Saturday, December 14, 2013

December 14, 2013

Yesterday Isaiah and I went on our monthly date-without-Evan-to-the-temple night to the Oakland temple. I'm used to bigger temples but this one was really, really big. There were at least 3 sections in just the dressing room and I had to ask for directions to get out of there. As big as the temple is, it was pretty empty inside and allowed for a quiet, intimate time inside. The temple is wonderful.


I love how when you turn off the freeway the temple is just right there in front of you. With all the lights it was even more spectacular. I love the view of the city from the temple and how you can see the Bay Bridge and over to San Francisco. I love how you can walk around the top of the temple. I love the carvings on the temple walls. This is the temple Isaiah grew up attending (since the Sacramento temple is pretty new) and he said he'll probably always think of it as his "home temple." The Timpanogos temple will always be "my" temple, but for California I think I'd prefer claiming Oakland as well--though don't get me wrong--the Sacramento temple is awesome in its own way too.

This morning we went to the Woodland Christmas Parade. I love parades. I love small town parades. We bundled Evan up in fleece pajamas with a blanket and had great seats right next to the announcers. Evan even scored us some candy...and crashed on the way home.



This evening was our ward Christmas party--a ham dinner with funeral potatoes, rolls, salad, and desserts. Oh, and SANTA of course! I'll let the video tell the story.


We're feeling pretty holly jolly, finishing up Christmas shopping, wrapping presents, delivering Christmas goodies, watching Christmas movies, drinking hot chocolate...there's just 10 days til' Christmas!

Thursday, December 12, 2013

Cast Update

The first night Evan had his casts he slept very well and even slept in the next morning. Clinic days are exhausting for the little guy so he was probably trying to recover from all the excitement. The following 4 nights? Terrible. Horrible. No good. Very bad. We tried Motrin, massage, keeping him up, singing, holding him, rocking him, feeding him... For two nights I even slept on the floor in his room--with him on top of me for part of the night--just to avoid the constant walks back and forth when he woke up crying every half hour.

I was surprised he slept so poorly because he was so good during the daytime. He learned how to crawl well and even get up on his knees without bending one of his knees. Kids are so resilient and tough!

I took his right cast off early yesterday because I noticed his foot had shifted position and I instantly became concerned. Sure enough he has pressure sores on his heel and ankle that are probably the explanation for his poor sleeping. I feel terrible and a little bit like these 5 days were a waste of time. If his foot wasn't in the right position then the casts weren't even doing their job. I wish I had noticed that sooner.



I'm sure there's some lessons we can learn from this painful experience--patience, sacrifice, etc. But I feel a bit upset at the doctors for suggesting casting so aggressively and for wrapping the cast so poorly. I feel badly for not getting a second opinion or doing more research before jumping into this. I don't think these 5 days helped straighten Evan's feet. Right now he's tighter than ever on his right foot and keeps his leg tucked up to protect it from pain. At least I know more now and at least we're done and moving on. It could've been worse. The biggest bummer is that he'll have to wait for his foot to heal before he can wear his new Nike high tops that are the cutest things I've ever seen in my life.


By the way, we had to go to several outlet stores before finding a pair of ankle-supportive shoes in a small enough size for Evan's very short but very chubby feet (size 3). Most stores don't carry shoes smaller than size 5, and those that do, like Stride Rite or Carter's, only have little booties or cute little flats. We were about ready to get some cute little girl boots so Evan should be thankful Nike carries his size. I was also just introduced to this site http://www.6pm.com/ that has some more options for us in the future.

Sunday, December 8, 2013

Holidays

Thanksgiving this year was the smallest one I've ever had. There were 6 people including Evan. No, not 6 families. Not 6 couples. Just 6 people. Isaiah's parents, brother, and then us three. It was also the warmest Thanksgiving ever. The leaves have finally changed color and occasionally I'm cold in the morning so I can finally tell it's fall, but it certainly doesn't feel like Thanksgiving or Christmas to me. I'm not holding my breath for snow. It's probably just not gonna happen. I'm having to do lots of Christmas-y things to help me feel a part of the holidays this year.

This weekend was the city creche festival. We went by the church last night to look at all of the nativity scenes that were set out. They have one room with a large manger scene for children (or adults, I guess) to dress up and be part of the nativity. Evan loves Baby Jesus. We've taught him a new trick where we ask, "Where's Jesus?" and he looks up at the picture on the wall in our family room. I think it was a little confusing to him to see so many Jesus' all around the church but I think he liked it.




On the day after Thanksgiving I invited over two of Dave's sisters and their families for a dessert party (leftover pie, of course). His cousins loved Evan. Can't blame 'em. I mean, just look at that face!




