Archive for September, 2006

A mini update

September 28, 2006

Geeze…tell Ben good news and he has a leap forward developmentally. He’s started doing, like, five new tricks just this week. 🙂 We’re going to the homecoming parade at MSU tomorrow and it should be lots of fun. Kermit the Frog is the grand marshal parade, so of course my sister, my cousin and I can’t stay away. I got Ben a little MSU sweatsuit today so he will be properly outfitted.
On a non baby note, fall is in the air, and it’s been gorgeous outside. With the prediction of frost for tonight, I hustled outside and harvested all our basil, then made a load of pesto for the freezer…cursing myself all the time for not doing this earlier. It’s been a bad year for basil, and I think I put it off because our plants looked so bedraggled and sad. Ben will enjoy squash from grandma’s garden as soon as I can get that made. We’re also enjoying daily walks outside….the weather is fine and Ben likes to ride all snugged up in his stroller with a blanket.
Longer update this weekend, with pictures, I promise. 🙂


Today is my best day

September 22, 2006

So much happened this morning that I know I won’t remember it all, so I’ll probably be adding things over the next couple of days. BUT we have NEWS….BIG NEWS.

We went to Children’s Hospital this morning to see Ben’s cardiologist. The main goal, as we had stated a few entries ago, was to have another ultrasound on Ben’s heart and get him all checked out so we can change his meds (get him off the morphine and get him on something else that will take care of his symptoms but not have bad side effects or be addictive). SO…after much flirting with the ultrasound techs (Ben has a woman in every exam room…I swear…) we talked with Dr. Petterson. It seems that one of Ben’s heart defects, the coarctation (this is the one where his main blood vessel narrowed very severely) is BETTER. It isn’t normal, but the narrowing is much better, it has opened up quite a lot. AND the blood flow through this area is very very good! So it isn’t all NORMAL…but it is very good, very improved, and very functional. Check off thing one. 🙂

Thing two: the other two defects ARE still there, they have not healed. BUT. Because the coarctation is better, the other two defects are actually something that Ben can live with. I stress live with, because the biggest news is that there is now the expectation that Ben will live for several YEARS!!!!!! I don’t think this has sunk into me yet…YEARS. My Ben will be here for years. Ben is going to be ____ years old. Ben is going to live.

Ben’s condition has been upgraded to chronic. This means that he will have a chronic heart condition for his entire life. There are several possibilities and things we may or may not see in the coming months. Right now he does breathe hard, and that might continue, it might not. Basically two things are happening: he has a lot more blood than normal flowing into his lungs because the two main vessels coming off the top of his heart are fused. AND the oxygenated and non oxygenated blood in his heart is mixing. Both of these may be causing his heavy/fast breathing. We are going to put him on Lasix, which will help clear some of the fluid (swelling) around his lungs. This will help the blood flow around his lungs, and may help his breathing decrease. OR he may just be a heavy breather because his respiration is due to his heart and not his lungs.

I’m getting everything mixed up…because it is so much to take in. What you need to know is that we now have a little boy who has a chronic heart condition that he will live with. The saturation of oxygen in his blood will always be a little lower, he will tire easily, and he will breathe heavily. But he will live, he will grow, he will go to school, he will continue to be strong and happy. His outlook is great. We don’t know how many years, but do any of us? Nothing is ever garunteed, and as Scott and I have said all along…we brought Ben home to live with him. That’s what we’re doing.

A couple more things. Because a coarctation (narrowing) of the aorta is usually treated with surgery immediately, it is rare to have one go untreated like Ben’s did, so they had very little clue that one would widen like this. Whether this is a product of Ben’s specific anatomy or something that would always happen, who knows. It just happened! Also, there is an article being published on Ben in a medical journal. I think we are going to get a copy of it, it should be out in the spring. Also, that little duct that was supposed to close after Ben was born and DIDN’T, which is why we thought he was still here? Well, it couldn’t be found today…so maybe it closed after all!

Sometimes doing nothing but loving is the best thing. Even the doctor said that we really did make the right choice, to take Ben home, love him, and see what happened. Ben’s body proved that it had it’s own agenda, and that the human body really is an amazing and humbling machine. We do not have any idea how flexible and how strong we really are. Scott and I never doubted our choice, but I know that it is scary to go without medical intervention. It worked for us to make this decision, and we are so grateful that things have turned out so well.

There is so much information we got today, and all of it was good. I cannot believe and would never have hoped that we would be at this point, but here we are. Ben is so strong, he is so amazing, and he is blowing all expectations out of the water. Stay tuned for more. 🙂

Ever wonder what Ben looks like without hair?

September 19, 2006

I thought it was interesting to see him with this hat…it looks like he’s bald underneath. When we took the hat off, the hair was EXTRA special. 🙂 Ben is all dolled up in his fall gear ready for a walk….or a trip to the library, which is where we were headed. 🙂

check it out!

What a day, what a day!

September 16, 2006

We had the best time at the buddy walk!

