I Will Blog Again When I Am Able to Sleep at Night Again.

I promise. I miss you guys and I miss this space.

But right now too much of my time and energy are gobbled up by sitting around in the dark with a cranky toddler at 3am.

In the meantime, know that I am savoring our gorgeous summer weather and being at home with my two healthy children.

Life is good.

summer 2016

Update on Felix: Ten Months After Gene Therapy

playing with seashell

We reached a couple of really big and exciting milestones with Felix in the last few months. What an exciting time we’re living!

No More Central Line!

central line dressing change

This was a biggie. Felix has had a central line in his chest since he was only two months old, and was on continuous IV for the first fourteen months of his life. The central line stayed in for one more blood draw, and then it took a while to organize the surgery.

Last month, at the age of seventeen months, he finally had the line removed. It had been a part of his body for almost his entire life. It feels amazing to be able to see his whole chest. (It was always covered in a big dressing. His right nipple hadn’t seen the light of day since he was a newborn.)

No more worries about the line getting yanked; no more worries about getting a fatal line infection; no more stressful weekly dressing changes. (Just imagine holding down a screaming toddler, peeling a big bandage off his chest, sterilizing the whole area, and then replacing the bandage, all while trying to maintain a completely sterile environment and making sure the line doesn’t get yanked out of his chest. Every week of his life.)

It felt so wonderful to get rid of all the medical supplies related to the central line. Get out of our house!

medical supplies

Hooray! Our boy is 100% cordless!

no more central line!

(The one downside, of course, is taking blood. He now has to get all blood taken the regular way — via needles in his skin. His last blood draw took three pokes and three adults holding him down. It’s heartbreaking, but honestly, nothing compared to a lot of the suffering he’s endured. I’ll take that over shoving a tube down his nose any day.)

No more Antibiotics!

Felix has been on antibiotics since his diagnosis at two weeks old, to protect him from infection in the absence of a working immune system. His cell counts are finally high enough that his doctors felt comfortable taking him off of them.

He’s down to only one med now — just an oral antiviral, just to make absolute sure his CMV doesn’t return. (It’s probably unnecessary but our doctors don’t want to take any chances, since he’s the only child in the trial with CMV). I cannot wait for the day we can take him off of that one, too!

And here’s the best, most exciting milestone of all:

An End to Isolation!

stones

Felix is finally allowed to do just about anything. We can take him out to friends’ houses, take him into restaurants, take him to the grocery store, take him to the zoo, etc.

IT’S SO INCREDIBLE TO SEE FELIX OUT IN THE WORLD!!

I get a thrill every time I see him laying out on the grass, looking up at the trees swaying in the wind. It fills my heart with joy to see him giggle at the sight of other kids playing in the same room as him.

At long last, Felix finally has the rich learning environment he deserves. He gets to see people of all ages talking to one another, gets to crawl around on grass and tear apart flowers with his fingers. He gets to feel different ambient temperatures and smell different aromas and move around on different textures. He can play freely in water and sink his hands into containers of dry rice and beans. He’s seen dogs and chickens and cows.

sensory table

It never gets old. Just one year ago he’d never seen a person’s face uncovered and wasn’t even allowed to see his sister. He’d only seen two rooms in his life: the hospital room in which he’d spent his first five months, and then our living room, which was scrupulously cleaned and sanitized every day.

We still have to be a little careful — he won’t be going to the church nursery or Early Years center any time soon. We’re supposed to avoid big crowds and wash everyone’s hands regularly when we’re out. But we’re pretty close to normal life now, and I hope I never take it for granted.

Oh, and there was one more milestone I almost forgot, because it was so unpleasant:

Beating His First Big Virus

Our whole family (and extended family) got hit with a nasty norovirus. We were all vomiting and experiencing severe “digestive distress” (if you catch my drift) for weeks.

Felix got it too. And he beat it.

It took him longer, of course. He was sick for almost three weeks. I pretty much held him through the whole thing.  He didn’t eat a bite of solid food the entire time, and I think he lost some weight.

BUT HE DID IT. He has enough of an immune system that he was able to overcome it.

A year ago, he would have died. This year, it just meant a really sucky couple of weeks.

Praise God!

We are so grateful to have our boy.

What I’m Into: April 2016

painting

April was emotionally taxing. (I won’t get into it here, but it involved many blessings and victories and also SO MUCH PUKE. From everyone, but especially from me. So much puke, you guys. There were illnesses, a surgery, and ongoing explorations of different therapies and treatments. Lots of good stuff, but like I said, it’s been taxing.)

The weather has mostly sucked, too.

To deal with all of these, I read a lot of books and created some art.

Here you go.

(PS: I REALLY WANT TO BLOG. I really, really do. I just have not had the time or energy. I have so many drafts of posts started that I’m itching to finish. I just . . . can’t right now. I will get back into the swing of things. I just need to not be cleaning up toddler diarrhea at 2 am every morning. It will happen.)

Books

books

Big Magic: Creative Living Beyond Fear by Elizabeth Gilbert. READ THIS BOOK, YOU GUYS. It’s spectacular. It totally lives up to the hype. This book vibrates with life. I haven’t been this excited to be a human in a long time.

Gut And Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia by Natasha Campbell-McBride. Somehow I managed to devour this dense tome in two or three days. It has given me so much hope. I am anxious to start Felix on this dietary program as soon as possible. His poor gut has been completely massacred during his short time on earth so far. I’ve heard some really inspiring testimonials that fill me with hope for healing.

Move Your DNA: Restore Your Health Through Natural Movement by Katie Bowman. I’ve been obsessed with Bowman’s blog and podcast the last few months and finally decided to buy the book. It’s fantastic. Bowman is majestically articulate and engaging, able to explain complex and foreign concepts in easy-to-understand terms. She’s funny and memorable, too. And her ideas are revolutionary and exciting. Some of the most interesting highlights for me have been:

  • the difference between exercise and movement (and how we need more of the latter in our lives)
  • the difference between fitness and health (“fit” people can be just as susceptible to illness and injury as anyone)
  • her radical suggestion that you don’t have to add exercise to your busy schedule. Just change the ways you move in your everyday life to become stronger, more capable and less prone to injury. In a word, healthier.

Children’s Read-Aloud Books

 

The Trumpet of the Swan by E. B. White. I think I’m alone here but I thought this book (by the author of Charlotte’s Web) was stupid. (Lydia liked it well enough. I guess that’s what’s important).  It starts like a realistic nature story, but quickly becomes an absurd tale of a swan who goes to (human) school and learns to read, write, and play the trumpet to make up for the fact that he has no voice. And in the end he “donates” some of his children to a zoo to pay off a debt. WHAAAAAAT. Also, it’s so long it took us a whole month to finish.

Picture Books

children's books - april

Imogene’s Antlers by David Small. Lydia’s favourite this month. (She’s four.) She weirdly loves stories about children who inexplicably wake up with bizarre changes to their bodies. (Others in this category include George Shrinks and A Bad Case of Stripes.)

Snow White by Paul Heins and Trina Schart Hyman. Absolutely captivating illustrations to a powerful classic. (Read ahead of time, though, and be prepared to maybe change the words to the very last page, wherein the evil queen — without any foreshadowing — is given a pair of red-hot iron shoes she must wear as she dances to her death. ?! The punishment is as morbid and arbitrary as it is unexpected.)

The Wild Swans by Amy Ehrlich and Susan Jeffers. The most beautiful illustrations you will ever see. A very interesting fairy tale, too, which has the fortune of never having been Disneyfied. (Warning: this and the above stories are very anti-feminist, with kings who decide to marry the beautiful maidens with almost no indication of any volition on the woman’s part. I still liked ’em.)

Adelita: A Mexican Cinderella Story by Tomie dePaulo. A familiar old tale gets new life in this Mexican setting. Everything about it is lovely. There’s lots of Spanish mixed in which adds to the atmosphere but was tricky to read out loud since I don’t know the language at all.

* * *

We didn’t really watch any TV or movies this month.

And that’s what I’ve been into!

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