The Verdict

I guess like that other post, I don't really know where to start.

I got a phone call yesterday from the genetic counselor confirming that Baby J really does have tuberous sclerosis. It was a very surreal phone call. I was at a Carter's outlet exchanging some clothes when my phone rang. I had just left a message for the other genetic counselor and that's who I thought it was when I answered. I didn't expect to actually be getting news right then and there. I just thought I was getting a returned phone call. So there I am wandering around Carter's, carrying Baby J in her car seat, which is not easy these days, trying to fight back tears and digest what is being said. You know, those medical type people say things in the vaguest ways sometimes. She said, "Her blood work came back positive for a variance." Does that mean she has a variance or that she could? Well, it means she does.

There are two known genes affected TSC1 and TSC2 (original, I know). Baby J has a mutation in TSC1 which is the gene affected less often. It also seems to have less severe implications. I didn't learn all of this in Carter's. I got off the phone, quickly made my exchange, and bolted to the car where I had a good cry and called Hubby. We talked for a few minutes and then I had a good cry the rest of the way home. I pulled myself together after getting Baby J down for a nap and called the genetic counselor back. I just needed more info.

I guess if there is a best case scenerio for someone with TS then Baby J has it. She has no tumors anywhere that we know of (just need to do a pediatric opthamologist visit) and seems as healthy as can be. We're fortunate to know about her diagnosis now so we can be proactive when things arise. Yeah, it's really easy to type all that now but I was a mess about it all (and am still a little). I think we all want our children to grow up with every opportunity and I'm just scared that this will somehow keep Baby J from having a normal childhood. It certainly hasn't so far, but I do not deal well with the unknown and I just want what's best for her. And I know it's so far in the future but I think about when it's time for her to have kids. And what if the chance of her passing this on keeps her from having kids when she really wants them? I know I'm jumping the gun but I can't stand the thought of it all.

Also, all of this really makes me think we won't have more kids. I just don't know if I can go through all of this with another baby. It's such an emotional roller coaster. Right now we don't think either Hubby or I have TS. Two thirds of cases are new mutations in the genes. But if we want we can get looked over with a wood's lamp (basically a black light) to see if we have any white spots. Nearly 100% of people with TS have the white spots. If we don't have spots then it's safe to assume we don't have TS. I always thought we'd have at least two kids so part of me has been in mourning a little over never being pregnant again or having a newborn or all of the wonderful parts about having a new little baby. Again, jumping the gun. We still can have kids if we want. Neither of us are ready to make that decision just yet.

And silly me, I really let myself believe that this whole diagnosis was a fluke after Baby J's MRI came back clear. To me that was proof that she was fine. And she is fine, don't get me wrong. But I think it all came as such a shock to me yesterday because I really thought the doctors were wrong. I wanted them to be wrong so bad. So now I have to deal with her diagnosis all over again to some extent. It's going to be a long road for me and for us, I think. But ultimately Baby J is the same baby she's always been. She's sweet and funny. She's a total ham and so smart. I love her more than I could've imagined.

To leave on a happy note, here's a couple pictures from yesterday when we were getting ready for a walk to the store...





And a couple more of her playing with her books...

A No Good Terrible Very Bad Day

Today has not gone well...

• I woke up and forgot I had to work today. Luckily having a baby means you don't get to sleep in that late even if you have a nice husband who gets up with the baby.
• I dilly dallied too much after waking up late and had to run out of the house for daycare drop off and work.
• It snowed this morning and the roads were icky. I hate snowy roads.
• I nearly rear-ended a van on my way to work because of teh icky roads. I was talking to Husband at the time and he said, "Maybe you should get off the phone and pay attention."
• Right because I nearly hit a van because I wasn't paying attention. It had nothing to do with the roads.
• I hung up on him.
• He called back and I hung up on him again. Go me.
• At work we had a leaky pipe out front that the chef/manager decided he would try to fix. Right before service.
• It didn't work and he only made it worse so we had no water for the coffee pot, soda gun, or sink we use to fill up the water pitchers. Awesome.
• I had to go to the store to buy soda.
• We had to boil water to bring to the coffee pot and for hot tea. It was not so fantastic.
• Luckily the plumber was able to come but not until lunch was almost over. But he fixed it in like five minutes. Thank you!!
• The whole pipe thing wouldn't have been a big deal but we were busy. Annoying.
• I picked up Baby J from school and brought her home only to have her be incredibly fussy. I think she probably needed another nap but the timing of me picking her up was off for her. She hardly ate any dinner (oatmeal and peas and rice baby food). I did give her a bath and get some cuddle time before bed though.
• The diapers that I loved so much have been leaking for weeks now. I think they have detergent build up which is really annoying because I bought expensive detergent that I thought was recommended. I bought something else to try now and hopefully I can fix the problem so we can keep using them.
  
• I did get some paper work done that I needed to take care of tonight though. I need to put my clothes away/organize my over flowing dresser and do some dishes but I really don't feel like it.
• I better at least do the dishes or Hubby will do them when he comes home and I'll feel bad for not taking care of it.
• Sigh...I hope you've had a better day than me.
  

Barack the Vote!

Even Baby J got an "I Voted" sticker! Hope you have a wonderful Election Day!

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:



____________________________

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.