Tag Archives: physical therapy

Eleven Days Seizure Free!

Remember that Connor kid I used to write about before politics, politics, politics? He’s still around and doing great.

IMG_6571Connor is getting closer and closer to walking. We can now hold both hands as he takes forward steps to us. At his last physical therapy session, his therapist decided to remove the seat from his gait trainer/walker. I thought she was nuts. I thought he’d slump down with the waist support under his shoulders and refuse to cooperate, but he maintains standing and he’s moving better than ever. We had it locked so he couldn’t turn but could go back and forth in a straight line. On a whim the other day, I unlocked the ability to turn and though he careened a little out of control into furniture and the walls (guess we will paint this room last) like Lindsay Lohan behind the wheel of a Mercedes, he had a blast trying to get around.

The best news is this:

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Though I started tweaking his diet back in December, we started the full-on modified Atkins diet around the second week of February. We haven’t seen a seizure since March 7. Today is the 19th.

The magic of some whipping cream and olive oil. If only dietary therapy worked for everyone. Thank God. Colorado looks gorgeous, but I do not want to take on refugee status while we wait for the rest of the country to catch up to 2014.

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Connor climbed up the stairs!

Connor climbed up the stairs this morning! I almost had a heart attack. It came out of nowhere as we only just introduced it in PT last week. We hadn’t even really worked on it yet. Sure, he goes over to the stairs and props himself up with his arms on the step. He’d even managed to go up one with assistance. But today I was on my computer and I glanced over to the stairs and there he was on the second step. I gasped and ran to the bottom in case he fell, but he just kept going. I did a whisper yell to get Chris out of his office, but not wanting to startle Connor or stop him. He would have gone all the way to the top but Chris stopped him since we are painting (ahem, correction, he is painting) the bedroom and there is stuff all over.

Just this week we had his IFSP meeting with his early intervention team to check his progress and set new goals. His physical therapy goal he was to have met by now, set based on the speed with which he met previous goals, was to be sitting independently with hands free for play. Instead he surpassed that and started crawling, pulling to stand and cruising. And now climbing the stairs!

Here is video of a repeat performance.

I’m wigging out like I just did 27 espresso shots.

Five months of great progress!

Connor’s first year was such slow development that I still can’t wrap my head around the last few months. I mean I vividly remember obsessing over him just lifting his head. It took forever. He sat somewhat independently around my birthday in October of 2012, and I thought here we go! But it was months before he could sustain it comfortably on his own. We put our old house on the market at the beginning of June this year. I vividly remember that his crib was still in the raised position as there was no worry that he would fall out. He could sit well, but couldn’t get into sitting on his own. It all started when he finally chose to roll from back to front. He went the other way on time, but refused to CHOOSE tummy time, leaving himself immobile. Since June 1, he

mastered pulling up to sit

become mobile through rolling and scooting

added consonants to his babbling

learned to crawl

pulled to stand

started cruising furniture

has shown recognition of more words

has become very (too) opinionated

and initiated his first game of peekaboo

Exponential progress.

His physical therapist almost cried when she saw him cruise. She had been away for a couple weeks as her granddaughter was having cancer surgery at CHOP for ganglioneuroblastoma. Ain’t life grand for our kids. Don’t worry. I’m aborting my angry Where’s God diatribe. (Side note: She said CHOP is the best for this surgery and they went in thinking they would be able to get 50%. They think they got over 90%!)

Cover of "Click, Clack, Moo: Cows That Ty...
Cover of Click, Clack, Moo: Cows That Type

He shows definite favorites in books — his two favorites are Click Clack Moo and Hand Hand Fingers Thumb. If I start reading from them, he comes crawling over. The other day I asked him if he wanted to read Click Clack Moo and he crawled out of the family room into the playroom to it and looked up at me expectantly (after a brief scrunched face short cry because we startled him with our enthusiasm).

I’ve given up trying to get the detailed results about his MRI from Boston. We got the standard report of no growth, but we were supposed to finally get details on number of tubers and locations so we can target potential deficits etc. But as no one ever gets back to me when I leave messages regarding that particular report, I guess we have to wait until we go for our next TSC study visit in February or March when we will schedule a visit at the clinic. Not very happy about that.

