Monday, December 22, 2008
Saturday, October 25, 2008
Early Development--Sitting, Standing
The "bad" toys are the ones where Elena was encouraged to be on her toes, such as:
Door-jam jumper/"jumperoo" type harnesses. E didn't "jump"--but it encourages being on her toes
Exersaucers. Encourages being on toes--we'd use it if we wanted her upright and needed our two hands for something else, but never for long periods of playtime
Ideal toys for Elena were ones that would keep her attention while we would try to do sorts of "therapy-play":
Duplo legos she could pull apart. Uses both hands to pull, develops strength and coordination
Containers of all types. Put/grab items across body to use different hands, develop core strength
Box with latches and locks. Great for keeping attention while working on standing/balance
Exercise ball. For stretching, working on protective responses--side, forward, back--while sitting on the ball. If able to stand, can push ball back and forth
Kitchen utensiles (not sharp ones, obviously). Shiny, tactile, attention-grabbing objects that have some weight to them and can be LOUD.
Giant plastic storage box filled with dry beans. This has been one of our BEST investments. Before E could sit independently she could be propped up inside the box and play with the beans using her hands, working on fine motor skills. We have 4 types of dry beans of different colors and sizes to encourage sorting and counting. Two years later, we still have the same box and beans--but she plays in and out of the box. All her friends LOVE IT. Easy to pick up, cats keep out of it, and so far, hasn't needed replacing.
Other: Straw cups instead of sippy cups. Elena never took to a sippy cup b/c she didn't lean her head back well to drink from it (weak core). The straw made it easier to drink, while working on her mouth muscles for speech development ("oooo" sound was particularly late; using a straw can help)
Later Development--Standing, Stepping
Dolly stroller, flimsy-type. Moves WAY to fast, E kept falling on her face.
Pottery Barn Mini-Zooper Stroller. Has a large wheel base so it can be pushed over different surfaces, including wood floor/molding/carpet/grass/small gravel without wheels getting messed up. We put canned goods in the bottom portion of the stroller to make it harder to turn to work her core muscles. Unfortunately this stroller costs about 3x what a flimsy stroller does.
Walker. Elena uses a forward walker--it took months for her to take to it, and we've nearly outgrown it's use (she runs with it when she can, which means she's on her toes too much and pops out of her AFOs). Great for more rugged terrain, where she can't run.
Loftstrand (wrist) braces. We are currently learnign how to use these. She can stand taller than ever with them when she walks, which is great.
Pediatric treadmill. I am currently having side supports constructed so we can use this, ideally daily.
AFOs. Elena cannot walk or stand upright without them. They allow her feet to stand flat(ter) and provide a good foundation for balance. She wears them any time she is not sleeping.
Feeding chair. We had a highchair, but it took up SO much kitchen space and was too large/unsupportive for Elena's core we had to find an alternative. I like the Fisher-price travel highchair--it straps to a regular chair, is adjustable height, and has a smaller seat base so she can't slouch side-to-side as easily. We also put a stool under her feet to help her posture. It's also WAY cheaper than a traditional highchair.
Play chairs. Finding a chair where Elena could sit in a 90-90-90 position (flat feet, knees at 90 degrees, back straight) was a REAL challenge. Elena needed a chair of the right height that had a back and side support. I bought a Chairrie off Ebay that I had measured to fit her. She's a little big for it now, but it was a good investment. I also bought a chair off the classifieds from a mother of a special-needs child with the same issues...they had found a chair they liked and cut off the legs to be the right height. Now that she is stronger in her core and taller, more chairs are appropriate and she can use benches without backs to them.
Play table. We needed something that she could sit/stand upright and NOT lean on for support. This was difficult at first, as many toys she took to were too short for her to stand up and play with WHILE standing on flat feet. She has a craft table in her playroom and also likes to play at the coffee table. This has been less of a problem now that she stands up well.
Kettler Trike. This tricycle is a great size for small children, room to grow, has a seat belt and a push bar. Make sure to buy one that has a non-coasting front wheel. I had to call the company to get one and switch it out (not cheap). We strap E's shoes to the pedals with velcro ties, and she gets her legs pumping while we push. She now tries to turn the wheel herself.
Mini beanbags. Good for catching and throwing while doing standing drills. If balance is pretty good, can work on putting a beanbag on different parts of the body. Now we can use balls, but beanbags were a great start to this drill, b/c they wouldn't move when she'd try to pick them up.
