Friday, April 29, 2011

Little Mr. Smartiepants

Baby J had his eyes tested at school yesterday. They're fine. He doesn't need glasses. That didn't stop him from trying his daddy's glasses on yesterday at lunch time, though. He's very in to doing things just like daddy right now. He was excited to tell his daddy all about his vision exam and show him the sticker he got for participation. I had the benefit of hearing about the exam from his teachers so I could fill in the blanks.

My understanding is that they projected letters on the wall and then asked the children to match the letters to letters on cards or paper in front of them since three year olds can typically name a few letters/numbers but not the whole alphabet. As I expected, Baby J did great with that. He has mastered matching games.

What did surprise me was that he apparently started calling out the names of the letters projected on the screen. According to his teacher, he had a blast and entertained everyone in the room with his sing-songy announcement of each letter. "That's an E!" "That's a T!" "That's an A!" Have I mentioned that Baby J loves to sing? Anyway, what kind of mother am I that I didn't know just how many letters are in his lexicon?! And is it bad that I was beaming with pride when we left the classroom and called Husband and my mother right away to brag about how smart my little dude is?

Husband and I have made an effort from day 1 to read to our kids regularly and seek opportunities to talk about and identify letters and words and relate them to pictures and everyday objects. I knew that he could recognize certain letters like the first letter in his first name and that "Cat" starts with "C," "Dog" starts with "D," and "Ball" starts with "B" and I knew that he can sing the alphabet from start to finish. Over and over and over. But I didn't realize just how much he knew. This kid surprises and amazes me every day.

And it's such a relief.

One of the biggest sources of stress and concern for me about raising a child with special needs is ensuring that Baby J, the "typical" sibling, doesn't get lost in all of the energy we focus on Bean and getting him all the medical and therapeutic attention he needs and deserves. I worry about providing Baby J with enough opportunities to interact with peers and models and enough activities and play that are stimulating for him. Baby J is a bright little bulb and I want to make sure that we are giving him everything he needs to reach his fullest potential and that his needs are on equal footing with his brother's. As he gets a little older, he will face challenges that we can't control related to having a sibling with a disability and I want to do everything I can to minimize the stress that he will deal with. I guess, so far, we are doing ok. My Little Mr. Smartiepants knows his letters!

Thursday, April 28, 2011

Guest Post at The Cloth Diaper Whisperer


I was so excited when I woke up to learn that my first guest blog post was published this morning! It's at The Cloth Diaper Whisperer. Check it out here and leave a comment if you feel so inclined.

Tuesday, April 26, 2011

Joyful

One of the hallmark characteristics of individuals affected by Williams Syndrome (WS) is a highly social personality. This past weekend, Bean was surrounded by family and friends and Husband and I had the opportunity to really see Bean's sweet personality in bloom.

If you would have asked me a year ago about his demeanor, I would have told you that he fussed constantly. He was unhappy 22 of 24 hours in a day. He wanted me constantly, and though he wasn't really afraid of anyone, he would only settle for me.

Over time, we started to see small signs of his emerging personality. He never demonstrated "stranger danger." He was (and is) more interested in people than toys. And now, he's ok if I leave his line of sight as long as he has someone else to give him attention.

His desire for interpersonal relationships is so strong now that his feelings are obviously hurt if you don't greet him, hold him and talk to him within seconds of him laying eyes on you. Just last week, a neighbor stopped by to let us know that a light was on in my car. She was only at the door for a second and didn't directly greet Bean. The end result was a weeping toddler.

So, imagine Bean's satisfaction this past weekend when he was around so many loved ones that wanted nothing more than to lavish him with attention. Don't get me wrong, Baby J also enjoyed the attention, but Bean's need is so much more intense.

He spent the weekend going from Nani to Pappy to Uncle Andrew to Great Nani to Pop Pop to various great aunts and uncles to cousins and friends. He charmed them with smiles and grins and trills and clicks.

We even had the opportunity to meet one of my mother's friends and her son, Joey - a young adult with WS. Joey was an absolute joy to meet and Bean was drawn to him in a way that was simply amazing. Joey, however, was more interested in getting to know my adorable (female) cousin. I can't blame him. She's a doll. But Bean was persistent and he did eventually get a quick snuggle from Joey.

This weekend was Bean's first time around so many people since turning the corner from the extreme irritability. It was just amazing to see this sweet little boy in action. He was beautiful. And charming. He was sincere. And intense. He was joyful and he lit up the room.

Monday, April 25, 2011

To Nani's House We Went

The boys had a great time visiting with family this past weekend. Here's a few snippets from their adventure.

Baby J died Easter eggs with Nani.



They played.




And rested.



They hunted for Easter eggs.



And Easter baskets.




Baby J spent some time soothing my mother's cat, Ashes. "Kitty, you ok?" "Kitty, you have a boo boo?" "Kitty, are you sad?" "Kitty, it'll be ok."


This was the only low point of our visit. Ashes, 17 years old, wasn't well at all - as evidenced by her letting Baby J get so close. Sadly, Ashes passed away this morning.  Farewell, sweet Ashes. May you rest in peace.


She was a lovely cat and I am grateful that my family had the opportunity to visit with my old friend one last time and say our "goodbyes."

The boys enjoyed their adventure to Nani's house and enjoyed being surrounded by family and friends even more. We are all looking forward to our next trip.

And speaking of friends, I have a new one. I want to introduce you to Shan over at Counterfeit Fake. She featured me in a post yesterday. Go check it out and stick around to read some of her witty, insightful pieces. She's pretty bad a$$ and her birth story kicks my birth story's butt. Go. Go now. You'll enjoy her as much as I do!









Sunday, April 24, 2011

This Bears Repeating

STOP using the r-word or engaging in activities that could be considered disparaging to individuals with intellectual and developmental disabilities and insist that others do the same. In any context at any time - even out of my range of hearing. I don't care if you are joking. I don't care if you didn't mean it "like that." It is not funny. It is not cute. It is not just a figure of speech. It is not just a joke. It is not just about being politically correct. The r-word is rooted in history as a negative reference to wonderful, beautiful people that may not be able to stand up for themselves. The word is hurtful and hateful. Plain and simple.

Saturday, April 23, 2011

Over the River and Through the Woods

Ever since Bean entered our lives, I have dreaded car rides. For the first year of his life, he did nothing but scream in the car. The whole time. Even on short rides to the grocery store. So, imagine how bad the 2.5 hour trips to my mother's house were. The 2.5 hour drive would last 4+ hours because we had to stop so many times to soothe Bean. I made quite a few trips by myself with the kids and those were the worst. I made those trips because it was actually easier for me to drive up there and have extra help with the kids during the week while husband was at work than spend entire days at home with a non-stop screaming infant and rambunctious toddler. 