Connor still refuses to feed himself, and when we give him finger foods, he just destroys them. We’ve tried cracker type food items, but he crushes them, so his physical therapist suggested beef jerky. It’s easy for him to hold and he might like the taste. And wouldn’t you know, he sucked on that Slim Jim a couple times and bit it into pieces. He only swallowed one piece, and that was by accident, but still progress. Slim. Jims. If you had told me I would be feeding my toddler Slim Jims…

He also still won’t get off the bottle, which we think is another one of his stubborn things, kind of like refusing to roll over. His speech therapist has been pushing a straw with a squeeze bottle, since sippy cups get swatted across the room. He actually let me put the straw in his mouth without fighting me yesterday for the first time. Maybe we’ll get rid of these bottles some day after all.

I learned a valuable parenting lesson last week when we went to the North Georgia mountains with my parents. While we have had to deal with crazy TSC stuff, as far as the normal baby health issues are concerned, Connor has never really had any issues. He’s barely even had a cold. Well, last weekend we had a major bout of constipation. I never understood what the big deal was. They go eventually right? Give them some prune juice or whatever. My bad. Sorry about the flippant attitude. Almost two days of fussing and irritability. He went an entire day with no food or drink whatsoever. It wasn’t until the next morning when he willingly took his meds that I had the brilliant idea to give him milk, water and juice with the oral syringe. My mom shook her head at one point and said, “When people ask what we did this weekend I can tell them we waited for Connor to poop.” And so I deemed the weekend PoopWatch 2013. I’ll spare you further details, and only say that a couple days later I was looking for a cork.

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Toys are for chumps.

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Let me out! I promise not to try and make a break for the woods again!

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New cabinets to explore.

Our trip to the pumpkin patch a couple weeks ago:

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Please click on the Top Mommy Blogs icon to the right so I can move back up in the rankings!

To Quote Ice Cube, “It Was A Good Day!”

Yesterday was a pretty good day. We had our first buyers come through and check out the house. A man came with his realtor in the afternoon, and he brought his wife back in the evening. Even if they don’t buy, that feels like a good start. We had another guy come through today. I got the impression he might be single, as Chris was when he bought the home, so GOOOOOO bachelor pad! I had intended to leave, as the realtor said she would call when they were on the way, but she didn’t and he blocked me in. Connor and I hung out in the 180 degree Georgia heat in the meantime. Fingers crossed. Making the bed AND sweating.  Somebody come buy this house!

Yesterday was also a good day because Connor did something new. He has been able to roll over for quite some time. But he really only uses it to get off his stomach, which he doesn’t tolerate for very long. He can actually scoot backwards on his belly, but I have to block him in to keep him from rolling over. Well, yesterday. for the first time, Connor rolled back to front. I’m not sure how long I stared at him before I processed that it really happened.  Chris finally turned to me and said, “Did he just…” Then he began to scoot backwards. A voluntary attempt to be mobile! Score!

I just attempted to do some physical therapy with Connor, but he refused to cooperate and would just collapse in every position. I swear he smirked at me, too. He definitely knows how to play us. He knows we are way too tired at 3 a.m. to parent properly, so he puts up a fuss and gets to snuggle into bed with us. He always smiles real big the second we set him down.

I really want to shower after today’s sauna session, but I’m afraid another realtor will call…

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Don’t forget to click the link at the top of the page and enter my Dermagist giveaway. Time is running out!

Anybody Want to Buy a House?

IMG_3661Connor had a good report from the physical therapist today. She was excited to hear he is pivoting in the sitting position, and he was also much more cooperative in making transitions. We’re at a point where he can maintain a crawling position, rock back and forth in it, and reach out for objects, but he needs assistance getting into it. He’s getting better at sitting back down on his own. He can also maintain a standing position, but needs assistance transitioning into that position as well.

