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06.23.16 Mac Update

Geez, almost a freaking year without anything to say? Bad mommy.

Well, actually I’ve just been lazy (and maybe a little busy). Our Mac Teddy is now a three year old with the attitude to go with it.

He’s in daycare and also started a half day pre-k class this year, which he LOVED going to before we had to take summer break. I’m hoping that enthusiasm for school will stay with him.

Following up with the last post - he did end up having tethered cord so he had surgery which was so heartbreaking to watch his recovery in the hospital. And although I know his back was hurting from the actual surgery, I think the worst of his pain was from the catheter they had to leave in for 24 hours after the procedure. He did not sleep AT ALL while it was in him. The second that 24th hour hit and the catheter was pulled out, he KTFO and slept so soundly, the poking and prodding from nurses didn’t even phase him. He has healed beautifully but still needs to wear AFO’s (just got his second pair because he outgrew the first).

In November 2015, Mac had a seizure. Scariest experience ever, maybe even more so than his birth. That seizure was written off as a febrile seizure (which typically happens in babies/toddlers with high fever) because he had enterovirus (really bad cold) and developed an ear infection with very high fever. Unfortunately he had another seizure right around Christmastime, also while he had an ear infection/cold. He was put on an anti-seizure med called Levetiracetam (commonly Keppra). He got an EEG which showed abnormal activity I believe in the left side of his brain. He seemed to be doing well with the meds, but then he had another seizure in February (again with an ear infection/cold) . At that point, his medication was upped to the max amount for his weight. We thought we were in the clear until a week ago when he had another seizure, except this time it lasted about 90 minutes. All the other ones were about 10-15 minutes. He wasn’t breathing well so they had to bag him (luckily no intubation) and was pumped full of way more medication than ever before to stop the seizure. Once his breathing normalized we were transported to a larger hospital where we stayed for observation. He has now also been prescribed Oxcarbazepine (commonly Trileptal) in addition to the Keppra. He was pretty loopy for the several days after we got home from the hospital but today he seemed like himself, laughing and dancing, playing in his box of beans and pushing his baby stroller around.

On a brighter note, he is doing really well learning more sign language and he has even started to say da-da more and ga-ga (grandpa and/or grandma). Next on the list is potty training! God help us all, lol. So, that’s it for now. I’ll post some pictures of this little turkey in a bit.

#keppra #trileptal #toddlerseizure #orthotics

Oh my goodness!

08.05.15 Chauffeur Mom on Duty

That’s kind of what I feel like at this point. Mac went to his first “day” of daycare yesterday. By day, I mean only 2.5 hours. And I stayed with him the whole time. He’ll be going half days (4 hours), two days a week but I wanted to stay with him the first day just because he is a sensitive little man and well, I probably would’ve just sat in the parking lot anyway fighting myself not to go right back in and get him. It will be a good break for me and he’ll get some social activity time with other little people.

On the other days he isn’t in daycare, he will have physical, speech and occupational therapy. One on each day. So the car has been somewhat of a second home :)

Mac had his 2 year developmental assessment in July. He is still very developmentally delayed according to their testing, but the speech pathologist who was conducting the testing did say that the test does not take into consideration any visual problems which of course skews the results for Mac. Not trying to excuse the low scoring because he DOES need a lot of therapy, but he is a bright, engaging little boy and I take those type of test results with a grain of salt.

At his assessment, Mac was also officially diagnosed with cerebral palsy (CP). His is a mild form of spastic diplegia, which means he has muscle tightness in both legs. We were told there was a high chance of CP when I was in the hospital and given his problems with balance and walking, always had the idea that he probably did have it in the back of our minds. But no one had ever diagnosed him until now. I have to admit, even though I figured he had CP, hearing the doctor say it out loud - still felt like a knife to the heart. Spastic diplegia is not a degenerative condition - meaning it won’t get worse as he gets older, but it won’t get better either. Some things that will help with the muscle tightness though include horseback riding and hydrotherapy (swimming, etc) both of which we will look into in the near future.

Mac is actually walking very well with and without his AFO’s. We keep them on almost all day and his PT says his feet are growing beautifully. Pretty soon he won’t need the strap across his shins and hopefully we can downgrade to just orthotic shoes.

Still patching his right eye to strengthen his left but may start talking about having surgery to correct the strabismus in a couple of years.

At the end of this month, Mac will have an MRI to check for tethered cord syndrome (https://en.wikipedia.org/wiki/Tethered_spinal_cord_syndrome). Though most of his symptoms are probably attributed to the CP, his neurologist wants to rule out TCS to be on the safe side. Even though its for a good reason, I am scared as hell that he needs to be put under for the MRI. Flashbacks to him after his second brain surgery keep jumping in my mind. He was given morphine for pain relief but nobody knew he was allergic to it until his heart rate dropped so low, I really thought we were going to lose him. Ack - anyway, I know they’re not going to give him morphine but it’s still pretty effing scary.

Jeez this is getting long! So, it seems like this post is nothing but doom and gloom, but really it’s not. Mac has grown so much and he’s still pretty happy go lucky. Sure, he has tantrums (teeny tiny ones compared to other kids I’ve seen) and he’s got a stubborn streak but it’s all great! He needs to be his own expressive self and we love it. When I start boohoo-ing about what I think makes life so unfair, he’s the one that makes it all better. Like when he walks up the stairs by himself or signs a new word that I didn’t think he was paying attention to or even just laughing hysterically at his own fart! It really does make all the worries/fear/frustration worth it.