Here's a few more random pics of my little stud muffin.
For some reason Evan loves this picture of his Great-grandpa Mel. He always crawls over to it and points to Great-grandpa's face.

Following Dada's footsteps

Casts

Snowboarding sure is tough on babies...

But Evan is tough. He can handle it.

video

So actually we went to spina bifida clinic at UCSF yesterday. Evan's renal ultrasound showed beautiful, "normal" kidneys and his head ultrasound showed small ventricles. Both of those bits of news are excellent for kiddos with spina bifida. They made his visits with urology and neurosurgery basically uneventful--which, in Evan's world--is good. We also passed the visits with the social worker and dietitian without much ado. After a 2 hour drive and 3 hours of doctor visits, Evan was understandably fatigued. Nearing 5:00, in walks the physical therapist. (Cue boo's) I was initially pretty excited to meet with her and the orthopedist. I planned on telling them Evan's pt's recommendation for starting bracing so he can have more support in his ankles for standing. It was supposed to be exciting. Then the clinic's pt starts looking at his feet and saying they won't work in braces. They turn in too much (Remember Evan was born with clubbed feet and we've never done anything about it?). His feet need to be casted. I argued that they can go into "normal" positioning so he doesn't need to be casted. We discussed it back and forth. She left to find the physiatrist and came back saying, "They can do it right now. Are you ready?" I was still unsure and in denial and had a million questions running through my mind--

Can he go home in a normal car seat?
Do we have to come back every week and get them re-casted?
Can I call my husband?
Are you sure he needs casting?
Can I get a second opinion?

I decided I could at least talk to the orthopedic team and see what they have to say. I took Evan into their room and they had me lay him on a table. They started stretching his legs and opening the gauze packages. I tried to stall them but it all happened so quickly after that. 

Yes, he needs casting, but these are soft casts. 
You can take them off in 5 days. 
It's just a jump-start on re-positioning his feet and to hopefully avoid hard serial casting. 
Let us know if you have any questions. 

Blah blah blah...all the while Evan is SCREAMING on the table under my restraint and I'm thinking, "What just happened?" 

The only comfort through the whole ordeal was afterward when they told me, "He's going to be a walker. That's why we're so aggressive with straightening his feet right away. He's going to be a walker"

Anyway, the poor boy knocked out for the car ride home and didn't really discover his casts until the next morning. He can bend one knee which helps with crawling; he just drags the other leg behind. He gets frustrated that he can't get up on his knees on the couch or the table because his knees won't bend. I think he also gets more easily tired while crawling. But he's really been a trooper and I keep telling myself, "It's only 5 days." We've been practicing standing a lot. He tolerates it for a minute or so and then gets a little cranky. 



We spoil him with treats and lounge chairs and lots of snuggles. He also likes to go into his little cardboard house with his blankie and pillow and puppy and lots of books. I'm sure hoping that 5 days does the trick and we'll have some better standing in no time!

Thursday, November 21, 2013

Rock Bottom

There's supposed to be a point in your trials when they get so bad/hard that "it can only go uphill from here." Over the last year and a half I've thought I hit that point many, many times...and then it gets worse. I'm happy to announce that we must have hit rock bottom because something has finally gotten better. I've been offered a job as an after-school tutor in partnership with a local school district. I tell you--it's hard to find a part-time, after-school-hours, flexible-start-time kind of job to fit our family's schedule. This one isn't very many hours but I'm really excited to use my teaching experience and have a job again.

And I guess I've never really been at rock bottom since I've always had this lil' cutie pie with me. The biggest change I've noticed over the fast few weeks is hard to show in pictures because it's a lot of cognitive development. I'm realizing that even though Evan doesn't point to things or repeat words he actually does understand some things and can show it by looking at the object or responding to the command. The two words I know he knows for sure are "ball" and "clap." It's so fun to interact with him and feel like there is mutual understanding. He is one funny kid with a whole lot of personality.



Blowing raspberries during church is one of Evan's favorite things to do
Evan tried on cousin Maya's skinny jeans to look more like Uncle Austin


One night Evan discovered the wipes and started pulling them out one by one. Isaiah and I just started laughing and I said, "Oh no, we're at that stage." I'm excited.
Notice the guitar leg warmers...they were $3 online and work dual-y to keep his kinesio tape on and to protect his legs while he crawls around
We got this adorable sleeper (size 2T) from the Schetselaar's when Evan was a tiny preemie and I remember thinking, "What?! He's NEVER going to fit into this HUGE thing!" And now he does. :)
Independent standing--a little bit at a time. This makes me SO happy!!

Sunday, November 3, 2013

GAH!!

