Saturday, September 18, 2010

What a month!

I can't believe it has been two months since Grace was born. But it's really been this last month that has been so profound.

While taking this picture I couldn't help but think about how much has transpired since we took her "1-month-old" picture. It was only a couple days after that picture was taken that she was admitted into the hospital. Since then our lives have been changed forever and our priorities re-written.

Today, Gracie is doing much better. Her alertness level is significantly better then it was a month ago. She has gone from being alert 2-4 hours a day to about 6-8 hour a day. Her eye contact, tracking and imitation has also improved gradually. But perhaps the most notable improvement has been with her weight. At 1-month-old her weight had been hovering around 6 lbs. 5 oz. As of this morning she weighted in at 7 lbs. 14oz., a one and a half pound improvement in about 4 weeks. I think the increase in nutrition has certainly helped her thrive.

Last week her neurologist, Dr. Friederich, saw her. He was pleased with her alertness level, tracking and muscle tone. He told us he doesn't normally order frequent EEG's because of the expense, but in her case he wants to follow them more closely. So she'll have another EEG on 9/27. Fortunately for her, the most uncomfortable part of it is mommy and daddy trying to get all that gunk out of her hair afterwards.

She also saw her pediatrician, Dr. Wang, last week. She too was very pleased with her development. We increased her feeding volume to 90 ml. (3 oz) every 3-hours and a teaspoon of fortifier for extra calories. She also got her 2-month immunization shots and we both got flu shots. We also went to the lab for a blood draw to check her CO2 levels. They are still elevated, but not at dangerous levels. And like I've said before, her body is compensating for it just fine. Her oxygen saturation continues to be just fine even when not on the oxygen. At this point we're mainly putting the oxygen on overnight at .25 liters.

Grace has also been accepted into a research project on Infantile Spasms at Washington University School of Medicine in St. Louis. Per our request, Dr. Friederich found this research study and felt Grace would be an appropriate candidate for it. After speaking to the director, Dr. Paciorkowski, we decided to enroll her. 

Infantile Spasms is a type of epilepsy that affects children under the age of two years. Affected infants develop a particular type of seizure. These seizures look like the baby is trying to do "sit-ups" or "crunches". Sometimes the baby may bend his or her arms and legs in, sometimes the baby may throw his or her arms or legs out.

Even though Grace doesn't have Infantile Spasms, in some cases Early Myoclonic Epileptic Encephalopathy (EMEE) can lead to it. So she will be part of this study for several years to see if her condition transitions to Infantile Spasms. Although it's unlikely she'll benefit medically from her participation, it will help further the research into this area which is largely unknown. What we will benefit from the most is the knowledge and discoveries made following her. The researchers will be conducting their own DNA testing and studying her EEG's. So for us, to have a team of experienced researchers following her will only add more value to what we're learning from her local doctors.

Last week Grace also got to spend some time with her grandparents who drove up from La Quinta to see her. I think it was a very touching time for them to see and hold her. It's been a long time since grandpa held a baby.

As for Holly and I, we're doing OK. We're still trying to adjust to having a baby who requires so much from us. I think the most difficult thing is the lack of sleep. Due to Gracie's frequent feeding schedule we're only in bed at the same time for about 3 hours a night. I think for us it's a big juggling act between our business responsibilities and taking care of Grace. Last week I had a finance meeting with our CPA and Holly was busy seeing clients. So I took Grace into the office with me. Fortunately, she slept through most of it, who wouldn't. And that juggling act is going to get even more complex when escrow closes on our new office and I have to manage the daily activities of our tenant improvements. 

But even with all of these challenges, we're in high spirits and enjoying our time home together. No matter what issues we face, being home with Grace is always in the forefront and what brings us the greatest joy. We don't dwell on the "what-if" or feel sorry for ourselves. If anything, we feel grateful to have such a beautiful baby who we can shower with love. We continue to receive cards and gifts from people all over the country who have been touched by Grace. Some are friends of friends or church acquaintances we've never met. It's truly so humbling to get a card or gift from someone you've never met sharing their words of encouragement. You'd expect to hear that from a friend or family member, but a stranger (if you can call them that) is truly uplifting. So thank you again for your continued support.


  1. Brien and Holly you are so accurate on your assessment of what the study will do for you all. Our son was diagnosed with the Early Onset of Childhood Schizophrenia and he too was involved in a study for his entire childhood through the NIMH in Bethesda MD. The free medical testing and the knowledge that was bestowed on us truly helped us keep going through the years.

  2. I haven't checked this blog in a couple of weeks. I'm so pleased to hear all of the positives! You rock, Gracie! Linda (friend of the Haskill's)

  3. Gracie, your grace is what has touched so many hearts. You have a huge heart and will always have a place in ours! Keep up the great work and Go Gracie Go! We love you, the Deckers

  4. Gracie, you are one tough little angel...keep up the good work and keep gaining weight..your mommy and daddy are the best parents! Love Patti

  5. Gracie, you are an ispiration to my family. We have been participating in your weekly challenges and you have taught us a new way of looking at ife. You are a precious love Gracie, you have touched so many lives in such a short time. You truly are a Grace from above.