tag:blogger.com,1999:blog-11384715208433500482012-01-23T17:06:37.308-08:00Beals Syndrome is a genetic condition characterized by contractures of the joints, long arms, legs, toes, and fingers, as well as other traits. This blog is the story of our family's adventures with Beals Syndrome.Mrs. CPnoreply@blogger.comBlogger341100tag:blogger.com,1999:blog-1138471520843350048.post-38325178510347600742011-12-15T05:21:00.000-08:002011-12-15T05:21:02.056-08:00

I stopped journaling during Aaron's 3rd year and so the next (and last) entry I have is from March of 2010, when Aaron was 4 years old.  Here's what I wrote at that time: Age 4:Ack!  I stopped journaling.  Whoops!  I am blaming Baby #4!  HA!  Well, let’s see.  Aaron is now 4 years old.  He is very tall… only about an inch or so shorter than Asher.  Not sure how many inches that is though, but

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-73338973706286556642011-12-14T05:15:00.000-08:002011-12-14T05:15:34.515-08:00

Snippets from my journal during Aaron's second half of his 2 yr. old year. 31 months: Aaron had his follow-up echo and he looks really good! He doesn't even need to have antibiotics for a dental appointment now. And we don't have to return for 2 years.  Yay! <!--[if gte mso 9]> <![endif]--><!--[if gte mso 9]> 0 false 18 pt 18 pt 0 0 false false false

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-48061260043356371592011-12-13T13:02:00.000-08:002011-12-13T13:10:50.230-08:00

Snippets from my journal entries covering Aaron's first 6 months as a 2 yr. old. 28 months: Aaron is learning to walk faster and faster.  He's also pretty good at walking backwards.  Two weeks ago he figured out how to get into a standing position all on his own without pulling up on anything.  He can do it, but still often heads to a piece of furniture and pulls to a stand anyway. 29 months:

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-8733325716920231752010-07-24T18:50:00.001-07:002010-07-24T19:19:06.676-07:00

Snippets from my journal entries about Aaron from ages 22 to 24 months of age:22 monthsAaron has officially taken a total of 7 independent steps! Not all at the same time - they were spread out over the past week - but very exciting nonetheless. If he keeps this up, he will surely be moving much faster than I have been lately*.*I was in the first trimester of my pregnancy with Aiden! Picture

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-61047705168043970342010-07-24T12:47:00.000-07:002010-07-26T12:26:17.467-07:00

Snippets from my journal entries when Aaron was 19 to 21 months of age: 19 months Aaron weighed 30 pounds 12 ounces at his weight check this week. So he's lost about a half a pound. It is very good news that we have stopped the weight gain snowball. Even if he maintains his current weight, it will still help. The skim milk seems to be making the biggest difference. Visiting the nutritionist was

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-88430598306277932622010-02-08T12:16:00.000-08:002010-02-08T14:06:19.949-08:00

Below are snippets from my journal for Aaron when he was between 16 and 18 months old. 16 months Earlier this week we visited a geneticist for Aaron. First we saw a genetic counselor who took our family history and asked us lots of questions and then we saw the geneticist (and the counselor guy) for over an hour. I was relieved that the geneticist took his time with us and didn't rush us. He has

Mrs. CPnoreply@blogger.com8tag:blogger.com,1999:blog-1138471520843350048.post-5136307634591815732010-02-08T11:40:00.000-08:002010-02-08T13:58:14.014-08:00

Below are abbreviated journal entries I wrote when Aaron was between the ages of 12 and 15 months. 12 months This morning I was holding Aaron in a standing position (with support from me under his arms) and he supported most of his body weight on his legs for about a minute. A minute!! That was by far the longest time he's ever done that. Normally we'd get 10 to 30 seconds maybe on a good day. I

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-73205064626210650242009-09-03T19:39:00.000-07:002009-09-03T19:41:12.387-07:00

That last post has some font wackiness and space wackiness going on and it won't let me click to enlarge a couple of photos... and it is just giving me a headache. I'm not that skilled with my html coding to figure it out. So sorry about that. Hopefully the next post will go a bit more smoothly.

