Wednesday, March 30, 2011

Possible Predicament Looms in the Future

I'm going to backtrack a story into this blog post, because something really cool happened a couple weeks ago, and something really cool and similar happened today. Vincent had his first dental appointment. I was fussed at by the dentist for giving him too much Juicy Juice. My son is very demanding with his juice and refuses to drink water. It's quite a battle. We've started putting MiO into his water and it's helping a little bit. He still doesn't have any cavities, but most likely will if he keeps up his *cringes* almost 30 oz. of daily juice habit. Well presently, since the dental appointment, he gets usually only one cup, possibly two now a day. With Marlena's early intervention came the optional support group "Family Connections." Being the social butterfly that I am, I accepted and I'm so glad that I did. They partner you with another parent, who usually has a child with the same condition, and you connect via phone/e-mail. My family partner is such a strong woman and I'm so glad I've been able to talk with her and hear her story. Talking to her really helps to reassure me that no matter what happens, it will all be alright in the end. As I was talking to the dental assistant, I casually asked when Marlena should be seen for her first appointment. I mentioned that she had hydrocephalus. Guess what? My family partner heard me say "the word" and recognized us. It turns out she is a dental assistant there! It was so great to meet her.What a small world.

Today was really rainy. I took Marlena to see the neuro's office today to discuss with the nurse practitioner her take on the last CT scan. She wasn't able to compare this scan to her MRI, which was done back in December, because she explained that she doesn't have the capability to do so. Only her neurosurgeon can do that. I will have to wait eight long weeks before I know just what exactly is going on in that pretty little head of my daughter.

What's clear, is that her left ventricle is still pretty enlarged. The nurse practitioner thinks there is a possibility that it may not be communicating properly, or well enough, with the shunt. There could possibly be a membrane blocking it.Our discussion about the possibility of surgery was short, but scary. When Marlena first received her programmable shunt, the setting was at 100. After monitoring her head circumference and observing no plateau, it was decided that it be turned down to 90. Today, it was decided that from a clinical standpoint, that the shunt pressure should be lowered to 80. So now, we're flowing faster than ever before. We did the routine x-ray to make sure the setting was good. I hope changing the pressure gives that left ventricle the jump start that it needs to start cooperating. Some options that were discussed today were that a catheter be inserted into the left ventricle. It's basically like another "straw" that would be hooked up to her shunt. The other option she mentioned was poking holes in the ventricle. (I'm assuming this is something like an ETV.)

On the CT report, I noticed a word that I hadn't been informed of and didn't understand. "Encephalomalacia." This is the softening of the cerebral cortex, and was basically described to me as "brain damage." The way this was worded into the report was "Probable encephalomalacia left super lobe." The nurse practitioner is always very hopeful and told me that it may not stay this way. It's all confusing to me.

I am usually pretty observant where ever I go. When I'm sitting in a waiting room, I look around and check everyone out. I just like to know who's around me. I had to wait almost 40 minutes before Marley and I were called back. Our appointment lasted most likely around 30 minutes. When I came back out, a couple with a baby who was already waiting when I checked in, were still there!! Waiting. On my way out, I asked, "You still haven't been called back!?" "Nope," they replied, and then it hit me. I recognized this beautiful family!! It was so nice to meet them and their beautiful miracle. It was brief, but sweet, as they were called back right after the revelation that I recognized them from Facebook. It's funny that we later found out that our next appointment is also on the same day, which is so strange, considering they have different neurosurgeons. And again, what a small world.

We have a neurology appointment for the end of the month. I'm kind of scared, considering nothing else has happened. I don't want to learn something that I don't want to know yet, if that makes any sense. 

My mother just had shoulder surgery done on Tuesday and she's really sick from the medicine/general anesthesia. I was good to her and brought ginger ale, jello, and picked up her phenergan for the nausea. I hope you feel better soon, Mom. I love you.

