Thursday, January 29, 2009
Working on things
I've shot a lot of video and pictures related to where Elena is now, hopefully to compare to where she will be in the future. I'll also be adding/fixing the timeline at the bottom of the page. Just wanted you all to know I haven't forgotten about that stuff. Being on bedrest prior to a crazy delivery and returning to work after Elena's sister Vivian was born was a big blur. Anyway, I should be updating weekly from now on.
To SDR or not to SDR, that is the question
Parents of kids with spastic diplegia know that fighting to get into their shoes/AFOs is a daily struggle. This was ameliorated for a while with Botox injections. Botox allowed Elena to have her feet flat for the first time, which allowed her AFOs to form an arch in her feet (previously she pronated so badly she didn’t have one) as well as give her a better foundation for balance. We had three rounds of Botox in total. Her last one (July 2, 2008) hardly took effect, despite the fact that more muscle groups were targeted (hip flexors and adductors in addition to the usual calf and soleus). We still had to struggle to flex her feet to put them in her AFOs—it was only marginally easier post-injections, and only for a month or so. Her AFOs were on the verge of being to small, and they were “old and worn”, as far as Velcro fasteners and plastic molding goes, so it didn’t take long for Elena to be back on her toes after putting on her AFOs/shoes.
I knew SDR was an option for Elena, I have since our orthopaedist told us after Elena’s second botox injection. The question for me was when to do it; I didn’t know (at the time) when Botox would stop working, and I was pregnant with our second child. Our doctor said to consider SDR when Botox was “off the table”. That was August of 2008. He amended that to “when Botox was off the table and AFTER the new baby is born”.
What is SDR?
Selective Dorsal Rhizotomy, for those who don’t know, involves severing nerve “rootlets” from the spine responsible for overstimulation to the muscles in the legs. Effectively, it can “permanently” (this has been debated) reduce spasticity. It is not a cure for cerebral palsy, and it is not recommended for all people who have CP. Good candidates for this treatment have all or most of the following: relatively symmetrical spastic diplegia, muscularly strong (not to be confused with just being “spastically tight”), easily motivated for PT, and still be young (preferably between ages 4 and puberty), and have parents that are committed to an intense PT schedule post-op. Elena is/has all of these. St. Louis Children’s has a great site.
SDR is not performed at every hospital—the percentage of patients who get this surgery is quite small, so even if a surgeon is trained, they may not have lots of experience with this procedure. Since it involves a judgement call, experience is a plus. Since it is “permanent” (quotations b/c spasticity can return, but not as great, and it takes a long time), there is a real risk of trading strength for mobility—kids can have the range to move, but be left without enough nerves to stimulate the muscles to support the desired movement. The ideal is to have a normal range of motion with the strength to support it, and that is not always achievable.
Team Opinions
My first course of action was to poll everyone who had anything to do with Elena as to their opinion of her as an SDR candidate:
Orthopaedic (surgeon): Strongly Pro. (Of course! He cuts into people for a living!) He said she’s a great candidate, and it would reduce her need for future surgeries (not all).
Neurosurgeon 1: Pro. Probably strongly pro, but he’s not pushy. He thinks she can really benefit from the procedure, and it should alleviate the need for some (probably not all, but maybe) future surgeries.
Neurosurgeon 2: Pro. Probably strongly pro, but also not pushy. Said that he thought E would benefit tremendously, but reminded me—cutting nerves is a very painful procedure. Said that E was a natural with PT and her movement patterns were good, and he has never had a patient that wasn’t the same kid (psychologically) post-SDR as they were pre-. The longest it took a kid to mentally recover, in his practice, was 2 days.
Main PT: Cautiously Pro. She understood Elena was a good candidate, but she was concerned about interrupting her current progress (PT and school) and wondered how she would cope psychologically. Wanted her to be older/stronger.
Orthotist: Pro. He said future bracing can’t keep her in her shoes, and SDR would allow her to have a good support for balance, and would help keep her soles/feet in line, therefore preserving her knee and hip joints as well as possible.
Auxiliary PT1: Cautiously Pro. Had lots of experience with kids pre/post SDR. Strongly Pro if using the head surgeon from her former location.
Auxiliary PT2: Con. Worried about the permanency of the procedure. Elena was already so functional, why mess with what works (albeit, works not as well as those without CP). Didn’t think it was worth the risk.
Auxiliary PT3: Pro. Thought E was a great candidate and would benefit tremendously. Not worried about E’s psychological state, said she was one of the best prepared she’d worked with.
