Friday, January 22, 2010
Please remember my darling lovely daughter Sophia who died in my arms 3 years ago today.
She was almost 4 years old. She spent 5 days on a ventilator before her heart gave out after suffering respiratory failure from Human Metapneumo Virus.
Tuesday, January 19, 2010
I have had the privilege and joy of holding my beautiful baby boy in my arms for 2 years! I pray that I will have at least 2 more years with him!
I am in awe of him everyday! He is the sweetest most loveable boy and I am so honored to be his Mommy!
Thursday, January 7, 2010
Brosie's 2nd birthday is right around the corner.
His birthdays are very special as most children with Taybi-Linder Syndrome die before their 1st birthday. Sophia almost made it to her 4th birthday. She was the 5th oldest child with this syndrome (of the 34 reported cases throughout the world since it was identified in 1968). The oldest was 6.
We are having a birthday party for him at 2 p.m. on Sunday, Jan. 17. Let us know if you'd like to come.
Sunday, January 3, 2010
Sleeping at night has been an ongoing struggle for Ambrose, as well as for Sophia. Blind children often have sleep disorders as light is what sets our internal clocks.
Sophia eventually settled on a pattern of sleeping from about 10 pm until 3 am. Then woke and needed suction repeatedly for about 2 hours. She would stay awake until about 9 a.m. then sleep until around 2 p.m. Her neurologist said "sleep hygiene" (making them stay awake all day),was the most effective treatment, but there was no waking her when she wanted to sleep, or lulling her to sleep if she wanted to be awake. Eventually I tried Melatonin at night which helped her to sleep a little longer overnight.
I tried Melatonin with Ambrose last year to no avail. Ambrose will occasionally sleep all night, sometimes even for a few days in a row. We will hope maybe he will stay on this schedule but then he will switch it up and stay awake all night for a few nights, or sleep half of the night. His only consistent sleep habit is falling asleep around 10:30 a.m. until about 2 p.m. He does usually seem to get enough sleep cumulatively, just not consistently at night. Then I feel guilty sleeping. I wake up frequently to see if he is still awake and kiss and stroke him. He's laying awake bored and lonely, then sleeping all day and missing lots of interactive time.
A few months ago I read an article in Future Reflections, a magazine for parents and educators of blind children, about a girl with this problem whose doctor recommended using a light therapy box. She used it for a half hour each morning and from the first day began sleeping through the night. If she missed a day, she didn't sleep.
I began researching online and found numerous references, and positive customer reviews about them helping with sleep regulation (not specific to blind people) as well as season affective disorder. It is supposed to replicate sunlight and wake you up for the day. The newer ones are smaller and use blue light instead of blindingly bright yellow light, as they have found that the blue light rays in sunlight are the ones that are most effective. Blah blah blah. ...I got one and tried it....and tried it ...and tried it . He would fall asleep during or immediately after using it, instead of being awakened by it. Some reviews said it worked right away, some said it took a few weeks. When he would eventually have some better nights of sleep I 'd wonder if it was starting to help, but then he'd be back to staying up.
I've finally decided to give up on the light therapy.
I'm always searching for things that may be useful or interesting to Ambrose. I came across a website for special needs kids that featured a section of "sleep help" items. I ordered him two things from here for Christmas. The "Cuddle Cub" and "Cozy Cookie". Cuddle Cub is a stuffed bear with a heart that vibrates a heartbeat rhythm for several minutes after being squeezed and is very sensitive to movement so he can reactivate it easily. (There are many similar ones out there that make a heartbeat sound, but I don't think he could hear that.) I was very optimistic about this, as he like vibration. Cozy cookie, which we haven't received yet, as it is backordered, is a fleece gingerbread boy filled with gingerbread scented rice that you microwave to warm and soothe. This too is very exciting as St. Ambrose is the patron saint of gingerbread (as well as students, bees and beekeepers, candlemakers, masons). I learned this when I was pregnant and gingerbread boys have had special significance to me ever since.
Needless to say, Cuddle Cub doesn't help. Cozy Cookie is my last hope.
Ambrose has had several days this week without getting enough sleep at any time of day. 6-8 hours a day, instead of 12. Not sure why. Sub-clinical seizure activity?
He has been trying to make up for it the past couple of days.
It is now nearly 1 p.m. and I am watching Brosie peacefully napping, as he has been for a couple of hours now.
Thanks for reading. I hope you all have a restful night.