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) 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! 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!!!


  1. All I can think of is WOW! Both girls are doing amazing! Zoya and her love for all things Zebra. LOL Love that she is learning how to interact with the Mabel with brushing and leading, that is awesome.

    Ms. fussy pants and her popsicle had me cracking up. She sure has the "eating thing" down doesn't she. Girl knows what she likes!

  2. Thanks so much for sharing your pictures, they are so darn cute! I'm so glad that your girls are doing well. Like Zoya, my son has had terrible reactions to his baby shots. High fever, long bouts of crying, no sleeping, for days. None of my other 7 kids reacted this way. I've decided not to skip them because some of our kids don't have a great immune system and we are around a lot of kids who are not immunized, so I feel like we are at higher risk. But, we have started doing just one at a time and it made a big difference in the length of his reactions.
    Mila is such a doll, the way she sleeps is so funny! Have you thought about using hip-huggers at night? We use them with our little girl and it seems to improve her posture through the day, and she sleeps better now. I think she was waking herself up moving around so much.

    1. So good to hear we're not alone with that! Yah my feeling is the same, like I said, if my girls didn't have heart issues and low immune systems as it is, I'd not vaccinate, but they do. The doctor agreed to draw blood titers for some of the things that she has had one dose of and if she shows immune we don't have to do the others.

      We have the hip helpers, she actually grew out of the size we had so her PT is ordering some bigger sizes to try. Her problem is that she spits up after wearing them for 20 minutes...which probably means they were too tight around her belly...her proportions are so off that if we go with the bigger sizes they go down way too far on her legs! We're going to try a couple of other sizes and see if we can make them work, if not we might order a custom pair. Her measurements are very WONKY compared to the chart they give on the website!!! Short legs, huge belly!!! LOL Does your little girl have this problem of them not fitting right??? I would love to use them at night but won't do that unless she can wear them during the day for longer periods without getting uncomfortable :(

  3. I hope this doesn't come off as negative because I really don't intend it to be... but just in case you weren't aware, popsicles (ice cream and jello too) are considered a thin liquid. The reason I'm pointing that out is because a lot of people don't realize it and unfortunately, a lot of SLPs don't take the time to point it out.
    I'm not in any way trying to say that you shouldn't provide Mila with popsicles (or other thin liquids for that matter) as I obviously don't know the specifics of her dysphagia. I just wanted to make sure that it was a conscious decision to provide thin liquids and not a lack of awareness.

    1. Yes, we realize it's a thin liquid....since she only aspirated when the straw cup was pulled away and interrupted her pattern, they weren't worried as every single other swallow with thins was fine. Her feeding therapist here actually suggested the popsicle :) Thankfully her dysphagia is not as severe as many other kids! I think she really only got a very small fraction of the popsicle IN her mouth anyways LOL!!! Thanks!

  4. your girls are soooo cute! zoya always amaze me , she is so lovely and Mila wow she has grown up so much! such cute girls you have

    oh and love your stars tattos ;)

    1. Thanks Alicia!! I've been thinking about getting another's been a while since my last ;)

  5. I was so happy to find this Zoya/Mila feast of pics!!! They are just so precious. Your home must be so filled with joy on a daily basis! I love Zoya's obvious thrill on the carousel and I also love the bean imprints on Mila's chubby legs!!! Two little cutie pies for sure!!! (((BIG HUGS)))!!!

  6. I just the pictures of your lovely girls! Its amazing to see the difference in Mila!

  7. Oh my goodness how much she has changed!! She is gorgeous and not at all that scrawny little, sad baby you brought home! Keep adding more photos! I love them!!


    1. DEFINITELY not scrawny...anything BUT! hahaha

  8. My daughter is actually long and lean, we had to take in the smallest pair of hip helpers. But, for night time I didn't really want them to be quite so tight. It seemed too uncomfortable for sleeping. So, I took a pair of fairly snug leggings and sewed them together to the knee.It works great for nighttime.I have a friend who did the same thing with a one-piece pair of thermal underwear because her son kept taking his hip helpers and his diaper off every night, lol!

    1. Oh good idea!! Now I just need someone to sew those for me LOL. (I can barely sew a button!). Did you use leggins that were a size smaller than what she would typically wear, same size?? I REALLY like that idea because then you don't need to put them over anything and she could wear them as jammies and hip helpers! Thanks!

  9. Such beautiful little sweethearts those girls of yours are! Like you, I love that look in that photo of Mila and Zoya...Mila looking at big sister with such love!
    Zoya is doing an AWESOME job with her riding lessons--way to go, Zoya!

  10. Just so ridiculously cute. They are seriously squeezable. :-)