Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

Henry’s Helpers

I wanted to include a page to say a HUGE THANK YOU to people who have helped us along the way.  I also wanted to include this page so that if someone is reading this and needs help (and/or feels totally overwhelmed like we did), these are some organizations to look for in your area.

These people and organizations have provided wonderful support in lots of different ways:

Krista M. – Infant Development Program (www.idpofbc.com)

Krista is our IDP consultant and it feels like we’ve known her forever! In reality we met her when Henry was about 1 month old.   She is a staple in our lives, and was super important early on when we were totally overwhelmed and needed someone who could objectively look at what was going on a provide advice, suggestions, and a “balanced” opinion.  Now she helps with note during appointments, suggestions for services or activities as they come up and basically is there when we have questions.  If she doesn’t know the answer, bets are she’ll have an idea of who does!

Marianne Brophy – Lactation Consultant, Family Services of the North Shore (www.familyservices.bc.ca)

Marianne is one of those women who is always there when you need her – seemingly regardless of how busy she is!  She runs a number of groups for pregnant and new moms, plus one-to-one consulting.  When we were first trying to help Henry breastfeed (and after seeing too many people who made promises that shouldn’t have been made), we were referred to Marianne by our doula.  She was great – from the beginning she noticed a lot of different things that were affecting his breastfeeding, from low facial tone, to suck-swallow-breath coordination problems, and more.   She has remained a constant in our lives and we love visiting her!

Andrea G., Amina J., Shannon M. (now on maternity leave), and Hannah – Centre for Ability (www.centreforability.bc.ca)

Andrea is Henry’s physiotherapist, Amina is his Occupational Therapist for feeding and Shannon & Hannah are Speech Language Pathologists.  They all come to the house… usually about once a month (more or less based on how Henry is doing), and provide therapy.  Henry loves having them come over for “playtime”.  It’s great having them come to the house since it’s easier for us (which was really important early on and leaving seemed like a major ordeal) and because this way Henry’s in his home environment.

It was Amina who suggested I blog about my experiences making Henry’s formula… thanks for the advice!

Dr Hadad, pediatrician

We were referred to Dr. Hadad by our midwives after Henry was born.  Visiting him was our 1st outing as a family :).   He tends to be objective, to the point and a “let’s get it done” kind of guy… great for expediting appointments!  He has good advice and actually listens to our questions and concerns.  We don’t usually feel rushed, although he does tend to get behind at times (but what doctor doesn’t?).  And, we can phone before leaving the house to find if they are behind and if we should come later.  The office staff – Agatha & JL – are great!  Friendly, knowledgeable and always follow up when requested.

Dr. Selby, Neurologist, BC Children’s Hospital

Dr. Selby is our 2nd neurologist and she specializes in neuromuscular conditions like Henry’s.  She is lovely!  The words friendly, thorough and gentle come to mind.  And a wealth of information too.  We do have to be sure to ask lots of questions, as we tend to leave our appointments with more questions than we arrived with… often because she gives us so much information that we need time to process it all.  I often wish we could have a follow up appointment a week later, to ask all the questions we thought of the next day!  (but we ask Dr. Hadad and he can usually help out).  Our only challenge with Dr Selby is we don’t always get to see her.  She doesn’t come to a lot of clinic days, so we often see one of the other doctors.  Nice people, but other that asking us about Henry’s history, they don’t know anything about his case, what tests have been done, or what may lay in our future.

Dr. Anita Bratt, Naturopathic Doctor (www.drbratt.com)

Dr Bratt was recommended to us by our pediatrician, Dr Hadad.  When I kept asking about allergy testing and food sensitivities, he said she was the best person to see.  Her speciality is children diagnosed on the autism spectrum, so Henry was a bit of an oddity within her practice.  She immediately put us as ease, totally believed us when we explained why I thought allergies might be involved, and basically respected our role as informed, dedicated, (stubborn) parents!  And the allergy testing proved to be key – providing some very important information in our goal of making a homemade blended formula.

Karen Doolan, Fraser Health Authority

Karen was our Nursing support Services Coordinator and is now helping us with the application process for the At Home Program*.  She is also much more than that… providing wonderful advice, support and “practical” tips!

*when Henry had his ng-tube, we qualified for some at home nursing support through the provincial government.  Along with this support, we automatically qualified for the At Home Program, which covers the cost of various medical supplies, equipment and services.   Now that he has his g-tube, we no longer qualify for nursing support, and are in the process of reapplying for the At Home Program medical benefits (crossing our fingers we are accepted!).

May, 2011: Update – we’re approved for the At Home Program again… yippee!  Thanks Karen!