Auxiliary PT4: Con. Thought it was better to work with what we had then try to give Elena a new body to learn to move. Said there was never surgery without risk. Interestingly, he is also impaired (including legs) from a brain injury during adolescence.
Developmental Pediatrician: Pro. She’s distant/impartial, but seems to think it’s a good idea.
Regular Pediatrician: Pro. He thinks we’ve weighed all options and thinks SDR is the right call, given her tightness and strength and motivation.
Finding a good neurosurgeon
Before her last Botox shots (July 2008), I decided to go on a hunt for a neurosurgeon do perform SDR.
I checked here, at UVA first. Dr. Elias does SDR. He does about 3 a year. He is one of the top neurosurgeons in the country, but his specialty is epilepsy. I liked him, but wanted a second opinion—how was I supposed to figure out if he was the best person for the job?
The recommendation from one of Elena’s PTs was for Dr. Tae-Sung Park. She used to work with him, and he has seen every type of CP kid there is. He is located at the Children’s hospital in St. Louis. He has “pioneered” what is the modern-day SDR procedure (smaller incision site, etc) and hands-down has the most experience. This seemed just fine, except for the fact that I am absolutely scared to death of flying, and our-in town neuro (Elias) was taught by Park. I wondered about Dr. Park’s age and notoriety—he could retire, and Elena isn’t exactly a high-profile case. She’s not going to be some poster-child for impairment-to-normal-gait type of change, so I wasn’t sure if Dr. Park would actually be the one to operate. If not, well…maybe his team would be better than other surgeons, since it’s Park’s team. How was this different than Elias? Hmm. St. Louis also does NOT take my insurance. The procedure runs about $50,000. I didn’t want to make this about the money—we would find a way to pay if Park is the best person for the job. But I wasn’t sure if that was true.
Our orthopaedic surgeon didn’t seem to recommend Dr. Park. He said he had changed his criteria for selecting SDR candidates, and had become a little more lenient in his selection. Meaning, if you weren’t as strong or symmetrical or whatever, he’d still consider SDR even though other surgeons wouldn’t. This was a red flag for our ortho. He had a lot of confidence in Elias. I still wasn’t convinced that there wasn’t some bad blood or something between our ortho and Park, so I continued to look for information.
I made an appointment at Duke neurosurgery. I spoke to Dr. Fuchs, who does more SDR procedures/year than Dr. Elias does. He’s very easy to talk to and spent a lot of time with me. He echoed our orthopaedist’s concerns regarding Dr. Park. Not because he had any personal problem with the man, but because he considered Park to be more aggressive of a neurosurgeon than he used to be. For a child like mine, this was a big deal—Elena is highly functional, and I wanted a more conservative surgeon (that’s not to say that Park wouldn’t do an excellent job). Fuchs had knowledge of Elias, and had very good confidence in him and the UVA staff. He also mentioned the truth of having everything Elena needed in my home town, and the benefits of staying local. He also said the best way to find out about a surgeon for something like this isn’t to ask the surgeon or their staff—it’s to ask the patients. That’s slightly problematic, given doctor-patient confidentiality, but some centers will contact former patients to see if they would be willing to talk with me. So that was my next job.
Over the next few months, I had the opportunity to talk with 5 mothers of SDR patients. 3 of them had their procedure done by Dr. Park, and couldn’t be more happy with their experience. One child was 2 yrs old when she had SDR, and her legs were “scissored” all the time—she’s going to college this year, and was on the cheerleading squad in high school, and was skiing at the time I talked to her mother. She uses loftstrands for long distances, and that’s it. Another was a boy who had it when he was 6 or 7. Now he plays baseball—granted, he’s not the best on the team, but he’s ON THE TEAM. He’s had 2 heel cord lengthenings post-SDR. Another was a girl who had it done when she was 5 or so. She uses loftstrands now also, but can run and jump and all that. They all did warn me of the immediate aftermath of SDR, with their children slumped over in wheelchairs, drooling, due to weakness/change in balance. These candidates seemed more impaired than Elena, although the two older children could already walk before the procedure.
The other two had their surgeries with Elias. They did not experience any of this extreme “floppiness” post-SDR, although there is no way to determine if that is due to the child or the surgeon (or anesthesia). The first child was a boy, he was 3 at the time of the procedure, and he could not walk at all independently and was crouching very very badly which made using a walker very difficult. He was officially GMFCS 3. A year later, he is taking a few independent steps at a time (5-10) and no longer crouches. They have been doing PT (or some other athletic activity) 5x/week since the surgery. The second child, also a boy, had the procedure done when he was 5 and his feet turned so badly inward (pigeon-toed) he fell constantly and could not walk on any surface that wasn’t perfectly flat and was still in diapers. Now, even though his feet are still turned inward, his balance has improved amazingly and he can run up hills, curbs and run and jump and is now potty trained.
