Eating Rehab

So, we have had a great day for Simon and his eating. He was weighed today and has gained 13 oz. in the last 2 weeks so he is now 17 pounds 15 ounces. The other good news is that he has drank about an ounce of fresh milk mixed with cereal by a cup today. He needs his milk thickened but he is doing really well as swallowing it. :) Let's hope he continues to progress and that his swallow continues to improve.

Finally growing, hopefully!

Well, it was worth a try and it worked! We took away Simon's first feed and moved it to the end of the day, at Midnight and he hasn't thrown up since. Apparently he had too many hormones and stuff in the morning when he first woke up that made him nauseaus when we fed him. The only bad part is that now I have to get up at Midnight to feed him. He sleeps threw it though, which is a blessing.

He has not only stopped throwing up but we were also able to increase his volume and caloric intake every day. He is at 30k/cal per ounce now and up to 130ml's every feeding and holding it all down. I expect a good weight gain when we weigh in next week. :)

New Feeding Plan

Well, I don't feel like the plan that GI posed today makes much sense but we will give anything a try. It seems like Simon's worst feed of the day is his first feed at 6am. They proposed that he is having a surge of hormones that early and it makes him nauseaus. They recommend that we skip that first feed and move it to the end. So instead of starting at 6am and ending at 9pm, we will start at 9am and end at 12am. This means one more time getting up in the night but if it helps him gain weight, I will give it a whirl. He has lost weight again so it's very important that we figure something out. Our goal is to help him gain weight without having him hooked up to his feeding tube all the time. We want him to maintain bolus feeds so that he has times off the pump to continue to work on his development in other areas, such as mobility. I don't think this plan will work but let's give it a shot. :)

Carrots

Ok, Simon ate 1/4 of a jar of baby food today, carrots to be exact. At two different times, he ate several spoonful of carrots and actually swallowed it. This may seem small but this is HUGE for Simon. It's the most he has ever been able to eat in one day. I hope this is a step forward and as he eats more, we need to pray that his digestive system can handle the foods.

Insurance

Well' it has only taken 2 months and 2 weeks but I finally got the insurance issue resolved. It has taken this long to get Simon enrolled in Tricare and his name changed on his MA. It's a little thing but it means a lot to us to be able to call the pharmacy and use his new name. :)

Gotta get a new plan

Simon is currently fed through a g-tube straight into his stomach because he has a weak swallow and occasionally swallows down the wrong tube, as well. Well, his feeds haven't been and still aren't going well. Even though he had the Nissen to stop him from throwing up he is now throwing up through the Nissen. It is taking him one to two hours to keep just over 4 ounces down, 6 times a day. He is not gaining weight and we are having to consider other options. We will meet with his GI doctor on Tuesday to talk about some options. The option that is being discussed, so far, is to place a g/j-tube. The g-tube goes into his stomach and the j-tube goes into his small intestine. This would mean he would be hooked up to his tube and eating more often though, which may impede on his other developmental issues and milestones.

We'll keep you posted on what we decide.

Catch up

David and I have been fortunate enough to adopt 2 amazing children together. Gracelynn, who is now 4 and Simon, who is now 1. Both of these two children have medical issues that making caring for them a challenge.
When Gracelynn came to us at 5 months old, she had suffered severe head injuries which has left her with seizures and motor functioning issues. Her motor functioning has led to delays in both fine and gross motor skills. She frequents therapy for OT and PT, as well as her neurologist for neuro monitoring and her pediatrician for growth and development concerns.
Simon came to us at 3 months old as a failure to thrive baby weighing only 7 pounds and having many medical issues. He was born with cleft lip and pallet and a genetic disorder that he is writing the book for, since no one else has his genetic abnormalities. After months of fighting with him to eat orally and struggles to gain weight, he received a g-tube for feeding. At the same time, he had a Nissen (sp?) which wrapped his stomach around his esophagus, to keep him from throwing up his food, in hopes he would be able to gain weight, between the two procedures. Simon is also very delayed developmentally in every area (speech, fine motor, and gross motor). He receives OT, PT, speech, and eating therapy every week. He has had 9 surgeries so far and several hospitalizations for failure to thrive.
Currently, we are running to 5 therapies a week' between the two kids and receiving one therapy in-home. Simon is being monitored by 12 doctors who deal with his growth, asthma, genetics, cleft pallet, audiology, eyes, allergies, and other typical baby stuff. Gracie is seeing a therapist to deal with adoption and the loss of her birth family as well, right now. She was just tested for ADD and that was negative but that's when we were informed of her motor delays and neurological concerns.
We are blessed to have these gifts from God but overwhelmed at times with their needs. We need and desire the support of many. Prayer goes a long way but often physical help is also required. Our current struggles seem to be to find a person that can watch our children in our home, who can deal with their needs.