Still no sleep but the kids are alright
Can’t believe we have an 8 year old! Holy cow! Where did time go? Lizzie turned 8 and wanted to spend her birthday with her cousins in Victoria.
Lizzie is doing great. Loving the third grade. She will start a program soon called Girls on The Run. Both her and Cooper are still taking swim lessons.
August has been a bit of a whirlwind for us. After a few days on the medication the neurologist put Cooper on, we noticed a complete difference in his behavior. He did start sleeping better but that slowly stopped as well and he was visiting us at 3 am.
Cooper had his 4 year check-up. His doctor questioned why he was on the medication and we told her what we knew: they saw spikes on his EEG, his EEG was abnormal and it was to prevent seizures…that he wasn’t having. We all agreed he didn’t need to be on this medication. (He was also one of several children she had seen with the same folder from the same neurology facility with the same diagnosis)
I called the neurologist to ask about another medication and to see why he was on this one. I also mentioned after talking to his pediatrician, we have concerns. The neurologist tried to explain but as soon as I mentioned his pediatrician, the neurologist got very defensive and said that she went to school for neurology and a lot longer than she did. That upset me - she didn’t seem to have my kid’s best interest and more of a contest of who knows more.
After talking to his therapists and hearing from the elementary schools psychologist apparently he is one of MANY kids that was told have EEG, MRI, medication, genetic testing and hours and hours of ABA therapy. This did not sit well with me.
We decided to start weaning him off the medication. We still have an MRI scheduled and not sure if we should cancel it or not. He will NOT being doing any ABA therapy. We also contacted another neurologist for a second opinion.
Cooper also started PPCD (Preschool Programs for Children with Disabilities) at a nearby elementary school. (The school that Lizzie goes to doesn’t have the program and they feed into the near by school.) He goes from 11:55 to 2:55 to big school and loves ever minute of it. He has the best teachers and we are so glad he is in the program. We are started to see differences in his behavior already.
He will be also starting his MDO Preschool (3 year old class) next week on T, TH, F from 9:00 to 11:40. We feel that this is the best for him. He also is still doing private therapy on Mondays.
So as of now Cooper loves school, is back to not sleeping through the night (even with the help of melatonin) and is thriving. We still don’t know what to do about the MRI. Sometimes we still don’t know what to do when it comes to Cooper. And the guilt of having to put Lizzie second at times is always there. But we do our best and make sure they know we love them more than anything.
Let's start at the beginning
It’s a very good place to start.
Dustin and I started dating at the end of 2003. We both worked for a newspaper. Eventually we went to work for a paper in Katy and moved. We eventually got engaged and married in 2010.
We had Lizzie on August 23, 2011. She had a milk protein allergy. But other than that a pretty good baby.
We had a miscarriage at 8 weeks, followed by a chemical pregnancy and then lost another pregnancy, Luke, at 16 weeks.
After being told that we shouldn’t have anymore children by a genetic counselor, we found out in October of 2014, that we were expecting.
I was brought in for testing, blood work and monitoring because of pregnancy history and because I was 37. We were going to have a boy and everything was going great.
Cooper wasn’t a rough delivery. But we did have problems pulling him out. But he came out.
Cooper ended up with a milk protein allergy, eczema and reflux. But he still hit every single milestone. He was climbing before he could walk!
When he was 18 months, he vomited for 54 days straight. After numerous testing, Cooper was found to have severe silent reflux. During this time he stopped taking and his speech became delayed.
Over the next few years and struggling in his 2 year old daycare class, we had him tested for speech and occupational therapy. There we found that Cooper is delayed in speech and has pervasive developmental disorder and is a sensory seeker.
He ended up having an endoscopy to check his reflux and was found to have ulcers and some reflux. He also had tubes put in his ears in November of 2018. (One has already fallen out – drats!)
We had him genetically tested by a neurologist and it was found he didn’t have any issues. However, we have yet to do an EEG on him.
He was tested by the school system and was found to have speech issues and autistic.
So this is where we are today.
Parenting is not perfection
I wanted to share a few things that I might make you laugh, cringe, cry or think is she copying my life? I had a moment today where I thought, "wow, i'm totally crushing it this week." That quickly turned to, "Whatever, it doesn't matter. I have to survive, I'll do what it takes."
Cooper is eating cheddar veggie straws because he won't eat anything else and is on a new round of antibiotics after seeing an EN and has to eat with the new meds. Lizzie is currently home sick after I had to go get her from school, after what I thought (and really ya'll probably is) was her being overtired. But now she's throwing up. I just wanted to make a JuicePlus shake, have some coffee.
And I have a short fuse. I'm snapping and yelling. Why because things are perfect and I'm having to give one kid chips because he won't eat. And the other is treating me like a servant because she sick. And now I feel bad because I'm mad.
Here's the thing, where I'm feeling guilty and like a bad mom for the choices I making for my kids (junk for breakfast - not giving my kid the benefit of the doubt), it's okay. Because as parents, we got to do what works for us. We kill ourselves to be perfect - and for who? Not ourselves but for others to see.
I try to remember Galatians 1:10 (Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.)
My parent friends think about that today when you feel guilty about choices you made regarding your kiddos. Stop. It's okay to not have perfect kids. It's okay that your kids aren't like all your friends kids. It's okay for you not to get what you need done. It's okay to not be able to hold it together. We are all in this together. Trying to be perfect will only leave you feeing insane and empty.
Hugs, y'all!
To-go fun
When my daughter was maybe 2 or 3, I was sad because there wasn't anymore Saturday cartoons. The fun toys that I loved to play with and that sparked my imagination, are either buried in the past or carry a hefty price tag for being "retro."
We had a first generation iPad. And we found some apps. She really liked and responded to Sago Mini. The Sago Mini apps are smart, educational and importantly, fun. She loved the characters, the different adventures they would go on could keep her talking about them for hours.
She grew up and found KidsTube. Her two year old brother soon found Sago Mini. Just like his sister before him, he loved each character. And then Cooper found KidsTube.
There are so many, MANY problems with KidsTube. Mainly, the videos of kids (and adults) opening products that they want. Parents playing with toys with their kids and videoing it - allowing them to earn income on ad revenue. Plus, it's addicting. A simple app, would keep their attention for a 15 minutes at most. And the kids were willing to unplug from electronics. With KidsTube, asking my kids to put down the iPad is like watching an addict needing their next fix.
Trust me, my husband and I are quick to hand out phones and pads to quiet them at a restaurant. But when the meal comes, it's an all out battle for the phones and pads to be off while we eat.
So what does this have to do with SagoMini? Remember how I said Sago Mini is smart? SagoMini came out with a line of portable on the go toys. We first purchased Harvey and his rocket, on a whim just to see if they would play with it.
Holy cow! The kids took turns playing with Harvey and blasting off around a restaurant. Harvey has been on countless adventures during his road trips and normal outings with us. The Sago mini toys are so much fun and easy to take along. No more screaming about iPads or no wifi at restaurants. Just actual imagination and fun - made by them, not somebody on KidsTube.
When I saw that Amazon sold the other playsets, I thought well maybe. They aren't very cheap. I found them on sale, because the box was damaged. At that price, I decided to snatch them up.
It is now going on hour 2 as the kids sit together and play with the diner, house and of course, the rocket. What's even better, is they are playing with the characters that they see on their apps. The kind of characters that spread kindness, joy, learning and fun - something that seems to be lacking in our some of the cartoons today.
I can't wait to take them on our next trip - even if it's to the restaurant a mile away.