June | 2007 | Ben and his Brothers: Life with 4 boys and CdLS

Did You Ever Have One of Those Days?

June 30, 2007 — Karen

Today started off like any other Saturday – after I went to the YMCA, I took one or more of our sons (today I had Jonny and Ben) on our weekly shopping expedition. I went to Target first, reasoning that anything I got there would be non-perishable and therefore would not melt/wilt/spoil in the 85-degree heat. So we went to Target, I got everything I had to, and then went back out to the car, strapped Jonny in his booster and got ready to open the trunk to put my purchases in.

And I couldn’t find my keys!

I checked everywhere – my purse, the diaper bag, Ben’s carseast, my purse again. Nope, still couldn’t find them.

Frustrated, I got Jonny out of the car and went back in the store. Nobody had turned in any keys to customer service. I retraced my steps and called Mark. Unfortunately he and Isaac were doing a little shopping of their own, a good 30 minutes away. He promised to make his way back to meet me at Target. In the meantime, I fed Ben, got Jonny a cookie and some vanilla milk from the Starbucks inside Target, and retraced my steps again. No luck. At one point, Jonny said, “I guess we’ll have to stay at Target forever” in a resigned sort of voice.

Ben needed a diaper, so I went back to the car to grab one from the diaper bag. And that’s when I found the keys – neatly tucked into one of the side pockets that I’d thought were such a great feature when I bought the bag. I was relieved, but I felt like such an idiot. Sheepishly, I called Mark and told him the good news.

Jonny and Ben were such good sports for the entire afternoon, even though our shopping expedition lasted about an hour longer than it should have.

The rest of the afternoon didn’t go too well either – I knocked over a display of porcelain angels at the dollar store (amazingly, none broke), I spilled a carton of raspberries when I got home (I never knew they were so squishy and fragile – never had them before!), and when Mark finally got home, he arrived to find that I’d left the car door ajar, the trunk open, and my purse in the front seat (I was salvaging what was left of my precious raspberries).

I think I should have just stayed in bed today.

Posted in Kids, Life. 4 Comments »

I Love the Dollar Store!

June 26, 2007 — Karen

The older boys went grocery shopping with me on Saturday. In exchange for good behavior, I bribed them with a visit to the dollar store next door to the supermarket. I’m glad we went. Here are some of the cool things we found for little boys:

1. Bug Collecting Sets

These came complete with a container with a built-in magnifier in the lid, tweezers (for the more squeamish among us), and a bug net. Jonny managed to break his immediately by pulling on it while I was trying to get it out of the packaging, but who cares? It was only $1, and it was still savageable with a little scotch tape. We even managed to catch a couple creepy-crawlies that were hiding under one of my flower pots.

2. Squirt Guns

These even had little pop-up water shields. Of course they didn’t actually prevent one from getting wet as Jonny learned:

3. Swim Goggles

Both older boys are in gymnastics camp this week, and have pool time. We bought each of them a pair. Isaac loves his, but so far the goggles haven’t really convinced Jonny to set foot in the pool.

4. A Neat Book about the Earth

My guys like non-fiction. I read part of this as a bedtime story last night. Really.

5. Koosh Balls

I don’t know why they even like these. We had one for Ben which they somehow managed to destroy, so actually Mark bought them some for their very own to wreck.

So if you have small kids, head on over to your local dollar store. You never know what you might find.

Posted in Kids, Shopping. 5 Comments »

Soup and Sandwich

June 23, 2007 — Karen

I’ve had a great week off. It was nice to be able to spend time with Mark and the kids, and be there for Ben’s PT and OT sessions. The weather was very nice for the most part, except that for some reason whenever we had a nice, hot day, it seemed to be followed by a thunderstorm. Jonny has been very worried by this lately, and keeps asking me, “Mommy, is it going to rain today?” He hates thunderstorms.

On Thursday we visited the home of some dear friends of ours. They have a beautiful backyard complete with a swimming pool. Isaac had a wonderful time swimming with his floaties. He enjoyed himself so much that the very next day I signed him up for swim classes at our local YMCA.

We put Ben in the Pack & Play out in the yard for his tube feed, and he was so happy watching the wind blowing the trees and the kids swimming.

Jonny was a little spooked by either the pool or the approaching rainclouds, and couldn’t wait to go back inside. There was a little thunderstorm shortly after these photos were taken, but he never really saw much of it since he was safely tucked away in the basement with the other kids watching a movie.

We’ve had the dinner pictured below twice in the last month or so. I love it because it is (relatively) easy to prepare, not too heavy, and very flavorful. Even my picky older boys will eat it. Click “More” for recipe.

