Testing 1...2...3

Next week I will be out of town in San Francisco for a conference for most of the week, I have never been away from the family by myself for so long before. It's going to be a challenge for me but I know it's going to be good too! I have never been to S.F. so this will be quite the adventure! Hopefully the city can handle me :).

We have gotten Payton's CT scan scheduled for the morning of June 3rd at 6:30 am. I guess they don't typically do CT scans with anesthesia but that is what the Dr ordered for Payton and that made the scheduling a little tricky. Payton has to have a high risk anesthesiologist and those take a little longer to get in with. It's got me a little nervous since we have had quite a roller coaster ride about this whole thing so far. There is part of me that just is ready to get a good and final answer and hopefully this is the last test they will need for that. Please keep us in prayer as we head into the procedure on that morning that the Dr's will get what they need and we don't have to do any more testing.

Flea Market Game?!

Oh Boy! We had so much fun today! We took the kids to the Flea Market and decided to play the Flea Market Game. I found this idea on Pinterest (yes I am an addict, there needs to be a 12 step program with all the details on Pinterest!!) Everyone was given only $10 to make the best deals of the day. The kids learned what a good price was and how to barter/haggle a little bit to get the better price. We decided everyone was a winner with all of our great finds and that all winners need Dairy Queen blizzards! What a great way to spend our day, plus we had some great friends join us. Then we headed over to the library and got some books to get us through the next few weeks, of course the kids will be ready to take theirs back in 2 days. Got home and has some brats, with sauerkraut of course. Now it's time to chill with a drink in my hand and watch a movie with my amazing husband. These kinds of days where we can just be like any other family for just a few hours are priceless. For more great ideas on fun things to do with the family and great meal ideas follow me on Pinterest @ http://www.pinterest.com/tanyaj122/ . We are at a crossroads in our lives and to just take the time to enjoy these little moments is an awesome gift from an amazing God.

Guess everyone makes mistakes

So after Payton had her upper GI done I had told you all that the Dr had said that he didn't see the growth in Paytons throat and that it wasn't vascular. Sadly we received a phone call yesterday evening from the GI saying that they made a mistake and that they believe it to be a vascular anomaly. This means that the steps we had planned on going forward to dialate her throat are right now a no go. She is schedule to have a CT scan done in the next few weeks and we will see what that looks like. This should give the Dr's a better idea of what it is connecting to. If that test comes back that it is vascular than we cannot dialate or remove it since that is just to dangerous. That would mean some more testing to see if this is something that is growing and changing. If it is obviously we would have to start looking at some other options for her as far as feeding goes. We were told when Payton was very small that children born with her type of heart condition often have other issues with arteries and vessels but you just have to wait to find them most of the time. Looks like we have made our first discovery.

I have to admit I was pretty upset yesterday evening. I know that Dr's are only human and just as capable of making mistakes as I am. I am just struggling right now with the roller coaster ride of ups and downs we have had in the last few weeks. I know that He has this all in His capable hands. I have prayed for God to take this away from her, but also that not my will but His will be done through all of this. I ask that you please continue to pray for all of us and for the Dr's as we go forward from here.

Answers Finally

So after over a month of waiting, and back and forth phone calls, and feeling just a little bit ignored. We have some answers to some of our questions on Payton's endoscopy results. The ring like growth in her esophagus is not vascular! Praise God that was what we were hoping for. She will have one more test this coming Monday just to take another look at it. Monday morning she has an upper GI study (a swallow study) and they will just watch her eat under an x ray essentially. As long as that all looks good, which the Dr is fairly certain it will, they will move on to the next steps. That will mean that about 2 weeks from Monday they will do a dilation. It is a fairly simple procedure. They will put the same type of camera down her throat that they used for the endoscopy but there will be a balloon on the end of it and they will inflate that to stretch out that portion of her throat to the same size as the rest. They may have to repeat this one or two more times to get it to stay permanently but it is still better than the risks associate with having it surgically fixed. We are also on the waiting list, typically about 6 weeks, to see the motility specialist at Children's and see if he can answer some of the other questions about Payton's digestion.


In other news spring football has ended...with a 4-1 record. Proud of our boys, and sad too since this is the last season they will all play together. From this point forward they will each play for their respect middle and high schools. Coach Ryan had a hard time not crying saying goodbye to some of the kids. He really loved coaching them, he wishes he had the time to coach a team of younger kids next year but college just won't allow that right now. Robert did great and only struggled with the confidence he needed to get out there and play like a champ once. We realized after the first couple of games that what happened to him last fall was definetly more on his mind and still having much more effect than we realized. We made the decision to put him in therapy and WOW! It has made such a difference. He really likes the therapist and comes out of there feeling such a relief and loving that he has someone that he can share with and really just talk to without any judgement. I am so happy that this is a positive experience for him. The girls are counting down the days to the end of the school year, and so is Ryan :).  I can't believe this school year is already over, it went so fast. Katie is in archery club and still rocking it in choir. She went out for the solo again but didn't get it this time, and she is OK with that, she says everyone should get the opportunity to get the solo. Andie is the most hormonal 10 year old I have ever seen. Everything is filled with drama in her little life already. Not sure what I am going to do when she is a teenager. Lord give me strength! I can't believe that next year Ian will be a Jr high student. That just leaves Andie and Payton in elementary school. He is really wanting to play football this fall and I hope he gets to!

We are still working on fundraising to get to Chicago this summer for the Aicardi conference. One of the Dr's who is studying Aicardi syndrome contacted Payton's preschool teacher when he found out she had an Aicardi student to ask if we would be willing to talk to him. He will be at the conference this year and it would be an amazing opportunity for us to sit and talk with him without some of the expenses of cross country travel to get to him at UCLA. Please help us get there if you can. Whether you can help with a donation or just by sharing our fundraising page it all helps.