Dr. Josh—delivered E.
NICU Nurses—Kitty, Nicole, Paula, Esther, Joe (to name a few favorites)
Anne Peery—lactation consultant
Brenda XXX—my mental health counselor
Dr. Ashby Robert Trundle—pediatrician
Dr. Blackman—developmental pediatrician at KCRC
Dr. Houlihan—E’s developmental pediatrician at KCRC (post-CP diagnosis)
Dr. Mark Abel—E’s pediatric orthopaedic doctor
Theresa McCullough—main PT (EI, private)
Teresa Andrews—sub PT (EI, private)
Jen XXX—sub PT (private)
Sarah James—main speech T (EI, private)
Elayne Fitzgerald—Horses As Healers, therapeutic horseback riding
Cecily, Fun Brian—Little Gym teachers
Edward Parelhoff—pediatric ophthamologist
Sherry Lord—Public School PT
Maureen Tilley—Public School SpT
Judy Spellman—Public School OT (currently not in use, but will be)
IEP coordinator (used to be Neil) Cathy Wojik
Delores Alt (now Cassandra)—Care Advantage Plus rep (Medicaid provider)
Kelly Peters—EI coordinator (lost after we left EI)
Dave Carmines—gait analysis engineer
Patty Payne—PT at KCRC (gait analysis center)
Geisha Goodman—Bright Stars teacher (public school program)
Ruth XX—Bright Stars assistant
Ariel—PE Teacher (public school)
Beth—PE assistant (public school)
Annette--nanny (of course)
Susan XXX—RN, case worker for Southern Health (my/E's primary insurance)
Tuesday, August 12, 2008
Elena’s first assessment was with the Speech Therapist in December 2007. At this time, she was using words, but she could only use one word per breath. She knew her colors, and could answer yes or no questions, and could point to the answer to a very involved scenerio, like this: There are three pictures involving groups of different colored kittens. One group is playing with string, one group is playing with a ball, and one group is playing in and around a box. There are kittens playing, sleeping, eating, jumping in the different pictures. The therapist would ask “Where is the black kitten in the box?” and Elena would find it, even though there were black kittens in each picture. “Where is the grey kitten sleeping with a ball?”—she’d get those questions correct every time. So even though she couldn’t say “black cat”, she could convey she understood the situation. A speech delay, if it is major, is considered an impediment to learning as it is difficult to communicate in an educational group setting—so that was an automatic qualifier.
Occupational therapy was next. In essence, this is assessment was of Elena’s fine motor skills and “skills for living”. Most of this is normally done sitting down in a play area—but Elena does not sit down well on the floor, so she was allowed to sit or stand at a table. This wasn’t optimal, either, as the chair was too larger for her, and had no side support, and the table was too tall for her to be able to lean on while standing up. Still, she showed no massive problems related to fine motor skills—she could put beans into a pill bottle (and screw and unscrew it), string beads, draw lines (straight and circular), stack blocks, and fold paper, to name a few of the tasks. She did not qualify for OT services.
PT was next—the assessment of her gross motor skills. This is her obvious deficit—but just b/c a 2 year old couldn’t walk didn’t mean she couldn’t be a smart student. This was my biggest fear—her largest need not being met b/c of the educational model. I argued that children learn social skills and education at this age through things like pretend play or group play, and Elena’s gross motor issues prevented her from engaging in those activities. The therapists and teachers agreed with me, but wasn’t sure if that explanation would be good enough for the State.
Since we had the speech delay as a qualifier, she was accepted. I’m not sure if she’ll qualify for therapy services in the future, as her speech progresses. I have been told that once you’re in, it’s easier to stay in the program, so I’m hoping that is true. I also think that she’ll end up qualifying for OT services in the future, as being potty trained in the classroom would be important—we are close to being potty trained, but she can’t get her clothes on and off by herself, and won’t be able to for a long time, as her balance is terrible. OT and PT to improve balance could be available to us, depending on the spin factor. I’ve also heard of parents toting the ‘safety line’, using various therapies as a way to keep their child safe while they are at school (improved balance while being jostled in the hallways, being able to carry something while walking, etc). Apparently the word ‘safety’ tends to evoke a strong response when nothing else works, as schools care about liability.
Elena’s EI program was to end May 1, and school ended June 6th. I didn’t like the idea of having her therapists switch up for a month and then have a large summertime gap. I opted out of EI earlier than her 3rd birthday, mainly b/c I got to “double up” on her therapies—she got Speech T and PT at school, and she still saw her EI therapist, only not in the home (I drove her to the therapy center).
