Raising kids is tough, sure. With Allie it really doesn't seem to difficult. I kind of took for granted the people who help make her a great, easy kid. But it took Boo to make me realize that it was more than just her parents that make Allie the girl she is becoming.
My husband, in-laws (who unlike my mom live in town), friends, Allie's daycare when she was younger and teachers now that she is (gasp!) entering 3rd grade. All of them contributed to making her an awesome, easy child who is fun to be around. And sure, I had something to do with it too!
But I would not be able to keep my sanity without the village that keeps Boo going. Without her village of physical, speech, occupational, feeding therapists Boo would not be walking, talking and eating me out of house and home. Without her village of daycare providers who took her as their first special needs child EVER in the history of their school, Boo would not have had a loving and nurturing place to go while mom & Dad were at work. Without her village of medical professionals Boo would not be alive let alone walking, talking and playing with her sister. Without her village of the special education program thru our local school system, Boo would not have made such terrific gains this summer. She made a friend and knew her teachers names!
Without Boo's family village she would not have blossomed. And I am not limiting that to just Allie! Boo has a great support system of grandparents, aunts/uncles, cousins and friends who are sometimes closer than family.
She is an incredibly lucky child.
This week has proven that. My mom came up for a visit, she has made my life so much easier this week. Caring for the girls so that my husband and I could just go to work without worrying about bathing, dressing, feeding, medicating Boo. She took them on adventures, cleaned my bathroom (yes, she is my favorite mom), did the dishes and picked up some groceries. And wine (yup, favorite!).
Last night grandpa arrived. Chaos ensued as Allie had her two favorite people were here (she sees new Barbies in her future) for the long weekend.
So not only should a special needs child come with a village, it should come with a great grandmother who visits every couple of months. It's really not fair otherwise :)
The life and times of Boo. A girl without a diagnosis but with unlimited possibilities!
Friday, August 31, 2012
Thursday, August 30, 2012
One more day
We did it! We survived summer vacation. I know, I am a horrible mom. I am one of those moms that would vote for school to be year round with mini vacations throughout the year. Maybe if I was a stay-at-home mom I would think differently. But I bet they cannot wait for summer to end more than me! It is just so hard to keep the girls busy (with fun stuff) and then I feel guilty for not taking time off to spend with them. Unfortunately, my vacation/sick days are reserved for Boo's appointments and some long weekends here and there so I don't go insane.
Thank goodness Boo was eligible for a summer program. She has this week off and goes for half-days next week. Allie goes back next week and I am doing a mini dance at my desk. She, well not so much. Allie does not like school. Don't get me wrong. Allie loves the social aspect of school, gym and recess. Other than that she would rather not go, thank you very much.
Allie is a smart kid. A brilliant reader with an imagination that amazes me. Allie does not enjoy math/tests/having to do the assignment just as the teacher described. I remember one day last year her coming home so mad at the art teacher. She did not WANT to draw the apple, she wanted to draw a princess. Why should she have to draw something so boring as an apple?
I blame myself (of course). Allie spent preschool and kindergarten in a Montessori school. She excelled under that program. But man did she work it! There is a reason Allie doesn't do well in math. At Montessori she only worked on things she liked but never put the time in for the work. When the decision came for first grade we figured she needed a bigger pond and a lot more disciplined teaching style. Rather than going full out discipline (think Catholic nunnery) we opted for the public school.
Allie had a hard adjustment academically. Socially she is a butterfly (probably again why academics are difficult! She is too busy with her friends). I hadn't realized how far behind she was in the math areas. Reading though, man she reads two grade levels ahead. When you can force her to do it, then she won't put the book down. (guilty here I let her slack this summer)
My parents are going to be here for the first day of school. Boo's school starts at the same time. I will be leaving them to put Allie on the bus and then escape to work.
Where I will be doing my happy dance that the girls are back in school. I will also start the acceptance speech for mom of the year.
Thank goodness Boo was eligible for a summer program. She has this week off and goes for half-days next week. Allie goes back next week and I am doing a mini dance at my desk. She, well not so much. Allie does not like school. Don't get me wrong. Allie loves the social aspect of school, gym and recess. Other than that she would rather not go, thank you very much.
Allie is a smart kid. A brilliant reader with an imagination that amazes me. Allie does not enjoy math/tests/having to do the assignment just as the teacher described. I remember one day last year her coming home so mad at the art teacher. She did not WANT to draw the apple, she wanted to draw a princess. Why should she have to draw something so boring as an apple?
I blame myself (of course). Allie spent preschool and kindergarten in a Montessori school. She excelled under that program. But man did she work it! There is a reason Allie doesn't do well in math. At Montessori she only worked on things she liked but never put the time in for the work. When the decision came for first grade we figured she needed a bigger pond and a lot more disciplined teaching style. Rather than going full out discipline (think Catholic nunnery) we opted for the public school.
Allie had a hard adjustment academically. Socially she is a butterfly (probably again why academics are difficult! She is too busy with her friends). I hadn't realized how far behind she was in the math areas. Reading though, man she reads two grade levels ahead. When you can force her to do it, then she won't put the book down. (guilty here I let her slack this summer)
My parents are going to be here for the first day of school. Boo's school starts at the same time. I will be leaving them to put Allie on the bus and then escape to work.
