January 15, 2010

Clinic Appointment

This morning we had our spina bifida clinic 6 month appointment. This consists of seeing many doctors back to back, in theory, throughout the morning and sometimes into the afternoon. Thankfully for Whitney and I it was only the morning. At two years old Whitney weighed in at 26.5 lbs and 34 inches long. I will highlight the main points for you.

Speaking of height. He mentioned Whitney may be at a disadvantage in the height department. Each child with spina bifida has a tethered spinal cord. This means the spinal cord becomes caught, or tied down during bone growth by scar tissue and needs to be surgically released. Since we are a tall Dutch family she is genetically disposed to being taller and may have more issues in this area. We can only hope she received the long leg gene and not the long torso one. He has no concerns with her and said we can see him in 1 year!

Physiatrist (rehabilitation physician):
Thought she looked great. He encouraged us to do some spatial and language testing when she is 4 1/2. (You may need to remind me that I need to make that appointment, since it is only 2 1/2 years away.) Many children with spina bifida struggle in these areas to varying degrees. This is one of the many ways that spina bifida is hard to treat because there is such a wide spectrum.

She thought her spine, feet, knees, and hips looked great. She also told me not to be emotionally attached to her hip growth and I quickly admitted that I was. She warned/prepared me that although her left hip is growing great right now, it is still weak and may very well come out of socket... I am so invested in this hip as we have spent many months 'nursing' it. I guess it is a great reminder not to discontinue praying for it, as God is ultimately in control. She also said that she is not seeing very much quad strength and that without quad strength it makes walking very difficult. She is not saying so now but alluded to having higher braces than just her AFO's for walking. She also wants us to start the search again for a standing frame. So, if you know of any we are in the market again!

I also wanted to mention to you that I have been blessed with getting together once a month with other spina bifida moms in the area. We just had out coffee night this week and it is so encouraging to chat with others who are in similar circumstances and who understand. Thanks ladies!

January 7, 2010

Whitney, you are two!

Can you believe Whitney is two already? Matt and I reminisced a little this morning. We were expecting a planned c-section on the 8th and I went into labor on the morning of the 7th. What a surprise! I think she was more than 2 weeks early. I can hardly remember. I just remember having contractions and thinking, "I am not prepared for this". Labor was not an option with this pregnancy.

As I was thinking about what to share with you today I had a difficult time remembering too much about that day two years ago. I have to say that I think it is a blessing. I even went back to read the posts from that week. What an emotional time that was. A few things stand out to me. I remember that not being able to hold her was so difficult for me. I just wanted to sneak in there and snatch her up. It was also so surreal to go home and leave her there. These are both so unnatural. Here are a few pictures to help narrate her first two years.

This picture brings tears to my eyes as it helps me remember the first time I laid eyes on our dear Whitney.


Meeting Fiona

7 months old (starts wearing hip brace & still smiling)

The purple cast

I am one!

Starting to stand. 20 months old at The Conductive Learning Center.

I am two today! Today we had a fun day of celebrating. We made Christmas cookies, & went to the library. I know, I am a month late, but we finally made time for it. I am not gifted as a craft mom and it is hard for me to justify making such a mess. We enjoyed ourselves as Whitney kept saying, "mess, mess".

January 4, 2010


We had a wonderful Christmas over here. It was pretty busy but a great time with family and friends. The girls are learning life lessons about envy and sharing. Fiona received a new baby doll for Christmas. Whitney saw it and immediately started to cry and yelled, "my baby, my baby!" She is still 'stealing' it whenever Fiona is not paying close attention. We are also learning about sharing as so many of our new toys are age appropriate for both of them. Fiona received 3 small my little ponies and immediately said, "this pink one is for Whitney". Those are the proud moments. The girls are also learning how to play together and love each other. I put a lot of emphasis on this at home as I know that they will need each other in life not only to get through the play ground years but beyond as well. I pray that they will have a true love for each other.