Thanks to all of you who said prayers for Miss Kylee on Monday. It was a LONG, HARD, EXHAUSTING day for her but overall went well. The past few months she has been dropping her head occasionally, it's a very quick drop and back up again. When she first started it, I thought it was just a "new thing" she was doing but when her therapist and developmental ped saw it, they immediately said we needed to have things checked out just to make sure. There's a chance that it could be nothing, but given her circumstances and history it could very well be something to worry about like seizures.
Kylee, happy as can be when we arrived!
She had an EEG and MRI scheduled and what I was nervous about was the MRI because she had to be "put under". Her EEG was done first and let me tell you, it was TORTURE. We had to hold her down while she screamed so they could attach probably 30-40 electrodes (seen at top left in picture) to her scalp. Once they finally got her hooked up and left her alone she passed out which was ideal to get a good look at her brain. Bret and I were able to stay with her the whole time, but it was soo hard seeing her that upset for that long of a time. I've seen our babies go the A LOT of stuff in their little lifetime, but this was hard for me, I guess because she's older. I told Bret once they get a little older and have to go through this stuff, after the appointment we will take them to the store and let them pick out whatever toy they want (ok maybe any toy at the dollar store ;)). They watched her brain activity for about 30mins and then woke her up. When I say "woke her up" it wasn't a sweet little voice saying her name softly. They used what looked like a book light to wake her up, with a series of bright flashes slow then fast then slower then faster... it was like the paparazzi to the 10th power. Needless to say as she woke up she was TERRIFIED, had cracked lips and a dry mouth from screaming, and still very tired.
She went straight from the EEG to the MRI. The anesthesia put her out within 20seconds and the MRI only took about 20minutes. When she woke up she was not only scared but mad and ONLY wanted her Daddy, if I even looked at her she screamed. Within an hour we were released and headed home. We should be contacted this week to hear the results, keep praying!Checkin' out her "Good Patient" sticker and glad to be home.
Now for Brody! He has been doing well with his cranial helmet, I realized it was 6 months ago that he got his first one which is crazy but we have seen MAJOR MAJOR improvements! He will be fitted this week for his third and hopefully FINAL helmet and should be done within just a few more months!!!
Brody at the doctor getting his helmet adjusted.
Love this one of him looking at one of his progress sheets! "Look at those results!!!" lol
Thanks again for the comments, encouragement, texts, and prayers for Monday! They were greatly needed and appreciated!
Poor little Kylee -- she had a rough day all right! I will keep both of them in my prayers.
ReplyDeleteI will be praying for you! Our girls have not had to go through nearly as much as your sweet babies have had to it seems but I know how you feel from the parents perspective and to think about how little they are and how much they have already faced in such a short time! I have to take one of our girls to a pediatric neurologist this afternoon and am scared of what could be.
ReplyDeleteHow sweet is that pic of her with the frog. And those progress pics are amazing! Your babies are just precious!
ReplyDeletePrayers for your sweet girl!
ReplyDeleteI know it's hard, but it has to be done. She is beautiful little girl and we are blessed to have her in our lives.
ReplyDeleteOh my goodness !! What brave babies you have...she is just beautiful !!! Brody's pictures are just priceless as well....Blessings to you all...we will def. keep you all in our prayers....
ReplyDeleteI'm a loyal blog stalker who hasn't commented before. First of all, your babies are gorgeous! Second, I have a Brody too! Also, I just wanted to let you know that I kinda know what you went thru with Kylee today. My nephew has seizures & has had to be "hooked up" to all those same monitors 5 different times in his short 3 years. It's complete & total torture for both him & us. Hopefully, you will only have to do it this one time. Praying everything turns out great for Kylee. Thanks for letting me 'stalk'. :)
ReplyDeletePoor little Kylee -- one of my chix had to have an EEG too -- and the only way to get her to go to sleep was to lean over her & nurse her! I felt like the world's biggest goob. About 2 minutes into the nursing session, she was out like a light.
ReplyDeletePraying for FANTASTIC results!
Poor Kylee! We've had to take our little Bryn in for a few check ups on her heart murmur and it's torture to see her scream her little lungs off, when they stick the electrodes to her and just do a sono on her heart. I can't imagine going through some of the stuff you've gone through. I'd be a big cry baby!
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