Where I will be doing my happy dance that the girls are back in school. I will also start the acceptance speech for mom of the year.
Wednesday, August 29, 2012
Phew!
First, a quick update. The plague seems to be lifting.
Second, my mom is in grandma heaven. She had Boo to herself all yesterday afternoon while Allie & Husband rested. She hadn't seen the girls in about 3 months. An eternity according to her and Allie.
Sometime I look at Boo's life as a war. Made up of little battles that she has to win in order to make gains developmentally. When I am in the trenches I forget to look at (and sometimes acknowledge) the progress she has made. I am too focused on the next objective. But since my mom hasn't seen Boo since she began the new SPED program she notices the changes right away. She is amazed how far Boo has come since May.
Of course, she is going to take Boo and Allie back-to-school shopping today. Alone. She may be wishing for the Boo who was content just to hang in the stroller by the end of the afternoon :)
Second, my mom is in grandma heaven. She had Boo to herself all yesterday afternoon while Allie & Husband rested. She hadn't seen the girls in about 3 months. An eternity according to her and Allie.
Sometime I look at Boo's life as a war. Made up of little battles that she has to win in order to make gains developmentally. When I am in the trenches I forget to look at (and sometimes acknowledge) the progress she has made. I am too focused on the next objective. But since my mom hasn't seen Boo since she began the new SPED program she notices the changes right away. She is amazed how far Boo has come since May.
Of course, she is going to take Boo and Allie back-to-school shopping today. Alone. She may be wishing for the Boo who was content just to hang in the stroller by the end of the afternoon :)
Tuesday, August 28, 2012
The Plague
The Plague has invaded our house. First Boo, then me and just when I thought it was safe to disinfect the house...Allie and husband came down with it last night. I finally escaped to work this morning. My poor mother is flying in this morning. I called to warn her of the Plague. She is coming anyway. She misses the girls and hasn't seen them since May.
I cannot wait for her to see the changes is Boo. She has progressed so much with the summer program. The rest of the family is coming later in the week. But my mom wanted some Grandma time. With Boo on break and Allie still on summer vacation, mom has a lot of visiting planned.
I did warn her about the Plague. She is coming anyway.
Gotta love your mom!
I cannot wait for her to see the changes is Boo. She has progressed so much with the summer program. The rest of the family is coming later in the week. But my mom wanted some Grandma time. With Boo on break and Allie still on summer vacation, mom has a lot of visiting planned.
I did warn her about the Plague. She is coming anyway.
Gotta love your mom!
Friday, August 24, 2012
Boo is still sleeping. She did not have a great night. She is not longer throwing up, but has a slight fever. Since I have a more flexible work environment (Hubby cannot just show up when he can!), I elected to let her sleep in and possibly go into work later in the morning.
But let's face it. I probably will end up having to take the whole day off. I don't like leaving Boo when she is sick. Especially since the littlest thing can send her system into a tail spin. It's so much more difficult when Boo is sick. When Allie is not feeling well she can tell me what's wrong. Usually she just wants to lay on the couch and watch TV. Boo, well she cannot tell me what hurts. Sure I figure her belly is upset. I'm not an idiot (the vomiting was the first clue!). But that has ended and now she is slightly feverish. She hasn't turned blue yet, so I am not expecting a fever spike. Although I have learned to expect the unexpected.
I hear her stirring...
But let's face it. I probably will end up having to take the whole day off. I don't like leaving Boo when she is sick. Especially since the littlest thing can send her system into a tail spin. It's so much more difficult when Boo is sick. When Allie is not feeling well she can tell me what's wrong. Usually she just wants to lay on the couch and watch TV. Boo, well she cannot tell me what hurts. Sure I figure her belly is upset. I'm not an idiot (the vomiting was the first clue!). But that has ended and now she is slightly feverish. She hasn't turned blue yet, so I am not expecting a fever spike. Although I have learned to expect the unexpected.
I hear her stirring...
Thursday, August 23, 2012
This was so not in the parenting manual
You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.
Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift. As I lay Boo on the couch to go to work, she throws up one more time....all over me.
Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.
And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is 'exhausted' but 'surviving'.
And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.
But you need the paycheck. So you put your big girl panties on and go to work.
And think to yourself, I'd really like to meet the author of that book, because they have no freaking idea of what to expect.
Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift. As I lay Boo on the couch to go to work, she throws up one more time....all over me.
Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.
And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is 'exhausted' but 'surviving'.
And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.
But you need the paycheck. So you put your big girl panties on and go to work.
And think to yourself, I'd really like to meet the author of that book, because they have no freaking idea of what to expect.
Tuesday, August 21, 2012
Pro-something
First, let me start off by saying I am pro-choice because I do not believe I have the right/authority to tell anyone (other than Allie) what to do. I also do not believe that any idiot senator should be able to tell a woman if she does/does not have the right to terminate her pregancy for any reason.