Tuesday, March 22, 2011

Portrait Day

I think they turned out great! This is one of my favorites! She is such a strong baby, she really inspires me!

A small update on how things have been around here:  At her last neurosurgery follow up, her neurosurgeon proved to be, again, the rudest man known to his practice. Apparently, without giving him any inkling of insinuation that I didn't already know she had a condition, he told me I needed to be realistic about her development. She is who she is. I don't need his opinion about her development. His job is to make sure her surgery is still doing well. I'm pretty sure he gets the picture now, that I don't care for or want his opinion concerning that topic.

Wednesday, March 9, 2011

Second Infusion

Joshua and I left early on March 8th to drive up to Duke University Hospital for Marley's second cord blood infusion. To give a little bit more of an explanation, I am going to refer to what Amy said, because she put it so perfectly well:

"Stem cells are "undifferentiated," meaning they can become any cell in the body. The blood from a baby's umbelical cord contains millions, or sometimes even billions, of stem cells. During pregnancy, babies continuously receive stem cells as they grow. Once a baby is born and the umbelical cord is cut, they stop receiving them and the stem cells die off if they are not preserved. Dr. Kurtzberg has found that by giving babies back their cord blood at various points in time, the stem cells can help "repair" damaged brain cells in babies with hydrocephalus. Dr. Kurtzberg is currently the only doctor in the world offering this treatment, so we feel very fortunate that she is so close by."

Our appointment was actually at 1:15 PM, but we arrived at Duke at around 11 AM, but I had a message from the clinic telling me to come on up if we were early. It's a good thing we did that! We checked into our hotel at around 8 PM after 13 IV sticks on poor Marley. She was obviously not an easy stick. It was very frustrating for everyone, but she got her cells and that's what matters!!! The Duke team are all so awesome and they did their very best job to make the sticking minimal as possible, but Marley's veins just weren't behaving.

We had planned to meet up with other moms who have kids with hydro, but two of the kids became sick and had to cancel their appointments. Get well soon, sweet Elisabeth and Blake!!! I am so sad that we weren't able to meet up with Clair Bear, but we will see each other again soon sweetheart!! We did, however, get to meet up with The AMAZING Owen Higgins and his wonderful mommy, Michele. Owen is such a cutie! He has the cutest facial expressions. He was doing some serious texting when we met, but he was able to take a break for some adorable pics with my sweet Marley. I can't wait for Michele to post them, I just know they turned out awesome. So, everything doesn't turn out how we always plan it. We didn't all get to meet up and have a beautiful reunion with our kids who all have something so special in common. We've learned that well through our respective pregnancies. To which I leave you with this:

P.S.    Marley's breath still smells like creamed corn.   :)

Wednesday, March 2, 2011

Physical Therapy 101

We had our first physical therapy appointment today. I think it went really well. The physical therapist found more things that Marley needed to work on than I thought she would! She sees things that I never would have thought could be an issue, but I guess that's why she's the physical therapist! I really like our therapist. Her name is Miss Karen and she has been doing her job for 22 years. That makes me feel really, really good. She has a 16 year old son herself and she's the only person who will ever see Marley, unless there's an emergency for her, of course. I think that's just great! It's a great environment that sees only kids. I already spoke with a few parents in the waiting room and it was soooo nice to speak to a parent that didn't have our exact same diagnosis, but just "gets it." Our list of homework is a little overwhelming, in trying to remember exact positioning of how I should be doing her stretches and other exercises:

Home Activities

1. On her stomach, place small blanket roll under her nipple line.

-  Stretch the front of hips

-  Work on lifting head

-  Put weight through elbows

-  Think about putting weight through buttocks and legs

2. On her side, stretch the back and side of the neck. Also stretch the side of the trunk.

3. Lying on your lap with her head in the middle.

-  Tracking eyes

- Focusing on your face

- Work on turning head to the left and turning eyes to the right.

So this is a lot to work on! I think I will know how to be a physical therapist by the time she's three years old!