Working on his physical therapy just got a whole lot more aggravating since we put the house on the market this weekend. Decluttering the house meant moving all his PT equipment into the garage. Making myself do PT with him is already hard enough–not because I don’t love spending time with him–but because therapy isn’t exactly what you envision doing with your child when you decide to have one. Going to get something from the garage really shouldn’t be that big of a deal, but that’s me. Not to mention, my attention span has become so awful that a million things distract me on the way and I forget what I wanted.

I spent a good portion of today cleaning scuffs off walls and doors and trying to turn the shower floor back to a non-vomit inducing color. Plan of attack for the shower: Chris laid a coat of Comet with bleach on it at 6 a.m.  and every so often I run some water and re-cover the surface. Twelve hours of this should do the trick, right? This is pretty much the last resort.

A couple did a drive-by on the house and I got down on all fours ninja-style to watch them watch the house. My life is pretty exciting.

Yesterday we got so carried away working on the house, that changing Connor’s diaper slipped our mind for an extended period of time. It wasn’t until he was bouncing in his jumperoo, and the downward motion would cause a cascade of urine to gush out onto the floor from his drenched diaper. I’ve always been grateful that the state of his diaper has never been a source for fussing, but I’m realizing that with my easily side-tracked state of mind, it would actually be beneficial if he’d give me the heads up once in a while. Yes, I really just blamed my baby for over-wetting his diaper.

I’m very rarely seeing any seizures with eye movement, but we’re seeing 1-2 a day in which he slumps down, turns his head to side, puckers out his lips and stares. They last 10-20 seconds, and he snaps right out of it.

Fingers crossed we start getting people looking at the house soon. I really hate making the bed for nothing…

Since I didn’t post much during May due to hosting so many guest bloggers, here are some highlights from the past month:

We went to Florida to visit Chris’s parents.

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Connor went on the swings for the first time. The swing was hot so I finally got to prove to Chris that it IS good to keep “crap” in the trunk.

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Connor rode up in the cart for the first time.

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We watched Cousin Cody play baseball.

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We had coffee and watched trains with my parents in downtown Norcross.

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Seriously, it’s making me sad that nobody is entering my giveaway. You don’t want to make me sad, do you?

Focusing on Today

Day 22 of Guest Blogging for TSC Awareness Month

By guest blogger Cassie McClung  (Houston, Texas)

Avery1My husband and I learned that we were pregnant in the late spring of 2007. Married just two years, we were a bit surprised, but honestly thrilled beyond words. We had a ton of fun preparing for our new addition, even despite the fact that I was so horribly nauseated for the first five months that I lost 12 pounds. Her development, however, was always right on track, and every test and check-up went well. Just a month before her due date, we decided it would be fun to get the new 3-D ultrasound photos that we kept seeing at the doctor’s office. We ended up trying three different times. Every time we went, the baby had her arms up around her face, completely covering every feature. The first time was kind of cute. The second time was a little frustrating. The third time I asked the technician, “Isn’t it a little unusual to have her arms up every time?”

“Yes,” she said, flat out, “I’ve never experienced this before.” I remember my heart went into my throat. Could something be wrong? The doctor dismissed my concern later, telling me not to worry. I tried not to.

The next thing I knew my delivery date was around the corner but the baby was in breach position, so a C-section was scheduled. In late January of 2008, we were blessed with our beautiful daughter Avery. The surgical delivery went well, but within an hour of her birth, I was surrounded by a number of doctors with very serious faces.

They were concerned because it appeared that our precious newborn was having small but frequent seizures while under observation in the nursery. They bombarded me with a million questions at once. “Was she seizing in utero?” is the one that still stands out. WHAT?? What does that feel like? This was my first pregnancy. She kicked a lot, does that count? Were there other signs I should have noticed? I was stunned. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. I remember my Avery2delivery doctor turned to me and said, “I’m sorry,” before walking out the door, not to be seen again.

My husband and I were absolutely shocked and terrified.There was no holding, cuddling or bonding.  I tried to recover quickly from surgery, all the while imagining my baby girl across town under the care of who knows who, doing who knows what. Complete and utter torture. This was when I started thinking about the genetic condition that runs in my husband’s family. We were told previously by family members that we should not worry about it…that it was basically no big deal. Then I heard someone at the hospital say it for the first time. TS. Tuberous sclerosis. We hadn’t a clue.

