TAOS Fitting

Bertrand was fitted for and received his TAOS today. He is the 6th child in the state of Utah to receive one. He was a great sport throughout the 2 hour fitting process, and was gracious enough to take some steps for the camera. We look forward to capturing more precious steps of his in the future. :)

Wow! This month has already been one of many firsts and it is only April 2nd!

Juggling

It's hard to believe that sweet baby almost gave her brother a black eye! She was trying to feed him his bottle.

It feels like I am juggling--more so than usual. Bertrand is doing well and we want to take advantage of his receptiveness. Of course, this isn't straightforward. Here are some of the items on my mind:

• Valium Protocol - The epileptologist finally called me back! She had not forgotten to call in Bertrand's prescription. She had just forgotten to call to tell me she had changed her mind. She wants Bertrand to commence the valium protocol inpatient. I am scrambling to schedule that next week during his spring break.

• Aqua-therapy - Miss A, Bertrand's home physical therapist, is studying aqua-therapy. And Bertrand starts it with her today! (We've tried for years to get Bertrand in with a local aqua-therapist without luck.) I am scrambling to get a +1 membership to our local pool.

• Power Wheelchair Training - Also with Miss A, Bertrand has been making lots of progress with the practice power wheelchair at Shriners. We are going to touch base with the therapist in charge of chair evals at Shriners on Monday. Scrambling to get last minute practice in.

• TAOS - On Monday morning Bertrand will be fitted with his TAOS! Fingers crossed. I've watched the parent information video about 10 times now. I think I could put Bertrand in it in my sleep.

• Medical Care Meeting - In about 2 weeks, I will be meeting with Bertrand's pediatrician to talk about the quality and management of his medical care. I'll probably share my list of concerns before then.

• Saying Goodbye - Yesterday, I received the sad and unexpected message that Bertrand's fabulous mobility therapist was being transferred. This seems thoughtless and potentially damaging on the part of the Salt Lake School District. Bertrand loves his Miss Liz. It takes a looong time to earn Bertrand's love. There is almost no chance that with only 2 months left in the school year he will adapt to another person. Or that another person will learn how to best communicate and work with him. Losing Miss Liz could arrest not only Bertrand's progress but that of the other kids in his class. I hope that the district sees it's folly and let's us keep Miss Liz!

So there you have it. Lots of scrambling and some worrying (hopefully unnecessarily) on my part. Wish us luck! And you better believe there will be some aqua-therapy pictures here tomorrow. :)

TAOS Evaluation

A 5 year-old girl named Karlee in her TAOS. Image from here.

Last Wednesday, Bertrand was evaluated and measured for a TAOS (Therapeutic Ambulatory Orthotic System). It is a combination of an orthosis and a mobility base. We'd seen mention of TAOS online in the blogosphere for a number of years, but seeing it in person at the Abilities Expo really impressed us.

The orthosis ensures the child's legs and torso are kept in proper alignment and the mobility base supports the child in a standing (or sitting) position. With Bertrand's right hip 60% subluxed, proper alignment is important. But, it is almost impossible to maintain in his current stander. The TAOS seems like a great solution.

There is only one orthotic provider in Utah currently set-up to fit the TAOS. Fortunately, the office is only 25 minutes from our house. The evaluation primarily tested his weight-bearing, stepping reflex, and tone. The measurements were then taken when Bertrand was determined to be a good candidate for the system. I am waiting to hear back from their financial department this week so the order can be placed.

Scoliosis Reversing?

Recently, as confirmed by the orthopedist last week, Bertrand's back hasn't been looking bad. In fact, could it be looking better?

Look at the photo above of Bertrand playing today. You can see how straight he is sitting. I just barely see the curve. Are my eyes not seeing right? Am I going crazy? (Well, crazier?)

I am very curious to hear what the folks at Now I Can say about his back & hips tomorrow. Bertrand has taken his homework very seriously! And, I'm so excited for Miss A & Miss V to meet our beloved Sergio, Natalie, and gang! :)

No steps backward!

With Bertrand's medical care, I often feel that for every step forward, there is at least one (or more) steps backward. This week was a good week because there were no steps backward!

Orthopedics:

Bertrand saw the chief orthopedic doctor at Shriners hospital yesterday. We got good news:

• Bertrand's tone is a bit low but good.
• Bertrand's subluxated hip has no tightness and full range of motion, so he doesn't anticipate any kind of intervention (surgical or injection) being necessary!
• Bertrand's spine can still straighten when laying down. There is only a 30 degree curve when sitting slumped--which anyone could have if they slumped.
• Bertrand should only wear his back brace if he'd otherwise be sitting slumped for a prolonged time. Strengthening his back and abdomen muscles is the best prevention.

Ophthalmology:

Bertrand saw the young, insightful doctor again, this morning. She'd been thinking about him:

• Bertrand failed the corneal sensitivity test. THREE times.
• Bertrand continues to require a LOT of lubrication.
• Bertrand should get a pair of moisture chamber goggles for daytime use.
• Bertrand should try tranquileyes for nighttime use. (Testing this tonight!)

Neurology:

After another round of phone calls, I FINALLY got someone to schedule Bertrand's EEG. The soonest available was February 24 - 26, which avoids missing school, so I took it.

A Tale of Mama's Instinct

Titi Aury reads to Bertrand.

Remember back in March how Bertrand was facing the prospect of phenol injections in his right adductor muscle to help with his hip subluxation? How I cancelled the appointment just a few days beforehand because I didn't feel right about it?

Well, today was Bertrand's 6 month follow-up, and my actions were justified in a big way! His subluxation has stayed the same and, very significantly, his adductors are not tight AT ALL.

So, muscle tightness isn't to blame for the subluxation! Phenol injections would've been ALL pain for NO gain. Going forward, all we can do is keep him standing as much as possible & keep an eye on his hips. Surgery may still be in his future (but I doubt it).

To my great relief, Bertrand is being fitted for a soft back brace tomorrow to help with his spinal curve. Currently, it's a functional, as opposed to structural, curve. In 6 months, he is seeing a spine specialist & may move to either a corrective brace (worn at night) or a form of serial casting therapy.

My mommy spidey sense tingles with the belief that this posture correction may help Bertrand's hip more than just about anything. Let's see if I can go 2 for 2 on orthopaedics. :)

Bertrand's Right Hip - The Remix

Bertrand wearing his St. Patty's day best.

At Bertrand's most recent physical therapy session, I brought up my concerns about his right hip with his therapist. She has been working with Bertrand since he was a little more than a year-old. She was shocked that doctors considered him a candidate for phenol injections.

His therapist works with many children who receive the injections, thinks the injections work great when indicated, and agreed that for the right adductor muscle phenol would be the correct choice because botox really works best for smaller muscles.

However, Bertrand's subluxation has not changed in years (she thinks it may simply be the way his hip formed), he has full range of motion in that hip, negligible spasticity (it's only an issue during an exam when he starts to fight rather than during normal use), and he is in no pain.

I felt a huge sense of relief because it seems that canceling Bertrand's injection appointment was the right choice. Doctors can only go by what they see in a 30 minute appointment, every 6 months. Bertrand's therapist has seen him for an hour, twice a month for 2 years! I trust her take on his hip's functionality more than the MD's.

Going forward, the plan doesn't change. It's all about standing, standing, standing! We've already made small, but not insignificant, progress in both Bertrand's standing and weight-loss. Bertrand never ceases to inspire and amaze me. :)

Botox, phenol or surgery! Oh, my!

Bertrand slacks-off while Mama changes his sheets. ;)

His depakote dose was increased to 250mg today.

This morning, Bertrand had a fantastic occupational therapy session during which his therapist summarized that B's biggest improvement the past few weeks has been in attitude. He is happy, engaged, willing to initiate, not as prone to overstimulation, persistent and forgiving. He hasn't really had any motor breakthroughs yet but, thanks to his positive attitude, she feels certain that breakthroughs will come.

That was followed-up by an appointment with Bertrand's rehabilitation doctor. Bertrand's right hip is subluxated between 50 and 60%. This is due to spasticity in the right adductor muscle because Bertrand doesn't stand. (As the old saying goes: if you don't use it, you lose it.) If Bertrand ever wants to crawl, walk, use his right hip, or even just not be in pain, we need to keep it from further subluxation. This poses a parent dilemma.

To deal with the subluxation, we have to deal with the spasticity or end-up in surgery. The surgery is a major one with a substantial recovery time. The other standard options for dealing with spasticity are botox and/or phenol injections. We know many kids who successfully receive them. Each has their pros and cons. The doctor feels that phenol would be best in Bertrand's case. Both of these injections will hurt. Both will wear off.

[And, in large quantities, both have killed millions of people historically. *Shudder*]

Obviously, I don't want Bertrand to lose his option to walk or crawl someday, or to be in pain, or for him to undergo a major surgery (with a long recovery time) to fix a problem that could've been prevented less invasively, such as through an injection.