At Home program information: http://www.mcf.gov.bc.ca/at_home/index.htm

Ali, Dietician, Complex Feeding Team, Gastroenterology Department at BC Children’s Hospital

Ali is the first and only dietician we have met who actually has experience with homemade blended formulas.  Plus, she thinks they’re great… totally supports parents who want to do it (provided that it’s medically appropriate for the specific child, of course), and is working to educate other dieticians on the benefits of homemade formulas.  In short – she’s my hero!

This team is different than the feeding team at Sunny Hill Hospital.  To access their help, you need to be specifically referred to the “Complex Feeding Team” within the GI department.

Other people who have been involved in Henry’s care, on a less frequent basis:

BC Children’s Hospital: (www.bcchildrens.ca)

Dr Aroichane, Opthomologist:  I’m constantly shocked at how they can test his eyes while Henry’s wiggling around so much!

Dr. Seear, Respirologist: a great, “let’s it done” kind of guy.  Not afraid to get involved and help in any way he can.

Dr. Duncan, Cardiology

Dr. Chau, Neurology

Leah P. and Rhonda V, dietitians with the neuromuscular clinic

Sunny Hill Health Centre for Children: http://www.bcchildrens.ca/AboutUs/SHHCC/default.htm

We have received several services through Sunny Hill, including

  • specialized seating for Henry when he’s eating and in his stroller (thanks Sherilyn and Anna!);
  • additional foam support for his car seat;
  • aquatics consult, to help with his physio;
  • post-surgical recovery after he received his g-tube;
  • some initial support for Henry’s homemade formula.

10 responses to “Henry’s Helpers

  1. […] pretend eats, but thinks it’s a game, not for any substantial bodily need.   Working with Amina, our Occupational Therapist, we encourage Henry to explore foods with his hands, body, mouth, […]

  2. […] the Centre for Ability) and Krista (our Infant Development Consultant) at the end of January (click here to learn more about these people).  Shawn & I have been thinking a lot about where we’ve […]

  3. […] are like many other families, we had no input as to which feeding pump we received.  The At Home Program, our funding provider, provides one type of pump option for families – the Entralite Infinity […]

  4. […] finish eating while reading stories, listening to music, or playing.  We didn’t mind… Amina, our Occupational therapist, has always stressed that he need not be  in his chair the whole time… it was actually […]

  5. […] this has also got me thinking, once again, about how lucky we are.  The people who surround us and support us with Henry’s development have each left their own unique mark […]

  6. Taylor More says:

    Hi Shelley!
    I have a little boy named Henry too! He was born October 30 2011 and we spent 3 months in intensive care. In short he has a chromosome deletion that has never been reported in literature. Great! So we don’t know how he will be. He has a g tube, hearing aids, glasses, severe hypotonia, cleft palate ( which is fixed now). All the names on your blog I know too well. I guess I am writing to maybe connect as we live in north vancouver. It’s always nice to talk to other moms.

    • henrysmama says:

      Hi Taylor,
      Thanks for your comment! It’s so nice to hear from other families and yes, it would be lovely to get together. We don’t know many other people locally who have “fun” kids like Henry.

      I can imagine what it must be like for your little one to have something that has never before been written about. When Henry was first seen by Dr Selby in neurology, she hinted that we might never know exactly what he has. At first this scared us so much. But now, looking back, we actually appreciate it. It was Dr Hadad, our pediatrician, who first expressed it in words… by not having a diagnosis we have no preset expectations on what Henry will do. Henry is just Henry… that’s it. He will do what he can, when he ready – and it’s our job to be there to support him.

      I’ll send you an email this weekend and we can chat more!

      Cheers, Shelley

  7. […] Amina, our Occupational Therapist, was so impressed she was almost giddy!  I don’t think I’ve ever seen her so excited.  She was so impressed by how calm and focused he was that she even went so far as to say that he may not need another feeding study.   She watched him swallow for about 2 minutes and was just about bouncing in her seat.  She said that by watching his neck, she can see the power in his swallow; how there doesn’t appear to be any “trickle” (when liquid is left over after the swallow and trickles down the throat uncontrolled), and there was no sign of distress.  To have Amina – the long time proponent of feeding studies – say she thinks he may not need another one… WOW! […]

  8. […] Amina, our OT, has said many times that cold foods may help trigger a swallow.  Apparently the feeling of cold foods in your mouth can help signal to the brain that a swallow is needed.  So, to this avail, we decided to make popsicles! […]

  9. […] only goes up to age 3, so we need to say a very fond, very thankful, very disappointed farewell to Krista – our IDP consultant angel.  I still say – contacting them when Henry was about 1 month old […]

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