2.28

{Gabe & friends helping momma make dinner}

Renucci Hospitality House

While Gabe was hospitalized in September and October '10 our family was blessed to be able to stay close to him in the Renucci Hospitality House. Although it wasn't easy, and it wasn't home, the staff and volunteers there did everything they could to help us to feel comfortable and cared for.  Several church and community groups would bring in meals for the guests of the house at least once each week.  During our stay Kevin and I thought often about what we might do someday to give back to this philanthropic effort, which we hope to continue to do in the years to come. 

If you are interested in a unique way to give to others who are dealing with a sick or premature baby (and live in or near Grand Rapids, MI) perhaps you would like to consider donating items from the list below directly to the Renucci House.  This list has been prepared by those working directly with the families.

Urgent Needs:

Supermarket gift cards (Meijer, Family Fare, Wal-Mart)

Cereal

Liquid laundry soap (Tide, Arm & Hammer or Dreft)

Fruit juices (orange, apple, grape, etc.)

Canned Kool-Aid, punch or lemonade mixes

Fresh fruit (oranges, apples, grapes, etc.)

Cascade Automatic Dishwasher Detergent

Various Items:

Combs and brushes

Shampoo (sample size)

Magazine subscriptions

$5.00 taxi vouchers

Restaurant gift certificates (restaurants within walking distance are ideal)

Supermarket gift cards

Foil, plastic wrap and baggies

Pens/pencils/small note pads

Non-stick frying pans

Toothbrushes

Food Pantry Items:

Snack bars/granola bars/cookies

Baked goods “for immediate use”

Chips, crackers

If you have questions about items listed on the Wish List or other ways to help support the Renucci Hospitality House, please feel free to contact Kirk Bart at (616) 391-1787.

"You're Original, Cannot Be Replaced"

Something about these children singing Katy Perry's song - awesome!
Own it, baby Gabe.

Fox 17 Covers the CLC on National Conductive Learning Day

 

National Conductive Education Awareness Day

One piece of the therapy plan that Kevin and I have pursued for Gabe's early months is conductive learning. He attends the Conductive Learning Center in Grand Rapids, MI for one on one therapy appointments. The conductor, Andrea, works with us to teach developmentally appropriate activities for working the muscle groups that are not functioning "normally" for Gabe. Between appointments it is our responsibility to be sure he gets many opportunities to practice these movements, ideally in 20 minute increments 3-4x a day. Note: ideally. It has been difficult for me to get over the guilt of it, but with three other small kiddos it is not always realistic to devote this consistent time. I am committed to at least twice a day though.

Today (in addition to being Gabe's sweet aunt Amy's birthday!) is National Conductive Education Awareness Day.  The CLC celebrated with an open house.  Although we were not able to attend, I enjoyed reading the news article reporting the success of the event and the encouraging stories of students who benefit from the program.  Check it out if you are interested in learning more!

Baby Steps

Gabe has had his AFOs (ankle-foot orthoses) for about a month, however he wore them for the first time last night (hangs head sheepishly...).  Having these made is a bit like watching an artist work on a masterpiece.  The mess of the plaster, the cutting, the molding, the pushing, the cutting.  Then trying them on, adding more, cutting more, trying them on again.  It is quite an involved process, but we have complete confidence in the able hands who created these. I am certain they are the perfect fit for Gabe's chubby little legs. 

The purpose of this pair is to hold his ankle in a 20 degree flex in an attempt to keep the motion he currently has for pointing and flexing his toes.  I wasn't sure that I agreed completely with this prescription, nor was I overly excited to brace Gabe's feet which have good active motion.  However, we've agreed to try them for 6-8 hours each day while he is sleeping.   

Well, so far we've tried them for 30 mintues.  It's a start...right?!

2.23

{just happy to be here}

Home Again

We are so happy to have our family together again.  Gabe was extra enthralled by the noise, the play, and the giggles going on around him today after his week of minimal sibling stimulation.  Never mind he might be having a tad bit of trouble getting used to sharing momma's attention again.  Anyway, we are thankful that Gabe is feeling better, and we are unexplainably thankful for all of the prayers and encouragement that got us through a long week away.

