2.05.2020

K Update 2020

So much for popping in with updates more often!  It has almost been an entire year since I was last on here. I have to admit, between homeschooling and taxiing older children around to multiple extracurriculars I don't have time for blogging.

As far as PJRT goes K is doing amazing. We haven't had any heart concerns in over a year.

Since my last update new news has come up though.

First: I've been actively pursing a diagnosis for K's learning disability(ies?). We had IEP testing done last February, it showed she was just under or in the low end of "average" in most areas and above average in a few areas.  She did not qualify for an IEP, which is fine since we homeschool and I don't care to drive her that far for extra resources.  The next step was made after her 8 year well child exam, our pediatrician referred us to Alternative Behavior Strategies for a diagnosis by a psychiatrist. K was officially diagnosed with Level 1 Autism just this January. We are now seeking therapy to help K learn, our specific concern is her language barriers, while she can, and willingly will (almost too willingly lol) speak appropriately, there are barriers there that are hindering her ability to read and understand language, which is holding her back in reading, literature and language arts in a big way.  We are also starting a vitamin regimen and gut healing hoping to help with this.  My reasoning for this is I strongly believe her heart medications played a very big role in her neurological development, not just in how they affected her brain itself as it developed but also in how they affected her poor tummy, and I'm a big believer in the impacts of gut health.

You can read  more about the severity levels of Autism here: https://www.healthline.com/health/levels-of-autism#level-autism but here's K's specific level:
People with level 1 autism have noticeable issues with communication skills and socializing with others. They can usually have a conversation, but it might be difficult to maintain a back-and-forth banter.  Others at this level might find it hard to reach out and make new friends. According to the DSM-5, people who receive a diagnosis of level 1 autism require support.
Symptoms relating specifically to K:
  • ability to engage with a person but may struggle to maintain a give-and-take of a typical conversation
  • difficulty planning and organizing (K hyper plans and hyper organizes)
People with level 1 autism often maintain a high quality of life with little support. This support usually comes in the form of behavioral therapy or other types of therapy. Both of these approaches can help improve social and communication skills. Behavioral therapy can also help develop positive behaviors that might not come naturally.

Initially her pediatrician told us we'd need to do x-rays in two years and very likely have surgery to place metal plates in her knees to correct her.  In a desperate attempt to avoid surgery I took K in to see our family chiropractor.  I never believed in chiropractic care before, until we found a truly amazing chiropractor who doesn't just snap and pop you and create more issues, this man is our hero. He doesn't snap and pop, instead he manipulates and maneuvers your joints to adjust them back into their rightful place. Typically he says "OK, you're done, see you when you feel you need me again!" and it's months, or over a year, before we're back, unless what he corrected was causing severe problems, in which case he'll have you come back 1-2 weeks later for one more adjustment to get everything correct, but after that you're good to go for months or a year, or maybe longer!  When I say "family" chiropractor it's because we learned having certain kids adjusted helps them to poop (sorry, there's no better way to say that), certain ones an adjustment betters their attitude, and certain ones sleep a whole lot better after an adjustment, so we take advantage of the "family deal", which is cheaper than 2 or more individual appointments, and we take everyone in. I asked our chiropractor about K's knocked knees and he examined her, watched her walk, watched her movements and said "No surgery! We can fix this!", K has very flat arches, and her body is compensating by rolling her feet from the outside edges in when she walks which in turn has turned her knees in. He fitted her for arch inserts for her shoes, they'll help her feet form a proper arch and with her no longer rolling her feet when she walks her knees should turn back out where they should be, it's a 4 year treatment plan, very minimal visits to the chiropractor for it, and arch inserts that fit 2 shoe sizes, and with the super slow rate my kids feet typically grow we just might get 4 years out of one set of inserts.

