I've been meaning to post this...I wrote it in pencil on Dec. 18.
We go in the bathroom for bath time, which we have done every night for 3 years 8 months and 11 days. I start the water just as I always do...Sadie tries to get in fully clothed.
After bath, both girls are dry and we walk the five steps to the "dressing/playroom" which is purposefully used just for that. I spend a few seconds grabbing a diaper, pants, and shirt for Sadie. All the while, Shelbi is putting a wooden puzzle piece in the puzzle. She's been doing puzzles with ease for 4 months.
I pick Sadie up to a stand. Her body is like a rag doll. She doesn't help. I tell her to put her foot in the diaper, then the other foot. I tell her the same way I have told her for 2 1/2 years. Next comes the shirt...put your arm in, put your other arm in...the pants are next. I dress her as if she is a 30 pound baby doll. She shows no attempt at lifting her leg or arms to help this time. I know it's a rare chance that she will even attempt to lift her leg or arm...I'm dressing her the same way I did 1 year ago, 3 years ago, and quite near the same as I dressed her the day she was born. At least this time she didn't fight getting dressed.
I walk out of the gated room to start a load of laundry, which is 5 steps away. This load of laundry, like all the other loads of laundry, is full of Sadie's soiled shirts from the constant drooling and messy eating, and the occasional spitting up. Full of dish towels to clean the food off the table and floor after each of our 3 meals today.
It took about 3 minutes to dress her after her bath and about 2 minutes to load the laundry. I come around the corner to find her naked again, in all her glory...the same in which she was born. The effort, the sore back from bending and dressing her...all gone with no understanding that she has to wear clothes. She is naked.
I decided to write because I feel know one understands Sadie or what it takes to care for her. I get a pencil and notebook that have been sitting on her dresser. The notebook is sitting there because I have weighed and documented her weight since she was a few weeks old. She was and sometimes still is considered "failure to thrive."
As I write my first words, Sadie sits naked at my feet pulling her diaper apart and stuffing the pieces in her mouth. I quickly stop writing and ask her to spit the diaper stuffing out. She pulls the wet piece from her mouth, I quickly grab it. If I'm not fast enough, she will put it back in her mouth. She stands and reaches up for me to hold her like a one year old child does. She will be 4 in April.
I take her under the arms and lift her thinking how much harder and heaver she's getting. I write now and the pencil is in my right hand, her naked butt is on my hip. I have to hold her left hand with my left hand because she keeps grabbing for my notebook and pencil. She doesn't understand that I want her to stop grabbing for it.
Shelbi continues to play 3 feet from me. She is stacking Legos and putting them in the box. She is 17 months old. And she put her underwear on, she is potty trained.
Thursday, January 15, 2009
Tuesday, January 13, 2009
GOD
I was wondering about God today. Which was prompted by a friend thanking God for her answered prayer.
People pray and pray. Then their prayer is answered.
Why does God answer some prayers and not others?
Feeling sad today.
People pray and pray. Then their prayer is answered.
Why does God answer some prayers and not others?
Feeling sad today.
Monday, January 5, 2009
Sleeeeeping in the car today
January 5, 2009
Sadie had her 6 month appointment with the "rehabilitation physician." Another waste of time and insurance money. Some times I wonder how much they bleed the insurance companies...Sadie is a cash cow.
Sadie sees 9 doctors every 6 months...that's 18 specialist appointments a year...that's 540 dollars a year in copays...sometimes the doctor's cost $200-$1200 a visit...Add that up! Her AFO braces were $950...that's $475 a foot...who prices these things??? Okay enough of the soap box.
UBE3A test (Angelman's Syndrome sequencing test)
December 29, 2009
Sadie had to give blood again for the gene sequencing UBE3A test. This is the sequencing test to see if she has Angelman Syndrome (the other test was negative). My gut tells me that the test will be negative, but Bill thinks it will be positive.
My mom went with us to the lab. Of course, Sadie fought the entire time. The first nurse "blew" the vein in her left arm. Another nurse took over and was able to get 3 tubes of blood from the right arm. Sadie straddled my lap while Poppy and the nurse held her arm still. She screamed and cried the entire time...I cried.
Another exciting day in our family...I hate all of these appointments.
