An alternative mom telling it like it is

Tag Archives: PMA

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Hey Everyone!!

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!

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Buttons are:
1 1/2″ Round
$1.50 (includes shipping)
All proceeds donated to AXYS

Please email me with your order at: roebling.k@gmail.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!!

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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.

12644764_10208714530964662_9223003356375886952_n.jpg(look how happy he looks here lol)

Speech: 
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 😀

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(Helping mom cook pancakes)

Eating:
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 😀

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Sleeping:
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.

Playing:
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.

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Hey KS moms reading this! I greatly appreciate you stopping by and keeping up with Mr. Cheeks process!

Not a lot of the symptoms have changed from the first post as far as attitude and what not. I have noticed that with the shots, it allows Cheeks to really take those milestones head on. What I mean by that is within about two weeks of his shot he was crawling instantly. There was really no down time to learn and practice.
His peepee had grown and we were very excited about that!

Other then that there was really nothing to updated as far as the shot is concerned.
I will however say that I am extremely glad we made the decision to get it for him. I can tell its helping his development immensely, not just his penis.

I do however worry about what is going to happen in the next 6 months (that’s when our next appointment and without shots). I feel the shots have really helped with his mental development and I would hate for him to take a step back. We will just have to monitor it.

I am still keeping a log on his milestones as well as any weird twitches and stimulatory rituals he has been doing. It’s really hard for me to keep a balance between watching for Autism and not tracking typical baby things. At this point I am tracking everything, and if he is never diagnosed with any form of ASD, then we will have this nice notebook of silly things he used to do to share when he is older. That is totally fine with me!

This post is kind of scattered everywhere, sorry haha
I have a couple more KS posts that I am going to write today so keep watch!

xo Kayla

 


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I think a fear in every mom’s mind is something to be “wrong” with their child. Regardless of the outcomes, that amount of love we feel for our child will never leave our hearts; if anything its enhanced.

I was struck with the fear chord a week and a half ago when I found out that my son has been diagnosed with Klinefelter Syndrome. KS is caused by the gain of genetic material – a whole X chromosome. Basically normal boys have a XY chromosome Aiden has a XXY.
Hearing my Dr. sadly say, “I’m so so sorry I have to give you this news… are you ok?” was an angry shock to me….. BITCH. NO IM NOT OK! I DON’T KNOW WHAT YOU’RE TALKING ABOUT! WHAT THE FUUUUUCK IS KLINEFELTER SYNDROME?! IS MY SON OK? WHY ARE YOU SO FUCKING SAD LOOKING RIGHT NOW LIKE YOU FEEL SORRY FOR ME?

So the Dr. gives me a one pager on KS….not exactly the best one she could have given me (I might actually put in a request for a more sensitive one).
Let’s run down the list of symptoms as per the one pager and Kayla’s thought process while reading:

  1. Tall in height (ok… cool Mr. Cheeks will be tall and handsome!)
  2. Smaller Testicles… (eh. That’s fine)
  3. Infertile (well that fucking blows… but it’s doable.. not the end of the world)
  4. **in all caps on the paper** MENTAL RETARDATION (……..ummmm..)
  5. Severe learning disabilities, social difficulties/withdrawal, intellectual disabilities, speech and language delay, neurodevelopmental disorders (……ummmm soooo what are you saying here….)

At this point I was just so in shock I didn’t have any questions for her. Instead I went to Google when I got home.
The one thing that pisses me off beyond belief is that there is hardly any websites that fully go into the real parts of KS. Websites only have the general info I stated above. The problem with this is that it’s so fucking vague! For instance, I know that Aiden does not suffer mental retardation, but as for the other disabilities listed, what exactly does that look like? What typically happens in this case? What do we normally see happen? Are we talking he is going to have trouble with math or are we talking he is not going to be able to comprehend the universe around him? These are things I need to know and Google is not giving me any fucking answers!

After I contemplated for a good 2 hours if I should write a very frustrated and mean letter to Google, I took to facebook, my home away from home and found some private groups of parents with boys who have KS. This was good… and bad. I learned a lot going onto those groups and realized why it is that really just don’t like people.. A. I can’t believe how negative people can be about things. B. I learned that many (and my many I mean the majority of the parents on this site) boys that have KS also have some form of autism.. normally not super severe. C. There was almost TOO much information about their lives and negative experiences… which started to overwhelm me to the point of stress related sickness. However, it did lead me to look on some autism websites – which actually had the BEST and most information about Klinefelter syndrome. The sites also made it not seem so scary, which was helpful.
Automatically my mind goes into a worried mamma bear freak out and I just panic.. What if he has autism? What do I need to do to help him? Blah blah blah you know the drill. The fear of unknown just kills me. Unknown information, unknown future, unknown feelings! And then with my previous postpartum anxiety crisis we wrote about early, I just want to explode.

