Two Diagnoses

It has been almost a year since I have written. I've had conflicting feelings about this blog, and namely, how much of Sweet B's story to put out into the world. I have read several articles about "mommy bloggers" who write everything about their children's lives. What are the ramifications of this? When they are thirteen, will they want the world to know how they pooped in their pants at the park? In my case, will Sweet B want her friends to know her diagnoses? Will she be embarrassed by the pictures of her at one pound and eleven ounces? I don't know the answers and I haven't decided what I am going to do. I want to honor her and her story and allow her to be the one to tell it but I also want the support now. I don't want to feel alone and secretive when we are told discouraging news, as we were recently.  So at this point I will leave the blog up, maybe update a lot, maybe not at all, and take it down when I feel like it's time.

My hope is that Sweet B will proudly boast of her fragile beginnings, her diagnoses, and just how much she proved every single doctor wrong.

By the way, "diagnosis" is one diagnosis, and "diagnoses" is more than one. I checked.

First things first...We have been doing really, really great! Sweet B is just blossoming. After a year of advocating for therapies for her, I've actually pulled her out of five of the seven weekly therapies, so that she can grow through real life experiences. I joined a moms group and we go on play dates. I put her in a little gym class with typical kids her age and she does so well!

Oh...I guess I should have told you that she is WALKING!!!! In November, as my Christmas present, she started walking. And our world opened up. Suddenly we were playing at the mall playground with other kids and walking across the sand on the beach and climbing the stairs at the park! Her gait was strange at first, and continues to be a little different, but I don't think that a person who doesn't know her would know that she just started walking a few months ago!

Backing up even further, in July she had her spina bifida occulta surgery to untether her spinal cord. There were some problems with infection so she had a hospitalization and a few other things.

Then in August...I had my baby boy, who I will call Brave B. He became my healing baby. Sweet B is the baby who gave me strength, and Brave B is the baby who is healing my heart. He is beautiful and perfect and he breastfeeds, going on nine months now. He is almost crawling and he is just like my husband; calm, happy ninety-nine percent of the time, and a real joker. And he's just as handsome as his daddy.

Now I will share the hard stuff, because as we've been learning the last few years since Sweet B's birth, there is always going to be hard stuff.

In September she began going through "episodes" of extreme retching. Because of her nissen fundoplication (her stomach wrapped around her esophagus to prevent reflux), she cannot vomit. So she still gags like she is going to vomit, but nothing comes out. Exactly every four weeks, she has a retching episode that lasts a week. She turns pale, drools, stops swallowing her saliva, and completely stops talking. We have to put her on continuous feeds through her feeding tube (yes, she is still not eating), and we are up all night due to her crying in pain. We've made countless doctor visits and we had concluded that she had bowel obstructions due to constipation, since her digestion almost completely stops. That is until the emergency room did an x-ray and found no bowel obstruction. Perhaps the strangest part of this is that suddenly she comes out of it. After five to seven days like clockwork, she is completely better. Like a snap of a finger.

Her GI doctor called me and told me that she knew what was wrong, and before she even told me the diagnosis, I told her what I thought it was, and I was right. Cyclic Vomiting Syndrome (CVS). It is related to a migraine disorder and is probably caused by her tethered cord or the fundoplication surgery. We are learning how to manage this, but it is extremely stressful for all of us. By day five I am depressed and scared. Two episodes ago we had a four day hospital stay and we fully expected to go back this month, and I even started packing for it. However, through careful observation and administering of different medications, we were able to keep her out of the hospital. The disruption that it causes in our lives....is inexplicable. But we will get through this.

My last thing to tell you is something that makes me very, very sad. I will be okay and I know that Sweet B will be okay, but I'm still sad. When delivered the diagnosis yesterday, the nurse and director of the clinic told me that I am allowed to have "my shower moment" and I've had a small cry, but not the long one that is necessary to move on.

Sweet B was diagnosed with cerebral palsy with hypotonia (weakness) on Monday. I was expecting it and I have known it for the almost three years that she has been alive. We went to a world-renowned doctor to hear this. Him and his fellow doctors examined her, looked at her MRI, discussed it, and diagnosed her. Before he came in the room with his news, my husband and I had a brief moment where we thought she had escaped this diagnosis that often goes along with prematurity and being a micro preemie, but we were not fortunate enough. Cerebral palsy is brain damage, and I've known she had this since her MRI last summer, at the same time that her tethered cord was diagnosed. Spina bifida and cerebral palsy don't go hand in hand, but in her case, she just happens to have both.

We have to be on the lookout for several things. Her hypotonia (weakness) could turn hypertonic (tight). If she starts toe-walking or holding herself in strange positions we need to get her seen immediately. She might have to have surgery or braces in the future. Because of her tethered cord, which is now untethered, we have to make sure that she is able to completely eliminate her urine. If she has reflux into her kidney she might have to catheterize herself in the future. BUT...I am not going there in my mind. There are many things that might happen to any of us. This does bring me comfort.

My husband has been telling me that it could be worse. Sometimes that brings comfort and sometimes it makes me angry. Yes, she could have died in the womb, which was very likely. Yes, her brain damage could be so much worse. And believe me when I tell you that I remind myself of that daily. But it still doesn't take away the worry or the sadness.

It is still sinking in. This weekend we are going to Disneyland and have a doctor's note to give them that will likely allow us front of the line privileges. Her nurse told us to advocate for her, and teach her to advocate for herself. Her daughter, who also has mild cerebral palsy, proudly goes into theme parks and demands her front of the line privileges. Just like I hope Sweet B will do someday.

Cerebral palsy can range from very mild and not noticeable to very severe. Sweet B's is mild at this point and I pray that it stays that way. It is not progressive because the brain damage doesn't get worse, but the effects on the body can be progressive. Believe me when I tell you that I am going to do everything in my power to keep this girl as strong as she can be.

Cerebral palsy sometimes affects cognition, but often times it doesn't. This means that Sweet B could be a doctor, or a teacher, or whatever she wants. And I'm not just saying that. She's a smart cookie. Even people with severe CP who cannot talk, can use communication devices, and there are doctors and scientists and engineers with CP. It is brain damage that affects the muscles and muscle coordination. Sweet B will always have it, although we can do many things to help her and empower her.

This also explains her dyspagia, or poor swallowing ability. Children with CP with hypotonia often have feeding difficulties. The good news is that it gets better. I know that she will eat.

In the NICU they called her sugar and spice and she is still like that today. She's feisty and demands that I give her things and follow her around and when I'm lucky she'll give me a big hug and a kiss. Or she'll grab the glasses off my face in front of a large crowd as she did the other day and thoroughly embarrass me, as every parent has experienced.

I know this blog post contains two diagnoses that I didn't want her to have. However,  I couldn't be happier with her progress. She is like a caterpillar turning into a butterfly. She is making friends. She dances and can almost do a forward roll! She loves her little brother and she loves to say his name.

We spend our days going on play dates and going to the park. We nap and we sit at the table and eat (or rather she eats one bite and watches us eat). We play in our backyard. We read and laugh every day. We are happy.

This week I have a lot to process and honestly, I'm sad. But I know that as usual, I will move on and become stronger because of it. I will leave you with one last illustration of how blessed I feel to live my life...

During our first little gym class I watched her walk across a balance beam (holding my hand of course). I watched her stomp bubbles and pull herself up on a bar. While things like this are an everyday occurrence for most parents, I screamed and had tears in my eyes throughout the entire class. I just couldn't believe that I was so lucky to be able to see this miracle happening before my eyes. My daughter was running and climbing and stomping on bubbles! Because of her, I am able to see just how miraculous and tender this life truly is.