New doctor in town

Today we went to Children's to visit a new doctor - an orthopedist. Our pediatrician sent us based on the new diagnosis Brady has, radioulnar synostosis. She figured an othopedist probably wouldn't do anything at this time because of his age, but moreso to be seen by a professional and get Brady's name in the office.

We saw Dr. Bae who was fantastic - we were in and out of the office within 25 minutes, including weight and height check. We could have stayed longer if I had more questions for him, but it was all pretty simple. Basically, there is nothing they will do for Brady in terms of surgery, now or in the future. His arms go all the way to neutral position (like they are ready to clap) and therefore he will be able to adapt to life. He checked Brady's spine (fine!) and told us to check in with him once a year so he can follow along with Brady's progress and check for other things that are common with William's patients.

Brady's yearly assessment

Who is that handsome guy in the mirror??


It's been hard to get on here to write what has been going on in our world. There's the regular life things --my car won't start, working on Cub Scout activities, working, having a cold, caring for sick kids, school vacation, etc. -- and then there's the I'll-update-everyone-on Brady-but-I-don't have-all-the-info-yet, and lastly there's the "where has my head been lately?" question that just looms out there.


So, we'll do the easiest one today: Brady's year assessment from Early Childhood Intervention. Last Saturday, Brady's OT Tara, PT Lisa, and ST Vikki converged on my house for a two-hour year assessment. Brady started PT in February of 2006; ST in June, and OT in August. At this meeting, Brady was tested in areas such as gross motor, speech, fine motor, cognitive, social interaction, self care and communication. We reviewed the old six month goals and made new goals and strategies. His health was documented, a feat Lisa acknowledged took her longer to do than for any other one of her patients since it was a long a lengthly list. She even forgot his latest - radioulnar synostosis - in one part, although she did get his glasses in.


Before the meeting, Lisa asked if I wanted his developmental age written in the report. I guess there are people who may be discouraged or unhappy actually seeing in print the "actual" age the child is performing at. I had no problem with the developmental age; in fact, I was very interested to see where he did lie. Discouraged or unhappy? Nope - I KNOW he's delayed, it's not a secret nor something that I could hide if I had a problem with it. I think knowing what levels he is at will only help me in helping him achieve his goals. Brady's average "age" was about a six-month delay, which everyone seemed to be happy with. His low muscle tone accounted for the lower "age" levels, for example his gross motor was at 5 months (not walking, crawling, or sitting independently, although he is thisclose to mastering that feat) and feeding at six months (he doesn't have the strength to hold a bottle). But his cognitive was at 11 months, social interation and fine motor at nine months and self care at 10 months. The therapists and I agree that in the next few months Brady will be jumping further along... we already see so many differences with him.



We had some happy surprises during the tests. Brady did a few things we didn't realize he could do. He played peek-a-boo with a toy and a blanket, moving the blanket out of the way to see the toy. He also tried to turn pages in a board book. I had started reading with him a while back, but stopped because he didn't seem to be looking at the pages so much. Well, we are all about the books again! (Maybe it's his glasses??)



Another happy surprise came with writing the report. Lisa noted that another reason the report was harder to write for Brady was because they realized there was a lot he seemed to understand but couldn't do, mostly because of his low muscle tone. For example, she pulled a string that was attached to a toy dog on wheels. Brady watched the dog move along. She gave him the string, and he brought his arm back to pull it, watching the dog (this shows he knows the dog was going to move with the string). The string was a bit long and he doesn't really have the strength anyway. But they all acknowledged he was trying to move the dog.


I was actually a little surprised his feeding was at six months because I thought it should be younger, but he had mastered the goals on the 3-6 month age and was only missing one goal in the next age bracket. His feeding has been a lot better, which I am attributing all to not having a cold. When this child has a cold, all bets are off. Just take off for the week because he won't eat food, won't have a bottle (although he ate enough to gain a pound in one week), drip from that nose 24/7. Now that he's not sick, he has been downing the bottles, eating some food, and chatting and attempting his half-smiles more often. He actually seemed to be almost laughing the other day when I kept kissing the back of his head.