I'm not sure why Bean hated being in the car so much but he did. He screamed from start to finish. I'm pretty sure his reflux played a role and if it wasn't the cause it was certainly the result from all the crying. Maybe his seat was uncomfortable. Or maybe he just wanted my undivided attention. No matter the reason, he cried so hard he made himself sick. And me too. I was a nervous wreck 5 minutes in to the drive. Eventually, it got better. A lot better. I'm not sure what did the trick but a few things fell in to place:
  • His reflux is better controlled now.
  • We turned his seat around when he hit 20 pounds (around 16-17 months). I know, I know. It's so much safer to leave children rear facing for as long as possible in the event of an accident. But I felt that we were more in risk of getting in to an accident from all the stress and distraction. That, and he made himself so sick. He definitely prefers facing forward, being able to see me and interact. It seems to have made a huge difference. It was, without a doubt, the best decision for our family.
  • He has a love for music now. Anytime he starts to fuss, I just pop in a kids CD and he is happy as can be clicking and trilling along with the music.
So, I don't dread car rides so much anymore. And it's a good thing because we were making the trip to my mother's house yesterday. Getting moving is the hardest part now and yesterday was not an exception. The day started out anything but smooth. When we woke, I had yet to pack anything. I hate packing and I always put it off til the last minute. So, after Bean's developmental therapy session, I got to work. The kids did not make the task any easier. Baby J was his usual busy self and Bean threw an absolute fit because I wasn't holding him and giving him my undivided attention. I did get the packing done and the only thing I forgot was underpants for Baby J. Nothing a quick trip to the store couldn't fix. Husband took the dogs to the kennel while I got the kids lunch. Finally, when he got home, we loaded up the car and got on the road just in time for the kids' naps. 

I wished that I had soundproof headphones for the first half hour because both boys were overtired and getting their wiggles out, so to speak. It didn't take long for Bean to settle and drift off to dream land.


Baby J had different ideas. He doesn't ever sleep in the car. Not even on a 7-hour ride last summer. Either way. Not one wink. Today, he was tired but did not nap. He has quite the imagination and instead of sleeping, he made his doggy neck-roll pillow have a 45-minute conversation with his cup. He was so entertained that I didn't bother setting up the DVD player. 


He got so carried away that he ended up waking Bean after just one hour of sleep. I was worried that we might be in for a meltdown but no. Bean woke up in a great mood and "chatted" and interacted with his brother for the rest of the trip. They like to hold hands and it melts my heart.


We got there in one piece. We didn't have to stop and it only took us 2.5 hours. We went straight to my grandparents' house for dinner and the kids had a blast showing off for everyone and playing "elephant" with their Pappy and Uncle Andrew. By the time we got to my mother's house, everyone was played out - including me. The kids crashed and had a great - by our standards - night of sleep. And I'm looking forward to another good night tonight after they play with Nani, Pappy, Uncle Andrew and their cousins today.

Maybe we need to make trips more often now...

Thursday, April 21, 2011

Ideal

The Feminist Breeder is one of my favorite "famous" blogs. I've been following her for some time now, up to and including the live blogging of her home birth this morning (it wasn't graphic, I promise!). Her story touched me and got me thinking about my birth experiences and it reaffirmed my hope for a future natural delivery should I be blessed with a third child some time far, far down the road.

Baby J @ 1 day
For a very long stretch of my pregnancy with Baby J, the thought of a natural childbirth never crossed my mind until I attended a childbirth education class at the end of my pregnancy. I decided that I wanted to try for an intervention-free delivery but I wasn't putting pressure on myself. I had a lot of things working against me and I was minimally prepared. I had been having contractions for a long time and was walking around the hospital when a contraction brought me to my knees.

I had no idea what I was in for and decided at that point that I wanted the epidural. I hadn't prepared myself with the tools to cope with labor. My labor stalled so they broke my water and administered pitocin. The epidural did help me relax for a while but it wore off as I was nearing the end of transition and I felt everything. Baby J arrived in my 37th week and I forgot about all that pain as soon as I saw him. It's really true. You really do forget the pain. I was so exhilarated by the birth that I was saying that I couldn't wait for a second child just hours after delivering my first.

Bean @ 2 days
Just 18 months later, I was back at the same hospital, again in my 37th week, ready to deliver Bean. This time, I had been walking around at 5 cm for over a week and had been having prodomal labor off and on for months with threatened pre-term labor. Again, I was hoping for a natural childbirth. I was only slightly more prepared this time but I wanted to give it a shot.

I still wasn't having really painful contractions at 6 cm but the nurse cautioned me that if I wanted an epidural, it was "now or never." Even though I wasn't having a lot of pain at that point, she warned me that things would get much more intense when I hit 7 and since I was rapidly progressing, it may be too late. So, again, I freaked out and went for the epidural. Huge mistake!

I warned the anesthesiologist that I have a small epidural spot and that they had difficulty getting it during my first pregnancy. He had an even harder time. Looking back, it was the most painful - and scary - part of my labor. Each time he tried, it felt like an electric jolt shot though my spine. I cried and kept asking for breaks. I don't know why I didn't ask him to stop. For some reason, I was afraid of labor pain even more. The worst part is that the epidural didn't work, that is except for the fact that it stalled my labor. They broke my water when I hit 7 cm but that didn't help me progress so again, they administered pitocin. Remember, the epidural didn't give me ANY pain relief. Those pitocin contractions were incredibly painful. But they were short-lived. I progressed from 7 cm to complete with the urge to push in less than 10 minutes. Two pushes later and Bean was out. It was a fast and furious labor - 4 hours in total. I still wonder how long I might have been comfortable and how much more peaceful my labor would have been if I had declined the epidural.

In the end, it doesn't really matter because I have two beautiful little boys. But now I know where I went wrong in my efforts for a natural childbirth. If I ever have the opportunity to deliver another child - and I hope I do but not for a long, long time - I have a good idea of what I need to do to accomplish an unmedicated birth. I am not personally comfortable with a home birth so I would like to deliver at a local midwife birth center. I will be considered high risk for a number of reasons, so that may not be possible and I may need to deliver in a hospital. The location doesn't really matter to me. For me, being prepared and confidence are the key. I now know that I can handle the pain. If I could handle pitocin contractions through transition, I can handle anything. If I ever have another child, I will prepare myself and Husband with classes well in advance of delivery and I will hire a doula to support me and Husband through the process, remind me that I can manage labor and give me the tools to do it.

