Thursday, June 30, 2011

Say What?!?! - 06/30/2011


It's been a while since I've done one of these, so here it goes... Another rendition of Baby J silliness...

Me: Honey, please keep your snack in here.
Baby J: No, I want to eat it in the room.
Me: This is a room, too. You need to stay in here.
Baby J: This is not a room. It's the kitchen.

Well, alright then...

Me: Baby J, play time is over. It's time to go upstairs for nap.
Baby J: Hold on. I'm almost done with my work.

He finished his "work" and went to bed without a fight!

Baby J: Ice cream balls come from the ice cream truck.

...as he housed his dippin' dots purchased at the grocery store and retrieved from the freezer for his dessert consumption. But I suppose you can get ice cream balls from the ice cream truck.




Wednesday, June 29, 2011

ENT, Audiology and the Sniffles


Bean has recently discovered that he likes sitting in waiting room chairs when we go to doctor appointments. Here he is at one of his many appointments over the last week. He cries and whines and screams to be let out of his stroller so he can climb (with some help) on to a chair. Then he sits there and hams it up like the big boy he is.

Too bad that good mood doesn't last for the duration of his appointments.

We concluded phase 1 of our summer hospital tour this week with a visit to the ENT and Audologist on Monday. I almost rescheduled the appointment because he picked up a cold at one of his appointments last week (I'm pretty sure it was the developmental ped appointment because they had him playing with a bunch of their toys and of course EVERYTHING - except food - goes in his mouth). I was worried that the hearing test would be invalid because of the congestion but decided to keep the appointment because it was a hard one to get and I didn't want to wait for another opening.

The morning started out fine. Baby J stayed home with Husband (he took the day off for his birthday and some family fun!). Bean was excited to be at the hospital (yes, excited) and play with the toys and various activities. He did ok through the vitals again - we got a second confirming weight of 22 lbs!!! Then, we went to the exam room. He didn't want to sit in the stroller or on my lap. He wanted to explore the room. Which was fine until the doctor came in. At that time, Bean went nuts. He really doesn't enjoy being poked and prodded so they got the exam over quickly. In short, his ears, nose and throat look good. His tonsils were slightly enlarged which might be explained by his cold - or that just may be the way they are and possibly cause his snoring - but not enough to concern the doctor. We are going to keep an eye on the snoring and go back for another sleep study  if it gets worse.

I used the compression vest to help him settle down and it worked great, for the most part, for his hearing test. They were able to do a double ear test but he would not tolerate them putting something in his ears for the single ear test. Thankfully, they were able to get enough information to ascertain that his hearing is in the normal range. I was told they are not able to test for hypersensitive hearing (hyperacusis) at his age. So, we follow up in a year for another test because hearing problems can come up for people with Williams syndrome.

So, all good news and no more appointments until mid-July when we go back to GI (unless they can get us in sooner) and his diagnostic referral physician. And that's a good thing because he shared his cold with his brother and daddy. Fortunately, I'm still healthy.

Baby J was pretty miserable yesterday. I knew he wasn't feeling well because he actually layed on the couch and watched TV for over an hour AND took a nap without a battle. That never happens!



Forgive the super grainy phone pics but that's what I had with me yesterday.

There's still some coughs, sniffles and sneezes but fortunately, everyone seems to me much better today.



Tuesday, June 28, 2011

Link up!

I've always been interested in linking up to blog hops and connecting to other bloggers but I always thought that none really addressed special needs bloggers. Well, that was the case up until a couple of days ago...

This weekend, Kat's Cafe created an opportunity for special needs bloggers to connect and share experiences with a blog hop dedicated to special needs. Link up and join us!

Are we going to the hospital?


Every time we get in the car, Baby J asks (excitedly!) if we are going to the hospital. This happened yesterday when he and I were on our way to shop for Husband's birthday. Baby J was disappointed when I told him we were going to the mall. When we got there, though, he got excited again and told me we were at the hospital (pronounced as hops-ti-tal in his world.) he thinks all large, square-ish structures are hospitals or doctors' offices.

