There is an emergency C-section ahead of me, but then we're next!
7:30 pm. Make that two emergency C-sections. Sigh
8:30 pm. Finally! I'm taken to the operating room. Robert cautions the anesthesiologist that I need more than the normal amount of pain meds. She smiles maternally at him an assures him it will be alright. I might feel some pressure, but that's it. Uh huh.
9 pm-ish. Robert has to stay outside while they prep me. The anesthesiologist gives me the pain meds, waits a while, then pokes my tummy with something sharp. "Feel that?" she asks. "Yup." She frowns and gives me some more. Finally, after three more tries, I don't feel anything. Robert comes in and they begin. As they wipe my tummy with the iodine (or whatever) I can tell that it's cold, and say as much to the anesthesiologist. Another frown and another increase. Apparently I'm at the max now. The doctor starts the incision and I can feel it - not much, but it's more than pressure. As I'm debating with myself whether I should say anything or not (it wasn't that bad), the doctor starts to move her hand into the incision. OUCH! Pretty much everyone stops what they're doing and looks at me in amazement. Robert asks them in a panicked voice if they can knock me out. The second anesthesiologist pulls off the O2 mask and puts the NO2 mask on me. And then the weird but cool stuff begins. At first I can't see anthing but I can hear what's being said. Cool. Got to remember that for later. Then I experimentally try to move my right foot. Nada. Still cool. Somewhere along the line I go completely out and have a dream about a board game in the shape of a star and all of the spaces are marked with the number 13. Don't ask - I have no idea either.
10 pm-ish. The next thing I know I hear someone asking me a question. I promptly respond with "Thirteen!". Gotta love drugs! That blue cloth divider prevents me from seeing much but I can see Robert off to the side and someone holding Jenna. Robert comes to my head and reassures me that Jenna is fine, then asks them if I can see her before they take her to NICU. She's brought to me and I nuzzle her little head (it's so small) with my nose. Then she's taken away.
|Just born!||Me with Jenna|
Official Jenna Stats:
Born: January 17, 2011 at 9:58 pm. 5 lbs 15 oz, 49 cm (~19 inches) long.
I'm taken back to my L&D room while Robert heads over to NICU with Jenna. I'm still pretty out of it. The nurses feel so sorry for every finger prick and blood test that they wait to transfer me to the bed until a nice, cushy air mattress is brought in for me to sleep on. I know Robert comes back at some point but I'm still groggy from the magnesium and anesthesia.
January 18, 2011: I have to be on that damn magnesium for twelve hours after Jenna's birth. Ugh. Which means I STILL CAN'T LEAVE THE BED. I really hate that bed now, cushy or not. BUT - I get to eat real food! The doctors and nurses and Robert all assure me Jenna's fine. I attempt to post the news on Facebook but get pretty much all of the facts wrong. Maybe I should wait until I'm off the meds . . .
noon: I get to get out of the bed and sit in a chair for lunch! I feel like such a big girl now . . .
10 pm: I'm officially off the magnesium and off to the Post Partum room. No more IV, no more catheter, no more blood tests - woo hoo! AND I finally get to go see Jenna! Life is good.
January 19, 2011: Hangin' out in my Post Partum room. They want to monitor my blood sugars for a while to insure they're stable. Robert goes home and relieves his aunt of her longer than expected babysitting duties. The kids are ecstatic to see their daddy. It was a rough week for them. They had never been separated from us for longer than a few days. He brings them by to see me. After the initial round of hugs and kisses, they want to watch TV on my bed. And life begins to return to normal for them.
January 20, 2011: My mom's birthday - it would have been her 64th. Happy Birthday, Mom! I wake up with extremely low blood sugar levels (38) at 3 am. One nurse panics while the other gets me some milk, juice and crackers. See? I TOLD you that happens to me, Doc! Unfortunately that means I get the wonderful opportunity to stay yet another day here. Joy.
