John Paul Update – April

This week a friend from our parish who is a master carpenter came and built a ramp in our garage for John Paul’s access.  Eventually we will move the washer/dryer out of the mudroom and widen the doorway into the house so he will be able to drive it into the house.

IMG_3702 He does very well steering it around outside, and loves the ability to move freely where he wants to go; so much of the time he is still dependent on me or Patrick or someone big enough to carry him (George does pretty well, actually) where he wants to go.  But the chair gives him a new freedom. He is still really hesitant to drive it inside (I drove it around the back and into the basement for the winter so he could try it out..and he wouldn’t touch it). I think because it’s unfamiliar territory and he’s afraid to crash it.  But he might just need to get used to the idea and grow a little bit. IMG_3699

In order to access the basement and the upstairs in his chair, we will eventually (years down the road) need to install a lift, which will be kind of a huge expense and will probably involve pretty intrusive renovations.  But that is down the road. For now, he is still light enough to be carried, and prefers to move around inside the house without using his powerchair.  It’s possible that this will always be the case.  Perhaps with surgery and therapy, he may even be able to stand on his own someday.  But we will try to at least give him the option to use it if he wants to.

Other news on the JP front:

  • we met with the school system to qualify him for the special needs preschool program in the fall.  It’s hard for me to believe he is old enough to go to school!  I really liked the therapists we met with, and I think that school will be very beneficial for him.   My dream is that one day he will be able to go to school with his brothers, if our school could ever accommodate his needs and if his speech improved enough that he didn’t need speech therapy.  But that’s for some future date and for God to decide! For now it is helpful and a relief to have access to the resources of the public schools.
  • He continues to see a speech therapist weekly, and has made huge progress (in lots of little baby steps). He can say “I want ___” if prompted, he uses pictures as prompts to communicate with us.  He makes several new consonant sounds, “d” “B” “sh”, etc., mostly babbling and not connected to any particular words.  But you can tell he’s experimenting.  I would guess, speech-wise, he is doing now what a 12-18month old does. But cognitively, he is right on track with a 3-year old (read: lots of will power and lots of tantrums).  As you can imagine that causes a lot of frustrating situations, but the picture prompts and the few words he says certainly help. (He knows a few signs, too.  signing “water” is adorable)
  • His platelets are so steady, that we only see the hematologist twice a year now! we check them every 3 months.  Sometimes he has little bruises show up, but other than that, we hardly even think about it anymore.  Much, much different than that first year.

Generally speaking, he’s keeping me busy, but he’s doing really great and we’re enjoying the spring weather and trying to stay out of trouble!

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Nashville Bound

I’m returning to my little, old, much-neglected blog here to post some photos.

We all spent a week in Nashville for Easter with my family.  It was a great trip — we all stayed in a big house that had a ton of room for everyone.  We were able to go to the Motherhouse for Easter Sunday and Sr. Mary Grace came back to the house with us for brunch and an Easter egg hunt.  My cousin John and his wife Anji, who also live in Nashville, also came over for brunch. I had never met Anji, or their new baby Finn, who is should be inducted into the hall of fame of MOST ADORABLE BABIES EVER.  So that was really, really fun!

We did fun things like go to parks and play frisbee and corn hole and watch the NCAA games on the big 10′ movie screen that was a feature in the vacation house. We went to a really awesome toy store. We drove out to Sr. Mary Grace’s school and saw where she lived and worked (she’s a principal at a small town K-8 Catholic school outside of Nashville). We ate a lot of yummy food. (A LOT of food. Well, not on Good Friday, but from Easter onward, of course.) The weather was beautiful, nothing too disastrous or bad happened (I’m always waiting for one of the boys to break something, of course), and it was just a great week.

Nashville is a nice central location for all of us to gather, since  the Motherhouse is and  always will be Sr. Mary Grace’s home base and Joannie lives there, too.  But it’s also lucky for us that the place that we can most conveniently visit our sisters is also a really fun city with a ton of fun stuff to do and great food and great music. (The only downside to this is that more and more people are discovering Nashville’s awesomeness and we noticed a significant increase to the traffic congestion than in the past.)

On Easter Sunday evening Joannie invited a good friend of hers, a musician who is also a priest (Kevin McGoldrick -you can get his album on iTunes and his website!  it’s really good!) and a couple of other musicians (Colm Kirwan and Bradley Banning – both really great guys and very talented) over for dinner and dessert and in true Nashville style we all sat around the living room for some great music afterward.   Colm is from Ireland and so the boys wanted him to play the Rattlin’ Bog, and he very kindly obliged, even though it’s probably the most boring song to play since it only has two chords.  But we sure had fun.

As a bonus, Thomas felt compelled to join in the musical sharing and got out his violin and played us all a rendition of his Twinkle Little star variation.  So cute.  The guys were all very kind in their compliments and I was proud of him for not being too shy to play. I know I never would have!

