Guest Post – Mixed Up Mommy

Savanna's Journey

Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians.  I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career.  Parents are almost always blindsided by such a diagnosis.  In some cases, a family has warning of a symptomatic onset of this epilepsy.  All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.

The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We…

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A mommy fail and cognitive growth

I was on such a high yesterday about Connor climbing the stairs that I could have been the mayor of Toronto. Of course, this morning brought the sobering (though still awesome) reality of this development. I thought I had secured him this morning when I ran upstairs to get something. I stayed for a couple minutes talking to Chris about his progress painting the master bedroom, then opened the bedroom door only to find a toddler charging at me from the top of the stairs. It appears I failed to secure him properly and he followed me up the steps. Bad mommy.

Problem is that we actually tried installing a gate at the top of the steps but it didn’t really go so well as it is wedged between two bannisters and no wall. Same at the bottom. The bannisters just sort of start to push outwards as the door is tightened and doesn’t seem particularly safe, so we will just have to be sure to secure him away from the stairs all together.

But in all my excitement about his motor development, I forgot to talk about his cognitive development. I think I did mention how excited I was when I asked him if he wanted to read his favorite book and he crawled into the play room straight to it. But I have also seen an unbelievable change in his ability to manipulate apps on the iPad. We have several that we downloaded a long time ago at the suggestion of his therapists to teach him cause and effect, but he really just banged on the screen as we tried to help him manipulate them.

He did best with this one, Baby Piano, as it actually does respond well to random banging. In the last couple weeks he has had a renewed interest in it with more careful tapping of the keys.IMG_5615

He also figured out how to manipulate Peekaboo Barn independently. It’s pretty basic, just tap the barn door to open it and a new animal appears each time making sounds. But I could see that he was actually waiting to see what animal  would appear inside instead of just hitting the screen.

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A more recent download is the Crayola App which allows him to use his finger to color. He just has to touch it to make the colors appear, and I only helped him as far as changing colors for him. And he seemed to notice that I was changing the colors.

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But this was the one that blew my mind. During the IFSP meeting this week, his speech therapist put Itsy Bitsy Spider on for him. We hadn’t used that one with him in a long time as it’s slightly more involved with moving characters and multiple places to tap to make things happen. I’d never seen him use it very productively. We either guided his hand or he banged randomly. Without even having seen it  for weeks and weeks, he began to carefully watch the spider and tap it at opportune times to make it interact. I could barely concentrate on the meeting I was so shocked.

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I had a really vivid dream last night that he started talking. Maybe it was a premonition 🙂

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!

Halloween Week in Pictures

Lots to blog, and it’s coming, but for now, Connor hopes you had a great Halloween!

Also, It’s November 1 so Epilepsy Awareness Month starts today!

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Connor was the hit of music class this week in his cow costume. I think it was the mystique of him crawling and his face barely being visible.

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We took a photo op tour of some of our decorations before they get stored for the year. He adored playing in the front yard so much that he was furious when I picked him up to go inside.

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And Connor’s first trick or treat. The only thing more adorable than a cow is a cow that drives. Since Connor isn’t walking just yet, he rolled in style. But I tell you, it was one more thing that drove home the challenges of people in wheelchairs when we had to skip homes that were just too hard to get to the door.

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I just wish my version of a peacock looked a little more like the one on the box. I choose to believe it was an unflattering cut.