January 21, 2011: I ask when I can go home. The doctor wants to keep me another day, but I put my foot down. I tell her I have two kids at home who need me. She agrees. I go see Jenna again, talk to the lactation consultant, get the staples (not stitches!) out, and am all ready to go by the time Robert and the kids get here. Robert stays in the room while I take first Julia and then Benjamin over to see Jenna. They were amazed at how small she was. I was impressed by how good each of them were in the NICU!
|Julia, Jenna and I||Benjamin, Jenna and I|
We finally get home at about 8 pm. Tomorrow is Jenna's baby shower so I won't be able to go see her (sniff). I know she's in good hands, though, and is getting the best care. It's still hard knowing she can't come home yet. But we're lucky - her biggest "problem" is that she was just born too soon. She's basically a small but healthy baby. And I'm grateful.
- Current Mood: melancholy
do-do-do-do, do-do-do-do, do-do-do-do
So, it's 2000, and Robert and I had been trying to have a child for a while. So we go to an IVF specialist. And have lots of tests. The bottom line is that the chances of us having a child on our own is in the "not gonna happen" category. Also during this time I notice that my skin is getting really dry and I'm starting to loose some hair. Two years later Julia arrives on the scene (she was so ready for her close-up).
During my pregnancy with Julia it is discovered that I have diabetes. It's a bit of a debate as to whether it's type I or II (another long story), but with my father's family history it was more of a matter of "when" and not "if". My research into diabetes suggests that the dry skin and hair loss could be due to the diabetes. Who knew?
Three and a half years pass before Benjamin makes his appearance. His pregnancy was not a good one. First, when you do IVF, you have a LOT of ultrasounds - about 1-2 a week for the first month or so. The very first ultrasound showed that there were two little ones in there. And one was clearly not doing the same thing as the other. Multiple ultrasounds and tests later it was discovered that twin "B" had severe genetic anomalies and he did not survive past 12 weeks gestational age. Twin "A" (Benjamin) was just fine. The genetic counselor suggested that my two previous miscarriages were also due to genetic problems. Great.
So, two IVFs and two kids later, we were done. My dry skin and hair loss was joined by weight gain, memory problems, feeling tired & weak, wacky blood glucose levels, and highly irregular periods. My doctor thought I was going into menopause early. I was ok with that! She also attributed all of the other symptoms to poor diet and control of my diabetes. I was not ok with that. I was trying - hard - and not really making any progress.
Which brings us to June 2010. I have had bunions for years (worsened by pregnancy, not high heeled shoes) and was finally ready to get them fixed. I did all of the pre-op tests, including a pregnancy test. Which was negative, by the way. And then I had the surgery. The first day really wasn't too bad. The second was AWFUL! By the third day the pain was manageable and I only had to take the vicodin once or twice a day for three days or so. With each surgery I've had - tonsils, knee and now foot - I wouldn't have a period for two or more months afterward. Why? Don't know. It happens when I get really sick too (think: flu).
Let's recap: We're infertile, I have diabetes and am probably in perimenopause, and I just had foot surgery.
Fast forward to September 2010. Benjamin is NOT happy in Kindergarten. So unhappy and stressed out that the minor fever that's going around Kindergarten morphs into Scarlet Fever. But we don't know that yet. The doctor (not his pediatrician) says it's just a virus with a rash and it should go away in a day or so. A day or so later it's worse and it's off to pediatric urgent care. His aunt, a pediatrician, thinks it's Scarlet Fever. The test results are negative for strep (Scarlet Fever is strep with a rash) so the official diagnosis is a really bad virus. Which he gets over it and it's back to school. Then Julia begins to complain about a headache and sore throat a few hours after returning from a Brownie sleep-over at the LA Zoo. I can the Kaiser nurse hotline and get an appointment We're not waiting a week like we did with poor Ben. She's diagnosed with strep and it's 10 days of nasty-tasting amoxicillin for her. She's off the antibiotics one day and she's showing the same symptoms as Ben. Another emergency appointment later and she's diagnosed with Scarlet Fever, too. They up the antibiotic to one I've never heard of (Azithromyacin?) for 5 days. This one apparently tastes better. By now it's October and I averaged 2 doctors appointments a week for the month of September. That's nearly $100 in co-pays!
