Updates on Ben

02/01/02 - There is no point in trying to cover everything that has happened recently since I am several months behind. Between the demands of home, work and the normal holiday madness I have had no time to update this site until now. Ben is doing great and has a full bag of tricks these days. He has mastered rolling and now sits wonderfully. He has great balance but still wants help getting into the sitting position. He continues to amaze us with how quickly he masters things once the time is right. He went from sitting with a lot of support to sitting completely on his own very quickly. Of course the task masters (physical therapists) see the acheivement and immediately focus on the next skill to be learned while we try and celebrate the recent victory. This is actually a good thing because it is helping Ben a lot.

Ben's current goal is mobility - crawling (belly on floor/army style) to be followed by creeping (crawling on hands and knees). This is very hard work for a little boy who doesn't like bending his knees and hips at the same time while on his belly. Of couse like all things Mom gets to do the hard work day in and day out while Dad gets to come home and play with my big boy and do the fun things like bath and story time while taking credit for helping Ben develop the new skills. A great example of this is meal times. Cynthia (and I) have been working on sign language to help Ben communicate while he waits for his fine motor skills to develop. We use a few simple signs while saying specific words like "more", and "up" and he actually has started using them. Of course Cynthia does most of the work but I always seem to be the one who gets the response. We have recently added drink to the signs we use and Ben just tonight started signing drink for me during dinner. This makes Cynthia crazy since Ben didn't do any signing for her during lunch.

Christmas was great though I think we may need to hurry up and finish the basement so Ben will have a place for all of his toys. Yes, Ben did very well in the loot department. He loved the lights and the decorations. Wrapping paper is the absolute best toy ever but the stuff inside the boxes was pretty cool also. We also learned that the three most obscene words in the english language are either "some assembly required" or "batteries not included".

Cynthia and Ben may need a social secretary soon. They have something going on nearly every week day and even some weekends. I may have to start making appointments to see them given the way things are going. Most of this is part of the early access program but Cynthia is now making up for lost time in the baby/mommy social circle as well. Ben has several play dates and the contact with other kids his age has been great for him. He loves to watch the other kids and they seem to inspire him also. His babbling has really taken off recently as he "hangs" with the other kids his age.

Anyway it is getting late and I really REALLY will try to get updates out more often in the future - though this statement is subject to the usual natural law about nature abhoring a vaccum - Ben, Cynthia, and work seem to be quite good at filling my so called free time.

10/13/01 - Wow - I hardly know where to begin it has been such a busy time. Ben came through the surgery pretty well with only some minor complications that kept him in the hospital an extra day (or so). We had the best doctors and nurses taking care of our little boy (and his parents). Ben was in surgery for over 6 hours and we were nervous wrecks since the surgeon doesn't provide updates during the procedure. No complaints on our part since we wanted him focused on the job (fixing Ben) but the waiting was hard. I don't know that there are words to describe how much we appreciated the support of our family and friends during this time and I am positive there are no words in any language to fully capture the feelings we felt when they wheeled Ben past the waiting room on his way to the Pediatric Intensive Care Unit (PICU). Our poor little boy was strapped to a full size hospital gurney and surrounded by Doctors, Nurses, tubes, wires, IV's, and monitors. We were so relieved to see him going by but it was a very intimidating sight and the realization of what he had just been through really hit home. We took turns staying with Ben in the PICU so he would have someone with him around the clock. The Nurses in the PICU were great and set up a cot and agreed to wake us when Ben woke so my dad and I could catch naps while staying with Ben through the night. Cynthia mostly took the day shift with Ben but I don't think any of us slept much or well. Recovery from such a major surgery is not easy and we all had a frustrating time as the doctors tried to decide when it was safe to take Ben off of the ventilator but in the end everything worked out OK since we got to bring our little boy home pretty quickly.

Ben has been doing great since coming home. His sleep schedule was really messed up and we think that he might of been having baby nightmares for the first week or so. Of course he had to hurt quite a bit given all the work they did on him. Heck - I still hurt for my little boy when I see that huge scar on his chest though as he grows it will look smaller. Anyway, he is doing much better now and is back to sleeping through the night (mostly). The first few weeks were scary as we had to monitor his health closely and be very careful about how we handled him. Of course we had a few "first time parent" types of doctors visits during his first week home. Ben was feeling so much better after his surgery that he overate and spit up (a lot). Since vomiting was a symptom they told us to watch out for we ran to Ben's doctor, who, after a quick exam, told us to not let Ben eat so much so fast next time. Luckily for all of us little boys heal very fast compared to adults. At 6 weeks post surgery Ben is considered mostly healed (wow!) and has resumed physical therapy sessions.

We just saw Ben's cardiologist this week and Ben was given a clean bill of health and permission to resume normal activities like visiting grandparents and going out and about in the world with Mom and Dad. There are some precautions we will need to take, probably for the rest of his life, but they are mostly common sense or specific medical concerns. He still has a small murmur but it is very small compared to before. We knew Ben was outgrowing his car seat and some of his clothes but were pleasantly surprised to find out that he weighed 16 pounds and 10 ounces. He managed to gain 2 pounds in 6 weeks while recovering from open heart surgery!