BUT....here is my pro-life statement: Boo. What if you were told that your newborn would spend her first week in the NICU on oxygen and she (and you) might not survive the stress of that first week? Let alone the next 8 admissions that first year alone.
Or that a month later you would spend your birthday in the hospital since your newborn was sick for some unknown reason?
What if you were told that their lfirst year of ife would be a battle to survive? That she would undergo an endoscopy, bronchoscopy, MRI's, EEGs, all before they turned a year old? She would be eventually be on the champagne formula, Elecare, because she could not tolerate anything else.
What if they told you that you would spend most of your days in therapies and have to see up to 15 specialists a year? That your daycare, when she was finally able to go, would call you that she was screaming for some unknown reason. That they could not calm her because it was obvious she was in extreme pain. But no one knew why.
What if they told you that although most babies know how to drink/eat it would take you 2 years in something called feeding therapy to get your child to be able to eat without choking?
Or that just when she was learning to walk she would be faced with spinal surgery. You spent almost 3 years in physical therapy and 9 months on a pediatric walker just trying to get her to be ambulatory and now they were going to cut her back open?
What if they said that at 3 1/2 YO she would bang her head uncontrollably when frustrated because she cannot communicate?
What if they told you she would turn blue for no reason, but not to worry because they don't know why but it doesn't seem to distress her.
Would you abort?
Then you haven't met Boo!
Boo cannot point to Momma in a picture but she can pick her sister out of school bus.
Boo now chases her puppy around the house. WITHOUT her walker.
Boo has 15 signs, 35 words and 4 phrases consistently.
Boo LOVES pool therapy.
Boo now out-eats her sister.
Boo loves us and we love her.
If you aborted Boo, you would not be blessed.
So while I am still pro-choice for you. And I think that Senator is an absolute idiot, by the way. But for me, the "choice" would be so much harder. Because I have had the absolute pleasure of loving Boo.
BUT....here is my pro-life statement: Boo. What if you were told that your newborn would spend her first week in the NICU on oxygen and she (and you) might not survive the stress of that first week? Let alone the next 8 admissions that first year alone.
 |
| Boo just home from the NICU had to be constantly upright to avoid aspiration |
Or that a month later you would spend your birthday in the hospital since your newborn was sick for some unknown reason?
 |
| Boo 1.5 months old spending Mommy's birthday at CHB |
What if you were told that their lfirst year of ife would be a battle to survive? That she would undergo an endoscopy, bronchoscopy, MRI's, EEGs, all before they turned a year old? She would be eventually be on the champagne formula, Elecare, because she could not tolerate anything else.
What if they told you that you would spend most of your days in therapies and have to see up to 15 specialists a year? That your daycare, when she was finally able to go, would call you that she was screaming for some unknown reason. That they could not calm her because it was obvious she was in extreme pain. But no one knew why.
What if they told you that although most babies know how to drink/eat it would take you 2 years in something called feeding therapy to get your child to be able to eat without choking?
Or that just when she was learning to walk she would be faced with spinal surgery. You spent almost 3 years in physical therapy and 9 months on a pediatric walker just trying to get her to be ambulatory and now they were going to cut her back open?
What if they said that at 3 1/2 YO she would bang her head uncontrollably when frustrated because she cannot communicate?
What if they told you she would turn blue for no reason, but not to worry because they don't know why but it doesn't seem to distress her.
Would you abort?
Then you haven't met Boo!
Boo cannot point to Momma in a picture but she can pick her sister out of school bus.
Boo now chases her puppy around the house. WITHOUT her walker.
Boo has 15 signs, 35 words and 4 phrases consistently.
Boo LOVES pool therapy.
Boo now out-eats her sister.
Boo loves us and we love her.
If you aborted Boo, you would not be blessed.
So while I am still pro-choice for you. And I think that Senator is an absolute idiot, by the way. But for me, the "choice" would be so much harder. Because I have had the absolute pleasure of loving Boo.
Monday, August 20, 2012
We survived
What a fabulous LONG weekend! The weather was perfect, Allie had a great time hanging with her friend, husband was with campfire/beer/friends so he was more than happy. Boo did great! She wore her neon for the Neon Pot Luck and happily danced on the table to Zac Brown.
The entire campground got to meet Boo as she toured every campsite with a puppy and asked for a hug. After the first couple of rounds they told me she didn't have to ask just come on over. Which she did, every hour.
On Friday night, since we were camping with 50 of our closest friends, we had a theme-night pot luck dinner. Some one picked neon as the theme. We are still not speaking to her...
Allie showed us how to be stylish in neon
And Boo, while she was more than stylish...
And was the first to dance on the table...
The only hiccup were the fireworks. Boo did not enjoy them, at all. So we strolled back to the camper while Allie and husband stayed to watch the show.
This morning I had to wake an exhausted Boo for school. She slept thru breakfast where I basically placed milked-soaked Cheerios in her mouth. She did wake up during her bath!
We are already signed up for next year, this time for a full week. I did not warn the other campers :)
The entire campground got to meet Boo as she toured every campsite with a puppy and asked for a hug. After the first couple of rounds they told me she didn't have to ask just come on over. Which she did, every hour.
