Sunday, February 24, 2013

If You're Happy and you Know it

Sometimes Evan is happy. He smiles at all the ladies at church and at all the nurses. He's interested in everything around him and lets you manipulate his body however you want. He coos and screams excited screams and giggles and laughs. And we love him so much!


Daddy made a play place out of PVC pipe to hang Evan's toys so we can work on hand coordination

Watching Cars at the ward party
Sometimes Evan is not happy. He pouts his lip at me. He closes his eyes and screams angry screams and wails. He doesn't want to eat or sleep or do his physical therapy. And we still love him so much! This is called Tough Love.

I don't WANT to practice holding up my head!

Why can't you just hold me?

SB Clinic

Evan had his routine Spina Bifida Clinic at Primary Children's on Friday. After he gets all his measurements done we stay in a room and all the doctors rotate around to us.

Physical Therapy: Evan's head control is improving immensely since our last visit and since his shunt placement. I pointed out how Evan tends to fist his hands and keep his arms tight around his face like a newborn. We worked on a rolling technique that straightens and strengthens his arms to encourage him out of that "W" pattern.

Neurosurgery: Evan's three shunt wounds have all healed nicely. His fontanelle is not bulging. His behavior is normal so the shunt seems to be working. Yay!

Neurology: Dr. Kerr checked Evan's arm tone and overall behavior to evaluate if his tight fists seem to be caused by a neurological condition. As I suspected, she thinks he's fine. I (in my professional mother opinion) think it's just a slight developmental delay that he'll soon outgrow.

Urology: We still don't cath Evan and he hasn't had any UTI's so we're not going to change anything in that area. We will attempt another bladder study in June along with a renal ultrasound (kidneys) to make sure everything is healthy down there.

Dietetics: Evan is progressing nicely on his growth charts at a healthy 17 1/2 pounds. We will slowly transition him to formula to make sure his body can digest it well. So far he doesn't seem to notice the difference between the formula and breast milk bottles.

Occupational Therapy: We continued to work on Evan's arms and hands. Evan practiced holding his head up while he is on his tummy. Usually this looks like push-ups because his head only stays up for a second or so. I knew he liked the OT when he showed off by holding his head up for about 15 seconds. She was impressed. Evan is such a ladies man.

Friday, February 15, 2013

February 15, 2013

Looking back through our pictures I'm surprised by the oxygen on Evan's face. I mean, I obviously knew he had oxygen on and I obviously knew we trailed tubes everywhere we went, but I guess I didn't see the oxygen. It's strange to think that it was really on his face for 3 months. Here's his oxygen-free face.

Loving his baby bean bag
Most of the time I call Evan "Bug." It was quite fitting, then, when Santa gave Evan a bug hand-puppet. (3 body parts and 8 legs--spider or insect?). Evan must have some sort of connection with Buggy, as Buggy seems to bring out the best of our little man's vocabulary. Of course Evan gets his chatterbox gene from his Daddy. And yes, I realize this video will mostly only be interesting to myself, Isaiah, and Evan's grandmas.

video

We received an itemized bill from UCSF yesterday and, true to the nurses' words, Evan is a million dollar baby (and some). We get frustrated with the bills we have to pay but then we realize how fortunate we are when we see: "Total Expenses: $690,754.61 You Owe: $0.00", "Total Expenses: $466,102.79 You Owe: $0.00." Sorry, America, for your jacked-up insurance premiums. And thank you.

Evan and I send Daddy pictures or videos while he's at work. They contain the unprofessional, iPad quality pictures of our daily monotony (which I honestly love, I might add). This video shows our most recent attempt to get Evan to play with his toys. To say Evan reaches for toys is really an exaggeration of him flailing his arms and just happening to hit the toy in front of his face. But he does kick his legs like a rockstar. He also sunsets his eyes pretty well which makes him look slightly deranged at times. You'll notice it in the video and the picture below. It probably has to do with the pressure in his brain and we should probably ask about it at our next doctor visit.

video 
 
Notice the white above the iris? That is sunsetting.
Ok, so he's not sunsetting in this picture. He just looks crazy anyway.
Speaking of doctor visits, we didn't have ANY this week, which may be the first time that's happened since...well...EVER.