Before yesterday Evan never really put any weight on his legs...ever. Not even with our support or anything. He can jump in his jumperoo and kick, so we knew he had strength in his legs, but this was such a delightful surprise yesterday:


Just the first step of MANY more to come on the road to walking. SO thrilled! We rewarded him with a cookie.

Friday, November 1, 2013

Happy Halloween!

Last Halloween we showed up at my parent's door with a 3 week old baby on oxygen.

We've come so far!



Yesterday Evan and I started a play group with a few families in our town. They bring their kids over for an hour or so and the kids play with toys while the mamas chat with each other. I think Evan was glad to be the only male among 4 darling little girls. (Next week there will be another family with 3 more girls!) He certainly needs to become better at socializing with other people and being less clingy with me.

Our ward had a trunk-or-treat at night where I made a little Charlie Brown scene to compliment Evan's costume. Yes, family, you read that correctly. I made that scene. All by myself. Artistically-challenged little Jenna drew it and colored it and cut it out. I was mighty proud of myself. I even made the mal-formed oak leaves. Okay, so I'm not perfect yet. Evan trunk-or-treated to a few cars and enjoyed his first real candies--Milky Way and Laffy Taffy and Smarties. He wouldn't drink his bottle at night.

Oh, and on the note of my newly-discovered artistic talent, yes, I carved this pumpkin. All by myself. Since the parts were so detailed they shrunk like crazy and looked terrible by Halloween night but it was fun while it lasted.


Now, cousin Aisley requested more pictures of Evan so these playtime action shots are for you, Aisley!







In that last picture you can see his beautiful fat lip, a true sign of a mobile child. :)

When we moved to California Evan was 9 months old. Just a few weeks before we moved he could not sit up, roll over, hold his bottle, or crawl. I know that kiddos with spina bifida often develop these skills slower than average, but Evan seemed to be even slower than the average kid with spina bifida. BUT--in just 4 short months since then he's learned how to do all those things! He feeds himself, sits up, rolls over, climbs up on things, and just two days ago started 4-point crawling most of the time. We're so excited! We've put some large decorative pillows all over the front room. Evan loves crawling to one pillow and then collapsing on top of it, arms spread out. Then he crawls to another pillow and crashes. And then he crawls onto me and crashes. It's fun to see him be so much more autonomous. I can better tell his preferences between food, toys, and activities.

He eats everything on the floor. I usually let him eat tiny pieces of junk but I pull away bigger pieces or things I know are yucky...like the live spider he was poking around with his finger. "No, no Evan. That's yucky!"

If Evan sees his stroller, he has to get a ride. If I start walking away he throws a fit, which is slightly funny to me. I'm sure it will drive me crazy later on but for now I'm happy to know he has a working brain with opinions and a personality. He loves watching the stroller buckle get clipped into place and then he holds it like a belt buckle for the entire ride. We often walk circles around the inside of the house. Every day when Grandpa gets home he takes Evan on a stroller ride to check the mail. It's pretty much the only time Evan enjoys being with Grandpa. (Again, we need to work on the clingy-ness.)

It's funny how Evan thinks my name is "dadadadadada". I'm sure that's why he says "dada" and not "mama". He can also blow raspberries but that's about the extent of his vocabulary. Last time at speech he only made two vocalizations the entire hour. Still working on this.

We're also continuing to work on his hands. Sometimes when he crawls his hands are tucked in and sometimes they are spread out. Sometimes he can do things with just one hand but usually his other hand is squeezing or clenching to mimic the moving hand. It's so interesting to me to see this tiny human I created moving around.

Saturday, October 19, 2013

Back to SF

Today our little family of three went back to San Francisco for the first time since we left the NICU last October to finally come home after 3 unexpected months of living in the hospital there. I was both really excited and anxious about visiting my former "home."

Every year in October UCSF hosts a reunion for all kids who spent time in the intensive care nurseries there. The nurses encouraged me to go last year while Evan was still in the NICU to see that life was normal after the NICU. Sure enough it's true that children grow up and whether or not they have life-long complications they manage to move on and live normal lives. This year we were part of that "normal" and boy did it feel good. We saw a few friends and former nurses. They obviously didn't recognize Evan...


...but they did recognize me and we were able to catch up on how he's been doing over the past year. There was also food and games and costumes and pumpkins.

After the reunion we decided to make the most of our time in SF by taking Evan to the beach for the first time. The sand was a bit rocky and the water was like ice but he got the idea: Eat sand and crawl in the sand to get it up your shirt and down your diaper.

Yep, that's a handful of sand...in his mouth...and I didn't stop it.





Hey ladies, how you doin'?
We also just had to take some classic Golden Gate Bridge pictures:



And just to prove Evan isn't only obsessed with his mommy...

Isaiah gets the short end of the stick with pictures with Evan for one main reason: Isaiah takes better pictures than I do.