On Friday night, since we were camping with 50 of our closest friends, we had a theme-night pot luck dinner. Some one picked neon as the theme. We are still not speaking to her...
Allie showed us how to be stylish in neon
And Boo, while she was more than stylish...
And was the first to dance on the table...
The only hiccup were the fireworks. Boo did not enjoy them, at all. So we strolled back to the camper while Allie and husband stayed to watch the show.
This morning I had to wake an exhausted Boo for school. She slept thru breakfast where I basically placed milked-soaked Cheerios in her mouth. She did wake up during her bath!
We are already signed up for next year, this time for a full week. I did not warn the other campers :)
Wednesday, August 15, 2012
We are outta here
We are heading to a campground with power. With 50 of our closet friends.It's like staying at the Ritz for us. Usually we camp and it is a lot more rustic. But we are going this week and camping in style. Well, neon for the theme night pot luck dinner. That's a style, right?
I have 4 dozen whoopee pies made, 2 dozen chocolate chip cookies and 3 dozen half-moon cookies made for the pot luck. And three bottles of wine. That should be enough, right?
Allie is over the moon. There will be kids her age there. Even the big kids are great, allowing the younger ones to tag along.
Boo has no idea what is going on. But she has unpacked the suitcase a million times. Okay, I exaggerate. Only a thousand.
Crazy puppy is happy. He is not going camping but to a friends house to be spoiled rotten without any Boo's using his back to head-bang.
Husband is excited. It's not his type of camping (too many amenities) but he will be with 50 of his closest friends. And there will be beer, fire and fireworks.
I'm stressed. I already told you once about my lack of packing talent. Combined with knowing there is a river RIGHT NEXT to the campsite and knowing Boo has a tendency to well, wander. And I have to wear neon for theme night. My outfit looks like Olivia Newton John in Let's Get Physical. Except in yellow.
But with the wine and whoopee pies, it should be fine. Right?
I will post pics next week. Until then stay sane :)
Slowing to Boo's speed
Last night Allie had a sleep over with her Gram, Husband was working so it let Boo, crazy puppy and I alone in the house. Without any distractions. Serendipitously, Boo's therapy got canceled at the last minute.
It was kind of awesome.
We got home right after school, rather than hours later (well after a stop for Gelato and Pinot Grigio) . We had french toast for dinner. We sat on the stairs for 10 minutes after Boo told me to "sit down" "here" and patted the seat next to her. Later in the afternoon she sat at the kitchen table as I finshed the dishes and called me over. "Come ere" "sit down". From the child who was only had 15 words 3 months ago her demands were music to my ears! So I sat. down. here.
Normally I am running around like a crazy person. Especially after working all day. But last night I let Boo set the pace. Unlike the rest of us (at least in this family), Boo is content to just sit.
And bonus, she was asleep by 7pm. Alone in the house, with a sleeping Boo, content pup, gelato, pinot and a new book.
Simply, awesome.
It was kind of awesome.
We got home right after school, rather than hours later (well after a stop for Gelato and Pinot Grigio) . We had french toast for dinner. We sat on the stairs for 10 minutes after Boo told me to "sit down" "here" and patted the seat next to her. Later in the afternoon she sat at the kitchen table as I finshed the dishes and called me over. "Come ere" "sit down". From the child who was only had 15 words 3 months ago her demands were music to my ears! So I sat. down. here.
And bonus, she was asleep by 7pm. Alone in the house, with a sleeping Boo, content pup, gelato, pinot and a new book.
Simply, awesome.
Tuesday, August 14, 2012
Earn these stripes
Last night the husband and I were watching Stars Earning Stripes. Once I got over the fact that Todd Palin was actually a star (even though he really did awesome) I started thinking, of an alternative program:
Stars
Earn Special Mom Stripes
Seriously, think of the mission objectives.....Dean Cain, former Superman Star, your mission if you choose to accept it is:
Mission One—smells the alluring scent of a HAZMAT and determines if it is coming from:
A.
The crazy puppy
B.
Boo
C.
Both
(The correct answer would be C)
Mission
Two—spend one week in the NICU with only 30 minutes of sleep each 24 hour
period
Mission
Three—hold the child down in the death grip position as the technician attempts
to glue EEG leads onto their head.
Mission
Four—do not hurt the EEG technicians who after you finally get the child to
sleep for the EEG tells you after 5 minutes it is time to wake them up.
Mission
Five—know the name of every person involved in your child’s care without the
help of nametags
Mission
Six—learn sign language (okay, this is a soft-ball mission meant to restore
confidence after Missions 1-5)
Mission
Seven—navigate the IEP process
Mission
Eight—do not lose the wandering child
Mission
Nine—fight with the lovely representative at the insurance company who is
trying to deny your child’s medicine, formula, and therapies, anything else
they can think of and win the battle
Mission
Ten—clean the bathroom while not letting the crazy puppy or child drink the
cleaning supplies
Mission
Eleven—keep a full-time job outside of the house and still attend every MD appointment
and 75% of the therapies
Mission
Twelve—convince the MD that although it may just look like heat rash it must be
something more and be proven right
Mission
Thirteen—provide equal attention to the first born child
Mission
Fourteen—remember you have a spouse and they demand attention too
And
last but not least….should you survive and overcome the first fourteen
obstacles
Mission
Fifteen—remember at the end of the day you are the parent and not the
therapist. Try to relax once in a while!
