Summer Fun!

Feeding Update: Ambrose

Last we posted about Ambrose, he had just discharged from the hospital after having his G tube replaced by a G/J tube. He did not tolerate formula any better with that configuration. He continued to vomit continually, the only difference was that he couldn't bring anything up except mucous and foam since we were bypassing his stomach with his feeds. So after a week and a half of that misery, we went back to the goat's milk and the G tube.
We let his GI specialist know that we were not interested in trying any more commercial formulas. We realize that a full goat's milk diet is not appropriate for a child his age either, and would like to pursue more creative, if not alternative solutions.
At the doctor's suggestion, and with the help of Marsha Dunn Klein's Homemade Blended Formula Handbook, we've introduced Ambrose to a blended foods diet. The trickiest part is getting as many calories into as little volume as possible. His little tummy can't tolerate large volumes yet and since the homemade formula is quite thick and will clog the tubing in the feeding pump, it has to be manually pushed through the G-tube with a syringe. This requires quite a bit of attention because right now he's getting a 1-ounce bolus every half hour, in a few days maybe 2 ounces every hour, then 4 every other hour, and so forth until he can tolerate meals again. At night, so Mom can sleep, he gets goat's milk by drip feed, which is half his volume and about 35% of his calories.
The GI doctor doesn't prefer homemade formula to the commercial, and frankly neither do we, but we have to do what we have to do. At least she is open to it and supporting us in this. We had an appointment Monday, but the NP had to fill in for the doctor. This was very frustrating and a complete waste of our time. She wondered aloud with a hint of disdain why we would go to all the trouble of making our own formula when there are dozens of commercial formulas out there. She then went on to relate to me an ordeal she underwent to nurse a puppy to good health after the vet told her to let him die - now he's a show dog! If only Ambrose were canine I might be able to get her to help us.
Ambrose is still receiving feeding therapy twice a week - once as speech therapy and again as occupational therapy. He has showed very poor progress with oral feeds, however, he's still traumatized from all the vomiting he endured this Spring. He won't let you near him with a spoon, but will help himself to some Cheetos or pretzel rods, so long as he's the one putting it in his mouth.
He also gets two visits from a developmental specialist every week and his back and legs are getting stronger. If you'll remember he was in a body cast for 12 weeks last Fall, during which time Charlie learned to roll over, sit up and crawl. Ambrose is now doing all those things plus kneeling, pulling up to standing, and climbing stairs.

Charlie finally got the nerve to walk. He's had the skills for some time now, but lacked the confidence. Of course, it may have had something to do with his enormous head. It's in the 90th percentile for 15 month olds, and his weight and height are 3%and 28% respectively. Ambrose is under 10% for weight, 17% for head circumference and still on the preemie chart for weight. He is around 16 lbs and Charlie about 19.
Ambrose is the happiest of the four and Charlie is starting to rival Josef's appetite, they split a Grand Slam breakfast at Denny's Saturday and Charlie finished his half.

Happy Father's Day!

The Iker boys love their Daddy! They watch out the window for him to come home, and wrestle him to the carpet the moment he enters the door. John Paul has taken to dressing like him; yesterday he said to me, "Look, Mommy, I'm wearing my dark shoes and belt and a collared shirt and pants. Do I look like Daddy when he goes to work? I even have my scapular on like Daddy." He's the best Daddy I could ever ask for for my kids and I'm proud that they want to be like him. I thank God for him every day.

Thanks to everyone who was praying for us during and after Myra's passing. We appreciate all the kind words and outpouring of love. The funeral services were very nice and Myra was laid to rest in the St. Timothy Mausoleum at Queen of Heaven Cemetery in Mesa.

Myra Iker 1/22/1947 - 05/26/2010

Memorial Services

There will be a viewing at Tempe Mortuary on Friday evening 6-8pm, Rosary at 7pm.
The Funeral Mass will be Saturday at 11am at Our Lady of Mount Carmel Catholic Church in Tempe.
Myra will be interred at Queen of Heaven Catholic Cemetery next week.
In lieu of flowers, donations may be made to Maggie's Place.
And the Embassy Suites in Tempe is providing bereavement rate rooms.

Requiescat In Pace

My mother passed away this afternoon after a battle with Cancer. She was greatly loved by all. We will miss her tremendously, but know that she is resting peacefully and enjoying her heavenly reward.

Funeral arrangements will be announced shortly. There will be a viewing at Tempe Mortuary on Friday evening and the Funeral Mass will be Saturday morning at Our Lady of Mount Carmel Catholic Church in Tempe. She will be interred at Queen of Heaven Catholic Cemetery next week.

Thank you for all the prayers, sacrifices, concern, friendships, and love you've all given to us. Thanks also for all those who cared deeply for my mom. She had wonderful friendships that encouraged her through her toughest times this year.

Ryan

Home on Bedrest

I was discharged Monday 5/17 and have not lost any more water since the first rupture on 5/13. It is possible that the tear in the membrane sealed up, or it could just be that the Tiny Iker has himself pressed against the opening, plugging the leak. Either way, it's a good sign.

The rest of the boys are enjoying having Mommy home and on a mattress on the living room floor. What is it about kids and dogs that they have to attack and wrestle you when you get low?

Ryan is managing to hold down the fort, but we are relieved to have hired a summer nanny.

Thanks again for all your prayers and meals and visits.
-Gina