Good News!

I'm very, very, very happy to report that the wonderful nurse from the pediatrician's office just called to let us know that her MRI came back 100% clear! There is nothing to suggest any abnormalities, tubers, or anything else we need to worry about. We are, to say the least, very pleased.

They drew blood today to do some genetic testing. We won't have the results from the blood work for awhile. I'm not sure exactly how long, but I think a few weeks. So, I guess there is a chance Baby J doesn't have TS. It's something I've known but haven't really been able to entertain until we had more information. I guess I'm feeling more optimistic about all of it now. It's still scary but at least we know her brain and kidneys are totally fine.

Thanks for all your kind words! I'm raising a virtual glass of Champagne to you all!

The Magnet is ALWAYS On

Well, that's what all the mats on the floor say in the MRI area of the hospital. For some reason, I found it amusing.

We're home, but I don't have any news yet. Baby J was a champ. She didn't cry about not getting to eat, to my relief, even when we had to wait an extra 40 minutes in a random waiting room for her MRI because the guy before her was late. She woke up from being sedated smiling and cooing. One of her anesthesiologists was one of the dads from our birthing class which was a pleasant surprise.

She's napping now. I'll be back when I have something more to report. Thanks for all your support. And thanks to my two best friends, one who brought us muffins and made us lunch and the other who is bringing us dinner tonight. I'm a lucky, lucky girl.

Fever Pitch

All this election news has really reached a fever pitch. This morning the countdown on CNN said
"First polls close in 8 days, X hours, X minutes", not just "Election Day" but "First Polls Close". Crazy. Personally I can't wait for this all to be over. I feel such a desperation over this election. I don't just want Obama to win, I need him to win. Baby J needs him to win. When Sarah Palin was first announced as McCain's running mate I was petrified. All we heard about was Sarah Palin. I thought it might be the end of Barack Obama. Thankfully that isn't the case and now I'm optimistic. Cautiously optimistic.

This election cycle has inspired my husband to pursue some of his own political interests. He was appointed to a planning commision in our county and is considering a run at a city counsel seat in March. It is amazing to watch him follow through on some things he's been talking about for awhile. It's a little scary to think about him running for some sort of office. We aren't wealthy and that seems like a must to be a politician these days but I support him no matter what. And I'm prepared to go door to door for him, in the winter. That's love.

I think this election cycle has inspired lots of people who never pay attention too. Hubby has two coworkers who never really vote but are going to this year. One is a Canadian who only recently naturalized and has never really paid attention. This year, she cares. Another is a woman who, if she voted, probably voted Republican. This year she's voting for Obama. I love these stories.

Here's Baby J's endorsement:



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On a totally unrelated note, Baby J goes in for her MRI on Wednesday. I work a double tomorrow so I won't be back here updating until we get home Wednesday. Hubby and I are both nervous about the whole thing. I know things will be fine but I think it's going to be scary to see Baby J with an IV and sedated. And she can't eat for four hours before the procedure. Thank goodness it's at 7:30am! I'm setting my alarm for 3am so she can eat on last time before her MRI. I was doing well with everything for awhile but thinking about Wednesday makes me all emotional again. A woman from the hospital called this morning for a pre-op interview. She knew all about why Baby J was coming in and she was so nice. Sometimes I'm overwhelmed by how nice people can be. I'm okay if it's all business. When someone adds some emotion into it I'm a disaster. Anyway, I'll be back with an update when I have one. I have no idea how long we'll be at the hospital or when we'll hear anything.

An Update on Life

I realized I've been so focused on Baby J's diagnosis I haven't really talked about much else. So, here it goes.

• Work is good. I usually work two and a half days a week. The two full days are l-o-n-g. I work both the lunch and dinner shift but I'm able to get out for an hour between to go see Baby J at school. It's a nice break. I'm the assistant manager at the restaurant. For me, it's a good mix of responsibility and being able to leave the drama there. There are some odd dynamics at the restaurant but there's drama everywhere and I can live with this drama.
• My sister is gone. She left two weeks ago now. It's hard to believe she was here for six months. It came and went so fast. There were times where I'm sure we annoyed each other but after Sister being gone so long it was nice to have her around. She was a great help with Baby J too, especially in those early days when we were home together all day. I certainly needed her then. And I miss her now. Come home soon, Sister!
• Baby J continues to thrive. She had her pre-op appointment at the pediatrician's today to get cleared for her MRI next week. Apparently she has an ear infection but she hasn't been acting like she doesn't feel well so I was surprised. It's been about four weeks since her six month check up and she is up to 16lbs 3oz. I'm glad to know she's gaining weight because I'm not feeding her at night as much and I was scared she might lose weight again. We have weaned her off her pacifier. It wasn't totally intentional. We wanted to get a better sleep routine so we did a little ferber/cry it out and decided to get rid of the pacifier at bedtime. The sleep training went pretty well. We thought about giving her the paci during the day but when she found her thumb on her own it didn't seem necessary anymore. I'm not sure which is better but I'm happy to not have to go diving for her pacifier when she spits it out. The sleep situation still isn't 100% ideal but I'm trying to relish the quiet night time feedings because I know they won't last forever.
  