After the surgery, she seemed to be straight right away. We were stunned! We also think this had a lot to do with her increase in signs and vocalizations. CHECK TIMING OF THIS. She did start to drift upwards “into the outside corner” of her eyes, but that seemed to resolve itself. Unfortunately she has started to drift outwards (wall-eyed) in the past 3 months or so (starting around 3 years, 1 month). Dr. P was a little surprised—but not shocked—he had hoped her brain had “locked on” to a binocular image. She’s scheduled for another surgery before the end of the year. He says eventually her vision will level off, but they won’t give up on getting her eyes straight (at least—he’s not sure if she’ll use her eyes together, at the same time or not). The good news is Elena has (and always has) 2 eyes that are healthy, but unfortunately do not (yet) work together.
She got her second round of injections 6 months after. Normal duration of Botox spastic muscle relief is around 3-6 months. elena was injected in the same muscles as before. Again, it lasted around 6 months, but her needs had changed—with increased weight-bearing, her right knee constantly “caved in” (due to the pulling action of her right adductor muscles) and she had a very hard time standing up straight (over-strong hamstrings). Her third round of injections was the first time they targeted multiple muscle groups—the adductors (inner thighs), hamstrings (back of the upper legs), calf, and soleus. She was sedated for these shots, as she had become bigger, stronger, and more vocal by this time. The Botox effect wasn’t as extreme this time around, as we still have to wrestle with flexing her right foot—don’t get me wrong, it is MUCH easier than before her injections. I can tell, though, that Botox treatment won’t be a viable option for us much longer. I imagine that within a 2-year period, there won’t be much benefit with further shots.
One observation that is worth noting: just b/c Elena had an easier time moving did not mean her balance improved. I guess being less “tight” gives her the opportunity to find a different way to balance her body, but any progress in the balance department is extremely slow. Botox has definitely given her the flexibility to work on protective responses, such as hands-in-front to catch herself when she falls, or bending her legs when she falls.
Our first problem with AFOs came up when Elena needed shoes (about 13? months old). The shoes fit the AFO, not the foot, so normally they are at least a size too big. This is a lot of weight, not to mention an awkward size, for a child who has issues lifting her feet off the ground. AFOs also don’t breathe, and sandals typically get caught in the hinges of the brace, so Elena’s feet get very hot and sweaty. Elena’s feet are always trying to point, and her legs are always trying to straighten, so keeping her in her braces was a real struggle, she’d always be popping out, and then getting her little heels pinched in the back hinge. In order to get her back in the brace, we’d literally strongarm her foot into a flexed position and stuff it in the brace. Over time, this became easier, but never “easy”. Still, the payoff is fantastic. She can now stand with flat feet, and her feet are not as pronated—the right is still worse than the left, but not by much. The wearing of AFOs is greatly facilitated by Botox treatment, which we have had for a year and a half at this posting.
During the appointment, Jason and I basically just nodded our heads, logically taking it all in. Jason asked a couple questions related to intelligence, or certain expectations, to which the doctor basically said there was no way to know. When we left, I was absolutely devastated. The realization that the hope of Elena having a temporary problem, but actually being like a normal child had completely evaporated. In an instant I became the parent of a special needs child—a position I never wanted or expected to be in. I thought, how is this fair? There are women out there who wreck their bodies, who are so irresponsible with their pregnancies, who have healthy babies—why ME? Why US? I couldn’t stop my mind from reeling—would my child know I loved her? Would she be able to tell her parents she loved them? Could she ever feed herself? Would she ever sing a song? Would she ever know what it was like to climb a tree? Pick up a penny? Walk on grass? Walk on anything? Ride a bike? Play on a soccer team? Swim in the ocean? There were so many things about my childhood experience I felt like had been struck off the table. I tried to positive around Elena for the rest of the day, but I was miserable. Jason took me aside, and said “Amy—look at her. She is the same beautiful baby girl she was yesterday. Think about that.”
The next step was her MRI. CP is a clinical diagnosis, so an MRI isn’t necessary to qualify her condition. It can confirm a CP diagnosis. The doctors hinted that the scan gives information about the extent of the damage, and they may try to extrapolate future symptoms or expectations. Elena was very functional, so we expected the scan to show a nearly normal brain. We were wrong.