This is just one example of the ways  that Baby J, a "typically" developing child, is affected by having a sibling with special needs.

We spend so much time in therapy and at Dr. appointments at Children's for Bean that it has become Baby J's world. He's 3-years old but can name his brother's doctors and tell you who his favorites are. He gets excited to see Bean's therapists and cries when they leave.

Baby J is still so young. I worry that a (hopefully brief) time will come that he will resent his brother for all the attention he receives.

Husband and I try hard to do things with Baby J to broaden his world. He did a preschool preparedness class last year. We go to the playground frequently. We're going to the beach next month. We try to get him around peers as much as possible. We make it a point to take him out for one-on-one time and plan special activities at home for him. Still, there's a twinge of guilt when I realize how much his life is affected by his brother's needs. And then I feel guilty for feeling guilty...

I don't know what the answer is, if there even is an answer. I guess it, like everything else, is about finding balance.  For now, I am just grateful that he is finding fun in all of the activities that we do with Bean and that he actually gets excited about going to the hospital - since we spend so much time there. 

At least after yesterday, I'm pretty sure that he knows what the mall is now and he knows he likes it. I'm in trouble!

Friday, June 24, 2011

Something's Up

Well, kind of. It seems to be getting better, but anyway...

For the last two weeks, Bean couldn't get enough outside play. He mastered walking up and down the sidewalk and did it over. And over. And over. His walking has really taken off outside because he doesn't like his hands to touch the concrete or grass in our yard or the mulch at the playground. He has enjoyed being outside so much that he was actually throwing tantrums when we came inside. This is a new thing for him but we were actually excited to see because it's totally developmentally appropriate!


That came to a screeching halt this past Wednesday. Since then, when we go outside, he plops to the ground and refuses to walk or goes to the door and fusses to go inside.


At first, I thought it was because he was still tired from his doctor's appointment on Tuesday. Then, I realized that his feet must have grown overnight and his shoes were too small so I thought that was it. Nope. When we went inside, he walked just fine in his shoes. What I eventually realized was that it was windier than usual and there were guys working next door with power tools. So, I think I figured out that it's a sensory/hypersensitive hearing thing that is common for people with Williams syndrome. I'm noticing this more and more and am actually whisper/singing to him at meals because the noise seems to bother him then, too and he eats really well when I whisper to him. Thursday was bad, too but he did much better today when his occupational therapist this afternoon and his daddy this evening. 

Baby J, on the other hand, has been enjoying every second he can get outside. Other than the playground, his favorite activities are drawing with sidewalk chalk and bubbles.


In other news, Bean had his appointment with the developmental ped on Thursday. It went well - we didn't really learn anything new but it I really liked the doctor and she related well to Bean. She agreed with everyone else's assessment that he is functioning at about the age of 1 year old with the exception of speech which is more profoundly delayed. The appointment was long but he had fun playing with the various toys and showing off his party tricks. He did get a bit overstimulated and did some rocking and head banging. The doctor felt pretty confident that it was a sensory/regulation issue and I'm inclined to agree because he settles right down if I put the loaner compression vest on. Oh! And speaking of the compression vest, I got word today that the cost should be covered by insurance and medical assistance. I am so excited for him to get his own vest because it has made a HUGE difference at meals - Hooray!

I haven't heard back yet from Bean's endo yet on his labs from Tuesday but the developmental ped looked up the results in the hospital system. She told me that his calcium was in normal range (AWESOME!) but that she would leave the vitamin D level up to the endo to intrepret. I took that to mean that he is vitamin D deficient - which doesn't surprise me since he's been dairy free since birth. The developmental ped also voiced her concern about his blood pressure. I called the endo today to request the results but haven't heard back yet - I'm guessing that one of the results is still pending. As for the blood pressure, we're following up on that, too.

We don't have a whole lot of plans for the weekend except for buying new shoes for Bean. That and getting the kids outside so Baby J can get his wiggles out and Bean can be desensitized even more to whatever was bothering him earlier this week.

