Damn You Trisomy

I've been mad lately. Not at anyone person or specialist but at Trisomy in general. There is so little known about Trisomy and it's so frustrating. Every new diagnosis that my son gets I wonder if it has to do with Trisomy or something seperate that if he was born without Trisomy he would still have. This has been a very rough past couple of months.

Kaleb has been diagnosed with moderate hearing loss, some type of blood disorder, is very delayed, his stomach is not working properly, his feet are a whole 'nother issue, anemia, soft tissue inflammation, fluid behind his ears, and I'm sure I'm leaving some things out...all in the past month or so.

My frustration has been growing day by day with news that there are still no answers. The specialists are completely stumped. How am I supposed to help my baby if we are all just guessing?

I am normally very happy and don't let these things bother me. I haven't really cried or stressed over health and developmental issues that Kaleb has but as he gets older it's hard for me not to. I know there are parents out there are are dealing with even more than we are and I feel for them. I am so lucky to have Kaleb in my life...I am truly blessed. But dammit....I hate you Trisomy. There are mother's out there that don't know what NILMDTS is (Now I Lay Me Down to Sleep), or what congenital heart defects are, or stenosis (I swear all Trisomy parents know about stenosis...stenosis of everything!)...I'm not one of those mother's. Unfortunately I know about all of those things and a billion medical terms and medications and therapies. However, those same mother's also do not know about the special fingers and toes our Trisomy babies have (and oooo do I love those special piggies!), or know about that special one crease in our babie's hands, and they also don't get to same excitement over a child doing something that seems to be small...like opening their hands, putting pressure on a leg...and lets not even talk about the bigger milestones like walking and crawling. I bet I'll fall out of my chair when those happen. I guess it's a love-hate relationship that I have with Trisomy.

I just want answers. If there is something wrong with my son, I want to know so it can be fixed or treated or whatever needs to be done. I feel like there is something really going on that is causing the anemia, his bone marrow to not work properly, and the soft tissue inflammation...I feel they are all linked and no one has a clue. What if it's getting worse or doing more harm than we know and it isn't being treated? Ugh.

Sorry for my soap box...I just needed to write and get some things off of my mind.

Wow...I just "googled" Trisomy 9 to find a page I had been looking for and my blog came up on the first search page. Wow. Hopefully my blog can help educate pregnant moms or new moms in the future about Trisomy 9. When I was pregnant there was not much information on the internet and finding someone's personal blog would have been amazing.

Kaleb - 11 Months Old

My precious sweet baby is about to be 11 months old in 30 minutes. Wow. Time sure does fly. I haven't been good about updating his monthly birthdays, bad mommy! The older Kaleb gets the more his delays become apparent. It's hard on me. Especially seeing other people post about what their 11 month old or 10 month old is doing that Kaleb can't do...I know it shouldn't bother me but it does. BUT...when Kaleb does something new or reaches a new milestone, it makes it so much more special. During the past 11 months (and even more, some during my pregnancy) I have gotten to know such amazing people and children. I have gained a new family, I call them my trisomy family. They know the struggles and they understand the ups and the downs, but even more...they understand how having a child with trisomy makes life amazing in so many ways. I'm so thankful for these people. No more sappiness for today...I've cried enough recently so here's a quick glance at my sweet cheeks.

*he loves to blow rasperries

*he loves his daddy more than anyone else and will laugh just by seeing his daddy

*he still has no teeth but has been chewing on anything and everything he can get in his mouth

*he says dadadada and does some babbling

*he started bearing weight on his legs this week

*he absolutely HATES to be put down when my hubby or I are anywhere around

*he hates aquatic therapy

*he loves food, any food. 

*he can gum some puffs now

*he loves to be thrown up in the air

*he sleeps about 12 hours a night {thank god}

*he is still drinking alimentum formula

*he can pick up things

*his hands can completely open, and now over extends them a lot

*he is double jointed in almost every joint {the moves he has are sometimes creepy to look at}

*he spent a week in the hospital recently and I'm pretty sure it was for the extra attention

*he LOVES his big brother. Nolan can hit him with a toy and he will laugh. 

*he hates his exersaucer and bouncer seats, mostly because that means we aren't holding him

*he recently got his AFO's (ankle foot orthotics) which I believe we will use once he gets close to walking

*he is not crawling but can roll and turn himself so much that he can get across a room

*he is finally sometimes allowing other people to hold him when we are nearby. although that is not always a sure thing, especially if we are in sight

*he is currently on antibitotics and has always been on reflux medication, which he loves to take! 

*he can somewhat sit up on his own and is bearing more weight in his hips lately

*he hates physical therapy

*he finally will sleep in the car, no more screaming during car rides

*he has the most infectious smile I have ever seen

*I love to snuggle up in his cheeks, sooo soft and cushion-y

*he loves to hold his legs straight out and pull them straight up to his mouth to suck on his toes {again...double  jointed}

*he absolutely positively loves Yo Gabba Gabba

I think I could go on and on about this amazing little boy and how amazing he has made my life. I'm so lucky that I'm able to now be a stay at home mom so that I can help him grow in every way possible. I have a great support system and even though this is difficult at times, I am so happy to say I am Kaleb's mommy.

I need to start planning his birthday party!

FITBF

Today after my 11 hour Black Friday Shopping trip I am filling in the blank with Lauren @ The Little Things we do. 

1.   Waking up at the break of dawn to go shopping is my idea of     a little wacky. i never was one to wake up super early to go shopping, but i do partake in black friday shopping a littler later (maybe 9 or 10 am). We did try to go this morning at midnight however that didn't work out too well and we only lasted about 30 minutes before my friend got sick   .