I finally get a chance to rest and I begin to notice that something's not right. I've got a pressure in my abdomen, my belly button hurts, and my blood sugars are completely out of whack. In addition, my heart is starting to beat much more strongly than is normal. I start to look up my symptoms on a variety of sites and nothing seems to match. I'm not constipated, I'm don't have irritable bowel syndrome, etc., etc. Pregnancy never even enters my mind as an option because 1) I supposedly can't do it on my own and 2) I'm in perimenopause. What's left? The scary stuff - cancer, other tumors, etc. So I make an appointment with my doctor to try to figure everything out.
While I'm explaining everything to Robert it dawns on me that the area around my belly button feels just like it did when I was pregnant. We decide we should do a pregnancy test, just in case. The result? Mixed. It shows negative but the control didn't work. So I do a second one. This one shows positive, but the control didn't work AGAIN! My friend has a friend that works as an ultrasound tech, and she agrees to do an ultrasound. And guess what's there? A little 21 week fetus.
Now we're dealing with a pregnancy that definitely wasn't planned, and we have a host of concerns. I'm 43, diabetic, supposedly in perimenopause, had surgery, took all sorts of medicines you're not supposed to take while pregnant, had sushi, drank coffee and margaritas. Can you say "freaked"?
Most of October was spent similarly to September - two doctors appointments a week. After being poked, prodded, scanned and examined, I finally have most of the results in. They are:
- The hair loss, dry skin, weight gain, memory loss, tired & weak feeling, wacky blood glucose levels, and highly irregular periods? Due to hypothyroidism.
- Amniocentesis - all the results are not in yet, but the preliminary results show no genetic anomalies (ie, Down's Syndrome, etc).
- My creatinine levels are high, but that is due to pregnancy and not kidney failure.
- My heart murmur is not getting worse. The strong heart beats are due to pregnancy and the hypothyroidism.
So, for all of you who were wondering "HOW could she not know?", now YOU know.
And no, we're not going on that TV show, either.
- Current Location:San Gabriel
- Current Mood: accomplished
- Current Music:"Stuff You Should Know" podcast
Fast forward to June. We discovered that one can watch movies via Netflx on Wii. Julia and Ben are now in seventh heaven. Julia can now watch ALL of the Avatar cartoons (all three season of 'em) and Ben can watch all of his dinosaur shows. The only downside is that there are two kids and only one Wii.
THEN "Avatar: The Last Airbender"the movie came out on July 1st. We were in DC for a funeral during that time so we told Julia that we would go see it when we got back. Well, one thing lead to another and it wasn't until today that we were able to go see it. In the meantime, Julia watched every scrap of video on YouTube regarding the movie. If there was something Avatar related on the 'Net, she watched it or read about it. Including many reviews that said the movie stank. She was not pleased.
So. Were they right? Admittedly this was not the best movie I ever saw. One of the biggest complaints that I heard about was the ethnicity of the characters. All of the main characters (Aang, Katara, Sokka, and Prince Zuko) are not Asian. Katara and Sokka are supposedly from the far north (think Arctic circle) and the rest of their tribe looks Inuit - but they do not. They do, however, look remarkably like their cartoon counterpoints, as does Aang. Noah Ringer looks so much like the cartoon version it's amazing. And THAT is what the audience this movie is looking for: how closely the characters and the story resemble the TV show. Believe me, Julia nitpicked how they were pronouncing the names of the characters wrong and how the Fire Lord did NOT look like the one in the TV show. Any deviation from the plot or how the characters should have looked would have been noticed. The acting wasn't the best, either, but it was right on par with other children's movies that did not have the benefit of well known actors or actresses in the title lead. The special effects were fantastic. It is amazing how good CGI is now.
