“Bumping up and down in [Life’s] little red wagon”

_dsc7816Well, the thing about going so long between posts is that there always seems to end up being both ups and downs by the time we write.  This time is no exception.  On the up side, the girls continue to grow in communication and in their senses of humor.  Zoe has learned several new words, including renaming John “Poppy,” and hiney (which I kept thinking all day was “ah-knee” until I saw her little giggle and remembered John working on it with her this morning).  She can say “Zooo-ee” and “Sawee wee” (Sophia), in addition to big (which she first used to describe her Mama), too (“me too”), you (which means “me”), shoe, sock, bubbles, potato (to to), “up high”, ball, dog, bath, wa-wa, hominy, shaker, egg, toast, soup, yogurt, tea, waffle, and too many others to mention (and many others we can’t quite understand yet).  She also seems to be getting some concepts that go along w/ the words–two, big, hot, blue, etc., but everything round and red is still an apple (including the Target logo).  She, of course, repeats everything.  One morning I was trying to get her up without waking Sophia (at 4:30 or so 🙁 ) and put my finger over her mouth and whispered “Shh.”  She repeated “Shh” as loudly as she could, and then when I said “Shoot” when I heard Sophia call out, she repeated that as well!  Speaking of whispering, she loves to whisper (loudly) in her Poppy’s ear and always tells him the same secret (“sha sha sha”).

Sophia’s favorite word to say is “bubbles.”  She gave Poppy a bubble machine for his birthday, and she loves to sit and watch the bubbles.  (We are working on blowing them too; she just started blowing on a little birthday horn (right after her teachers left))!  Blowing is good muscle development for speech, since she doesn’t get that eating practice.  She’s moving on to the harmonica next.  Of course our favorite word for her to say is “Papa” which she will often repeat when you ask her to; I hear her say “Mama” when I leave the room at night time, but that’s really the extent of it.  She still uses “help” and “up,” so we’ve been reinforcing “p’s” and “b’s” this week.  I’ve heard “no-no” twice now, so maybe that will be this next week’s sound.  She has also started shaking her head “no.”  Sometimes, I think it is just because it feels cool, but she does use it in songs like “don’t you let that cold air in.”  She, of course, can communicate many things to us just by taking our hands and leading and pointing or signing “more.”  One weekend she was very insistent that I go in their little collapsible tunnel, and I just kept telling her that Mama is too big, which actually eventually worked.  Well, I felt a little sheepish when I came in Monday afternoon and found Sophia, but no Grandma.  Turns out Grandma was in the tunnel!  I haven’t been able to get out of crawling through the tunnel since.  🙂  Sophia’s doing really well with repeating signs she sees and is also now starting to be able to request a certain person with her signs (when we are writing).  She has always loved songs with names in them and now is starting to love having you write names for her.  She is also really enjoying writing herself and spends a lot of time at the whiteboard and with her doodle pad.  They both still put most writing utensils in their mouths, so it is hard to do a lot of it, but they have fun.

The girls got to celebrate Halloween for really the first time.  We actually went out trick-or-treating (without really collecting candy).  Zoe wore a little bee costume that was actually warm enough for a cold Minnesota Halloween. Sophia wore butterfly wings over her jacket.  They had fun walking up the neighbors steps that they usually aren’t allowed to walk on, and Zoe, especially, had fun sitting on the chairs and benches on the neighbor’s porches.  That girl seems to be on a mission to find the perfect chair (today at an “educational materials” store, she noticed chairs way up near the ceiling when there were all kinds of things at her level to distract her).  Poppy let Zoe try a couple little Smartie candies, so she had a tiny taste of the holiday.  Throughout the day I kept reminding myself how great it was that we weren’t in the hospital this Halloween like we were two years ago, and then we found out a week later that we probably do have to go back in relatively soon.

Sophia’s cardiologist found a subaortic membrane in her heart.  It is creating an 18% gradient, which in an of itself would not be critical, but it is directing the blood flow to the same place on her aortic valve, which without a repair would likely lead to a valve replacement (which would be a much more serious surgery).  As it is, the surgery to remove the membrane is still open heart surgery (with the heart and lung bypass machine and all), so it is very scary.  I did a little research when we got home and found an article authored by a doctor at Mayo who argues that watching and waiting is an okay strategy because ultimately only 50% of the kids he was studying needed the surgery (although the article didn’t say why).  I (hopefully tactfully) asked our doctor about it, and she distinguished Sophia’s case from his research because hers has developed in the last 18 months since we’ve been to the cardiologist, and, therefore, isn’t as stable as those the other doctor was studying.  That said, she repeatedly encouraged us to have Mayo give us a second opinion, so we are waiting for our health insurance company to allow it since Mayo is not in our network.  Our doctor is also going to bring Sophia’s case to her “conference” with the other cardiologists at the U of M.  We think we will probably still end up in surgery unless the Mayo docs have something that would convince our doctor to change her advice.  She’s been conservative all along, but I think it has served us well (even though this would be the 3rd time she’s hospitalized Sophia).  Both heart surgeons that Sophia had before are now gone, but she says their two replacements are very well qualified.  If we do do it, it is non-emergency, but something she’d like us to do sooner rather than later.  I imagine we could also get bumped by someone else’s emergency.  It seems even scarier to think about sending her in when she’s so much more aware, but  yet still not really able to communicate about what hurts or what she needs.  She’s also not going to like having to sit in a bed now that she can walk.  The other thing that is different from the last hospitalizations is that we have little Zoe, too.  We don’t want to abandon her for several days either, so we are really going to have to tag team this.  I thought our cardiology visit was really just a social visit since everything had been repaired, but I guess it was a good thing we went in.  We’re starting to realize it is a bad sign when the doctor asks for the chalk to draw (turns out those blackboards aren’t just for kids to stay occupied).  On the bright side, Sophia did so well sitting still for her echo cardiogram and letting the nurse take her blood pressure and the doctors listen to her heart without any resistance.  (The residents and students all want to listen to her heart because it still has a little murmer that is insignificant).  If they do have to open up her chest again, they apparently can fix the pectis (raised breat bone) she got from the last surgery, so maybe we won’t need that brace after all.  I also asked if there was any way they could do her eye surgery (if it was needed) at the same time, and our doctor basically said heart surgeons don’t allow such nonsense with such a major surgery, which of course makes sense.