All the parents had intense praise for their respective surgeons.
Now What?
Here’s what I know: Elena is a good candidate. She’s great with PT. She’s had to get used to new legs twice already (post-botox) and did fantastically. She’s had three surgeries already (eyes), and isn’t nervous about doctors b/c we are honest with her when she asks questions about her operations. I was on bedrest for 2 months, and she saw in the hospital and understood why I was there, why I couldn’t move, and that I’m fine now. I know that if we do NOTHING, Elena will be alright (mentally). I also know that she absolutely will have future surgeries, to lengthen her tendons, or fuse her ankle bones, or fix a hip dislocation or something like that if we don’t do anything. She’ll probably need surgeries even if we do SDR; but SDR has the potential to alleviate the spasticity that would cause lots of future problems. I’m pretty sure that it’s not going to get easier for her to psychologically deal with the surgery or PT afterwards for many years—and then, it may be too late to avoid/lessen issues related to tendon length or joint stability. She is strong now, motivated now, young now, and her body (jointwise) is in great shape now.
Still...my girl Elena is a wonderful child. She’s happy, even though she knows she doesn’t move like the other kids. But she gets tighter all the time.
My anxieties revolve…
E's a great kid.
She moves pretty well for a kid with CP.
She's getting worse.
Repeat.
I have a chance to give her the best, most normally functional body she can have. If there is always a risk with surgery, I have a chance to reduce the number of surgeries=reduce the number of risks. Now is a good time.
I scheduled her surgery date for February 18th, 2009 with Dr. Elias. I picked him for several reasons: he was local, he was well recommended, he was conservative, he’d seen Elena several times before her procedure so he knew her functionality well, he was plugged into the PT/children’s hospital network here, UVA takes my insurance, and Elena’s friends and family and therapists are all close by.
I knew SDR was an option for Elena, I have since our orthopaedist told us after Elena’s second botox injection. The question for me was when to do it; I didn’t know (at the time) when Botox would stop working, and I was pregnant with our second child. Our doctor said to consider SDR when Botox was “off the table”. That was August of 2008. He amended that to “when Botox was off the table and AFTER the new baby is born”.
What is SDR?
Selective Dorsal Rhizotomy, for those who don’t know, involves severing nerve “rootlets” from the spine responsible for overstimulation to the muscles in the legs. Effectively, it can “permanently” (this has been debated) reduce spasticity. It is not a cure for cerebral palsy, and it is not recommended for all people who have CP. Good candidates for this treatment have all or most of the following: relatively symmetrical spastic diplegia, muscularly strong (not to be confused with just being “spastically tight”), easily motivated for PT, and still be young (preferably between ages 4 and puberty), and have parents that are committed to an intense PT schedule post-op. Elena is/has all of these. St. Louis Children’s has a great site.
SDR is not performed at every hospital—the percentage of patients who get this surgery is quite small, so even if a surgeon is trained, they may not have lots of experience with this procedure. Since it involves a judgement call, experience is a plus. Since it is “permanent” (quotations b/c spasticity can return, but not as great, and it takes a long time), there is a real risk of trading strength for mobility—kids can have the range to move, but be left without enough nerves to stimulate the muscles to support the desired movement. The ideal is to have a normal range of motion with the strength to support it, and that is not always achievable.
Team Opinions
My first course of action was to poll everyone who had anything to do with Elena as to their opinion of her as an SDR candidate:
Orthopaedic (surgeon): Strongly Pro. (Of course! He cuts into people for a living!) He said she’s a great candidate, and it would reduce her need for future surgeries (not all).
Neurosurgeon 1: Pro. Probably strongly pro, but he’s not pushy. He thinks she can really benefit from the procedure, and it should alleviate the need for some (probably not all, but maybe) future surgeries.
Neurosurgeon 2: Pro. Probably strongly pro, but also not pushy. Said that he thought E would benefit tremendously, but reminded me—cutting nerves is a very painful procedure. Said that E was a natural with PT and her movement patterns were good, and he has never had a patient that wasn’t the same kid (psychologically) post-SDR as they were pre-. The longest it took a kid to mentally recover, in his practice, was 2 days.
Main PT: Cautiously Pro. She understood Elena was a good candidate, but she was concerned about interrupting her current progress (PT and school) and wondered how she would cope psychologically. Wanted her to be older/stronger.
