Good exercise for Hawk's hands

It's hard to keep up with all the new things that Hawk is learning these days! He is 2 months post-spica cast, and really start to get more comfortable moving around and exploring, and slowly gaining more range of motion in his left hip. Meanwhile of course we continue to try to encourage him to use his hands in all kinds of ways so that his fingers can open up and gain more 'grip strength'.

Here are a couple of photos from last week - the therapist gave me lots of ideas for helpful activities, like ripping paper, hiding toys in socks and making him pull them out, lifting plastic containers out of the drawer, manipulating Duplos, squeezing balls, smushing play-doh, lifting and pouring cups of water... you get the idea! All sorts of fun for a little boy!

I had to record this moment (below) when all three boys were happily playing together in the upstairs playroom one morning. I think it was one of the first times that Hawk had joined the older two for playtime for an extended period, and I didn't have to monitor him every second. He carefully explored his way around (no easy task with Legos and cars everywhere), crawling or pulling up to stand. I even went back downstairs to do breakfast dishes and make another cup of coffee!

Cast off!

Hurray! The day arrived! Eleven weeks of his spica cast, and now finally Hawk has gotten it off! It was quite a day to look back and realize that this part of Hawk's physical journey has ended. Now he is ready to get stronger, regain flexibility - which he has never even had due to the fact that his hip was dislocated since birth! - learn to sit again, crawl properly, and then up and onwards from there. Meanwhile I am also very relieved to finish this stage because it has been physically tiring and emotionally challenging for me to care for him in the cast. On the whole there, the weeks went smoothly and he stayed healthy and amazingly did not get a stinky cast, as we had been warned!

Here we go! Ready to get it off!

Jim took the day off work to come, and we brought Timo and Mattias. It was their first time to visit Shriner's Hospital. They were very helpful and caring while Hawkins was getting his cast off; very inquisitive during the x-ray, and then very excited to run upstairs to the play room and explore the books, pool table, trucks, snacks and all other kinds of toys.

He cried because of the noise but was fine and happy the rest of the visit.

Yoda statue in the lobby

Bare legs again! Briefly outside at the playground before we headed home.

After we left the hospital we stopped to get late afternoon donuts (decorate your own) to celebrate, along with some falafel sandwiches and fruit salad to eat in the car on the way home. It's always fun to do something special and different from what we are able to do in small-town Sylva.

Hawk really has done amazingly well since getting his cast off. That very afternoon/evening he got down on the floor and crawled a little bit, and the next day he was off again, even though his legs are stiff and have to re-learn how to move again. He's been tender and winces when his leg gets knocked or tries to bare weight; the doctor said that could last up to 6 months. But for now he is free to learn and explore and do as he pleases! (With some gentle massage on his leg and hip muscles.) Isn't that a joy! Two days after the cast got off I saw him pull up to standing on the edge of a stair, and today he pulled up to standing on my legs while I was seated, and then crawled into my lap. This is BIG, people. You should see his proud grin. It's hard to capture on photo because the photos turn out blurry...but here are two from the day after his cast removal.

He's also rediscovering the joy of his toes!! Only on the right side so far. What a fun stage to see him learning something new every day.

the sore on his left knee is rug burn from crawling...

Here he is just before bedtime in his new rhino brace, which he will wear (for a long time yet) while sleeping. It has a molded plastic seat and foam straps over the legs and waist that secure with velcro. The point of it is to keep his hip bone at a more direct angle to the socket, which will help maintain the proper position while he grows and hopefully prevent regression. It's very lightweight and he hasn't complained about it at all. Isn't he the sweetest, most cheerful little guy?

Birthday party celebrations for Hawk

Good morning, and get ready for another day of birthday celebrations! This time at home with the whole family, plus Nonna, who was visiting for the week! (Don't worry, I'll get to that in my next post. Lots of fun times.)

opening his present from the nurses at the hospital

There she is - the wonderful, ebullient Nonna!

In the afternoon we had one friend, Levi, come over for water balloons and cake. A new friend from church brought over a huge, decorate chocolate cake for his birthday, so we pulled out a candle and were ready to go. I don't think we've ever given our kids chocolate cake on their first birthday, so that was really fun.

He mashed it up and tried a few nibbles.