Two days later, I open a letter from our insurance company stating the test will be covered (already preauthorized by the doctor) for 1/1/2009 to 2/1/2009. My stomach lurched...the test is 1800 dollars and we have a 20% coinsurance payment. Today, I spoke with the genetic counselor and she assured me that it's okay and it will still be approved. We already met the $2000 yearly (2008) out of pocket for Sadie, so we wanted to get the test in before the end of the year.
This week we are trying to figure out Sadie's school situation, now that we had to pull her from private inclusion...the teachers didn't know what to do with her...she wanders the classroom while the other children are function and age appropriate.
She's also been sick with a sinus infection...me too. We are both on antibotics.
Sadie had to give blood again for the gene sequencing UBE3A test. This is the sequencing test to see if she has Angelman Syndrome (the other test was negative). My gut tells me that the test will be negative, but Bill thinks it will be positive.
My mom went with us to the lab. Of course, Sadie fought the entire time. The first nurse "blew" the vein in her left arm. Another nurse took over and was able to get 3 tubes of blood from the right arm. Sadie straddled my lap while Poppy and the nurse held her arm still. She screamed and cried the entire time...I cried.
Another exciting day in our family...I hate all of these appointments.
Two days later, I open a letter from our insurance company stating the test will be covered (already preauthorized by the doctor) for 1/1/2009 to 2/1/2009. My stomach lurched...the test is 1800 dollars and we have a 20% coinsurance payment. Today, I spoke with the genetic counselor and she assured me that it's okay and it will still be approved. We already met the $2000 yearly (2008) out of pocket for Sadie, so we wanted to get the test in before the end of the year.
This week we are trying to figure out Sadie's school situation, now that we had to pull her from private inclusion...the teachers didn't know what to do with her...she wanders the classroom while the other children are function and age appropriate.
She's also been sick with a sinus infection...me too. We are both on antibotics.
Tuesday, December 23, 2008
Monday, December 22, 2008
ABR, ASSR, and hearing test under IV Sedation
On Friday, December 19, Sadie had an ABR(auditory brainstem response), ASSR(cochlea processing), and hearing test all under IV sedation.
The day sucked. The weekend wasn't much better.
We arrived at the hospital at 9:30am. As usual, we head to the registration department so Sadie can be admitted to the hospital. She was given a hospital bracelet, we have to confirm her name and birthday because they are sedating her for the testing. Her little tummy was growling in the waiting room because she wasn't able to eat or drink before the sedation.
By 10 we were escorted to an exam room where her vitals were taken. The nurses, one by one, start to come in and ask us questions to get prepped for the testing and IV. The doctor comes who is monitoring Sadie during the sedation to ask more questions. Usually the same questions are always asked. I'm starting to feel like a robot answering... It takes 3 nurses, me at her head, and Bill holding her head, and the IV nurse to pin her down in the blanket burrito to get the IV in her hand. It is aweful!
She is given 3 doses of the sedation med each in 5 minute intervals. She finally stops fighting everything that is happening to her and she falls asleep while I rock her in my arms. I again feel overwhelmed at all the testing she goes through. Overwhelmed for her and for me.
Bill and I go down the hall to the cafeteria where we text our family that she is under sedation now. We were told the testing could take about an hour possibly an hour and a half. We quickly eat because I want to be in the waiting room the second she comes out of sedation.
After an hour, the nurse gets us from the waiting room and we rush the 20 feet to the small recovery area. Sadie is thrashing on the table with her eyes closed. Two nurses are attempting to calm her. It is near impossible. I take her in my arms and I can barely hold her. Finally, I have to sit and Bill has to sit in front of me so that we can both hold her together. She is acting like a caged animal. She is throwing herself back and arching so hard. The nurse is concerned about her reaction coming out of sedation and the doctor comes to say that some children do act like that. He says it may take two to three hours for her to snap out of it. The recovery nurse suggests we put her in her stroller because that sometimes calms children. We do as she suggests and we start walking laps around the testing area. By the second time around, she is interested in drinking her juice and munching a graham cracker. She has to do this before they will discharge her. We walk around a few more times and the nurse says we can take the IV out and go home.
She reminds me that Sadie is "drunk" from the sedation and because she is a wobbly walker anyway that we should keep a close eye on her. That turned out to be an understatement. We finally get in the car and Sadie is falling all over the place like a very intoxicated child.
We get home and Memaw is waiting for us, thank goodness Shelbi was still napping.
