Living life as a family of five has been an adventure! So many things have happened since Aleks and Milena came home in August. We've been busy managing doctors appointments, surgeries, IEP meetings, other school meetings, half days, holidays and everything in between! The kids are doing so well overall but life is not without difficulties.
Claudia has grown in so many ways since Milena and Aleks came home. She recently had her 3 year school review and has made huge progress in the past 7 months alone. Having siblings has helped her so much! When Claudia came home just over 3 years ago, she tested in the 9-18 month range in most areas; she is now testing as high as 48 months in some! Claudia continues to use ASL as her primary method of communication but I still have hope that she will one day find her voice and will be able to communicate with everyone. Her frustration levels have decreased so much and we don't see negative behaviors nearly as often.
Claudia adores her little brother and can often be found getting his pajamas and diaper ready at bed time. She likes cuddling with him and also wrestling around on the floor. One of these days I think he'll be bigger than Claudia and then she'll have her work cut out for her! She loves her brother all the time... except for when he pulls her hair! Just a little ironic huh?
Claudia looks up to her big sister, Milena. She frequently wants to do whatever Milena is doing. Claudia has learned a lot from her including how to help clean and clear the table. Claudia is learning to be more independent all the time although she regresses occasionally when she wants attention and won't eat unless she is fed. She does get jealous at times although it's nothing more than any other siblings.
Did I mention how much Claudia has grown physically? I don't know exactly how much taller and leaner she has gotten but just comparing pictures from even just a year ago is amazing! She'll always be small but she's growing!
Milena's English is getting better all of the time. She still struggles with who, what, when, why and how. At this time she does not have a handle on those concepts. She is learning sight words and doing well with phonics as well. One day she'll love to read just like her parents. Her self care skills have improved and she is very independent. Milena is a super sweet girl which has led to a few boundary issues that we've mostly worked out. She really wants to please people and can shut down at times when she thinks someone is mad at her. Milena loves her family and loves being a big sister. Milena is a good big sister but can be bossy at times, so we're working on that. She wants to help out, sometimes a little too much... Milena is such a great child although we do have some struggles. The most difficult things we are dealing with right now is her story-telling. Milena struggles with truth/lie, reality/fantasy and wants to please people by answering their questions how she thinks they want them answered, not necessarily the truth. This has led to some difficulties with the school and we're trying to figure out how best to handle this. I can't believe that we're going to have a teenager in less than 6 months!!!
Aleks has come a long way since August. He has finally been putting on weight, about 2lbs since coming home. He can eat most of the foods we eat (cut up very small) instead of just pureed food. Aleks will eat almost anything although he does not like anything to do with apples! He LOVES his veggies though, so I can't complain. Aleks went from drinking strictly from a bottle to using a straw and is even doing some open cup drinking! His heart looks great and he has been weaned from his pulmonary hypertension meds! Aleks has gotten so much stronger, he's not the wet noodle that he was when he came home! He's been walking short distances unassisted and can walk pretty well holding one hand. Aleks is paying more attention to his surroundings and responds to his name. He has learned his first sign ("more") and is using it appropriately. Aleks still struggles with playing with toys appropriately, he likes to bang things and make loud noises! Our biggest struggles with him are the self-harm. Lately Aleks has been punching himself in the head and face and laughing about it. The self-harm behaviors are so hard to watch! He's also gotten into pulling the hair of others and smacking at people (mostly me) at times. I really think he is beginning to understand when he does something wrong but he just gets a big grin on his face and laughs about it. We're working on these behaviors too. This boy is such a ham though!
As a family we've made day trips to the local parks, the play museum and the zoo. It's not easy to get out with all of the kids but it is so worth it!
Jason and I are still figuring out our "new normal." We still have some doctors appointments to tackle and we'll be glad when we're down to just routine visits. Our house had not been clean in over 7 months and the laundry and dishes are never ending but things could be so much worse!
As you can see, it's not all sunshine and roses but we take things a day at a time and count our blessings. Things have gone so well and could have gone a lot worse.