Hi everyone,

The past few weeks have gone by fast and we’ve got a lot to update.  The biggest change for Maddie has been with her eating by mouth.

Maddie was about to turn one prior to discharge from rehab, so the nutritionist suggested switching from infant formula (Similac) to Pediasure formula to ensure proper nutrition.  The Pediasure formula she switched to had all the nutrients necessary for a complete and balanced diet and was especially made for g-tube feedings.  Prior to switching, the nutritionist asked Jen if Maddie would like the vanilla, berry or chocolate.  Jen was surprised those were the only options and asked, “Is there a plain non-flavored one………?”  We’re those parents where Abby only had water and milk for the first few years of her life.  Although not an issue at that point because all of Maddie’s liquids were being given through the g-tube, Jen cringed at the thought of Maddie tasting something so sweet at such a young age.  Unfortunately, the nutritionist said that those were the only flavors, so Jen chose vanilla.  In the back of her mind, she was already thinking about ways to avoid giving Maddie the Pediasure by mouth.  Jen’s grand plan was to increase Maddie’s purees to a point where she was getting enough nutrition through that and could just drink whole milk (instead of Pediasure) by mouth.  The main concern is that Pediasure has a higher calorie count compared to whole milk.

At discharge, Maddie was being fed 16 oz of Pediasure through her g-tube and eating two 1 oz feedings of purees by mouth per day.  Her swallowing wasn’t coordinated enough at that point to be able to drink liquids.  However, as of last week, she was up to three 3-4-oz feedings of purees per day.  Jen was feeding her a variety of things (yogurt, oatmeal, meat, grains, fruits, veggies) to see if she could just drink whole milk instead of Pediasure.  Maddie was also able to drink 2 oz of milk at a time.  We felt like she was able to drink more, but Jen was scared to substitute too much of the milk for Pediasure due to the reason mentioned above.  And unfortunately, the nutritionist at the GI doctor wasn’t willing to provide advice until they saw Maddie for the first time, but she finally had her appointment last week!

At the appointment, Maddie’s height to weight ratio was in the 90 percentile range (should be closer to 50%), so we were cleared to start exclusively on whole milk and continue with the purees.  After the doctors visit, she easily drank 4 oz of milk with minimal trouble!  She is also now starting to figure out when it’s time for feedings.  She’ll open her mouth and vocalize a little bit – almost like she’s saying: “What’s taking you so long?”  In the past week, Jen has also started giving Maddie more textures in her purees with a little bit of soft pasta and more lumps in her fruits.  She seems to be enjoying the new textures!  With Maddie now taking almost everything (except for water) orally, we’re relying less on the G-tube, but it is very comforting to have as a back up.

We are officially booked for PT, OT, and Speech sessions at Inova hospital.  We are so grateful that it worked out this way since she will be seeing many of the same therapists who saw her over the past 6 months in the PICU and recovery rooms.  They have a better idea of her baseline and history and it goes a long way to making Maddie more comfortable and for the sessions to be more productive.  Just look at her showing off her neck control at the PT evaluation this past Monday:

Maddie’s neck control is much better with less stiffness on the right side.  She’s also able to roll onto her stomach and even back again!  She still favors her left side in terms of motion and her right side in terms of laying/sleeping.  Her overall body control is also getting better and we can hold her more upright as opposed to cradling her to support her head.  It’s not obvious that she has any problems when she’s laying down or sleeping in a stroller – we bumped into many admiring shoppers at Wal-Mart when we took her out last week and she just looked like a chubby 1 yr old.  Below you can see she looks like a normal baby trying to sleep while being aggressively loved by her sister:

We moved Abby to a new preschool near our house this past week and Jen was very nervous about the switch.  When Abby first started daycare 2 years ago, drop off was very hard for her every day for a couple weeks.  Praise the Lord that she transitioned effortlessly this week to her new class!  Bill’s commute has been cut in half and Jen can pick up Abby earlier so that we can have meals together as a family again.

Families from our church have continued to deliver food to us and it has truly been a blessing.  We cannot thank everyone enough for the wonderful food and gracious support.  The love is overwhelming and Bill says you can taste it in the food, which is why he’s eating so much of it.

We ask for your continued prayers as Maddie’s recovery continues.  She’s made some good progress, but the process will be a marathon.  Please ask God to watch over our family and give us wisdom and faith each day to do what’s best for Maddie according to His plans.  We don’t know the future, but we trust that God’s got it all figured out and is preparing a path for us, even now.

Thanks everyone for your support and we’ll update more soon.