Has it really been a month?!?

More like six weeks!  I haven’t posted at all for May – I don’t think I’ve ever missed an entire month since I started this blog.  Since this is my “journal”, I feel obligated to at least mention where some of the last month has gone…

Isaac has just completed second grade.  He has also finished his soccer season with lots of improvement in his soccer skills and attitude (for the most part).  He’s doing GREAT playing the piano, and genuinely enjoys playing.  Everyone but Mark (who was horribly sick with food poisoning) went to hear him play in his spring recital.  Even my dad was here at the time, which was a blessing since he was able to help with Ben during the recital.  Ben and Nate were big fans of  Isaac and his classmates; both enjoyed the music, but were a little loud and had to be escorted to the back of the concert hall!

Tonight we all went to see Jonathan in his kindergarten concert which was so cute and very entertaining.  Jonny turned six on Saturday, and we had a great birthday celebration at home, and one of his friends from school was able to spend the night.  He has come a long way since he started kindergarten – he is reading very well, and his behavior in class is much better than when he first started.  Jonny and I put together a time capsule of his kindergarten year as part of a class assignment, and I really enjoyed doing that with him.

Benjamin is doing great, still has healthy and happy as always. He turned three at the end of April, and we celebrated by going to the beautiful Hershey Gardens for a walk and some photos.  After that, we went out for dinner.  Ben had a great time being out with the family.

We still struggle from time to time with getting him to leave his MIC-KEY button alone, so these days we usually have him in overalls or an ace wrap over his belly.   We’re still working on oral feeds.  For about a month we took a break and didn’t really push the issue at all, partly because I felt it was turing into a power struggle of sorts. We restarted in the last week or two, and there have been good signs of progress.  Ben has actually started opening his mouth for the spoon, has been mouthing toys and objects more, and has been willing to take tastes of foods or drinks that other people are having.  I am cautiously optimistic, and hope that this new curiousity about food continues.  I hope he realizes what he’s been missing out on!

Nathaniel is 10 months old, and growing by leaps and bounds.  We had his baby dedication on Mother’s Day.  He definitely outweighs Ben, and this week he officially has surpassed Ben with his gross motor skills.  He now crawls forward (after a month of crawling backwards and getting stuck in tiny corners), and can now pull to stand.  He is such a social boy and isn’t happy unless someone is either holding him or helping him to stand.  He loves Ben’s therapy sessions and seems to think they’re for him…Mark is constantly having to corral him during therapy.  He now shuns baby food, and loves to eat whatever we’re eating.

Let’s see – what else…

My dad stayed with us for a few weeks in May.  The yard never looked so good, and he helped out immensely with the dishes and the boys.  I’m afraid he spoiled Nate terribly!    My sister Aliyah graduated from college.  The ceremony was outdoors, and we all attended, and then all went out to eat afterwards.

Mark and I celebrated our 14th wedding anniversary at the end of May, and my awesome sister- and brother-in-law watched the kids for us so we could have a rare evening out (we went to a restaurant called “Eleven” in Pittsburgh.  The food was amazing!)  What an awesome gift.

Well, let’s hope I do better with blogging this month.

Ben’s Preschool Evaluation and First IEP

Ben turns 3 at the end of April, so he will be transitioning from home-based early intervention to having his therapies in a preschool setting.  In our county, most kids with significant developmental or behavioral disabilities go to a designated “special needs school”.   I understand that a lot of parents and educators disagree with this approach, but we think it’s the right one for Ben at this time.

Earlier this month (the same week as our vehicular fiasco), he had a formal evaluation at the Center.  He first had his hearing and hearing aids checked briefly by their audiologist.  Ben is difficult to test using behavioral cues, so the audiologist was relieved to learn that he’ll be having a detailed ABR under general anesthesia tomorrow morning.

Then we all went to a different room, and we met all the therapists that Ben would be working with in school, as well as the school psychologist.  The physical therapist went first, and she put Ben down on the mat to watch him roll, crawl, sit up and stand with support.  We were pleased that we’ve already met Ben’s therapist – she filled in for our usual physical therapist a little over a year ago when she was on maternity leave.  Ben did very well.

Then they sat Ben in a little chair and tested how well he was able to manipulate objects with his hands and arms.  Ben sat very well and cooperated with all the tasks.   The school psychologist asked whether we wanted Ben’s IQ tested.  We consented, and she did her evaluation.  Through the entire process everyone asked us lots of questions about Ben’s routine, his likes/dislikes, special abilities, personality, and what our goals were for him.