2.   If I were to go shopping today I would be on the hunt for   well i did go shopping today and i was on the hunt for anything really. i didnt have a list necessarily but i knew a couple things i wanted to get for the hubby and then mostly toys for the kiddos      .

3.  The best thing I ate yesterday was    i really dont eat much on Thanksgiving, yeah i know I'm weird. The most I ate was probably of my grandma's mashed taters :)    .

4. Something I've been learning lately is    that i am a total shopper deal grabbing mommy. i love me some good deals and may get addicted to "stockpiling"   .

5.  I cannot start my day without    caffeine. normally in the form of a frappe or a coke zero...and sometimes even coffee.

6.  My nighttime attire consists of    t-shirt and pj pants

7.  I am looking forward to    being a stay at home mommy. i can't wait to spend so much extra time with my kids and not have to worry about my very demanding and stressful job as an investigator. i begin my new job as a SAHM on monday!!

Oh How Pinteresting

{i am thankful}


{thanksgiving is actually the holiday that I eat the least but I know this is true for most}




miss you dad...




{hilarious episode}


{always need some texas love}

Bath Cleaning

This year everyone is doing their "thankful for..." lists. Well I've decided I'm going to tell you what Nolan is thankful for instead of myself. 

He is absolutely, positively thankful for

cleaning supplies. 

He started getting into the cleaning gig before he could even crawl, he would take his wipes and wipe down our cabinets or anything that was his height. We were sure he would out grow it. Instead, he has grown more into it. He is now tall enough to actually plug in our vacuum and vacuum our carpet....on a daily basis. 

He begs for my cleaning supplies which I have to hide in my laundry room from him. We even made him his own spray bottle (with water) and he gets one of my cleaning towels and cleans just about everything. At first I enjoyed it, hey...one more person cleaning in the house sounds great. Now it's basically the only thing that will set him off into temper tantrum mode. If you tell Nolan he cannot clean at any given time, you better watch out. He will throw things, pull your hair, hit you, punch you, pinch you, bite you...and the worst part is this is actually true. 

"I anna clean. Clean mommy clean. Clleeeaaaannnnnn!

CLEAN!!!!"

He absolutely loves bath time. Why? )Especially when he hates getting water in his face and being cleaned) Well there is water and wash cloths involved, connect the dots. He is so excited for bath time because he can finally clean. And when we get his brother out of the bath because obviously he doesn't need to sit in the bath tub for the 45 minutes of cleaning frenzy that takes place, Nolan cleans his chair. 

Since I finally found my camera (that will HAVE to be another blog...men are hilarious btw) I can now post daily pictures, hooray! So here are tonight's pictures of Nolan's bath time cleaning! 

{must clean Kaleb's seat}

{can't miss the sides of the bath tub}

{inspection, must be perfect}

{gotta wash the cup used to wash the seat}

{scrub a dub}

{squeeze out the excess}

{so happy!}

{handsome}

{hard work}

{ta-da}

The End

Today was my first day of my last week at work. I've decided to be a stay at home mommy to help care for Kaleb's special needs and spend more quality time with my kiddos while they are young. This has been a very hard decision. I love my job. I've always wanted to be an investigator and I have met amazing people in the process. I have seen amazing things and also terrible things that people can do to each other. I have seen my clients on television. I have felt joy, sadness, anger, and compassion for all types of people. I fight for children everyday and now it's my time to focus that energy on my little men. Each time I do something at work I think, "this is the last time I will.....".

I know people must think I'm crazy but even though my job can make me absolutely bonkers, I love it and I'm proud doing what I do on a daily basis. I've never been a stay at home type of mommy. I'm no Suzy Homemaker and have always been terrible with laundry, cooking, cleaning, picking up, blah blah blah. BUT, I have made an effort to change my ways lately, I have been cooking a lot more and I can't wait to be a SAHM. Think of the fun we can have!

The kids can also go to daycare as many days a week as we want, probably 1-2 days for the most part. They have amazing teachers that we will miss and amazing friends. Nolan constantly talks about his best friend Will, then he also has his lower level totem pole buddies, Juju and Lolo. I love that little boy.

Sincerely, 
Erin...S A H M 
:)

Fill in the Blank Friday

Fill in the blank Friday

1. A nervous habit I have is     twisting my engagement and wedding rings around. I never really noticed this until my first time on the witness stand for one of my cases. I also do it during job interviews, when I'm on the phone, and other obviously anxiety ridden moments.

2. Something that makes me sad is   seeing the Orange County Sherrif's Office Chaplain car parked in front of the children's hospital that we are at. It brought me chills when I saw it. I prayed instantly for all of the families of children in this hospital, especially the family that the chaplain was there visiting.

3. Today I am thankful for my marriage. We are silly and bicker over the smallest things but we have a great relationship. I don't worry that he is going to leave me and I find comfort in the idea of growing old with him. We have already been through so much I feel like we can get through anything. We both realize that if we want to make it through a particularly difficult situation then we know it's pointless to argue. I love my hubby.

4. My favorite room in my house is    front room...aka man cave. Obviously it shouldn't be my favorite but we just moved in not too long ago and we haven't really had time to decorate like we want. That is the only room we have decorated and made it the way we want (minus putting some things on the walls in there). But it's nice and cozy and comfy.

5. I can't stand    people that don't have children and can't understand why you make certain decisions when it comes to your kids. Those people will see that they would have made the same decisions during those difficult times when they have children.

6. If I had an extra $100 to spend on whatever I wanted today I would    really probably just put it in my purse and slowly use it over time.

7. The last person I hung out with was    Tiffany came over again tonight to spend time with me and Kaleb while we are being held hostage. :) We got Jason's Deli and watched the crazy 20/20 special on polygamy. Wow, just...wow.