Wednesday, November 2, 2011

Hanging with Baby J

I've been making an extra effort lately to spend as much one-on-one time with Baby J as possible. He had been showing signs of jealousy towards his brother and the extra attention he receives in the form of therapy sessions (fun grown-up playmates that come to the house) and doctor appointments (fun outings - at least in Baby J's eyes).

He goes to preschool three days a week but still really needs some quality time with mommy.

Here he is gazing at the glitter meditation jar we made together.



I discovered it on Pinterest and it was super easy to make. If you don't have a Pinterest, it's an awesome collection of, well, just about everything and a place to keep and organize all the great ideas you discover online and want to keep track of. Here's my link: http://pinterest.com/hsjohanson/. Let me know if you are interested and I can send you an invite. 


We also recently made an attempt at cake balls/cake pops a la Bakerella. They were a disaster but they sure did taste good!



On Halloween, the whole family set out to trick-or-treat but Bean wasn't exactly thrilled with the rain so he and his daddy headed home so Baby J and I could explore the neighborhood in the dark (a first for him!) and seek out those coveted Halloween treats.




Today, I get to spend a little extra, unexpected time with Baby J.

Today is a preschool day. Last night, I tossed around the idea of keeping him home today because he has a little cold - no fever, just not 100%. I decided to make a game time decision. When I got him up this morning, he lit up and asked if it was a school day and I didn't have the heart to keep him home. He LOVES school.

So, we rushed around and ran out the door.

When we got there, though, he was not interested in playing and wouldn't leave my side. He didn't want me to leave and couldn't really tell me what was wrong.

This isn't like him at all. Usually, I have a hard time getting a goodbye kiss because he is too interested in playing with his friends. His teachers agreed that this isn't the sweet, silly boy they are use to.

I gave him a choice: stay and play with friends or come home and play with mommy and Bean.

He couldn't decide but he wasn't about to let go of me.

I made the decision to bring him home. I expected a tantrum the second we left because he often has trouble making decisions. I was wrong. He put his coat on, grabbed my hand and walked to the car. As soon as I strapped him in, he said, "Mommy, I'm happy. Let's play at home. We can do school tomorrow."

I guess I made the right decision.

He's taking the day off and now has two days to get back to 100% before returning to school on Friday.

It's not one-on-one time, but we are getting lots of play in and he even "helped" me make crock-pot lasagna (new recipe. Will it be a hit or miss?). We don't even have any therapy today - just time to cuddle, play and hang out.

He's such a smart, sweet little boy. I'll take any time with him I can get. :)

Friday, October 14, 2011

Fall Photo Bomb

I love the fall. And my boys.

Seriously, fall is my favorite time of year. I love the colors, scents and tastes. But more than anything, I have been enjoying watching the boys experience the season.

They've been having fun exploring the changing leaves and yard.


And we took them to fall festival at Schramm's Farm last weekend. We have taken them to another farm in years past but ended up liking this one so much better because it was much more relaxed and low key.

Bean waited patiently while Baby J explored the hay maze. Despite the persistent scowl on his face, he really, really loved it and didn't want to come out.





Then, we waited in a short line for what turned out to be their favorite part of the day - horse rides!






And what trip to the fall festival would be complete without playing in the pumpkin patch?








We had a lot of fun and the boys were sad to leave but I think our family has found our new favorite fall festival. A trip to this farm is now a family tradition for us.

I love this time of year and the boys seem to love it, too. I'm looking forward to enjoying the rest of fall with them and watching them explore all that this awesome season has to offer.

What is your favorite season and what are some of your family traditions that go along with it?

Thursday, October 6, 2011

Could it be so simple?


Yesterday was Bean's follow up at the CP clinic at Children's. No, he doesn't have CP but the clinic sees children with various conditions, syndromes and developmental delays.

The appointment went really well. He saw a physiatrist, CNP, occupational therapist, physical therapist and speech therapist. Everyone was really pleased with his progress since his appointment 6 months ago. We are not going to do braces/afo's (yet?) and we will go back for another follow up in 3-4 months.

After the appointment, we stopped in at the lab to have his blood work done for his GI since we were already there. They were doing a full blood panel as well as testing for Celiac disease. I also requested that they test his serum ferritin because a deficiency can cause periodic limp movement disorder.

If you have read this blog for any period of time, you know that Bean is a horrible sleeper. He thrashes all night long and wakes up screaming every one-two hours - some times more frequently. My mother first saw mention of PLMD and iron deficiencies in a child with Williams syndrome so she suggested that I look in to it. When I read about PLMD, it fit him to a tee, so I wanted to test for it.

