Here is the latest on our family...

Thursday, January 29, 2009

EEG Number 5

Today was Henry's first neurological appointment since leaving the hospital.  After a steady stream of good news over the past couple of weeks, today served as an unwanted reminder that Henry does indeed have a serious brain injury.  

He began this morning with an EEG at Evanston Hospital, followed by a visit with his neurologist.  Although Henry is not exhibiting seizures, during this 90 minute test his brain demonstrated electrographic seizures nearly half of the time.  

The neurologist does not want to continue his phenobarbital, so he is recommending that we move Henry to Keppra.  Keppra is not well-studied in infants, but has been proven to be effective and "safe" in older children.  Our course of action is to begin Henry on Keppra and have another EEG in 2-3 weeks.  If this EEG is improved, we will then stop phenobarb.  Henry would be solely on Keppra, which we would reevaluate after a couple of months.  If Keppra is not effective, we move to plan C.  We're not sure what plan C is just yet.

Henry's head size is not increasing quickly enough, indicating that his brain is not developing properly.  While we were once concerned that his head might be getting too large, we are now concerned that it is too small.  Unfortunately, we can do nothing to assist with this.  We'll just continue stimulating him as much as possible and monitor his head size as one indicator of brain development.  

OK, time for some good news.  After just one week, Henry is taking about half of his daily milk volume via a bottle.  We begin each feeding with the bottle, and when he finally loses interest, we feed him the remainder through his NG tube.  We are all thrilled that he is doing so well.

Last weekend, Henry attended his first organ and brass concert.  Here we are getting ready for the show:



And here are some visitors:









Thursday, January 22, 2009


Today was Henry's video swallow with Dr. Arvedson in Milwaukee.  We spent the last week practicing for this test, so Henry felt fully prepared.  We were well rested after spending the night with our friends Vince and Jen (and Olivia and Cece).  

Henry was a star during the test.  He drank the barium and milk mixture from a spoon as well as from a bottle.  When he initially took the bottle, he performed a series of eight vigorous one-to-one suck-swallow actions that clearly demonstrated that he is both swallowing safely and ready to begin oral feeds.  Dr. Arvedson described the test as "very, very encouraging."  Basically, he is swallowing normally with no evidence of aspiration, and he has the necessary coordination and willingness to feed orally.  

We now start the process of transitioning to oral feeds.  We begin each feeding session with five minutes of bottle (or breast) time.  Whatever he doesn't finish during this session, we feed to him through his NG tube.  When he is able to feed himself for the entire five minutes, we will lengthen that period.  Eventually, he will feed 100% orally, and we will remove the NG tube permanently.  

Dr. Arvedson estimated that this process will take anywhere from four weeks to several months.  Based on his performance today, she estimated that he would initially be comfortable taking 5 - 15 mL of milk.  At his first feeding this afternoon, Henry sucked down 30 mL of milk!  At his second feeding, he took 25 more.  He seems to crave his milk once he gets started, and we have to be careful that he doesn't overwhelm his ability to swallow.  He needs to work on his pacing.  

We also met our in-home speech therapist today.  She was able to watch Henry's first bottle feeding and recommend that we switch to a slow-flow bottle nipple.  We are happy to be working with her.

We began Henry's occupational therapy earlier this week, and his physical therapy starts next week.  All together, we will have three therapists working with Henry in our home each week.  

Our next big test is an EEG and neurology visit next Thursday.  If the EEG shows no seizure activity, we will be able to wean Henry from the phenobarbital.  We remain optimistic that this will be the case. 

Enjoy a video of Henry taking his first bottle:

Here are some other photos from Henry's week:













Friday, January 16, 2009

Change to swallow study

Thanks to a referral from our friend Vince, we were able to schedule a video swallow test with the woman who wrote the book on pediatric swallowing.  She also published an article in Nature that is easier to read than the Google book.  We have canceled our appointment at Evanston hospital and will be headed to Milwaukee Children's Hospital on Thursday.  

In preparation for the test, we have been giving Henry drops of milk on a spoon.  He loves the taste of milk and seems to be swallowing very well.  Starting tomorrow, we'll try a couple of drops of milk from a bottle nipple.  Although these experiments are fun for Henry and us, the real purpose is to ensure that the video swallow test will be as accurate and as brief as possible.  

Yesterday, Henry visited the ophthalmologist.  His right eye is now clear of hemorrhaging, and his left eye is nearly clear.  The spot on his fovea is still dark, but it is lighter than it used to be and so far shows to sign of scarring.  We're hopeful that this trend will continue with our next visit in six weeks.  

At the pediatrician's office today, Henry weighed one ounce less than twelve pounds and was two feet tall.  This puts him in the seventy-second percentile for weight and ninety-second percentile for height.  He received a round of vaccines that made him scream a little.  We are rare parents in that we love to hear our child scream.  

Here are some photos of Henry and guests






And here is a video of Henry taking milk from a spoon:

Monday, January 12, 2009

Another big day

After sleeping until 4 AM, Henry was ready for a big day.  He got one.

