11 mos and 1 month!

Today is a big day for us-- Madeleine is eleven months old and she's been home for one month without a hospital admission. This is twice as long as she's ever been home before and we're ecstatic.

I do have some pictures and a video to post but of course that stuff is at home-- I'll try to post ittonight. In addition to highlighting the big events for today, I also wanted to provide an update from last Friday's doctor appointments. Madeleine had two more appointments on Friday and also had some blood lab work completed. The two doctor's visits were extremely informative as we met with Dr. Bloom from complex care and also met with Dr. Rosenberg in the Genetics/Down Syndrome clinic at Children's. We've been working with Dr. Bloom for quite some time and she's helped us immensely in gathering and synthesizing information from all of Madeleine's doctors. Her specialty is "complex care" and she essentially looks at Madeleine holistically and helps guide her medical path going forward. Madeleine knows her pretty well and despite being extremely tired and over stimulated on Friday, she had a good smile for Dr. Bloom. Dr. Bloom was impressed with Madeleine's growth and she showed us some different growth charts showing that while Madeleine is still small, she's rapidly catching up with the "normal" growth chart. In fact, she's in the 5% growth range for female babies with Down Syndrome. This is the first time Madeleine's ever been in a "normal" weight range and we were pretty glad to see the progress. Assuming Madeleine can keep this growth rate up for a few more months, she should continue to make up ground.

We discussed Madeleine's medical plan for the next 3-6 months and we came up with the following:
1) Sustained growth is still the most important factor. She just needs to stay healthy and to keep on chunking up.

2) In a few months, we will consider options for feeding. The NJ feeding tube isn't a long term option and we will likely consider inserting a feeding tube directly to Madeleine's stomach or intestines. It sounds bad but its more convenient than feeding via the nasal tube. Additionally, if the doctors think it safe to allow food in Madeleine's stomach-- everything now goes directly into the intestines-- we can "bolus" feed Madeleine meaning that she doesn't have to be connected to a feeding pump all of the time. We'll likely go through a battery of tests in a few months that will help determine the best path moving forward. In the long term, all of Madeleine's doctors think that she'll eat normally. However, this is likely months and possibly years away and the feeding tube is the best feeding option.

3) We're not making any changes to the ventilator right now. In a few months, we might consider weaning her off the ventilator for short periods of time during the day. However, the ventilator makes breathing easier for Madeleine thereby enabling her growth. Its a pain but its a necessary pain. Again, we fully expect Madeleine to get rid of the ventilator-- we're just a long way away from that happening.

4) The only bit of frustrating news is that Madeleine's blood work showed some confusing information as her liver levels were slightly elevated and her platelet count was extremely high. We're going to re-test at the end of this week and the hope is that these numbers go down. They don't have an explanation for the heightened levels and the hope is that they'll resolve themselves. (What? You thought Madeleine would have a medical update without some drama?)

All in all, we were very pleased with the plan. We'd obviously like for Madeleine to get off all of her medical support but we're happy to have her home and love watching her grow. So long as she's happy, we can deal with a slower pace.

In addition to meeting with Dr. Bloom, we met with a genticist at Children's. The hospital has a great support network for children with Down's and Dr. Rosenberg leads the practice. He is well renowned in the Down Syndrome community and I was pleased that he spent over two hours discussing her medical history and suggesting other things to consider. Taken as a whole, he was surprised by Madeleine's demeanor and progress. He stressed that Madeleine's Down Syndrome diagnosis is only one aspect of her medical condition and stressed that if Madeleine continues to grow and develop, we can expect her to recover and lead a normal life. In the future, we have the option of attending clinic days at Children's where the doctors will monitor specific medical traits more common in kids with Down's. Additionally, the Down Syndrome clinic provides support and recommendations for additional resources if we need it. We're glad to finally focus on issues related to Down's syndrome as this indicates that Madeleine's larger medical issues are under control.

That's all for now-- thanks again for everyone's support. These last 11 months have been extremely challenging but also absolutely rewarding and we can't thank everyone enough for the tremendous support you've provided. Take care,

Brent and Kirsten