Well, I have amazing news.

Bean is anemic. I know, I know. It's not a good thing. But it is a good thing; amazing even.

It's really no surprise. He eats like a bird and can't take a regular multi-vitamin because of calcium issues.

I'm not sure how they have missed it this long but it could be the answer we have been looking for. And it's easily fixed. This could explain all of the sleep problems that we have been dealing with for TWO FLIPPING YEARS! Well, not all - we still have the behavioral component to deal with but that comes after we fix the medical problem.

I've been insisting for two years that there's something more going on than a behavioral problem. Something not normal, not right. And of course there's a behavioral problem. I comfort him to sleep and every time he wakes and he's still in my bed. We HAVE to deal with that.

But I was right, darn it. There is an underlying medical reason that Bean can't stay asleep and no amount of melatonin or anything else seems to help. He's deficient in a very important mineral that is causing cramping in his limbs over night.

So here's the plan. We are starting an iron supplement today. We are continuing with melatonin. We will have his iron levels retested in six weeks (or sooner if I have my way). We are going to see a sleep specialist in two weeks to try to fit all the puzzle pieces together and come up with a sleep plan for Bean that takes all factors in consideration. BTW - one of the docs at our regular pediatrician office, Kids Plus Pediatrics, is the aforementioned sleep specialist. Have I mentioned that they are awesome? Really a one-stop shop. They can handle so many things! In the meantime, I'm hoping that Bean will sleep a little more restfully as we begin to restore his iron supply and we all begin to get some much deserved, much needed sleep. Then, we'll start to deal with the behavioral issues...


When I got the news this morning, I was so happy that I cried. Yes, happy tears. Again, not happy that Bean is anemic but overjoyed that we might finally have our answer.

Could it really be so simple? Oh, I hope so!

Sunday, October 2, 2011

"I need a case manager."

So many times, I've heard parents of kids with special and complex medical needs say that they need a case manager. I can certainly relate. The good news is that there's resources out there for parents like us.

It became apparent early on with Bean that we would be juggling a number of specialists and therapists. It was cumbersome keeping track of doctors and the frequency of tests and appointments.

Shortly after receiving his Williams syndrome (WS) diagnosis, his pediatrician referred us to the Diagnostic Referral Group at the Children's Hospital of Pittsburgh. We were overwhelmed with a list of doctors we needed to see and tests that needed to be done (and then repeated at certain intervals) and the DRG has been a life saver.

The doctors in this clinic have two purposes:

1. general healthcare management for children admitted to the hospital

and

2. managing the care of children with complex medical needs.

Fortunately, Bean has never been admitted to the hospital over night but he does certainly fit the second category and it will be helpful if he is ever admitted that we are established with this group.

Bean still goes to his pediatrician for general well baby care, immunizations and simple sick visits but his doctor in the DRG oversees his care with other specialists. She helps me keep track of when he needs to be seen and who he needs to see. She oversees all of his test results and makes referrals to new specialists if/when needed. She also helps me to get appointments when it is hard to get in with a specialist. She is amazing and for all intents and purposes, she is Bean's medical case manager.

Wouldn't it be great if doctors like this were available to all families of kids with special and complex medical needs? The good news is that many children's hospitals have similar services. I did a quick search and found a couple:

The Diagnostic Center at Children's Hospital of Philadelphia
The Diagnostic Center at Children's Hospital of St. Louis

and I'm sure there's many more out there.

To look for services on your hospital Web site, look for words like "diagnostic," "referral service," and "complex care" or call your hospital's general information number and ask. If your hospital doesn't have a similar service, you can ask your geneticist or lead physician to act in a similar capacity.

Another resource is that every hospital has a Social Work department and they can help you navigate the hospital system.

And one other thought that will make your trek though many doctors more organized and productive is to keep a notebook/binder with all important documents/notes/tests/dates/etc. and I also carry a single bulleted list of all diagnoses, tests, results, doctors, therapists and phone numbers. The docs love this and it makes appointments so much more focused and productive.

For specific genetic conditions like WS and other developmental diagnoses, clinics exist where you can go and see all the essential specialists and therapists in a one or two day trip. There are WS clinics in Boston, Cincinnati, Columbus, Philadelphia, San Diego, Bronx, Buffalo, and Salt Lake City. We are considering getting Bean established at one of these clinics soon so that we can consult with people that specialize in WS. Contact information for  each clinic can be found at the Williams Syndrome Association Web site.