2.21

{5 Months Today}

What THE What?

I think we are trapped! Mr. Gabe is much more himself. His lungs are clear today and his oxygen has been discontinued. He's playing happily between naps and eating well (I thought!) when he wakes. He is suffering from a nasty diaper rash, but that is typical for him when he is on antibiotics and wearing disposable diapers for an extended period of time. We were quite certain he'd be cleared for take off as soon as we saw the Dr. today.

The doctor stopped in briefly this AM and was encouraging about Gabe's progress and rather casually suggested he'd like to see him eat 2-3 more times before he left. Here we are four hours later and he just popped back in to check on Gabe's feedings. It would not be normal for him at home to eat 2-3 more times in that short period! Plus, he's a honkin' 21 lb. four month old. He doesn't need to eat that often. Anyway, he has decided that his feedings are not "impressive" enough and he needs to stay until he is eating more. In addition he wants him back on IV fluids.  The bummer of that is they had already taken out his IV lock and now they are putting in a new one.  Here we go again...

What the WHAT???

2.19

{Somebunny to cheer you up}

2.18

{mom, when can we go home?}

2.17

{still}

In the News

Did you catch this on the news last week? This report gives a peek at the MOMS study we were invited to participate in after we learned of Gabe's diagnosis in utero.

Visit msnbc.com for breaking news, world news, and news about the economy

While the results are positive, we still feel confident about the decisions we made not to participate in this study based on our family situation, the randomization, and the information we were presented with at the time. However, I am anxiously looking forward to following the stories of children who were able to benefit from the in utero study.  I also appreciate the attention that this study has, and will, bring to the issues Gabe will face throughout his life because of Spina Bifida.

If you are a scientifically minded, or maybe a bit geeky like me, you may enjoy reading the abstract.

2.16

Not The Plan for Tonight

When he woke up yesterday our sweet babe seemed healthy and happy.
Today he started out with a nasty nose. 
Tonight he will be sleeping in the hospital. 

Unfortunately, it appears that he has RSV (which to an older child would be no thang).  For a young baby it presents itself with very labored breathing requiring oxygen until the gunk passes.  They have also discovered an infected ear and what appears to be viral pneumonia. Poor buddy!

While it was not the kind of quiet I was hoping for this evening, it is very quiet.  So, I'm going to make the best of it by enjoying some one-on-one snuggle time with my baby boy.

2.15

Post Valentine's Day let down or the return of his stinkin' cold, Gabe is extra sleepy and stuffy this morning.

2.14

{Happy 1st Valentine's Day}

Because of Love

Because it's February.

 

Because I just decorated my house in pink and red hearts.

 

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.

 

Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.

The "can't stop starring at you" kind of love.

The "I'm always there for you" kind of love.

The "I can't keep myself from smiling around you" kind of love.

The "I promise to make time to laugh with you" kind of love.

The "everything you say is so important to me" kind of love.

The " I couldn't be prouder of you in this moment" kind of love.

The love that lifts you up....

Squeezes you tight...

Makes even hard times feel alright..

The love that teaches you all that you need to know...

And gives you support you need to grow...

The undeniable you were made for me...

And together we make a family...

What's mine is yours...

I treasure each kiss...

And everyone deserves to feel like this...

Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

reposted with permission from Joanna

2.13

This morning, while the big kids were off at Gram's house, we dug out a family favorite baby accessory.  I'm not sure the "Johnny Jumper" will be the safest way to have fun when Gibson is around to spin and swing it, but Gabe enjoyed trying out his leg strength with it for awhile today.

2.12

We have been meeting with the same group of amazing couples monthly for the past 8 years. When we started we were all newly weds, with only dreams about our children to come.  Now we collectively have 12 special little ones. Gabe is the youngest addition to our group (at least for a couple more days) and snoozed quietly in his car seat last night through our rowdy adult discussion.

2.11

{bright eyes}