We are extremely excited to announce that we have KS Buttons for sale – all proceeds will be donated to AXYS – An organization whose mission is to help individuals with one or more extra X or Y chromosomes and their families lead a fuller and more productive life. AXYS has also been an incredible help to our family personally and has ALWAYS been great support of our journey and my blog.
A little bit about how this all came about:
My husband and I are huge disney fans and have recently created a Social Club back in December. One of the main perks of joining such an amazing culture is the collection of pins and buttons and the amazing support everyone has for each other. We have decided to spread positive awareness by selling these buttons! Already we have had an overwhelming amount of orders from the disney community. It has seriously been awesome!
1 1/2″ Round
$1.50 (includes shipping)
All proceeds donated to AXYS
Please email me with your order at: email@example.com
As of this moment we are unable to ship overseas – BUT are looking for options to be able to do so! If you are overseas and would like to purchase – please email me to be put on “back order”.
Thank you all for your support!!
I am really excited to write this post, because we have hit an incredible amount of milestones the last 6 months or so!
A couple months ago, we had sought out an Early Intervention Service to get an evaluation done on Cheekies. For those of you out of the US or those who may not know what EIS is, the early intervention services help diagnose learning/development delays, autism, etc and provide therapy. Everything had been looking good for cheeks before the initial evaluation, but the services were free to us so we figured why not?
Our evaluation came back great, and there is no sign of autism or severe delay. We accepted the offer of speech therapy as well as occupational therapy because there were a couple delays in his speech (nothing crazy at all) and we are seeing slight issue with sensory in eating, sleeping, and excitement. Because of his diagnosis with KS, these services are covered by the state of Nevada and decided to take advantage of the opportunity.
(look how happy he looks here lol)
When we initially went in for the evaluation – we sensed that cheeks was a bit delayed with his words. He was saying a pretty good amount, but only on his time. He also wasn’t really putting two word sentences together. By the time we had our first speech therapy appointment, he has already progressed so much. Our therapist sees that once he goes over two words, he starts to mumble everything together. To me, I think his brain is still learning to think as fast as he talks. We have been working with him to express his words a lot more, and his therapist has been impressed with the amount of attention we have been giving him and his speech. In the past couple of months, he has progressed immensely and is starting to really say sentences and appropriately combining the words and the feeling. It has been amazing to see the progression.
Before we started with his therapist, we had taught Cheeks a couple sign language words to help him express his wants. After further discussion with the therapist, and especially after hearing and researching more information about the tip of the tongue phenomenon we have decided to really encourage more signs and Cheeks is really starting to progress in that as well! Super exciting and extremely proud of him 😀
(Helping mom cook pancakes)
With any two year old, eating is a struggle, a chore, and a frustration. I believe that a lot of what Cheeks is going through here is normal for his age. The problems we WERE facing – were that he didn’t want to eat anything really. We struggled to get him to eat anything but cereal bars. After really eliminating the bottle (yes that took longer than I wanted and he is still not completely weaned), we saw a big difference in his food intake, however we are still struggling to get him to eat more of a variety. We saw a nutritionist and she didn’t think that we had anything to worry about, so thats good!
I began to notice that we eats the most at lunch time at school, so I have been loading him up with everything in his lunch. As much food as I can get him to eat. Adding extra peanut butter to his sandwiches to get some more fat and protein in him, and really just making sure there is a good selection of nutrients of him.
We tried to get him to drink some meal replacement type protein packet things, but he wants digging the vanilla flavor. My worry right now is that he may not be getting enough protein. BUT, baby steps is all we can do. Our OT suggested that we don’t put a lot on his plate, and for dinner instead of putting everything on at once, bringing out each at a time. So we are trying a bunch of different stuff. One day he will just eat all 3 meals without a problem 😀
I think this is one of our bigger issues right now is Cheekies sleeping at night. We go through bouts of him waking up in the middle of the night screaming and then wanting to go downstairs to sleep on the couch.. and of course – mom has to sleep there too ha.
At first – and I’m still not taking it out of question, I thought that he was having night terrors. Our OT suggested limiting the nighttime TV and substituting with something else to see if that works. So we have a couple options there. I am also kind of noticing a pattern with his eating and his sleep. The last couple of nights he has woken up at about midnight/1am and I have noticed it was on a day where he didn’t eat much dinner. So I’m going to track that down and see what we can do. He may be waking up hungry? I don’t know. Lots of tracking when it comes to his sleeping issues.