In the meantime, I have been very pleased with the standard of care that Bean has received at Kids Plus Pediatrics and his various specialists at Children's. It has all been made easier since we have received the coordinating services of the Diagnostic Referral Group. I certainly recommend looking in to similar services in your area. Having a case manager makes it all more, well, manageable.

Saturday, October 1, 2011

Deleted

Oops! I was fooling around with Blogger's mobile app and I accidentally deleted my last post. It was about being back. And the reason that I haven't been writing - Bean's sleep has been atrocious (and it still is) - and I have been more sleep deprived than ever imagined possible. He's waking every 30-60 minutes. No exaggeration. We're looking in to the causes but we are thinking that his reflux is flaring and that he might have something called periodic limb movement disorder due to an iron deficiency.

Either way, writing has been good for me so I'm making a renewed effort to get back in to the swing of things. Regardless of how tired I am.

Right now, I'm working on a post about some really important resources to help families with complex medical kiddos keep organized and on top of the many specialists. Expect that post later today or tomorrow.

Oh, and I also just installed a new comment system to try. Check it out and leave a comment to let me know what you think. And if you have a blog, you can click the little CommentLuv box and it will link back to your most recent post. Pretty nifty!

Monday, September 12, 2011

Surgery Update

I apologize. This update is long overdue.

Bean's dental surgery was last Wednesday. We headed to the hospital bright and early. After checking in, we were sent to the surgical play area where Bean had a blast (in his exceedingly large hospital gown) in between consultations with the nurse, his surgeon and the anesthesiologist.




When it was time to settle down and prepare for surgery, Bean became very agitated. We decided with his anesthesiologist to give him a dose of Versed (it's like a kiddie version of Valium) to help him relax. They needed to get a 4-limb blood pressure check so the med helped immensely. After about 10 minutes, he was as snuggly and docile as ever. 


It made talking to the doctors a lot easier because he wasn't crying so hard and his vitals settled down.

Going in to the surgery, I felt great about his surgeon and even better about his anesthesiologist and his resident. They all had a decent amount of experience with and knowledge of Williams syndrome. The anesthesiologist was very thorough in his preop evaluation and he all but wiped away my concerns.

I carried Bean back to the OR and was there with him through induction. He did great. He was nice and calm and drifted off to sleep gracefully. Once he was asleep, the nurse directed me to the waiting room.

My husband, mother and I ate some breakfast (food is a great comfort item/distraction, right?) and just chatted for a bit. 

Less than an hour later, the surgeon came to let us know that Bean did great and was in recovery. They did have to remove all four teeth because they were concerned about the risk of infection causing cardiovascular problems. 

The nurses kept peeking in to the waiting room while the doctor was with us so I knew that Bean was awake - and I guessed that he was pretty agitated given his previous history with anesthesia.

I was right.

The nurses escorted Husband and I to recovery and there was Bean, a tiny beast. My poor baby hadn't even opened his eyes yet but he was swollen and crying with a puffy, red mouth. They gave him Precedex (a sedative) to help him calm down and Fentanyl and Tylenol for pain. but nothing worked. He was most upset about everything attached to him and was thrashing around. His blood pressure and pulse rates were through the roof but his oxygen sats were stable.

This lasted for about an hour until they unhooked everything. He wanted everything off so bad that he managed to pull his IV out when they were getting ready to remove it. He was still upset but a bit calmer than he was.

We moved to Recovery level three where my mother was able to join us and just had to wait for Bean to drink something and keep it down so we could leave. But Bean being Bean, he refused everything they offered. He wouldn't even nurse. He fussed off and on and only wanted his mama. Eventually, after an upset stomach, he slept for about two hours. We were beginning to get concerned that they were going to admit him if he didn't drink. Fortunately, after he woke up, he was feeling a bit better and nursed.

So, four hours after his surgery ended, we headed home.

The next couple of days were rough. Bean was very irritable, refused to eat anything other than breast milk and ran a persistent low-grade fever. We stayed in touch with his doctor but thankfully, his fever never got high enough that we had to go back in.

Aside from having a little cold, Bean is doing much better this week. He's still pretty clingy but he is eating, drinking and playing. He had his two-year well check today and did great. His ped took a look at his gums and said he is healing nicely.

Thanks so much for all your support. It means the world to my family.


Tuesday, September 6, 2011

Tomorrow is the day...


Bean's dental surgery is tomorrow morning.

I wrote about it before here and here.

We have to be at the hospital at 7:45. I'm glad it's relatively early so that he won't be too hungry and grouchy.