I hope that I can have my ideal birth experience someday but until then, I'll celebrate The Feminist Breeder's home delivery and congratulate her on her beautiful new daughter.

Wednesday, April 20, 2011

He's Back!

Bean is a different baby today. Yes, he still has a cough. Yes, he still sounds like Darth Vader when he breathes without clearing his throat first. Yes, he still draining straight up yuck out of his nose. But...but, but, but...

He's Back. He's got that twinkle in his eye and bounce in his step crawl. And he's just been beaming smiles at me all day long. We haven't started the antibiotic yet and we will (obviously!) continue to hold off for as long as he acts like he's feeling better.

We cancelled most of his therapy sessions this week and I'm sure the rest helped him recover. I know it was good for me.

Bean's turn-around really started last night. He hadn't eaten anything other than coconut milk yogurt since Saturday. And it showed on the scale yesterday at the doctor's office. He had lost more than half a pound since Saturday (same scale) and losing weight is just not a good thing for him. So, imagine my delight when he ate dinner last night! He didn't eat a huge amount, but he ate enough.

Then, while he was playing with Husband, he started practicing his walking skills again. He was covering 2-3 feet stretches of floor - this is the longest distance he has ever walked!



But my favorite event of the evening occurred at bed time snack. He ate 3/4 of a banana (!) and some yogurt, but that's beside the point. My little stinker has figured out how to stand up in his high chair. He thinks it's hilarious and ignores all of my attempts to keep him seated. I kept repeating, "Please sit in your chair. No boo boo's." And out of no where, he started saying "boo boo" over and over. He was very pleased with himself and it was music to my ears. He is very delayed in expressive language and imitation (and repetition!) is a huge step forward for him. I am so proud and I'm giving him every opportunity to practice his new skill.

The night continued to go well. He slept better than usual. He only woke up two or three times through the night.

So we were well rested this morning and put on a yoga video - something to entertain Baby J and help him expend some energy. I didn't get a great workout because I had both kids climbing all over me. It was worth it, though because they had so much fun! Baby J cried to do the video again!

Bean has been happy and playful all day. He still has a ways to go before he's "all better" but I'm so, so happy that he's back and better than ever!


----------------------------------
I also wanted to mention that Williams Syndrome awareness month is almost here. Our family is participating in the annual Pittsburgh Walk for Williams on May 21 in North Park. We would love for you to join us. If you can make it, please register here (for a discount) in advance. If you are unable to join us, please consider a contribution in honor of our sweet Bean. Honorary gifts can be made here.

Baby J + Egg = Eggsplosion

Tuesday, April 19, 2011

Antibiotics and Imagination

After I got the last little bit of medicine in to Bean on Sunday evening, his croup started to improve. He is still coughing. A lot. But it sounds different. Less, well, croupy. You can hear stuff moving around in there. It's pretty gross sounding and it hurts him. Every time he coughs, he cries and then the crying makes the cough worse. I feel so bad for him. There's nothing to really give to him to help him feel better other than saline and lots of steam/humidifiers. I can actually feel each cough right along with him. 

When he woke up this morning, he was really lethargic and incredibly fussy. My mother was here and he wouldn't go to her. That's how I knew he felt really sick. He just laid across my chest and cried. So, another trip to the pediatrician was in order.

The doctor thinks that Bean is running head first in to a sinus infection. So, he wrote us a prescription for an antibiotic. Bean's tummy doesn't handle antibiotics well at all so the doctor and I agreed to wait a day or two to see if he gets better on his own. If not, we'll start the antibiotic and hopefully have him feeling much better by Easter. This way though, I have the rx so that we don't have to go back again.

Baby J stayed home with Nani and dyed some Easter eggs. This was the second time in three days. This is his newest favorite thing to do and he is asking, repeatedly, to dye more eggs. Here's some pictures from Sunday:




He doesn't quite get that he needs to be gentle with the eggs and he broke a few but most managed to survive the encounter with Baby J. He was so proud of himself when he was done.


He held up a pink egg and announced, "there's a bunny in there!" Where did that come from?!?!


Thank goodness, he's an imaginative little boy. We've had to stay inside for the most part because Bean has been so miserable and the weather has been even worse. We are trying to find different ways to keep him occupied. Dying Easter eggs was a great activity. I've also been giving him some opportunities to play in water - one of his favorite past-times. But one new thing that he has been enjoying is Zumba. 

It's not my thing at all, but the last time my mother came to visit, she brought her DVD. He loved it and he's been begging to watch the infomercials ever since. He's been stepping front, back, side-to-side all over the house.  Last night, he learned how to do a little wiggle, shimmy thing. It's really cute and it's keeping him active and entertained. That's a good thing! Hopefully, it will continue to hold his interest, but I'm sure I'll have to get creative tomorrow and come up with some new ideas to keep him entertained. If you have any, let me know!

Monday, April 18, 2011

I'm Going to Miss This


Before having children, the thought of being a stay-at-home-mom never even crossed my mind. I worked very hard after graduating college to build a career and I did just that. It didn't take long for me to establish myself and begin working my way up the "ladder." I had absolutely no interest in leaving my job once I had children. My career was too important to me to risk it on an extended break. I planned to take maternity leave for three months and then return to work. Then, Baby J came along. 

He turned my world upside-down. Half way in to my maternity leave, I started dreading returning to work and stressed about it each and every day. I was with Baby J all the time and I couldn't imagine missing out on any hour, minute, second of his life. After hours and hours of conversation and negotiations, Husband and I agreed that I would return to work but would request a modified part-time schedule. Baby J would go to daycare three days a week. We did not plan financially for me to stay home. It was never even on the table. I was beyond the financial threshold that justified staying at home anyway. Not a bad problem to have, I know. I was very fortunate to have an employer willing to work with me.

It was a hard time for me. I really enjoyed working but I had so much guilt and I felt like I was missing out on so much. On work days, Baby J and I would leave the house at 6:45 and get home around 5 or 5:30. He was never a good napper at "school" so he had dinner as soon as he got home and went straight to bed. He was sick all the time with sinus and ear infections and had to take antibiotic after antibiotic after antibiotic. If you know me, you know how I feel about antibiotics. And he never ate well there, either. I think the worst part of it for me, though was that I missed his first steps. He took those at "school." Yeah. That hurt.

So when I became pregnant with Bean, I insisted that the home/work balance wasn't good enough for me. I wanted to be a full time stay-at-home-mom. Husband and I agreed to save up so that I could stay home for the first year of Bean's life and be there for all those "firsts."