Orthotist: Pro. He said future bracing can’t keep her in her shoes, and SDR would allow her to have a good support for balance, and would help keep her soles/feet in line, therefore preserving her knee and hip joints as well as possible.
Auxiliary PT1: Cautiously Pro. Had lots of experience with kids pre/post SDR. Strongly Pro if using the head surgeon from her former location.
Auxiliary PT2: Con. Worried about the permanency of the procedure. Elena was already so functional, why mess with what works (albeit, works not as well as those without CP). Didn’t think it was worth the risk.
Auxiliary PT3: Pro. Thought E was a great candidate and would benefit tremendously. Not worried about E’s psychological state, said she was one of the best prepared she’d worked with.
Auxiliary PT4: Con. Thought it was better to work with what we had then try to give Elena a new body to learn to move. Said there was never surgery without risk. Interestingly, he is also impaired (including legs) from a brain injury during adolescence.
Developmental Pediatrician: Pro. She’s distant/impartial, but seems to think it’s a good idea.
Regular Pediatrician: Pro. He thinks we’ve weighed all options and thinks SDR is the right call, given her tightness and strength and motivation.
Finding a good neurosurgeon
Before her last Botox shots (July 2008), I decided to go on a hunt for a neurosurgeon do perform SDR.
I checked here, at UVA first. Dr. Elias does SDR. He does about 3 a year. He is one of the top neurosurgeons in the country, but his specialty is epilepsy. I liked him, but wanted a second opinion—how was I supposed to figure out if he was the best person for the job?
The recommendation from one of Elena’s PTs was for Dr. Tae-Sung Park. She used to work with him, and he has seen every type of CP kid there is. He is located at the Children’s hospital in St. Louis. He has “pioneered” what is the modern-day SDR procedure (smaller incision site, etc) and hands-down has the most experience. This seemed just fine, except for the fact that I am absolutely scared to death of flying, and our-in town neuro (Elias) was taught by Park. I wondered about Dr. Park’s age and notoriety—he could retire, and Elena isn’t exactly a high-profile case. She’s not going to be some poster-child for impairment-to-normal-gait type of change, so I wasn’t sure if Dr. Park would actually be the one to operate. If not, well…maybe his team would be better than other surgeons, since it’s Park’s team. How was this different than Elias? Hmm. St. Louis also does NOT take my insurance. The procedure runs about $50,000. I didn’t want to make this about the money—we would find a way to pay if Park is the best person for the job. But I wasn’t sure if that was true.
Our orthopaedic surgeon didn’t seem to recommend Dr. Park. He said he had changed his criteria for selecting SDR candidates, and had become a little more lenient in his selection. Meaning, if you weren’t as strong or symmetrical or whatever, he’d still consider SDR even though other surgeons wouldn’t. This was a red flag for our ortho. He had a lot of confidence in Elias. I still wasn’t convinced that there wasn’t some bad blood or something between our ortho and Park, so I continued to look for information.
I made an appointment at Duke neurosurgery. I spoke to Dr. Fuchs, who does more SDR procedures/year than Dr. Elias does. He’s very easy to talk to and spent a lot of time with me. He echoed our orthopaedist’s concerns regarding Dr. Park. Not because he had any personal problem with the man, but because he considered Park to be more aggressive of a neurosurgeon than he used to be. For a child like mine, this was a big deal—Elena is highly functional, and I wanted a more conservative surgeon (that’s not to say that Park wouldn’t do an excellent job). Fuchs had knowledge of Elias, and had very good confidence in him and the UVA staff. He also mentioned the truth of having everything Elena needed in my home town, and the benefits of staying local. He also said the best way to find out about a surgeon for something like this isn’t to ask the surgeon or their staff—it’s to ask the patients. That’s slightly problematic, given doctor-patient confidentiality, but some centers will contact former patients to see if they would be willing to talk with me. So that was my next job.
Over the next few months, I had the opportunity to talk with 5 mothers of SDR patients. 3 of them had their procedure done by Dr. Park, and couldn’t be more happy with their experience. One child was 2 yrs old when she had SDR, and her legs were “scissored” all the time—she’s going to college this year, and was on the cheerleading squad in high school, and was skiing at the time I talked to her mother. She uses loftstrands for long distances, and that’s it. Another was a boy who had it when he was 6 or 7. Now he plays baseball—granted, he’s not the best on the team, but he’s ON THE TEAM. He’s had 2 heel cord lengthenings post-SDR. Another was a girl who had it done when she was 5 or so. She uses loftstrands now also, but can run and jump and all that. They all did warn me of the immediate aftermath of SDR, with their children slumped over in wheelchairs, drooling, due to weakness/change in balance. These candidates seemed more impaired than Elena, although the two older children could already walk before the procedure.