We are also still taking the Prevacid. We were taking one tablet every morning but now we are taking 1/2 tablet in the morning and 1/2 tablet in the evening. Both ways last 24 hours. I am not sold that it is working, but since it is not hurting I am going to keep at it another month.

We are all really pleased with Brady's progress and the assessment. His OT is off on maternity leave after tomorrow, but I opted not to get a new OT. She is going to call in and we'll see her once a month. She is fabulous and very knowledgable and I would hate the idea of breaking someone new in. We're going to start going to a playgroup sponsored by Early Intervention so that will replace the hour we had OT. The playgroup is in the 9-to-12 month age range, which is applicable for him. Hopefully we will like it and get to know a few others in the local area in similar situations.


I feel really good about the assessment - I feel like Brady is on a path and we're working it right. His personality is starting to show through a little more and I can't wait to see what a cute little bugger he is going to be.

Prevacid anyone?

Just checking in on Prevacid for those who use it... can you tell me your child's experience? Brady was doing great at first on it, but I can't tell if it's not working or because of cold symptoms he has right now. We are giving it to him once a day in the morning. Is nighttime better? More than once?

Don't worry.. I will ask the doc too! But I was just wondering other's experiences... thanks!!!!

Here is one of Brady's pics from his photo shoot the other day. We may need to get the glasses fitted again, they ride a little tight. His hair will never cooperate!!

They're all nuts

I have a feeling I am about to get slammed. If you see a bunch of parents wielding "Down with Peanut Butter" and "Food Allergies R Us" signs with torches and pitchforks heading in my direction, don't worry. I already know they are coming.

I kind of asked for it. I was silent no longer on a peanut allergy forum where about 90 percent of the parents are diehard food allergy "experts" and would wrap their children in bubble wrap before dropping them off at school. Michael, my eight-year-old, is allergic to peanut butter and peanut oil and I sometimes check out the peanut allergy forums to see what's new.

Short version: a parent stated she was going to pick up her child before the Satan-filled Valentine party at school because she was concerned that the nut-free room would be infiltrated with wrapped lollipops without ingredient labels. By the time I read the topic, nine parents had agreed wholeheartedly and vowed to start a revolution within all their schools across the U.S.

Now, I won't bore you with all the details, but here was my answer to this:
My PA son is in third grade. The nurse in our school is very strict about food/candy in the classroom - none! - unless it passes through her first for her approval. She usually calls me to make sure. I have often brought in cupcakes for my son's class as his is the only food allergy in the room.
HOWEVER... my point is this: I would NEVER take my son out of school before a party. I don't want him to feel ostracized. I want him to learn how to take care of himself -- which he does very well. He ALWAYS asks wherever he goes about the ingredients and calls me. I am VERY comfortable with my son being in situations where food is served without me (meaning at a friend's house, not alone somewhere). I firmly believe that is because he understands his allergy straight on.
He understands it because we live in a world with peanut butter in it - and he needs to learn how to live in this world with it. By taking him out of every situation where there may peanut butter is NOT teaching him how to handle himself without his mother or father there. Do we go into the candy store that is called the House of Nuts and Candy??? No. Do we go to the restaurant Texas Roadhouse where people throw peanut shells on the ground? No... but we go to birthday parties and other parties. And we always have.
Please don't get me wrong - I do not support putting children in harm's way. I am not saying leave out a PB&J sandwich and see if he touches it. I am saying that by not letting them learn how to live in this world where there is PB out there he will never learn how to live. He will always be scared, he will always be afraid and he will feel gypped because he never went to a friend's birthday party or school Valentine party.
I am not judging anyone out there regarding this - we all parent to the best of our ability and we all love our children. I just find that I seem to be a minority on these boards in regards to the best way to keep our kids safe. I feel the best way to keep MY kid safe is to teach him how to be safe and let him live it.