We generated his IEP for the year, and read over and signed it.  Since the preschool operates year-round, Ben could technically start attending as soon as he turns three, but we all agreed to keep up home-based therapies a little longer; until August.  We asked questions about the preschool itself.  We learned that the classes are typically small (6-8 kids per teacher), kids work individually with the therapists at different times during the school day (or rather half-day), we are able to communicate back and forth with Ben’s teacher and therapists daily using a notebook, and at least once a month, his teacher will do a home visit to meet with us and discuss any concerns.  Ben will be continuing PT, OT (including working on oral feeds), ST, and will periodically meet with teachers for students with visual and hearing impairments.

The prospect of sending Ben to school fills us with anxiety, but at the moment we feel a little reassured after our IEP meeting.   For now it does appear that his educational needs will be met in this setting; we’ll see how things actually work in a few short months.

Feeding Difficulties

Ben has been tube fed since birth, and ever since then, we have been determined that he will one day learn to take most of his feeds by mouth.

Ben, however, has other ideas.

Our dedicated occupational therapist has been helping us to work with Ben for the last 2 1/2 years to get him to make the transition to oral feeds.  Unfortunately, we go through the following cycle over and over again:

1. Ben does reasonably well for a few days,
2. Ben then regresses and absolutely refuses all attempts at oral feeds,
3. We back off for a few days to a few weeks.
4. Repeat.

When Ben was a year old, we took him to a feeding specialist at our favorite tertiary care center.  Of course, he did really well during that session.  Our goal was to get him to eat at least 30 cc by mouth so that we could do a swallow study to make sure he wasn’t aspirating.  Unfortunately, we haven’t been able to get him to that 30 cc goal a year and a half later.

Finally, we visited the feeding specialist again 2 days before Christmas 2008, a year and a half after our initial visit.  We probably shouldn’t have waited this long.  Ben did reasonably well during that session again, the specialist was great, didn’t scold us for not bringing Ben in sooner, and he offered a lot of good, practical advice.  He instructed us to keep feeding attempts short (10 minutes) and consistent, offer very limited interaction during the feed itself, until Ben cooperates by opening his mouth for the spoon.

At that point we are to praise him, and offer him a brief reward (e.g. getting to flip a few pages of one of the board books that he loves so much), remove the reward, and start again.

We came home very hopeful, since Ben had done so well that day.

Unfortunately, we have hit another bump in the road; another period of regression.  Ben has started to open his mouth less and less, and he gets more and more upset with each attempt.  We have gotten to the point where he won’t even take one spoonful in the 10 minutes; he clamps his jaws shut tight, and he shakes his head from side to side.  Our feeding specialist is awesome; he is accessible by email.  I told him the problems we’ve been having, and he suggested offering Ben a single spoonful, holding out until he cooperates, however long that takes, and then rewarding him with praise and removing him from his highchair and letting him play.

Sounds good in theory, but unfortunately we are afraid that Ben can outlast us.   He is a stubborn little guy when he wants to be, and we do have three other kids to attend to.  Worst of all, since we started all this Ben hasn’t been his usual happy giggly self, and that makes me sad.

So I’m not sure what we’re going to do at this point.  I think we’ll pay another visit to the feeding clinic soon and see what strategies they suggest.  If we’re not successful in getting Ben to transition to oral feeds with a home-based program, we may need to enroll him in an intensive feeding program at the feeding clinic which itself isn’t an easy option because it is located an hour away from our home.

Meanwhile, Nate has recently tasted his very first bites of baby cereal.  He made it look so effortless.  Ben was sitting just a few feet away in his highchair, and was completely unimpressed.

Who knew that such a basic thing as eating could be so difficult for some kids.

Benji-Ben Update 11/08

Ben is now two and a half years old.  He is usually a happy, easygoing little guy who loves attention and outings.  He continues to do very well overall, although we are still working through some challenges.

His overall health is excellent!  He is rarely ever sick (knock on wood).  The last two winters he got Synagis shots to ward off the dreaded RSV, but this year he won’t be getting those.  We’ll have to make sure the two big boys wash their hands thoroughly when they get home from school.  Ben still has a tendency to get constipated (it’s one of the few things that makes him truly miserable), but that seems to respond well to a combination of fiber-enriched formula, prune juice and the occasional dose of Miralax.

He is still basically 100% g-tube fed.  He gets 4 bolus feeds during the day, and a continuous overnight feed as well.  Recently, we have been able to increase his daytime boluses, and he has been growing well for a little guy with CdLS.

