FINALLY...I have a chance to update. Life has been busy and the kids have all been sick. Since the beginning of March, Sophie has had RSV and two ear infections, the other two had strep back to back. I am off FB for Lent so that gives me much more free time. You know, as much as I can get with three kids!
Kayla turned SIX a couple weeks ago and had her first real sleepover with three friends. It is hard to believe how big she is. She is doing great in kindergarten and is starting to read really well too. She can read Hop on Pop to us and is so proud. She still prefers writing and drawing to reading, which pains me b/c I am such an avid reader, but she is also really good at drawing. I think she struggles with her place in the family lately, wanting to be a big girl, but also wishing she could be one of the little girls too. We got her a DS for her birthday so Mike is looking forward to introducing her to the wonderful world of video games. :)
Madelyn loves preschool and has acquired Kayla's Leapster lately and loves to play the Tinkerbell game. She can now write her name as well as most letters in the alphabet. This kid is too smart for just being 3 1/2. She amazes me more each day. She is your typical preschooler who melts down about things sometimes, but she is also very independent and entertains herself so well. She loves detailed things like puzzles. She tries so hard to keep up with Kayla, but also loves playing with Sophie.
Sophie is doing amazing! She is still seizure free and we've weaned her off one of her seizure medicines completely with no problems. She is still on the other two, as well as a heart med, and recently had to start on Zantac since we've determined she was having silent reflux. She was refusing to take her bottle off and on for weeks as well as having a chronic red throat, but no strep. Three days on Zantac and she was back to her normal self. We're hoping she can wean off of that at about 9 months. I could use less medicine in her life!!! Even with the RSV and ear infections she is such a trooper. She's been a happy baby through it all. Ever since weaning off of the one seizure medicine we have seen her personality just explode. She laughs so much, babbles, reaches for everything, fusses when we put her down...all the normal things that 7 month olds do! She is sitting well now and hardly falls over anymore. She still has some weakness in her left hand and arm, but we are continuing to work with a physical therapist through Early Intervention who comes once a month to our house. She gives me things to work on with her to help her stay on track milestone wise. So far she seems completely on track except for the left arm being a little behind. But for a baby who had brain surgery 4 months ago she wows everyone with how on track she is! Her new favorite thing to do is EAT. She struggled in the beginning with baby food, but after a couple weeks she got the hang of it and now eats more than I remember the other two eating at this age! She is a lot of fun and I enjoy her more and more each day. It's hard to believe she'll be 8 months old on Monday.
So I have some news about me. No, I'm not pregnant...we are DONE DONE DONE. Did I say DONE? Anyway, back in December I had blood drawn for genetic testing. I did mine and Mike was going to get around to doing his sometime after. Well, my test results came back questionable for Tuberous Sclerosis, so Sophie's neurologist advised that I have an MRI on my brain and a kidney ultrasound to look for tubers which would indicate that I carry the gene change that would make a clinical diagnosis. I had them done and while my kidney ultrasound came back fine, my MRI showed three tubers on my brain. Now, don't worry! This really doesn't make a difference for me since obviously I'm fine and living a normal, healthy life. What it means is that we now know that Sophie got this from me, and I could've got it from my mom or dad, it could've been passed down for generations or it could've started with me, who knows. I won't have to have any further testing unless I start having neurological issues, which since I haven't so far no one expects me too. What's interesting is that I had mild seizures as a child that I was medicated for and eventually went off the medicine and they never happened again. So this could be the explanation, or maybe not. So Mike no longer has to get tested since my results came back this way, but we do eventually have to get Kayla and Madelyn blood tested just so they'll know their status for the future. If you have TSC there is a 50% chance you can pass it on to a child so they need to be aware. And since they are healthy and developmentally normal, if one of them had it they would just have to have a kidney ultrasound every 5 years or so to look for tuber growth, but if they didn't have any by their 20s they would be clear of them...like I am.
It's been a whirlwind of information which I thought would devastate me. Really, it's been the biggest weight off my chest. I no longer have to think, "what if I have this" b/c I do and if we hadn't had Sophie I wouldn't even know. Having Kayla and Madelyn tested makes me nervous, but I'm glad that they will know their status with it and will never have to go through what we've just gone through with Sophie unprepared. The best part of these results is that the feeling of resentment that I've had toward Sophie since her birth, with all the stress she's brought into my life, is GONE. I feel like that sounds horrible that I've resented my baby b/c at the same time I love her so much, but it's been the hardest thing I've ever gone through and couldn't help but thinking "if only we hadn't had a 3rd" or "what would life be like if we'd had a baby without problems" but now that I know that she got this from me it's like I know it's not her "fault" not that it ever really was. I feel like this doesn't make sense, but it's how I've felt. Mike and I are secure in the fact that this information is just that...information. It really doesn't change anything. Sophie has TSC, I carry the gene for it but am not affected and we just move on from here. If anything it gives me living proof that you can have this condition and live a completely normal life! I'm living proof!!
Hope everyone is doing well. We are blessed to be in a place of peace with everything in our lives. God continues to lead us down our path together and we trust in His plan for us. We couldn't have made it through the past year without all of you. Our family and friends are the biggest blessing in our lives!