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In other news, I'm participating in a special needs blog hop this weekend and looking forward to learning more about the challenges and joys other families are facing. You should check it out, too! 


Wednesday, June 22, 2011

It Went Pretty Well!

Bean had his first endocrinology appointment yesterday. He needs an endo because he is borderline hypercalcemic. Also, people with Williams syndrome (WS) often have kidney abnormalities. Bean had a "normal" renal ultrasound at the time of his diagnosis but he still needs to be monitored over time.

I took him to the hospital yesterday for his 10 am appointment. We breezed through registration but ended up waiting almost an hour for an exam room. We passed the time with snacks, books, iPhone kid apps and countless games of peek-a-boo.

When they finally paged us, I was pleasantly surprised to be greeted by the best. medical assistant. ever. Usually Bean goes nuts at the first sight of the scale. The MA did a great job of getting him through the vitals and she was even able to get a resting/calm blood pressure (more on that later).

I liked the new doctor. She has treated other WS patients. She seemed very knowledgeable but also open to my input. She, like me, is concerned about bone density given that he has been dairy free since birth and doesn't get supplements due to concerns about his calcium levels. She ordered labs to check his calcium levels among a few other things. We agreed to consider some supplementation if his levels are reasonable.

She was, however, concerned about his blood pressure. It was 129/64. Resting. That's pretty high for a child his age and size. She is suggesting that his bp be monitored more frequently than every 6 months like the cardiologist recommended. She feels we should have an ambulatory bp machine so that we can monitor him at home. This is something that I will follow up on with his diagnostic referral physician and cardiologist. 

Bean was a little fussy but overall, he handled the appointment pretty well. We will see her again in 4 months.

When we were done, we went to the lab and had to wait another half hour. Bean had had enough of the stroller and being held so I let him down to explore the waiting area. It's filled with lots of interesting games and activities. He showed off his walking skills and  greeted everyone he saw. Twice. He put on quite the show and provided much needed entertainment for everyone that was waiting for blood work. 


When they finally paged us, I was a bit anxious. The ALWAYS have a hard time with him and I hate him having to put up with them struggling to get a vein. Luck was on our side, though. The phlebotomist got it on the first stick. He cried, of course but no blown veins and we were in and out in less than five minutes. Hooray!

We should have the results by the end of the week and I am hoping that his numbers will be good enough that we can consider some new dietary/high calorie options.

Bean was so worn out after his adventure. He spent the afternoon napping and was so tired after dinner that he wasn't even interested in playing outside. He went to bed with little fight and was still sleepy today.

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Tomorrow, we continue our summer tour of Children's Hospital with a visit to the developmental pediatrician at the childhood development unit. 

Tuesday, June 21, 2011

Breathe

Most of the people that read this blog are friends, family, other Williams syndrome (WS) and special needs parents, and various blog buddies. Still, I get a fair amount of traffic from Google searches. - usually about WS. One search from last week really stuck with me. Someone found my blog by typing in "williams syndrome baby sad."

When I first got Bean's WS diagnosis, my heart broke for the challenges he would face and I mourned the life that I had wanted for him. At times, I was so overwhelmed that I couldn't catch my breath.

I couldn't get enough information and I spent countless hours looking at Web sites and blogs. I connected with a group of other WS families and quickly learned about all the joys Bean has in store for me. The most important thing that was reinforced for me was that Bean is still the same amazing, joyful, charismatic - and sometimes brutally challenging - little guy that he was the day before we got the diagnosis.

The sadness quickly dissipated, the grief passed and I was filled with hope for a wonderfully magical life with my sweet dude. I realized that though he may not live the life I had hoped for him, he would live the life that is perfect for him. I realized that the diagnosis really didn't change anything and wrote about that realization here.

Don't get me wrong, we have our days. It's hard sometimes. I am a worrier and I get frustrated that we spend so much time in doctor appointments and therapy instead of playing and exploring. But, I have learned to just breathe and get through those moments. Because they do pass. Life is good and Bean such an amazing and delightful boy. I embrace and appreciate everything about him, including WS and everything that goes along with it.