So, typically scoliosis is passed from mother to daughter. With my mom having scoliosis, I have it, and my only sister has it, so the pediatrician has been watching K closely since she was a toddler, predicting she'll have scoliosis to some degree.  When K was 5 her pediatrician suggested K's curve to be at 4 degrees, she could only just barely see the curve when K bent over but not at any other angle, she measured it the best she could without an x-ray and came to the 4 degree guess, at her 8 year well exam it had definitely progressed, when K bent over the pediatrician could see the curve without question and as K rolled to an upright position the pediatrician watched her back curve in a slight "S", so it's worse than it was at age 5 without a doubt, but without an x-ray we really cannot know just how bad it is.  Puberty is the time to treat so we're playing the waiting game while watching closely. My sister had to have major back surgery to correct her scoliosis so I have been quite stressed over K. In another desperate attempt to avoid surgery, and a somewhat desperate attempt to avoid back braces I asked our chiropractor about it.  I'm telling you, this man is amazing.  He said he can usually lessen the degree of curvature in scoliosis patients without surgery or back braces, yay!  He'll x-ray K when she's 12 and we'll go from there, but if her curvature is 7 degrees or more he will definitely start treatment, which includes the use of a gravity table.

Good news: K absolutely loves dance, she has been keeping us busy with Ballet, Hip Hop, Tap, Jazz, and Tumbling and she does very well in all of them, she's really proud to have a near perfect cartwheel, handstand, amazing headstand, and backbend kickover, she's working hard to get a back walkover down now. She loves soccer and plays in the city league every fall, she thinks she likes softball but so far has only tried coach pitch level, we shall see if she still likes it this year after trying peer pitch, and she has been begging to try basketball, I've only held her off for scheduling sake because this mama is feeling super stretched thin between her and her brothers playing all these sports and dance classes.

So, there's our past year in somewhat of a nutshell.

2.19.2019

K Update 2019

I was so sad to see the last time I posted here was in 2017!  Life has a way of getting in the way I guess.  We built a house, sans contractor, just my husband and I, between Fall 2017 and Fall 2018 so that consumed most of my time.  We finally finished and moved in October 2018!  But then I also began homeschooling 2 of my 4 children so again, another time consuming life moment.

Kimber has been doing amazing since her ablation in December 2016!  She gave us a bit of a scare last summer, 2018, during physical activity.  She would get very winded and extremely flushed in the face and beg to rest for a bit complaining her heart was beating too fast.  Of course I didn't have a stethoscope, or any device, with me to check on her heart rate or rhythm because we were at her soccer game or at a school function that I was unprepared for so I don't know exactly what was going on, I checked her rate with my hand on her chest and finger on her pulse but those only helped in letting me know she wasn't beating super out of control, I wish I could have heard the rhythm or been able to count the rate exactly.  As it is we brought it up with her pediatrician at her 7 year well child and she suggested an EKG just to make sure all was well, I'm super happy to report the EKG came back NORMAL, not normal for K but rather normal for any child, no PJRT to be seen, and of course no SVT as she was perfectly calm and relaxed.  For now we assume she is still SVT free and PJRT free, doing well and growing perfectly.

Can you believe this baby is 7?!  She turns 8 this summer!  Where did the last 7.5 years go?  She lost her first tooth a few weeks ago and has two more loose teeth getting ready to come out.  She's sassy, sweet, endearing, caring, and so gracious.  And she's growing like a weed.

Our only concerns with K are to do with education and her learning abilities.  She shows signs of possible Auditory Processing Disorder, which has been mentioned may be due to her old mini stroke in early infancy, the Neurologist doesn't agree but school psychology, speech pathology, and the special education director all think this may be something to keep in mind when treating our sweet girl.  She's very smart with math and spelling, her hand writing is pretty good, but her reading and comprehension is very low and she has problems with her memory.  Some things that have helped her immensely have been Ballet technique classes and Hip-Hop dance classes, she does very well in dance and is very meticulous with the techniques.

I hope to pop on here more often now, hopefully I can actually make it happen!  I pray everyone who is following is doing well, especially our heart friends.

2.07.2017

CHD Awareness Week 2017

It's that time again!

It has been 3 years since I did a PJRT Sisters and Brothers spotlight so I thought it time to do it again!  You'll see a lot of new kiddos and a few updating from 3 years ago :).
Here's the link to our tab where these daily posts will appear:  http://thestoryofababywithsvt.blogspot.com/p/my-pjrt-sisters-and-brothers.html
You will also easily find this in the pages tab above labeled "My PJRT Sisters and Brothers" :).