So, I made Bertrand's phenol injection appointment for Friday of next week.

But something just doesn't feel right--call it my mommy-spidey sense.

Bertrand's subluxation hasn't worsened in 6 months despite a broken leg.

I think I want to give therapy a chance to work first.

I want to give Bertrand, with his new can-do attitude, a chance to do something without another painful intervention.

I know this will take dedication from more than just me.

It will take Bertrand's Daddy, and his Titi Saby, and his Nana, and his therapists, and his team at school... but Bertrand deserves a trial period.

Bertrand sees his orthopedist again in July. He'll get new hip x-rays then. That means just 4 months to get him standing at least 2 hours a day and to keep that hip from getting worse.

I believe he can do it.

Am I crazy?

We'll see in 4 months.

Plan for Better Bones

Bertrand tearing into his Valentine's haul from school.

Bertrand had a fabulous physical therapy session at Shriners and afterward we had an appointment to discuss Bertrand's bone health with his pediatrician. Not only are broken bones painful for Bertrand, but they set him back developmentally--he has yet to recover fully from his broken leg in October. Bertrand broke both his humerus (upper arm) and his femur (upper leg) in 2010, so we want to plan to prevent additional breaks.

The discussion with his pediatrician went fantastically well. We covered topics including: water therapy, weight bearing, vibration therapy, vitamin D, calcium & phosphorous supplementation, bisphosphinate injections, medication interaction (prevacid, depakote), & more.

His pediatrician believes that Bertrand does have low bone density (just like any other child with a neurological disorder would have), so a dexascan wouldn't reveal anything new. However, his breaks have occurred in very typical locations for a child his age and his last bone break may have been due to a growth spurt. Therefore, she is not convinced that his bones are that bad.

Furthermore, Bertrand is still young, he is doing way better than expected (yay!) and there is a lot we can do to build his bones naturally--which would be less brittle than bone created through something like bisphosphinate injections.

Bertrand's Plan for Better Bones:

• Supplementation: We'll do a 3 day food diary to estimate his current calcium, vitamin d, and phosphorus intake. We don't want to overdo the calcium because Bertrand is prone to kidney stones, but we do want to optimize the calcium while bombing his system with vitamin D. We'll adjust his diet accordingly.
• Medication: Along with monitoring levels of vitamin D, calcium, etc., we'll also keep an eye on medication levels and limit those with negative interactions whenever possible. Bertrand will have a Ph test done during his EGD in early March to see if staying on prevacid is necessary now that he is older.
• Sunshine: While sunburns are a big no no, Bertrand will be encouraged to spend lots more time outside with minimal sunscreen to improve vitamin D absorption.
• Water Therapy: To encourage weight bearing with minimal resistance, Bertrand will begin water therapy. This task is being gratefully delegated to Bertrand's Nana, who is a swimmer & enjoys the water. (I detest pools, the beach, and even bathtubs.)
• Stander Time: Bertrand will have his stander re-adjusted at Shriners and we'll become religious about building up his tolerance back up to 2 hours in the stander daily.

PS - Bertrand's pediatrician will take Victoria (Bertrand's sister due in April) on as a new patient even though her office says that she is not taking any more! :) It is such a relief that any early warning signs will be caught!

PPS - Bertrand is back to having horrible drop seizures and myoclonus. We're hoping that he's either sick, or it's the increase in Lamictal, or the drop of the Zonegran, and not his pharmacoresistance rearing its ugly head again. He'll be seeing his neurologist tomorrow. We'll be talking depakote.

Bertrand's Bones

Comparison of Bertrand's January 2011 and July 2010 hip x-rays.

Bertrand had his orthopaedic follow-up at Shriners Hospital today. The main point of concern is his right hip. It is subluxated 50%. Fortunately, it hasn't gotten worse since his last appointment even with the break of his right femur in October. "Stable" is the word of the month!

The issue of bone density always comes up at these visits. Every orthopaedic surgeon we've spoken to has said that a dexascan under the age of 5 but especially under the age of 3 is misleading. Fortunately, there is *one* pediatrician in town whose research specializes in bone density issues and treatments who can read such early dexascans--Bertrand's very own pediatrician! As a result, we'll be following-up with Bertrand's pediatrician through Shriners (rather than Primary Children's Medical Center) in February.