Okay, Todd Palin as a more or less stay-at-home dad of a great kid might be able to earn his stripes. But I dare the chick from WWE J
Monday, August 13, 2012
Weekend madness
Is it just me, or does everyone give a sigh of relief on Monday when their child goes back to school?
I LOVE Boo. I love being home with her. But man, weekends are hard. And not just for me, but she seems much happier Mon-Thurs. Even with therapies after school, she may be exhausted but she seems much more relaxed. It could just be she is exhausted!
But I think Boo loves the routine of school. There is no routine at home. She loves that some one sits with her at lunch. Sorry, I have to do dishes, laundry, etc! She has a one-to-one aide at school. At home she has her sister, her crazy puppy and father competing for mom's attention.
Throw Allie into the mix, who is just happy to have mom home and not at work all day. She is great with Boo but every once and a while forgets who the mom is. As much as she says she doesn't want to go back to school, I think I am not the only one who cannot wait until September.
As I walked out the door this morning, I breathed a sigh of relief. Mom of the year for sure!
I LOVE Boo. I love being home with her. But man, weekends are hard. And not just for me, but she seems much happier Mon-Thurs. Even with therapies after school, she may be exhausted but she seems much more relaxed. It could just be she is exhausted!
But I think Boo loves the routine of school. There is no routine at home. She loves that some one sits with her at lunch. Sorry, I have to do dishes, laundry, etc! She has a one-to-one aide at school. At home she has her sister, her crazy puppy and father competing for mom's attention.
Throw Allie into the mix, who is just happy to have mom home and not at work all day. She is great with Boo but every once and a while forgets who the mom is. As much as she says she doesn't want to go back to school, I think I am not the only one who cannot wait until September.
As I walked out the door this morning, I breathed a sigh of relief. Mom of the year for sure!
Friday, August 10, 2012
A year ago
But this, it just took the rug out from underneath me. I am still not sure why. I remember when GI (of all specialities) wanted to do the MRI of the spine to see if, by slim chance, Boo had a tethered cord. Her doc had recently been to a conference where they found that children who have extreme bowel issues ended up having an undiagnosed tethering. For some reason (medical, beyond me) the nerve endings interfered with the bowels.
Since Boo had to be sedated anyway, I e-mailed all the docs and asked if anyone else wanted something done to schedule it for the same day. Neurology decided to rescan her brain to see if there was any change to the corpus callosum (the white matter in between your gray matter, Boo's was too thin).
Since we were told that the corpus callosum could not 'grow back' I expected to hear that Boo's brain still showed evidence of a lack of CC. I figured the spine MRI would be fine.
I couldn't have been more unprepared.
The brain MRI showed that the corpus callosum had completely grown in. That it was, for lack of better terminology, perfect. BUT the spine MRI showed a tethered chord and she would need surgery.
Here was the kicker, unlike all the other crisises, the decision for surgery was up to me. Not the neurosurgeon (whom I despised) that went to an actual medical school, but me. The mom. The one without a medical degree. Sure it was up to husband, too. But let's face it, this was a decision that I had to make.
We were told that the tethering was "POSSIBLY" affecting her bowels but they didn't know for sure. What they did know was between now and when she was in her late teens she would most "PROBABLY" need to have the surgery. It was up to me to decide when and if. That the surgery was "no big deal" he did it all the time. (yup, I still dislike him) I replied that he didn't operate on MY daughter's spine every day of the week and this was major surgery for her, if not for him.
Hello, can I say again that I do not have a medical degree?
Since I (inappropriately) despised the neurosurgeon we met, I got a second opinion at another hospital. Where, I basically got the same diagnosis. However Doctor #2 felt that the tethering was more severe than what doctor #1 thought. She said that if it was her daughter she would do the surgery sooner rather than later. She went in to all the risks associated with waiting. She emphasized with how hard the decision was to make. I loved her.
But off we went to our local Pedi for his opinion. He told us that when the number one doc in the country tells you your daughter needs surgery you don't go against his recommendation. And as much as I loved doctor #2, our pedi (correctly) felt that since Boo's 13 other doctors were at hospital #1 we should stick with doctor #1. Because in the case of Boo, if something can go wrong it will.
I went home and broke. Literally fell to the floor and broke.
That was when I learned how strong and how much I depend on my BFF, Tia. She let me break and was strong enough to carry me through the hardest (at the time) decision. It was then that I realized that without my 'village' life with Boo is impossible.
I decided to do the surgery sooner rather than later. I felt that the pain would be more easily managed, that because she would have to stay flat in bed it would be easier to do at 2.9 than 18 years. That if something went wrong, I would rather have her not know. My rationale was Boo had just started walking independently that week. If she was unable to go back to walking afterwards, in my mind, it would be better not to have walked. I was probably wrong in all of these thoughts. But they were mine, honest and true.