The first couple of weeks were bliss. Bean did the newborn thing and Baby J and I hung out and did all kinds of fun things. Then, Bean's reflux started. Those early days were unbelievably hard. He cried. A lot. All. The. Time. He never napped for longer than 30 minutes and forget night sleeping. I found myself wishing my days away and couldn't wait until that first year passed and I could get back to work. Work sounded like a vacation to me. I couldn't wait to get out of the house. And then I felt guilty for wishing my sweet, but fussy, baby's first year away.

I started itching to go back to work around his first birthday and started telling my family and friends. I wavered at times when I learned more and more about his delays. I wasn't sure if he would get more out of being home with me or being around his peers. But still, I remained convinced that I should return to work since he can still get therapy at a day care center and he can probably even qualify for a special needs center. Then, when we got his Williams Syndrome diagnosis, everyone expected me to change my mind. Again.

Now, he's 19 - almost 20 - months and I'm still at home. I want to get back to work but it's for different reasons now. Don't get me wrong, our days are still challenging at times. Bean still wants me to hold him a lot and he's still a terrible sleeper. Sometimes, it seems impossible to get everything done with this sweet child hanging on my leg and crying for me to hold him while Baby J is running around the house like a madman. For the most part, I have a lot of fun with the boys but there are days that I just want to get away. But that's not the reason that I want to go back to work. 

I miss the intellectual stimulation. I miss talking about things that don't involve children, school, special needs, health concerns, whatever. I miss adult interaction. I miss making money and contributing financially to our home and family. I miss being able to buy things without worrying about our bottom line. And as for the practical side, we need things. We need a bigger house and a bigger car. We need to put more money away for retirement. We want to send our kids to the best schools and give them every advantage we can. And our kids need more interaction with their peers.

We're not in a place though, with Bean, that I feel I can commit to a serious job search. He needs to sleep. And so do I. He also needs to eat much better so that he is not depending on me as his primary source of nutrition throughout the day. He is very slow to gain weight and we don't want to him to plateau on growth. Once we get him sleeping just a bit better and eating (and drinking) more, I can - and will - start looking for a job.

It's amazing to me how my perspective has changed over time and even more amazing how I have come full circle. I know that returning to work is the right thing for me and my family. Someday though, when I do go back to work - and I will, I'm going to miss this. 


Sunday, April 17, 2011

Things Might Be Looking Up

By now, you know that I love watching the boys sleep and I can't get enough low-light, no-flash phone pictures. Sadly, Bean hasn't been giving me much opportunity lately. He's sick with a particularly nasty cough and cold. He had a horrific night last night with very little sleep. When he woke up for the day, he was even more miserable. So, as I suspected, I needed to give him the rx that we filled yesterday.

I didn't think it would be too big of a deal. It was three tiny pills that needed to be crushed and mixed with food, so my plan was to mix it with his favorite food - coconut milk yogurt. Simple, right? Wrong.

Spoonful 1: Gag, gulp, disgusted look on his face.

Spoonful 2: Projectile vomit.

There was still a good bit left, but I didn't dare proceed. Instead, I called the doctors office to see if there were any alternatives and took him upstairs for a bath. The bath made him much happier and the nurse suggested that I try to get the rest of the dose in to him and then bring him in again tomorrow if he wasn't any better. Oh, and we should head to the ER if he gets really bad tonight. Fun.

So, after his bath and his tummy had time to settle, I tried again. I got another two spoonfuls in before he stopped opening his mouth. I didn't want him to get sick again, so I took another break and we settled in for an afternoon nap.

He was so exhausted from two days with very little sleep so it didn't take much for him to pass out. He was still really restless though and kept waking up every twenty-thirty minutes coughing and crying. But I was able to get a couple of cute, poorly lit and executed phone pictures to feed my addiction. What's wrong with me?!?!

He woke for good and was very unhappy after a couple of hours. After he settled down, I tried the med again. He fought it, but I got it in. He then proceeded to eat a good amount of (medicine-free) coconut milk yogurt and pears for dinner. He refused to eat anything else. I'm just happy he ate something, anything.

It seems like he's starting to feel better. His cough is still bad but sounds different. His chest is not as rattley (is that a word?). He seems happier and is be-bopping around the house. I think the steroid is working but I'm reserving judgement until tonight. I'm hoping for a peaceful night for Bean with lots of sleep and no trips to the ER or visits to the doctor in the morning.

Maybe, just maybe, things are looking up.

Saturday, April 16, 2011

When it rains...

Earlier this week, we got a taste of spring. Thursday was a beautiful day. It was in the high 60s, so the boys and I went for a nice, long afternoon walk. Baby J recently decided that he's too grown up for the stroller so we took the single stroller and he "helped" me push.


When we got back, I brought the basketball hoop outside so he could practice his shot until husband got home. He had a blast!


Bean enjoyed exploring the yard.


Unfortunately, though, the weather didn't carry through to this weekend. It's been rainy and cold. Baby J has a touch of cabin fever and Bean is sick, sick, sick. He does not have the same stomach virus that Baby J had earlier in the week. He started with a new cold on Wed/Thurs. His nose dried up but then his symptoms changed and he got much worse last night. He couldn't sleep at all. He had a relentless chest cough and was making wheezing-like sounds and you can throw in a reflux flare for good measure.

I called the doctor's office this morning and they said to bring him in. Yes, they have Saturday (and Sunday) hours. That's one of the many reasons that Kids Plus is so awesome. It turns out that he has a croupy cough so the PA (he's awesome, too) rx'd a steroid. He said that we should wait a day to start it to see if he starts getting better on his own. I'm fine with waiting because the med can cause insomnia and stomach ache...the two biggest struggles we already face with Bean. Unfortunately, I don't think we'll escape giving it to him in the morning, though. He had a horrible time trying to nap this afternoon and he's a mess tonight. He's so tired but just can't manage to sleep. I'll be counting the minutes until breakfast tomorrow when I can give him the rx. I would do it tonight, but he has to take it with food...

I am so ready for this cold, rainy weather to be over, and the colds and flus that go along with it. And I'm looking forward to more days like Thursday when we can spend our days frolicking in the sun cold-free, cough-free. 

Friday, April 15, 2011

Say What?!?!


Here's a few recent gems from Baby J to get your weekend off to a fun start!

On our walk yesterday:
Baby J: That's a car. Is it yellow like a banana? (One of his favorite things to say after a walk with his pappy one day)
Me: No, it's silver like a quarter. 
Baby J: Is it nice? Do you like it?
Me: Sure.