Huge progress at daycare and at home with his pretend play. I have been waiting for this moment for a long time for personal satisfaction and I love that it has finally arrived! Cheeks LOVES to play with dinosaurs, cars, monsters (his personal fav), and really tries to bring you into his little play world. I love it!
Overall guys and gals, we couldn’t be happier with the way everything has been going with his development. I truly believe that love and support of the parents is what truly helps development happen and progress in kids. Get ahead of anything that may pop up, and continue to grow with your child 😀
And even after some of the negative that we have experienced with all of this the last year, I couldn’t be prouder of my son for all his milestones, and couldn’t be more prouder of B and I as parents.
I cannot believe we are hitting the 18 month mark ((actually 19 months this month))! It feels like just yesterday I was finding out about my pregnancy.
We had a fantastic check up Monday! Dr. Says he looks perfect clocking in at 22.6 lbs and 32.5″ 😀 Yes, Cheeks is getting long!
As far as his development goes, I honestly could not be any happier!
I cannot stop this kid from babbling! Pretty soon he is going to be saying sentences and its going to freak me out!
He is so smart.. i know parents say this all the time, but he really is! He knows which are my shoes and which are B’s and always sorts them and sets our shoes by us. It’s a trip!
Mr. Cheeks is obsessed with WWE wresting! It’s adorable and hilarious at the same time! He wrestles with anything he can! Toilet paper, pillows, the couch… US! Its adorable!
He is just enjoying life at the moment.. being a little boy!
We have not yet taking Cheeks to the specialist out of state. We are still trying to figure out what our new insurance is going to cover and honestly, it’s not a pressing issue for us right now. As a traveling mom its hard to find the right time to take him and honestly, there is nothing serious going on right now to make it a complete #1 priority. Not to say it isn’t important to us, because it is obviously, but we are enjoying the path we are given at the moment. We will keep you all updated as time goes.
Thats about it guys and gals! Thanks for reading!
Let’s go back to the day Cheeks met shower…
It was an ordinary afternoon.. And I was giving cheeks his bath. He was having a grand ol time! Playing, splashing, and putting his hands in the stream of the running faucet. To make the long story short, he found the shower release and well…. Showered himself silly… Scaring the ever loving Jesus out of him. Since then…. He would refuse a bath for the next 4 months, Leaving B and I to give him as many cloth baths as possible… Until with agonizing pain, we force him to take a bath. The screams that would come from him tore my heart out of my body and left me in tears.
We tried different things to ease the pain. Switch to the sink, add more duckies, add bubbles (which did NOT help at all!), I got in with him… It was a nightmare… Nothing was working.
Today was a ginormous leap as Brandon and I knew we could not wait any longer to give him a bath. So we took some time to brainstorm a bit and trucked over to babies r us to find something to help.
We decided on two bath toys, which Cheeks instantly became attached to. A swimming turtle, and a starfish water fountain. He held them through our adventure into Michael’s, and he knew that he had two toys when he got home.
When it came time for the bath, he patiently waited as we opened them up, explaining to him these were his bath toys, and that he would use them only in the bath. I had my swim suit on and the bath drawn and full of toys when we got up there. He knew what was happening and instantly started to become anxious and hesitant. I got into the bath and started playing with the water fountain starfish with hopes he would find interest. Nope… However he really wanted to play with the turtle… So Brandon hoisted him in with me where he started to cry as expected… But a different cry this time… Not as frightened. Brandon and I started to make our tones upbeat and excited while playing with his new toys.. Making him feel that it was extremely exciting… We slowly started to see him calm down… And after about 10 minutes of solid fake fun… He was settled and playing with his toys.. He sat on my lap, making sure I was in touching distance, and FINALLY allowed me to wash his body and hair in peace.
After he was all clean, we let him play, still sitting in my lap and in the water, until he decided he wanted to come out.. Praising him on how brave he was being. Heck we even refilled the hot water! He spent about 20 min playing :))
So after all this time… We had our first peaceful bath in about 4 months. Small steps and patience for this little guy.. But for now, I am a very happy mamma!
As a first time parent, I have moments where I have severe anxiety.. that twitch in your eye..that “Oh god no!”.. I have taken the time to list out my top 10 parent anxieties for your enjoyment ((in no particular order)).