I always need to put disclaimers in otherwise people write in about how they are doing this because they love their children, blah blah blah. I KNOW they love their children. I KNOW they are nervous and just want to be 100 percent sure their child will be safe. But the point that I was making that will probably go over their heads is that I am not helping Michael deal with his allergy by taking him out of every single situation where he can learn what to do. If he is working one day at an office, do you think I can go in to the president and say, "Excuse me, please put away your macadamia nuts with peanut oil residue because my son is allergic"? Umm.... no. And that is why my eight-year-old is VERY knowledgeable about his allergy (just ask him!) and does not have a breakdown when he can't eat the cake at a birthday party (which is a hot topic on those boards, apparently). I guess I was fed up. I wanted to shake someone and say, "Seriously??!?"

This topic has me thinking about my attitude in general regarding these kind of serious situations. Michael's allergy, Brady's William's. Someone once called me laid back -- "Have you always been this laid back?" -- about Brady's condition, I think if I remember correctly. I worry. I do. Stray thoughts come through about his health, his weight, his delays. But they are what they are. I do worry, I am concerned with what the future holds and how we will live through it all. I have my own mental breakdowns on how Brady is progressing, the slow snail pace he is. But all I can do is help him get along further in life --have his therapies, go to the doctor's, have a positive attitude, do what needs to be done. Just like Michael, keep a watchful eye out there, guide him, but let him find his way. The means on dealing with both is not really that different from each other.

(I just checked the peanut allergy forum. One person already wrote back that she agrees with me - yeah! Finally, the minority speaks!)

(Sat. morning - it has begun! There are four people not just disagreeing with me, but SLAMMING me. I don't believe I slammed anyone. I have also received two private emails from people agreeing with me, but not wanting it to be known because they don't want to get singled out on the board. Disagreeing is FINE, I have no problem with that... one post disagreed with me but was not obnoxious about it.)

Our sweet Valentine, Shelby

I write with a lump in my throat today. Our beloved cat Shelby passed away today from renal failure. She went rather quickly, only seeming to not be eating a lot for the past two weeks. I brought her to the vet this morning for them to check her out and they called me a few hours later with the news. Her body temp had dropped also, she was going into shock. I went back to the clinic and picked her up and said my goodbyes. She got snippy with the doc there, which is very unlike her. The doctor said they had given her fluids which had probably given her a bit of a rush. But when I stood next to her she tilted her head towards me and I patted her. I picked her up and held her for a few more minutes, one last time.


I sit here now feeling guilty for every time I didn't pay attention to her, for every time I pushed her off my bed during the night, for every time I moved her away from the therapists doing their work with Brady on the floor. I know it's insane; I know she had a good life here and I know we treated her well. But the guilt thoughts overpower and make it hard to see.


I often joked with Michael that I knew Shelby better than him, for she's been with Tom and me for 12-1/2 years. Back in 1994, Tom had wanted to get me a kitten for Christmas, and she was a stray who lived near my friend's condo. I think his daughter nicknamed him Cuddles, which I promptly changed to Shelby, after Julia Robert's character in Steel Magnolias. Ironicly, that Shelby also died in the movie, leaving others to deal with the pain of her death.


Shelby came to us, became an indoor cat and went on to become a very fat cat indeed. Her weight last fall was 14.5 pounds, technically obese for a cat. (That had nothing to do with her illness.) We were often questioned whether or not she was pregnant. She was very affectionate and loved being around people. I often joked that we had a dog not a cat because cats are supposed to be independent and surly. Shelby would always great us at the door and want to sit right with us watching TV. She was patient with Michael and even Brady, who had recently started patting her and grabbing her fur in his tiny fist. We were blessed and lucky and spoiled. She will be missed.

He's not heavy, he's my brother...

There's been a lot of chatter about siblings of our WS children on the blogs. We've all gotten to know Michael, Jamie, Simon ;), Emma, Ella and others through their antics with our families.
Michael is eight and LOVES being a big brother... he would have five more siblings if we let him. As it is, he adopts all the other lil' ones... he kept playing peek-a-boo at the Pinewood Derby with our Den Leader's daughter, who is four. He has a compassion and understanding for little kids and will be a great big brother for Brady as Brady gets older. I don't think he understands right now how different Brady will be --well, neither do we -- but I do think he can handle it. And for being an only child for so long - seven years - we really haven't had any jealousy episodes -- I think he is just very happy Brady is here.
He is always giving him hugs and kisses and wants to hold him. He tells people Brady always wakes him up, but a bulldozer doesn't wake Michael up so I don't know what he's talking about. :)

The brown-haired cutie patootie with Michael is his two-year-old cousin Jack.
(Of course, in the middle of this entry I have to stop and reprimand Michael because he's being obnoxious with his friend and I have to grit my teeth and finish this. Argh!)

