Katelyn Grace was seizure-free today for the first time in well over a month!
To give you an idea of what an improvement this is, her worse day was last Wednesday, the 5th. She had seizures at 2:20am, 4:20am, 6:20am, 8:20am, and then randomly throughout the rest of the day, making a total of about seven or eight.
The Improvement
We saw an osteopath in Atlanta later that day, and things have gotten better since then. At that time, we also started a few other remedies, so it is hard to pinpoint exactly what single thing or combination helped the seizures. We just want to get rid of them! For the next week, she had two seizures a day: one soon after waking in the morning, and another around 6:00pm. Then, she started missing either her morning or evening seizure. Today, she didn't have one single seizure! We don't know what will happen tomorrow; she could have more, she may not have any at all.
The Seizures
Each seizure - or set of seizures - lasts about three or four minutes and consists of between ten and thirty individual absence and salaam seizures. She gets a glassy look in her eyes and doesn't respond to her name or to visual stimulation (absence seizure). Then her head goes back and there is an involuntary sudden contraction of her arms, legs, and head towards her middle (salaam seizure). She'll go back to normal and fuss for a few seconds, then she'll get that glassy look in her eyes and her head will go back again.... The first few are rather mild, but they grow more violent towards the middle and then slack off towards the end.
The Medical Opinions
The doctors say that these seizures are not enough to cause permanent brain damage at this time, but while she is having seizures, and while her brain is "spiking" abnormally in between, every two to three seconds, that area of her brain (which is quite small) cannot do what it needs to be doing. Also, it is not good for her to develop a pattern of seizures.
Thank the Lord!
We are so thankful that she is developing well in spite of everything. Many special needs children are unable to move at all for the first years of their lives. Others spend days, months, even years in the hospital. Yes, we have much to be thankful for!
Her Development
When she turned six months (she is now seven-and-a-half months!), we took her to the Down syndrome clinic at MUSC to check her development. They asked Mom countless questions about how she responds to this and that, tested Katelyn Grace's tracking abilities, and had her grab various objects. In so many areas, she was ahead of even "normal" babies! Her muscle tone was at 4-1/2 months, which is still ahead of most Down syndrome six-month-olds.
We believe that the hours and hours we are putting into her therapies are paying off!
Katelyn Grace is such a happy, contented baby, and is only fussy after her seizures or when her allergies (which we're still trying to figure out) are bothering her. She recently discovered that she has an extremely loud voice, and has been putting every ounce of her strength into ear-splitting yells and shouts. She loves "talking" to us! One of her favorite things is for one of us to take her into a quiet room, lie on the floor beside her, and just talk quietly to her as we play with her hands and tickle her feet. She watches and listens to us intently.
Thank you!
Thank you so much for your prayers for Katelyn Grace. It is such an encouragement to Mom, especially, to know that people all over the country - all over the world! - are praying for our precious little baby.
Please continue to pray daily that she would continue to progress and for wisdom for Mom and Dad. Thank you all!
