Merry Christmas!

Catching Up

While adjusting to Life with V, H and E rocked second grade, and the beginning of third.  We were so lucky to have a kind and amazing teacher for them last year, along with the continued support of the rest of the team.  They learned so much, and were able to work through some of their challenges.  They were also really lucky to be in a class with a great group of about 10 girls who became good friends.  It was pretty much smooth sailing over the course of the year.

This year has gotten off to a good start as well. We chose to keep them together in the same class once again.  They have two teachers who are splitting one job, but both seem to be good solid teachers and the girls don’t seem to have had any problems adjusting to the unique schedule.  Our biggest disappointment at the beginning of the year was that none of their girlfriends from last year are in their class.  I might have been more sad about this than they were.  They have made a couple of new friends, but we have also had some “girl drama” that we had been lucky to avoid up until this year.  It seems to be working out ok for now, and both girls are happy at school and seem happy when they get home.  We had conferences last week and their teachers had a lot of positive things to say about their personalities and behavior at school, which is wonderful to hear of course.  Both continue to struggle with math.  It is coming along, but it certainly doesn’t come easily.  They are both great readers and enjoy reading, but sometimes have a hard time talking about, summarizing, or explaining what they have read.  This makes it tricky to know exactly how much they comprehend when they read independently.  I am certain this skill will come with time. 

E loves to write, and has many fabulous ideas and stories to tell.  The physical act of writing continues to be a barrier, and we are always working on ideas for helping her get her ideas onto paper the most efficient way possible.  She has an ipad at school, and her aide often helps as a scribe, but a lot of the time E just wants to write it herself.  She is allowed to do this much of the time, but it slows her down and even though her handwriting has greatly improved, there are still times it is hard to decipher what she has written.  E has patience and determination in abundance, as well as a natural curiosity about the world, and will work diligently to achieve her goals.  Her current project is making rubberband bracelets using a loom.  This is all the rage at school for girls her age right now, and when we saw it at the store she HAD to have it.  We bought it for her assuming she would probably not be able to do it independently, but I enjoy that kind of thing and would be more than happy to help her.  Well, she once again proved us wrong and worked at it for a day or two before she was able to start making bracelets all by herself!  She is very proud and is working with dad to launch her very own website to sell some of her creations.

H also has good ideas and likes telling stories, but she really doesn’t like to do a lot of writing.  It continues to be a struggle for her to get started and to stay focused long enough to complete many tasks.  She does not have a lot of patience for tasks that require sustained mental effort, particularly writing and math.  She continues to have infinite patience and enthusiasm for video games and pretend play.  Her passion for Pokemon has dwindled somewhat over the past couple of months, to be replaced for the moment by Harry Potter (we just finished book three) and Animal Jam.

Both girls are doing Brownies again this year, and finished up two seasons of Miracle League Baseball at the beginning of October.  H started Choi Kwang Do lessons twice a week last February and recently tested for and earned her gold senior belt.  She is doing an awesome job with that!  E continues to ride horses 1-2 times per week at two different barns, one for hippotherapy and one therapeutic riding, though they are currently on hiatus for the winter.  H went to a week long drum camp over the summer, and has taken a few drum lessons.  E has had one piano lesson with her aunt (J’s sister) and is interested in continuing as we have time and can coordinate schedules.  E went to a sign language camp over the summer and really enjoyed that as well.  She would love to take lessons or a class to learn more but I just don’t think I can cram one more activity into our lives at this point.  Not and still maintain my sanity!

There are still so many holes in the blog due to the super busy nature of our lives. 

I never talked about the horrible illness E had last March that caused her so much pain and loss of function, and brought our lives to a major standstill.

I never talked about us looking into the possibility of a second cochlear implant for E, starting the process and the necessary testing. We are still on that path with another appointment coming up soon.

I never talked about ordering and receiving E’s new pink power wheelchair, a Permobil M300, and its pros and cons. That was quite a process (and still a headache).

I never talked about going to the Abilities Expo in Chicago in June, and all the cool things we saw and the nice people we met.

I never talked about our super-fun summer vacation to Michigan’s Upper Peninsula, Mackinaw Island and Tahquamenon Falls.  It was our first vacation as a family of five!

I never talked about H finally hitting a growth spurt and surpassing the 40-pound mark!  I also didn’t talk about her newfound love of mac-and-cheese for breakfast…everyday.  Who knew?

I didn’t talk about J and I celebrating our 15^th wedding anniversary and our 20 year anniversary of being together as a couple.

What a journey it has been!

