Hannah’s neurologist is on vacation, so we have been working with one of her coworkers this past week. With Hannah’s increasing seizures, confusion, and irritability, Dr mo thought it would be a good idea to start Hannah on a new seizure medication called Keppra. She started taking it tuesday morning and has actually seemed to improve quite a bit! She hasn’t had nearly as many seizures and while she is still pretty irritable the confusion has seemed a lot better! She has laughed several times today, which is always a blessing to hear! Dr mo told us to expect a call from Dr Hall on monday when she returns from vacation as he is concerned their may be another small bleed in Hannah’s brain. As of now we will be flying to Denver next week where she will be admitted to the children’s hospital for more testing and imaging. Please continue to keep Hannah in your prayers! I would also like to thank everyone for all their prayers, thoughts, and donations through Hannah’s illnesses. We are almost a fourth of the way to having Her helmet payed for!!! 🙂
Hannah has been really out of it the last couple days and has had multiple seizures. Ever since yesterday morning she has either been screaming and holding her head. (you can tell it hurts) or just completely out of it. I took her for a bike ride yesterday and was pushing her along when i looked down and noticed her head was down on the handle bars, arms and legs dangling and not responding when i called her name. I quickly picked her up and she looked at me like she had no clue what was going on. Then she sat up a bit, looked around and cried. I walked around with her for a bit and she started to get back to herself again. We had about five experiences like that yesterday and last night she was just inconsolable untill about 10:00pm. She woke up four times through the night crying and has been crying all morning. Still waiting on the doctor to call me back but i know waiting for her next scheduled appointment is not an option. I want her seen and i want them to help her feel better. She is so little and i hate seeing her in pain/discomfort! My heart is heavy for her right now.
It was the most beautiful sound i’ve ever heard! I have been trying so hard to get her to laugh for the last 6 months and nothing. I would tickle her, make silly faces, play peekaboo, anything i could but she wasn’t amused. She started “fake laughing” a few days ago to try and make me feel better. lol. I was acting so rediculous for about an hour trying to make her laugh and then she did a half smile with the most hilarious fake laugh i’ve ever heard. Then wen’t back to being serious . “ok mom, i laughed now you can stop.” I have kind of let it go for the last few days because the fake laugh was awesome enough but then last night after her bath, her brother kyle was playing with her while i was on the computer and i heard the deepest most beautiful laugh come from her. I was so happy i cried. I was starting to wonder if i would ever hear my baby girl laugh! God is great!
I brought Hannah in for an adjustment on her helmet and the orthopedic doctor noticed her head had become more swollen, so he took some measurements. In less then two weeks her head has grown over two centimeters. He fixed her helmet to make her more comfortable and encouraged me to call her neuro immediately.
I called as soon as i left her appointment and left an urgent message to have her call me back. well i just recieved a call from her saying that it should not have grown that fast and they want her to go back to denver for some more imaging of her brain, and i should be getting a call the neurosurgeon before the end of the day.
So now we are waiting no so patiently and praying the measurements were wrong. Please say a prayer for my baby girl. She’s been through so much already and i was really hoping she wouldn’t need surgery.
We started noticing something wasn’t quite right with Hannah around two months old when she would stare off blankly and we couldn’t get her attention for up to a minute. It didn’t matter if we waved our hands in front of her face, snapped our fingers, or yelled her name. She was just gone.
Hannah would also have spells almost daily where her legs would turn purple and start to swell. She would scream in pain and it took up to an hour at times to calm her down and her legs would go back to their original size and color. She would get little purple spots all over her legs where blood vessels burst from the pressure.
Hannah’s pediatrician would try to reasure us that nothing was wrong with hannah and that it was “normal”. It took untill hannah was seven months at her well child check up for the doctors to notice hannah was developmentally delayed and her head was growing too large to fast for them to send us immediatly to the childrens hospital in Denver, co.
While we were there Hannah saw a neurologist who did a phisical exam and ordered a cat scan. The cat scan showed increased cerebral spinal fluid around her brain and possible bleeding on the right side so she was sent for an MRI the next morning. The results from the MRI also showed increased cerebral spinal fluid and confirmed bleeding on both sides of her brain.
Hannah was admitted with the suspician of shaken baby’s syndrome and had several tests and blood draws that night. It only took a few hours for the doctors to rule out shaken baby syndrome and suspect gluteric acidemia type one and hydrocephalus. Hannah was realeased after one week with the diagnosis of External hydrocephalus, brachyacephalus, small hole in her heart, and possible gluteric acidemia type one.
Over the next month and a half and several tests and appointments with several specialists hannah has also been diagnosed with raynauds disease and mild developmental delays and has been going to physical and occupational therapy several times a week and has gotten a helmet to correct the brachyacephaly. Hannah will be going to colorado’s children hospital several times a month to see her doctors and get treatment.