• In addition to her pre-op, which was fine other than the ear infection which shouldn't affect the MRI, I had an appointment with the pediatric geneticist to get some questions answered. I had been talking to the genetic counselor quite a bit but she didn't feel like she could really answer all my questions so I sat down with the doctor today which was nice. She's very patient and understanding. Baby J is in good hands.
  
• While I'm still emotional at times when thinking about the TSC diagnosis, I'm increasinly hopeful that Baby J will be minimally affected. I just don't see how, right now, it could be any different. I realize I could just be in denial but with her crawling and babbling and clapping (which the pediatrican said babies don't usually do until 10 months!), I just find it hard to believe she is having any TSC related problems.
• Hubby seems to be doing pretty well. I think we need a date night. It feels like lately if I'm not working at night, he is. It's that time of year for him, but I'd like to go out, have some wine, and be a couple for a few hours. Otherwise, work is going well for him and he loves being a dad. He's good at it too. I'm a lucky lady. That is for sure.
• Life continues to move at lightening speed. Baby J is seven months old today. I'm not exactly sure where all the time has gone but I am really trying to enjoy it. Soon the baby days will be a thing of the past.
  

Update

Just a quick update: The ultra-sound tech said Baby J's kidneys looked fine. With little ones, they have the pediatric radiologist look over the films while the patient is still there. The doctor didn't feel the need to talk to us or look at Baby J so I take that as a good sign. I haven't heard from our pediatrician who I asked to check on the results but since the tech sounded so confident I'm feeling okay with that. Maybe our doc is having a busy day and she'll check in later. If I find anything else out I'll be sure to let you know.

Just as I pushed the publish button my phone rang. The nurse at the pediatrician's office said the ultrasound was totally normal! One test down, many more to go.

So It Begins

Tomorrow begins the battery of tests Baby J will undergo to see where we stand with her TSC diagnosis. In the morning we will go to the hospital for an ultrasound on her kidneys. I guess there's a lot I'm still processing. I've had a couple conversations with the genetic counselor this week. She's really great and has been trying to get answers to some of my more specific questions. I have a lot in my head but don't really know what to put down here or how to do it. In lieu of something more substantive, here's a video I just shot of Baby J playing in her exersaucer (or neglect-a-saucer as a friend of ours called it) and clapping.

And don't worry, I'll have an update on her kidneys for you as soon as I know something.

Bloggy Meet Up!

Today Mom, Baby J, and I met the wonderful Crunchy Granola, Politica, and Curious Girl. It was a lovely time and hopefully we will see each other again soon! As an ode to Phantom Scribbler and her pictures at meet-ups, we took a hand photo. Here it is.



From the top left (gold ring): Politca, Crunch Granola, Rev Dr Mom, Baby J, me, and Curious Girl

Really?

It is very hard to believe that there is something wrong with Baby J. I mean, maybe there isn't anything wrong but some defunct genes but it's hard to believe there could be something wrong with her. She seems so smart and healthy. Today is Hubby's birthday (Happy Birthday, babe!) and we went out to dinner with his dad and stepmom and Baby J. While we were there Baby J started mimicking her Grandpa clapping. He would clap and then she would clap. Over and over and over again. It's hard to understand how she could have any developmental delays. And maybe she doesn't but I am just having a hard time wrapping my mind around all of this. White marks = bad genes? It's terribly mind-boggling.

