A New Chapter

Sorry for the lack of updates lately! I wish I could say that no news is good news, but apparently we like to keep things interesting around here. We traveled up to UVA for Bobby's cardiology check-up on the16th of April. He looked great and they did not make any changes to his medication. Brogan had ear tubes placed on April 19th. It was pretty simple compared to what we had been through! However, he decided to get his first tooth a few days later, so his sleeping and eating still are great! To top things off he developed a croupy virus and is now wheezing again and requiring breathing treatmets!

Bobby is doing quite well. He is pretty much back to himself and has turned into quite a little chatterbox. He finally has stopped waking in the middle of the night (He had been crying about boo-boos and the hospital) but still occasionally has his eyes open. The biggest frustration is his eating. He is still not eating as much as he was pre-surgery, but I understand that this is pretty common. It is just hard to see him so skinny! Last Friday he went for another cardiology check-up and everything looked great. He is being weaned from 1 medicine and when he goes back on May 19th, they will begin to wean some of the diuretics. But the most exciting news about Bobby is that he has gone potty in the big boy potty 2 times! We are hoping that this is the start of something good (although interesting timing given the 3 diurectics he is currently taking)!

On Wednesday evening I travelled up to CHOP again, but this time with Brogan. I was seeking a second opinion about his head. I did not doubt the diagnosis, but was concerned about the surgical options. Unfortunately, there is one surgery that can be performed with great success at 3 months of age. Since we are well beyond that point, the best option for Brogan would be a 2 stage surgery, called Cranial Vault Reconstruction. I can get into the specifics later, but the hardest part for me to digest right now is having another child go through 2 major surgeries...2-yikes! This is not a life-threatening condition by any means, and for that I am grateful. And once he has these surgeries, we should be able to move forward without looking back. We planned to have the surgeries at CHOP, but to make matters even more interesting, we are in the process of moving to Charlotte. John has a wonderful job opportunity to return to the YMCA, and the boys and I will join him there at the end of the school year. So basically the cranio-facial team at CHOP is working to find a cranio-facial clinic in North Carolina that is highly trained and able to take great care of Brogan without us having to be so stretched between NC and PA. Hopefully we will get more information next week that I can pass along. While I was at CHOP, they sent a geneticist in to examine Brogan and talk with me. The highlight of the day was that she said Brogan is perfectly normal (other than the sagittal craniosynostosis), and that there is no connection between Bobby's heart defect and Brogan's head. That is GOOD news! I also got to see a few of the Child Life Specialists and the Music Therapist who worked with Bobby during our stay. It was great to see some familiar faces.

Ok, I guess that is all for tonight. Thank you for keeping updated on the Weeks Family! We are always appreciative of your prayers.

Rachael