Tuesday, August 14, 2012

Today was the first of many appointments at Childrens this month. We didn't have our first appointment till 11 so it was nice to not have to wake up pretty much in the middle of the night to be there early. We got up at our normal times and ate breakfast then were on the road by 8. Our first appt was a PT assessment. Stella has a PT who comes to our house every 2 weeks to work with her but this is more of an assessment of her muscles. Thankfully she was awake and happy most of the time. She showed the therapist her rolling and sitting and grabbing at objects. I'm always a little sad when she is tickling her feet and ankles and there is no reflex or movement. She can move her big toe and feet but not on a reactionary level. A lot of times when we are out, people come tickle her feet. I think it's just something people do to babies. Her big grin and giggles always distract people from the fact that she has no feeling. Her sensation starts about mid-calf. When I see other babies her age, unfortunately, I compare their feet to hers. Hers are precious and tiny and I kiss them daily, but obviously they do not move like a "typical" baby,

Anyways, the therapist thought she was doing really well. Her hips are showing more movement and are much less tight then when she was born. She thought her tracking, head control, and strength were good.

After this appointment, we took a little break and then went to see Dr. Walker. He is her neurodevelopmental pediatrician. Before he came in, we talked to a 'fellow', who answered my many questions. I brought a list! I read so much online but when we get to actually speak to a professional, I like to get their opinion. We talked a lot about her latex allergy. Did you know Koosh balls have latex? No Koosh balls for this baby. No balloons either. That one will be harder as she gets older but her big brothers are learning they can't have them.

So.... to the shunt. Her head is measuring off the charts. She is doing so well but it's hard to ignore the fact that her head circumference is getting bigger and bigger. So she will have a shunt placed. It is a great invention for people who need them but can be a hassle and have known to malfunction, get infected, and require revisions. It is considered brain surgery. She will have 2-3 nights in the hospital.

I know this is good for her because the extra fluid needs to go somewhere. The doctor really wanted me to know how intense her head will look when its done. She will have a horseshoe shaped scar that once she grows hair, will be unnoticeable. She will also have a small incision in her tummy, where the catheter will be inserted, It runs from the valve in the brain, all the way down to her tummy, where the excess fluid is drained and reabsorbed.. Everything is internal. Once she is healed and with a head of hair, you wouldn't even know it was there.

I'm pretty numb tonight, Stella is my everything. My logical part of my brain knows she will do great but my mommy, emotional side is hurting. She can't nurse for 6 hours leading up to her surgery. I'm praying that she does ok with that. I love her so much and just have to pray, pray, pray for this to all be ok.

Her doctor was really happy with how her back scar is healing. Now that she is getting bigger, it's looking so much smaller. He showed me where to feel her spine where her defect is. You can actually feel the separation of bone. We do massage therapy with her but I try to avoid that area. In about 2 months she will get her first set of AFO's (braces) to help with weight bearing.

In this next few days we will find out more of the game plan. They may want a current CT or MRI before surgery. We have an appointment already set up for Wednesday. So we are waiting to see if they want to do surgery then or wait a week.

Prayer Requests:

1. That Stella does well under anastheia, comes through the surgery with flying colors, and heals quickly.

2. That she does not encounter an infection or malfunction. Many things can fail on the shunt and extra revisions can cause a delay in healing,

3. That Sam and I can emotionally get though this surgery. That we can be strong watching her being wheeled off into surgery. Also, that the boys do ok during this and don't get lost in the stress.

4. That Sams work schedule can work around this and any shifts he cannot work will be filled.


MOM said...

You always amaze me -Your love for your children and attention to detail when it comes to Stella's needs. I saw a wedding picture of you today at work that came up on my screen saver - You were such a different person - 6 years ago - But maybe you weren't really different and we just hadn't seen you maternal loving caring nurturing side. You and Sam are awesome parents - And you will get through this with flying colors just like you have every other challenge. LOVE LOVE LOVE YOU!!!

Sarah said...

<3 <3 <3