What I’m Into: March 2016

crocusesI briefly explored where I’ve been emotionally in my previous post, so in this one I’m just going to jump into the books, movies and more that we’ve been enjoying.

(But can I just say this real quick? YOU GUYS. I am just so unbelievably blessed. I have read all your comments and messages and though I can’t respond to them all, know that I have wept tears of joy over your kindness and generosity. I can’t believe what a wonderful community has gathered around my little family. Thank you, thank you, thank you.)

Books

I need to stop requesting books from the library that have a waiting list, because I can’t possibly read a whole book before it has to be returned when I’m only reading in five-minute snatches on the toilet. And that is just my life right now.

I read half of Better Than Before: What I Learned About Making and Breaking Habits–to Sleep More, Quit Sugar, Procrastinate Less, and Generally Build a Happier Life (Gretchen Rubin) before having to bring it back to the library. I think I liked it. I may never know.

Kids’ Picture Books

fancy nancy: a review

Fancy Nancy (Jane O’Connor) — this monumental series is perfect for little girls (ages 4+) who love all things fancy: glitter, ballgowns, and accessories. I’m surprised how much I like Fancy Nancy — she’s a funny, smart, imaginative, and relatable character with an impressive vocabulary who happens to also love glitz and glamour. Lydia is already using words like “indelible” and “furious” in her everyday language, thanks to Miss Nancy. The illustrations are great, too — they’re detailed, clever, and often very funny. We keep going back to the library for more of these books. (Fortunately, there are tons of them. We haven’t come across a bad one yet.)

actual size - review

Actual Size (Steve Jenkins) – I love Steve Jenkins’ beautiful artwork. His collage style produces unique and interesting texture. This particular book was so intriguing as it gives you a glimpse of the actual sizes of things — from the enormous atlas moth (“often mistaken for a bird”) to the tiny dwarf goby. Lydia ate up the animals facts, and we enjoyed comparing the size of the ostrich egg to the familiar chicken’s egg.

Read-Aloud Chapter Books

Toys Come Home: Being the Early Experiences of an Intelligent Stingray, a Brave Buffalo, and a Brand-New Someone Called Plastic (Emily Jenkins) — this is the delightful prequel to the fabulous Toys Go Out Trilogy. It was fun to get the story of how all the lovable toys came to live with the Little Girl, and to get a better understanding of what makes them come to life. Heartwarming, smart, and a page-turner. 5/5 stars for the whole series. (P.S. the author and illustrator put together a picture book, too. It’s good as a standalone book, but a delightful experience for those already familiar with the characters.)

Because of Winn-Dixie: review

Because of Winn-Dixie (Kate DiCamillo) — this lovely book was a little mature for my four-year-old, but she could totally understand the whole story. (There are just some darker themes in it — I had to skip the chapter wherein Miss Franny Block describes her great-grandfather’s war experience. You also hear of a child’s death and a woman’s past with alcoholism.) It’s a beautiful, sad story with an admirable young female protagonist, and it tenderly explores love, family and friendship. I would recommend it for older children, maybe 7+.

Movies

I took Lydia to see her first movie in the theatre — Zootopia. It is absolutely stunning in every way. WATCH IT WATCH IT WATCH IT. Very funny, very smart, visually delightful, and with an incredible message of inclusivity. Lydia (4) was a little (a lot) scared during a scene near the end (when a beloved character appears to be “going savage”), but otherwise, it was a great experience for both of us. (Rotten Tomatoes gave it a 99% rating!)

That’s it for now!

Linking up with Leigh Kramer.

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Where I’ve Been Lately: March 2016

(I started writing a What I’m Into post, but it quickly turned into this, so I decided to make that a separate post.)

March was full of amazing milestones with Felix. First time to the grocery story. First time to the library and the park. First time seeing dogs, chickens and cows. Amazing!

I wish I could have been filled with joy during all of these events.

Instead, I’ve been feeling nearly as much despair as I felt when we first got Felix’s life-threatening diagnosis.

We’re pretty sure he’s autistic.

I’ve had my sneaking suspicions since he was only a few weeks old, but recently one of his therapists expressed some concerns and now all of Felix’s little quirks and delays feel glaringly obvious to me.

Of course he’s autistic. Of course.

I go to sleep crying; I sleep fitfully; and I wake up with a deep sense of dread and grief. When we do go out and have fun I am constantly on the verge of tears. I’m never fully there.

I can’t think, I can’t cook. I can’t plan for the future. I am barely getting through the day.

This can’t be happening. Not again.

We haven’t gotten an official diagnosis, but I’m bracing myself for the worst. Autism runs in Ben’s family so I’m quite familiar with the symptoms. In fact, I’ve been quietly researching autism for years, half-expecting it to become relevant in my own kids eventually. I just really hoped I would never need to use it.