He still wears hearing aids, and soon we’ll be getting a detailed ABR test for him that will probably be done under sedation.  For now he tolerates the aids well, although every so often we’ll find him holding one.  We just had his eyes checked last week.  Unfortunately, it looks like his nearsightedness has worsened, so we’ll probably be looking into getting him some glasses.  I’m not so sure how he’ll take to those since he resists having things on his face, but it’s worth a try.  We are also supposed to patch his left eye for one hour each day because of his strabismus, but we’ve not been as diligent about that as we should be.  Ben does seem to tolerate the patches much better than he used to.

He seems to become more mobile every day!  He has been rolling for several months, but it has only been in the last month or two that he has realized that he can roll to (or away from!) people or objects.  He has just learned that being on his tummy can be fun.  Who knows?  He might learn to ‘army crawl’ soon.  We practice walking and cruising with him, but he doesn’t seem to quite get it yet.  He enjoys standing at his Exersaucer, but doesn’t seem to quite understand what he is supposed to do in his gait trainer.  He can sit very well, but has a tendency to throw himself backwards when he’s tired of sitting.  He is just learning to catch himself with his left arm when he tips over.

Socially, he is very interested in watching his big brothers run and play.  He is just starting to notice Nate more, and has started imitating some of his baby sounds!

He still gets physical therapy once a week, speech therapy once a week, and occupational therapy twice a week.  We LOVE our therapists.  They all do a great job with Ben, and can usually get him to cooperate with them.  A little over a week ago, we met with everyone to begin planning for Ben’s transition into preschool.  He will likely be attending a local preschool for children with special needs.  He will be having a formal evaluation for that in March of 2009.  I can’t even begin to imagine sending Ben to school in six months!

By far the biggest challenge we still continue to face with Ben has been getting him to transition to oral feeds.  We have been working on this almost since Ben was born, but with seemingly very little real progress.  There have been a few occasions where he’ll do amazingly well (see the photo above), and then the next few days will refuse to eat anything at all, and we’ll have to start all over again almost from scratch. We just went through another episode like that in the last week.

I find this extremely frustrating.  Our occupational therapist is great; she has worked with Ben since he was just a few months old, and we know that a lot of this is a behavioral issue with Ben (he can be quite stubborn when he wants to be!)  She is very gentle and patient with him, but persistent.  And I think that’s what seems to work best with him.

So our journey continues.  It’s not always easy, but all the same, I love being Ben’s mom.

Two Year Well Child Visit

On Thursday we visited Ben’s pediatrician for his regularly scheduled checkup. Everyone but Isaac (who was at school) went along. Jonny was worried at first that Ben was going to have a shot, but was very relieved when we reassured him that Ben was done with shots for a while.

Ben weighs 16 lbs 2 oz, and is 27 inches tall. He has gained exactly 4 lbs over the last year. He is right at the 50th percentile for weight for baby boys with CdLS, and about the 25th for height. Our pediatrician was very pleased with his growth.  I am glad that he doesn’t expect the same rate of growth for Ben that he does for “typical” children.

We talked about development. Ben will always have global developmental delays, but he definitely makes slow but steady progress. He will now grasp and play with objects, roll end over end, and can sit unsupported for several minutes at a time (depending on his mood!) He coos, but doesn’t make a lot of consonant sounds. He has recently started to cry and fuss if one of his toys moves beyond his reach.

We talked about his Early Intervention services: right now he gets Physical therapy once a week, Occupational therapy twice a week (which includes feeding therapy), and Speech therapy twice monthly. We still continue to struggle with oral feeding. Sometimes he does GREAT, and opens his mouth up for the spoon (like he did for me tonight). At other times he resists any attempt to put anything edible in his mouth (like he did for his birthday cupcake). We just continue to work with him daily.

Ben is still virtually 100% tube fed.  Right now he is on mostly Nutren Junior formula, and gets a total of about 700 cc over a 24 hour period.  He seems to tolerate his feeds well, and we are just about to increase the volume of his overnight feeds a bit.  (We are maxxed out on how much he will tolerate in his daytime boluses).

We had a couple of new concerns:

1. Ben needed a letter of medical necessity for a gait trainer of his very own (the one we have now is a loaner). Our pediatrician actually wrote one for us on the spot. Our PT will also write one, and hopefully we’ll get the ball rolling.
2. We’ve noticed that Ben can ‘pop’ his right hip joint just for fun, and it doesn’t seem to hurt him at all. I can’t tell if the joint itself is unstable. Also, when supported, he walks with his feet pointed out, and his PT and OT thinks the external rotation of his feet is coming from his hips. So we’ll be getting X-rays of his hips to investigate.  At some point he may need to see an orthopedist.
3. Ben has been horribly constipated for weeks! We’ve tried Karo syrup with very little success. It turns out, though, that we just started Ben on prune juice late last week, and it seems to work MUCH better than the Karo, so for now we’re holding off starting him on a prescription laxative.