You know after you have a baby and you totally lose your mind? You can't remember anything? Well, I'm experiencing that times 1,000 these days. I can barely form coherent thoughts. I feel like I can't say anything intelligent to anyone and I'm really afraid I'm going to get into a car accident because I'm so distracted. I don't know how to process everything and I am trying to keep things as normal as possible right now since we have no reason to do otherwise. It's just hard. I want to keep some sense of normalcy but on the inside I'm a mix of sad, scared for my daughter, anxious and really afraid of what we are going to find out. I'm trying to keep up appearances so to speak but I'm afraid I'm not doing that too well. Maybe I just don't know what normal is these days.

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I do want to say thank you for your kind words. Part of the reason I blogged about this all early on in the process was because I have a feeling I'm going to need you guys. I have always really tried to be there for my friends but right now I feel like I just need people to be there for me. I don't have the mental capacity for anything else. Anyway, thanks. You all mean a lot to me.

Where do I start?

Where do I start?

Baby J has been diagnosed with a rare genetic condition called tuberous sclerosis.

Now that I have that out of the way, I guess I can start at the beginning. Baby J was born with a mark on her upper, inner left thigh. It sort of just looked like a white raised birth mark. Sometime down the road our pediatrician referred us to a dermatologist just to have it checked out. Between getting referred to the dermatology appointment and actually going I noticed some random white spots in different places on her body. They were pretty small and very hard to miss. One on her rib cage, another on the back of her right elbow, and another on the back of her left heel...there are more but those are some of the more obscure ones.

Two weeks ago we saw the dermatologist. Her opinion was that the white raised mark was probably just a birth mark. She was more concerned about the random white spots and referred us to the genetics center here. She said often they are nothing, but sometimes they are an indication of a genetic condition called tuberous sclerosis. That afternoon the genetics center called with our appointment time.

For the last two weeks I have tried very, very hard to not go crazy reading information online. I have only allowed myself to read the Tuberous Sclerosis Alliance homepage. I didn't want to read random scary stories so I did my best to only read this website and hope it was all for nothing.

Fast forward to Friday's appointment. We go to the children's specialty area of the hospital. We meet with a very nice genetic counselor and a very nice geneticist who specializes in pediatrics. They looked Baby J over and left the room to talk. They came back and gave us the diagnosis. With TS (or TSC for tuberous sclerosis complex to differentiate it from touret's syndrome which is often referred to as TS) there are a few different skin abnormalities that can arrise. When a patient has two of them, doctors typically feel it's enough to diagnose a patient with TSC. They felt her white birth mark and her white spots combined for this diagnosis.

Obviously I was extremely upset. Thankfully my husband was there too. I didn't absorb a whole lot of what we talked about next but the genetic counselor is more than happy to talk to me whenever I have questions. The next steps for us are for Baby J to have an MRI done to look at her brain, a kidney ultrasound, and to have blood drawn to do some genetic testing. We will also schedule an appointment with a pediatric opthamalogist.

What does this all mean and what does TSC affect? Well, we don't really know what it means right now. There is a wide spectrum of how TSC affects people. Some people have TSC so mildly that they are never diagnosed with it. Other people have tumors grow on a number of organs (eyes, kidney, brain, heart, etc) and have several developmental problems. TSC can also cause seizures. One third of cases are passed down from family while two thirds are just a random genetic mutation.

Our pediatrician called on Friday evening to check in on us. Baby J had just had her six month check up on Thursday so we had discussed what was going on and she knew how worried I was. She spoke to the geneticist after our appointment and they both agreed that Baby J seems very mildly affected at this point. The fact that she seems to be meeting her developmental milestones and has not had a seizure to date are very good signs. Right now all we can do is hope for the best and wait and see what the battery of tests show up. They are scheduled for the end of October.

I have been vaciliating between totally level headed and matter of fact about her diagnosis to totally upset and feeling constantly near tears. People live healthy lives with TSC and right now there's no reason to think Baby J will be any different. I have to keep reminding myself that Baby J isn't sick, she's still the same baby. She's had this condition since birth. She is still the same baby. Now, however, I find myself totally petrified that she's going to have a seizure and I'm not going to be there when it happens. Leaving her yesterday to go to work was probably harder than leaving her at daycare the first day. And having to continue to rehash this with people is not going well. We've decided to not tell everyone. We've begun to tell our close friends and family and part of me wants to tell more people because it feels like something that is defining my life so much right now, but it's just not the right time. We know very little about how Baby J is being affected by all this right now and if I'm going to tell everyone I'd rather have a better picture of what is going on. I feel like I'll be coming here more to get things off my chest about what's going on. I have so much more in my head but don't really know how to articulate it all right now. Everything still seems pretty surreal...