So a year ago, on August 10th Boo had spinal surgery.
The nurses at Children's Hospital Boston are simply the best. Not only did they not let doctor #1 discharge her when he wanted at post-op day 2. They went over his head to keep her to post-op day 3 as per protocol and she was beyond constipated. They were loving, supportive and thought of everything. Even her bandage!
The surgery also did NOT fix her bowel issues. Although she did grow an inch, so while she is still "short" she is growing. Hey, I take my side benefits where I can. I still cannot stand him, but my daughter can still walk so it's all good.
The surgery went so well, in fact, that as soon as we got home Boo was climbing on top of my kitchen table. The next week she fell down the stairs and gave herself a nice concussion. But the spine was fine.
And so was Boo. We survived not only the surgery but the experience. I will never forget how happy I was to be discharged from the hospital. I will never forget how when I needed strength Tia was there.
I will never forget that it okay to break once in a while. As long as I have Tia.
Wednesday, August 8, 2012
Head banging, just not heavy metal style
I am a child of the 80's. Loved the music and can remember driving in the car head-banging to Motley Crue, Queen, Def Leopard, etc...I think I even head banged to Journey once.
Boo bangs her head. A lot. She doesn't bang her head on anything soft. Nope, she will move from the grass to the pavement, from the rug to the tile, from the wall to the stud in the wall.
It's quite surprising, really, when you think about it, how she can find the stud.
I don't know why she does it. Well, not exactly. I know she is equal parts frustrated with a healthy mix of looking for attention. But I do not believe that is the case 100% of the time.
For example, she will sit on my lap and start banging her head on my shoulder, not my hand should I try to save myself the bruise. Or she will walk up to me and start banging against my hip, not the thigh that has a lot more padding. With no correlating reason. She will just stop what she is doing, bang her head and then carry on.
I've been struggling with how to handle the behavior. Do I ignore it and risk her hurting herself (she has once hit with such force she had an egg on her forehead). Or do I hug her or do I scream (yep, done that!). Do I apply pressure or give her the words for what she is feeling? Not sure how to do that since I don't know what set it off in the first place!
I've tried all of the above. She still bangs her head.
The thing is, I do not believe she feel the pain. Not only that, but it must be giving her some relief as she is using it to relieve her frustration.
This week Boo banged her head while we were at one of the many specialists office. This time she was definitely looking for attention (or she was tired of us talking like she wasn't in the room). She started banging her head on the table, I stopped her but continued talking to the doctor.
Because he is one of the doctors who truly cares about Boo and reads her case file the night before our semi-annual visit says, "Oh I was going to ask if she is still head banging".
Yep she is!
But unlike the other doctors, this one actually offered me advice! He told me that studies have shown that children like Boo who head-bang do not feel the pain input. They recommend that you stop the child and make them safe but do not engage them (i.e. ask what is wrong) or acknowledge what they are doing in any way (i.e. the helpful therapist that said to say in a sing-song voice "Boo I know you are frustrated, you should tell mommy that you are sad"--okay lady the child cannot tell me she is hungry and you want her to tell me she is sad?).
Basically, just stop her from banging her head and go about my business.
But then we went to OT last night and Boo got scared by something the therapist wanted to try. When she got off the swing Boo went off the soft mat to the concrete and again started head banging. This time I knew what was wrong, she was scared and upset that something was forced on her.
I stopped her and did as the MD suggested. The OT went to Boo and said, "Boo I know you were scared and Miss S should have understood sooner". I explained what the MD had suggested. She countered that she felt it was better to engage the child and validate their feelings.
Mixed messages.
I feel like an absolute idiot saying (in a soft, sing-song voice), "Boo you must be feeling...." especially since half the time I don't know what has frustrated her. I will, for now, follow the MD advice. Make her safe and not acknowledge/engage the behavior.
And I will start to play Motley Crue more often.
Boo bangs her head. A lot. She doesn't bang her head on anything soft. Nope, she will move from the grass to the pavement, from the rug to the tile, from the wall to the stud in the wall.
It's quite surprising, really, when you think about it, how she can find the stud.
I don't know why she does it. Well, not exactly. I know she is equal parts frustrated with a healthy mix of looking for attention. But I do not believe that is the case 100% of the time.
For example, she will sit on my lap and start banging her head on my shoulder, not my hand should I try to save myself the bruise. Or she will walk up to me and start banging against my hip, not the thigh that has a lot more padding. With no correlating reason. She will just stop what she is doing, bang her head and then carry on.
I've been struggling with how to handle the behavior. Do I ignore it and risk her hurting herself (she has once hit with such force she had an egg on her forehead). Or do I hug her or do I scream (yep, done that!). Do I apply pressure or give her the words for what she is feeling? Not sure how to do that since I don't know what set it off in the first place!
I've tried all of the above. She still bangs her head.
The thing is, I do not believe she feel the pain. Not only that, but it must be giving her some relief as she is using it to relieve her frustration.