So, for the parent of a newly diagnosed child, it's ok to be sad. It's normal. And know the sadness will pass. There is a wonderful support network in place. Please reach out to us. Contact the Williams Syndrome Association. They can give you a wealth of information and put you in contact with someone in your region. Contact me and I'll offer all the support I can and I will put you in touch with an amazing group of parents that have been there, done that. Your child will bring more joy to your life than you ever could have expected. Each day gets easier and each breath will get deeper.


Thursday, June 16, 2011

What's he up to?



It's been a while since I've done an update on Bean's developmental progress so here it goes...

Bean is a walker! He's finally spending about 90% of the time on his feet and is even doing well on uneven/textured surfaces. He is very pleased with himself and we couldn't be more proud of him.




With this milestone, Bean is also showing a much stronger interest in other areas of play and development. I am seeing signs of emerging speech skills. It seems that he is finally assigning appropriate meaning to "dada" and I have heard what I think is the start of "mama" a few times in the last couple of days. He is very interested in give-and-take communication with open sounds and he loves initiating games of peek-a-boo. This is huge for Bean.

He is also eating better since we started putting a compression vest on him for meals. We are borrowing one from his occupational therapist to try before buying. I'm sure we will be ordering one for him soon because it has been so successful. He's also doing something a bit silly at meal times. When he is hesitating to open his mouth, I firmly hold his left hand - has to be the left hand - and he opens his mouth as if he's a toy that is activated by pressing the button/hand. It's a sensory thing, I guess, related to his desire for deep pressure - we also see similar success when firmly holding his feet. That's kind of funny to me because he hates wearing shoes.

With these new skills, he also has some emerging sensory "things." Deep pressure input is huge for him and we've been finding ways to meet that need but he's also demonstrating some not-so-desirable sensory activities. Bean has started throwing himself backwards when sitting and we have to keep an eye on him constantly because he is hitting the ground pretty hard. He has also started head butting and head banging (well, it's not that hard - rather, head knocking).

We have desensitized him some to grass so he will play in it for short periods but he still prefers to avoid it with bare hands and feet. He also struggles in bright light and still doesn't care for wind. I bought him some sunglasses with the strap that goes around his head (I know, silly) but he won't keep them on.

Still, Bean loves to play outside and at the playground. He can't get enough of walking up and down the sidewalk and he climbs on anything and everything. I credit his walking progress to so much time spent in the playground. He insists on being on his feet so that his hands don't touch the ground (texture issue) - so that sensory behavior really worked to his advantage.


All things considered, Bean has been making huge developmental progress and we are helping him adapt when need be. I can't wait to see what he does next!

Wednesday, June 15, 2011

Awareness

Williams Syndrome Awareness Week ended a few weeks ago but much has been done since then to raise awareness.

Last Friday, ABC's 20/20 did a segment on WS. It was a beautifully balanced piece and made many people aware of the condition. I saw several people on message boards comment on learning about WS. They were so moved by the piece that they were seeking out more information and volunteer opportunities. I even saw a few indicate that they think they had found the answer they had been looking for and were going to request testing for their child. How great is that? Families will now get the specialized care that they need because a little known condition was highlighted on a national news program.

If you missed the broadcast, you can find the whole episode here. There is a pretty lengthy segment on the Casey Anthony trial to start but hang in there - it's well worth it!

Also last week, 501(c)inema released their documentary on Williams syndrome, Embraceable, on DVD. It was an official selection at the Thessaloniki Documentary Festival in Greece earlier this year. I ordered my copy and have been stalking my mailbox. I can't wait to see it! You can see the trailer here: http://www.embraceablemovie.com/ and they have copies available in the store at the same site.

Williams syndrome is such a little known condition. I had never heard of it before Bean's diagnosis. So, to me, it's really exciting to see these influential media sources helping to raise awareness. The more people that know, the better! More affected individuals will receive timely diagnoses. They will receive better, specialized care and hopefully, they will be better accepted and understood in society. I can't wait to see what's next!