Sadie continues to thrash around and throw herself back in my arms. After being home about 20 minutes she throws up ALL of her juice and crackers. Lucky me, I caught most of it, so I didn't have to clean the carpet, just me. She napped for about two hours. For the rest of the night, I had to hold at least one hand to keep her from falling. The next day she remained grouchy and sensitive to being held. She threw her self back as often as she was held. By Sunday she was starting to get a little of her happy personality back. Today she is almost recovered and cheerful again.
Sad to say, the genetic counselor called and our insurance approved the UBE3a test for Angelman Syndrome so she will have to give blood again next week. Yeah!
The day sucked. The weekend wasn't much better.
We arrived at the hospital at 9:30am. As usual, we head to the registration department so Sadie can be admitted to the hospital. She was given a hospital bracelet, we have to confirm her name and birthday because they are sedating her for the testing. Her little tummy was growling in the waiting room because she wasn't able to eat or drink before the sedation.
By 10 we were escorted to an exam room where her vitals were taken. The nurses, one by one, start to come in and ask us questions to get prepped for the testing and IV. The doctor comes who is monitoring Sadie during the sedation to ask more questions. Usually the same questions are always asked. I'm starting to feel like a robot answering... It takes 3 nurses, me at her head, and Bill holding her head, and the IV nurse to pin her down in the blanket burrito to get the IV in her hand. It is aweful!
She is given 3 doses of the sedation med each in 5 minute intervals. She finally stops fighting everything that is happening to her and she falls asleep while I rock her in my arms. I again feel overwhelmed at all the testing she goes through. Overwhelmed for her and for me.
Bill and I go down the hall to the cafeteria where we text our family that she is under sedation now. We were told the testing could take about an hour possibly an hour and a half. We quickly eat because I want to be in the waiting room the second she comes out of sedation.
After an hour, the nurse gets us from the waiting room and we rush the 20 feet to the small recovery area. Sadie is thrashing on the table with her eyes closed. Two nurses are attempting to calm her. It is near impossible. I take her in my arms and I can barely hold her. Finally, I have to sit and Bill has to sit in front of me so that we can both hold her together. She is acting like a caged animal. She is throwing herself back and arching so hard. The nurse is concerned about her reaction coming out of sedation and the doctor comes to say that some children do act like that. He says it may take two to three hours for her to snap out of it. The recovery nurse suggests we put her in her stroller because that sometimes calms children. We do as she suggests and we start walking laps around the testing area. By the second time around, she is interested in drinking her juice and munching a graham cracker. She has to do this before they will discharge her. We walk around a few more times and the nurse says we can take the IV out and go home.
She reminds me that Sadie is "drunk" from the sedation and because she is a wobbly walker anyway that we should keep a close eye on her. That turned out to be an understatement. We finally get in the car and Sadie is falling all over the place like a very intoxicated child.
We get home and Memaw is waiting for us, thank goodness Shelbi was still napping.
Sadie continues to thrash around and throw herself back in my arms. After being home about 20 minutes she throws up ALL of her juice and crackers. Lucky me, I caught most of it, so I didn't have to clean the carpet, just me. She napped for about two hours. For the rest of the night, I had to hold at least one hand to keep her from falling. The next day she remained grouchy and sensitive to being held. She threw her self back as often as she was held. By Sunday she was starting to get a little of her happy personality back. Today she is almost recovered and cheerful again.
Sad to say, the genetic counselor called and our insurance approved the UBE3a test for Angelman Syndrome so she will have to give blood again next week. Yeah!
Saturday, December 13, 2008
Auditory Testing
So Sadie had her hearing test on Friday! It was fast and quite simple.
The first test was to see if there was fluid in the ear...normal.
The second test was to test the eardrum...normal.
The third test was a behavioral hearing test. In other words, the audiologist went in another room and spoke into one of two speakers to see if Sadie would look in that direction. Sadie did this for about 30 seconds and then got bored and didn't look over after that.
So, the next step...Sadie will have an "Auditory Brainstem Response" test. She will be sedated for about an hour through IV. They attach wires to her head and behind the ears to test her specific hearing and also to see if the brain is responding to the sound. During that time they will also do another test to see if her brain is actually processing sound through the cochlear.
So our questions are being anwered by more questions.
We are very grateful to live in a time where such testing can be done. It really is amazing how sophisticated medicine is today!
Sadie is such a trooper through all of this. She continues to be our little love girl and showers us with hugs and kisses constantly.
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