Friday, October 24, 2008

Updates all around

Brianna's made a few big "firsts" this week! She came up to me while we were eating a staggered dinner the other night and she touched the front of her diaper while fussing. I took her to the bathroom and she peed and pooped in the toilet! She's been BM trained for over a year (mostly) but she rarely wants to go to the toilet to pee. It was a one time thing so far, but it's definitely a step in the right direction!

Brianna is also walking so much now! She's picking up the pace a little as well and is falling much less often. Along with walking has aparently given her a new independence in climbing :) I brought her and Micah out to the van together and put her on the floor part of the back seat (closed the back door so she couldn't topple out) and I put Micah in. I jokingly told Brianna to get into her seat. She did! She climbed up onto the van seat, over top of Emma's carseat and over to her own! I buckled her in and couldn't deny the request for a video while we drove :)

On Tuesday with the busyness of getting K and Bria off to school then the dr's appointments I had about 30 minutes to waste and decided on the park. I put E in her chair and M sat on the picnic table and together we put alphabet letters onto pages. I'd hold up a foam letter and say "B, look Emma, B" and I'd sign it then do the same for Micah. Believe it or not they were both focused on what we were doing! I then would put it onto its page, press it down, and I said "yay, B". With that Micah started clapping. Ok... let's encourage it :)

So with each letter I showed it to them and said "yay ___" as I put it in the book and both of them clapped :). This is a big step for both of them because it shows that they're understanding a sequence, even though it's slightly different each time, and there was even anticipation by each of them when they'd start to clap before I did the "yay" part :). The best part came when I was putting them in the car and Mike had called. I told him about our activity and explained that when I said "This is an M..." then "yay M" the kids would clap. Well, while I said the first part of it, Emma started clapping :) She'd transferred the activity to a different location, didn't have the visual cues, and she anticipated that I'd be saying "yay M" next :) :)

Kristopher has found his own little natural knack for computers. We were given a used computer for him last year around Christmas time and he's had it set up in the office since then. He has a few games, KidPix being his favorite, and can do most of the things he wants to without any help. He'll go back in there and sit on the computer for 30 min or so then he'll be called back out and rejoin us. Well, I was thinking that it's about time Brianna gets a little turn at the computer as well and we moved the computer out to the family room and set it up on the coffee table. The kids' chairs are a perfect height to use that as a child's table :) I've been so impressed since bringing it out here at the extent which he knows how to do everything!

Emma is able to sit up for much longer periods of time now and is enjoying her new perspective on things! She smiles when I go to get her in the morning or cries if she's awake and wants to be heard (at least, she's started this occasionally... she still often wakes and stays quiet). Her wheelchair has done a lot of good for her posture and sitting position. She has also learned to lean her head back a little when her neck is tired so it will lay on the headrest instead of hanging her head forward. This is so much better for her back and neck!

Emma's feet are also growing! She's been in an infant's size 3 shoe since coming home and this week she moved up to a size 4 :) Growth is a sign of health, right?

One morning this week Brianna was excited about everyone getting dressed and decided she would help. We have baskets on our changing table and one is full of shoes. Shoes that fit, shoes that don't fit, dress shoes, sneakers, etc. With four kids the shoe basket is full and there are probably over a dozen pair of shoes in there. Brianna went through the basket and found her own shoes, Micah's shoes, and even Emma's shoes she'd only worn the first time the day before (and her old shoes were in there but Bria picked out the new ones). Bria brought each pair of shoes to its owner :) I'm so proud of her! It's great problem solving and matching skills! And the best part is that she initiated it and did it all on her own :)

We're building some books- I mentioned the alphabet one in my comment about the park. One of the pieces of the cruise was a few conference type components. I enjoyed one done by Emily Perl Kingsley that was about homemade materials to use for prereading skills. I'll go into more detail in a later post, but these books are turning out to be a great learning tool for everyone, regardless of their learning level! Kristopher practiced with his scissors and with coming up with beginning letters while cutting things out of a magazine for our books yesterday :) Brianna is using the body parts book to say "eye" about each and every eye on the page. Micah and Emma are clapping and responding to the repetition of the learning environment. Even if the kids don't love the books when they're finished, it's well worth it to just go through the steps of building them!

Mike started a new class last night so he's got this one through Christmas time I believe. He finished out his last class better than he thought he would which is wonderful. He finally got a gym membership at the YMCA (with a scholarship) and has been able to go workout a few mornings a week.

I feel a little better today but didn't sleep well last night since Micah and Emma were both up at some point in the night. Mike took over for Micah while I was asleep on the family room floor with him which I appreciate! The kids all slept until after 7 and Emma until after 9 so at least the morning wasn't rushed.

Oh, yesterday I took Emma to the cardiologist for follow up after her ER visit as well as her 1 month checkup. The right side of her heart is still "thick" and has a loud sound still but she expects that's from the advanced PH and will decrease with time. Dr. N still wants to take E off of Lasix soon so we're backing down a little more right now and giving it to her just once/day for a month. After that she'll come off it alltogether and 2 weeks later she'll go back to the Dr (6 weeks). If there's any concern or change in appetite, etc. during that time we should restart at the least dose she was ok on and wait until the next appointment. Dr. N also hopes to get her off of Enalapril at the next visit in 6 weeks. We'll do an echo at that time before making the decision. Overall a pretty good report. Dr. N thinks the bruising was a temporary drop in platelets that E recovered from before we decided to bring her to the ER. She said that one of the things that's more common in the population of people with Ds is these drops and raises of platelets. She was glad to hear the plan of our ped. for followup and didn't seem concerned that there was any additional issue with the heart that would have caused it based on that exam.

That's all from here, today's going to be a restful day (I can hope, right?) and we'll just hang out at the house. I'm cancelling all 4 kids' dr's appointments to get flu shots since Micah's not feeling great already and neither am I. I think I'll bring them all to the health department next week and get them- much better than $120 worth of dr copays if I have them done through the pediatrician's office!


  1. I wanted to say wow, way to go, and congrats on all the progress. I love reading about new things learned and new accomplishments!

    Everyone seems to be doing really great! :)


  2. WOW, so many positive changes, I personally have been dying to ehar how the kids were doing and this post made me happy! I would like to hear more about the books, i hope you post soon about them.

    Our best to your family,

    Kris and Tom

  3. So much wonderful good news! Your children are just progressing by leaps and bounds. Brianna's shoe-finding skills are impressive, and Emma's response to hearing the letter "M" is just great - of course, "M" sounds like the first part of her name. Do you ever call her "Em" or "Emmy"? Perhaps she was especially excited and responsive because of this.

    Books are the best! So glad your quartet are all book-lovers.

    I hope you feel better soon -Airborne always helps me with colds, along with forcing fluids, resting, hot tea and the usual traditional home remedies.

    Susan in Ky

  4. Yay! to everyone! (clapping)

    This is lots of good progress and news! So glad to hear it all.

  5. Horray! They are all making such wonderful progress! What a blessing it is to see them improving, and so quickly too! I'm impressed with Miss B's matching skills, really great!