Snippets…

On Saturday, Isaac scored his very first goal since he started playing in the AYSO Under-10 division!   He really has been making a good effort, even though it has not been easy for him.  We were so proud, and so was he!

On Tuesday the weather finally cooperated and Jonathan actually got to play soccer!  He was so excited since his last two games were rained out.  He did great, had a blast, and scored a few goals.  When someone asked him if his team won, he replied, “There’s no winner.”  I’m glad that he enjoys the game at this stage without needing to keep score.  And we were thrilled that he was able to burn off some of that extra energy.

Ben has had a few trips to our friendly tertiary care center.  He has been picking and pulling at his MIC-KEY button, so last week we saw his g-tube nurse.  We have determined that the tube size is appropriate, but we think he has a mild yeast infection at the site.  We are treating him with some Mycolog ointment, but I’m not so sure it’s doing much good…he succeeded at PULLING OUT HIS MIC-KEY BUTTON for the very first time a couple days ago.  For now we’re continuing the ointment and keeping his belly bound with an ACE wrap.  Poor Ben.  I hope he stops messing with it so he doesn’t have to sweat all summer.

Today we went to  have Ben’s hearing aids adjusted.  He got new molds, and I told the tech about the severe feedback (whistling) we were getting.  She had a neat device which actually was able to cancel most of the feedback (I’m not exactly sure how it works), but Ben will finally be able to wear his hearing aids again.

Lately, Nate has been doing lots of new things.  He has begun teething, rolling over very well in both directions (finally catching up to big brother Ben with his motor skills), trying to crawl on hands and knees and really wants to learn how to pull to stand.  He has been learning how to feed himself and has been scarfing down those little Gerber fruit puffs like lightning.  But he has also been sooo needy these days and cries if you just stand up…before you even have a chance to leave the room!  He really loves Ben and enjoys playing with Ben’s face, hair, arms, feet, etc.  Ben usually tries to roll out of the way, but this week he really seems to be noticing Nate and interacting directly with him for the first time.

BTW, Mark found these neat shirts for the little boys at Toys ‘R’ Us to help everyone see that they are not twins.

Ben turns three tomorrow, and Nate is 9 months old.  Right now Nate officially outweighs Ben.

I suppose it won’t be long before they won’t seem like twins anymore.

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!

Warm Winter Clothes

Two weekends ago, while we were in Pittsburgh, we had a chance to leave our two older sons with their aunt, uncle and cousins.  We were therefore able to take Ben to a REAL mall to get some new clothes for the fall and winter without hearing “I’m bored!” and “Can you buy me a video game?” every five minutes.  Ben actually fell asleep halfway through, and didn’t care what I tried on him.

I don’t usually care much about clothes, but both Mark and I feel that we should try to dress Ben as nicely as possible.  It isn’t always easy.  We have a couple of issues:

1. Ben has a MIC-KEY button for feeding, and so each article of clothing should allow easy access to his abdomen.  That means it either has to have snaps all the way down, or it needs to be a two-piece outfit, and the shirt can’t be a onesie that snaps at the crotch.
2. Ben has a congenital malformation of the right arm (which the CdLS Foundation diplomatically refers to as a “limb difference”, and should not be confused with a “deformation“).  He isn’t able to extend the right elbow at all, and the entire right arm is much shorter than the left.
3. In general, boy clothes aren’t as cute as girl clothes.

The first issue is relatively easy to address, although it can be challenging to find non-onesie shirts for kids under a 24 month size.  (Ben is currently in 3-6 mo or 6-9 mo clothes, depending on the manufacturer).  We found lots of  front-snap sleepers for bedtime, and we did manage to find quite a few nice two-piece outfits.

The second issue has proved to be a lot more difficult to manage.  We have tried rolling up the long sleeve on the right arm, but it gets bulky and uncomfortable for Ben, and he isn’t able to move the entire arm well at all.  What we really need is a short sleeve on the right arm, except for sweaters and outerwear.  

So, some of the shirts that we bought Ben will need to be altered (by someone other than me!  We’ll probably have to take them to a seamstress).

We got lucky with these shirts.  The sleeves are in two parts, so we can alter them ourselves with some pinking shears:

Here’s how we do it:

I think we did a good job of resolving the third issue.  We got the clothes from Target, Baby Gap, Gymboree and Kohl’s.  Of course, Mark did buy one outfit for Ben (when I wasn’t even around) which disregarded just about everything I’ve just written about here!

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!

Hearing Aid and MIC-KEY Checkup

 

Today Ben had 3 medical follow up visits which made for a very long day.  All Ben’s specialists are located at the university hospital about an hour away from our home.  We left home around 10:30 am.  Jonny came with us.