The bottom line is that this movie is for children and is based on a children's TV show. I think M. Night Shyamalan did a good job of staying faithful to the original. Julia and her friends thought it was great. As did I. And the best part? Aang has only learned two of the four elements - leaving the door wide open for a second movie (or third, if he stays true to the cartoon series).
So to all you critics out there: you need to get in touch with your inner child. Seriously.
- Current Location:San Gabriel
- Current Mood: cheerful
We left home at 9:15 and headed to Goldstein's Bagels in Arcadia for breakfast. Why? Not just because I love bagels, but because I had a $10 Groupon to Goldstein's Bagel Bakery I purchased for $5 through Groupon. Heh. I love getting deals. Anyway, I had an everything bagel, toasted, with cream cheese and the kids had hotcakes and a fried egg. Sigh. We headed out to Malibu with full and happy tummies. I decided to skip driving up PCH and elected to take the 210-134-101 route to Malibu Canyon, and then PCH the few blocks to Malibu Lagoon.
We arrived a full 1/2 hour ahead of schedule to find that the meeting place had a pay parking lot. That would have been nice to know ahead of time. The class consisted of four students - three 20-something females and Julia. I must say, I was very proud of Julia. She held her own and did just as well as the adults. The problem was that the teacher was concerned about leaving Julia on her own and was spending more time with her than with the other - also paying - students.
|Julia looking at the Lagoon||Walking to the beach|
|Getting into the water||Getting up and riding the wave|
About an hour into the lesson she wiped out. It was kinda spectacular, actually. She caught a wave and started to go really fast - too fast for her to stand up. So she boogie-boarded in. The front of the board caught a small wave breaking near the shore and head over heals she went, bonking her head on the seafloor. I'm kinda sad I didn't get a picture of it. I was, however, a good mom and rushed out to get her out of the water, forgetting the camera was still attached to my wrist. Julia was wet and scared, the camera got wet (but seems fine), I got wet - I'm sure we'll laugh about it later. The instructor came out to see if she was ok. She say yes, but wanted to rest for a bit. He agreed, and suggested to me that we sit out the rest of the lesson and arrange to make it up with either a private lesson or with a group of students more her age. I thought that was more than fair. I wanted Julia to have a good time, sure. But not at the expense of other paying students. Julia played with Ben in the water for a while while the other students headed back out. The lesson was over by the time Julia was ready to head back into the water and join the group. So now we're waiting to hear from the people at Island Surf Camp to see what to do next.
So, what did Ben do during all of this? Let's see - he had sand, he had dinosaurs. He was a happy camper.
|Ben, sand and dinosaurs||Ben, sand and dinosaurs|
|Ben and Julia playing in the surf||Ben and Julia|
We wrapped up the day with some fish and chips and shrimp and chips at Malibu Seafood, watching the waves and enjoying the sun, before heading home. The saying "a bad day fishing is better than a good day at work". I think that applies to today!
- Current Location:San Gabriel
- Current Mood: tired
And I'm not sure I'm going to this time, either. There are two problems: 1) picky eaters and 2) lack of sufficient freezer space. But I thought I'd give it a try.
So I picked the day when summer finally decided to arrive in Southern California. Yes, after rejoicing in low 80 degree temps for most of June, July and August, the thermometer peaked at 95 degrees this afternoon. A perfect time to heat up the kitchen. The menu?
- 3 meals' worth - Baked Ziti
- 3 meals' worth - Baked Penne with Chicken Sausage (I used tomatoes from my garden instead of the canned ones)
- 4 meals' worth - Irish Beef Hand Pies (mostly for me)
- 2 meals' worth - Quiche in a Bag
- 1 meal - Salmon with peas and rice
- 2 meals' worth - Meatloaf
So, why do this? I'll be working Monday and Wednesday evenings this fall. Planning meals out ahead of time will make things simpler then. Plus, it's more cost effective. But there are downsides. Not every meal freezes (or, more importantly, thaws) well. It generates lots of dishes! My kids are picky eaters and most of these meals will be just for Robert and I. Lack of freezer space, although I'm finding that using freezer bags instead of Pyrex dishes works better: less space required. You've got to remember to defrost a day a head of time. And I'm still going to have to cook those meals. I just don't have to do the prep work.