We talked about appointments with other specialists.  There aren’t too many coming up in the near future.  We accidentally missed his appointment with audiology last week (oops!) and that got rescheduled for August.  He has an ophthomology appointment next week.  We haven’t needed to see Ben’s surgeons or the g-tube nurse in over a year.  We will probably make an appointment to touch base with Ben’s geneticist over the summer as well.

So things are going pretty well.  We are fortunate that Ben’s health continues to be very good overall.

Our next appointment for Ben at the pediatrician isn’t for 6 months.  Hopefully we won’t have a reason for him to be seen before then.

I Love My Spoon!

Yes, I know it’s been a long time since I updated this blog, but we’ve been so busy lately.

Ben has been doing GREAT with grasping toys and other objects. He especially loves board books and newspapers. He is a big fan of those full-color advertising fliers that come in the Sunday papers.

Lately, we’ve been doing something new at the dinner table – giving Ben his own spoon to hold with some food on it. He doesn’t seem to be too impressed with baby food these days, so in these photos he’s enjoying some of Mark’s homemade spaghetti sauce (I know, I know, not very reflux-friendly, but Ben’s Nissen fundoplication is still holding up well!)

With a little encouragement he will now bring the spoon to his mouth and lick the spoon. Tonight he had some homemade potato and mushroom soup which he also seemed to enjoy.

Getting Ben to transition to oral feeds has been a lot harder than we ever expected. I’ve found that we have to go at his pace, not ours, although we do have to be consistent and at least attempt oral feeds every day. Hopefully we’ll get there one day.

Popsicles in January

 

Ben has been completely tube fed since birth, first with an NG tube, and then with a g-tube.  For much of his life we have been working on teaching him to eat by mouth.  It’s been slow going for the most part, and Ben will simply NOT be rushed.  Lately, though, we’ve been seeing definite signs of progress.  He’s been much more eager to taste different foods.  His favorite dishes by far have been ANY homemade soups that his Daddy makes! 

Tonight, though, he tried popsicles for the first time…in January!  The response was overwhelmingly positive.

 

The next step is for him to eat enough to make a swallowing study possible.  Only Ben knows when that will happen!

Whatever Works…

 

This week I’ve been off work yet again.  I’ve been enjoying this time with Mark and the kids, even though we haven’t gone anywhere fancy.  In particular, I got to spend a lot more one-on-one time with Ben.  I am realizing just how much of his daily routine I am missing.  He is continuing to progress – he can sit unassisted for about a minute or two at a time now (but still can’t catch himself if he topples over), and here he is shaking a rattle for the first time (we don’t have too many that his tiny little hand can grasp).  He was so proud of himself!

 

Here he is playing with a new spinning toy.  He loves it.  He scooted himself up very close to it so he could play with it with both arms:

 

This week I was able to participate in all Ben’s Early Intervention sessions which is a rare treat.  Mark usually tells me what happens in the sessions, and I read most of the little yellow notes that his therapists provide, but it’s not the same.   For me it is so much better when I can be there in person.

One of Ben’s goals with Occupational Therapy is to eventually eat by mouth.  We have been working on this for a year or more, but hit a roadblock of sorts a few months back when Ben rejected having anything placed in or around his mouth.  His OT, however, is so patient and so good with him.  Slowly, she has persuaded him to start taking small tastes of food by mouth again.  This week, I mentioned to her that Ben seemed to tolerate objects (e.g. toothbrush, washcloth, fingers, etc.) in his mouth during bathtime.   So she suggested bringing his bathtub down to the living room to see if he would be more receptive to eating.   “Whatever works,” she said.  She was very patient with him…and he did great!  

So the first and last photos in this post were taken of our oral feeding session last night…in the bathtub, and with his singing flowers that Auntie Dawn gave him for his birthday (he also loves these, thanks, Auntie Dawn!)  Again he did very well; he did not fuss or gag once, and by the end he was smiling and giggling.  I hope we can get back on track with his oral feeds.

“Whatever works” is going to be my new motto!

PT and OT Updates, and Speech Therapy Evaluation

 

Yesterday Ben had a very busy day. 

