Family

My Mom and Dad arrived last Wednesday. This afternoon, my brother Tim arrived. We are having lots of fun with the family here. The kids opened a gift tonight, the puzzle table is out, several games of Star Wars Risk have been played, presents are mostly wrapped, meals are mostly planned, kids have sung at the Retirement Home, more holiday treats have been consumed than I care to know about, and a gingerbread castle has been constructed. Of course, we've been doing lots of talking as well. So, my blog may be silent for the next few days as we celebrate the birth of our Saviour with our family.

Merry Christmas to you all. May the peace of Christ invade your hearts in new way this Christmas.

Look Mom, I Can Move My Toe

Yesterday, I saw Melody move a toe! One toe, for the first time ever. One little toe that brought tears to my eyes and still makes me weepy. Who knew a toe wiggle could be so beautiful?

Yesterday was Melody's second spina bifida clinic and my head is still spinning. We saw four doctors, her case manager, and a social worker. There is so much information discussed, it can be quite overwhelming. Thankfully, our wonderful case manager sums it all up and schedules all the follow up appointments and generally makes sense of everything and writes it on one summary sheet.

Overall, the doctors are very impressed with Melody's health. Her shunt is functioning well and her incisions are all healed nicely. Melody cooed and smiled and charmed her doctors and nurses and generally let them know what a social little girl she is.

This was our first consult with the pediatric orthopedics. I had concerns about Melody's hip, which were confirmed by the doctor. Only, it wasn't the same one I thought had problems. Her right hip moves in and out of the socket easily. So, she will soon be fitted for a "pavlick harness" which she will wear 23 hours/day for several months. It is our hope and prayer that this will solve the problem. If not, the next options are mostly surgical and may not be feasible as the underlying reason for the dislocation is Melody's spina bifida. The thought of the harness is a bit overwhelming, but I think that is the way any new medical intervention is. Once we get used to it, we'll be just fine.

Melody moves her hips and knees, so the doctor was pleased with that. He showed me how to stretch her feet. Her feet curl up and look like beans on the bottom. The doctor wants me to stretch them daily so they look less "beanie." They need to be flatter for her to walk someday. Also, her feet need to be stretched up as they point down naturally. She'll need to have more flexibility in her ankles to walk, so I'll be stretching those daily as well.

I was able to consult with two Urologists. I had already consulted with one and wasn't really pleased with our conversation. Not too long later one of the more experienced urologists "accidentally" entered our room. It was a "God Shot" for me. He was extremely helpful and had a completely different perspective and experience level. He was able to get Melody scheduled for the CMG test in early March, which is earlier than we would have been able to do it. This test will test the nerves and function of her bladder. Based on the results of that, catheterization may not be necessary any more. Here's hoping!

We will return to spina bifida clinic in late March. By then Melody will hopefully already had the CMG test and be wearing the pavlick harness and also had a hip ultrasound to see how the harness is working.

For now, we'll be stretching beanie feet and watching for toe wiggles.

Spina Bifida Clinic #2

Tomorrow morning I will be headed to the doctor early with Melody. In the morning she will have a kidney ultrasound. Then in the afternoon she has her second spina bifida clinic. This will be the first time she is seen by the physical therapists, so I am anxious to hear what they have to say. It will be a busy day and we plan to pick up my parents at the airport before returning home. We can't wait to have Grandma and Grandpa here for two weeks.

Not a Lot to Say

Melody - 3 months old - wearing Mommy's baby outfit.

I know this surprises you, but I don't have a lot to say today. Kevin took the older 4 to a field trip at the USS Midway Museum today and I got a whole day at home with Melody. Talk about peace and tranquility and a few minutes to do what I wanted to do. It was wonderful. I got a lot of things in my "to do" pile accomplished, which lifts quite a load, too.

Here are a few pictures of the USS Midway Museum:

Jail Room

Sisters

Control Room - David in the "Boss" chair

Chapel

*kids are wearing headsets for the audio tour

3 Months Old

It is hard to believe, but it is true. Melody is 3 months old. She continues to do very well and I think she is beginning to cut teeth judging from the amount of drool and fussiness she is exhibiting lately. We are all doing well during this busy time of year. I am trying to let a lot of things go this holiday season and enjoy the advent without too much stress. That is a tall order, but I'm working on it. Tomorrow we are off to a Holidance performance with our school. I have Legoland photos to post as well as Christmas fun, but I'll save those for another night. The train is running around the tree and the kids, especially Joel, are spending much time watching it. We were even able to get a few lights up outside yesterday. We have our gift lists well underway (thanks to the internet) and even did our first round of wrapping tonight.

Dec. 27th - Save the Date

Sunday, December 27, 2009 at 10:00 am we will be having Melody's dedication as part of the Sunday morning service at Missio Dei Community Church. If you are in the area and are available that morning, we would love to have you come celebrate with us. Melody has touched so many lives beyond just ours and we so appreciate your input, prayers and love in her life and ours.

Melody's dedication is about celebrating the wonderful daughter God has chosen to bless us with and committing to raise her to know and love Jesus. When I'm asked what I want my children to be like when they grow up, I have to say, "that they would love the Lord their God with all their heart, mind, soul and strength." That is our desire and prayer for Melody.

I'd love to know if you can be a part of this time of committment and celebration.

Normalcy

Normalcy. I asked Kevin how to spell it, and he replied, "we don't use that word." Most of the time our lives feel anything but normal. I've been thinking about normalcy a lot lately and how much we yearn for it. A normal life. That is what we really want for our children most of the time, especially Melody. That she would be able to live as normal of a life as possible.

The other day I mentioned catheterization to a friend and they replied, "you have to do that?" I realized that my life, our lives, Melody's life looks very normal to those around us. I've had others comment, I know a family with a spina bifida child and it is "no big deal." I'll just bet it was a pretty big deal to them. I've realized that is the role of the parents, and often especially the Mother to make our lives look like it is "no big deal" and create a "normal" life for our child, despite the abnormal circumstances we may face daily.

Now more than even I am aware of the challenges special needs parents face. I have great admiration for friends who made me believe their lives were normal and have created a normal life for their children. I spoke with a mother the other day whose own mother does not believe her grandchild has a specific diagnosed condition. While that is sad, it underscores the reality that this Mom has made their lives appear so normal, that even those fairly close to the situation can't see it. It is a double-edged sword in some ways. We make our lives appear so normal to those around us that it can be a very lonely place as no one understands the real struggles.

So, on the theme of Normalcy, here are some normal Santa pictures. Joel insisted on telling Santa an "important question." He wants the Diego Train for Christmas. Santa asked if he wanted anything else, but no, that is all. Hannah charmed Santa, and Elizabeth sat on his lap for the candy cane. Melody did not scream at all and David declared himself too big for the Big Guy's lap. These are really our first Santa pictures as most years the kids have been too terrified to go near him.