Since I send Isaiah pictures while he's at work, sometimes he sends me pictures while I'm at work. Here's what I got yesterday with the message "Daddy is sooo mean".

Friday, February 8, 2013

Goodbye Oxygen!

BEST. NEWS. EVER. I hardly knew what to say when the nurse called and said the results were normal. Normal? What does that mean? Well in this case it means no more oxygen!

Unfortunately the bladder study didn't go so well, but not because Evan's bladder looked bad. The doctor actually didn't get a chance to see Evan's bladder because once the catheter went inside Evan turned into Mr. Grumpy Pants who turned into Mr. Screamy Pants. It was not a pretty sight in the doctor's office. Nothing consoled him until the catheter was pulled out and he was in my arms. Then in an instant the tears stopped. We'll put off the study til next month and still not cath him for now.

New Record

Evan went to bed last night a little before 10:30. It's now 7:30 am and he's still sleeping! Woot woot! (Did I mention I have the best baby ever?) I think his longer sleeping at night nowadays comes from:

a) maturity and developing habits
b) massage therapy
c) staying up late watching BYU basketball games with daddy

Yesterday we finished the last of 3 sessions with a massage therapist from Evan's Early Intervention Program. When Evan is in a good mood he LOVES his massage time. We use food grade coconut oil so it's safe if he chooses to eat his hands afterwards. There are so many benefits to infant massage including promoting body awareness, improved sleep patterns, reducing stress hormones, relieving discomfort of gas, colic and constipation, and helping baby feel loved. We got into the massage program initially because I mentioned to our Occupational Therapist how Evan goes crazy every time we change his diaper. She suggested massage as a way to familiarize him with touch in a positive way so diaper changes won't be so scary. And now Evan loves diaper changes! Or at least he doesn't scream during them which is a large improvement. I kinda want to teach an infant massage class to other mothers because I feel really lucky that we're in a program where it was introduced to us.

On that note, it's actually really cool to be involved in an Early Intervention Program as a new mommy. (and...the screaming child has awoken. No fear, I can type one-handed while he eats) We have in-home nurses and therapists who give advice and provide help for all areas of Evan's development. I'm sure I could have survived on my own but I'm so glad I've had their guidance. We're especially looking forward to Aquatic Therapy which he can start when he's 6 months old.

Later today we have a bladder study at Primary Children's. Basically, they stick a small catheter into Evan's bladder and inject some blue-dyed fluid. They use an x-ray machine during the whole thing to see if the bladder and sphincter muscles work as they should when the bladder gets full and to see if there's any reflux into his kidneys. When we did this study before in San Francisco we were told everything looked perfect and we didn't need to cath Evan. We're hoping for the same results this time though I tend to be pessimistic and assume something will go wrong. That way I can be pleasantly surprised if it's good news. We're still waiting for our oxygen results too. I'm not getting my hopes up there either.

Friday, February 1, 2013

O2

Feb 2, 2013 - Tonight we're going to do a second oxygen test. We've been studying for 3 months now so I hope Evan passes!
Feb 4, 2013 - Superbowl 2013, San Francisco 49er's vs. Baltimore Ravens
How cool would it be if the Giants won the the World Series and the 49er's won the Superbowl in the same season Evan was born there?! Talk about a lucky baby! But seriously--Evan is really lucky. When we take Evan shopping we always get the best parking spot and the foods I need to buy are all on sale. When we went to D.I. with Evan looking for 3 specific books, they were all there!

Other things we've enjoyed with Evan?
  • Massage therapy
  • Sleep
  • "New parent paparazzi" photo shoots
  • Not having to buy diapers yet