This week Boo banged her head while we were at one of the many specialists office. This time she was definitely looking for attention (or she was tired of us talking like she wasn't in the room). She started banging her head on the table, I stopped her but continued talking to the doctor.
Because he is one of the doctors who truly cares about Boo and reads her case file the night before our semi-annual visit says, "Oh I was going to ask if she is still head banging".
Yep she is!
But unlike the other doctors, this one actually offered me advice! He told me that studies have shown that children like Boo who head-bang do not feel the pain input. They recommend that you stop the child and make them safe but do not engage them (i.e. ask what is wrong) or acknowledge what they are doing in any way (i.e. the helpful therapist that said to say in a sing-song voice "Boo I know you are frustrated, you should tell mommy that you are sad"--okay lady the child cannot tell me she is hungry and you want her to tell me she is sad?).
Basically, just stop her from banging her head and go about my business.
But then we went to OT last night and Boo got scared by something the therapist wanted to try. When she got off the swing Boo went off the soft mat to the concrete and again started head banging. This time I knew what was wrong, she was scared and upset that something was forced on her.
I stopped her and did as the MD suggested. The OT went to Boo and said, "Boo I know you were scared and Miss S should have understood sooner". I explained what the MD had suggested. She countered that she felt it was better to engage the child and validate their feelings.
Mixed messages.
I feel like an absolute idiot saying (in a soft, sing-song voice), "Boo you must be feeling...." especially since half the time I don't know what has frustrated her. I will, for now, follow the MD advice. Make her safe and not acknowledge/engage the behavior.
And I will start to play Motley Crue more often.
Tuesday, August 7, 2012
Fireworks and other milestones
This weekend we went on our annual trip to my husband's semi-family reunion. It is just a couple of in-laws and cousins. L opens her barn (yep, she lives in a barn) to us the first weekend in August. We drive up with our camper so we have AC and a quiet place to sleep. We play in her pool, eat a lot of food and just catch up with one another. Boo is the youngest and Auntie D is the oldest at 88 years young (side note, she and Uncle O have been married 67 years, can you imagine?).
L's town does an annual homecoming with a fair and fireworks. Generally the girls and I watch the fireworks from the car. The fireworks literally go BOOM right over your head and the noise is a little much for both girls. Last year Allie graciously offered to keep me company in the safety of the car. But this year she was determined to film the show.
Not only did Allie take an awesome video (with commentary, of course) and great photos, both she and Boo watched the entire show with the family. Okay, Boo didn't really watch the show. But in between asking if she could give the lights a hug, she was vocal in telling me "I don't like" (a whole sentence, speech therapy in action).
A milestone for both girls, watching fireworks!
L's town does an annual homecoming with a fair and fireworks. Generally the girls and I watch the fireworks from the car. The fireworks literally go BOOM right over your head and the noise is a little much for both girls. Last year Allie graciously offered to keep me company in the safety of the car. But this year she was determined to film the show.
Not only did Allie take an awesome video (with commentary, of course) and great photos, both she and Boo watched the entire show with the family. Okay, Boo didn't really watch the show. But in between asking if she could give the lights a hug, she was vocal in telling me "I don't like" (a whole sentence, speech therapy in action).
A milestone for both girls, watching fireworks!
Monday, August 6, 2012
Boo was on vacation last week from her summer program. Today when I dropped her off I was a little nervous that she would not want to go. Not that being home is so much fun, but that she would have forgotten her friends.
As I stood in the hall with the other vacation weary moms I realized I was not the only one looking forward to drop off. Hey, we love our kiddos but it's tough being home with them all weekend let alone a full week!
I shouldn't have worried. Boo left me without a backwards glance!
As I stood in the hall with the other vacation weary moms I realized I was not the only one looking forward to drop off. Hey, we love our kiddos but it's tough being home with them all weekend let alone a full week!
I shouldn't have worried. Boo left me without a backwards glance!
Friday, August 3, 2012
Packing
I HATE packing. Don't get me wrong, I love going away. I just hate packing. Then add having to pack for 3 people (hubby is on his own) and I see the joy of staying home.
The problem with packing is I always forget something. Like the time we went camping Shenandoah and I forgot Allie's underwear. The nearest store was over an hour away! Or the time we went to Disney and I packed for Florida weather and instead we got Antarctic weather. Then there was the time I forgot to pack Boo's stroller. Or the time I forgot the toiletries. The list goes on and on.
My saving grace is there is usually a Walmart within an hour's driving time.
It has gotten to the point where even remote family members ask if I have forgotten anything "this time". I am quick to remind people that I have to pack for three people (husband is on his own) not just myself. At least I haven't forgotten to put the girls in the car!
To compensate I tend to pack, well, enough for an expedition that would last 30 days rather than 2 nights.
This weekend we are going to our annual homecoming at our cousin's house. Although the weather report is calling for hot, humid and in the 90's I've made sure (this time) that if it snows we are prepared.
And if not, I have the nearest Walmart logged into the GPS.