There is another blessing about visiting Nashville, for me at least, and that is because there are several individuals who, through my two sisters, knew and prayed for John Paul from the beginning.  We were able to visit with some of those people and share all of the ways in which their generous prayers have been answered.  It is a special joy to know them and see how far and how deeply John Paul has had an affect, just in the short time he has been in the world. That for me will always be something I hold onto.

Here are some of my favorite photos from the week.  But there were really so many great ones, and videos too, that I couldn’t help myself.  Scroll all the way down for a video journal of our week of Nashvillian adventure — mostly just photos of us being silly and not much of general interest, unless you know us!  Mostly I just like wasting time using iMovie.

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Easter In Nashville 2016

Snowsravaganza of 2016

This week, as you may have heard if you have a pulse, there was a big snowstorm on the east coast.  We were tired of it before it started, and embarrassed at the spectacle we made of ourselves once it arrived.  I could feel the entire city of Buffalo collectively rolling their eyes at us.  I couldn’t stand to get on Facebook because of the inundation of photos of snow-covered patio furniture and cars.

There’s a hilarious post out there comparing snowstorms of the 70’s and today…did you read that? …i’ll try and google it —> here it is. Hilarious.  and so true.

However, two feet of snow IS a big deal.  In our little corner of the world, where the snow that does accumulate rarely lasts for more than a day, we had a blast sledding and playing in it as soon as it started falling. Our backyard is one big hillside, so multiple sled tracks were constructed by the end of it. Even John Paul got to go down a couple of times.

Here’s a ‘video journal’ of our fun times in the snow.  All obnoxious over-reporting and over-sharing aside, it was definitely a memorable snowfall, and one that the boys will be talking about for a long time!

MMD’s 2016 Reading Challenge Booklist

Here is my book list for Modern Mrs. Darcy’s 2016 Reading Challenge.  My friend Sherry told me about it and a few of us are taking part.  You should too!

MMD-2016-Reading-Challenge

A Book Published This Year:

Same author of Mr. Pettigrew’s Last Stand, which I really enjoyed.  This was also recommended Sherry, who always seems to know what books I will like, so I’m looking forward to reading it.

A Book You Can Finish in a Day:

This is my husband’s favorite book (it’s actually a poem) to teach for American Literature class, which unfortunately he doesn’t teach anymore. He absolutely loves it, and in fact when he taught it to his students, they loved it so much that they got all of their parents to read it, and he gave a little evening lecture/book club on it so they could all talk about it. I’m sure he would disagree that it could be read in a day, since he says it is a poem to be closely and carefully studied to appreciate its greatness.  But it’s short, and I’m going to try.  I can always go back and read it again later.

A book you’ve been meaning to read:

Before Christmas I was in a cute little coffee shop buying Christmas gifts and the owner was telling me about an event they held at the shop recently with a local artist.  They had readings from Alice and the artist had a gallery-type showing of their collection of pen and ink prints from the story.  There were still several prints on display that day, and they were enchanting.  And then I realized that I have never read the story through from start to finish.  I think we read excerpts in grade school, and of course I have many Disneyfied images of the story in my head.  So I promised myself that day that I would read it soon.  It’s enigmatic to be sure, but there’s a sense that it’s one of those books that everyone should read at one time or another.

A book Recommended by your local librarian or bookseller (or Goodreads):

Rather than trusting a stranger, who has no idea what kinds of books I like or what might interest me, I decided to go with a recommendation from Goodreads, based on books I’ve read and saved. I guess that’s kind of boring and safe to do that, and not very challenging, but the time I have to read is so limited, I don’t like to waste it on books that i’m going to find offensive or boring or absolutely hate.  So this one was pretty high up on the list, and it sounds pretty interesting. It’s the first of a series of historical fiction about Williamsburg, just a hop, skip and a jump away.  Also I think the cover is marvelously cheesy, so it’s got that going for it.

A book you should have read in school:

I’m going to hate this one, I know it.

a book chosen for you by your spouse, sibling, child or BFF:

Joannie chose this one for me.  It’s about Rome, isn’t that a shocker?  I don’t mind at all, though – she told me a little bit about it and it sounds fun.

a book published before you were born (1979):

a book that was banned at some point:

a book you previously abandoned:

I started this not long after I was out of college, and I can’t imagine why I never finished it!  I started it not long after reading The Moonstone by the Wilkie Collins, and I loved that book. So I’ll give it another go.

a book you own but have never read:

This could also fall under the ‘abandoned’ category. And actually, almost all of the books on this like fall under this category. I thought it would be a good Lenten read (right around the corner).

a book that intimidates you:

Yeah, we’ll see about this one.  It’s like a bazillion pages long.

a book you’ve read at least once:

Read it twice, loved it; probably my favorite of Jane Austen’s novels. Wish me luck! I guess we’ll see in 2017 how I did….