Life with Vi

Somewhere around the 5-month mark V turned into a super-delightful, good natured, sweet and silly baby.  She is very affectionate and loves to give hugs and kisses to her family.  She pats us on the back and says “Awwwwww.”  She is a little mimic, with her head-tip, vocal intonations, and hand gestures, acting like she is having grown-up conversations with her jibber-jabber voice. 

She has been a slow-starter with eating; not expressing a lot of interest at the 6-month mark when we started introducing some foods.  She didn’t want a whole lot to do with food until closer to 9 or 10 months, and preferred to self-feed over baby food.  Even now, it is somewhat hit or miss.  Some days she feels like eating a lot, and other days she throws everything on the floor and wants nothing to do with it!  She is a fruit-head, and will almost always chow down happily on blueberries, strawberries, watermelon, and grapes.

She still loves to nurse with Mama.  She tugs at my shirt, says, “dis,” and signs milk when she wants to eat.  She is an active girl, often trying to stand, bounce, and do headstands while she is nursing.  She never had a problem going between bottle and breast, but if Mama’s around that’s what she wants.  She sleeps in our room in her porta-crib, and still wakes at least once a night to nurse, though most night it can still be 2 or 3 times…or a million.  I would love to sleep through the night again some day.

Here’s some shocking news for you…she is small for her age!  She was holding her own, near the bottom of the weight growth chart until 6 months, then at her 9 month appointment she fell right off to the 0 percentile.  Recently, at her 15 month appointment she was still at 0 for weight, but near the 20^th for height, and near the 70^th for head.  Big brains, little body.  It runs in the family. She currently weighs about 17.5 pounds give or take (isn’t that a hoot…I don’t even really know exactly).

She has also been a slow starter with gross-motor skills.  At her 9-month physical the doctor expressed some concern that she wasn’t crawling yet, and suggested that I contacted early intervention to have her evaluated.  I didn’t, but I did have 2 of E’s PTs look at her informally.  They both agreed that she looked fine, everything was coming along “within normal limits”, and they gave me a few suggestions for things we could do to help her along.  She started crawling around 10 months and walked just before 15 months.  That would be 9 and 14 months if you account for her prematurity, but whatever, right?

What she lacks in the gross motor area, she makes up for in cognitive development and language.  At her 12-month appt we counted about 20 words that she was able to say. By her 15-month appt we lost track.  She talks so much and gains new words and concepts every day.  She knows most of her animal sounds (including “What does the fox say? ding, ding, ding, da-ding da-ding ding”), many body parts, hand motions to songs, and names of family members.  She is learning tons of signs now, and recently learned to sign “nurse, please,” making it impossible for me to tell her no.  She tells herself, “no, no” right before she does something naughty.  She says “caca” before eating gross stuff off the carpet.  She loves to empty all of our cupboards and cabinets, and the only time we have we have peace and quiet is when she is happily emptying one of her “stations.”  She is SO LOUD!  Her voice demands to be heard.  She screeches so loudly that we are (jokingly) afraid our ears will bleed.  H and E still sleep with a monitor in their bedroom because we cannot hear them when they call for us, even though they are right across the hall.  We can hear V clear across the house, no monitor needed!

She is gorgeous.  We see a little bit of each of us in her, but she has a look all her own.  She has big, bright eyes that strangers always comment on.  They used to be gray, but are turning brown.  She has shaggy, stick-straight hair, with beautiful blonde highlights that hangs right in her eyes.  The moment she realizes there is a barrette or ponytail in her hair she yanks it right out.  She has 10 teeth (6 on top and 4 on bottom), and it seems a couple more are on their way soon.  4 of her teeth were in at 6 months, and she has the most adorable toothy grin.

She is silly, silly, silly, and makes us all laugh every day with her antics.  She is strong-willed and demanding, and annoys us every day with her antics as well (especially the food-throwing).  She is most of all, extremely lovable.  She adores her sisters and they adore her…mostly…when she isn’t grabbing their glasses, pushing all the keys on their computer, or screaming loudly at the dinner table.  E enjoys carrying her on her lap in the baby bjorn when driving her powerchair.  H enjoyed walking her around holding her hands when she was first learning, and now enjoys playing “chase” with her.  They both love watching her learn new things, and giggle at her silliness.

There have been moments of jealousy and frustration because she does demand a great deal of attention. H and E were used to being at the center of our universe for 8 years, so it has been an adjustment for all of us, but all in all, our lives have been enriched by having this little ball of energy and light join our crazy family. 

We wouldn’t want it any other way.