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If you would like to learn more about Williams syndrome, visit www.williams-syndrome.org.

Tuesday, June 14, 2011

My Take


I'm often asked what it's like to raise a child with special needs. How do I cope? It must be so hard...

It is hard. I worry about Bean's future. How will his symptoms manifest over time? Will he "catch up" developmentally? Will he have a lot of health problems as he ages? Will he have all the resources he needs in school - and beyond? Will he be able to live independently? Will we be able to provide for him financially?

It is hard to stay calm sometimes. Bean is a lovely, charming little boy but he also has a lot of extreme sensory issues and can throw a fit that would make ice lose it's cool.

I don't get any sleep and I have drastically modified my diet for Bean's benefit.

And then there's the whole balancing life with another child, close in age to Bean, that has his own needs and demands just as much attention as his brother.

But I can't dwell on these things. Bean has Williams syndrome. It is not going to change. It is not going to go away.

I can't let this consume me. I need to have a positive outlook. I need to accept this as just one puzzle piece - of many - in my life.

Everyone has problems. There's cancer, divorce, job loss, lack of health care, discrimination, and natural disasters - just to name a few. Some people have more problems than others but we all have problems.

We are not, however, just a composition of our problems. There's so much more to life than that. There's so many positive things to focus on that I choose to leave little room in my head for life's many challenges. Don't get me wrong. I have my moments. I get tired and lose it sometimes but I really, really try to keep a positive outlook.

Maybe I'm just naive. Maybe the entire weight of Bean's diagnosis hasn't REALLY hit me yet. He is a relatively healthy child with Williams syndrome. He has delays but he is progressing nicely in terms of development. He drives me crazy sometimes with his little meltdowns but all he has to do is smile at me and it melts my heart. And things will likely get more difficult in time. But I sincerely hope my outlook and my approach doesn't change.

I want to focus on the positive things in life while making sure that the challenges we face are receiving all the attention and care they deserve and warrant. I want to maintain that balance with emphasis on the good. Yes, my life can be hard but it isn't any harder than anyone else's with young children - we just face different challenges. I am fortunate in so many ways. I have a beautiful family, an amazing husband and two sweet little boys. We have a home and two dogs and a cat. We have our health. We have a wonderful support network made up of family, friends, therapists and doctors. We celebrate all the positive things - all the accomplishments, milestones and inchstones. I think we have it pretty good. But then, that's just my take.

Thursday, June 9, 2011

I Am Not a Crafty Mama

Bean recently acquired a new habit. Well, he's been able to do it for a while. But lately, I have not been able to keep a diaper on him for anything. He has gotten so good that he can even unlatch his diaper through clothes and he has made more than a few messes.

Unfortunately, he's not ready for potty training so I had to do something.

I use cloth for the most part and my "stash" is made up mostly of BumGenius with aplix hook and loop closure (think velcro). I do use some disposables occasionally but he can get those off, too. We have a couple of Fuzzi Bunz diapers with snaps and he is NOT able to get those off so snaps seem to be the way to go.

I didn't want to buy a bunch of new diapers so despite my utter lack of craftyness (is that a word?), I decided to convert his BG's to snaps by myself. I ordered snaps and snap pliers from KamSnaps and picked up a clear/craft ruler and seam ripper from JoAnn Fabrics all for less than two new cloth diapers or one box of disposables. Also, a very kind WS mama is sending me a couple of snap diapers that she can no longer use.

My little project could have been a disaster because I am not crafty at all (remember?) but I stuck to the tutorial on the KamSnaps site and my first conversion turned out great!


I started a second diaper tonight and I am actually really enjoying the process. There's something therapeutic about removing the aplix stitch by stitch, designing the snap layout and applying each snap one-by-one. That, and I love that I'm saving some money and coming up with a solution that will keep Bean (and my floors) clean and dry.

I have about two dozen to go so it might get old pretty quickly. But maybe not. Who knows, when I'm done, I may just find another little project. But probably not because I'm really not crafty at all.

