Em at 13 Months

I had originally planned on ending the monthly Em series when she turned one because I didn't want to be that obnoxious mom who over did the baby posts. But Em is different, and she's had quite the impressive month, so I felt inclined to share.



I'm constantly impressed with how well she is doing. Each night as we're all together as a family I can't help but feel overwhelmingly emotional for how blessed we truly are. I met another Holoprosencephaly mom over the weekend and she was telling me that they had done a study where they were comparing the capabilities of 57 or so other children with Holoprosencephaly and out of the group, only 7-8 of them ever walked. I don't share that to brag that we're on the brink of becoming a member of this elite group of walkers (because we're years from that). I share this because I think people often forget the severity of Em's condition. And it's just another testament of the many miracles we've seen. 

I sometimes feel guilty for thinking we've got it hard when I see the parents whose children suffer from the severity of this illness on a daily basis. They're heroes. I admire them so much, and I look up to them more then they'll ever know. It's through them that I truly feel like I've gained so much love and compassion for not only my family, but the entire world around me. This entire adventure has truly given me a better capacity and understanding to see people as the Lord sees them, and not as the world sees them. 

My friend sent me a quote a few nights ago by one of the Apostles of our church that says, "I bear witness of the day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind." Does anyone else get a lump in their throat and watery eyes reading that? I can't imagine that day. Em is already so beautiful, so perfect, and so amazing to us, that I can't even fathom what an amazingly incredible experience that is going to be. 

This month Em has started to sit unsupported more. Last week we got her to sit independently for an entire minute at two separate occasions. We've been waiting for this milestone for so long, it almost feels unreal that it's actually here. Our physical therapist says she's on track to be sitting independently for five minute intervals by the end of the month. She also says that Em should be able to spin in circles on her belly for the beginning stages of crawling by the end of the month too. 

Em has been sleeping so much better lately! We've only been having to get up with her once in the middle of the night for a feeding, and then she sleeps the rest of the night. We've all been doing a lot better with this extra sleep. We also finally stopped swaddling her. It was this situation where she was a terrible sleeper and swaddling was the only thing that gave me control like I was able to do something about the situation. Once we finally ditched the swaddle though is when things got a million times better with her sleeping habits so I'm assuming we were our own worst enemy in that department. You live and you learn right? 

Another amazing thing is that Em has started waving bye! At her one year check up the nurse told us this was one of the skills she would need to have by 15 months to be considered "on track" (there were a bunch of other ones but they all involve walking so I knew we wouldn't get them), and this last month she's been waving bye like a champ. I'll leave the house at night to go on my run and Derek will say, "wave bye to mommy!". and she does it, and it kills me every time. 

She's also been saying, "yeah", a ton this month and it's the cutest thing ever! "Do you want more food?", "YEAH!" "Do you love me?". "YEAH!" It's the absolute best! She also says "dada", all the time and, "Moooooommmmmmm", in the middle of the night when she wants to eat. She's a keeper this one. 

Her eating has also been really great this month. We finally started introducing more table foods in addition to her purees. She still eats 3-4 containers of pureed baby food, and about 20 ounces of milk, but we've been giving her mandarin oranges, green beans, entire bananas, scrambled eggs, peas, and she's been doing really well! She feeds herself all of these things using her little pincer grasp and it's the cutest thing ever! We only had to perform the Heimlich once last month which has been a great improvement. She is also starting to self feed herself water from a sippy cup while lying down on the floor which is another thing we've been working tirelessly on. 

I know I say this every month, but we seriously love this girl so much. She fills are home with so much joy and love and she has given us all a strength we never knew we had. She's the glue that binds us all together. She keeps us anchored in our testimonies and is a constant reminder that miracles do happen.

The Entire Em Series:
Why We Bought Em A Wheelchair
Em at 11 Months
Em at 12 Months

3 comments

  1. Wow! That is so wonderful to hear how much she has improved over the last month! That girl is going to be a sitting machine before we know it! :) How adorable that she's waving bye! Too cute!

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  2. Congrats! I am so thrilled for you all. She is darling. Love your family so much.

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  3. I'm so happy for y'all with all of the progress she has been making! She is such a sweet little girl and I love seeing her cuddled up to you in church. When I saw your picture on instagram sitting up without support on the pony, I was cheering over here!!

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