As Brady gets older we are noticing he is looking more like Michael... he's even getting his ultra-blonde hair. Michael is the first person Brady smiled at, and Brady is always looking for him when he hears his voice. I think Michael will have a little shadow as Brady grows up.

How cute is this kid!

Here's Mr. Brady Farrell... how cute is he??!?!?!

We've had an interesting few days here. On Friday I brought Brady to the doctor in the afternoon because I was concerned he might have another ear infection. He had a very low temp since the day before and wasn't eating a lot. Brady NEVER gets temps, and although he didn't have one with his last ear infection, I figured it was the day before the weekend and get him in in case it was something bigger.

When we got to the doctor's office, they took his temp and it was 103 degrees. First off the doctor said Roseola (sp?) was going around, which was a fever for a few days then a rash. As she's mentioning this, she pushes down on his right side and he makes a face. After a few more prods and a thorough exam, she looks at me and slowly mentions how rare it is for a baby Brady's age to have appendicitis --she's only seen one in 10 years-- but we both shake our heads and know if anyone is going to break those odds it will be Brady. He's already gunning for the award in "who-can-beat-these-odds".

Before she decided whether to have us drive to Children's Hospital for a MRI, we wait so Brady can do a urine sample to rule out a UTI. Negative. She tries to get a local doctor to do an ultrasound. Already gone. After debating for a few minutes, she lets us go home with her cell phone number in my hand to report back in a few hours and the pedi nurse (Brady's godmother) watching over us. We give Brady some Tylenol and head home where he instantly falls asleep.

I wake him up around 7:45 that night to readminister the Tylenol and try to feed him. Lo and behold, his temp before Tylenol is 100.3 and he eats a solid 2 ounces, babbles a bit even and hangs for a little while before going back to bed. When his nurse calls in, I report what he's done, and she mentions all Brady had to do in order not to go to the hosital, per the doctor's orders. Luckily it was everything Brady had done. Phew! We are good to stay put. He never ended up getting a temp again. I wouldn't have been too suprised if Brady was the second baby in 10 years to have appendicitis. Tom often mentions how this kid needs to gamble a bit because his odds are always on the money.

On Saturday we head in to pick up his glasses. They are made by Fisher Price and called "Teddy Bear" because there are outlines on the frames of very tiny teddy bears. Very cute - and our only choice, too. Brady's opthamologist stated very explicitly that he should not have nose pads, which all the child wire frame glasses had. But these looked adorable, and I was amazed he did not try to pull them off. When we first put them on, he shut his eyes, then opened them and looked all around. He has always been interested in looking around, but now he has a "wow - what is THAT" look on his face. We have noticed he is keeping his head straight, whereas before he always tilted it (to align his eyes to get in focus, the doctor said).

At church this morning he was the center of attention, people smiling his way and others just stopping in their tracks to mention his cuteness. The frames sit low on his nose, too, and the glass makes his eyes look very big. He doesn't seem to complain too much yet, but I know it is the early days and things may change.

While Brady doesn't seem sick --in fact his sleep pattern has gotten better -- he is still not eating very much. I definitely think the Prevacid is working. He sleeps for longer stretches now, and that started the day we started Prevacid. I'm giving him a few more days of this low eating, then I am going into the doctor's. I figure he must have had some bug to have that high temp and maybe he wouldn't want to eat too much if he was sick. But in a few days that should be gone, if it isn't now, and he should be eating well again. I'd hate to think that the good weight gains was just a phase for the past few months and now he's back to not eating as much. Hopefully that will start to rectify itself.

In the meantime, I will just stare at this little cutie... :)