I’m grieving all over again. First we lost Felix’s infancy to SCID; now I’m watching my dreams for his future slowly die. Nothing is going the way I’d hoped it would.

I can feel that I have been absent from the world in the last weeks. I can’t seem to bring myself back. I still haven’t fully come back after those hellish months in the hospital.

Where have I gone?

I know in my mind everything will be okay and nothing has really changed. We love that baby so much and we want him in our lives desperately. God has been good to us.

But right now I’m just really, really, sad. I don’t know how long it will be before I am able to come back.

Maybe pray for me? And my poor family, and sweet Felix?

Update on Felix: 8 Months After Gene Therapy

Felix outside, 8 months after gene therapy

Felix is sixteen months old (i.e. one year and four months), and eight months post-gene therapy.

Last month was the first month Felix didn’t need to go in for lab work (until now, he’s had to get blood work done every month; after six months post-GT it changed to only every other month — yay!) so I didn’t have much for updates.

We haven’t gotten the results from this last blood draw yet, but we anticipate that he should be close to the normal ranges for most, if not all of, his cell counts.

We continue to hit exciting new milestones all the time!

Medical Milestone: No More Infusions!

ivigPlaying with his bravery beads and having a snack during his 3-hour IVIG infusion

Since Felix’s diagnosis at two weeks old, he has had to receive a blood product once a month called IVIG (intravenous immunoglobulins), which helps fight off certain infections. It’s a three-hour-long infusion that involves constant monitoring for any negative effects. Nurses have to take his vitals (temperature, blood pressure, oxygen saturation) constantly, and it’s very uncomfortable for him. Along with blood work and other assessments — not to mention the two-hour drive each way — our clinic visits have always been exhausting, full-day events.

This week Felix had what we expect will be his LAST IVIG ever!! His body appears to be making enough antibodies on its own so that he won’t need it anymore. Woo!

He still has his central line (which is how he received his infusion), but now that he’s off of all IV meds, he’s done with IVIG, and how blood draws are down to once every other month, we are discussing having it removed in the next few weeks (a minor surgical procedure). We can’t wait! The weekly dressing changes are always stressful, and it poses a constant infection risk, so it will be good to have that gone. (It was nice for blood work, though. Taking blood from a line is soooo much easier than with a needle.)

Isolation Milestones

Slowly, slowly, Felix is being able to engage the outside world more and more. Over the last two months he has experienced the following for the first time:

  • Touching the ground! At a year and five months, Felix touched the ground for the very first time. We even let him crawl on the grass a little. We were all so totally psyched to see our SCID baby outside! If only I could have sent a picture of it to my past self when we were in the hospital for five months straight. If only I could have known this day would come!
  • Bathing in the bathtub! Until now, we gave him sponge baths since our doctor wanted us to boil all water that touched his body (and also because he was always hooked up to an IV). He got a couple of kitchen sink baths before finally graduating to the bath tub. He freaking loves the bathtub. He goes crazy splashing around in the water and cries when it’s time to come out.Felix bath
  • Visiting grandparents! He got to see Ben’s parents’ house for the first time last week, and for Easter, he will see my parents’ house. I just wanna cry thinking about it.
  • Having friends over! We’ve had friends over on three separate occasions now. We’re limiting it to families with only single children (who are fully vaccinated and confirmed to be well), but hoping to expand that soon.

Another big step: we removed the line of tape that separated Felix’s room from the rest of the house! The whole house belongs to Felix now.

(We’d been taking him into other rooms for a while now, mostly keeping the tape on the floor so visitors would know not to cross over; but we no longer have a special area designated for Felix).

At our last visit, our doctor okayed visits to parks, libraries, malls, etc, especially if we keep him in a stroller and/or sanitized cart. ACK!! I can hardly imagine Felix out in public!!!

Baby Milestones

Felix has continued to focus on his gross motor development, perfecting his skills at cruising around furniture, pulling up, squatting, sitting, etc.

playingCausing trouble, like a proper toddler

He also decided to go back and meet an old milestone he skipped: he started crawling on his hands and knees! Our occupational therapist says this should help him with his fine motor development, as it strengthens vital muscles required for these skills.

His fine motor skills and speech are still lagging, but at least they’re moving forward a little bit — his babbling is getting more sophisticated and he’s allllmost got the pincer grasp down.

All in all, though: he had about six months of his life taken from him, when he was tethered to an IV pole and stuck in a hospital bed, and he seems to be staying about five months behind his peers in all areas. So I’d say that seems pretty okay.

(I know I said that all nonchalantly but the truth is I worry about his development every hour of every day. WORRY WORRY WORRY. Some days I’m certain he has a disability; other days I’m not sure. I constantly have to remind myself that it doesn’t matter because we will adore him no matter what.)

So that’s been the last couple of months for us!