Wednesday, June 8, 2011

Strike


Don't let this picture fool you. Bean doesn't eat. He's never been a good eater and he eats very small amounts when he does eat. But lately, it's been worse than usual. Bean has been on an on-again off-again hunger strike for the last two weeks. This week, he is on again. He hasn't eaten anything but breast milk, puffs, veggie straws and coconut milk yogurt for the last four days. I'm at a loss for what to do next.

The strike started when he was working on a tooth but I think his motivation has shifted. He is a big boy now and has decided he is O.V.E.R. purees. He enjoys feeding himself (finally!) but the only finger foods he likes or will tolerate are crunchy meltables like puffs and veggie straws. We've tried cutting up small pieces of everything and anything. That just offends him and makes him stop eating entirely.

All kids go though a stage where they are ready for big kid food but they don't eat enough to sustain them. Most parents can fill the gap with purees and milk/formula. Not Bean. This stage is especially pronounced for him and other kids with oral/feeding aversions as is common with Williams syndrome and is taking him a good amount of time to learn to deal with texture.

His therapists aren't sure what to do other than wait it out. That's easier said than done because he is up all night long - even worse than usual - wanting to nurse.

So, WS mommies and moms to picky/challenging eaters...any tips/tricks/hints? This mom is tired and I'll try anything!

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Oh, and speaking of food - for those that are keeping track - fish seems to be a pass. I got the green light to try shellfish in my diet (not Bean's) next. Just in time for summer. Yay!

Tuesday, June 7, 2011

Typically Quirky


All kids are quirky. Baby J is not an exception.

He is developing "typically" and like a lot of typical 3-year olds, he has a silly streak a mile long. 

Baby J loves to play dress up and use found objects as hats. He's very in to pretend play and makes up goofy games and songs. He never just walks. He runs or walks like a robot or gorilla. His foods have to be cold and have a bite to them - forget mushy stuff - and his favorite foods are pickles, olives and pepperoni.

He also has some quirks that have me a little concerned about anxiety and sensory processing. For example, he has some pretty extreme fears of bugs and shadows and he can't stand getting his hands or feet dirty or play messy games/crafts - finger painting is a huge issue for him! These aren't just mild aversions. These activities result in full-scale meltdowns that last about an hour. He's also a fidgeter and has a hard time settling down for meals and naps.

So, I took him to see the pediatrician today. She and I agreed that a lot of his less-than-desirable behavior - tantrums, hitting, kicking, fears (especially of going #2, ew) - are very common and typical for three-year olds. She and I also agreed that Baby J may have some mild sensory things going on. She isn't sure if it's just outright sensory stuff or if it's triggered by the stress/anxiety from having a sibling with special needs. So... we are going to have him evaluated by an occupational therapist and see about some short-term, outpatient therapy.

We're going to get some support to help Baby J work through some of the things that have been challenging for him. We are also going to continue to embrace and encourage his delightful little quirks that make him the unique, witty, charming little boy he is.

Sunday, June 5, 2011

Meant to Be


One of the most important lessons to learn as a parent is how and when to pick battles.

You know those shopping carts at grocery stores with the attached cars? I always said I would never let my kids ride in them because they are filthy. That was all fine and good until Baby J (1) refused to ride in the seat part of the cart and (2) discovered these magical carts and saw children riding in them and seemingly having a lot of fun.

I fought it for a while and then decided it was not a battle worth fighting. I figured I could still keep Bean in the seat part and Baby J would be happy in the car, right?

Wrong.


Baby J insisted that his brother join him in the car and once Bean figured out what his brother was up to, he wanted in on the action, too. So, again, a battle not worth fighting. I get my shopping done, the kids are entertained, and I can clean the seats and steering wheels with wipes and wash the kids hands as soon as we are done. Everyone wins. I guess.

Yesterday, the whole family made a grocery run. Baby J climbed in to the car while I strapped Bean in. Husband was beside me and pointed something out that I never noticed before.


