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.