12.07.2016

Surgery Day 12-7-2016 Update #7

We're home!  Kimber ate and drank everything in sight happily.  Nothing held her back from leaving.  They came and did an EKG around 3:00.  The second the machine turned on I knew it was different, I have never, ever seen an EKG like it from Kimber.  It.Was.Perfect.  I cried, and asked for my own copy, the girl didn't understand at first, she kept saying "it's Ok!  It looks really, really good!" I explained that I knew that and that was why I was crying, I was just unbelievably happy.  We were released soon after that.
The next 2 days kimber has to take it easy, nothing over exerting.  Then for another 3 days she just has to refrain from sports and exercise (aka riding bikes, climbing, running).  None of this is for her heart, her heart is absolutely fine, it's just for her incision sites.
We see Dr. P for follow up in 8 weeks then he won't see us for a year, after that if she's doing well he's done with her!

Kimber came home to a Get Well card that her kindergarten class made and sent home with Big Brother.  It was so sweet and she was so excited.

Here are some fun pics from today.  Including the wonderful, perfect EKG.











Surgery Day 12-7-2016 Update #6

Kimber is doing really well.  She downed a slushy in less than 30 min and begged for more, she has been cleared for food and requested Ramen Noodles but the nurse won't let her have those while laying completely flat so she had to settle for Mac and Cheese, I hope she eats it better for them than she does at home.

She's on flat bed rest for another 3.5 hours, they'll do an EKG to check on things around 3 and then we should be going home around 4.  She's a fighter, and very stubborn, she wants to sit up so bad, we've had to forcefully lay her back down a few times.  The worry is bleeding too much from the entrance sites but luckily for her Dr. P was able to just use her veins and didn't need an artery to get to her pathways so the risk of bleeding is a bit less than it would have been.

Right now she is watching one of her favorite movies, The Hobbit, yes it's a love of hers, her bonding thing with Daddy, she is happy as can be at the moment.

Surgery Day 12-7-2016 Update #5

A little groggy and quite stubborn but she's drinking a lot already and asking for food, which is great!  She has to lie flat for 5 hours...less than 1 hour in and she's already fighting it, ugh.  But once we're out of PACU and on the floor we will pull out fingernail polish and make her very happy.

Surgery Day 12-7-2016 Update #4

She's done!  3 hours.  She for sure has PJRT, was very easy to go in and out of SVT and the SVT stopped immediately upon freezing the area, he froze 5 points, they are the blue spots on the picture below, which is an image of the right side of kimber's heart.  It's not likely the svt will come back, it's meant to be a permanent fix and if not we will know within a few short weeks.

We are now waiting for her to wake up in PACU and then we'll get to see her.  We will be here another 5 hours keeping her still to prevent bleeding.

Surgery Day 12-7-2016 Update #3

The nurse just called.  Kimber has been a sweetheart, cuddled the nurses and teased with them until she was put under and she said she went to sleep like a dream, the perfect patient.
They're still mapping her heart but as of right now she went right into SVT immediately and since has been in and out of SVT very quickly, which is a very good thing because without SVT the surgery can't happen.
Before surgery Dr. P explained that it's best for the pathway(s) to be all on the right side of the heart rather than the left and that he was hoping to freeze the pathway(s) rather than burn.  The nurse just reported that so far it seems all is indeed on the right side and he should be able to use the freeze method.
So far, so good!

Surgery Day 12-7-2016 Update #2

They just took my heart away.  It's so hard letting them carry your child off.
Projected time is 4 hours give or take. They'll call us with an update ever hour.
Dr. P is wonderful, he has watched our little girl grow from a newborn and treats her like his own little princess, I'm sure he'll take very good care of her.
They'll go into the right side if the heart first and hope the pathway(s) is there, if not they'll check the left, which is more difficult but doable.  He's hoping to freeze the pathway(s) but burning is also possible.  In about an hour they will be all prepped and done with the first step, an EP study that will hopefully show them where they need to be, then they should give us an update letting us know what they have found before they begin.
We're feeling your love and prayers, thank you :).



Surgery Day 12-7-2016 Update #1

Surgery is scheduled for 7:30am.  We were instructed to be here by 5:45am...not nice.  It's just over an hour drive so we had to get up at 4:00am.
Kimber woke up happy and excited.
It is now 6:15 and we're all registered, kimber and daddy are having a blast on Snap Chat, she is quite slap happy and full of energy.
We're being admitted right now.