Wednesday, October 17, 2007

Life.


Owen's calendar is pretty full for a three month old and this week was especially intense. Monday he had a cranial sacral appointment with Mara. Tuesday was his first physical therapy appointment. Wednesday we had the Holly Ridge meeting to discuss intervention approaches and goals. Thursday was our weekly weight check at the pediatrician's.

Owen was initially scheduled for an MRI at Childrens this past Friday as well, but we decided at the last minute to cancel this appointment. The doctors at Tacoma General and at Childrens Hospital, at each of Owen's stays, felt that an MRI was not necessary. It was made clear to us that a future exam was optional and that should we decide to move ahead with the MRI, their suggestion would be to wait until Owen was at least six months old, if not closer to a year. Their perspective is that the brain changes so much during the first six months of life and that an MRI done earlier would not give us an accurate picture of development and prognosis. We went against that suggestion and scheduled this one at Childrens back in September, to be done at three months. We thought that perhaps there might be something going on in Owen's head that we would need to know about sooner. We had a different perspective on these things a few weeks ago...

We spent the first several weeks of Owen's life wanting to know everything, looking for everything that could be "wrong." I know that much of this was because we wanted to help Owen in any way we could. I think some of this was also due to the fact that we felt if we had every piece of information possible, it would help us to make sense of what happened and that perhaps with this information, we would be able to cope better. The former may be true, but not necessarily the latter.

We've learned that "coping better" actually happens with the passage of time. Just as with any new addition to the family, it takes time to get to know this new individual - what makes them happy, how to translate their signals, what routine works best for them. This is more intense with a special needs child, but the process is really the same.

I think the turning point was coming home after our last visit to Childrens, when we thought Owen was having seizures. We realized upon our return that we didn't want to spend the rest of Owen's childhood looking for what might be wrong. Owen is already three months old and the time has gone by so fast. We are ready to move on and enjoy our life with him, focusing on all of the things that are right and good. We know there will be ups and downs, challenges big and small, good days and bad days and surprises along the way. But that's life. I know everyone reading this knows what I mean. We all are living it. Life, that is. It is both beautiful and challenging and always full of surprises.

The photo at the top shows Owen working on his homework from his PT appointment. A rolled-up towel under his arms helps him build arm and shoulder strength and coordination so that he can eventually hold his head up when on his tummy. Barb was wonderful and we already have a number of things we'll be working on to try to decrease some of the persistent reflexes that might hinder Owen's ability to crawl, sit, walk, etc, and to try to build strength in areas that will help him achieve these goals. She'll be visiting us every week to work on exercises, stretches and intervention techniques.

The Holly Ridge meeting went very well and we are so fortunate to have access to such an organization. We discussed the nature of the evaluations that were done which indicated that Owen has distinct developmental delays - something we already knew but that had to be formalized on paper for Owen to be accepted into this program. We learned that Holly Ridge has a special needs preschool and school for older children at Wolfle Elementary in Kingston, just 15 minutes from our house. This is a huge relief for us knowing that we will have these resources so close by.

Owen has gained 4.5 ounces in the last week. We're hoping for a gain of 6-8 this next week as we've been able to increase the amount he eats these last two days. The liquid cheesecake is working!

We do have a number of appointments in Seattle on Tuesday of next week - Owen's first osteopath appointment, a consult with the nutritionist at Childrens and a follow-up appointment with the neurologist at Childrens that we saw in late August when Owen was an in-patient there. As for the osteopath appointment, we decided to go with Steven Cavanaugh, the DO in Seattle who took over Margaret's practice (the DO on Whidbey that I mentioned previously). She trained Steven and his office and hours are much more accessible to us. We're really looking forward to this visit. The neurology visit is a formality, a follow-up to check in on Owen's status. At this point, however, there is not much for them to do since he is now off phenobarbital. The role of the neurologist is more general cognitive and developmental assessment (which is being more closely monitored by our pediatrician, physical therapist and Holly Ridge staff), interpretation of tests and intervention in any instance of seizures. As we've discovered, we know Owen better than anyone else and usually spend these types of visits filling the doctors in on what we already know about him. The appointment with the nutritionist is for a review our formula fortification to see if there is anything else that can be done.

After next week, our weekly appointments will consist of a physical therapy home visit, an osteopath appointment and our weight checks at the pediatricians. We're hoping that soon, the weekly weight checks will not be necessary (the doctor wants to see 3-4 weeks of consistent weight gain first). We are also hopeful that we won't have to visit Childrens Hospital for several months.

Another piece of good news to add... My mother, Janet, has agreed to leave her job to help us out with Owen. As is the case with all of his grandparents, Grandma Janet loves Owen to pieces and was trying to figure out a way to help more while keeping her job. Meanwhile, we were trying to figure out how to free up some of my time so that I am able to work from home 2-3 days a week for a few hours. Our busy season at Grounds for Change has begun and there are several marketing efforts that I put on hold when Owen was born that I'd like to pick back up. Our thought was always that Owen (at the time, "the baby") would come into work with me. Well, things aren't always as you expect them to be and you learn to be flexible. So we offered Janet a "nanny" position with the Marshall household. She gladly (gleefully?) accepted, saying that this will change her life dramatically, in such a positive way. It will for us also. It will be wonderful for me to have consistent help with Owen, with the house and with taking him to his various appointments. It will also allow me to have a balance - to do the creative work of a business owner AND a mother. Leslie and Herb will still come help with Owen on Tuesdays. We asked if they'd keep this day and they insisted that they'd not have it any other way. The expression on Grandma Leslie's face in the photo below says it all.

Hope you all have a great Halloween - it's our favorite holiday. Owen has his own costume which he'll be wearing to the Indianola Halloween gathering at the clubhouse. We'll share photos...

S/K/O

2 comments:

Shannon said...

I know when we stopped trying to find everything wrong with Darsie, it really freed us up, too. I know so many people that focus on the "bad" and simply don't enjoy their children or their lives.

I'm glad you found a "nanny" situation. It sounds like a wonderful balance to me!

Kathryn said...

So much positive news! Owen has come such a long way already...we can't wait to see how much he will grow and develop over these next few months. He looks so happy in the photos! What will he be for Halloween?! Can't wait to see his costume! (We think Lillian is going to be a soccer player...still looking for infant shinguards...)
love from Seattle,
Kath, Kev, & Lillian