The other two had their surgeries with Elias. They did not experience any of this extreme “floppiness” post-SDR, although there is no way to determine if that is due to the child or the surgeon (or anesthesia). The first child was a boy, he was 3 at the time of the procedure, and he could not walk at all independently and was crouching very very badly which made using a walker very difficult. He was officially GMFCS 3. A year later, he is taking a few independent steps at a time (5-10) and no longer crouches. They have been doing PT (or some other athletic activity) 5x/week since the surgery. The second child, also a boy, had the procedure done when he was 5 and his feet turned so badly inward (pigeon-toed) he fell constantly and could not walk on any surface that wasn’t perfectly flat and was still in diapers. Now, even though his feet are still turned inward, his balance has improved amazingly and he can run up hills, curbs and run and jump and is now potty trained.
All the parents had intense praise for their respective surgeons.
Now What?
Here’s what I know: Elena is a good candidate. She’s great with PT. She’s had to get used to new legs twice already (post-botox) and did fantastically. She’s had three surgeries already (eyes), and isn’t nervous about doctors b/c we are honest with her when she asks questions about her operations. I was on bedrest for 2 months, and she saw in the hospital and understood why I was there, why I couldn’t move, and that I’m fine now. I know that if we do NOTHING, Elena will be alright (mentally). I also know that she absolutely will have future surgeries, to lengthen her tendons, or fuse her ankle bones, or fix a hip dislocation or something like that if we don’t do anything. She’ll probably need surgeries even if we do SDR; but SDR has the potential to alleviate the spasticity that would cause lots of future problems. I’m pretty sure that it’s not going to get easier for her to psychologically deal with the surgery or PT afterwards for many years—and then, it may be too late to avoid/lessen issues related to tendon length or joint stability. She is strong now, motivated now, young now, and her body (jointwise) is in great shape now.
Still...my girl Elena is a wonderful child. She’s happy, even though she knows she doesn’t move like the other kids. But she gets tighter all the time.
My anxieties revolve…
E's a great kid.
She moves pretty well for a kid with CP.
She's getting worse.
Repeat.
I have a chance to give her the best, most normally functional body she can have. If there is always a risk with surgery, I have a chance to reduce the number of surgeries=reduce the number of risks. Now is a good time.
I scheduled her surgery date for February 18th, 2009 with Dr. Elias. I picked him for several reasons: he was local, he was well recommended, he was conservative, he’d seen Elena several times before her procedure so he knew her functionality well, he was plugged into the PT/children’s hospital network here, UVA takes my insurance, and Elena’s friends and family and therapists are all close by.
Monday, December 22, 2008
Big Decision, mostly made
I have been wrestling with myself daily for about a year now regarding a procedure for Elena. I decided (well, made a surgery date) for E to undergo Selective Dorsal Rhizotomy early 2009. I'll comment more about it before and after the procedure. If anyone has done this--or decided not to, I would welcome your comments.
Eye Surgery #3
Elena had her third eye surgery with Dr. P on October 29th, 2008. She is definitely getting smarter when it comes to her appointments...she knew she was going to have an operation. She waited until the day before she and Jason left for Northern Virginia to ask me The Question: "Will this hurt?" I told her a little, and then her eyes will feel a little scratchy...and after her nap she'll be fine.
Overall her attitude was great--until she was carried into the OR and the doors closed. Then Jason could hear her crying. She was pretty good when she woke up, though.
The results were quite good--but that was true last surgery, too. I have seen her on two occasions "drift" since the procedure. One eye (at a time?) seems to drift "upward" these two times. This happened before and it resolved itself. I can only hope that the third time's the charm, and eventually her eyes resolve to stay together.
Saturday, October 25, 2008
(Specialized) Equipment
There are lots of neat toys and equipment that babies seem to enjoy...but that our therapists have warned us are not appropriate for someone with issues like Elena.
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
Bad
Dolly stroller, flimsy-type. Moves WAY to fast, E kept falling on her face.
Good
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.
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
Bad
Dolly stroller, flimsy-type. Moves WAY to fast, E kept falling on her face.
Good
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.
Care providers for Elena
This is a short/ongoing list of providers for Elena. Different places have different names for some of the programs or positions, but these are the ones we have:
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
Jeff Elias—neurosurgeon
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)
Duane Bickers—dentist
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)
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