Mrs. CPnoreply@blogger.com1tag:blogger.com,1999:blog-1138471520843350048.post-63056421706643413292009-09-03T18:28:00.000-07:002009-09-03T19:39:27.652-07:00

Here are abbreviated journal entries from the second half of Aaron's first year of life:6 monthsSo about that visit to the cardiologist. We didn't get the chest x-ray done because their computer system messed up and we ran out of time, but we did get the echo done and see the doctor. His heart is still the same as it was 6 months ago. He still has a tiny VSD and still has mild aortic

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-55573693303347780242009-09-01T09:47:00.000-07:002009-09-01T11:50:37.503-07:00

What follows are journal entries that I wrote during Aaron's first six months of life. I'm trimming these entries to focus primarily on the aspects of his development that were related to Beals Syndrome. (Click on the photos to enlarge.)10 days oldToday was our official due date, but instead Aaron is already 10 days old! We got the results of the echo and they said he has a moderately large VSD,

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-4827992078589095542009-09-01T09:03:00.000-07:002009-09-01T11:21:34.689-07:00

When I was in labor with Aaron, we arrived at the hospital around midnight. I was 6 to 7cm dilated and the baby was at 0 station and I was about 75% effaced. Since I wasn't having regular contractions, I didn't know if I was in labor or not. The nurse said that my doctor probably wouldn't want me to go home since I was so far dilated. Instead she said he would want me to stay until morning

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-18880940991024278032009-07-28T18:16:00.000-07:002009-07-28T18:49:35.153-07:00

I'll be sharing about Aaron's story next, but for now here is a little preview...Aaron is 3.5 years old. He is our 2nd born son. Aaron is a shy, sweet and sensitive little boy. He has a tender, quiet heart. He is slow to warm up to new people, but once you've earned his trust he gives of his love deeply. He can also be a very goofy, funny little boy who loves to laugh and especially loves to

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-90637045453489502412009-07-05T17:57:00.000-07:002009-07-05T18:56:55.603-07:00

After we had Ada, we gave birth to a beautiful baby boy, "Asher" who was born without Beals Syndrome.  Asher is a joyful, affectionate, hilarious 5 yr. old little boy.  Asher cracks us up with the things he says and does.  We always say if you need a hug, go find Asher - he'll be happy to oblige!  One physical trait he shares with his siblings, despite not inheriting Beals Syndrome, is that he

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-84628449306347792812009-07-05T12:27:00.000-07:002009-07-05T12:50:13.832-07:00

I don't have any journal entries from Ada's 7th year that pertain to her Beals Syndrome, but I can tell you that over the past year Ada has continued to develop her gross motor skills.  She can now make it about halfway across the monkey bars at the playground (about 3, maybe 4 rungs) which is new for her.  She still isn't as coordinated as her peers, but she can participate in any activity.In

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-13421919131776292382009-07-05T12:05:00.000-07:002009-07-05T12:50:46.755-07:00

I have but one entry from Ada's 6th year that relates to her physical development. Mostly I wrote about other areas of her development such as learning to read and her interests and hobbies.But here is the entry from her 5 yr. old checkup:5 yearsI took Ada in for her 5 yr. well-baby checkup on Friday. Well-baby. Hmm, I guess I can't call it that anymore. Big-girl checkup. She weighed in -- with

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-15092011919191228262009-06-20T18:12:00.000-07:002009-06-20T18:39:03.630-07:00

There isn't much to report that is Beals related from Ada's fifth year, but here is one of my favorite memories from that year...4 years, 3 monthsA couple of weeks ago we had a thunderstorm roll through. The sky turned an unusual shade of yellow. I think it was because the sun was setting and the cloud coverage wasn't that thick, so the sky turned yellowy. We were all in the living room when Ada

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-89691551533190965042009-06-20T17:42:00.000-07:002009-06-20T18:10:09.907-07:00