John Paul Update: at 30+ Months

Happy Advent!  I thought I’d take some time to write a little summary of how John Paul is doing lately, since it’s been a while.  Recently, we had a couple of appointments at UVA that went well.

First of all, we had a follow-up with Orthopedics, and the x-ray confirmed that his right leg bone is completely healed.  It now looks like a solid bone from hip to ankle, with the floating fibula kind of ending somewhere above where a knee would be.  I’m not sure what you would technically call this bone, since it’s both a femur and tibia.  My sister Joannie recently dubbed it a femibia, so I think that’s what we’ll call it!

November 2015

John Paul has completely recovered and adapted to his new leg now.  He hops around like nobody’s business and you’d never even know he had had it any other way. He still has the scar, of course, and probably always will.

In other news, probably more of note, we saw a developmental pediatrician recently which gave us some professional confirmation of what we had been suspecting for a while now.  He performed a few intelligence tests to see how John Paul’s neurological development is going and assessed his speech.

He held up a paper with about 8-10 pictures on it: a dog, a flag, an apple, a star, etc.  John Paul got almost all of them right.  After about 8 correct answers, he missed identifying the word “leaf” – and I’m sure it’s because he just doesn’t know what a leaf is yet- So he pointed to a picture of a purse (which he wouldn’t know either – in fact, I think my 5 and 7 year old boys would have trouble identifying a purse). Anyway, the doctor was very pleased with him.

The second test was a puzzle with circle, square, and triangle pieces.  He took the pieces out, held the circle up, and asked JP to point to where it should go.  JP went one step further and took the piece from the doctor’s hand and placed it right in the circle hole. He also did the same for the square and triangle.

The real kicker was the next test – the doctor took the pieces out, flipped the puzzle around to see if he could put the pieces in in reverse.  And John Paul didn’t even skip a beat. This test in particular demonstrated that he can perform tasks appropriate for the brain development of a 30-month old.

It was great news!

The not so good news is that his speech development is nowhere near where it should be. He recommended intensifying speech therapy to 2x/week instead of 1x/month, which is what he had been getting. I had actually already been consulting with his therapist to increase the frequency of her visits anyway, so his assessment confirmed what we had already been suspecting.

He was positive that the speech delay was directly related to the coding episode John Paul had when he was in the hospital for his throat surgery when he was eight months old and the brain injury he suffered. Speech delay is not at all associated with TAR syndrome, and his physical makeup in no way should impact his formation of speech.  So whatever it is that is keeping JP from properly forming consonants is neurological.

His PT and speech therapist have suspected this for some time, but have been reluctant to make a positive diagnosis because of his age (up until now he was too little for us to be sure that he understood us) and his personality (he can be a stubborn little bugger and simply not do things we asked him to do because he didn’t want to).  Not to mention that my kids have all been kind of late-talkers.  Sam didn’t start talking until he was 3 (and now he never shuts up!haha)

But now that the DP has given his opinion, they theorize that JP might have something like Apraxia, which has to do with how the brain works to move the muscles of the mouth to form words.  It’s caused by injuries to the brain like the one JP suffered.

The doc and John Paul’s therapists are confident that with intense therapy he will be able to learn how to speak. In fact, now that they can pinpoint the problem and why he has a speech delay, they can treat him more effectively because there are specific strategies you follow to treat this type of disorder.

We will see Dr. Norwood again in the spring so he can see if there is any progress.  Needless to say, JP’s ability to speak will be VERY IMPORTANT for him in the future. There is a wealth of adaptive technology that he can use to his advantage – voice-activated gadgets, dictation programs, etc.  And his frustration levels will be high enough without having to add to them the frustration of not being able to express himself through speech.

So, if you have a prayer to spare you might offer it up for this intention! John Paul is such a joy, despite all of these obstacles he has had to overcome.  He makes up games with the other boys. He loves to watch little shows and thanks to LeapFrog, has started to learn letters of the alphabet. He loves music and often dances and hums along with it. Like a typical 2 year old, he throws a lot of tantrums and has become an incredible picky eater and throws food all over the floor.

But for the most part, he is a happy kid and loves life.  And life sure is a happier place with him in it!

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Gettysburg Address

In honor of the 152nd anniversary of the day Lincoln gave his historic Gettysburg Address, I thought I’d post this again for memories’ sake.  George memorized it in first grade for a Recitation Contest at school.  He said it in front of the whole school and took 2nd place in his division!

(And watching this video has made me realize that this was really the last time any of them have memorized anything this lengthy.  And also that I should take more videos to embarrass them later on.)

Shortly after the contest, we took a trip into DC and I made him do it again for me in front of the Lincoln Memorial.  It just seemed too good an opportunity to pass up, because I knew that he wouldn’t remember it all for long, and we wouldn’t be back in DC for a long time because every time we go there I want to kill my children and it takes a long time to forget how horrible the experience of getting around that city is with small children and no food and no bathrooms (downtown Mall – severely lacking in bathrooms and food).

It was a beautiful spring day. There were a ton of annoying tourists because of the cherry blossoms (we were there right at their peak in March; you can see my post about that here), and it was total chaos at the Lincoln Memorial.  It took several tries to get it where there weren’t tweenish girls dancing and mocking us in the background (or George forgetting the words).  But finally we got one! It’s still chaotic and noisy, the camera shakes a lot because Thomas kept pulling on my arm, Andrew walks in front of the camera a few times, but it just adds to the realism of the moment. Hey, the Gettysburg Address wasn’t recited in a vacuum, right?

….And then we walked back to the Metro, hungry and tired, Andrew fell into the WWII Memorial fountain, and it was all downhill from there.

Man, good times!  We need to go back soon.

Happy Birthday Thomas

I made one of these videos for Andrew when he turned seven, which seems like just last week, but apparently time has taken me by surprise yet again. It’s Thomas’ turn for a birthday video!

This is over 10 minutes long, and a LOT like Andrew’s….thanks to iMovie’s readymade templates….so no hard feelings if you pass it by. But I thought those of you know Thomas would like to see it. I have so many photos of Thomas – more than any of the other boys – thanks to my dad, who gave me a Nikon DSLR when Thomas was born.  When I was at home with my 3 boys under 5 and in constant survival mode, photography was one of the main ways I passed the time and kept from going crazy.  Long time readers of this blog know this by the ridiculous posts I used to write about playing with play dough and going for strolls in the woods.

Thomas was born after my longest and most challenging labor.  He was my neediest and most challenging baby (in a way, tougher than John Paul because his temperament was so volatile). But he owns a special little piece of my heart, secretly because he reminds me most often of me.

Those who know Thomas will also recognize lots of little inside jokes here.  I tried to do homage to his various passing obsessions: his blanket and pacifier, which he clung to well after age 3, the Dwarves from Snow White and Chocolate Man.

He’ll probably be as embarrassed as heck by this video and hold it against me forever, but then I will know I’ve done my job.

Enjoy!

Do It Yourself….Or Don’t

Some recent painting projects:

  1. This one was from back in June, inspired by Nesting Place and a can of spray paint…this little yellow chair for my sewing desk:
  2. Everything in our house, especially the little family room off of the kitchen, was brown – walls, floors, couch, bricks, etc.  So I started painting some of the furniture white, like a little side table, and this chair, which my mom bought me from an antique store for my birthday: (I wish I would have gotten a before photo, but it was brown with a brown and pink seat covering.)
  3. Next I tackled the bricks, inspired by all of the lovely photos of whitewashed bricks on Pinterest, like here and here and here.  I didn’t want to completely cover up the brick – I just wanted to lighted it up a little. Using this post as my guidline, I ordered some milk paint from this website, and set to work.   Here is the before: fireplace before
  4. The milk paint, which I watered down to the thickness of skim milk, got a lot whiter as it dried, so it was kind of hard to tell if I was applying it consistently, but in the end, i don’t think it mattered too much if it was a little whiter in some places than others.  I thought it added to the charm. After: fireplace afterIt really, REALLY brightened things up and made me feel a whole lot better about the room.  It’s really true what they say about being affected by the colors you’re surrounded with. It took a little courage to jump in and do it, mostly because I was afraid I’d hate it, but it was worth the plunge.  And it really didn’t take very long – probably a few hours at most. I painted it in little sessions over three days or so.
  5. And, here’s the “don’t”: IMG_1701Don’t try to apply latex paint directly to laminate wood.  Hello, I know that I should have known this.  My painter-husband gave me a big I Told You So look.  I was too lazy to prime, when i went to put the shelves on the paint came right off.  I’m not sure what to do with this shelf at this point; the shelves actually don’t fit anymore because of the layers of paint, and I saw a shelf at Target that was this size (already white) on sale for only $2 more than what I paid for this one at the junk store. ugh. Live and learn.  Several people have recommended chalk paint to avoid priming in the future.  But in this case, if I’m going to leave the house to go to a store to buy the chalk paint, I think I will probably just buy the white shelf instead…..

John Paul On Special Needs Spotlight

One of the best and most helpful supports I have found in the past couple of years has been the online community for special needs families. Among the most inspiring and beautiful websites is This Little Miggy Stayed Home, in which Miggy often shares stories of her daughter (nicknamed “Lamp”), who has limb differences on both her hands and her feet. Each week on Fridays she has a profile of a special needs family.

I’m honored to have been asked to talk about John Paul for this week’s spotlight.

Click here to read it. Enjoy!