The Feger Family est. 2012: We're pretty busy these days! Update city!!

Ms. Matz donates her time teaching other's violin starting at age 3. We connected with her through Tiffany and her church. Clara was SUPER excited and loved every minute. Hopefully it lasts. Juliet is a little girl that goes to Tiffany's church and is sitting next to her and they do their lesson together.

We went into the playroom after since Juliet's big brother has a lesson so they could play a bit.

Clara carried the violin on her back for what seemed like hours. Her first lesson was learning the parts of the violin, they are ordering the girls one size smaller since the one she has is a bit too long so she suggested not playing it yet.

My two rugrats

This new walker is a bit too easy to get out of. I'm not sure if I've posted about it yet. It's a posterior walker which enables him to use more core strength and is the next step, the gait trainer walker had much more support, and also encompassed him so he couldn't just go to his knees and crawl away. He's in a really fun stage where he's realized he can do whatever the heck he wants and doesn't high five, repeat me when asked, eat, sign, play toys the "right" way, and also walk. I love that he's learning to be independent and make his own decision but WOW it makes getting from A to B tough so thankfully sissy was here to help. He'll pretty much do anything for that girl.

His little body at therapy. I couldn't resist taking this pic. His jeans now need to be rolled because he must have grown and thinned out and his pants fall, all of them. They all used to fit. Hmmmm...

