Saturday, July 7, 2012

A Long Catch Up Post!

We are having a great summer...we've been VERY busy!

Zoya is taking a break from school for the summer :) We started her for a couple weeks in the summer program (just 2 mornings a week) but then decided she needs a break! So I've been trying to find lots of ways to keep her busy, engaged, having fun, AND learning. She enjoys sensory activities such as bean and ice play, water table fun, swimming in her small pool, and carrying her little radio EVERYWHERE with her. She is a big fan of Doc McStuffins on Disney lately. She is still loving horse back riding and this week we have her third session! We've started travelling for her PROMPT speech therapy sessions again every other week.  We hadn't seen the therapist since August (we took a break with all of Mila's needs and needed time to integrate as a new family). The therapist could not believe the progress!! This made me extremely happy! Sometimes you don't realize how much progress your child is making because you see them every single day! 

She just had her 4 year check up! She is weighing in at 32.5 pounds and 38.5 inches tall! That puts her in the 90th percentile for height and the 60th percentile for weight (on the Down Syndrome Charts)...so she is my string bean! I discovered that they did not order the correct views for her neck xray so back we go! I always request a copy of any reports from any tests for this reason! They said her neck xray was negative, and it WAS, but they didn't order the right views to actually check for AAI!  We also learned her right tube is already out...boo! It was only 3.5 months ago that she had them placed! Her last set lasted over a year. So we have some medical appointments in Zoya's future. 

She also had another horrid reaction to her vaccine. She has never responded well so I told them I'd only allow one at a time. Sure enough just before midnight she woke up with a high fever (at least no vomiting this time because I knew to pump her full of meds before bed). It was then followed by 3-4 awful days of a miserable Zoya who turns into a child I don't even recognize! I called the doctor to tell them to put it in her chart and talk to them about discontinuing vaccinations. They told me this was a normal reaction and I assured them it is not. Mila has had vaccines and we've gotten the typical slight fever and fussiness, but THIS is completely NOT normal! I can't even describe the monster Zoya becomes after a vaccine. If my children didn't have heart conditions and weren't at a higher risk for getting sick, I'd surely not vaccinate but that's a debate for a whole other place that'd I'd rather not open up here! 





Who knew all it took to get over her love/hate relationship with the carousel was riding a REAL horse!

Pure joy!


So proud of herself! High five!


A big train fan these days. She could watch this zoo train for hours! 

Learning to take care of Maple


Minnie gets a turn! 

Learning to lead Maple

"Taking him for a walk" as Zoya calls it!

"Look Dad, can I have one? Promise I'll take good care of it!"


Trying to get on the horse!


Putting the ring on his ear!

Nothing better than this!

Sisters playing in the bean box! 


Love how Mila is looking at Zoya here! 

Mila has been growing by leaps and bounds. In fact, I just pulled out Zoya's old 18 month clothes and they just about fit Mila! WOAH! Zoya was wearing 18 month clothing at over 2 years old!!! It is crazy to think just how much Mila has grown since coming home! She was never meant to be little...there's no "little" in her blood LOL. Mila has been working a lot on standing, sitting on a stool and getting on all fours to work on core strength, feeding goals (looks like she's not doing too bad in that department, right?). She has a consult for sure steps (SMO's/ankle stability braces) and they said while she could benefit from them now they want to wait a few months when her growth spurt is over (will it ever end???) so that she doesn't outgrow them in a few months. Insurance typically only covers one pair a year, so that's the plan! Just as her sister is outgrowing the need for them, she will be fitted for a pair! Good thing I saved all of Zoya's old shoes!

Mila just had her 15 month check up and weighed in at just over 22 pounds! She is 29.5 inches if I remember correctly. Her doctor thinks it's a good idea to have the sedated ABR hearing test and as long as we're doing that we are going to try to get an MRI done as well just to make sure her nystagmus is related to DS and not neurological in nature. Mila just went for her swallow study and airway follow up appointment. Unfortunately the swallow study showed that she aspirated on thin liquids one time, so we were not released. BUT she is showing lots of progress. The only time she aspirated on thins was when they pulled the straw cup away mid-suck and messed up her pattern that she has down so well! So the doctor was not very concerned and we will see him again in 6 months! 

Mila's little personality is really starting to show! She s a FUNNY FUNNY girl! She tries to make us laugh by making funny faces. She is also trying to get the hang of this whole "communication thing." She tries all her sounds and her few signs all at the same time when she wants to communicate something, it's pretty funny! She figures if she just throws it all out there maybe something will work to get her what she wants! She is still waking up between 5 and 5:45 most mornings despite our best efforts. She is very happy and very LOUD when she wakes up, just talking away in her crib! 





Mila sleeps in the strangest positions!

OUCH!! No worries, she doesn't stay in one position for longer than 30 seconds usually!
Tip for Baby Bean Play-give the baby a binky so they don't eat the beans ;)


This it the life!

I think she is thinking "wow when did I get such fat piggies?"

And from the POPSICLE FILES.....












My favorite!!!

Future Statue of Liberty?

It's gotta be good when you get the popsicle drool all the way to the neck creases!!!

Thursday, July 5, 2012

Ryan


Many of you have been asking for an update on sweet RYAN that I posted about there and HERE. Almost a month ago the doctors let his family know that they've done all they can do and that he had, at most, two months to live here on this earth. I got to snuggle sweet Ryan, AKA Superman, on Tuesday. My heart just melted. To say he is a special boy just doesn't even begin to do him justice. He is simply amazing. His strength and courage astounded me. Still, it's just not fair! He was having a rough day, and the past few days have been very difficult. They have decreased his feeds quite a bit and he has not had a wet diaper in 24 hours now. His body is slowly shutting down. Nobody knows, of course, how much time he has left but it is a matter of days from what they can tell. I cannot tell you the sadness I saw in his mama's eyes when we visited. This little boy is her life and she has to face the future without him. I can't even imagine being in her shoes, I just have no idea what she (and Ryan's Daddy) are feeling, but I know it must be excruciating.

They are truly making the best of their time with him. If you simply google "Ryan banana split party" you will see worldwide coverage of this sweet boy! He is simply amazing. His life is ending too soon, it's not fair, but it amazes me to see how his life has reminded hundreds of thousands of people to simply not take life for granted, to enjoy the small things....to slow down a bit and just be.

Here is one sweet article/video of his amazing story. 

Please keep him and his family in your thoughts during what is sure to be a very difficult upcoming time.

Happy 4th of July from 2 Little American Ladies!

Freedom means.....
I have many reasons to smile

 Freedom means....
I am happy enough to make funny faces!

Freedom means....
I can spend all day in the pool instead of a crib

Freedom means....
 I can explore, learn, and grow

Freedom means....
 I can laugh so hard my face looks all squishy

Freedom means
 I can eat enough to give myself a fat baby belly

Freedom means....
I can have tiny baby curls instead of a shaved head 

Freedom means
Knowing I'm loved! 


Happy 4th of July!