August had several procedures done yesterday at OHSU. He had a cleft palette repaired. His palette had not formed correctly when he was born and was causing problems with speech, eating, and hearing. He also had his frenulum snipped because his tongue was not allowing him to move food to the back of his throat. The last procedure he had done was to have ear tubes put in. This will allow his ears to drain better and hopefully improve his hearing.
The surgery went OK, but there was an old clot at the back of his nose that started bleeding which caused some stress with us and the doctors until the cause was found. He and Janet had a restless night at the hospital but we are all home now.
August seems to be his old self, lots of energy to explore and play. We are hoping to keep on top of his pain and wishing for a speedy recovery.
Janet and I are at the hospital while August undergoes a three hour hearing test. The test is to try and narrow down where his hearing loss is located. Depending on the results this impairment might be correctable.
Unfortunately, he has to be sedated for this test. On the plus side, Janet was able to replace his “button” while he was asleep, before they did the hearing test. His button is the tube into his stomach through which he is fed. Janet did it very smoothly, having seen it done a couple times before, and the nurses all complimented her.
She left a couple minutes ago to go to Porter’s school for a special presentation. Porter has been helping to build a Yellow Submarine at his school and they’ve created lots of learning activities around it. After showing Janet what his been doing they’ll come back to hospital to pick August and I up.
August has been doing well lately, despite a cold. He’s been crawling around and has braces to support his ankles to help him learn to walk. He pulls himself up on us and furniture and has even made it up a couple of steps.
He’s been nibbling on some food but progress has been slow for learning to eat. His favorite thing to eat are cheese puffs.
Janet, Porter, and I have been learning and using sign language, and August really likes it when we sign. He has learned the sign for “more”, which he does to us, but where not sure he knows what it means.
August is doing well these days. He is currently 18 pounds and is crawling around, pulling himself up on things. He has been fitted for orthepedic inserts which will help him as he learns to walk. We also have a small walker which he slowly pushes around.
He is also very communicative making lots of screeches, clicks, kissing, and mama sounds.
Below is a record of August’s current meal recipe.
Base Recipe makes 750 mls:
14 oz. milk (pref. unpasturized goat milk)
2 Tbl. oatmeal or rice cereal
3 oz. vegetable (raw or uncooked)
4 oz. fruit or fruit juice (non-acidic)
1/4 tsp. salt
4 Tbl. oil or butter
2 oz. protein (meat, egg, 1/4 cup cottage cheese, 1/2 cup lentils)
4 Tbl. molasses
Add coconut water, milk, water or tea if necessary to make 900 ml total
Mix ingredients with flax and harder substances at the bottom of the blender.
Liquify ingredients.
Warm and load into pump.
Yum.
Current vitamins per day:
1 drop vitamin K
1 tsp. multi-vitamin syrup
Current meds per day:
2 ml. zantac
2 tsp. enulose syrup
His meal schedule and rate:
160 ml at 81 ml/hr, twice a day with a least a couple hours in between
600 ml at 65 ml/hr, overnight
Had a picnic recently out back and shot the video below of August wrestling with Porter. A brief update on August: he is going in to have his G-tube replaced. The old one was getting uncomfortable and it was time to change it. A fairly simple operation. He is also recovering from an ear infection, so he has been keeping down most of his feeds lately.
August is a year and a half now and is crawling all over the place and now pulling up to stand. He’ll try it on anything; furniture, curtains, someone’s leg, the swing, his brother, anything he can get his hands on, even if it moves. He had a really intense appointment with Dr. Judy. She did some lower spine adjustments, hip release, upper rib cage release. He sobbed and sputtered and coughed the nastiest cough I’ve ever heard. I kept waiting for the bodily fluid expulsion, but it never came. It sounded like he was bringing up massive amounts of liquid, but they never came out. Well, something came out the other end, but where did the snot go? Hopefully he swallowed it and didn’t aspirate. I do not want a repeat performance of last winter’s run to the emergency room and 3 week stint in the ICU. So, he’s growing, he’s moving, he’s still not eating much, but the other stuff is really cool to see. We are very, very proud of him.
I’m also pretty excited about our vegetable garden. This year we are growing:
Tomatoes:
Matt’s Wild Cherry heirloom (so good and sugary)
La Roma Gold (sadly, blossom rot)
Early Girl Blush (again, the rot)
Cherokee Purple heirloom (will turn dusty pink to dark purple when ripe. cool.)
Sun Gold (yum, like tangerines!)
Italian Eggplant, Cucumber, Honeydew Melon, Watermelon (planted from seed by Porter), Rainbow Swiss Chard, Zuchinni, Giant Pumpkins, Romaine Lettuce, Red Leaf Lettuce, Bibb Lettuce, Basil.
I’ve got someone from United Healthcare in the phone and I’m appealing some claims from August’s last emergency room visit. They list the services as “*Remark Code B8: According To Your Plan, Your Benefits Are Lower Because Your Care Was Coordinated By A Non-network Physician Or Other Health Care Professional.” This has us paying more than we should because it was an emergency room visit at an in network hospital. We didn’t have any choice in our doctors because of the urgency of the visit so hopefully we can get this straightened out and not have to pay as much out of pocket.
All in all, I’m glad I’ve got insurance. I can’t imagine paying for all these bills without it. Actually, I can image it: people selling their cars and houses, getting into hock with credit card companies to pay for services which saved their life or a family members life. What is wrong with that scenario?
Friends joke about moving to Canada but I wonder if their system of socialized medicine if better. Need to do more reading on that. Might have to brave the colder climate for a better quality of life, not only for my family but the all the citizens in general.
Well, they escalated my request to the senior quick response representative and will contact me within 24-48 hours to let me know they have changed the status of the claims. Sounds vaugely like what they said last time on the phone.
July 29 update: No call within the last week. What a surprise. Barbara from the Rapid Resolution department says she will call by Thursday, this time. Yea, right.
