Good reports again

Simon had a long day at Riley's but the initial reports are good. His heart is doing fine. They are increasing some meds only because his body-size is increasing. Apparently they want to keep these meds going for 6 months before considering reductions.

The sleep study went well but the results will take a while. Summer said it was a long study (3 hours) with lots of wires and such. I think she is glad to be over that one.

Again, we thank you for praying. Thanksgiving was very special this year.

More Tests

Dean, Summer and Simon are traveling down to Indy tonight. Tomorrow Simon has a sleep test and a visit with the Cardiologist.

Since his last visit, they have been able to take Simon off the NG feeding tube. It is so wonderful to see him tube-less!

We are still waiting on some metabolic tests for possible genetic causes of Simon's problems. Simon has been on a heart monitor since he returned home from the hospital. The alarm sounded once (briefly) when he first came home but not since then.

We are praying for good results from the sleep test and a good report on his heart. Hopefully they can begin to reduce some of the meds. And please pray with us for a safe trip.

Good news

Dean and Summer are on their return trip from Riley's. Some of the metabolic test results did NOT support the Pyruvate Carboxlase diagnosis. There still are more tests out there, but this is good news. We may never find out what caused all of this.

Simon did better on his feeding test but is still asperating liquids. However, they are adjusting some feedings and allowing Dean and Summer to begin to take him off the NG tube and skip (double-up) on feedings so he (they) can sleep longer.

Simon's development Doc said he was doing well which confirms our amateur observations.

So this is good news. As in all this journey, "may God is glorified through Simon!".

Thanks so much for praying.

Riley's again

Dean, Summer and Simon left for Riley's this morning. They will do a swallow study and see the developmental Doc. Pray that they take Simon off the NG tube. Simon appears to be developing fine but we don't know what to expect from the develomental doc.

Next week they will do the sleep study and check his heart. Simon has not had a rapid-heart episode since soon after he came home so we are hopeful that they can reduce some meds.

Please pray for a safe trip and for good report. Simon looks like a healthy little boy in every way. He has a wonderful smile and delightful disposition. He loves his big sister and brother.

Tom

[Posted from my cell phone]

Weekend work and Simons Appointment on Monday

We will begin doing demo on this house this weekend. I'm not sure what it will feel tearing appart what I have worked for 3 years to put together. At the very least it will give me a good workout.
I know many people have asked if there were ways they can help with the house. Well, this weekend is a good opportunity. Its work that doesnt require much skill (perfect for me) but will require a strong back. We will be tearing down plaster, drywall, cabinets, furniture and everything but the studds. Our house is located at 108 Maple St, Winona Lake, IN 46590. I hope to begin tomorrow morning around 9am. Bring whatever demo equipment you might have (sledge hammers, saws-all's, crow bars, etc...) The demo will be going on for a while so dont feel this is the only weekend to help.

Onto Simon's News

Simon has some of his first follow-up appointments on Monday. Summer and I will be heading down to Riles with him for a sleep study and a swallow test. If the sleep study goes well they can take him off of the sleep monitor. If the swallow test goes well we can get rid of the NG tube. We are most excited about he NG tube and it will be nice to get rid of the constant tape on his face and all the hastle it take to feed him.

Thanks,
Dean

Family Weekend

Here is a picture of him in his pumpkin outfit for Halloween.
We found out this week that we were given the wrong dietary amounts for Simon's feeding. We had been worried for a while about the problems he has had with spitting up and his discomfort after feedings. That coupled with the increase in mL that they were suggesting had us worried. We talked to the dietitian and found that we were told to follow the directions on the mix which was actually 50% more calories per feeding than he was supposed to have. This hasn't caused any problems for Simon other than a slight discomfort during feeding. We adjusted his feeding on Thursday and since then he has been able to digest the full volume they suggested and is now getting fussy when feeding time comes near (means he is getting hungry.)
We are still looking forward to when he can begin eating from a bottle.
Today we had to switch his NG tube from one nostril to the other so we left it out for 3 hours to give Simon some freedom and got a chance to get some video. So here it is. If you listen you can hear his little coos over the chatter of his older brother.


Thanks,
Dean

Monday Update

Simon has continued to do well at home though it is difficult to keep our two little ones away from him. They have been a little sick the past few weeks and it has been a chore having to remind them to wash their hands and not to touch or get close to Simon. Hopefully they will get better soon so they can start smotheirng Simon with kisses.
Simons eating has been a bit of a task the past week. He has spit-up his feeding a few times and we often catch ourselves running to him when we hear gurgling sounds after a feeding. The doctor said we need to keep as much food down so this has cause a little bit of worry for Summer and I. I think we have come to the conclusion though that we are feeding him a little too much. Since his NG tube goes right into his stomach, he has no way of telling us when he is full. Add to that the suggested increases in his feeding and I can expect him to have the problems he has had. We have just recently been less agressive with his feeding and I think that has helped a great deal.

I think we are both hoping that sometime soon his feeding schedule will change so that we dont have to get up every 3 hours to feed him. He has no problem sleeping through the night, it's just Summer and I that are having the difficulty sleeping. Maybe we can move him over to a feeding that has more substance and takes a little longer to digest. Its probably such a big pain to me because I have never had to handle the feedings with our first two kids because there isnt much I can do when they are nursing. But without the nursing I can get delegated with feedings which Summer has had to deal with for our first two kids. The wonders of parenthood.

We met with the construction company on Friday and went over a house layout that looks promising. Because of the situation we are in and our lack of flexibility with the insurance money from the fire we are forced to rebuild rather than move. We are going to be making a few improvements to better suit a family of our size which is exciting but it will also cost us a little more money. To help keep the costs down I hope to do some of the work myself (some of the easy and fun stuff like demolition.) We were told that it will take another 6 months to complete the rebuild which is another reason why I would like to do whatever I can to help speed up the process. I would greatly appreciate your prayers in this area as we are seeing the dust settle with the medical stuff but kicking up more with this house rebuild.

Thanks,
Dean

First Week Home

Simon has been home one week and doing well!

We've been enjoying watching him smile and interact with the family. His reactions and development appear to be wonderfully normal (he has a Doc visit today). It's incredibly good to have the whole family back together and enjoying one another.

The future is in God's hands. And we are glad.

Tom