A few minutes later:
Baby J: Oh, look at that! It's rocks!
Me: Yep! Those are rocks.
Baby J: Are they nice? Do you like them?
Me: They're ok, I guess.
Baby J: Are they cute? Do they make you happy?
Me: Uh...
Baby J: Can I have one?
Me: Sure. Please hold on to it.

A few minutes later:
Baby J: Oh, look at that! It's flowers!
Me: Yes, those are flowers. Do you know what color they are?
Baby J: They're yellow like a banana!
Me: That's right.
Baby J: Are they nice? Do you like them?
Me: Sure.
Baby J: Are they cute? Do they make you happy?
Me: Sure. They're pretty and flowers make people happy.
Baby J: Can I have one?
Me: Sorry, sweetheart. Those belong to someone else.
Baby J: (Throws rock at flowers)
Me: Now that wasn't very nice.

A few minutes later:
Baby J: Oh, look! More rocks? I lost my rock. Can I have one?
Me: No!
Baby J: But they're cute. They make me happy.
Me: Let's keep moving...

-------
Baby J: (In response to thunder) That's a big sound.
Me: Yes, it's thunder. It's loud.
Baby J: (Looking through window) But I can't see it.
Me: No, you can't see thunder. You hear thunder. Remember, you see with your eyes and hear with your ears. 
Baby J: Rain, go away! It's coming from the clouds. This is NOT a nice day.

------
After he falls and bumps his knee, I pick him up for a hug and kiss.
Baby J: I'm the baby bear. Sniff. Sniff. Sniff.

Have a great weekend!

Thursday, April 14, 2011

Sing me a song

Today was a preschool day for Baby J and it was also the day for parent/teacher conferences - our first. While I was waiting to be called in to talk to his head teacher, I felt like I did as a kid waiting to be called in to the principal's office - not that I ever did anything that would have gotten me in trouble...

I've mentioned before that I am always a bit nervous that I am missing something with Baby J because I am so focused on Bean and his health and developmental challenges. There was no reason to be anxious. The meeting went great. Baby J is doing well and he is developmentally appropriate. He is learning to play with his friends, take turns and participate in all of the activities. I was a little surprised to learn that he doesn't say much there because he is a chatterbox at home. His area for growth is transitions, but that wasn't a surprise to me. We have challenges at home moving from one activity to the next, too. We'll continue the strategies we've been using - countdowns and timers.


He gets so much out of school and interacting with his peers. I really think this has made him a better playmate for his brother. He has learned to sit for brief periods of time for stories and he'll sit and "read" a book to Bean.

School has also really fostered Baby J's love for song. He has always enjoyed all things musical and singing songs, but his category of songs (and words and sentence structure) has really exploded since starting school. Baby J talks constantly now but when he isn't talking, he's singing.

He has also become keenly aware of his brother's interest in music. Music, especially children's voices, is very calming for Bean. Every time Bean fusses now, Baby J starts singing to him. It's usually "The Wheels on the Bus." It usually works. Even at doctor appointments. Baby J sang yesterday at Bean's appointment with Dr. C and I really think that's what helped keep Bean calm for the appointment.

We stopped at the grocery store on our way home from Bean's appointment yesterday. The whole time we were walking through the aisles, Baby J was singing Christmas carols. And he was loud. First, it was Rudolph. Then it was Jingle Bells. I tried explaining that it was not the season but Baby J didn't care. And neither did Bean. He was happy as could be and clicked and ahh'd along with his brother. The passers-by didn't seem to mind either. I saw plenty of amused faces and Baby J and Bean beamed back at their audience.

Then, on our walk to the car, Baby J sang a rousing rendition of "We're Walking to the Car." It is a variation of "We're Walking to the Gym" to the tune of "The Farmer and the Dell" and he learned it at school. I think it's pretty cool that he can transfer his current activity to a song that he learned at school in an appropriate way. And I'm thrilled that an early preschool program is helping me give him the tools to do just that!

Wednesday, April 13, 2011

OT, Dr. C, Dr. G and a DB

Today was much better than yesterday. Baby J is feeling much better and he even slept in until 9:15. He woke just as Bean's OT was showing up for this morning's session.

I had lots of news to share with the OT. I was excited that Bean has been eating much better - pretty much everything I've been offering him as long as it's a smooth puree and I alternate spoonfuls with his coconut milk yogurt. He also showed off his new talents with puffs, Pop Chips and diced, dehydrated fruit and his newest trick, drinking water from a Camelbak cup. He has refused any other cup we have tried but this one seems to be a winner. Now, if only I could get him to drink something other than water, you know, something with calories, but I digress...

Bean was having a good time and it was a successful feed but we needed to cut the session a bit short because Bean had an appointment with his GI, Dr. C, this morning too. So, we wrapped up with some soothing techniques to help calm him before his appointment and his therapist helped us get out of the house which is always a challenge with my two little boys.

The appointment went well. Bean's digestive issues are stable and he is up to 21 lbs!!! He's still not on the "typical" growth chart but that's ok because he IS growing and he is making developmental progress. Dr. C has played an instrumental role in getting Bean to this place. Long before we knew anything about Williams Syndrome, Bean's troubles all seemed to be related to his digestive health. And now, after trialing countless meds on various dosages and implementing dietary changes, all under Dr. C's direction, Bean is an incredibly happy and relatively healthy little boy.

But that wasn't always the case. As a young baby, Bean demonstrated signs of extreme "colic." I put "colic" in quotes because I don't believe it exists. "Colic" is often defined as sustained crying for no apparent reason. I believe that there's always a reason that a baby cries, especially a very young baby, and that doctors and parents need to do their job to figure out why a child is so unhappy. In Bean's case, it was clear that he was in pain. That cry was unmistakable.

His pediatrician, Dr. G,  was exceptionally supportive from the beginning and insisted that there was something more going on. As a side note, Dr. G and all of the pediatricians at Kids Plus Pediatrics are amazing and I recommend them to any parent! So, he referred us to GI at Children's because it was clear to him that Bean had reflux and some dietary protein intolerances. We were assigned to a doctor that was new to GI. She had previously worked in the ER so one might think she would be competent, but... Well, we dubbed her, "DB," for "dumb not-so-nice-expletive-that-starts-with-the-letter-b." And she really was that, a DB.

She prescribed inadequate dosages of medications (note that I am not at all interested in giving my kids unnecessary meds, but he really, really needed relief.) At two months of age, she said that he was just a fussy baby with a touch of reflux and colic and to let him cry - never mind the fact that colic is NOT a medical diagnosis, rather a behavioral description. He was beyond inconsolable for a minimum of a three-hour stretch at least twice a day and even screamed for 6 HOURS STRAIGHT once. The cry was like nothing I have ever heard. It sounded as if my poor child were being tortured over and over and over again - and in effect, that's exactly what uncontrolled reflux was doing to him. Sometimes adults mistake reflux for a heart attack but they are able to communicate what is wrong and get the relief they need. A baby can't do that.