I'm worried, though. Well, I'm not so much worried about the actual procedure - though I am a bit bummed that he will be losing at least two (probably four) teeth. What I am concerned about is the anesthesia.

Anesthesia for anyone, especially a child, carries risks. It carries even more risks for someone with Williams syndrome because of the characteristic heart problem: supravalvular aortic stenosis (SVAS).

Bean's SVAS is mild at this point and he has done well with anesthesia in the past (pre- diagnosis), but his condition is progressive in nature and I am his mommy so I worry.

My husband and mother are both joining me at the hospital (I couldn't pay my mother to stay away) and my husband's parents will be spending the day with Baby J and taking him to preschool. I am so excited that they will get to see him in that environment and Baby J can't wait to show them his school!


I will post any (brief) updates on my twitter (@babyjandbean - you can link to it here and no, you don't need a twitter account) and my facebook blog page: www.facebook.com/babyjandbean because the two update each other automagically and I can easily post from my phone.

Thank you for keeping Bean and my family in your thoughts.

Good night - here's to me hopefully getting at least a little bit of sleep...

Monday, September 5, 2011

Freezing Time


Baby J started (back to) preschool on Friday. 

He had a hard time falling asleep the night before so we had to wake him up in the morning. As soon as he saw me, his face lit up because he was so excited.

It was one of the smoothest mornings we have had with him in a long time. He got up easily, ate his breakfast (french toast) without a word of dissent (highly unusual), and quickly dressed and put on his Thomas the Train backback. And yes, he insisted on wearing his Toy Story/light up, character shoes.


We even left the house on time.

Baby J was so excited when we got to the school. He started playing right away in the sandbox and then with some trucks.



He was so happy about playing with old friends (and some new ones) that he barely noticed when it was time for me to leave. I got a quick kiss and a "whatever mom" look and he was off...

When I went to pick him up, he was sitting nicely (quietly!) in circle time and greeted me with a ginormous smile and hug.

I'm so proud of him and I'm so happy that we found his school/program last year. He's come so far since last year in group play dynamics, transitions and quiet times. The teachers are fantastic and he even has one of the same ones (his favorite teacher!) that he did in the toddler class. He also has quite a few friends in class this year that were in his toddler class last year. The only big difference is that he's going three days a week instead of one and the class time is slightly longer. 

He heads back this Wednesday and he can't stop talking about it!

My little boy isn't so little now. He's growing up so fast, I can hardly stand it. He's so sweet and amazing and smart and funny (and "spirited" sometimes, too). Can I just freeze time now and keep him like this forever?!?!



Thursday, September 1, 2011

I'll never...

How many times have I said that? Too many to count.

Just about two months ago, I wrote a similar post about eating my words when we bought our mini van.

So anyway...

Baby J needed back-to-school shoes. I like shoes. A lot. But I really don't like character shoes for kids or shoes that light up. So, I ordered a really cute pair of Simple shoes from Amazon. They were on sale. I got free shipping and they are really stinking cute. They are sneakers but can double as dress-up. They have a funkified saddle-shoe vibe. You can see them here.

The dude, however, was NOT as excited about them as I was. He has been living in Crocs this summer and prefers to wear them year round but I digress...

Because these shoes were a wee bit on the pricey side for kid shoes ($30) and because I want him to be able to wear them for dress, I decided to take him to get a pair of cheapy sneakers for rainy, yucky days on the playground. So, off to Target we went...

And what did we come home with?



Yep. You guessed it. Character shoes that light up.

And they are worth every penny. He is IN LOVE with these shoes. He's been putting them on the minute he wakes up, stomps around the house all day long to make them light up, and isn't taking them off until bed time. He even asked me if he could sleep in them. In case you are interested, the answer was, "no."

I have a feeling I know what Baby J will be wearing on his feet tomorrow morning for his first day of school and it won't be the super cute, slightly pricey Simple shoes that Mommy loves.

You would think I would have learned by now to stop saying, "I'll never..."


Wednesday, August 31, 2011

Who's a Big Boy?

Time flies.

Bean turned two on Monday. And we had a small family gathering on Sunday to celebrate. He's obsessed with Yo Gabba Gabba right now so he was especially excited to see all of the decorations and the cake.


I was super excited this year because he is now able to eat "real" birthday cake - no gluten free/dairy free/soy free/egg free substitute. He enjoyed looking at it but wasn't interested in tasting it. At all.