Elena’s scan was horrible. The active (oxygenated) portions of the brain in an MRI scan are white—her scan was basically a black hole where the white matter should be. Again, I was completely devastated, and had crying fits for the majority of the day. We had a PT appointment later that day—that therapist had ‘seen it all’, including tons of MRIs, and she really made my day better. She said she’d seen scans of brains that looked normal, but the children were wheelchair-bound…and she’d seen scans where the brain looked completely black, but the children just walked funny. She said the brain is a funny thing, and you never know how it’s going to wire itself to work. “A picture is just a picture.”
I decided that all the news I’d get from doctors, for the next year, would probably be bad. I expected it to shape up after that. Turns out, I was right.
Volume. Elena barely made sound—didn’t babble, didn’t coo, didn’t cry—hardly ever, and certainly wasn’t anything remotely close to colicky. People who would come to visit would say “oh, wow, she’s such a good baby”, which we’d wonder why she was so incredibly quiet. I refer to these months as her Mute Period. She did turn when I made sound—or, I thought she did, but I couldn’t be sure. She was tested for deafness when she was XX months old. She has one tone missing in one ear—which means she hears as well as you or I. For whatever reason, she just didn’t make sound, really.
Vision. Elena’s eyes were always “off”. At first, I wasn’t sure if this was a big deal, but as she got older week by week, it was obvious she was cross-eyed. They call this congenital (born with) strabismus (crossed eyes). It was pretty bad, her eyes looked “pegged in”. Her pediatrician immediately noticed—but didn’t tell us, at first, that congenital strabismus is a hallmark of neurological problems. He waited to see how she was progressing in other areas—which was fine, b/c I probably wasn’t ready for more bad news, and in any case specialists would have waited a couple more months, too.
Eating. Elena was NEVER a good eater. Her best bottle-fed moments were maybe 6-8 ounces of breast milk at a time. She has never, even now, voraciously eaten any type of food. She also rarely spit up. In retrospect, maybe I wasn’t vigorous enough in getting her to eat. Her doctors thought she was growing okay, she wasn’t “failing to thrive” or anything, but she was definitely not gaining weight like other babies. Appetite/size was sort of chalked up to “well, you’re small, and your husband is small, so maybe she’s just small” type of thing.
Movement. I now know that babies, even tiny ones, do a certain amount of “writhing”. Elena never did this. She wasn’t necessarily a “noodle”, or a stiff board, but in general she’d just sit there in her bouncy seat. She didn’t move her arms a ton, but she did move them, and she definitely moved her hands more than her feet. She did kick her feet, but not much, and she tended to do them together, symmetrically. She certainly didn’t bring her legs to her stomach much (like a reverse crunch), or twist her midsection. She rolled over early, due to the strength of her “back arch”—we learned (much much later) that back arching, like she would do, is common with spastic CP.
Constipation. Elena was constipated from day 1. Even on a diet of breast milk, she had very irregular bowel movements. At one time (still, only on breast milk) she had gone 5 days without one. The nurse was not concerned—she said it was normal for babies to “have bowel movements from 4x/day to once every 8 days”. I was appauled—what kind of range was THAT?! I tried mixing juice, prune juice, and corn syrup in her breast milk, and nothing worked. She’d eventually have what we called “a blowout”. I knew we’d have to do something about this, but figured Breast Milk Is Best, so we were doing the right thing. See Breastfeeding a Preemie.
Anemia. At E’s pediatrician (I forgot which month checkup), they did a routine iron test. Elena tested so low they thought there was no way it could be correct. She was severely anemic—which could have accounted for her lack of energy/hunger/movement. She was immediately put on an iron supplement—and even though iron uptake is normally very fast, checkups week after week still had her testing very low. We started suspecting a problem with her chelating iron/heme in her blood. The test results proved normal, despite the low numbers. She was on the iron supplement for nearly a year. Needless to say, taking iron tends to lead to constipation—a problem we already had.
The worst thing about her coming home was I only had a week left of my maternity leave. I fought hard for extra time, and they gave me 2 more weeks. I was pretty angry about it. Since she had come early, we hadn’t gotten daycare figured out, and she was on my insurance, and I had planned on keeping my job. We got The Grandparents to fill in after I went back to work, and eventually we got a spot in a daycare we liked.
2 days before she was ready to come home, she had an “episode”. I can’t really remember if it was an A or B, but I definitely remember the nurse not thinking it was anything, and me thinking “PLEASE don’t send her home if she’s not ready!”. I was extremely nervous about the homecoming. Jason was ecstatic.