At that moment, I realized that the dirty, nasty, filthy carts aren't so bad. As a matter of fact, they are meant to be - at least for my family.

Friday, June 3, 2011

Decisions

One of the many joys - and challenges - of parenting is making decision after decision after decision. Medicated or natural birth? breast or bottle? Cloth or disposable? Parenting philosophy? When to start schooling? Public, private or home school. And on and on it goes.

In the special needs world, there's even more decisions to make. Public or private therapy? Or both? Which therapies? Which tools for your child's sensory diet? Integrated, special or combination ed? Accommodations for your child in school? Higher ed? Finding the right doctors and clinics. Home, independent or community living? Financial plans for your child's future? Just to name a few...

I expect that the answers for my family will change as Bean's needs change over time.


Lately, I've been obsessing over a relatively minor decision - one that I don't even need to make until the end of summer - but I can't seem to let it go... Preschool Preparedness. He will most definitely do preschool at 3 years, but I'm talking about a toddler program.

Baby J, Bean's brother, had an amazing experience in his toddlers class. Bean will be age eligible for the same program in the fall. Here's the catch... He'll be just eligible, as in his birthday is just two days before the cut-off. He will probably be the youngest child in the class, not to mention that he has significant developmental delays. I believe strongly in integration but I am so worried that he just won't be ready. He's not able to follow even one-step directions yet. He's not verbal and he's just getting the hang of walking independently. I worry that the kids will run circles around him and he'll get frustrated. And then I worry that it's just me that will be frustrated and he'll do just fine. Then there's the whole separation issue. I think he would benefit so much from being around a group of peer models but I just don't know if this is the right thing at the right time for him. If he were 6 months older, absolutely! But his age puts him at an even greater disadvantage...

The school is very supportive and pro-integration. They welcome children with special needs but they suggested reserving his space and waiting to see where he is in August. I've asked all of his therapists for input and they all have different opinions. I did learn that our county runs a (free!) preschool preparedness program for 2-year olds that are receiving services, so that is an option, too.

None of this will matter if I am back to work by then - and I sure hope I am - because the boys will be in day care. So, I don't know why I'm obsessing over this. There's so many "what ifs."

If I'm not working, I guess it will be a game-time decision. What would you do?

Wednesday, June 1, 2011

Fortunate

Lately, quite a few children with Williams syndrome (WS) are having heart cath's and open heart surgeries as well as other significant medical procedures. I feel for these families and can only imagine what they are going through. Bean has some of the characteristic health problems related to WS (read about that here and here) but his challenges are mild in comparison to others.

Still, we have a long list of specialists and appointments to make sure that we are meeting all of his needs. This morning, I went ahead and scheduled a number of follow up's and new appointments. I was holding off on scheduling these because none were considered critical and I wanted to have his supplemental insurance/medical assistance in place because we pay $50 plus 10% out-of-pocket for every specialist visit and it has been adding up. His supplemental coverage was activated today. Hooray!

This month, he will go back to his GI. He will go for an initial evaluation with a developmental pediatrician at the Child Development Unit and for an evaluation at ENT to have his hearing tested and address snoring/sleep issues. I am waiting to hear back from endocrinology but I also expect to see them in the month of  June to address his borderline high calcium levels. Baby J will head to his PCP this week to address some my concerns about his stress levels and anxiety/sensory stuff.

In July, Bean goes back to his diagnostic referral physician (she coordinates his care). He will have his 2-year "well-child" check in early September and the CP clinic wants to evaluate him again in the fall for his muscle tone/pronation. He doesn't need to go back to cardiology or ophthalmology until next year and he has been "released" from neurology.

This sounds like a lot. I know. I am going to be very busy fitting all of these appointments in AND having lots of summer fun with the boys. But really, I would much rather head to all of these appointments than take him in for even one sedated procedure, let alone a heart procedure. I know that Bean's health could change in time. And that surgery may be necessary as he grows. But for now, I am counting my blessings that he is pretty darn happy and healthy and we are going to go outside an enjoy some sun before dinner. :)