Henry met with his original speech pathologist, and she was quite impressed with his progress. Not only is his sucking much improved, but he is now clearly gagging!  She put some drops of water in his mouth, and he was able to swallow them without choking or coughing. The next step towards eating is for him to have a video swallow. We have one scheduled for Wednesday, January 21, at the Evanston Hospital.  Hopefully, we'll soon be on our way to oral feeds!

The CFC program has located three therapists for Henry, and it appears that his sessions will begin next week.  His occupational therapist has 30 years of experience, is a specialist in children with brain injuries, and is certified in sensory integration.  He also has a physical therapist and a speech pathologist who is a feeding specialist.  We have not yet spoken to those two, but they come highly recommended from the evaluation team.  

Later in the afternoon, from a practitioner of Child'Space, we learned some new ways to play with Henry while teaching him about his body.  

Later this week, Henry is headed to the pediatrician and to a follow-up appointment with the opthamologist.  At the latter appointment, we'll be checking up on the healing of the hemorrhage on his left fovea.  

In other good news, our friend Kate is visiting from Montana:



Saturday, January 10, 2009

Moving along

Henry has had an eventful week.  On Friday, he gave us three short, loud baby shouts of "AAAA!"  We have heard these from him on only two other occasions.  This was the first time that we heard multiples.  Now, if we can only figure out what they mean...

We started letting Henry taste milk by dipping our fingers in it and letting him suck while he is feeding.  He loves the taste of milk.  Not only are we glad to be able to give him something that he enjoys, but it also seems to be an indicator that he is ready for oral feeds.  We have a feeding appointment on Monday with the speech pathologist that worked with Henry in the hospital.  We're still waiting for the CFC visits to start.  

Today, Henry was following his squeaky moose toy with his head (not just his eyes) in both directions.  We have to move slowly and restart the process a few times, but we're excited about this new development.  

Also coming up on Monday, we're meeting with a Feldenkrais practitioner to learn some new exercises for building Henry's skeletal support and development of his coordination.  

Here are some pics:







Monday, January 5, 2009


We were concerned that after he pulled another all-nighter, Henry would be too tired to perform for the therapists.  Henry found his second wind, though, and put on quite a show for his visitors.  

This morning's visitors were organized by Child and Family Connections and were simply evaluating Henry to make a recommendation for ongoing therapy.  They recommended weekly visits from a speech pathologist and physical therapist and biweekly visits from an occupational therapist.  The developmental therapist will see him again in six months.   

After watching and manipulating Henry, the therapists concluded that his development is within the normal range for a one-month old baby.  On the downside, his muscle tone is a bit weak, and he has difficulty tracking moving objects with his eyes.  His tone is possibly attributable to his stay in the ICU, and his eye tracking difficulties are most likely due to his nystagmus.  While his tone is something that we can work to improve, we have no choice but to wait for his cerebellum to calm his quivering eyes.

The most interesting part of the visit was the commentary from the speech pathologist.  She was surprised that Evanston Hospital would let such a trivial thing as a gag reflex prevent Henry from eating.  She informed us that many children learn to eat normally without a gag reflex and encouraged us to have a video swallow performed.  Basically, if they can determine that the gag reflex is indeed the only factor preventing Henry from eating, we should be able to put him on a program to get past this difficulty.  

As you can imagine, we are now working to get Henry on oral feeds as soon as possible.  While CFC verifies our insurance and locates our therapists, we will likely wait at least two weeks to see a speech pathologist through this program.  We have contacted a couple of other options to have the swallow study performed sooner.  

And just when we thought our day could not get more interesting...bathtime!  Gramma Judy played a key role in bathtime festivities.  This marked Henry's first bath since his umbilical cord dropped, thus the first time that we could truly douse him with water.  Meade and Judy maintain that he responded with a smile, but I did not witness that myself.  I did witness the aftermath of a tremendous poop which quite soiled his bath water.  From full bath to sponge bath Hank did go.  However, he wasn't quite finished.  No sooner did Meade diaper and clothe him than did he fill his new diaper with more poop.  We had a slight scare as we were changing this diaper, because it appeared that he had quite suddenly broken out in a sweat.  He didn't feel warm, what was happening?  His head and face were soaked!  Then we realized that there was a trail of "sweat" that led from his head down to his newly-removed diaper.  Oh no!  Hank topped off bathtime with a golden shower!  Sponge bath number two was followed by a lightning quick diapering.  

Here are some photos from bathtime:



and playtime:






Some visitors:




Saturday, January 3, 2009

Happy New Year!

2009 is off to a good start.  Henry is still working on his New Year's resolutions, but they will definitely include sleeping through the night and growing.  

At the pediatrician on Friday, Henry weighed 10 lbs 15 oz, putting him in the 70th percentile for weight.  Our next big day is Monday, when we will be visited by a speech pathologist, physical therapist, occupational therapist, developmental therapist, and case coordinator all at the same time.  We are hopeful that this visit will begin our work towards teaching Henry to eat.  

Henry has many adorable outfits.  Here is Henry as a colorful cowboy:


a candy cane:


ready to go out:


and covered in elephants:


Henry makes a face that we call "the choirboy."  We hope you enjoy it as much as we do:



Finally, here are some of the lucky people that got to hold Henry this past week: