Teag’s Progress – May Round-Up

This month was filled with ups and downs.  Well I guess only one down, which was pretty big…but sandwiched between two BIG ups, so we’ll try and focus on that.

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Teagan looking cute on the deck

Up number one…we’ve figured out a drug to stop her seizures!!  I haven’t seen one in at least three weeks now.  We started her on Kepra just after Christmas, which I believe is pretty regularly the first drug they try on kiddos with epilepsy because it is often successful and has the fewest side effects (common ones for seizure meds are tired, cranky, loss of appetite, loss of balance).  The Kepra didn’t cause any side effects…it also didn’t work :-(.  She had fewer seizures, and her doc thought they were less intense – but they only lasted a split second anyway (thank goodness), so I really didn’t see much of a difference.  We got as high as 4 ml twice a day before deciding this wasn’t going to cut it, so we started on Depakote.  For a while, we were on 8 ml of Kepra a day and 5 ml of Depakote, and the seizures stopped – and Teag was CRABBY.  If it was possible for the eating to get any worse, it did, she had NO interest in food.  Screaming every night at dinner.  So, we took the Depakote down by a ml a day and…finally…thankfully…she was happy again AND we still haven’t seen a seizure.  We’re now weening off the Kepra – down to 5 ml a day, with 4 of Depakote.  By the end of June, we’ll be done with Kepra all together, and my baby’s body will no longer be a chemistry experiment 🙂

Up number two…we had our six month appointment with her geneticist, Dr. Mendelsohn, who is one of the best in the field from what we hear.  She was THRILLED with Teagan’s progress, couldn’t believe that she was only 18 months.  This up is kind of bitter-sweet – I get so excited when doctors, therapists, etc. are so impressed with Teagan…then I feel bad, because if they are that impressed with her progress, that means there are lots of other children who are dragging their expectations down.  Such an unfair world :-(.  We went to the zoo last weekend, and as we were leaving there was a 12 or so year old special needs child having a meltdown.  I felt for the child, as well as for the two women trying to calm her down…I wanted to tell everyone around her to stop staring and give them their space.  I suppose these are the type of feels Joel and I will have now that we didn’t have before.

On that depressing note, the downer…Teagan’s eye has started drifting again :-(.  It looked great for a week or two after surgery, and then one morning I was giving her her before daycare milk in her high chair, and noticed the drift was back.  I was hoping it was just because she had recently woken up and was very tired, since the doc said when she was tired or sick we might still notice it…but it hasn’t gone away.  There are times her eyes look great, but Joel and I both feel that she is probably going to need the surgery again.  Such a bummer, my poor girl.  Her doc says the healing process is 3 months, but I just can’t believe we would still see drifting this often :-(.  That makes us very sad, good thing we have…

Up number three – WALKING!  OMG, so fun and exciting.  The most steps we’ve counted so far is 13.  She’s been taking 3-5 for two weeks or so now, and I was itching to announce it to the world via Facebook…after she walked half way across the living room to her babysitter (Miss Tippy!!) last Saturday night I decided that was good enough, and I could call my girl a walker.  So happy about this.  It is so fun to watch her gain confidence and even take pauses in her steps and change directions.  She holds her arms up in the air (for balance I assume), Joel and I say she’s pretending to be a zombie.  I wonder if she likes turtles.

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Zombie walking Teagan

Sessions with her therapists/teacher have been great – we’re working on a lot of words now.  We have a bag of everyday items that we go over twice a day – cup, spoon, shoe, book, etc.  She LOVES books…my parents babysat her while Joel and I went to our friends Lauren and Rusty’s wedding, and my mom got a kick out of her always taking the book you were trying to read to her and pretending to read it herself (she flips through the pages while babbling).  As far as OT goes, her six month meal goal is to feed herself half of every meal, which would be AMAZING.  She did a great job tonight…hopefully we’re finally on to something!  Kristin (her teacher) commented last Friday on how she seems much more “with it” – I’m not sure if this is due to the decrease in meds, or just because…but I’ll take it!  She is so sweet and happy.  My favorite time of day is walking up the stairs when I get home from work, because when she sees me, she is so happy she starts laughing.  Or maybe she thinks I’m funny looking ;-).  So in love with my girl ❤

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Petting the goats – she LOVED them – at the MN Zoo

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11 responses to “Teag’s Progress – May Round-Up

  1. Pat Reese

    I am so happy to hear how well Teag is doing!!!! I’m sure a lot of that has to do with you & Joel!!! Two very special parents.

  2. I’m very glad to hear that Teagan is doing well! I’ve been lurking around on your blog for quite some time, and was happily surprised by this new post. I have a severe special needs brother, and following your journey is the one palliative I need when I’m feeling hopeless. Thank you!

  3. Jack Silverman

    Kathleen,
    Nancy Mendelsohn is my wife’s best friend, she is a world renown genetisest you are in great hands!

  4. Nana

    She is a joy to be around.

  5. Jesse Sumstad

    I really enjoy reading this every couple of weeks. Your blog is the first I’ve ever regularly read.

  6. Pingback: Comfort Bake Yum | What2Cook

  7. Nicole Newfield

    A walker! So fun! Can’t wait to see her again soon! Great pictures!

  8. Keith

    So happy to hear all your “ups” Kathleen. You guys are amazing parents.

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