That's ok though because he really enjoyed interacting with his family and friends. And he was much more excited about gifts this year. He had his brother help him open packages and got really excited to see what was hidden inside.

His "big" gift from my Husband and me was a mini trampoline. He loves bouncing. It's calming for him. And I have noticed several Williams syndrome moms suggesting trampolines. His occupational therapist thought it was a great idea and would give him some great input and it might even help settle him down in the evenings to help with sleep.




It took him a bit to figure it out. At first, he just sat on his bottom and bounced that way. But after watching his brother take a short turn, he knew just what to do. 


The trampoline is a huge hit with both kids and they are spending a lot of time on it every day.

I am spending my time wondering where the past two years went. 

Bean's first two years were anything but easy. Between getting the Williams syndrome diagnosis, endless doctor and therapy appointments, the delays, sleepless nights, food issues, reflux, endless crying, and constant need for mommy comfort, the first two years seemed to drag on. And on. And on. I'm a bit embarrassed to admit that there were days that I wished time would speed up and things would get easier.

Looking back, though, it really did fly by. If I had a time machine, I would go back and really appreciate every moment - even the tough ones. 

I am so proud of all that Bean has accomplished. He's a toddler now. He walks, plays, (tries to) run and jump. His personality is exploding and he is just so much fun. My sweet baby is a big boy now.

Here's to taking this next year slowly and really enjoying everything...


Friday, August 26, 2011

But they're so darn cute...

The dudes were getting pretty shaggy so they got haircuts earlier this week when my mother was here.

In case you didn't know, my mother is a hairdresser.


Both of them really dislike getting their hair cut. They especially hate the clippers. Because they go bonkers it's stressful for everyone involved, we don't do it often.  


I know, I know. We should do it more frequently so they get desensitized.


This time we tried distracting them with the DVD player, music, toys, treats, holding them, and covering their ears. Nothing worked.

They were both pretty distraught but they recovered quickly and looked so darn cute when my mother was done.

I really hope they grow out of this soon. What do you do to help your kids (and yourself) through haircuts or other stressful, but necessary, times?




Wednesday, August 24, 2011

What a difference...


Wow. What a difference a week can make...

If you recall the drama from last week (if not, you can read about it here), you'll be pleased to know that Bean's therapy situation is finally straightened out and I am very happy with the current situation.

After the initial confusion last Tuesday, I got another call from Bean's old physical therapist (PT) on Wednesday. I did not answer the phone under the advisement of his service coordinator (SC). From her message, it was clear that she had still not been notified so I called the SC again. And then I called her again on Thursday. And then I called her again on Friday and then AGAIN on Monday. On Monday, the SC was able to tell me that the PT had never been notified by her supervisor (which is protocol) so the SC contacted her personally. Per my request, she made it very clear that I really liked and appreciated the PT but that we needed to give Bean a little jump start and try some different strategies.

So, the new PT was here yesterday. And I LOVE HER! She is exactly what I was hoping for. Very different than his old PT. Very proactive and very knowledgeable. Since she has never treated a child with Williams syndrome (WS), she took the time to learn about Bean's diagnosis before she got here. She also talked with Bean's other therapists that are employed by the same agency to get an understanding of his personal situation.

She understood, without pressure from me, that she should not be discharged from PT simply because he is walking. There's many more things to work on. And she got that he is a long-term candidate for PT given the unique challenges associated with WS. Specifically, children with WS often have hypotonia (low tone) but go on to have spasticity (tightness) issues because they lack the elastin gene. She also had an awareness for Bean's sensory issues and ideas on how to address these needs that were very complementary to the work we are doing in OT. She clearly has cross-disciplinary training.

The new PT connected well with both boys and she asked a ton of really relevant and important questions. Before leaving, she gave me several new things to try. I felt like we accomplished more in that first, introductory hour than we did in the last 6 months with his old PT.

I still feel bad that Bean's old PT's feelings were hurt but I am so happy that I decided to make the change. The difference between the two therapists is like night and day and I am so excited about this new direction.

We also started Speech Therapy (ST) this week and I love, love, love his ST, too. She comes from the same agency as his OT and new PT - I think they are the best! She worked with two other children with WS in the past and she made an immediate connection with Bean. Baby J thought she was pretty great, too.

She wasn't able to do a whole lot in the introductory meeting because she was still waiting on the Rx from his ped but she did give us a couple of suggestions that, looking back, seem obvious but I had never considered.