Thoughts from my journal entries during Ada's 4th year of life:3 years, 3 monthsShe weighs 30 pounds now and is about 37 inches tall. She had her follow-up appointment from her heart catheterization procedure this week and her heart is all better! The procedure worked perfectly and it will never be an issue for her again! So that was great news. The chest x-ray she had done didn't show any

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-50436508753368192292009-05-07T18:15:00.001-07:002009-05-07T19:02:18.316-07:00

Snippets from my journal entries during Ada's third year:24 monthsAt her 2 yr. checkup she weighed 24.1 pounds and was 35 inches tall. That's the 20th percentile and 85th percentile, respectively. The doctor was impressed with how Ada knew her numbers, shapes and colors and said she'd be bored in kindergarten! We need to schedule her next echocardiogram soon so we can have her VSD checked out

Mrs. CPnoreply@blogger.com1tag:blogger.com,1999:blog-1138471520843350048.post-47685669756916640492009-04-23T09:04:00.000-07:002009-04-23T10:45:02.787-07:00

Here are snippets from my journal entries during Ada's second year.12 monthsI discovered that she is curling up her toes when I put her shoes on. After about an hour of wearing shoes with her toes all curled up, her feet get quite painful and she gets VERY upset. It took me two times of this happening before I figured out what was going on. When I took her shoes off, she screamed in pain and

Mrs. CPnoreply@blogger.com2tag:blogger.com,1999:blog-1138471520843350048.post-72820206418771710662009-04-21T18:52:00.000-07:002009-04-21T20:08:22.225-07:00

Here are abbreviated journal entries from the second half of Ada's first year of life (remember I've changed the names to our blog nicknames...) Also, I've added photos to my previous entry so if you missed them be sure to scroll down.6 monthsYesterday Ada said Mama for the first time! I was around the corner so she didn't say it to me, but I was within earshot. She has said "ma" a lot in the

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-68801000741197828542009-04-16T19:14:00.000-07:002009-04-21T19:52:27.839-07:00

What follows are journal entries that I wrote during Ada's first six months of life. I'm trimming these entries to focus primarily on the aspects of her development that were related to Beals Syndrome.8 weeksAda is 2 months old today!She has rolled from her side to her back, and has tried to roll from her back to her side, but didn’t quite make it.She doesn't grab objects that much because of

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-18525564905655801162009-04-15T18:51:00.000-07:002009-04-15T19:27:15.559-07:00

I was 40 weeks and 2 days pregnant. I was 4cm dilated and was expecting to get up early the next morning to arrive at the hospital to have my doctor break my water and get this baby outta my belly and into my arms! We were ready!Ada decided to take matters into own hands, however, and get a jump start - literally - on our well-laid out plans. At 10pm in the evening, Abe was giving me a back

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-67655926661184080342009-04-15T18:21:00.000-07:002009-04-15T18:51:34.694-07:00

I became pregnant with Ada in the fall of 2001. My first trimester was accompanied by some morning sickness and a lot of fatigue but everything went smoothly. We visited my in-laws for the Christmas holidays and I remember my MIL asking me if we'd like to look over Abe's baby book and such. Sure. So she came back a minute later with a STACK of papers. We started looking through them. As we

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-54088412472560049892009-04-14T09:49:00.000-07:002009-04-14T09:54:19.483-07:00

I will be catching up on my blog here asap! I really want this to be a real-time blog as soon as possible and I have a lot of history to cover to get to today!Next up I will be detailing our daughter's birth, infancy, and development these past (almost 7) years. Then I will move on to Aaron's story. His story is much more involved than the others and I really want to document it all. Then

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-9285388779193376812009-03-10T12:18:00.000-07:002009-03-10T12:39:42.716-07:00

I will be sharing Ada's story next. But for now here is a little preview...Ada is 6.5 years old. She is our only daughter. She is a sweetheart of a child... and extremely bright. She is already reading at a 6-7th grade reading level. She is a very thoughtful child who loves to shower those she loves with gifts... homemade cards, coloring books, paintings, and a variety of other little things

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-8453121058031968592009-03-10T11:38:00.000-07:002009-03-10T12:10:49.730-07:00

Better late than never, right? So here are photos of Abe growing up I've been promising...This is Abe at age 4 months. Notice his crumpled ear and his long, tapering fingers. You can't see them, but his thumbs are still contracted at this age and tucked into his palms. This was Abe's first Christmas morning.This is Abe sitting in the backyard at age 11 months. Chubby baby boy. Long fingers.