Read the rest of this entry »

Posted in cdls, Cornelia de Lange Syndrome, Family Outings, Food, Kids, Special Needs, Summer vacation. 1 Comment »

Bloodwork

June 20, 2007 — Karen

Today we took Ben to the University Hospital where he gets his specialty care. It’s located about an hour’s drive from our home. Ben had a follow-up visit with his geneticist whom we haven’t seen since his NICU stay. We are trying to enroll Ben in a CdLS clinical research study at CHOP (the Children’s Hospital of Philadelphia), and we needed some information sent there, as well as blood samples from Ben, Mark and myself. The actual visit with Ben’s geneticist was more of a social visit since the actual diagnosing was done more than a year ago. Ben weighed 12 lbs 11 oz.

Getting the blood sample was not at all easy or pleasant. Ben proved to be a very hard stick. We initially took him to the regular hospital outpatient lab. There two different phlebotomists tried a total of 3 times from his left arm with no success. We ended up having to come back a couple of hours later to have the pediatric IV/phlebotomy team try to draw the blood. They tried his right foot and were intially successful, but unfortunately the blood clotted in the syringe and was useless. In the end, after several more attempts, we were only able to get a little bit of blood, and I’m not sure it’s enough for what CHOP needs. Poor Ben was very sad, but he was a trooper and was actually easily consoled and back to his usual cheerful self this evening. Poor little guy. If we don’t have enough blood I’m not sure I can put him through that again.

We also went to the local Bass Pro store. What an impressive place that was! They had a huge fishtank full of giant catfish and trout, and we arrived just in time to see them being fed. We were looking to try out a couple backpack-kid-carriers for Ben, but they suprisingly had very few to choose from. I think we’ll have to order one online.

The older two were surprisingly well-behaved even though we spent hours in a very boring hospital setting. I suppose it helped that we packed their Gameboys.

Posted in cdls, Cornelia de Lange Syndrome, Doctor visits, Family Outings, Special Needs. 5 Comments »

Happy Father’s Day!

June 18, 2007 — Karen

My husband Mark is an amazing guy. We’ve been married for 12 years now, and have been parents for almost 7. When our firstborn son Isaac was only 6 months old, Mark quit his job to be a full time dad. Six and a half years later, Mark’s still a full time dad, with two more young sons, one of whom has special needs. Mark manages to hold down the fort, cook, clean, do various home improvement projects, change diapers, manage tube feeds, coordinate physical and occupational therapy sessions, run to gymastics and soccer practice, and amuse the older two and keep them from killing each other every day. Mark is a wonderful dad, and my best friend, and I am so blessed to be married to him.

We had a busy weekend.

On Saturday we went to one of our local state parks for a birthday party. Isaac splashed in the creek (I had to overcome my natural distaste for murky water and let him have fun with his friends!), and Jonny ate and ate. Isaac found some minnows in the creek. Mark thinks they are tadpoles but I disagree.

After that, we went to the older boys’ end of year gymnastics show. There were three boys in the whole show, and two of them belonged to us! Isaac doesn’t want to do gymastics next year, and I think it’s because there aren’t too many boys in the class. It’s too bad, because he is good at it.

Yesterday was Father’s Day, and also we finally had Ben’s baby dedication at church. Mark had met with our pastor a couple weeks ago to tell him about Ben’s syndrome. I thought Pastor did a good job yesterday. He explained CdLS to the congregation, and did a very nice dedication, acknowledging Ben’s special needs, but pointing out that Ben still has a purpose and a ministry here on earth in spite of his disabilities.

We had a very relaxing Sunday after church, and spent alot of time playing video games, I’m afraid. Today we haven’t really accomplished much of anything either, but I’m planning to take the boys to the local library as soon as I get off the computer.

I love being on vacation!

Posted in cdls, Cornelia de Lange Syndrome, Holidays, Kids, Special Needs. 3 Comments »

On Vacation at Last!

June 16, 2007 — Karen

My, what a busy week this has been! But it’s over now, and I’m on vacation until the 25th, thank goodness. We’re not going anywhere, or doing anything fun, but it is so nice not to have to go to work for awhile. I’ve not really had a vacation since Ben was born, so this is an especially welcome break. Isaac has been off school now for a week, and so far has been having a good time, even though he is already complaining about missing his school friends!

One of Jonny’s birthday presents was a brand new bike. He and Isaac have been very enthusiastic about riding their bikes this week. Since we don’t really have anywhere safe to ride close to home, Mark has been driving them to the local park to practice. I went with them on Wednesday before work. It was a beautiful morning, and Ben slept peacefully in the shade. Hopefully we’ll be able to go often enough that Isaac will be out of training wheels soon.

Ben seems to be having a little bit of an off-week. He hasn’t been too interested in oral feeds at all. His occupational therapist suggested backing off somewhat, and going back to oral stimulation without food for now. It’s a little discouraging, but we know that teaching him to eat by mouth will take time and patience.

I am cat-sitting for the next few days! I love cats, but Mark and Isaac are both terribly allergic to cats, so we can’t have one in our home. Our neighbor asked us to look in on their kitty while they were gone on a trip, and I gladly accepted. Jonny has been helping me take care of her, and I’ve been getting my fill of cat-kisses every day.