We asked about the eye surgery because when we were at the eye doctor a couple weeks ago, he seemed to think that Sophia was tilting her head to counteract an eye that would otherwise cross.  I had just thought her little head tilt was a cute little kid thing, but apparently new research shows that it is common for kids with Down syndrome to tilt to correct a crossing.  He wants us to come back in another month to check her without her eyes being dilated, but he doesn’t think that would have impacted it.  She always tilts the same way, and if you hold her one way she leans up against you and if you hold her the other way, she leans her head out.  He told us to go back to old pictures and figure out when it started, so we have a little job ahead of us!  Jane (PT) looked at her neck and didn’t notice any PT concerns, so we just have to figure out the vision issue.  I naively thought that she’d simply need cute little glasses to correct it, but it would require surgery to correct it, so we may have yet another hospitalization coming up.

We celebrated Poppy’s birthday at a Down Syndrome Association pancake breakfast–lucky John!  We got to meet some other little ones w/ DS and compare notes (and get reminded we have the best teachers in the City).  Zoe’s highlight was having syrup on her pancakes, which she now loves!  (I have to admit Grandma guilted me a little into letting her have syrup on her whole wheat pancakes and waffles…she didn’t think they sounded good dry at all).

Both girls have had their first H1N1 vaccine, and Sophia has had her second.  We got a letter from our clinic when Sophia was able to get it because she was on “the list.”  We got in the same day we received the letter, so that was a relief.  We dragged Zoe with us because the receptionist thought she could have it too if she was there and a “sib,” but it wasn’t to be.  Even though she is also extra vulnerable being under two, she isn’t as vulnerable as her sister.  She did get in two or three weeks later, though, so I’m very relieved.  Zoe has enough going on getting 4 eye teeth at once, so we could do without any illnesses.

They just finished their first trimester of ECFE and will be moving back to the Wilder site next month.  Sophia will really miss the ramp/slide/tunnel combo, but I think some of her current and former classmates will be in her new class, too.  Zoe seemed to start interacting more with the other kids near the end, but always spent time in the kitchen and with the little baby she loved.   (They got to spend time with a real live little baby this weekend, and Zoe was still signing “baby” all day today.)

We tried the indoor playground at Edinborough, and Sophia found more slides, so it was a big hit.  We also had our first preschool visit <sigh>.  Our little baby is growing up.   When she turns 3 in April, she is no longer eligible for home based services, so we need to send her to a preschool.  We could apparently send her sooner, but we are trying to delay this as long as possible.  We visited our closest neighborhood school, which happens to have an early childhood special ed program (ECSE), which integrates community “volunteers.”  It is sort of reverse mainstreaming; they bring 4 “typical” kids into the special ed classroom with 8 kids with special needs (I don’t think the teacher really meant it when she called them the “good kids.”  I hope she just meant they were modeling good behavior??).  Class is from 7:30-10AM, so it really wouldn’t be all that long, but much longer than she has been on her own before.  The teacher also said we could start “visiting” regularly to get her accustomed to her before she starts.  Zoe would actually be eligible to go as a volunteer when she’s older, which would be really nice so they could be together (plus, amazingly, it’s free).  Sophia went right in with all kinds of confidence, played with the other kids, interacted with the adults, sat in the teacher’s lap for a story, and all-in-all, seemed to enjoy herself.  We’re still a little traumatized about the idea of sending her into a big school with a class of 12 kids when it seems like we can hardly give her enough attention with only one other little person (plus, we are going to miss our Home based teachers like crazy).  We are meeting with them in the morning, so hopefully we can find out a little bit more about our options.  I have to admit I’m also a little nervous because I’ve heard about two recent cases where little preschool kids with Down syndrome (“runners”) left the school building, only to be found several minutes later…yikes!    We have another visit scheduled to the U of MN Lab School, which has slots for Mpls students with special needs, so that would be more of a mainstreamed option, but she couldn’t start until fall.  We can also visit other ECSE sites in the school district, so stay tuned, we may turn into homeschoolers yet!

Comments

  1. Hi there,
    I was looking for blogs of others with subaortic membranes just for fun tonite. My son, Sam had one that was repaired by open heart surgery Oct 22, 09 successfully. If you have been thru open heart before then it’s the same procedure. Not fun at all is it!! Good luck making the decision. I hope all goes well with Sophie!
    Tracey