Mrs. CPnoreply@blogger.com2tag:blogger.com,1999:blog-1138471520843350048.post-28857032377939531492008-11-06T09:21:00.000-08:002008-11-06T09:24:06.106-08:00

I have sorted through family photos and selected the ones I would like to share on this blog of Abe growing up. However, since he grew up long before the age of digital photography I must tediously scan each photo in so I can share them here. I will get around to doing this. Soon. I figure a picture is worth a thousand words when you're discussing a syndrome that manifests itself in a

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-47312144053571774422008-09-25T09:01:00.000-07:002008-11-11T16:08:25.998-08:00

The next medical report we have is 5 years later, when Abe was age 10. He was seen by the pediatric cardiologist for a follow-up. The cardiologist wrote, "[Abe] has remained totally asymptomatic from a cardiac point of view since I last saw him...[9 years earlier]"He also said, "There has been no exercise intolerance, exertional dyspnea, palpitations, chest pain, dizzy spells or syncope. As a

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-42304742180675454362008-08-30T17:00:00.000-07:002008-08-30T17:01:13.261-07:00

Oops, I forgot about myself in my nickname post. For the purposes of this blog and in keeping with the "A Team" theme here, I'll go by the nickname Anne.

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-48333990292808575572008-08-03T07:45:00.001-07:002008-08-31T13:58:22.919-07:00

Fast forwarding several years, Abe is now 5 years old. It's the late 70s.Abe was seen again by the same doctor who wrote the first report we have at 16 months old. She works in physical medicine and rehabilitation.Here are direct quotes from her report:- He is quite tall, does well in school and is still being followed at [...] for a physical therapy program.- [Abe] can play soccer, manages to

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-7283054386176892992008-08-03T07:27:00.000-07:002008-08-03T08:46:40.215-07:00

Our next medical report for Abe is at age 18 months. This one is written by a pediatric cardiologist. A heart murmur had been been detected, prompting the visit. Among the doctor's notes are the following:Abe weighed 26 pounds 11 ounces.He had no cyanosis (bluish skin color) or clubbing present.His head was large and his fontenelle still open.Blood pressure was normal.Fingers were long and "

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-84776011079956931192008-07-22T07:44:00.000-07:002008-11-11T16:05:45.230-08:00

So I'll start from the beginning of our Beal's saga, which began with my husband.Abe was born in the early 1970s (putting him in his mid-30s today). He is the youngest child of his family and the only one with Beals Syndrome.His mom had an uneventful, though nauseating, pregnancy. She remembers getting a nasty virus around the 3rd month and claims this is what caused the Beals Syndrome. I have

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-51294364688314258452008-07-20T06:49:00.001-07:002008-08-31T13:57:39.618-07:00

I've been trying to come up with some clever nicknames for my family members for the purposes of this blog.So for our daughter, I'll call her Ada. It is a Nigerian name that means "first daughter."For our first son, I'll call him Asher. It is a Hebrew name that means "happy." Happy is the first word I think of when think of my son (you may not hear much about him simply because he doesn't have

Mrs. CPnoreply@blogger.com0tag:blogger.com,1999:blog-1138471520843350048.post-78911053773857313682008-07-15T12:08:00.000-07:002008-07-22T09:29:00.548-07:00

It's a baby blog! A clever double meaning -- a baby blog because it is a brand new blog and a baby blog because it is pretty much about my babies! :-)I've decided to start this blog to capture the story of my family's adventures with Beals Syndrome. I am also hoping that other folks and families who have Beals Syndrome may do an online search for "Beals Syndrome" and stumble upon this blog,

Mrs. CPnoreply@blogger.com3