First Trip to Park

Today we took the boys to the park and rigged a blanket to hold Toby into the swing. He loved the motion of the swing, so of course we had to take a photo of him with the nurse's phone (I forgot my camera!). Not much to update - the biggest prayer request now is for everyone to stay healthy, especially Toby - before and during our trip to Florida. Garrett has a cold and a runny nose right now and I've been feeling like I'm coming down with a cold, so pray that Toby doesn't get it. Have a great weekend!

First Sleep Study

Toby's sleep study went fairly well last night. I haven't seen him cry that hard in awhile, though, when they were gluing and drying all of those little probes with the wires to his head. He slept okay - not as deep as he usually does, but he did sleep for an extended period of time, which was good. It didn't seem like a relaxed sleep to me. He looked so funny with all those wires glued to his body. The test results are close to 900 pages long, so the doctor will take about a week to read them and then he'll send his report to the pulmonary doctor and from there we should know how well the vent is doing it's job and if they'll make any changes. I did post the new photos - some from the sleep study and then a few from his Physical Therapy today. He is doing really well pushing up and getting his head under control. Conor really helped out today with getting him motivated to roll back and forth from side to side!

G-tube is In and G-tube is Out!

Please pray for the sleep study tomorrow night. I'm feeling a little overwhelmed with trying to remember everything I need to take to the hospital for it.

Then, today Toby was supposed to be taking a nap, and he was awake - so our nurse looked in the video monitor and there was Toby lying in bed, waving around his g-tube in the air. We went in and he had a big smile on his face hiding behind his pacifier - he was laughing. The little stinker...it was kind of funny. The MicKey button has two parts where the different tubes hook into it, and the g-tube end came out. His MicKey Button is still in place, meaning he can still get his food, etc., but now we're headed to the hopsital an hour and a half earlier tomorrow night before the sleep study to get it replaced!!!

Also, Bruce and I are actually going to get away for a few days to Florida without kids!!! We're going with the Weise's and we're very excited. It's taking a lot of planning. My mom is coming to help with the older boys. A friend from church, Bruce's sister and sister-in-law who are both nurses are coming to help to take care of Toby in the times when we don't have nurses. Pray that things go smoothly, that Toby does NOT get sick, and that I don't fret while we're away. Thank you!

First Hair Cut

Toby had his first haircut today. It was getting really long and wispy. He did great, kept craning his head to see what she was doing. He looks so grown up now. He also had PT and he is doing much better with holding his head up.

Things are going well, not much to update medically. When you don't read any updates - assume everything is going well! :) He has a sleep study next Tuesday night overnight, which will be involved - just getting him to the hospital, etc. and I will be staying with him overnight. I hope it goes well, and that we both get some sleep! Have a great day.

God Continues to Provide

The results of Toby's test came back - no Hirschsprung's Disease. That's great news, it means no surgery, but he still is having many issues stooling on his own without the help of suppositories. This is very common with his disorder, but it seems strange to have issues so young. We will continue to collaborate with the GI doctor on the issue. We had a great weekend with my parents and sister. We were able to take Toby to the zoo and went for a walk on Sunday. The weather was so nice, but now it's hot and humid, so we're bound to the house again!!

The issue with the HomeCare Waiver is still in "limbo", but I've been able to get a few answers from someone at the Ohio Jobs and Family Services Department. I know they're scheduling hearings a few months out, so it may be awhile before this issue is resolved. Thank you for your continued prayers. God continues to provide for our nursing care, therapy, etc.

Pulmonary Appointment

Hello :) Toby's pulmonary appointment went very well today. His chest x-ray looked great. The doctor was a little bit concerned about the wheezing he heard in his lungs and that we hear at home, so he's putting him on another medication. The other thing we're really watching is his weight. He lost weight last week, and so we called the nutritionist and they increased his calories, and he gained it back, but we are still needing to keep a close eye on it. It gets confusing because each specialist weighs him and it's different on every scale! We just try to base it on the way we weigh him at home. The next big appointment is the sleep study in 2 1/2 weeks. The pulmonologist will be relying on this to really tell him how well the ventilator is supporting Toby. That's all for now - we're going to enjoy the beautiful weather this weekend with family. Have a great Labor Day.

Rectal Biopsy

Toby's biopsy went very well. He did great, we probably won't know the results until mid-next week because of the holiday and the GI doctor is out of town. My parents and one sister are coming for a visit this weekend, so we're looking forward to spending time with them! Toby has a chest x-ray tomorrow and a check-up with the Pulmonary doctor. We love Toby's pulmonary doctor, so we look forward to these appointments - they are always very beneficial. Have a great weekend!