Monthly Archives: August 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

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!

A year ago

A year ago today Boo had surgery to release a tethered spinal cord. I will never forget how this one thing devastated me. All her other health crisises were just that, a crisis. I had to keep calm, carry on and be the rock for not only Boo but for every other family member too. 

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.


She made a speedy recovery. On day 2 of laying flat, the minute she was allowed to sit up, she did.  And promptly tried to break out of the crib. She loved the Princess Carriage (I put in a lot of miles walking the halls).


So, Doctor #1 was right. The surgery went fine. He was wrong about some things. Turns out that Doctor #2 was right, the tethering was much more severe than he thought. The surgery lasted much longer and was not as “quick and easy” as he thought it would be.

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.

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.

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!

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!

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.

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.