1. Spaghetti Night: I think that any parent with a toddler will know exactly what I am talking about. We are a family of spaghetti lovers and have pasta at least once a week. We usually take the time for “prep time” before giving Cheeks his dinner. this includes a fully naked body, a bib, and our dog to clean up the thrown messes. 😀
2. Realizing you have forgotten the diaper bag: I have done this more times than I can count and literally get the biggest anxiety attack because of it. While driving all I can think is that he is going to have a giant blow out and my car is going to be covered in poop because I FORGOT THE DIAPER BAG. haha of course that’s a bit dramatic, but you moms know the type of shit that goes on in our brains sometimes ha
3. The calm before the “no nap” storm: Cheeks has really only never taken a nap once… and for those couple hours.. I just thought he was going to turn into this baby hulk. I felt like I was walking on eggshells the whole time… just waiting…..
4. Zero sound & zero smell poops: Maybe it’s just me.. but these freak me out… because you really just don’t know what you’re going to be dealing with..
5. Silence: No words needed. We all know silence is bad.
6. The sound of drawers opening: Cheeks it as a stage right now where he is finally tall enough to open all the drawers. We have all lower cabinets locked up, but now its time to venture upwards.. when your son runs into the living room with a giant knife in his hands for the first time… your heart flutters a bit. CURSE those curious assholes! *shaking my fist at them*.
7. “Hot dog! Hot dog! Hot diggity dog!!”: Remember that eye twitch I was talking about?…. ya… this.
8. When you are driving and look in the rearview mirror and your child looks like they cannot breath and are suffocating, but they are actually just pooping: This has freaked B and I out a couple times. Cheeks legitimately looks like he is dying in his carseat when he poops.
9. Parties: I always get really anxious when I am going to a birthday party or a gathering with a bunch of other parents. I honestly don’t care what other people think of my parenting style, but sometimes I cannot help but judge my own parenting by watching others and their styles. I also don’t know how to handle other children being inconsiderate.. and honestly my biggest anxiety is just trying not to lose my shit on other peoples kids.
10. Walking out of the stroller: I think right now this is my biggest anxiety. We have been slowly allowing Cheeks to walk outside of his stroller while we run errands.. but a couple of times he has thrown fits because he just wants to run free. It’s hard, and I know that the more we do it, the better he will get.. but yikes.. fits. *shivers*
So there you have it folks! My top ten parent anxieties!
Comment below YOUR personal parent anxieties!
I have been the topic of conversation for many people these last few months. Some good, some bad, and some that I feel really indifferent about.
I recently listened to a friend’s podcast that talked about “sharenting.” This is the term used to describe the way social media is used by parents and their children… basically it’s the culture of over sharing. This was a really great topic of conversation that really opened my eyes to a few things that I may be doing on my own social media site. However, as I continued to listen, I was then brought up anonymously (it was VERY apparent they were talking about me). I was brought up because I openly write and talk about my sons Klinefelter’s Syndrome. They had a few choice words to say about me and that what I was doing is detrimental to my son.. I was called ignorant and selfish for being so public… because of ONE topic they decided to mention about the syndrome… and this my friends.. is exactly why I write and talk publicly about Klinefelter’s Syndrome… education.
The problem that I have with being brought up in this podcast was not that I was talked negatively about.. I’m a grown woman and respect opinions from other people. Some of the points that were commented about “sharenting” made sense. Ya, I might be over sharing.. doesn’t mean this blog will be up forever…
What upset me is that they are completely uneducated in Klinefelter’s Syndrome. Why? Because google doesn’t give them the appropriate information.. as MANY of us mothers have found.
So of course their main topic of discussion was that because I openly talk about his syndrome (which I wish they would have said instead of keeping it quiet), the world may find out about one of the POSSIBLE symptoms of POSSIBLY having a smaller penis/testicles. And that by saying “Klinefelter’s Syndrome” to the world, they will alllll know about “his biz.” Big fucking deal. I don’t want to even get into an argument back about how we should change the way society thinks about penises.. that’s for a different day.
Anyways – Here are my thoughts about this whole thing.
Why weren’t the development issues discussed? Had they had the appropriate information, they would have found that the penis size is actually the LEAST of any parents concerns. Had they gone onto the parent support groups, they would have found that a large percentage of boys with KS have autism, learning delays, and emotional delays…
In my blog, I commonly write about my son’s development progress.