Until next time ~ hopefully sooner rather than later!

June 2015

Have you noticed he likes to grab his clothes when taking pictures? :)

May 2015

April 2015

He LOVES his “luxurious” blankets

March 2015

Photos from this year - February 2015

This was taken right before Christmas while out to lunch with a friend. I just want to eat his little face right off!

Oh Hi There

It's only been six months! I kid, I kid. Though I haven't made a new year's resolution to update more frequently, I do have the best intentions of doing so. I am actually thinking of moving the blog to another site but that probably won't be for awhile.

Mac has been doing really well. We go to physical and occupational therapy once a week and also have an OT assistant from the school district come to the house twice a month. I'm still in the process of setting him up with a speech therapist. We're in our 3rd semester of music classes and he has so much fun when we go. It's once a week for about an hour and he loves listening to the cd of all the songs we sing in class. Lately he's really been getting a kick out of asking us to sing him songs. I think he'd be perfectly happy if we just sang songs to him all day long.

He is walking now, usually holding onto someone's hand, but he will and does stand up and walk to you if you ask him to. Just in the past couple of days, he has walked from one area of a room to another, without J or I prompting him which is HUGE. Usually his motivation to walk anywhere is if I or J are at the end of the trek.

He says a couple of words (mama, dada, open and night-night), uses sign language (mommy, daddy, drink, eat, bath, please, more, shoes, all done, diaper, cookie, song), shakes his head for no, rocks his whole body for yes (haha), points to parts of his body (eyes, nose, lips, ears, head, hair, tummy, knees, toes) and I just recently taught him to put his hands on either side of his face when I say "oh my goodness" (kind of like the picture of Macauley Caulkin in Home Alone). It really is cuter than I can explain. We haven't had any problems with his shunt and he has gotten quite a bit taller. I mean, he's still very petite for his age, but he's stretching out, looking like a little boy and not my chubby little baby.

He loves eating fruit/veggie pouches, anything with rice (definitely my kid) and Annie's cheddar bunnies and graham crackers. For special treats, if I ask him if he wants "num num" he chomps his teeth together which makes me want to give him even more, lol. Also, if he smells anything cooking around his mealtimes, he'll go "mmmmmm". Freaking hilarious.

We're exactly a month shy of his 2nd birthday and can't believe it's already been 2 years. We are so thankful that he is such a fantastically happy little boy. He's so easygoing and is quick to smile, I just love it. Although, now that I've said that, the terrible two's will probably kick in tomorrow.

Will update again soon :)

16.5 Month Update

Geez, where does the time go?

A lot has been going on with our little Mac attack. He's had 3 haircuts and just cut 4 new teeth for a total of 12 chompers. He is crawling on all fours and cruising along the back of the couch and coffee table like a pro. He's still a little freaked out to stand on his own without the assistance of our hands, but we're hoping he'll gain a little more confidence in the next couple of months. I'm still getting used to him being so mobile on hands and knees!

He's made the transition to big people food. Rice, noodles, ground meats, eggs, avocados and mashed potatoes are his favorites so far. He still has trouble with firmer vegetables and fruits but he loves his bananas and greek yogurt pouches. And he goes bonkers for his cheese puffs. He does get 3 oz of formula before every meal and snack (4 total). He has started drinking some whole milk during the day as well as diluted juice and water.

Mac now weighs 19 lbs. I just measured his height about a week ago on his growth chart but can't recall the exact inches. And since his growth chart is in his room and he's napping right now, there's no way I'm going to disturb that adorable beast. As far as sleeping ~ this kid is a maniac in his crib. He thinks it's pretty funny after I put him down for a nap or bedtime to roll around like a possessed monkey, pounding on his crib rails, sitting up and clapping and laughing his head off. He has started to prefer falling asleep on his tummy and rubbing his face in his blanket. We have good and bad nights but for the most part, he goes to bed at 8:30pm and wakes up about 7am.

His 1 year follow up appointment with neurosurgery is coming up in a couple of weeks. I can't believe it's already that time. We haven't had any issues with his shunt so fingers crossed everything still looks good on his MRI. He also has an eye appt in July as well and we're hoping we can get a new prescription for his glasses. He's been doing pretty good with keeping them on until he accidentally touches them, then it's game over. We're still patching his right eye 1-2 hours a day so his left eye gets stronger and doesn't cross. He has been going to physical therapy twice a month and occupational therapy at our house twice a month. We just finished up our first semester of music class and he loved it.

He really has been working so hard and learning new things at a rapid pace. Oh, he says "mama" now! He doesn't quite associate it with me yet, but I think he's starting to get it. Grandma taught him how to point to his forehead when you ask, "where's your head?". We also touch foreheads when I ask him for a "popo" (which means "kiss" in Korean).

I think that's it so far. I will try to update more frequently, but no promises. We're going to be busy packing up and moving to our new house!

I have two chompers now.

Merry Christmas and Happy New Year!

Sitting up is fun! ~ 10.5 months

Malachi's first pair of glasses!

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