Julie was there too, of course, with her son Levi!

he loves his new ball!!!!!!!

 

One more present, opened the next morning... a ride-on car with adjustable handlebars, which actually fits perfectly with his cast. Now he has something else to sit on around the house for the next 6 weeks of this cast - when he can squeeze in a turn between Timo and Mattias, that is.

Hawk is 1!

I know all mothers say this - but, can you believe it?! Our little Hawk is one year old! And quite pleased about it, I should say. He loved hearing everyone sing "happy birthday" to him.

But this was on Friday, so let's back up a bit... back to Thursday, May 3rd, his birthday.

One year ago he arrived in the early morning - quickly (25 minutes after arriving to the hospital), 11 days before his due date, in the triage room, and with no doctor present! We were so relieved and excited to meet him and give hims his name, and then that day and following days were filled with concern and confusion about his physical condition (particularly the shape of his feet, hands, and mouth, and his inability to nurse properly). There were some very long, hard, anxiety-filled days with him in those first months, but alongside we very quickly received medical help from orthopedics and therapists and lactation consultants, and slowly we began to see improvements and changes.

And now, a year later, we have a little boy who is - in almost all circumstances - cheerful, outgoing, adaptable and curious. He eats well, loves his brothers, smiles a lot, has started to crawl, and can do all kinds of things with his hands. How "appropriate" that on his birthday we would spend the day at the hospital again - this time for his spica cast change! (which required anesthesia and an arthrogram, so it was a long day; we left home at 7  AM and returned at 7:30 PM) The staff there knew it was his birthday and really made it festive, with balloons, presents, singing, a cupcake, a big sign, plus the usual children's hospital treats like a new Build-A-Bear, visits from the therapy dogs in his room, and a school choir singing in the lobby. We've really had a good experience with Shriner's Hospital so far, especially because the staff all are so pleasant and helpful. And because it is a small hospital, we already recognize nurses and are recognized by them.

leaving the house for the hospital

he was really excited about the balloons!

also very excited by the waterfall in the lobby - anything to distract while waiting for surgery

I give you: the little boy who goes 8 hours without anything to eat or drink, and doesn't cry at all while waiting!

(This time Hawk now has a half-spica cast, which only goes from belly to knees on both sides, so now he can bend both legs.)

It's been a long day. Time to head home, go to bed, and wake up again tomorrow for another birthday celebration at home!

Three weeks of the cast

Three weeks into his spica cast and Hawk is doing great! He doesn't fuss or seem bothered by it (rather, it's my back that is bearing the brunt of effort from carrying him around!), and in fact he has started crawling/scooting backward! This is a HUGE milestone for him and shows that he has really improved with his upper body strength and hand strength/flexibility (i.e. getting his hand open to spread out his fingers while crawling). He seems to really love trying to crawl and gets 'talkative' while he's doing it. He also loves being in the stroller, so I try to get him outside everyday to keep happy and vary his positions. Thankfully we aren't in the heat of summer so he isn't too hot and sweaty in the cast.

I finally figured out a sleeping arrangement that works best for him, on an incline - with a big pillow under his head and back - and a pillow under his legs. It's been extremely challenging for him to get comfortable and adjust to sleeping with his *&%*$@@! helmet. (Cue crazed, exhausted laughter) As long as his legs are supported, the cast is fine, but it is the foam helmet that has frustrated him. His night-time awakenings got worse and worse since March, up until the point when he was waking up 3-5 times a night. (Jaja can attest to that during her visit two weeks ago.)

Finally I asked his physical therapist for advice, and she suggested we take 3 nights off from the helmet and hope for a "sleep reset". I wasn't feeling too hopeful but I didn't know what else to do. And...it worked. On the 3rd night without the helmet he slept ALL night without waking or crying. Then I put the helmet back on, and now he has only woken up once a night since then (and slept through again one more time).

And when awake, he is the most cheerful, agreeable little fellow, always ready with a smile!

