Goldie's surgery went well. Her surgeon is very thorough and even had an ICU room reserved for her afterwards. This was a huge precaution considering Goldie has never been hospitalized or had any previous surgeries. However, this caused some confusion as to where we were supposed to go while she was in recovery. By the time her ICU nurse called the waiting room Goldie was awake and really ticked off. I could hear her screaming in the background!
We spent the night for observation and so Goldie could get IV fluids. The next morning we were given the option of moving to a new room and staying to see how Goldie was going to eat and drink or going home. At that point she was eating jello and asking for her drink so I thought she would do even better at home. I thought.
Now I'm rethinking, because it's been a constant battle to get anything in her. At least until Daddy came home from work. She insisted on eating pizza (no crusts) with him and he got her to eat some soup. Then her sister got her to eat some Jello. I think she associates me with the yucky medicine and doesn't want anything I have to offer? The top shelf of our fridge is full of half-eaten foods I've been offering her. I even leave food around the house, hoping she'll find it and start eating. My end table is now covered in some sticky smoothie my mom brought and I keep stepping on Jello. At this point she is still having a normal amount of wet diapers, so we'll see what tomorrow brings.
As far as pain goes, that seems to fluctuate throughout the day. She was miserable all afternoon, but had a really great evening. We'll just keep taking it one day at a time.
Sunday, August 30, 2009
Wednesday, August 26, 2009
Before T & A Surgery
Goldie is having her tonsils and adenoids removed on Friday. I wanted to document for myself what her sleep is like now. She has been sleeping through the night most of the time. By sttn, I mean she doesn't wake ME up. When I was sick, I sat up and watched her for an hour in the middle of the night. She must have sat up at least 6 times. No wonder people are constantly telling us "she looks tired."
I think the melatonin has helped Goldie with being able to fall back to sleep on her own. She gets 1-1.5 mg before bed. I read on an email list that melatonin works better in conjunction with omega-3's. I didn't give it much thought until we ran out of Goldie's fish oil. I kept giving her melatonin, but she wasn't sleeping at night. After two nights it dawned on me that she wasn't getting her fish oil. I bought more and she was back to sleeping well again.
Which brings us to last night. Omega-3's have a side effect of thinning the blood so we had to stop giving them before Goldie's surgery. Then we ran out of melatonin yesterday. I went to get more and they are out of the brand we use. The brand I ended up with takes 4 droppers to equal 1 of our normal brand! And the droppers aren't marked with ml. Last night, Hank and I were up with Goldie from midnight until 2 am. That's when he put Signing Time on and stuck her in the pack and play while he slept on the couch. She was tired the entire time she was up. She kept moaning and sucking her thumb. (this is her self soothing technique) Her only nap today was 20 minutes in the van. She fell asleep outside in the swing at 7:30 and was back up at 9. I got her back to sleep and haven't heard from her yet. I'm off to join her as quick as I can. Who knows what tonight will be like.
I would appreciate any prayers or happy thoughts you can spare on Friday. I'm having a hard time just thinking about handing my baby girl over for surgery.
I think the melatonin has helped Goldie with being able to fall back to sleep on her own. She gets 1-1.5 mg before bed. I read on an email list that melatonin works better in conjunction with omega-3's. I didn't give it much thought until we ran out of Goldie's fish oil. I kept giving her melatonin, but she wasn't sleeping at night. After two nights it dawned on me that she wasn't getting her fish oil. I bought more and she was back to sleeping well again.
Which brings us to last night. Omega-3's have a side effect of thinning the blood so we had to stop giving them before Goldie's surgery. Then we ran out of melatonin yesterday. I went to get more and they are out of the brand we use. The brand I ended up with takes 4 droppers to equal 1 of our normal brand! And the droppers aren't marked with ml. Last night, Hank and I were up with Goldie from midnight until 2 am. That's when he put Signing Time on and stuck her in the pack and play while he slept on the couch. She was tired the entire time she was up. She kept moaning and sucking her thumb. (this is her self soothing technique) Her only nap today was 20 minutes in the van. She fell asleep outside in the swing at 7:30 and was back up at 9. I got her back to sleep and haven't heard from her yet. I'm off to join her as quick as I can. Who knows what tonight will be like.
I would appreciate any prayers or happy thoughts you can spare on Friday. I'm having a hard time just thinking about handing my baby girl over for surgery.
Saturday, August 15, 2009
Summer Sickies
I have been sick for an entire week now with bronchitis. I hate taking medicine when I'm pregnant, but my midwife doesn't want it turning into pneumonia. I figured it would be better to take some mild OTC stuff now than get really sick and have to take more potent drugs later. I don't know where I got this because the rest of my family seems completely healthy. Unless, you count Goldie's weird eye infection. It's not pink eye and is doing much better now that she is also on antibiotics. So, we're going to finish our weekend of trying to rest and get better. Her surgery is in less than two weeks and I want her to stay healthy! I'm stocking up on popsicles and applesauce.
Wednesday, August 12, 2009
Tuesday, August 11, 2009
Disabled Students are Spanked More
I was a little surprised to read this.
When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)
Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.
And how about my gym teacher that had children sign the paddle after he spanked them with it?
I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.
When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)
Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.
And how about my gym teacher that had children sign the paddle after he spanked them with it?
I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.
Wednesday, August 5, 2009
Friday, July 31, 2009
Updates and an Ultrasound
We had a week of good news!
First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.
Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.
Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.
I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.
Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.
But, not before we found out we're having a BOY!
First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.
Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.
Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.
I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.
Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.
But, not before we found out we're having a BOY!
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