DB ordered minimal testing which only confirmed that he had reflux. She wanted me to stop breastfeeding and start feeding him $40-a-can hypoallergenic formula. She felt that my elimination diet was extreme and that I couldn't possibly eliminate all dairy in my diet. Watch me, DB...

At four months old, the intolerances were controlled by my diet and she even admitted that to me, but she continued to stress that his fussiness was behavioral even though an upper GI showed reflux, a distended tummy and delayed gastric emptying. She continued to prescribe inadequate dosages of medication. I did a lot of research on other options but she was not willing to try any alternative (safe!) meds or order any other testing. She felt that I was overbearing and unreasonable. She thought that I was stressed and everyone would be much happier if I just let my child cry himself to sleep despite mounting evidence that he was in pain. Seriously, let a child in pain cry?

At seven months of age, she dismissed Bean as her patient because she felt that he really didn't have a problem, that he should have grown out of his reflux by that point and there was nothing else she could do to help. All along, Dr. G was suggesting that we try to get in to see Dr. C, a very well respected GI nearing retirement, because he didn't agree or support DB's approach. Being "dismissed" by DB worked out really well because Children's was giving us the run around about switching doctors. So, it was a fresh slate. We had to wait a couple of months to get in to see Dr. C but it did finally happen.

In the meantime, I got my hands on Bean's medical records. DB was very clear in her feelings about me. Her notes to Dr. G said that she did not feel that Bean really had any extensive medical issues, that I was "extreme" in my diet and refusal to let him cry when in pain and that I must be suffering from postpartum depression because I once cried on a phone call with her when I was pleading for more medication for my child. She didn't quite get that I was exhausted, overwhelmed and dealing with a child that cried non-stop and had to be held every second of the day or he would cry so hard he would make himself sick. Sure, I was down. I was down because I had a sick child and I could not get his doctor to help me. D flipping B.

Fortunately, Dr. G disagreed with everything DB wrote and managed Bean's care with adequate meds until he could get in to see Dr. C. We saw Dr. C for the first time when Bean was about 11 months old. He ordered several tests and found that Bean had some erosion and inflammation in his esophagus from the uncontrolled acid and a hiatal hernia. Dr. C confirmed my understanding that some babies outgrow reflux between 6-9 months but that is certainly not the rule. And Bean, to this day, has reflux issues but it's pretty well controlled now.

Dr. C and Dr. G encouraged us to continue looking for answers to explain Bean's health and developmental delays and fully supported my dietary changes to continue nursing Bean. I should note here that Kids Plus also owns The Breastfeeding Center of Western PA and most of the docs are also certified lactation consultants - you should really check them out! They took the time to explore various treatment options and are responsible for getting Bean to the point that he can finally eat without pain.

Because of the things that DB wrote about me, I had to work extra hard to gain the respect of Bean's various specialists. But I have earned their respect. They all get that Bean is not a "typical" child and has complex medical needs and they respect that I am his mother and am doing everything I can to ensure the best quality of care for my son.They accept and encourage me as an informed parent. I seek as much information as possible and am an active participant and member of Bean's care team.

I can thank DB for one thing. I learned how to be a true advocate for my child. I knew something was wrong and I refused to accept her opinions. I set aside my pride and pushed for Bean to get what he needed. I did not care what she thought of me. I just kept pushing. I can't imagine where we would have been if I would have accepted DB's advice. He would still be in pain today and we may not have pursued all of his treatments and therapies. We may not have even pursued a genetics evaluation.

I have learned of at least three other families that have had similar experiences with her. It's disgusting, really, that a doctor is so unwilling to do her job and listen and accept parents as experts on their children. I sincerely hope that no child is suffering because of her negligent care and parents that don't have the knowledge and/or confidence to fight back.

Obviously, I am still very angry with DB and often think about writing a "this is not acceptable" letter but I'm not sure that it would matter.

Still, I am grateful for what I learned from the experience and I am now confident in advocating for Bean to get all the resources he needs. And I am so very appreciative of Dr. G and Dr. C for recognizing that there was something more going on with Bean and encouraging me and helping me to find answers and set up necessary supports. Because of them, he was able to take a peaceful, pain-free nap this afternoon. See?

Tuesday, April 12, 2011

I can't stay away


Baby J woke up this morning with a big, nasty stomach bug. My mother, aka Nani, was here so she got up with him. I didn't know that he was sick until Bean granted me permission to get out of bed but I figured out that something was wrong as soon as I saw the look on his sweet little face. He couldn't keep anything down, not even a sip of water. Poor baby. It was one of those days that he just wanted to cuddle with his mommy and watch TV. And that's not a common thing. He never stops moving.

Thank goodness Nani was here because we had two scheduled therapy sessions. If she wasn't here, I would have needed to cancel the sessions so that I could manage both kids - that and I didn't want to expose the therapists to Baby J - and it's tough to fit in two make-up sessions later in the week. As usual, Nani to the rescue!

Nani is more than competent to handle Bean's therapy so I prepped her with information and my questions for the therapists and then Baby J and I headed up to my bedroom with his DVD player and spent the morning with his close friends, Thomas and Elmo. During each session, at times when Baby J was engrossed in his video, I went downstairs for a quick chat with the therapists. It's not that I don't trust my mother, it's that I just can't stay away. I have a need to be involved in every little thing my kids do. Really, I was only away from Baby J for about 5 minutes each time, but I couldn't help myself.

After the two sessions, Baby J and I came downstairs and it was clear he was starting to feel better. He wanted to eat so bad - and if you know him, you know that he never wants to stop playing long enough to eat. He was going through the cabinets and asking for anything he could think of. I let him have a few plain mini pancakes and some water. He kept it all down, thank goodness, and was even hungrier after his nap. I'm happy to report that he is like a different kid this afternoon, too. Keeping food and drink down. Much happier. Much more playful.

Speaking of play, Bean had two great sessions. He engaged in some play therapy, practiced standing and walking, ate a great lunch and is up 1/2 a pound since last week. I am dreading him catching the bug - which I'm sure he will because he always does - from his brother because it usually results in at least a short-term developmental set-back. That and we still have several therapy sessions and a GI appointment this week and no Nani to help reduce the load.

