Business as Usual

Ayden's birthday present from Bryan and me was a wagon... big enough for two, Ayden and Jude!

Sunny Day

The month of April was busy for our family. Ayden had a lot of birthday and a lot of attention. Now that things are settling back to our everyday routines, Ayden has done a bit of boycotting. He won't nap. He won't sleep at night. He won't stop whining. He can make himself so angry that he throws up. (For all our nursing friends: No, he doesn't have a fever; his sats and heart rate are fine; he doesn't have increased work of breathing; his coloring hasn't changed; he's warm and well-perfused; his tummy is not distended; he doesn't tug at his ears.)

I love splashing in the tub!

Bryan and I have discussed a number of things to try to help our family get back into the swing of everyday living. Among the things we discussed was removing his morning nap. His body needs and wants the morning nap, but his mind gets in the way, and he fights sleep. If we don't insist on the morning nap, Ayden still fights sleep; he just does it while he plays, rather than while being rocked or placed in his crib.  (This stubborn behavior is nothing new for Ayden!) His afternoon nap has improved since the removal of his morning nap, so I'm hoping that he'll adopt the new routine and be in a better overall mood.

We have also discussed removing his midnight feed. (Ayden gets fed five times a day, every four hours, beginning at 8AM.) However, if we remove his midnight feed, he has to get the calories somehow, so that means either increasing his volume or his calories for the other feeds. Volume increase is out of the question. He's at 185ml (~6.3 ounces) per feed right now. An increase in calories would mean jumping from 24 calorie formula to 30 calorie formula, and we don't know how we feel about Ayden returning to 30 calories. And then there's the problem of his being on so many diuretics; if we take off volume, we would probably have to replace it with water somehow, so he wouldn't become dehydrated. We don't know the answer, but we feel certain something needs to happen, so we all can get some sleep!

There are other topics on the table as well, such as medication changes... honestly, though, a lot of issues would be solved if our son would EAT, which takes me to the next topic...

I DO eat, Mama!

FEEDING THERAPY (once a week)
Ayden hates feeding therapy. In the first few minutes, he does some showing off, but it doesn't take long for him to start reaching for me to be removed from the chair. A lot of Ayden's angst comes from sitting in the chair. (He reacts similarly to the carseat. Being strapped into anything makes him mad.) At therapy this week we are going to try some new methods to see if we can make Ayden more comfortable with his situation.

At home Ayden has been making progress with eating/drinking, albeit SLOW. A list of likes: BBQ sauce (like his daddy!), chocolate, water, mango & pear baby food, cheese dip (yes, he's my child!), sweet tea. A list of dislikes: ketchup, honey mustard, peach, apricot, & banana baby food. He seems most willing to allow me to put food or liquid to his mouth if it's on my finger. Coming at his face with utensils or food items just makes him mad. Once food is to his mouth, he does fine; he licks his lips, etc. He does great with cookie or cracker crumbs (he used to gag on them but not anymore!), but getting them to his mouth is an ordeal. That leads me to...

OCCUPATIONAL THERAPY (twice a month)
Ayden was recently evaluated for occupational therapy (fine motor skills). He did quite well, scoring only slightly below average. There was some uncertainty as to whether or not Ayden would even qualify for OT, but I requested the therapy on the basis that he was not a feeder and that we needed OT help for getting Ayden to feed himself. My hope is that if Ayden can feed himself, eating will seem like his idea rather than something we force on him. An occupational therapist will help him use a spoon and cup and will teach him to use his thumb and forefinger (pincer grasp) to pick up smaller foods.

PHYSICAL THERAPY (once a week)
Ugh. Physical therapy has been a torture for Ayden, his therapist, and me. Ayden seems to be happy just being able to sit up. Any indication from us that Ayden should work toward being mobile just makes him mad. He is capable and has enough strength to crawl (he can hold the crawl position beautifully), but doing the work to learn how is not on his agenda. Until he decides that learning how isn't so bad, physical therapy is a screaming, nose running, throwing up experience. (Did I mention that he has a temper?!?!)

PLAYING
(when he isn't going to therapy, doing therapy homework, sleeping, or eating)
Playing with Ayden is much more fun now that he sits up so well. My favorite activity to do with Ayden is to play ball. I roll or bounce the ball to him, and he holds it, eats it, and/or lies on it before pushing it back to me. I've also recently enjoyed watching him learn how to remove wooden puzzle pieces or push his WheelPals down their ramps. He has been learning "in" and "out" with his finger puppet bugs and bug house. He loves to spin wheels, hit his drum, push buttons on his cell phones, shake his maracas, knock down blocks, fling around paper cards, read books, bang objects together, rip apart Kleenex, and play Hide & Seek and Where's Ayden?. He dances to Lemonade Mouth, Choo Choo Soul, Dance-a-Lot Robot, Disney pirate band (Sharky & Bones), Imagination Movers, or Selena Gomez, and he enjoys watching Phineas and Ferb, Mickey Mouse Clubhouse, Chuggington, Babar and the Adventures of Badou, and Handy Manny.

TALKING (mostly in the late afternoon or evening)
"Dada" remains Ayden's favorite word. I've only heard him say "Mama" twice in the past few weeks. Bryan has been teaching him to say "Ayden," which Ayden says fairly well. Ayden has also learned to laugh. He laughs when we laugh, but he also laughs on his own. Sometimes he gets to laughing so hard that he starts to cough. Recently, Ayden has been handing me various objects and toys, and he says "thank you" when I say "thank you." His version of "thank you" has the same consonants as "Dada" but with the inflection of "thank you." Sometimes he gets close to the "th" sound. Playing this game with Ayden is super cute, even if he doesn't use the phrase in quite the correct context (or even know what it means).

Speaking of "thank you," we want to extend our appreciation to Fruitland Intermediate School for their generous gift to our family. We also want to thank Gran for adding on to the quilt she made for Ayden. In addition, we want to express our gratitude to Captain Brandy for the puppy quilt she made Ayden while on duty in Iraq. Brandy, you are in our thoughts and prayers!

PEDIATRICIAN & CARDIOLOGIST
On April 29th, Ayden had his one year pediatrician check up, complete with vaccinations. He passed his hearing test. He weighed 18 pounds, 13 ounces, which is 3rd- 5th percentile. His height was 28.75 inches, which is 20th-25th percentile. His growth was sufficient; however, the pediatrician wants to see him in a month for another weight check. She is concerned that his current formula regiment won't be able to keep up with his "high energy" demands (doctor's words).

This week we are removing one diuretic completely. Next week he will have an x-ray taken and then report to cardiology. As always, we are prayerful that his chest doesn't build up fluid.

MOTHER'S DAY

We spent Mother's Day afternoon at a cookout with Elise, Phil, Jeff (Phil's cousin), Max, and Alex. Alex spent a lot of time trying to get a bubble on his bubble wand, so Ayden could reach out and pop it. Max pushed Ayden in his car several times around the cul-de-sac. We tried to give Ayden a cherry freeze pop, but he wasn't thrilled with the idea, no matter how hot it was outside!

When we returned home, we let Ayden play with his very first markers. He made his first marks in green, my favorite color. He made dots, and his artwork hangs on our refrigerator. Honestly, he enjoyed playing with the paper the most! Big surprise!

At this time last year Bryan and I were living in the Nashville Ronald McDonald House. I think about all that has transpired for our family since that time, and I am humbly grateful and blessed. Ayden is an awesome son, "fearfully and wonderfully made," a joy to love and to mother. I love you, Ayden!