  1. When naming objects in conversation for Bean, we should hold the objects beside our face so that he can look at the object AND watch our mouths. And I swear, it's working. Earlier today, I got him to say "Elmo" (sounded like el-lo) five or six times!
  2. When practicing "mommy," which he is not yet saying, hold the back of his hand to my mouth and say it slowly so that he can feel the vibration and then hold his hand to his mouth while I say it again. This is really working. He loves the vibration and is getting very close to an "M" sound. And it's only been two days!

In case you can't tell, I am incredibly excited about the way things are going. We have two new, fantastic therapists and they are already making a difference for Bean and our family.

Thursday, August 18, 2011

Mmmm...Pizza!

So, we had pizza for dinner tonight. Real pizza. Not gluten free/dairy free pizza. Real, greasy, gooey pizza. And it was awesome. Bean even had a little taste!

Since my last post on Bean's dietary restriction, we have trialed the final three food proteins that had been eliminated: dairy, soy and gluten. I am not ready to say with 100% certainty that Bean has passed all three - I think that soy is fine but he has shown some minor signs that dairy and/or gluten may be an issue - but he has handled all of them relatively well. None of his symptoms are bad enough that I am ready to start eliminating again but I am well aware that it can take months to really see if there's a problem.

If I do need to eliminate again, I'll start with dairy because that is what he has had the strongest reaction to in the past. And I really want to finish the 2.5 month gluten trial so that we can ensure that his body has had an adequate challenge to do the Celiac's test. It is my understanding that people with Williams syndrome have a much higher probability of having a gluten intolerance than the general population and given Bean's past issues with food, I want to rule Celiac disease out as early as possible.

I don't personally have any food intolerances (that I am aware of) but I was also on the elimination diet (for nearly two years) so that I could continue to breastfeed. -- We're still going strong! Except he is officially, finally night weaned. He's still not sleeping through the night but at least I'm not feeding him every couple of hours. Hooray! -- It's very important to me, personally, to nurse my kids and it saved us a heck of a lot of money on super expensive, $40+/every two days formula and it eliminated the possibility of Bean needing a feeding tube.

All that said, I am really enjoying having more food options. At this point, I can pretty much eat whatever I want. And I really wanted pizza tonight. So, we ordered the rare treat!

I need to be careful for another reason, though. I lost so much weight on the elimination diet and I can feel myself gaining daily. I'm not too concerned yet because I had actually lost a little too much weight but if I'm not careful, I'm sure that I will gain a little too much now. One of the most important things that I did on the elimination diet was avoiding processed foods and making everything from scratch so that I knew what was going in to our foods. I'm going to try to stick to that as much as possible (with treats thrown in every now and then like tonight) because it's just so much better for us. Still, it's nice to have more options and to be able to go to a restaurant and not worry about so many restrictions and cross-contamination.

If, however, Bean does end up having trouble with dairy and/or gluten, I'm prepared to eliminate those foods again for both of us. And if we do have to go that route, I'll remember that I got to have a yummy, ooey, gooey white pizza with tomato. And so did he. Mmmmm.

Tuesday, August 16, 2011

Are you kidding me?

Really? Really?!?! Ugh! I mean, come on!

Last week, I mentioned that I finally worked up the nerve to request a new PT for Bean. When the service coordinator came to do Bean's evaluation, she told me that she already talked to his old PT's supervisor and acquired the new PT. I confirmed that the old PT would NOT be coming again so as to avoid an awkward situation, that everything was taken care of and I didn't have to lift a finger.

Fast forward to today.

Tuesday is our usual PT day. She use to come in the morning. Because I am a wimp had a strange feeling, I insisted that we had to be out of the house just in case there was a mix up and the old PT showed up.

So, my mother and I piled in the car with the boys and planned to run to Trader Joe's, Whole Foods, pick up Baby J's physical form at his pediatrician's office and drop it off at his preschool.

Shortly after we got in the car, we decided to drop something off at my husband's office. Not a big deal. It's in town and I've driven there 8,365 times. Except that I forgot about construction and ramp closures. So, I took a wrong turn. Three times. In a city that I have lived and commuted in for 16 years. A drive that should have taken 10 minutes took 45 minutes.

Here's what happened.

Right after taking the first wrong turn and trying to decide which way to go next, my phone rang. It was Bean's old PT. Because I am a wimp was driving, I didn't answer. Instead, I waited for the message. She was at the house and wondered where I was, did I forget about our appointment, and would I please call her as soon as I got her message.

Apparently she didn't get the memo that we had requested a new PT. Here, I had been stressing all weekend that I had hurt her feelings and she didn't even know!