I broke out of the hospital early and rushed to the N.I.C.U. I couldn’t believe how tiny she was, hooked up to so many tubes…all of the nurses knew her name. My Avery. They already knew so much about her. They’d spent so much more time with her than I had. It felt so strange. At first glance, she looked pretty and pink, sleeping peacefully like a typical newborn. And then I saw it. All of a sudden, she puckered her little lips, turned bright red, and her right arm extended straight out. It faded quickly, but there was no mistaking that she was seizing. Nothing could ever have prepared us for what happened next.

We were shown into a large meeting room across the hall. A doctor sat across from me and five or six med students and residents sat next to her. I’ll never understand why they were invited…why they needed to sit and watch this intrinsically personal experience unfold. They never spoke, just watched. The doctor slowly explained to us that Avery had been born with a rare genetic condition called tuberous sclerosis. Benign tumors grew willy nilly in her brain and heart. She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.

Avery3So that’s when Avery’s brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that’s when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive: a hemispherectomy. The two sides of the brain would be disconnected from each other, and large portions of “bad brain” would be removed from the left side. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.

This is the part where I have to pause and breathe. Because more than two years after the fact, I can still feel the residual effects of this man’s words pulsating through my mind and body. I can still close my eyes and remember the breath-stealing sobs I cried as I said goodbye to my week-old daughter and heartbrokenly handed her to the nurse that would take her to the operating room. We waited hours and hours, hardly breathing, wondering if we made the right decision. It was, and Avery did beautifully. Her strength amazed us. It still does! She was in and out of brain surgery three times in her first month of life. She came home after one month and five days in the hospital, eating on her own, cooing and wiggling. The seizures had completely stopped. We had renewed hope, renewed faith. Her future appeared so much brighter.

We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better– i.e. giving the “normal” side of her brain time to take over tasks that the opposite side can’t handle anymore…and we couldn’t have done it any earlier!

Avery actually needed two more brain surgeries, at three months of age and at five months, before the seizures stopped returning. She continued taking Vigabatrin (Sabril) for the next four years as a back-up, in case they did try to come back. It was the only drug that had ever slowed down her seizures before.

For four years, Avery thoroughly enjoyed a total break from seizures, as did her parents. We were busy attending to her other many needs, like the fact that the surgery had resulted in the left side of her body being extremely weakened (hemiparesis). No one ever mentioned this side effect before surgery. It was then, and is now, our biggest challenge among many. When she was still not sitting up by herself at 18 months and after lots of therapy, we knew we needed a lot more help. We were lucky enough to find an amazing, private special needs preschool that had experience with children just like Avery. They taught her to sit and scoot. They taught her sign language, how to drink with a straw, and how to use a fork and spoon. And they continue to teach her now. I don’t know what we’d do without these amazing teachers that love my daughter for exactly who she is, and not what she lacks.

Sadly, this past year the seizures returned. We were devastated of course, but not surprised. We knew it was a miracle that they stopped for as long as they did. They are under Avery4control again now with new meds: Onfi and Vimpat. She seems a little more tired now, but overall a happier disposition.

Walking is still our biggest goal. The left side of her body just doesn’t want to cooperate! Although still extremely developmentally delayed, her cognitive skills continue improving. No words yet, but lots of sounds. We have three PT’s, two OT’s and two SP sessions every single week, on top of her school “work.” Avery works harder than any kid I know, and she does it with a smile. She has taught us endless lessons about love, grace, and the simple joys in life. Almost two years ago, we were blessed with another sweet girl! A healthy, TS free little sister, who dotes on her older sister.

As many special needs moms have said before me, it’s impossible to focus on the future right now. In order to get there, we have to focus on today. Today she is healthy, happy and working as hard as she possibly can to reach her potential. What that is, no one knows, but we will move heaven and earth to get her there.

Please check out Cassie’s blog at www.abubslifeblog.blogspot.com