Wow, I can't believe how time is flying. Payton is doing well in school and Koen is growing like a little weed. Koen is currently in the spiderman stage - about 85% of the time he is spiderman and loves to save me from the bad guys. He brings us so much joy. He loves to read, work puzzles, and do anything with a ball. We can't wait to be back outside this spring (and spring can't get here fast enough!).
Payton doesn't seem to care for school too much - she says it is sooooooo long, however anyone that sees her at school says she always has a smile on her face. Which, ofcourse, puts me at ease. They're still working on her fine motor skills and strength - she just really doesn't have much upper body strength. That's their biggest concern right now, so she will start going to the hospital for OT sessions once a week. She's excited because she gets to ride in the hospital van with the special education teacher (eventually a para will take her)....but more than anything she loves the hospital because of the treadmills. We're anxious to see how her focus is - we have a feeling she'll be way preoccupied with those treadmills. Behavior wise she does well for them at school. She did get the lowest score possible on controlling her verbal impulses, but that is expected with her. Even in church it's not unusual for her to just yell out "I LOVE PIZZA!" or whatever is on her mind.
We're having issues with her blood pressure again - running around 138/76 of an evening so we are working with the nephrologist to try to figure out what to do medicine wise. She currently takes her three medications at 7am, 10am, 2pm, 5pm, and 8pm.....so I'm guessing she may need to add another one in the mix somewhere. Ofcourse, I want to get it regulated before we go for her pre-op appointment Feb 25th and surgery March 4th (dental).
Koen's healthy as a horse. All we ever have with him are ear infections (we're treating one right now) but we don't think we're going to go another round of tubes. It would be his 3rd set and we really would like to see if he's going to start outgrowing it.
Koen and Payton are really starting to play some together and it's such a joy to watch. Payton doesn't play a whole lot, but when she decides to they really play well together. Koen is so patient with her and he really does make my heart melt. God really has blessed us. I don't know what in the world I would do without my kiddos.
4 comments:
I am so glad that things are going well. I can so relate to the random outbursts! :) Abi jumps so much from topic to topic it makes my head spin. Let me know if there is anything I can do to help...or if you just need to talk anytime...I am here!!
Tara I think Lila is the same about school. she tells me she doesn't want to go but evidently has a good time. I know for her she does not like to be pushed to complete stuff. Hell, homework with her is a trial of my patience. Sometimes i think how the heck are we supposed to do this for God only knows how many years, ugh. I have a parent teacher conference tomorrow and i know we are going to discuss her lack of focus. I am not sure I am ready for meds but will certainly do what we need to. I hear you about Spring! we need some sun soon. Hope Koen continues to blossom he is such a handsome little dude! take care
Tara,from reading your blog from the beginning, I see references to Columbia, KC, etc, so I'm assuming you live in Missouri. I live in Marshall, just north of Sedalia. My little grandson, 19 mo old, is in the process of being evaluated, with WS a fairly certain diagnosis; he fits the profile in every way. We've known for some time that something was wrong..he was/is lagging behind in his milestones. He was evaluated at the Thompson Center in Columbia recently; they diagnosed 'global developmental delay', with WS the likely cause,and referred him to a geneticist. My son and DIL are still reeling from this.We were expecting mild-moderate autism. Your blog both encourages and terrifies me. I just wanted to be in touch with someone who understands...thank you.
Blessings,
His Grandma
Hi 'grandma'. if you need anything, please feel free to email me at tlittlejohn@bartonelectric.com (just put williams syndrome in the subject line so I dont think it's spam). I would love to help out any way I can!
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