And speaking of Nani's help, I was shocked last night at bedtime when Bean only wanted her to put him to sleep. He didn't want anything to do with me. No Nursing. No nothing. It was a great break. Still, I felt the need to ask several times if she was ok or if she needed me to take him. Of course she was ok, that was just another example of my compulsive need to be involved in everything.

I appreciate her help more than I can say. We are able to accomplish so much with the kids when she's here. Now, if only I can let go a bit more and really let her - and others - help. I need to take step back and sometimes, I need to stay away.

Monday, April 11, 2011

What do I say?

As Bean gets older, his delays are more and more evident. Now, when we are around friends that have kids the same age - or even (sometimes much) younger than Bean - it is easy to see that he lags behind developmentally. It bothered me at first but I have come to terms with his disability and have accepted that he will meet milestones when he is ready.  Our friends have been very open and interested in Bean's progress and I have enjoyed having the opportunity to talk with them about Williams Syndrome (WS) and the ways that Bean is affected by this condition.

I don't consider WS, Bean's delays or his health concerns to be taboo topics and I am not at all bothered by talking about it with anyone that is interested. I believe that awareness and education are incredibly important but I have found myself in some situations where I don't really know what to say. I'm talking specifically about conversations with well-meaning strangers - typically grandmotherly-like baby-crazy women - in the grocery store, Target, Costco, etc...


Bean is an incredibly social little boy and engages in "conversations" with anyone that makes eye contact with him. He's not exactly verbal yet, so his conversations typically consist of huge smiles, giggles, clicks, tongue-rolls and raspberries. It's unbearably cute, really and not at all out of the ordinary for a baby or very young toddler. And since he's teeny-tiny for his age, he can pass for a baby or young toddler. Still, the question of his age always comes up. I am not really all that in to lying so when I answer, "19 months," I am met with a blank stare. The stranger usually responds, "but he's so small" and then starts directing actual questions at Bean expecting answers.

"Do you like cheese?"

"What is your favorite food?"

"What's your favorite toy?"

"Do you like to kick a ball?"

And so on. And so on.

I struggle with how much information to share. Is she really interested? Do I tell her about all of his food intolerances and aversions? Do I tell her that he has an array of digestive problems and a heart condition? Do I tell her that he doesn't have any words yet? And say "nope, not even 'mama' or 'dada.'" Do I tell her that he has global development delays and then explain what that means? Do I tell her that he's not running or jumping yet? Or even walking independently?  Do I tell her that he has WS, a relatively rare genetic condition? Answer her question about future children with a "possibly"? And no, another child is not at all likely to also have WS? And reiterate, "no really, that's not a concern at all"? No. No. No. No. No. No. No.

Don't get me wrong. I don't mind talking about any of these things. In most cases, though, it's just way too much information for polite conversation. Really, what I have figured out, is that these grandmothers/aunts/great aunts just want to talk about the little ones in their lives. If I pause for just a second, the well-meaning stranger will usually fill the silence with all of the wonderful things their sweet grandchild/niece/nephew is accomplishing. And I'm truly happy for them. They are not really all that interested in the answers to their questions they just want to look at the cute baby and make goo goo ga ga faces and talk about their families. And that's ok. That's human nature.

For the strangers that really do seem interested, I start with the first question. I let them know that Bean is not verbal yet and is unable to answer their questions and I then go from there. The subject of delays and disabilities can be uncomfortable for someone that has not had prior exposure though and it's a fine balance. I'm learning to better judge each encounter but more often than not, I struggle to figure out, "what do I say?"

Saturday, April 9, 2011

Progress

This past week, Bean has made a lot of progress in a lot of ways. One characteristic of young children with Williams Syndrome is that they have feeding difficulties and trouble with texture. Bean is not an exception. He is still eating smooth pureed foods. We recently started introducing some more texture with limited success and then he got sick and that went out the window. So, we decided to try for some more variety of flavors. We had tried this several times with no success but I guess he was ready this week. All week, Bean has been eating the same things we have been eating for dinner - just pureed smoothly - and he has been loving it. This week, he enjoyed pot roast, chicken and rice casserole and meatloaf, mashed potatoes and green beans. It's been great because he is getting lots of protein and veggies that he has refused for so long. I'm hoping that the added nutrition and calories will translate to developmental progress and physical growth.

I also got brave and decided to try puffs again. For anyone that is interested, Plum Organics and Happy Baby Foods make great, easily dissolvable gluten free puffs. Given Bean's recent regression with texture, I didn't really have any hope that he would tolerate the puffs. Imagine my surprise and pure delight that he not only tolerated them, but he couldn't get enough. For the first time ever, no gagging. No coughing. No vomiting. He managed to pick them up with a combination of palm grasp and budding pincer grasp. This is huge for him. Really, truly monumental progress. This is the child that gags when you touch his cheek with a piece of solid food and here he is eating pieces of cereal. He was almost as proud of himself as I was of him! I ran out and bought three new flavors so that he doesn't get bored and he really seems to be enjoying them.



Bean also had a fantastic developmental therapy session. He was playing a turn-taking game with his brother and the therapist was working on the sign for "my turn." Bean didn't do the sign but he did repeatedly say "mah" as if he was saying "mine" at the appropriate time. For a child that is not yet verbal, this is remarkable. He also consistently gave the sign for "more" in a variety of circumstances. His communication was consistent. It was appropriate. It was deliberate and there was no mistaking his intent.

Baby J also made progress this week. He was in a much better mood yesterday. Also, you might remember me mentioning that he really misbehaves when the developmental therapist is here. He has just really had a hard time with her and I don't know why. Last week, he actually told her to, "Go away. I don't like you anymore." Seriously. I could have died. Thanks, bud, for making me look like the worst mom ever in front of the behavioral expert. Geesh!  He did great today, though. He spent part of the session watching a dvd on his player and the rest playing turn-taking games with his brother and the therapist. He played nicely and didn't fight over wanting all the turns for himself. Not one nasty word escaped his mouth, thank goodness. And speaking of nasty, Baby J accomplished a certain unmentionable task related to potty training this week. We threw a huge dance party and he got to call all his favorite people to share the news. Husband and I couldn't be more proud of our biggest little boy!

After therapy, we got lunch and I was looking forward to settling in for an afternoon nap. I was exhausted from a long week of doctor appointments and therapy sessions and the kids were beyond tired. That was not to be. While the boys were eating, I called to schedule Bean's opthamology appointment. Our options were June or a cancellation that had come up yesterday afternoon. So, off to the opthamologist we went.