Ben has also been learning to eat solid food during his recovery period. He thinks fruits and carrots are great but isn't so sure about those green vegetables, though they are pretty fun to smear over everything. He has also re-learned all of his skills from before surgery and is working on new tricks like grabbing the toes and reaching for interesting objects. Reaching includes grabbing Mom's sleeve (or hair) while playing or getting a diaper change. His head control is very good these days and we are working on sitting up while balancing with the hands and arms braced on something. "Tummy time" still isn't very popular but he rolls from front to back with great skill and rapidity now. Cynthia is starting to work with Ben on interesting things to do while on the tummy and he may be starting to try crawling (army style - belly on floor).

08/23/01 - Ben is nearly six months old (tomorrow he will be) and mom and dad are nearly exhausted. He is still tall and skinny, weighing in at 14 lbs. 11 oz. and stretching to a towering 27 inches (ok thats really only in the 60th percentile for height but it is better than we expected). He has mastered the art of holding up his head and looking for and following both sounds and objects (especially dad!). All things considered he is doing very well so far.

Ben has been working on some new tricks during the last month. He is just learning to prop himself up with his arms during "tummy time". This may seem simple to the uninitiated but let me assure you this is a major undertaking. It took two (or maybe three) adults and one little boy to get Ben moving in the right direction. Let me explain. You need one (or two) hand(s) to hold his rear end down, one hand to hold the left arm in near the body, one hand to hold the right arm in, and one or two hands to hold up something interesting for a boy to look at/reach for. Now by my count that is about 4 to 6 hands and I know I don't have that many. We have moved beyond this now to where the "adult" role is down to one person who must be entertaining since Ben can now hold himself up (if he wants to).

Ben is also getting more vocal or at least audible. Yesterday he added RASBERRIES to his list of sounds. Thats right a big old THBBBBBBBBRT! He likes this sound a lot and has worked it into many situations in a truly hilarious fashion over the last day and a half. At his six month checkup today he was busy entertaining the doctor and nurses with his new sound. Unfortunately for mom, Ben has also discovered his volume control during the last month and he can really yell when she doesn't immediately respond to his orders. As I said much earlier, I think Ben is doing a great job of training his parents.

Lets see what else has happened since July. Ben has out grown his bassinet and now has to sleep in his own room. I think this was far more traumatic a milestone for mom than for Ben. We took turns the first few nights sleeping on the floor of Ben's room just to be sure that he was ok (actually to convince mom that Ben would be ok). Ben has also started eating cereal once a day. I suggested Frosted Flakes but was vetoed so he gets rice cereal and mom won't even add sugar to it for him. Worse she feeds him cereal for dinner instead of breakfast. Ben's future shrink will have lots of good material to work with.

We are both hopeful and nervous as we get closer to Ben's surgery. The rescheduling of the original date from Aug. 6th to the 29th has been hard on us but Ben's doctors had to work on a much sicker little boy who had been born during the weekend. We know that he will be in the best of hands but it has been hard waiting, worrying and hoping for an extra couple of weeks.

07/19/01 - Well it has been a very hectic few weeks. Work is taking far too much time away from the important things, like playing with my boy and updating this site. Given my time shortage I am sure everyone can guess my priority - playing with Ben!

Ben is doing ok but he is starting to tire out a bit faster and show a few other symptoms of his heart problems. His surgery is still on for Aug. 6 and the doctors want us to really minimize his exposure to germs etc starting now. During the week before the surgery they recommended isolating him as much as possible from others.

Ben has been a little grumpier lately and it is hard to tell if this is due to the heart problem or teething since he really wants to chew on fingers and other handy items. He is a most confusing little boy since sometimes he drops right off to sleep after his bath and other times he seems determined to watch late night TV. He really has problems going to sleep if he gets too tired during the day but he is not a good napper.

Grandma Kaye and Cynthia started on Ben's Winnie the Pooh mural and it looks great so far. Ben seems fascinated with it and I suspect he will appreciate it even more when he figures out who all of the characters are.

07/1/01- Ben is 18 weeks old and a big boy. At his last doctors appointment (6/27) he was 13 pounds and 25.75 inches tall. This makes him a tall skinny boy according to the growth charts. Ben got more shots this time and has been a little out of sorts for the past few days. The doctors have scheduled his surgery for August 6th. Having an actual date is both a relief and a focus for our worries. He will probably stay in the hospital for the full week though one of us (most likely Cynthia) will get to stay with him all of the time after he gets out of the intensive care unit.

Ben is still learning new skills and keeping us on our toes. He can now reach out and grab things (or faces) when he wants to. Ben is also learning to hold his head up. This is a big accomplishment for our little boy. His favorite game is being pulled into a sitting position by mom or dad and then he chases knuckles with his mouth. A good neck workout and a chance to chomp on fingers which seems to be the motivation since he is teething.