Here are Isaac and Jonny early this morning fighting over who gets to hold Ben first. As usual, Ben was very tolerant of their pulling and tugging…

Posted in cdls, Cornelia de Lange Syndrome, Summer vacation, Transitioning to oral feeds, Uncategorized. 5 Comments »

Lost Tooth!

June 11, 2007 — Karen

Isaac lost his very first tooth on Saturday while I was at work. He was thrilled and was all smiles. My little boy is growing up! The tooth fairy had to get a little creative and went to the post office lobby to buy a book of stamps from the vending machine. She was rewarded with golden dollar coins for change. These are perfect for a first lost tooth, she thought. Isaac was duly impressed the next morning, and promptly put them in his piggy bank.

After I got done with work we caught the tail end of Isaac’s end-of-soccer-season party. The boys had a great time playing and kicking soccer balls. Ben was in a great mood, and watched all the kids with great interest.

I wish I didn’t work weekends at all. Thankfully it doesn’t happen very often, and I am actually on vacation all next week! I can’t wait.

Posted in Cornelia de Lange Syndrome, Family Outings, Kids, Soccer. 10 Comments »

School’s Out…

June 9, 2007 — Karen

…and the fun begins! Mark is going to have his hands full with all three boys at home.

Isaac’s end-of-kindergarten concert was on Thursday night. All three boys were dressed up, Auntie Aliyah came with us and we all had a great time. Ben enjoyed the singing and made lots of happy sounds. Even though Isaac was shy all week about “strutting his stuff”, he did just fine and had fun singing and dancing with all his friends. We went out to eat at Fudrucker’s after the concert.

Today Auntie Aliyah is on a plane to Trinidad for summer vacation. I wish I was going too!

The boys woke up deliriously happy today. They had chocolate Lucky Charms for breakfast (I bought them for the first day of summer vacation) and ever since then they have been driving me crazy! Already I am wishing we had a huge yard that I could send them out to run around burn off some of this energy!

It’s going to be a long summer for Mark!

Posted in Family Outings, Kids, School, Summer vacation. 4 Comments »

Happy Birthday Jonny!

June 7, 2007 — Karen

Yesterday Jonny turned four. How time flies! Unfortunately, I forgot to rearrange my work schedule, and things were busier than usual at the office, so I came home rather late. 😦

The older boys didn’t seem to mind too much, and they greeted me enthusiastically at the door. They were so excited. I actually was impressed at how patient they were, waiting until late evening before cake, ice cream, or presents! Mark was making bake and shark for dinner when I arrived. Dinner was delicious – the fish was seasoned nicely, even if some of the bakes were a little charred. 😉

Then we opened presents. The funniest part of the evening was when Isaac gave Jonny his present. He said, “Jonny, I bought this for both of us!” So now the truth comes out!

Then we had cake and ice cream. The cake was a homemade chocolate box cake (I baked it, Aliyah decorated it). Thank goodness Jonny isn’t yet at the age where he wants an expensive store-bought cake! Ben had a little ice cream, really enjoyed it, and gave us some big, runny smilies. 🙂

The only problem with having birthday festivities late on a weeknight is that little boys don’t want to go to bed and leave behind brand-new, just-opened toys! I’ll have to plan better for next year.

Here is a video of Ben playing his toy piano. He has just realized that he can make some really cool sounds with it.

The quality is lousy because I used our still camera to make the video. Our video camera makes mini-DVD’s, and I haven’t figured out how to turn those into something I can post online. Besides, the DVD player on this laptop doesn’t work anymore. Time for a new computer, don’t you think? Mark says we should get a Mac. Any suggestions?

Posted in Birthdays, cdls, Cornelia de Lange Syndrome, Family Celebrations, Kids, Special Needs. 6 Comments »

Early Intervention Review

June 5, 2007 — Karen

Because Ben has a syndrome that causes developmental delays, he gets Early Intervention services that are completely free of charge to us, and are paid for by the state. Each week he has a physical therapist and an occupational therapist come to our home to work with him, and to show us what we should do to help him reach the next step of development.

Today was Ben’s 1 year review/ IFSP meeting. We talked about Ben’s progress so far (slow but steady) and our goals for him for the next 6 months. We’ll be working mostly on the same stuff: sitting independently, rolling, grasping, standing with suport, and of course, eating by mouth! We’ll also have a speech therapist coming to do an evaluation to see if this is the right time to start those services too.

I think Early Intervention is a GREAT program, and we’ve been very happy with Ben’s therapists so far. I grew up in Trinidad with a younger sister who has developmental delays. There wasn’t a similar program in place at the time (I’m not even sure if there is one now), and families of children who had disabilities were left to cope as best they could on their own. That’s why I am so thankful for the EI program that we have. I think it’s made a big difference for Ben and for us.

Posted in cdls, Cornelia de Lange Syndrome, Early Intervention, Special Needs. 9 Comments »

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