The best things for Bertrand's hip and bone density include reducing factors which negatively affect bone density and performing weight bearing exercise. This dovetails nicely into our treatment plan from Cleveland Clinic which eliminates zonegran, the ketogenic diet, & prevacid (all decrease bone density). And, there will be a renewed emphasis on weight bearing in our household in the form of scheduled Tuesday, Thursday, Saturday and Sunday stander time.

If these things don't help Bertrand's hip then surgery may be in his future. However, before that point, it appears that botox would be an option. Botox would be injected into his groin muscle in hopes of relaxing it sufficiently that the femur ball could settle back into the hip socket. The results of this are temporary. We'll be seeing Bertrand's rehabilitation doctor through Shriners in March to discuss both surgery and botox options.

Lastly, Bertrand's spinal curve, possible vest brace and wheelchair were discussed, along with disability certification. Oh, and of course today was the day the Shriners' public relations folks were taking professional photographs of patients for their literature, website, etc. So, now they have pictures of Bertrand and me (hair uncombed, covered in dog hair, dark circles under eyes, etc.) which should evoke plenty of pity and donations for the hospital. :)

Ortho, Pediatrics & Neuro! Oh my!

Bertrand's femur.

Most of the time, I am shocked by how little is accomplished in one day. This morning, I was shocked by how much was accomplished in one hour.

8:00AM Orthopaedics

Bertrand got an x-ray and was seen by doctor Dr. Stephanie Holmes. (Out of the 4 orthopaedic doctors we've seen at Primary Children's Medical Center, Dr. Holmes is my favorite.) She cleared Bertrand's use of the stander (2+ hours, start slow), recommended some stretching, and mentioned permiginate IV as something we should discuss with B's pediatrician. Dr. H's thought is that the bone created with permiginate is more brittle, which may not be what we want as a part of Bertrand's issue is that he doesn't brace himself when he falls.

8:30AM Pediatrics (& Starbucks)

Bertrand's stuffy nose disappeared last night, so this was simply a paperwork run. Bertrand delivered several forms for his pediatrician to fill-out, including his Utah DMV Form TC-842 "Disabled Person And Physician Disability Certification" to apply for a disabled person's car plate or placard. That his disability is deemed "permanent" rather than "temporary" (yes, the doctor has to check a box) was a bit depressing for me, so that led to a pumpkin spice latte--the ultimate comfort drink--at the hospital Starbucks.

8:45AM Neurology

At the elevator we ran into Bertrand's neurologist. She didn't like the way Bertrand was looking or how tired he was. She asked after his genomic sequencing (results come January) and was unhappy to hear he'd suffered another break. She wants Bertrand to have a dexascan. Furthermore, she said she'd follow-up with her colleagues at Johns Hopkins to see who the best 2nd opinion on Bertrand's myoclonic-astatic-epilepsy (MAE / Doose Syndrome) would be, so she could write us a referral. In her opinion Bertrand isn't getting worse but he isn't improving. "When I run into my patients I think it's fate trying to tell me something."

Clearly, fate approved my Starbucks run. ;) I hope to hear from the neurologist soon, but if not, I foresee a follow-up email later today! In the meanwhile, I need a nap.

First successful orthotic fitting!

Bertrand was fitted for his first set of ankle-foot orthoses (AFOs) at Fit-Well Prosthetic & Orthotic Center today. Also known as braces, AFOs are usually plastic, encompassing the ankle joint and all or part of the foot. AFOs are externally applied, and are intended to control position and motion of the ankle. They can also be designed to control the knee joint indirectly.

Both of Bertrand's legs were fitted because of tightness in the ankles--his left ankle was getting particularly bad which was affecting his knees and spine. We chose the Cascade DAFO brand in part because they were highly recommended and also because, thanks to their thinner plastic, they would work well for daytime and nighttime use. He may grow out of them sooner, but we think they're worth it.

Bertrand looked a bit worried before the fitting started.

With all the scissors, saws, gloves and electrical tape?! being amassed on the table, I was a bit worried too!

But once the fitting started, Bertrand was all smiles. I guess the socks tickled?

The double layer of "socks" protecting Bertrand's leg.

Mama stabilizing Bertrand's knee and Bertrand surprisingly letting her.

The cast material being set on the leg.

Bertrand was very intrigued by the entire process.

Cutting the finish mold off with a cast saw. Yikes!

An almost finished mold!

A few more snips before the mold can be removed, packed and shipped.

And this is how Bertrand got through the second leg being cast: a powerful combination of Elmo and iPad. Together they could rule the world--according to Bertrand.