This is just a quick update to let you know that as of today, our team raised $2,450.00!!!! THANK YOU to everyone who donated. Donations are being accepted via our page through the end of october, so it’s never to late.

THANK YOU also to everyone who came out and walked with us! We had such a huge team, it was amazing to see all our friends there. Hope you all had a good time!

There are pictures below, but if you want to see all the pictures we took, you can go to our flickr page:

A few pictures from the walk:

Oh, wow. Just Wow!

September 15, 2006

I just wanted to let you all know that to date, we have raised $1,730.00 for our walk. I dreamed we would raise $1,500.00….you are all incredible. Thank you so much. If you’ve been thinking of giving, there is still plenty of time! Even though the walk is tomorrow, you can donate for the next couple of weeks. But as they say in Public Radio, why wait?

I heard a figure the other day that 95% of the operating budget for PCDS (our local Down’s support group) comes from this walk. What do they do? They have a new member’s dinner in just a couple of weeks to connect familes who are new to the world of Down Syndrome. They have a christmas party. They send out HUGE support packets to new familes, make contact with these families personally. They send members to national conferences and bring back information that will help us here in Michigan. They care, they show us what life is like when living with a child with Down Syndrome, and that life is sweet.

This past week I had the pleasure of meeting a woman who has a 45-year old daughter with Down Syndrome. She was telling me how different things were 45 years ago for a couple in a hospital that gave birth to a child with Downs…her doctor really pushed for institutionalization. Today her daughter lives independantly in a group home setting. She travels, holds a job, has many friends, and a very rich life.

I know that you have all heard this before from me, but I really am passionate about this. Events in our lives make us aware of what is important, and this is so important. Taking care of our children, all our children, and teaching them to be independant, to challenge themselves, to be compassionate, and to be accepting of others who may look different is so important. Thank you all again for all of your support…ALL support. Thank you for supporting our walk and for supporting our life with Ben. We really really appreciate it.

Buddy Walk Mania!

September 13, 2006

Hi everyone…
No pictures today, I’m just posting a quick update and Ben is “helping” in my lap, so sorry for any typos in advance. 🙂 We are sooo excited about the buddy walk on saturday…friends old and new are coming, family is coming, the weather forcast says it is going to be beautiful, and we can’t wait. Remember that if you still want to walk in the Buddy Walk, you don’t need to fundraise, all you need to do is show up and register. You can register onsite for only ten dollars (which goes to help support Parents of Children with Down Syndrome). Remember to tell them you’re walking with Ben’s Bunch! After the walk (a measely one mile) there is a picnic and fun for all. See you there!

I want to take a minute to thank the family of Betty Campbell. Betty was a friend of Ben that we never had the chance to meet, and sadly she passed away this week. Her family has requested donations in her name generously be given to support our walk. We will be walking in her memory as well as in support of Ben this weekend. Godspeed.

Talking with Betty’s family this week made me think again about how many people have been touched by Ben’s story. I know and I am aware every day of how Ben has changed my life, but I so easily forget how he is changing and touching the lives of others. To me he is my amazing little boy who loves to talk, laugh and eat (boy does he love to eat!) To so many other people he is an inspiration. I am in awe of how many people his life has touched, and I am speechless.

A short update about BenFun

September 8, 2006

New updates on Ben! Walled Lake Schools called last week and we have set a schedule for Ben’s Physical Therapy. We start next monday and will start going every monday morning for the next couple of months. I’m excited to hear what they think about how he’s doing, because I think he’s made so much progress this summer. It will be fun to see him get some new physical input. After watching him at dinner tonight, I am pretty convinced that he has the STRENGTH to roll over, but not the coordination. He really wants to move, but he doesn’t understand how to make that happen. Today when he was playing with his friend across the street he lifted his butt and tucked his knees underneath him…thinking it would propel him forward, probably. It’s so neat to watch. He has also started turning in his crib…we’ll go in to get him in the morning, and he’s 180 degrees from where he was the night before. He’s scooting around little by little. Time for rolling! Another neat thing that he is doing now: he is soooo much more aware of his world. He follows the cat across the room, and no matter where he is he wants to know where Scott and I are…he cranes his neck around to find mom and dad. Ben is definately a “take it all in” kid….he interacts with his toys and with people, but he really doesn’t want to miss anything that is going on anywhere, and has to be able to see everything. It’s fascinating to watch!

Also big health updates on Ben. He got his first round of immunizations this week. He really really didn’t like getting held down to get a shot…but who does? Ben cried when he got them, then slept for a night and a day…but did pretty well all things considered. We took him at night so that Scott could meet the doctor too. The Pediatrician had already talked to Ben’s cardiologist and hospice, so he knew a little of Ben’s history. We go back in six weeks to follow up and have the next round of shots.