Why weren’t muscle deficiency and height issues discussed? Many boys and men struggle with muscle strength and development creating difficulty with sports or physical activities. Height is also a symptom of Klinefelter’s and can also cause difficulty. Combine height with poor muscle development, and I can’t imagine that could be fun.. and some of these kids grow so fast! I have seen a couple boys be around 6 foot before they can even think of hitting puberty!
Why weren’t the abortion rates discussed? I got an email today from a very nice woman who was scared out of her mind after reading posts on BabyCenter. I know exactly what she was talking about, because I was her at one point, searching for information and left to find many woman talking about terminating the pregnancy after prenatal diagnosis. I don’t want to discuss this too much, but it is definitely something to point out. Because of the lack of information it leaves mothers scared to death!
Why wasn’t the fact that the majority of men and boys diagnosed are overseas? I actually find this extremely interesting and should be brought up. In all the support groups the percentage of overseas diagnosis is blatantly higher than in the US. Why is this? Could it be because getting a chromosome test after birth is upwards of $1000+ in the US?
And most important of all….Why wasn’t the fact that while this is a very COMMON syndrome, there are little to no Dr.’s that can provide information? Why is it that I have to travel to one of 3 states in the US who specialize in this diagnosis or have a chromosome section in their hospital? Why do I have to go to a geneticist to get even the littlest of answers and next steps? Why is it that I have to rely on google for information.. to only be given outdated and incorrect information (minus a few websites)? Why is it that I have to rely on FACEBOOK (of all things) to get some type of hope? Why do women have to come to MY BLOG, to get some type of hope?
I get emails from mothers from all over the world thanking me for my blog.. and quite honestly… I DON’T POST MUCH! Nor do I post real significant information! I mean seriously… while it’s very flattering and amazing… I think it is sad at the same time. Parents should have easy access to the right information.
So am I over sharing? You bet your ass I am! And I will continue to do so until things are changed. Am I speaking for my son without giving him the opportunity to do so for himself? Yes, and I will take those comments into consideration when he is older… but for now.. I’m not ashamed of speaking about it.
Here is the bottom line. I will not hide the fact that my son has KS. Ever. I refuse to hide something that is HIM. He cannot control the fact that he was born with an extra chromosome. Why would l hide that? Why would I teach him to be ashamed of something that he cannot change? I think that would be more detrimental to him than taking away his choice of being open about it. I will raise him to be confident in himself, but also understand the issues America has with people who are different. I think it’s time we change the way our society thinks! That’s my opinion.
We are very fortunate to have found out so young. I’m thankful I can help him become a strong and confident person. I posted this story on the support groups sites; men and parents… I found that when parents find out when they are older, they hold reservations to tell anyone. I don’t blame them in this society nor do I think its wrong. Many of the KS men supported being open about it and hold no reservations to speak publicly.. I have come into a small handful of men who think differently.
In conclusion.. I do NOT have Klinefelter’s Syndrome… I understand this 100%. BUT I am part of a large community of parents who have the challenge of raising a child with this syndrome… challenges of symptoms, lack of information, and the challenges of making the process a bit easier.
I know what you may be thinking, “ignore the syndrome?” I know it seems weird, but here me out.
When I first found out that my son has Klinefelters Syndrome, I went into mamma bear mode. I learned everything I could, I joined every group I could, I tracked everything I could; I was on a rampage to learn. This is great, don’t get me wrong. You absolutely should gain all the knowledge you can.. but you cannot obsess over it.
I found myself with high anxiety with so many nights of little sleep just stressing on what could happen. That’s the beauty of syndromes is that you have no idea what could happen and what symptoms your little one will or wont start developing.
Here is where IGNORING the syndrome comes to play.
Enjoy your child ladies and gentleman. Stop obsessing. Get the knowledge you need to understand, see the Dr.s you need to treat properly, but all together ignore the syndrome.
I cannot tell you how much easier it is to handle everything when you just enjoy your son. You will not be able to go back in time and relive these wonderful years… so why waste them now by obsessing all the time about what could happen?
My best friend just posted a story about her daughter. She has spent much of her very early years with severe OCD tendencies. My friend would worry herself to death trying to “fix her”. That being said, it wasn’t until she stopped worrying and started to just accept that her daughter was who she was that they were truly able to live normally.. and most importantly.. happy.
Ignore the syndrome… enjoy your child. It’s the best advise I can give at this moment.