And this is the design Bertrand chose for his new AFOs!

Orthopaedic Follow-up

Oh, how I wish I had taken a picture of Bertrand's follow-up x-ray today! However, when I saw it, I was too shocked to take one.

I was standing behind one x-ray technician at the computer while the technician with the lead vest positioned Bertrand for the photos. A giant bone-like cauliflower was taking up an entire half of Bertrand's upper arm! The tiny fracture was no where to be seen, but a giant mass was in it's place!? It was freakish--and I was deeply disturbed. And then, when they went to position Bertrand for a different angle, the computer tech said to the other, "be careful, there is a lot of pathology on that arm." WTF?!

Bertrand and I are in the exam room with the ortho resident, who hems, haws, and then admits that the x-rays didn't look normal to him and that Dr. Jones--the orthopaedic ONCOLOGY specialist--needs to take a longer look at them. (At this point I called Matthew because, with the direction the news seemed to be taking, I wasn't sure I'd be safe to drive home.)

Dr. Jones walks in with a big smile and says, "Bert, your arm is healing like gang busters!"

If I could've melted into a puddle on the floor from the relief, I would have.

Dr. Jones then explained that people with neurologic issues, such as seizures, cerebral palsey or even spinal cord injury, heal bones very differently than normal people. They tend to accumulate even more bone density than before the fracture. My dear son Bertrand was on the extreme end of even this spectrum, and appears to be creating some kind of super bone. He won't be breaking that sucker ever again. :) The giant cauliflower of bone should eventually smooth-out and become better intergrated with the rest of his humerus.

Bertrand's bone is so well healed, in fact, that he doesn't need another follow-up.

Relief. Relief. Relief.

Dr. Jones reiterated that Bertrand is cleared, from an orthopaedic standpoint, to go forward with steroid therapy for his seizures. Also, Bertrand was found to NOT have a leg discrepancy! Dr. J believes Bertrand's muscle--irregular tone--is to blame.

So, a pediatric chiropractor is looming in Bertrand's future! (Annie, you and Collin were right!)

A Brief Update

• Bertrand's pediatrician believes that there is a significant chance that his arm fracture may not be a result of his condition--just a normal toddler break. As such, steroids can be left on the table as a possible epilepsy treatment.
• Bertrand's keto team is uncomfortable upping his ratio from 3.5:1 to 4:1 due to his recent lab results. Glucose in particular was a concern. B's neurologist will get back to us on how to proceed re: diet, EEG and steroids.
• Bertrand's medical team will be having a pow wow in the near future with a focus on improving his physical and cognitive development and what trade offs need to be made (bone v. liver v. brain etc.). This would include his keto team, neurologist, pediatrician, geneticist, hepatologist, epileptologist and orthopaedist.
• Bertrand is getting to be more like his mother every day. At physical therapy today it was discovered that he has her same limb length discrepancy (left leg is longer). His stander has been adjusted to compensate and in the future he will need a lift in his right shoe.

Good Orthopaedic News

This morning Bertrand got some great orthopaedic news! His two hours of stander time every day has paid off big time. His hips, knees and feet now look great! Dr. Woiczik recommended as much time in the stander as he'll tolerate (over 2 hours would be even better). She wants to see Bertrand back in another 7 months to take more x-rays and see if orthodics may work better for him then, but for now she thinks he is building great strength and flexibility on his own!

And now, because I couldn't resist, here is another graph for Bertrand's one-month ketogenic diet check-up later this afternoon. :)

Knee News

Going in to my orthopaedic follow-up appointment, my knee felt great! I was hoping the knee pain was all in my head or at worst I'd be facing a torn meniscus. I was wrong. The MRI of my right knee showed cartilage damage and fissures. I am facing a knee replacement. At only 28 years old, I was shocked--but I could clearly see what the doctor saw on the MRI. At the rate that knee surgery is progressing, Dr. Aoki's advice is to avoid him for as long as possible. (Google says that replacing the cartilage with special polymers, rather than using cadaver cartilage, is coming online!)

According to Dr. Aoki, I have to "get as much mileage out of that knee as possible." I need to cut out high impact activities, but I have virtually none. I can go to physical therapy or just do patellofemoral exercises at home. I need to strengthen the muscles in my leg to help take some load off the cartilege via gliding eliptical machine or bicycle. For most people, losing weight would be an easy option, but I am already underweight. I can continue to take daily antiinflamatory medication like Aleve.