So, we'll see how it goes. At best it works well, At worst, I'll never have to do it again!
- Current Location:San Gabriel
- Current Mood: busy
We took a family trip to the Griffith Park Observatory the previous Sunday. Along with several hundred other people. Ben and Julia found it difficult to actually interact with the exhibits due to the number of people present. Still, they had a good time.
|The Hollywood Sign||The telescope|
So, where to go to see the Perseids? A local astronomy group was hosting a viewing party in Devil's Punchbowl Natural Area - an hour and a half away. Joshua Tree is always good, as are many places in the Mojave Desert, but those places were even further away. Griffith Park Observatory was going to be open until 10pm that night. It's not the best location for viewing stars anymore due to the growth of Los Angeles (hense the reason it's not used as an observatory any more) but it was much closer. So we headed over there for dinner and hopefully a light show.I was surprised to see that the Observatory was busy at 7 pm on a Thursday night. Apparently that was normal. We had a sunset dinner on the terrace. The kids got a kick out of seeing all of the lights. However, even at full darkness,there were few if any stars visible. Time for plan B.
|Hollywood at sunset||Hollywood at twilight. You can see Mars and the crescent moon in the sky.|
|Los Angeles at night||Julia and Ben|
So, at 9 pm, I headed out to the Devil's Punchbowl Natural Area. Up the 5 freeway, to the Hwy 14, and straight on until Pearblossom Highway (where I have never seen any blossoms, pears or otherwise). I reached N6 - the turnoff to the Punchbowl - around 10:45 pm. Dark enough, far enough from the lights of Palmdale - good enough for me. Ben and Julia had fallen asleep on the way there. I have learned NEVER to wake Ben up from a dead sleep unless it's a major emergency. He does not wake up well! Julia is a different story. She nearly always wakes up happy. I gently woke her and told her to get out of the car. She groggily complied. I turned her around to face north and look up. She did. And her eyes got huge and her jaw dropped. "I've never seen so many STARS!" Sadly, the lights from Palmdale actually diminish the true spectacle of the night sky. But out there in the foothills of the San Gabriel Mountains you can get a glimpse of what it might look like: hundred of thousands of stars of all sizes dotting the inky black sky. We could even see the Milky Way. We stood, the two of us, watching the night sky for a while. We didn't see any meteors, though. But I don't think either of us minded too much.
- Current Location:San Gabriel
- Current Mood: tired
My first concern was that Ben was autistic. A friend of mine who teaches special education noted that he appeared to have "autistic-like" tendencies about a year earlier, so the concern was not out of the blue. His pediatrician, however, did not seem to think he was autistic, and set him up to see an occupational therapist. Off to Kaiser Sunset we went to have him evaluated by the OT. She eliminated autism within five minutes - Ben interacted with her as any "normal" child would, and would ask her to "play" with him often. After the first visit it was determined that Ben was not autistic, had "low muscle tone" (hypotonia) in his upper body . . . and the jury was still out on the rest. It wasn't until the second visit two weeks later that the OT made the diagnosis of SPD.
It seems as if every time we turn around there is a new "syndrome" or "disorder" that needs to be addressed. What the heck is "low muscle tone"? And "Sensory Processing Disorder"? What's that?
Hypotonia is not a medical disorder per se, but rather the potential manifestation of several diseases/disorders that affect the brain's ability to control motor nerves. Babies with hypotonia tend to be floppy and seem to just slip right out of your hands - a la the child throwing a temper tantrum who doesn't want to be picked up. The difference is that children with hypotonia are always like this. Children with hypotonia tend to have delayed motor skills (ding!), poor coordination, and muscle weakness. The good news is that children diagnosed with hypotonia after their first birthday often do not have any serious underlying medical reasons for the hypotonia (like, say, cerebral palsy), and with therapy the condition can often be corrected and/or accommodated.