But because I am a wimp was driving, I didn't return her call. Instead, I called the service coordinator to find out what the heck was going on. Um, yeah, that driving thing isn't such a good excuse after all. I was hands-free, I promise!

She didn't answer. I had to leave a message and because I was freaking out confused, I missed two more turns, while talking, and sounded like a blubbering idiot. Oh, and yeah, Baby J was screaming at me to stop at every stop sign/light because he recently discovered traffic signs and their meaning.

We managed to get everything done, even though it took forever. But the service coordinator hadn't returned my call by the time we got home (1.5 hours after I left a message). So, because I was still freaking out am thorough, I called again. VM again.

I have never missed an appointment. If something comes up, I ALWAYS cancel/reschedule with as much notice as possible. The fact that the old PT thinks I just didn't show up really bothered me and because, well, I'm too wimpy to call her myself, I really wanted to talk to the coordinator and get to the bottom of the situation. This time, I sounded more put together on my message.

I took the kids upstairs for their nap and Baby J, of course, refused to sleep despite being tired and whiny. Bean did sleep. But not for long because his brother woke him up. So we went back downstairs to play.

As of now, I haven't received a response from the service coordinator. I am starting to wonder if I am crazy and I only imagined that I had the conversation with her. I am seriously sleep-deprived, after all. But no. My husband was here at the time and overheard me and I have a note here with the new PT's name and number.

And speaking of the new PT, she's supposed to be here, oh, right now. And she's not. Maybe she's just running a little late but given the kind of day I had, I'm betting on a "no show."

*********************

Update: I finally heard back from the service coordinator. She was in meetings and training all day. Anyway, she felt horrible about the mix up. Apparently, she had done her part and the old PT's supervisor hadn't notified her yet. The service coordinator is going to fix the problem and after the PT hears from her supervisor, the service coordinator is going to talk with the old PT and let her know how bad I felt and how much I really liked her personally but I just really felt the need to go a different direction.

As for the new PT, I guess something went wrong with the referral process and she just got the referral today. So, I should be hearing from her tonight or tomorrow to schedule. I scheduled today's appointment tentatively on Friday with the service coordinator. So, we'll see what happens.

Monday, August 15, 2011

Doctors treating special needs parents with respect


Last week, Bean went for his anesthesiology consult prior to dental surgery scheduled in early September - but we're on the cancellation list and hoping for an opening sooner because his teeth are getting worse and worse.

This appointment was important because individuals with Williams syndrome (WS) are considered at high risk for anesthesiology complications due most often to heart problems and it is critical to develop a plan with the anesthesiologist. I wrote about common heart problems associated with WS here. Bean has the characteristic supravalvular aortic stenosis (SVAS) and hypertension though both are considered mild at this point, thank goodness.

So, off to the hospital we went.

Baby J stayed home with his father and Bean and I got to check out the same-day surgery unit.

I knew going in that we would not necessarily be meeting the doctor that will be administering his anesthesia and monitoring him on the day of the surgery because that is not decided until the day of, but the doctor we would see that day would write a plan with me and attach it to his file for surgery. I was not expecting, however, to only have the opportunity to meet with a resident rather than an attending as I had been hoping.

After a short wait, the resident met with us. He was very friendly and easily connected with Bean and he assured me that he would discuss Bean's case with his attending before finalizing a plan with me. That was ok with me. I'm ok with a teaching hospital, I really am. But still, I want the best, most educated and experienced for my child.

He was not familiar with WS but was willing to learn. He sought to reassure me that Bean would be just fine and he was not at all concerned with complications because his heart problems are considered mild at this point. This is where I had the problem.

Don't get me wrong. I am grateful that Bean's issues are considered mild but the doctors need to take his case seriously. SVAS is a progressive condition and it is possible that it has changed - even slightly - since his last echo. And anesthesia is always risky - especially for a child with a complex medical history.

I understand that the resident was likely just trying to comfort me but I am not the type of parent that is comforted by having my concerns minimized. I mean really, does that type of parent actually exist? Instead, I want the doctor to acknowledge the risks - specifically cardiac arrest and malignant hyperthermia among others - tell me what s/he will do to prevent these risks and what the plan of action will be should something go wrong. 

Treating me with respect and acknowledging that I have at least some knowledge about my child's circumstances is THE way to gain my trust. And Knowing that my child is in capable hands that knows what s/he is dealing with and knows how to handle the worst case scenerio is what comforts me.