The first visit was with the audiologist.  The bad news: according to Ben’s last ABR, he had some significant worsening in his hearing overall.  The good news: his hearing loss seems to have a significant conductive component to it which might be related to middle-ear fluid, or his very tiny ear canals.  This means that his hearing might very well improve as he gets older and bigger.  The audiologist did make his hearing aids a little stronger for now, but maybe this is going to be just a temporary adjustment.  The important thing is that he can hear us talking to him, and he does tolerate his hearing aids very well for now.

The second visit was with the otolarngologist (ENT specialist).  Again, she was unable to even see far enough into his tiny ear canals to see his eardrums.  She did clean out some earwax, which Ben didn’t appreciate very much!  She said we’ll have to adopt a wait-and-see approach since his structures are so tiny.  She wouldn’t even be able to put in ear tubes if they were needed at this point.

The third visit was to see the G-tube nurse again about the granulation tissue we’ve been fighting around Ben’s MIC-KEY site.  She reassured us that it didn’t look all that bad.  She gave me some tips on using the silver nitrate, and said we could also use some hydrocortisone or triamcinolone (steroid) cream to keep the tissue in check.  Ben seems to mind the cream less than the silver nitrate, so we’ll see how that works.  She did cauterize the tissue that was there with the silver nitrate to demonstrate her technique, and Ben didn’ t like that one bit!  He weighed in at a hefty 10 lbs 15.2 oz at this last visit.

Jonny was a good boy considering how long we were in a boring place.  He was very protective of Ben, and didn’t like when Ben had uncomfortable procedures done to him.

Isaac went to some friends’ house after school and had a great time.  We got home after 5 pm.  Thank heaven for leftovers in the fridge!

Preschool Christmas Party and MIC-KEY Checkup

Jonny’s Christmas program at his preschool was last night.  He actually wasn’t clingy and willingly went backstage with his classmates!  When he spotted us in the audience he turned around, pointed and loudly proclaimed to his friends, “That’s my baby brother, Benjamin!”  He sang most of the songs.  He also got to be a reindeer.  The herd of reindeer wasn’t moving across the stage until they spotted a plate of cookies on the other side – then they took off!

Today was his Christmas party complete with Santa Claus.  He told Santa he wanted a statue for Christmas – whatever that means!  The kids exchanged gifts, ate sweets and generally had a good time.

We left directly from Jonny’s preschool party and took Ben to have a checkup for his MIC-KEY tube at the surgeon’s office with the nurse practitioner.  In contrast to the last time we were there, we didn’t have to wait at all.  At first the nurse was skeptical – she had just increased the tube size 6 weeks ago – but after she examined Ben she agreed that he did seem to have outgrown it already.  She therefore put in a longer tube (which seems to be the perfect fit for the time being), and cauterized some granulation tissue with silver nitrate.  Ben did NOT appreciate that at all, and Jonny felt very sorry for him.

Isaac was at school when all this was going on.  He was in extended care at school for only about 30 minutes, and he didn’t mind this time since one of his friends was there too.

Poor Ben is a little fussy tonight – he has had 2 difficult days in a row.  Hopefully his MIC will stop leaking and he’ll forget about the last 2 days, and will have a good first Christmas.

Pump Malfunction

During the day we use a syringe pump for Ben’s bolus feeds; he gets around 65 cc over 45 mins.  It’s just easier that way since he gets a relatively small volume at a time.  At night, however, he has a continuous feed of about 10 oz that runs over 8 hours.  For the nighttime feeds we use a Zevex Enteralite pump which we love: 

 

Tonight, however, we set up the pump and guess what?  For the first time since we had the pump we got an error message.  The pump just won’t work at all, no matter how many times we turn it off and on again.  We called the medical supply company, and there’s not much they can do tonight, but they will come first thing in the morning and bring us a new pump.  So that means that tonight we will have to do bolus feeds every 3 hours!  😦  It’s a good thing I’m off work tomorrow.

Here’s Mark downstairs right now giving Ben his first installment of tonight’s feeds:

Leaky MIC-KEY

Over the last week we’ve been noticing more leakage around Ben’s MIC-KEY (G-tube) site.  The skin around it is also red and irritated-looking, and has a “yeasty” appearance to it.  Mark called the surgery office and they have called in some Nystatin cream (an antifungal) for him.  We’ll see how that goes.  We’ve started using gauze to try to absorb some of the leakage, especially overnight.

Mark has been able to run Ben’s feeds in over 47 mins instead of the usual 60 mins today!  We will try increasing both the rate and the amount of tonight’s feed as well. 

Isaac has an ear infection, but he seems to be feeling better and I only just picked up the antibiotic tonight.  I therefore didn’t start him on it.  Hopefully I am not exercising bad judgement and he won’t wake up screaming in pain in the middle of the night.  Jonny fell asleep at 6:30 pm after a late night last night and an early morning today.  Mark is telling me to leave him be.  That’s OK as long as he knows that if Jonny wakes up at 2 am wanting to play, he’s the one who’s getting up with him!  😉