Bean slept in the car. Baby J did not. I usually try to avoid appointments when I don't have a sitter or help with Baby J because Bean is such a handful at the doctor. The appointment went well, though. Bean did pretty well. He fussed a bit but he didn't have a real meltdown. He is slightly far sighted but not enough to need glasses. At least for now. Baby J did great. He sat, played with my phone and sang to Bean when he needed to be soothed.


I am amazed by all that we accomplished this week. We had appointments with cardiology, the CP clinic and opthamology and endless therapy appointments. On top of that, my kids made amazing developmental and behavioral progress. If Bean continues this way, he will surely overcome some of the hurdles that have been holding him back. Happy Weekend!

Thursday, April 7, 2011

Heck No, AFOs and the Worst Mom of the Day Award

This is a picture that I took of Baby J last night. He was in a good mood and being a big goof. I wish that mood carried through to this morning. Something, I have no idea what, woke him up way too early this morning. Anyway, it was around 6:30 so I went in to settle him down and try to get him back to sleep since he usually wakes up around 8:30 or 9. He was having none of that.

Eventually, I managed to pick him up and put him back in bed. That was a challenge because Bean was sleeping in my arms. It's quite a funny visual really. My bony frame holding a 20 lb sleeping baby and struggling to get a 30 lb tantruming, wet-noodle, crying toddler back in to bed. I can't lay Bean down to sleep because he screams bloody murder and makes himself sick, remember? So, I did get Baby J back in to bed without waking Bean and I sat down in the chair in Baby J's room thinking that my presence might help soothe him. Wrong. He just screamed and cried and whimpered and thrashed around. He was more agitated with me in the room so I left. And he went back to sleep. And then he woke up again. And then he went back to sleep again.

I had to wake him up at 8:00 because today is a school day. I know, I know. Bad Idea. He got up on the wrong side of the bed. Big surprise. "I don't want to wake up." "I don't want to go downstairs." "I don't want to eat." "I don't want to get dressed." "I don't want to go potty." "I don't want to go to school." "I don't want to stay home." And on and on and on. I'll admit that I lost my patience. Yes, I yelled. I'm not proud but it happened. A couple of times. And he cried. And sulked. It doesn't happen often but I'm not sure why I ever let myself get to that point. It accomplishes nothing and just makes us both feel worse. I mean really, fighting with a 3-year-old serves no purpose. It just turns me in to a 3-year-old. I feel like the worst mom in the world when I behave that way.

I thought about keeping him home from school on his request but decided to take him anyway. I knew he would regret not going and I would hear all about it all. day. long. So, we went. When we first got there, he hung on my leg and asked me to stay but he wasn't overly upset. Then, another little girl got very emotional when her mom tried to leave. So, Baby J freaked. His teacher did a good job of distracting him so I could leave. When I peeked in the room a few minutes later, he was happily playing with the Little People castle thing. Awesome.

So Bean and I did our thing for a while and when we went to pick Baby J up, he was in a great mood. Such a good mood that he didn't want to leave and wouldn't stop playing with the castle. He wasn't listening to me so I tried to bribe him with lunch from McDonald's (worst mommy of the day moment). That didn't work so one of the teachers helped me transition him out the door.

I helped him get in the car and told him to wait for me to get Bean strapped in. That's our routine. I help Baby J in to the car, strap Bean in and then go back and strap Baby J in. It works because it's too hard for me to strap Baby J in while holding Bean and Baby J is safe from moving cars if he sits in the seat. So, I pulled out of the parking lot and realized I forgot one thing. I didn't strap Baby J in (really, really bad worst mommy of the day moment). Thankfully, I realized immediately and pulled in to the other parking lot entrance and got out to strap him in. Baby J threw an absolute fit. He thought he was hot stuff without the straps. I warned him that he wouldn't get McDonald's if he didn't settle down. He didn't settle. Just screamed more and more about wanting chicken nuggets. I didn't follow through with the punishment (another worst mommy of the day moment). I just wanted quiet. I took him to McDonald's . It actually turned out to be a good thing because it seemed to turn his mood around. I thought for sure he would take a great nap given that he woke up too early and played really hard at school.

Wrong. These pictures are from yesterday. He napped beautifully yesterday. He started in his bed. Slept for a while. Woke for a minute, crawled on to the floor and passed out again. Today was a different story. He fought it so hard. He played with stray threads on his blankets and even his eyelashes and his lips. Anything to keep from falling asleep. I knew he needed sleep and I was getting so frustrated so I yelled (yet another worst mommy of the day moment). Again. Yeah, that's going to work. Yelling will help him settle down and sleep. So, no. That was a big fail. And Baby J didn't take a nap. I feel like my parenting with Baby J was a colossal FAIL today and I am determined to lose the Worst Mom of the Day Award tomorrow. I will do better. He deserves better.

Bean, on the other hand, is having a great day despite having a thoroughly overwhelming and exhausting day yesterday. He had his appointment at the CP clinic. Though it was draining, I'm glad we went this route instead of just seeing the physiatrist. I had to get him up much earlier than his usual wake time and we were there all morning. The day started out with the OT. We talked about a lot of his fine motor, feeding and sensory issues. Then came speech. The ST talked with me for a while and then did the REEL assessment. Bean's receptive language is delayed but not too bad. He compares to 13-15 month olds in receptive language - that would be just enough to qualify for services. He is, unfortunately, much, much more delayed in expressive language. He compares to 5-6 month olds. Ouch. For anyone that has trouble with math, that's a 68% delay. I knew he was delayed. Really, really delayed. I do his HELP strands every couple of months, so I know he is really behind. But still, it was hard to hear. This assessment is a good thing, though because the ST is making a recommendation that he begins receiving speech therapy right away instead of waiting until he is 2. I'm hoping that her recommendation will help push it through the system that recommends waiting until 2.

The PT and physiatrist were next. Bean was pretty worn out at that point and did a great job of expressing his displeasure. Still, they were able to see what they needed to see and they do not feel that he needs AFOs right now. He has low tone, but it's mild. He pronates, but it's mild. He's making progress on his own. He's standing independently and taking one or two steps occasionally. They will do another assessment in six months. He should be walking independently by then and it may cause too much stress on his ankles so they want to reevaluate but they were very optimistic that he will be fine without the extra support of orthotics.

The appointment concluded with a social worker talking with me to see if there's any thing he can do to support our family. This was really fantastic. We are currently in the process of getting approved for supplemental insurance/medical assistance for Bean. It's a very bureaucratic process so even though our application is already in process, he's going to follow up with the case worker at medical assistance and try to help push it through. Awesome! If the time does come that Bean needs AFOs, the medical assistance will help pay for it. For now though, we're going to save that money and say, "Heck no, AFOs!"