For the past couple of months, Ben has been on morphine. This is to help dialate his blood vessels and so his heart can work more efficiently at pumping blood, mostly because of the issue his body has that mixes all of his oxygenated and nonoxygenated blood together. The problem with this medication, even though he is on a very very low dose (lower than the minimum dose for his weight) is that he has major problems pooping on it. There’s just no delicate way to put that, because it’s a major issue. SO…this has gotten to be a bigger deal since we have started solid foods (although eating prunes for breakfast seems to help!). We have spoken (though Email) with Ben’s cardiologist about changing this, weaning him off the morphine, and observing to see if his symptoms are still stable or if there is another medication that can alleviate the symptoms with out the addictive and intestinal problems that morphine has. Originally he was on this, also, because we were basically making Ben comfortable, thinking that he really just needed comfort care because he really wouldn’t be here that long. The dose was to be as needed….and then he needed it, but he has been here much longer than planned. SO….long and short….Ben is due for another trip to the cardiologist to see what’s up with his heart and to adjust his medication. Not sure when the appointment is yet, but we’ll make it next monday and then look forward to the date. 🙂 We Randall’s love us a trip to the cardiologist.

Some people have asked if some kind of record will be taken and recorded about Ben, since he’s one of a kind…and I asked the Cardiologist this. He is planning on writing a paper on Ben’s case and including some pictures of Ben’s heart. I think that this is very neat…but I also hope that there is not another family that ever has to make use of this information. Who knows what will happen, though.

I think that is all for now.

There are some new pictures here…

It’s been such a long time!

September 1, 2006

**Small announcement before the actual Journal Post: We made our fundraising goal! We surpassed $1,000 and we would like to THANK everyone who donated. Your donations make such a huge difference. 🙂 THIS DOESN’T MEAN WE’RE DONE! We still have two weeks until the buddy walk, so there is still plenty of time to donate if you haven’t. will take you to a safe, secure donation site. AFter all, goals are nice, but learning you can surpass your goals is so much better….take it from Ben. 🙂 ***

Yes, it’s been a long time since I’ve posted a real update, and I guess we have been pretty busy around here. First things first, we did have a party for Ben’s sixth birthday (six months, that is), and it was fabulous. We were worried about the rain (we had the party two weeks ago…and what they predicted was a 30% chance of rain turned into 100% chance by the time the day arrived) … we just set up some tables in our garage and everything worked out fine. Ben had a great time playing with the “big kids” who came to his party, and the day was fun fun fun. We’ll see everyone again in six months for a one year celebration.

Ben continues to be loving his solid food. To date we have tried sweet potatoes (thumbs up), peas (thumbs up), pears (thumbs up) and bananas (thumbs down…probably too thick). Scott and I are also learning a few things about what Ben likes and what he does not like. After a few days of mixing his food too thick and Ben just refusing to eat it, I made it a little thinner again, and all is well. When he’s eating, he has developed the habit of wiping his mouth off with his bib, then throwing his hands around while opening his mouth wide as if to say “MOM! BITE! NOW!” He also talks a lot when he eats, and yes, blows cereal raspberries. He loves his food. 🙂 We continue to offer him water from a cup, which he LOVES…he has his own little plastic cups and likes frequent drinks while eating. I know that he might master a sippy cup faster, but I kind of want him to be able to handle a real cup before we take the easy route of using the sippy. Yes, a lot of the water still fails to make it in his mouth, but he’s having a good time and one day he’ll figure it all out. 🙂

Ben is growing like a weed, too…this week he weighed 13.7 lbs. Last week when he was measured he was 27.5 inches long. This means that at 6 months, he almost doesn’t fit into six month clothes, not because of his weight, but because of his length! The solution? I bought him sleepers without feet so that he can stick out of them and wear them a little longer. 🙂 Ben has this strange obsession with getting dressed…he thinks taking clothes on and off his the funniest thing ever…and always gets this big dorky smile on his face when we dress or undress him. Very cute.

School started this week, and it does feel strange to be home, although I’m still enjoying it. I’ve found some activities that we will be doing (classes at the library), as well as some things to do on my own once a week (I’m going back to band!) to keep my sanity. Ben has playdates with his little friend across the street who is a week younger (pictures in a couple days!) and loves that. The big news is that after labor day we have an appointment with the pediatrician for a physical and the first round of immunizations! Even Ben’s cardiologist suggested it was time to start thinking more in terms of a long term care model…so we’re going to get him checked out. He will remain on hospice, with visits once a week, but we think its time to make contact with the ped. and start shots, since we take Ben out and about so much. That should be an adventure!

Labor day weekend will be a quiet at home for the most part, Scott has a three day weekend and we’re all looking forward to the relaxation. Sunday will be a party at Rick and Karens (fun fun!)…Ben will be bringing his Jammies because we plan on being out past his bedtime. It’s great to have friends that you know you can bring your kids and all the accoutrements that go with them…just because you know you are staying awhile. 🙂 Last year at this time I was working all weekend (literally…Scott was out of town and I worked on school plans like crazy). I don’t remember a Labor Day I wasn’t using to catch up for the start of school, so I’m looking forward to some family time. Enjoy your weekend everyone!

a few pictures