The problem with packing is I always forget something. Like the time we went camping Shenandoah and I forgot Allie's underwear. The nearest store was over an hour away! Or the time we went to Disney and I packed for Florida weather and instead we got Antarctic weather. Then there was the time I forgot to pack Boo's stroller. Or the time I forgot the toiletries. The list goes on and on.
My saving grace is there is usually a Walmart within an hour's driving time.
It has gotten to the point where even remote family members ask if I have forgotten anything "this time". I am quick to remind people that I have to pack for three people (husband is on his own) not just myself. At least I haven't forgotten to put the girls in the car!
To compensate I tend to pack, well, enough for an expedition that would last 30 days rather than 2 nights.
This weekend we are going to our annual homecoming at our cousin's house. Although the weather report is calling for hot, humid and in the 90's I've made sure (this time) that if it snows we are prepared.
And if not, I have the nearest Walmart logged into the GPS.
Thursday, August 2, 2012
Yoga for the Special Child
A couple of weeks ago I saw information on Yoga for the Special Child. I admit to being hesitant about yoga. I tried it myself years ago and could NEVER calm my mind. I would always be thinking stuff like, darn I didn't paint my toes or crap look at the way the belly hangs over my pants in this position (not pretty) or worse, what am I having for dinner? Have you seen/read Eat, Pray Love? There is a whole chapter in there about meditation that could have been taken right out of my head.
But, off I went yesterday and met with a wonderful woman whose daughter has Down Syndrome. She used to take her daughter to Yoga for the Special Child and then became a Yogi instructor herself. I think that is the right term, Yoda doesn't seem quite right.
ANYWAY, as she sat there serenely as Boo buzzed around her studio she went over the benefits her own daughter had seen by using Yoga. The program was designed by Sonia Sumar, a woman whose own child had Down Syndrome. (You can find out more about the program here: http://www.specialyoga.com/)
She did warn me that it would take years of patience and practice to see a difference. She almost gave up herself and then one day her daughter 'clicked' with what the instructor had been teaching.
One of the biggest benefits, she told me, was that her daughter's constipation issue resolved.
Completely.
And she knows it is due to yoga. If they skip a week of yoga, her daughter suffers. But daily practice decreases any constipation suffering.
Now, I am not one to believe in fate or karma but I had never even mentioned Boo's bowel issues. I mean seriously, how could you in polite company?
I admit it, I will not / can not, stop looking for ways to make Boo have a week without a stomach issue. I have tried diet changes, medications, XLAX, suppositories, Miralax, surgery and physical therapy.
Nothing has worked. Every week we face the same cycle: Constipation followed by diarrhea caused by the medications to relieve the constipation. It is not a pleasant clean-up.
I asked what it was about yoga that would relieve IBS/constipation. She believes (in the interest of full disclosure, no scientific fact) that it has something to do with toning the muscles. That the twisting and stretching of yoga has a direct benefit to the bowel system and gets everything, well...moving in the right direction.
So while I am unsure if Boo will ever calm down enough to sit thru a meditation, she will be starting Yoga for the Special Child as soon as possible.
I hope we have better success than we are currently having with the PECS program.
But, off I went yesterday and met with a wonderful woman whose daughter has Down Syndrome. She used to take her daughter to Yoga for the Special Child and then became a Yogi instructor herself. I think that is the right term, Yoda doesn't seem quite right.
ANYWAY, as she sat there serenely as Boo buzzed around her studio she went over the benefits her own daughter had seen by using Yoga. The program was designed by Sonia Sumar, a woman whose own child had Down Syndrome. (You can find out more about the program here: http://www.specialyoga.com/)
She did warn me that it would take years of patience and practice to see a difference. She almost gave up herself and then one day her daughter 'clicked' with what the instructor had been teaching.
One of the biggest benefits, she told me, was that her daughter's constipation issue resolved.
Completely.
And she knows it is due to yoga. If they skip a week of yoga, her daughter suffers. But daily practice decreases any constipation suffering.
Now, I am not one to believe in fate or karma but I had never even mentioned Boo's bowel issues. I mean seriously, how could you in polite company?
I admit it, I will not / can not, stop looking for ways to make Boo have a week without a stomach issue. I have tried diet changes, medications, XLAX, suppositories, Miralax, surgery and physical therapy.
Nothing has worked. Every week we face the same cycle: Constipation followed by diarrhea caused by the medications to relieve the constipation. It is not a pleasant clean-up.
I asked what it was about yoga that would relieve IBS/constipation. She believes (in the interest of full disclosure, no scientific fact) that it has something to do with toning the muscles. That the twisting and stretching of yoga has a direct benefit to the bowel system and gets everything, well...moving in the right direction.
So while I am unsure if Boo will ever calm down enough to sit thru a meditation, she will be starting Yoga for the Special Child as soon as possible.
I hope we have better success than we are currently having with the PECS program.
Wednesday, August 1, 2012
It's Wednesday and this is what I wish I could say
Most 3YO are like that--Really? Because
Allie was once a 3 year old and she never escaped the back yard, the
car seat, the class room, etc... Allie must not be the neuro-typical
child after all.
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