He started at 10 am with his weekly physical therapy session.  In PT he works on his gross motor skills – rolling, sitting, and standing.  He used to hate PT when he was younger, but lately it’s been his favorite.  Yesterday was no exception – he was happy and cooperative with his therapist.  He is doing much better with sitting unsupported, but he gets tired quickly and doesn’t catch himself when he tips over…yet.  Here he is practicing standing and holding on to his Exersaucer.

 

At 1 pm he had an OT session.  This one was a little different, because in addition to our regular occupational therapist, we also had a speech therapist and our family service coordinator visiting.  One of the reasons for the visit was to see whether Ben would benefit from starting speech therapy services.

Ben was surprisingly still awake and alert for the afternoon visit.  We showed his OT how well he can grasp toys now, and she was pleased.  She worked on sitting some more, and she is impressed with how much his upper body strength has improved.  The speech therapist brought a brand new mirror toy for Ben to look at which he loved…

She tried to get him to respond to his name, which he didn’t do for her (too interested in the toy perhaps), although he does for us sometimes.  We talked about his hearing loss, whether he tolerates his hearing aids (he does for now), what sounds he makes (mainly “aaaaaaaah” and blowing raspberries) and what our goals for him were. 

I told her that we’d be thrilled if Ben learns to talk someday, but what is more important for us is that he is able to communicate with us, and vice versa.  We talked about using sign language, pictures, and electronic devices.  It turns out that there is a place not too far from here where, when Ben is older, we might be able to borrow one of those devices to see if it would work for him.  We were very encouraged after talking to her, and so we’ll be starting twice monthly speech therapy sessions with her.

We have not been pushing Ben with resuming oral feeds lately because of the negative responses he’s been giving us.  His OT did manage to get him very relaxed on the floor, and was even able to put his spoon in his mouth!  As you can see, he was enjoying this, and fell asleep in the end.  So we will begin re-introducing oral tastes again.  Wish us luck!

Benji-Ben July Update

Ben is now 14 months old, and has been doing well overall.  Now that the older two have not been at school, he hasn’t had so much as a cold recently. 

He is still completely tube fed.  He gets 4 bolus feeds during the day of about 3 ounces each (he doesn’t tolerate larger volumes very well), and is fed continuously overnight as well.  We are still transitioning him from infant formula to Nutren Jr (a pediatric formula), and right now it’s at a 60/40 mix.  Our pediatrician has basically said that we can handle the transition ourselves, since we can tell what Ben will tolerate.  He is definitely gaining weight.  His MIC-KEY button is getting a little snug, and I think we will need to visit the surgeon’s office to have the nurse fit him with a slightly longer button.  We have had no problems with granulation tissue or leakage for months.

The transition to oral feeds has hit a snag – about a month ago, Ben suddenly became very resistant to having ANYTHING in his mouth.  Our occupational therapist advised us to back off for awhile.  She noticed that when we started with him with some infant massage while lying on the floor, he was less resistant to having things put in his mouth.  So that’s what we’ve been doing, and so far we have been seeing some definite signs of progress.  Now he tolerates fingers and small amounts of food in his mouth, but not the spoon yet.  I guess we will have to keep working with him and be patient.

Now that he can roll from side to side and wiggle around, he has been more eager to be on the floor, even during his feeds.  Sometimes we find him all wrapped up in his tubing!  His Nissen is holding up well – he shows no sign of reflux even when he is fed in this position.

If you call him by name and tell him hello, and you wave at him he waves back…with the little right arm!  It’s so cute.  At first I wasn’t sure if he was doing it deliberately, but now I am.  He has discovered that he can reach his feet.  He also does what looks like abdominal crunches.  I guess he really, really wants to sit himself up.  He used to hate physical therapy, but now he LOVES it, because he gets to roll, sit and stand, all the things he wishes he could do for himself.  I know he will, one day.

He still wears hearing aids during the day, unless his parents are remiss and forget to put them in.  So far he hasn’t minded having them in.

He is very entertained by his brothers, and enjoys having them home from school this summer (although he doesn’t look too happy in the photo above).  They enjoy playing with him and bothering him to no end.  They climb into his crib every morning to greet him.  I can’t count the number of times I say, “Leave Ben alone!  Get off him!” in a day, but really I’m glad that they love him so much.  They will do anything to make him laugh.

Ben coos, blows raspberries and smiles a lot.  He has the neatest giggle, and when he’s really happy, he smiles audibly.  He doesn’t cry without a good reason.   And best of all, he still sleeps through the night!  Now there’s a lesson he can teach the older two!