I am a bit depressed over the news. I'll start to do the exercises and look into buying a bike. I never thought about using the first floor bedroom for myself, but I guess that will have to become a possibility. What gets me most upset about this is, that about going to the doctor, Matt was right! ;)

Orthopaedic Braces

Today, Bertrand's physical therapist at Shriners, Cindy, suggested that we get Bertrand some leg braces. It is Cindy's hope that the braces will be able to restrict/calm the movement in Bertrand's feet thereby freeing up his concentration so he can focus on walking--rather than keeping his feet steady. (More than for physical benefit, I see this as Bertrand's attempt to stay abreast of his fashion maven friend, little Miss Hannah!)

In other news, we were late to Shriners for the first time today. The staff was shocked, but still in their staff meeting. (Basically we just didn't have to wait as long as we usually do.) Why were we late, you ask? As you can see from the picture below, we have our first real snow! The picture was taken this morning and it is coming down even harder now. It looks more like Christmas than Halloween! It is definitely time to look for a 4-wheel drive car.

Flu Shots, Knee Update and More

Flu Shot Odyssey
Before being admitted to the hospital in November to start the diet, Bertrand needs his flu shots: seasonal and H1N1. This morning we were able to procure the first of his H1N1 shots (kids under age ten need two doses, a month apart, for full immunity) from the Salt Lake City Department for Public Health. Unfortunately, they were out of seasonal flu vaccines. Even more unfortunately, so is every clinic and pharmacy in the valley (excusez-moi, "intermountain region")! BUT, hallelujah! we have a savior! (and no one who knows me should be surprised...) CostCo has come to the rescue! Tomorrow, October 22 from 10AM to 2PM is the very last day they will be offering the seasonal flu vaccine! (Apparently there are shortages of the seasonal vaccine because all production has been shifted to H1N1.) After Bertrand's physical therapy session, we will fly to the CostCo and hopefully get needlified before they too run out!

Get Well
Speaking of the flu, my dear friend Karen and her two adorable little boys are now sick! :( We're keeping them in our thoughts and hearts. This is the same wonderful, darling Karen who has been there for us every time life has gotten rough the past few months. (Just last week she was bringing over meals when my knee was out!) We hope they get well soon.

My Knee
Today I went to see orthopaedic surgeon, Dr. Steve Aoki. As I was being funneled through the admitting process at the University of Utah Orthopaedic Center (awesome facility, BTW), the receptionist, billing person, x-ray technician, and nurse, upon hearing that I was going to see Dr. Aoki all said, "Oh! He's the best one!" "He's the doctor I go to!" "He's the doctor I take my daughter to!" "I loooove Dr. Aoki!" So, I am pretty impressed before I even see the guy. Boy was I surprised when a human being, no god-like resemblance at all, walked into the exam room. ;) Anyway, Dr. Aoki seems nice. The x-rays, as expected, show no damage. Also as expected, he thinks I likely have a torn meniscus and ordered the MRI. My follow-up appointment to go over the MRI is next Wednesday.

Big Boy Room
Tonight is the big night! Bertrand is graduating from his crib in the nursery to the queen sized bed in his "Big Boy" bedroom! We finally got and assembled his extra-long, super-fancy, bed rails! Tomorrow morning I'll take pictures to share of my big boy in the bed! :)

Orthopaedic evaluation

Early this morning, Bertrand and I went to the Salt Lake City Shriners Hospital for Children. Bertrand had an orthopaedic evaluation with Dr. Marcy Woiczik. Dr. Woiczik said that his bones looked good so far, but she wants to see another x-ray of his hips in 6 months. She is concerned that B's delay in walking may start causing hip abnormalities.

Dr. Woiczik referred Bertrand to the physical, speech and occupational therapy department at Shriners. He'll be having his speech therapy evaluation this Wednesday with Laura. On May 5th he'll be having his occupational therapy evaluation with Chris and his physical therapy evaluation wtih Cindy. These evaluations will determine the frequency of therapy.

The physical and occupational therapists will address the issue of equiptment. Dr. W mentioned that Bertrand may need braces for his feet, but the draw back is that his muscles may not strengthen properly. She also mentioned a stander--it looks very similar to a gait trainer. The therapists will determine which kind of device would best benefit Bertrand.

Overall, Bertrand seems to be doing well musculoskeletally. We just need to keep him like that and give him a little extra help with coordination/balance. Speech-wise, we'll see what Laura says this week. B and I, we're excited to get to work!