Ponytail

Now that my hair is long enough again, I have been wearing a ponytail a lot lately. No time for a real haircut ( I get my bangs trimmed at Cookie Cutters when Adam goes) and it's just convenient.  I don't think Adam likes it.  He points at it and says "Hair sticking out, Mommy?"  "Well...kind of, Adam." "Ooohhh".

AFP and ultrasound

Adam had his quarterly stuff done on Monday.  He was SOOOO good.  He watched some of "Land Before Time" and ate his lollipop during his ultrasound so it went super fast.  Then he didn't even cry for his arm poke!  He squirmed a tiny bit but I was able to restrain him myself unlike previous times where they had to have someone else hold his arm while I got the rest of him.  We always know before we leave that his ultrasound is clear otherwise the radiologist would come in and talk to us.  We only have been having to wait a couple of days for his AFP results (it used to take weeks when we went through the Geneticist) and it is down to 2.6!!!  Woo Hoo!  When I saw Dave write it down, I thought it was a 26 and I started to panic but there's a decimal point in there.  Only a year and a half left of arm pokes!!

And in case you forget why we have to do all this...
From the screening protocol -

Wilms tumor is the most common cancer in children with BWS, occurring in about 5-7% of all children with BWS. Most children develop Wilms tumor prior to their fourth birthday; however children with BWS can develop Wilms tumor up to 7 or 8 years of age. By 8 years of age 95% of all Wilms tumor have occurred. J Pediatr 1998 Mar; 132 (3 Pt 1): 377-

The second most common cancer in patients with BWS is hepatoblastoma. Similar to Wilms tumor hepatoblastoma can be identified by abdominal ultrasound. However, an abdominal ultrasound does not view the entire liver. Fortunately there is a marker for hepatoblastoma and this is alpha-fetal protein (AFP). AFP is a protein that is made in the liver of unborn infants. At birth the AFP levels are high and gradually decline to adult levels by 10 or 11 months of age. However, most infants with hepatoblastoma do not have a declining AFP measurement, rather their AFP level increases rapidly. 

Hepatoblastoma is also a fast growing cancer and because of the fast growth, we recommend an AFP  measurement every 6 weeks and ultrasound of the liver and kidney every 12 weeks. The ultrasound of the liver can be done at the same time as the ultrasound of kidney. Unlike Wilms tumor, the risk of hepatoblastoma drops off after 4 years, so we would recommend screening with AFP up to 4 years of age. We don’t see any value in conducting a liver ultrasound after four years of age.

As with all screening programs there is a risk benefit ratio that has to be determined by each parent and physician for the child with BWS. Our recommendations to screen with AFP up to age 4 years and ultrasound up to 8 years is based on the observation that most but not all hepatoblastoma and Wilms tumor will occur by these ages. The decision to screen beyond these ages is an individual one, where the benefits must be weighed against the risks. The major risk of screening is a misdiagnosis of cancer resulting in inappropriate surgery. We have had three such incidents. We conducted a cost effective model describing the costs and benefits of screening for cancer in this population;  although not perfect, the model coupled with the data strongly favors screening for Wilms tumor and hepatoblastoma based on the above mentioned data.  Med Pediatr Oncol. 2001 Oct;37(4):349-56. 

Weigh in

Adam decided to weigh himself on the dog scale at the pet store today.... 34.2 lbs....but if you try to pick him up, he feels like 50.  Solid little dude!

The hungry little caterpillar

I think Adam is going through a growth spurt.  After a 2 hour nap yesterday and a big dinner, he slept until 8 this morning!!  Then he wanted to eat all day today.  He ate as much dinner as I did (OK- it was half a little frozen Wolfgang Puck pizza but that was after eating a bunch of apple slices and some graham crackers shortly before that).  He has also seemed a bit more gimpy lately too which is common among the hemi kids during growth spurts. 

He LOVES swimming!  We only have 3 more classes left this session which is good and bad. Bad because he likes it (well, he likes going around the lazy river and jumping off the side of the pool....he doesn't like doing the silly songs as much) and good because we have a crappy teacher.  We had "Joey" the last time we took lessons but after the first 2, another lady came in to teach (who was fantastic) and he was the helper.  He is very soft spoken and we don't do anything different from class to class.   Next week is sign up for summer session and I am torn.  Last summer we got stuck with a teenager who was about as good as "Joey" but at least she talked loud enough.  The adults who have taught the class have added stuff like little relay races, pulling themselves out of the water on the wall, jumping off the wall...just other things other than going around the lazy river a couple of times and singing silly songs.  Do I sign him up again and just deal with it like we have been (Adam kinda does his own thing half the time, otherwise he screams) or wait until he's 3 and can do the next level of classes?(This one is for 18-36 month olds).  

Sleepless in Westerville

Adam has been coming in our room every night for almost the whole week.  I can usually put him back in his bed when he falls asleep but sometimes he wakes right back up and runs back to our room.  I can't sleep when he's there because he tries to put his feet under me or just kicks me the whole time.  This morning I put him back in his bed and I stayed in the other bed in his room but he wanted to sleep in that bed!  He said his bed wasn't soft enough!!  So tonight, Dave got the honors of staying with Adam until he fell asleep but he let him sleep in the full-size bed so that he would go to sleep.   It's not "potty-proofed" so I hope he doesn't have a huge diaper tonight!  I think after we get the carpet fixed in his room, we are going to get him a new frame/headboard for the full-size bed and all the waterproof mattress pads and move him on up. I swear we just bought the toddler bed!

2 Firsts

Adam had his first popsicle today.  I know - two and half years old and never having a popsicle??  We actually bought them last summer and never got around to giving him one.  He thought it was "yummmmy".  It kinda tasted like stick to me.

He also thought he would help me pick up dog poop today.  He usually tries to use the pooper scooper we have but for some reason he actually picked up a piece of poop...in his hand!  Blech!!!

On a different note, he's finally getting his last 2-year molar in!  Hoping this is why he's been such a PITA lately.  He has also learned "one more book" to stall bedtime.

No bugs

Adam and I had such a great day yesterday.  He had his little art class in the morning where he got to do some stamp painting, make a jellyfish, play with homemade play-doh, and do some chalk drawing.  We came home, had some lunch, went to the park, played with play-doh here, and then he played on his play-set here until dinner.  He really loves the glider! I think he sat on that thing for at least 45 minutes!  The rest of the evening went pretty well.

Today he was just a crazy-man!  I think he had one too many jellybeans from going on the potty. He had such a regression in training that we started to resort to bribing again but he doesn't always care.  I guess the good thing is that he always poops on the potty.

We went to a different park today and anytime he saw any kind of bug, he screamed!!  At home, he wanted to sit on his glider again but there were gnats and flies around so he wouldn't get on it.  I thought boys were supposed to like bugs!