Recovery and first week of spica cast

Here are some pics from our first week back at home and learning to adjust to the spica cast. It was a quiet week with Timo and Mattias in Durham (and having an absolutely grand time there!!), which was helpful so we could get extra rest, get more comfortable with cast care & diaper changes, and figure out new seating for him at home and in the stroller (amended with pillows and supports). I also enjoyed taking him out for a walk every day. On Friday, one week and a day after surgery, I drove Hawk back to Greenville for an x-ray and check-in with the Dr, and he got the "clear" that the cast and position were still correct. We won't be back until the beginning of May when he gets a cast change and another x-ray.

new booster east that allows space and the sides for his legs to sit widely

We were amazed at how quickly Hawk adjusted to the cast and got over the discomfort and swelling. Within 2-3 days he was back to his normal eating habits, and by day 5 was back to his normal daily routines with naps (much shorter than when tired out from surgery, I'm sorry to say!) and play-time. He was a bit frustrated for a day or two about not being able to sit and scoot around on the floor, but now he seems to have adjusted. In fact he's able to get on hands & knees (a crawling position) and actually seems to enjoy it, or can lay down on his tummy.

He also has a special spica car seat which was loaned to us by the hospital, but I haven't taken a photo of that.

I got a new front-facing carrier, which he LOVES

One of his therapists brought this desk/chair on wheels for us to borrow; it has a padded bar that he can sit on. It's perfect! Since Mattias and Timo have come back, they've really enjoyed using it as a parking lot for cars and keep wanting to push it all around the house.

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One sunny day I really enjoyed taking Hawk on the Greenway for a 2 mile walk and picnic lunch. It was so nice to get to the end and sit on a bench with our lunch, listening to the river and not having to rush home or run after the big brothers.

Thank you all for supporting us so far! The first week is finished - approximately 9 more to go!

Hawk's hip surgery at Shriner's Hospital

Last week Hawk had his much-anticipated hip surgery to repair his dislocated left hip that he was born with. We've known since he was a few days old that he would need this surgery, and the orthopedic recommended sometime around 10-18 months. And now, he's 11 months old and the surgery is successfully finished! We are VERY thankful. The surgery was down in Greenville, SC at the Shriner's Hospitals for Children, a small hospital which specializes in orthopedics and in congenital disorders like cerebral palsy, scoliosis, AMC, and lots of others. For months we've anticipated (and at times, dreaded) this surgery; and yet, looking back just after a week, it was such a positive experience and we were not filled with anxiety or fear in those days preceding. We really appreciated the hospital staff and facility (and that's why we decided to go there), who were all kind, personable, patient, and willing to answer questions.

We arrived a day early for his pre-op appointment, and took a few pictures in the lobby to show the brothers. The same day that we left, Grandpa Hawkins fetched them and drove them back to Durham for a 10 day visit.

The morning of the surgery Hawk surprised us with how calm and cheerful he was. Despite not being able to eat or nurse for five hours, he was smiling at the nurses and didn't fuss at all until the last ten minutes. And then the anesthesiologist came and carried him in her arms off to the operating room. The procedure, open medial reduction, required an incision to his pelvis/hip area and cutting of some muscles to make room to manually replace the ball of the hip back into the socket. Afterwards the surgeon said, "It was hard...but we did it." Since his hip had never been properly situated, and because of his arthrogryposis, he was stiff. Afterwards they put him in a spica cast, from chest to ankle, with his hips angled outward to keep the proper position.

After the 3 hour surgery, he woke up and nursed (phew), and then had to have his cast refitted to make enough room in the diaper area, wrap moleskin around the edges, and put tape on top to prevent the cast from getting dirty and wet. The inside of the cast is lined with a waterproof barrier - although all of the nurses said, "Yep it's going to get stinky! Just do your best to keep it clean!" He was very groggy and in pain and unhappy about the cast adjustments!

He did not want me to put him down at all the first 24 hours after surgery, including at night. 

That afternoon was warm and sunny, so for a change we put him in one of the hospital wagons and strolled around slowly on the patio.

You can see how his feet were pretty swollen. On his left hand was the IV.

And... no pictures of the long night... or our groggy faces the next morning, BUT after the surgeon checked on him, he approved us to be released and go home that afternoon! We were pleasantly surprised because we had been told we'd stay 2-3 days, but boy was it great to be released and heading home on Good Friday afternoon. And, incredibly, by that time we could tell that Hawk was feeling a bit more alert, so it was good to get home and to our own beds.