Back in the Saddle

If I wanted to explain why I haven't blogged this summer, I could respond in the following ways:

"I took the summer off"
"I didn't want to write about medical stuff and that's what the blog's been about."
"I've been busy."

All of the statements above are likely a bit true. That being said, I don't know why I haven't been blogging this summer but I miss it and I'm going to start blogging again... perhaps slowly but I'm feeling the urge to start writing about my daughter again. Kirsten's done an admirable job keeping you up to date with pictures and updates and I'm hoping she'll continue in that regard. My focus is going to be... well, unfocused. I'm just going to write what moves me. If folks find it interesting, that's great. However, I'm going to write it regardless as I think it helps me sort out all of the craziness in my brain and I kinda like it...

Okay-- with that out of the way, I want to give a quick synopsis of the last few months as we've really had a wonderful summer. If you've talked with me this summer, you've probably heard me say something like "the real Kirsten and Brent are back" meaning that we've been busy and we've been travelling. In the past two months, we've been in the following cities:
- Outer Banks, North Carolina for a week-long vacation
- New Orleans, LA-- Kirsten and I took our first weekend vacation sans Madeleine
- Baltimore-- we visited with Kirsten's parents on their boat.
- Flint-- we visited with family back in Michigan.
- Talcott, West Virginia-- Spent a weekend at our cabin
- State College-- Attended a PSU football game and hung out with Kirsten's parents.

You could say that our motto has been "have healthy child and will travel." Of course, some of this travel has been condensed in the summer as we've been advised to slow things down this fall/winter. The flu season is scaring the heck out of us-- as well as our doctors-- and we're going to do our best to avoid getting Madeleine sick this year. It's important that she stay as healthy as possible as she's growing like crazy right now and her lungs can make major strides if she can just avoid getting sick.

In addition to our travels, I've been pretty busy as I'm training for a marathon in November and am teaching a class at Kirsten's school. The class ends tomorrow night but the past five weeks, I've taught an introductory course in English and Math to prospective college students. I've really enjoyed the class as it is composed of students who did not do well in high school but want to get into college and they must pass my class to be admitted. The class requires equal parts of tough love and dedication to getting kids over the hump and I feel like its a perfect match for my skill set. Of course, while I've been off on my long runs and/or teaching and lesson planning, Kirsten's been pulling the heavy load in our house and Madeleine's tremendous strides this year are a direct reflection of her steady focus and determination to ensure Madeleine's success.

I'm sure I'll write more in the coming days and weeks contrasting the joy we've felt this summer with the diffficulties that we struggled through last year but this post is simply about feeling good. In that vein, here's the update that we just sent to our state coordinator who asked for an update on Madeleine:

Madeleine is doing really great. We finally settled on October 9th for the surgery date as this is the first date that our surgeon and cardiologist were both free—they demanded that they both be available. We’re changing her bag at least once/day as Madeleine is extremely active. Needless to say, we can’t wait for the surgery.

In terms of general medical issues, we have an appointment with our pediatrician later this month (I forget the specific date) for a regular check-up. At the check-up, we’re expecting to get the RSV shots (I forget the specific name) as well as the flu shot. We’re definitely a bit freaked out by the H1N1 virus and we’re hoping to avoid that at all costs. Our pediatrician has us at the top of her list for the shots and we’ll be coordinating with her office once it arrives.

In terms of physical development, we’re working closely with PG County’s Infants and Toddlers on her OT and PT goals. She’s slowly getting closer to crawling and we’re also beginning to work toward walking. We (meaning Kirsten) found a research study online where parents use a treadmill to encourage walking and the results of the study showed that kids with Down Syndrome can walk much sooner if encouraged to walk on a treadmill for a few minutes/day. I know it sounds crazy but it’s a research study from the University of Michigan and pretty much everywhere we looked, folks are praising it. In any case, we watched a number of videos online (YouTube is great) and we tested the idea out this past weekend at Kirsten’s parent’s house. Madeleine really seemed to like it, so we’re currently scouring Craigslist to purchase a treadmill. In terms of fine motor skills, we’re working with Madeleine to pick up toys and then set them down—she has the picking up down pretty well but she’s mostly just flinging them away right now. Our therapist explained that this is a normal developmental stage and believes we’re making good progress. We just think we’re having fun.

In terms of eating, we’re making slow progress as Madeleine is eating small amounts of pureed baby food twice/day. She took a swallow study about a month ago and demonstrated that she’s able to protect her airway when swallowing. Still, she’s not really coordinated with her swallow and its going to take a long time before she’s eating anything that constitutes a large amount of calories… In the meantime, we continue to condense her feeds and we hope we’re close to start bolus feeding via the g-tube. We have a follow-up appointment with the GI clinic at the end of the month where we’ll establish her future feeding schedule. Over the past month, we’ve increased her calories quite a bit as she wasn’t putting on a great deal of weight. Note—I’ve used the past tense as over the past month, Madeleine’s new nickname is “Large Marge.” We don’t have a scale at home but we’re confident she’s gained plenty of weight this past month—holding her is getting to be a chore—and we’re elated with the growth.

In terms of speech/language development, PG County, through Infants and Toddlers, is sending a speech therapist next week to assess Madeleine and we’ll establish some new goals with them. We’ve also decided to pursue additional speech therapy through the Columbia Speech and Language Center—they focus specifically on issues related to Down Syndrome. We’re going to work one-on-one with a graduate student once/week and we think this should really help her development. Our first appointment is this Friday, September 18. We’re also starting to use sign language and we think that by combining sign with the other speech therapy, we’ll help Madeleine to start communicating her wants/desires. (that’s the goal at least.)

Nursing is going well. We’ve condensed our nurses down to two primary nurses during the week—one during the day and one at night. We prefer this as it ensures consistent care and also limits the number of germ infested people coming into our house. Fatima and Deborah have quickly assimilated into our family and its been great but also challenging. Its hard to be away from Madeleine during the week knowing that we only get about 60-90 minutes/day to work with her (she falls asleep around 7:30 every night). The nurses have been pretty good but no one can do all of the work that we’re capable of doing with Madeleine. Our day nurse attends all of the therapy meetings with us and we’re doing our best to express our goals for the nurses so that they can help aid in Madeleine’s development.

I think that covers the majority of our work right now. We’re pretty happy right now as we feel like we’ve come a long ways and despite the challenges ahead, we’re encouraged by Madeleine’s steady progress. We don’t have appointments set up with any specialists other than GI as they’re all waiting to see how she recovers from surgery. Rest assured, we’ll have a host of appointments—with pulmonary, cardiology, ENT, GI & genealogy—set-up when we’re discharged from the hospital. If all continues to trend in the same direction, the goal is to start talking about removing the trach in late Spring/Summer next year. We have a long time before those discussions get serious.

That's all for now. I hope everything is well with you and your family.