Because this is a teaching hospital and because the resident is there to learn, I let him know what I was thinking - in a kind, respectful tone, of course. He was receptive and then the real conversation begun. We discussed the risks. I shared research with him that he was not aware of. He explained process and precautions to me. And he did get the stamp of approval from his attending. Bean will be treated as high risk. He will have the full attention of an attending that has an understanding of his unique health circumstances. He will get the best care possible.

Ultimately, I left feeling a lot better than I did at the start of the appointment because the resident (eventually) treated me with respect (after a receiving a gentle nudge from me.)

Friday, August 12, 2011

It's all about him...


It's been a busy week filled with therapy and two appointments at Children's (more on that in another post) and today, we had Bean's quarterly evaluation for Early Intervention (EI).

In these appointments, we review his goals and progress towards goals with one or more of his therapists and his service coordinator. I was pleased to see all the progress that Bean has made in the last three months - he is walking, dancing, more interactive and beginning to imitate more sounds, gestures and even some words.

These appointments are also the best time to make changes to his Individualized Family Services Plan (IFSP) - including goals, therapists, frequencies, etc... We adjusted his OT schedule a bit and added Speech. Most importantly, though, I finally worked up the nerve to request a new PT.

This was a really big deal for me. I have been wanting a change for a long time, but I have just felt bad about requesting the change. His current (well, previous now) therapist has been with us since Bean enrolled in EI at 8 months old. We have established a personal relationship and both Bean and Baby J were comfortable with her. Still, it never really felt like a good fit to me.

My approach to Bean's therapy is very proactive and I want to get him all the help I possibly can before he progresses to the DART system at 3-years old. His PT was very reactive in her approach and in my opinion, was focusing on the present and not really working towards future goals. I like her personally but I was very turned off, as soon as Bean started walking, when she suggested reducing his services. This was actually the 2nd time that she had suggested reducing his services. Bean is almost two and is still significantly delayed in gross motor skills. His doctors and other therapists strongly agreed with me that he needs as much (proactive) therapy as possible. When I told her that I wasn't interested in reducing PT, she accepted that but it was always the giant elephant in the room...

Still, I held off on requesting a new therapist because I just felt bad. I like her. I don't want to hurt her feelings (and yes it will hurt her feelings. She once told me that another family requested a new therapist and it made her feel really bad. I know, totally inappropriate conversation).

But in planning for this meeting, I knew that I had to make the change. Bean is about to turn two and only has one year left in EI. It will become a lot harder for him to qualify for services when he turns three so we need to get as much therapy in as possible.

I thought about it long and hard and realized that I am not firing her. She is not losing any income or reputation. It just isn't a good fit for our family. We need to do what is best for Bean.

So, I did it. II stood up for Bean and got him what he deserves. His service coordinator took care of the calls to avoid any uncomfortable conversations and he has a new therapist starting on Tuesday. She comes very highly recommended from his other therapists (that are already both GREAT fits for our family) as a proactive, energetic, adaptive and positive PT. I can't wait.

I do feel bad. And I know she feels bad. But it's really not about her or me. It's all about Bean and what is best for him.

Monday, August 8, 2011

There's No Place Like Home

We got back from our family vacation last Tuesday and, if you can believe it, this is the first time I've turned my computer on since BEFORE we left! We've been busy with doctor appointments and therapy sessions and are just finally getting settled in.

The Husband and I enjoyed our vacation. I enjoyed being able to actually eat in restaurants now that we've added more foods back in to my diet - more on that in a future post. 

Baby J was beyond thrilled with the beach and having lots of cousins to follow pal around with. 



Bean, on the other hand, had a really hard time being away from home. I expected him to have sensory issues with the beach because he has an intense dislike for sand, sun and wind (yikes!) but I thought he'd love being around the family and hanging out in the condo. Instead, he got extremely clingy the minute we got there and wouldn't go to anybody but me the entire week - not my husband, not my mother, only me. So needless to say, I was exhausted. 

He disliked being on the beach as much as I expected.



He was at his best when he was inside with just me, in the quiet.


He liked talking to himself in the mirror as long as I was close by.


In contrast, his brother was impatient to get to the beach each morning.


Oddly (but mercifully), both kids did well at outdoor restaurants with the help of the DVD player.



We went to my mother's house for a couple of days for the fair parade. I thought that Bean would settle down there since he has been there many times and usually loves it. I thought wrong. It was so bad that I was getting ready to call the doctor because I thought he must be sick. Again, I thought wrong.

The minute we came though our door last Tuesday, Bean went straight to his toy box and was back to the sweet, little boy we know and love.