Ok?

Alright yesterday we finally got some results! Zoey was a bit naughty and wouldn't sleep during her EEG. That means her EEG wasn't as clear as it should have been. However, she definitely doesn't have infantile spasms. That is a good thing. They are not sure if her seizures are related to her sickness a couple of weeks ago or if now it's something else entirely. Whatever it may be, the ones she is having are very short and not harmful to her brain. Meaning she shouldn't lose anything she has learned like she did with infantile spasms. Yay! That was my biggest concern since she has been doing soooo well! The plan is to wait for 3 weeks for our next appointment and see how she does. If she has more seizures she will go on meds, but if they stop then we keep plugging away like we have been. I intend to look into the meds they will put her on so going into the appointment I will already know what I want to do. Good news is she hasn't had any seizures since Sunday so gotta keep going!

Bummer

I probably shouldn't write a blog when I feel this way, but unfortunately for everyone this is my therapy.  A way to clear my mind and maybe even get some sleep tonight. Zoey is having something going on. Spasms or seizures? We will find out hopefully tomorrow or Wednesday. Another EEG on the way for my baby girl. I knew it was a possibility, but I didn't think it would only be 3 1/2 months of being spasm free. For a little while I have seen things that made me wonder if she was having them or not, but last night was a flashback to those dark days. She woke up from sleeping and back to back to back 10-15 little body shudders and eyes unfocused. My stomach has dropped and I feel detached. She has accomplished so much these last few months! She has pretty much caught up to her age. All except the crawling which is coming soon! Now the uncertainty sets back into place. I don't want to do this again. I don't want to watch her suffer while I just have to sit and watch. I just want to either cry hysterically into my pillow or else punch a hole in the wall and I'm not sure which would make me feel better. So instead I'm asking for prayers and happy thoughts to be sent zoeys way. Long days ahead with tests and decisions.

sicky babies

Wow have the last few weeks been stressful! I know I am a bit of a germ freak when it comes to my kids. Being a first time parent, I was horrible. I don't think Joseph and I left the house for the first 6 months of his life. Over protective? oh very. However for the first 6 months of his life he didn't get sick. Not even a cold. Once I started going out, the colds came. Now with my second child, I wasn't as protective of her and the outside world until that horrible June day when she was diagnosed with infantile Spasms. Then it was germ phobia again. Only this time much much more serious. Her immunes were down, and she couldn't even get a flu shot to help protect her from the flu for the winter. She couldn't even be by people that have had their vaccinations recently! We became hermits again in our house. She had a few colds, but nothing serious. Finally, we were given the ok to go back out into the world. Within 2 weeks my little Zoey started with a fever. Small at first, I didn't think too much of it. Then she grew hotter and hotter. We went to the dr. office and she was up to 102. Within an hour it was up to 105, and was taking Tylenol and ibuprofen. I have never seen a temperature that high before. However, the thing that scared me the most was the worst thing that could happen. seizures. It started out as her little arm twitching, but as her fever grew the seizures grew worse as well. Luckily, we saw a Dr. who know all about infantile spasms and told us that these babies are more susceptible to having seizures with quickly rising temperatures. Good news in a way, but I didn't like it still.
After going to the hospital and getting blood work and an x-ray, we found she has a bacterial infection. At least antibiotics will be able to help this time! I am now back into the worry-about-everything phase again. Any time she stares at something, is she having a seizures? when she stops chatting, is she having one? I was finally getting over those concerns and now I'm back to square one. She has caught up so much since she has been off the medication! She is all caught up in her vision. Even her physical therapy is going great. She is doing exactly what she should be. The only thing we need to get her doing is crawling and then walking! She is so very close to crawling. She is up on all fours and rocking back and forth. The last couple days she is even moving her arms...just have to get the synchronizing legs going and she will be on her way! What was the point of all this you may ask? a couple of things. 1) for all those moms out there with the same germ phobia. Do what YOU think is best for your baby. Doctors know books, but you know your baby. I'm quite happy to keep my babies healthy as babies. They have their whole life to catch colds latter and though it's not fun when they are sick no matter what age, at least they can take medicine to feel better. Just my opinion, but it works for me! Also my one big regret dealing with Zoey's struggles has been that I didn't listen to myself. James and I both felt like we should try to ACTH medication at the beginning. However, talking to Dr.s and their opinion being that she would be better off with Vigabatrin, we caved and did it their way. If only I would have listened to my mommy instincts Zoey would have had 2 more months being seizure free.  If only is a dangerous thing to have floating around in your head. Sadness can consume you. You have to fight it off and be happy in the NOW! Zoey is beautiful, and happy. That's what's important. 2) Everybody has their own opinions. That's what makes life interesting. No one is the same. We don't think the same way. It's wonderful to get advice from others because sometimes you feel as though you have done everything, but a different perspective gives you more ideas. Saying that, don't judge a mom for being the mom. I understand that sometimes I am being overprotective, but seeing my past, it's what's best for my kids. Not YOUR kids. My kids.
Sounds a bit mean, but it's not meant to. I am reflecting on things that have happened during my years as a mom, and these were things that I struggled with.
Now onto happier things! We are trying to sell our home.. trying, but no luck yet. We wont be going far, just down the road, but it will be good to get a bit more room. Still we aren't in a rush and we love our house and all the memories so whatever happens, happens. The kiddos are so funny together and love to play with each other. I have such opposite kids! going into our well child checks, Joseph is 97% height and 95% weight. My beautiful brown eyed boy. Zoey on the other hand is 5% in height and 3% weight. Bless her she is tiny. Tiny, but healthy. The dr. isn't worried about her because she is perfectly proportioned and thinks she is lucky enough to get the short genes from her mom.. All in all things are getting better now, sickness is going and hopefully we will stay that way.