Sensory processing refers to the manner in which the body processes sensory information from from one or several of the five senses (vision, sounds, touch, smells, and taste), balance (vestibular system), and/or the positional sense (proprioception). People with Sensory Processing Disorder, therefore, have difficulty processing one or more of these senses. The information is received, but it's just not dealt with appropriately by the brain. For some children, sounds and touches are too much, for others, not enough. Some children have no concept of where their body in in relation to other objects/people. And so on. Many people have these issues, too (Robert, for example, has a hard time dealing with loud noises). What sets people with SPD apart from others is when all of these sensory processing issues fall on the outside of "normal". Ben, apparently, had trouble with proprioception (where his body was in spacial terms), and the five senses. Food textures were off - yogurt is good, granola is good, but yogurt with granola is not good. Most fabrics were deemed "too rough". No jeans for this boy. And haircuts? Forget it. Sounds seemed to be ok, although loud sounds like blenders, etc, bothered him, as did light. And while he liked to play with others, large groups (more than, say, ten people) were discovered to be too much for him and he'd retreat within himself. These issues will never go away. All you can do is identify the problem and adjust your life accordingly.
We made the decision to pull Ben out of Pre K at the end of June. This was a hard decision - between the two kids we'd been at the school for eight years! However, I was scheduled to have foot surgery in June and would be unable to drive Ben up to the school afterward. Robert couldn't take him with him on the bus as there is extremely limited bus service in that area. So, Ben and Julia would stay home with me during the summer. In the end I'm glad we did. I am a HUGE proponent of organized daycare and Preschools. However, having Ben home with me this summer clued me into How Ben Works. While he is not autistic, he does have many autistic-like tendancies, including withdrawing into himself when he is overwhelmed. I knew he did this. I just never realized how many times during the day he did this. And with kindergarten fast approaching this is information I need to share with his teacher.
Which brings me to the Sensory Room. (See? I did have a point after all!). Many pro-SPD websites such as Sensory Processing Disorder Foundation and The Sensory Processing Disorder Resource Center suggest creating a sensory room tailored to the needs of your child. For example, children who need more stimulation should have a room where they can rough and tumble around. The idea is to create a room to explore sensory input in a safe, non-threatening environment. We already have a "therapy box" with items to explore tactile experiences, and outdoor toys to help with proprioception. But we simply don't have the space in our house to create a separate room just as a "sensory room". Re-configuring Ben's room would have to do. Besides, he already retreats there when overwhelmed, so it was a logical place to start. Off to Bed, Bath and Beyond to acquire soothing bedding for Ben we went. First up: softer sheets. Ben liked the color of the Ikea sheets, but not the feel (too rough). I got some clearanced Berkshire Bedding Microloft sheets (read - low pile polar fleece), and a Berkshire Bedding Anywhere Throw fuzzy blanket. Both are super soft and cuddly, and, importantly, textures Ben loves. And, I got the sheets clearanced AND was able to use my 20% off coupons. I must say, I love the feel of those sheets. So much so that I may go back and get some for us for the wintertime. We need some new sheets anyway. Next, one of those sound spa machines. BBB also has a Homedics SoundSpa Sound Machine for $20. It will provide soothing sounds to help him deal with feeling overwhelmed. He already has one of those aromatherapy shoulder wraps (although it's lost a lot of it's scent over the last year) which acts like a weighted blanket. I'd love to get him a weighted blanket, but at $150 to $200 each, it is going to have to wait. I'm not sure what else to include right now. I'm thinking of one of those bed tents for him to retreat into (he likes hidey holes) or maybe a space on the floor for a small indoor tent with pillows and other soft items. Sure, he'll grow out of these items one day, but it's today that counts most.
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