This is how he stands regularly which makes the problem very evident, you can see the extension in his legs, he relies entierly on his ligaments to hold him up locking every joint on his body for stability. We were just fitted for knee braces which will prevent him from locking, that should go well. I wish I had emogies to insert on this thing. I had the perfect face for that previous comment in mind. We go to PT three times a week now, that was supposed to start in Sept. but let's just save a bunch of typing and sum it up with one PT of ours moved and three got preggers and our current only had one spot and they finally hired someone new. We also go to feeding therapy which we're working on self feeding and transitioning to a more age appropriate sippy cup. He is a great eater and eats a variety of food when he's not in the mood to refuse. I still feed him everything but pretzels. It's a healthy combination on lack of coordination, strength, and willingness that prevents him from feeding himself. I had a hard time settling in with the fact that he wasn't just being stubborn, because boy is he stubborn...but the therapist is certain after 14 years of therapy and working with kids with DS that there's a lot more to it than I'm understanding. So I guess all in all he's doing well with eating. He still struggles with swallowing certain foods, mostly meat. Getting certain foods to the back of his throat is tough for him and it's a fine tuned system I have that helps him swallow his meals in a timely fashion. I'm just wanting to push him and have him feeding himself so he doesn't starve all day at school next year, that's my main worry. We still have time, but I am very clear at how slow things move so it makes me nervous. We go to speech therapy for language. His articulation is getting better which means when he repeats words he's getting closer and closer. He said cat the other day just fine but it only happened once. He is blending sounds together and always getting a portion of the word correct. I know now when he's saying certain words and his vocabulary is amazing and always expanding. My confidence enlies mostly in his receptive language. He understands everything. I can't wait until he's able to get it all out. He has a HUGE vocabulary and amazes everyone with his ability to understand and follow direction, not to mention stay on task for an extremely long time for even a typical developing child his age. We see OT once a week and OT encompasses so much it's hard to narrow what we're working on it's so broad. Some things would be walking on his knees, all the fine motor skills like using toys where he has to use pincer grasp which he hates using, OT helps with self feeding and life skills like dressing himself and such. I love OT, I love all of his therapies and therapists, and they continue to change with people moving and taking different jobs. Everyone loves when we walk through the door and only compliment us which is great. His language speech therapist just got back from maternity leave and updating her on what she's missed over the last four months and really proven how much he's grown, I never see it day to day but speaking it out loud to her to catch her up helped me realize we are accomplishing a lot and our hard work is paying off. He is finding pictures in busy books, matching, and just the progress with his sounds has improved a lot. He can do puzzles and match the pictures for the most part, he knows about 7 general shapes, all his colors, he can count to ten...not on his fingers yet but I can hear how he says each number in his own way and it's consistent. He works so hard. I'm so super proud of him. We also have two sessions of therapy at home with an "interventionist" which isn't a therapist but I tell her what we're working on with him and she helps me, she's been with us since we left the NICU, her name is Justine and she's very nice and adores him so much. We're already starting the exiting process since they cannot receive state funded support from Early Steps Program after they are three. I go on the 18th to start talking about my goals for him and learn more about the IEP (legal document for school that states his specific needs and how the teacher(s) will meet those needs and reach his goals) process. There are five big meetings two of which assess him. Most moms go into these meetings like they're going to battle. I'm hoping to not have to do that. From my experience so far, everyone wants what's best for him and has agreed with what I think is best. I think one of my favorite compliments from his therapists is that I'm their favorite family. That I'm able to push him hard yet still maintain joy and happiness, not to mention his trust which I guess is a biggy that makes me sad to think about, that so many other parents push to hard to the point their child cannot trust them anymore and the relationship is broken. I'm glad they tell me things like that and keep me aware and cautious. Everett prefers men which I thought was odd for a while. For example, he's willing to let men hold him and gets nervous with women, even aunt's and close friends. I think it's because all of his therapists and of course his mama are all women and we 're the ones who are constantly pushing him. He's had many therapists and sometimes I think he generalizes and never knows a ladies intentions, he thinks he is going to have to do work and is learning to attempt to avoid it. That's just a wild guess. He does love his therapists and our new PT REALLY pushes him, to the point where I sometimes have to tell her it's enough, let's move on. Everyone else has followed his moves and I must say he is happier but we don't always get as much out of the session. I put on a dog and pony show to keep him happy during his PT session with his new girl and we have made it work and he is BEAT when we are done which makes me feel like that hour was well spent. I never want him to dislike therapy so I'll always put a stop to things when he gets too frustrated or pooped. That's why it's hard taking Clara to these new afternoon PT sessions because she wants my attention but I need to help distract Everett and keep him happy while working hard. The new PT is just getting used to him too so I know she'll figure him out. After sessions with her I want to go workout myself I feel so lazy being the one pushing him and his body is rock hard. He has so much strength but low muscle tone just sucks. It makes EVERYTHING, and I mean every tiny little thing so very hard, in fact it's 8x harder for them. Every single muscle in his little body has to work 8x harder than ours. Thank goodness he's a fighter and is so very determined. Oh, and we also have one other therapist who comes to the house for speech that we'll lose when he is three. :( We like her a lot and she's now pregnant, I've seen so many therapists through their pregnancies, it's so fun to watch the process. I'm also applying for a "preschool" for him. The speech department has a program for kids 2-5 one day a week for two hours for them to get acclimated to the school routine. I'm not allowed in. :( So I think it would be a good step for us both. He'd go in the room and sit at the table and do circle time and table toys and learn the norms of school which I think would be great for him, even the socialization aspect. I'm waiting to see if they have a spot and I'd have to leave early for work so I don't know if they'll allow that. It would only be one day a week but the trouble is there's no room in the schedule so something would have to go, it won't be PT...we'll see. Lastly he is still signed up for therasuit this summer. A four week program that he does 5 days a week for four hours. It's intense PT and OT. They are in like a bungy suite and it'll take over PT and OT of course. If he's not walking hopefully this would get him moving. The therapist said most of the kids cry through it all because they're too little and don't quite get it. I'll just play this all by ear because I certainly cannot handle that. Needless to say, we're staying busy. We also go to a DS playgroup once a month for interaction with other DS kids and families. I enjoy the connections I've made, it's nice to have people who "get it". I think everyone things I'm going overboard in that group, but what we're doing is working for us so I'm okay with it. Others don't quite do what we do, they dabble a bit more. I wish I knew how much all of our hard work was going to pay off in the end, but since I don't know we'll just keep doing what we think is best and hope for the best.

Daddy got a new truck. We all love it. We paid off the van when he sold his Lexus and now have one payment. We owe more on his truck than the lexus of course but they hold their value better and who knows when his car was going to start to need work.