To answer what is on everyone’s mind at this point.. is Aiden autistic? I can’t tell you right now.. I don’t know. We will have to wait and see. I would like to say right away absolutely not, but there is a chance and the probability is higher because of his diagnosis, but we cannot get him tested until he is about 1… which is all honestly, I will probably get done regardless if he is showing signs or not.

Is he showing signs? He’s a baby – he excels in this and then doesn’t in that.. babies do weird shit at this age. I will admit there are some things he does that are questionable, but I would have never questioned them at this point had I not found all of this out.. I can’t keep looking for things that aren’t there. What I can, and will do is keep the signs in the back of my head. If he ends up showing autistic signs, I want to get it handled ASAP. Sooner the better for treatment.

All in all.. it has been a really hard week and a half for me.. My control issues and a “fix-it” mentality as my dad says is getting in my way. I think the thing that kills me the most is that I just don’t know and I don’t know how to prepare. Which is like every child I know.. but it’s harder when you know the probability with your child. The few people who I have told about this just don’t understand the feelings that I have… a common response is that ‘any child can have autism’…and I get it, but when you see that the majority of boys with KS have autism…it’s hard to shut that off and ignore. It’s really hard to explain, but I’m sure some of you know what I am talking about. SO – after last Tuesdays almost nervous breakdown from stress illness, I have decided to shut off my brain and let it go for now. I have to be strong for not only my son, but for Brandon. We cannot live in fear, dwell on what could happen, and definitely not try and make it into something that it isn’t before we know for sure. We have to enjoy these baby years because they are not going to last that much longer! I have to keep my PMA up!

To wrap this up first I would like to apologize with how all over the place this post is.
I will start a small segment with him called ‘XXY Super Cheeks’ with updates on his testosterone therapy, development, and everything else for my readers who are dealing with this same thing. This is going to be an interesting ride and I hope that you all send positive prayers and vibes our way.

http://www.openingautism.com/Genetics/ConditionDetails/26
Genetics.org
^^best sites I found for explaining Klinefelters^^
PS – He was tested for this because of being born with a smaller then normal penis. They were testing his testosterone levels, estrogen levels, t4, and sex chromosome. 😀

 

 

If anyone reading this has any hands on experience with Klinesfelter Syndrome I would love love to hear from you and get feedback and hear your stories and tips! You can either message below or message me at mammabluette@gmail.com.


I travel for work a couple of times out of the year. So far since Mr. Cheeks has been born, I have traveled about 4 or 5 times, this last time being the hardest.
I would have thought for sure that when he was smaller I would have been more upset while gone. But it seems as though as he grows older with more personality, it really makes traveling much more difficult.
I just recently got back from a short 2 day music conference in LA. I found myself more then ever trying to keep my mind busy so I would stop thinking about going home to be with my family. I missed playing and snuggling with my son…it was kind of sad. Sometimes I worry that I am going to miss something.. what if he magically starts crawling while I am away!? It is times like this where I truly wish I was A. Rich as shit, and B. capable of being a stay at home mom.


Amber is a natural analgesic and when worn on the skin, it releases healing oils that helps babies stay calm and more relaxed thoughout teething. They are a great natural remedy that can eliminate the need for over the counter drugs. Which is great for us “granola moms” who are paranoid about what we put into our child’s body.

I had heard from many girlfriends who swore by the necklaces and so the instant Mr. Cheeks showed signs of teething I bought one right away! He had been fussy for 2 days and literally within an hour of putting the necklace on him he stopped fussing and went back to being his happy normal self. Coincidence? Maybe. But we haven’t taken it off of him since and we have had no issues……. Aside from the pools of drool the leaks out of his mouth.

Basically I highly recommend it to anyone! We haven’t had to give him any type of Tylenol at all and he doesn’t even know he’s wearing it.

ALSO! Bonus! They make adult size necklaces and I plan on trying one out for my migraines to see how it works.

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After a long night of teething fussiness, we are finally awake this morning. The air is crisp, the sun is out, the cats are finally happy with food, and I have my coffee…. My sweet sweet coffee………..
Anyways, Brandon has the feeding shift this morning and everything seems to be going fairly smooth. He finishes, burps him, and starts playing with the now happy, Mr. Cheeks. So where does this story turn do you ask? With one kiss. Mr. Cheeks gives his I want kisses face and so Brandon brings him in to give him kisses…. And that’s when Mr. Cheeks changed…. In a blink of an eye… He had spit up all over Brandon’s face! Soooooo close to hitting the ol mouth. This isn’t when he becomes the asshole – it’s when he turns around to look at me with the most devilish- problem child look and giggles! He knew what he was doing….. He knew…..



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