Bipolar mama

First I want to say I am so thankful for all of those people who have helped us out financially in the last few months. Bringing meals, writing checks, saving up change, giving us odd jobs, etsy orders, ect. We have truly been so blessed. I spent most of the morning paying medical bills. GEEZ it is hard to pay for stuff. I would think people would be eager to take our money but it is just a process! Plus I found out that my bank only allows 1000.00 to be charged to each debit card per day. I think this might be the one time it would have been easier to have a credit card so I don't have to call back on monday to pay more bills. Oh well. It is kinda amusing to me that my couch, and end tables didn't even cost 1000.00 bucks. Yet when I bought them when I moved into our first apartment I felt like I was spending SOOO MUCH MONEY! Haha. You live you learn right?!

So a short update on Em. She is still having seizures daily. I called her neurologist yesterday and they increased her meds again. I am growing weary of these daily seizures. They really are just heartbreaking and taking a toll on this mama. She is such a sweet girl and it just sucks that she has such a hard road to travel. We are trying to stay positive but to be honest I just feel tired and heartbroken. It is kinda an odd thing to have a kiddo with such a chronic problem. Because having a baby brings so much joy! She is so happy and her smile just lights up my world. She is funny and thinks I'm funny and we just laugh at each other a lot. She loves to play and snuggle and all those things are so joyful and then we have the seizures. And those just suck. I feel so bipolar because I live in a world of joy & heartache. I can be laughing at my cooing child one second and ready to burst into tears another because she is having another seizure and that makes me sad.
People always ask how she is and I try to focus on her being good. Cause she is. I know if she could talk she would say she is good. That her life is mainly happy & fun and that is just interrupted several times a day.
She gets weekly physical therapy and I was impressed with how good she did yesterday. I love our therapist and she gives us tons of ideas for how to help her get stronger and to hit developmental milestones. She has been pretty sleepy today but did sit (when I say sit I kinda mean slump/slant) in her bumbo for a bit and bat at her toys. But that is progress none the less.
Please pray that her increase in meds wouldn't make her overly tired so she has good awake times to play and develop. And pray that the increase in meds decrease her seizures. We have a really good week last week and the week before where she was only having 1-2 seizures a day. I would love to get back there or to ZERO (oh God please let us get to zero!) but this week she has been having 8-10 a day. Which seems like a lot to this mama.
I guess that is all for now.
Love, La


  1. We feel your pain, sorry, and joy. This thing called "Tuberous Sclerosis" came into our lives uninvited for sure! I know what you mean when you say you can be so happy one minute and so sad the next. The last two years of Mason's life have been two of the happiest, yet two of the saddest. As nurses we are trained to "fix" people. We are given the diagnosis and treatment plan and we fix our patients. Then we send them on their way. The frustration comes from not being able to "fix" our own babies. That's what really makes me angry. I want to fix my beautiful little boy. I want you to know that Mason has not had a noticeable seizure in about a week. With his surgery and Depakote he is moving right along. No more helmet. No more falling down. We can leave the house. Hang in there....Your TS family is here when you need us. Prayers to your family. Tom, Denise and Mason Breen

  2. It does get easier I promise! Kierstin had daily seizures for the first two years of her life and even up to 50-100 seizures per day at her worst point. Surgery was her miracle and she has been essentially seizure free since surgery. There are so many options today that weren't available ten, five and even two years ago. I have such high hopes for Princess Emmaus and Prince Mason. I know that they will soar!~
    We prayed for so many years that Kierstin would walk, talk and be a typical kid. Now she runs, skips, climbs, yells, screams, fights and hollers.....And she has a "boyfriend named Justin Bieber" so my advice to you both....Be Careful What You Wish For ;) But on a serious note, please lean on your TS family. We are always here for you if you need to vent, have questions, or need a shoulder! Hang in there!~
    Amy Dublinske

  3. I love the way you are being supported by these people who really understand your situation and have perspective .I also know that I love and admire the ballieu family and pray for you in the good times and the hard times. You are real, you are authentic and that is good. Keep sharing your life. Emmaus you are one blessed little gal to have such parents .
    Love you, nancy kahler

  4. i love you. and i second kathleen...praying for zero with you!


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