Prior to our first visit with our daughter, a nurse met with me. She asked “do you know what it means to be premature?” I told her yes—it meant that she was tiny, and underdeveloped, and that she wasn’t strong and able like other babies. She looked relieved.
Nothing prepared me for my first visit to the NICU. It is a stark place—sterile, cold, busy, methodical, beeping…nothing like the warm, loving environment one envisions when seeing their new baby for the first time. We passed other parents at their babies’ bedsides, no one meeting our stare—and no one happy. Our daughter was in the fetal position, looking like a tiny little bug, with a little hat on and a preemie diaper that swallowed her, in a bright plastic enclosure. She was covered in tubes. My heart sank. I thought there was no way she was going to make it. I was afraid to name her. She was Handy, Girl for 2 days. She weighed 3 lbs, 5 oz, and if I had cupped my hand over her back, it would have covered her.
Those next two days were devastating. Every time you enter the NICU, you feel like it could be the worst moment of your life. Everyone can care for your baby but you. It is hopelessly depressing, especially in the beginning. Jason was very encouraging. He would stay close to me, smile at me, smile at our baby. I felt like the only way I could help her was to use my breast pump—which I did—but she wasn’t able to use the milk. I felt extremely useless, and blamed myself for my baby’s condition.
Lucky for me, I snapped out of it after those 2 days. We started Kangaroo Care, where you hold your baby against your skin, and that made me feel important. I decided that while I may not be a nurse or doctor, I am her ONLY mother—and that my job was to love her like a mother should, and no one else could do that. It gave me a sense of purpose, a source of strength, and a renewed sense of energy. We named her Elena Renee.
Elena remained in the NICU proper for 2 weeks. I stayed at the hospital during the day (I work in another wing, so I’d walk around between NICU visits and pumping), and my husband would come visit after he got off work. We learned how to change her diaper, monitor her progress, how to hold her and change her dressings. We learned how to watch her instead of the monitors when the alarms went off. When she started receiving nutrition (through a nasal tube), we’d follow how much she ate. She had 2 rounds of indomethicin to close her PDA, and had light therapy for jaundice. Overall she seemed to be doing well.
My first pregnancy wasn’t exactly planned. Let me rephrase that—it wasn’t unplanned, either—basically we had decided that we were ready to start a family, and so whenever that happened, it would happen. It took about a year.
I was never sick. I was extremely active—I played out the rest of my co-ed soccer season (playing at about 60% capacity), and kept teaching aerobics until I was 5 months pregnant. I walked to and from work, or rode my kick-scooter, about a mile each way. My husband and I traveled, including a trip to Paris when I was 5 months pregnant. There were no obvious defects in any of my doctors visits or ultrasounds—the baby was measuring slightly small, but both my husband and I are small, so there were no worries all around.
We went to Puerto Rico when I was 32 weeks pregnant. I had checked with the doctors beforehand, they said everything would be fine. I didn’t eat or drink anything I wasn’t supposed to. I don’t think this has anything to do with my early delivery, but since it was close, I figured I’d mention it.
A week later, we were at a bar for a friend’s birthday party. I went to the bathroom, feeling “not quite right”, and my underwear was wet, but not much. Still, since I felt kind of nervous, we left and I called my doctor. He said to call if anything changed.
I watched reruns of Law and Order for 3 hours. I had decided I was worrying about nothing, and decided to go to bed. I went to the bathroom one last time, and the wetness was slightly pink. I called the doctor.
“GET IN HERE.”I wasn’t exactly scared, b/c we figured, with anything pregnancy-related, things take time. So we just got our shoes on and got in the car. I figured they’d take a sample, send us home, and we’d wait for a couple days before they told us it was nothing. Well, at the bottom of the hill of our housing development, my water broke all over the (new) car. (Forget the “gush or trickle” business the birth class people tell you—if you were like me at 33 weeks, think more “gallons and gallons”.)
I arrived at the ER, having been diagnosed with a “gross hemmorage” of my bag of waters. They placed me in a hospital bed and put monitors on me to decide if I was going to go into labor. They said if I didn’t have contractions, they’d keep me right there and let me make more amniotic fluid, and keep the baby in as long as possible.
My contractions were 5 minutes apart. They strapped me to an ambulance gurney and said I’d be going to another hospital—the one I was in didn’t have a NICU, and I was going to need it.