We recently started Ben on cloth books and he loves them. He tracks across both pages and has even learned to turn the pages - though not always in the normal direction. It is great watching him with the books since he is obviously studying the pictures and has definite preferences.

06/01/01 - Well its been a busy few weeks since the last time I sat down and pounded out an update. Ben was baptized on Cynthia and my 12th anniversary (05/27/01). He was extraordinarily cute (see the latest pictures) all dressed up in his white "tux". The service was a bit too long for a little boy but he did pretty well. He only fussed a bit after being baptized and being introduced to most of the congregation. Of course there were lots of oohs and aahs for Ben. Ben's baptism was also our Rectors last day at our church and lots of people loved the fact that his last service here was Ben's baptism.

Ben just saw his doctor on Wednesday (the 30th). He is doing GREAT! He has gained 33 ounces in 37 days and is almost exactly the average weight (11 pounds 12 ounces) for his age. Not bad (and unexpected) for a little boy with down syndrome and a heart problem to boot. The kudos all go to Cynthia (and Ben) for this wondrous achievement.

Ben is getting stronger every day and can hold his head all the way up for short periods of time. Cynthia loves Ben's smiles and is determined to get a laugh out of her little boy. Right now he just gives her really big grins and looks like he is laughing to himself. Ben has also started grabbing things much to Cynthia's dismay since one of his favorite things to grab is her hair! He gets good grip on her and doesn't want to let go.

Ben's dad (me) has finally finished painting Ben's room (one color, no artwork). Now we are waiting for the artistic side of the family (Grandma Wheeler) to come help with the important part - painting Winnie the Pooh and the rest of the gang from the 100 acre wood on the walls. After this is done Cynthia will have to let Ben move into his room. He is quickly outgrowing his bassinet but Cynthia doesn't want him sleeping all the way down the hall in his own room yet.

05/20/01 - Hi all, Ben's dad has been working too many hours lately so the updates are coming a little slower. Anyway here is quick update from Ben's mom.

Ben went to his cardiologist a few weeks ago. His heart condition is now considered moderate. It used to be mild. There is more blockage in the pulmonary artery, but his oxygen rate is still good. He hasn't had any blue spells yet. He weighed 10 lb 12 oz. He is gaining weight like a champ!

We had a tough time at the class, so we're back to therapy every other week. Ben is continuing to grow like crazy and has started to wear size 3-6 month clothes. Love to see him in the new clothes, but will miss the old ones.

He is holding his head up much more and starting to hold objects and bring them to his mouth. He grabs at his shirt or holds his hands a lot of the time. If Ben were stronger, we think he'd be crawling. He sure can scoot when he's on his tummy. He is also vocalizing a lot more.

Ben is up to sleeping 7 hours at night. Mom can't stand much longer, yet. We're working on that. He does occasionally decide not to sleep in the daytime. Hard on everyone involved when that happens.

Ben will be baptized on May 27th, our 12th wedding anniversary. It will be a special day for so many reasons.

04/26/01 - Ben saw his pediatrician yesterday and got the long awaited weigh-in. He is now 9 pounds and 11 ounces and he is 23 and 1/4 inches. What a big boy I have. The poor boy got his first shots and is not a happy camper. Cranky and sleepy is a tough combination to pull off but he has it down pat. The doctor is very impressed with his growth and says we can let him sleep through the night now. This means we might be able to stop acting like zombies and rejoin the rest of humanity if Ben continues his previous sleeping pattern. Of course Ben overheard what the doctor said and will probably decide to give up sleeping at night now just to keep us on our toes.

Ben is getting much stronger and can hold his head up with more control and for longer periods of time. He is also doing very well at following objects with his eyes but only when he wants to. Ben and his mother get to go to "school" during May. They will be going to a parent/child group for physical therapy and play sessions.

04/24/01 - Another month older!!!. It is hard to believe that Ben is 2 months old today. It seems like he has been a part of our lives for mere moments and forever. Further proof that you inherit insanity from your kids.

04/13/01 - More good news about Ben!  He went to his cardiologist on Wednesday and weighs ........ 8 lbs and 12 oz!!!!!  Cynthia's (and Ben's) hard work is paying off.  The doctor said to keep on doing whatever it is that we are doing since he is definately "thriving".  This is great news for new parents who aren't always sure which conflicting bit of advice to follow.  Ben's heart is doing OK and his oxygen levels are still in the normal range (97%).  If things continue to go this well the doctor thinks Ben may be scheduled for surgery around August.  The 10 lb goal is a minimum and they prefer larger as long as the heart muscles aren't being hurt.

Tuesday we started working our way through all of the paper work so Ben can start on the early intervention program.  We have the nicest people helping us get settled into all of this stuff.  Ben gets a physical therapist and an educator as part of the early intervention program.  They will be coming to work with him once or twice a month.  Ben got a short session with the physical therapist while we worked through some other stuff on Tuesday.  He has pretty good motor skills for a boy his age and we learned some new things for Ben (and us) to work on.