Planning for the Inevitable

Well, our trip to Florida was wonderful! We left on Tuesday and arrived back home about 3:30 a.m. this morning. We were able to relax, Bruce and Carl golfed, we swam, saw an alligator in the Everglades, and did all kinds of wonderful things. Our hotel was right on the beach, and the weather was beautiful; I even squeezed in a run on a path by the beach, which was beautiful!!

God taught me a very valuable lesson while we were gone. When we arrived at the airport on Tuesday night I called home to say we had arrived and learned that from 7:30 p.m.-10:30 p.m. there was no electricity at our house. Before we left, I had planned for every scenario, even made a video for all of the nurses showing them how to take care of Toby, but had forgotten to think this one through. It was chaotic, the back-up battery wasn't charged, we didn't have flashlights in the house, and in the end they had to call 911. Toby was GREAT; they DIDN'T call 911 because Toby was in distress, they just needed power for the ventilator, and our generator wasn't working right. Martha and Brenda (two friends from our church) along with our neighbor and my mom problem solved and worked through it all. The Hilliard EMT and Fire were here, and provided light and generator power. This situation was EXTREMELY humbling for me. I felt like I had planned out everything, and then felt so incompetent because we didn't even have flashlights, the back-up power source for the ventilator wasn't charged, etc., etc., etc., (our power never goes out by the way). I hate asking for help, and then not only were people volunteering to take care of Toby, they were experiencing major stress while doing it. There is no way I can ever repay that. Finally, God spoke in the middle of my tirade of berating myself and questioning why God allowed this to happen. He said, because "I'm in control, STILL! You couldn't be there because you would have been able to control all of it, and intervened because you know where things are and how to move Toby, etc. Everything would have been fine, but you still need to remember to trust me, and allow me to be in control, so you had to be in Florida and learn to trust from a distance." So, then I had to stop and think about the ways He provided in this situation, and there are too many to list on the web-site today, but He did. I learned a very valuable lesson - go and buy flashlights for each room in the house, and that God is still in control -always is, even when I think that I am. Thank you, God. I am humbled by all of the help we had while we were away, something I can never repay, but I can still say thank you. So, thank you - Martha, Brenda, Erika, Jeannette, Paula, Mom, Toni, Aliena, Mareta, Lyndi, Tom, Mom & Dad Holt, and Hilliard EMS and Fire. Thank you for praying while we were away too!!

Mommy and Daddy are Going on a Trip

The big prayer requests this week are for Toby to stay healthy and things to go well while we are in Florida. Garrett indeed has quite a cough and a runny nose. Pray for everyone to feel comfortable while taking care of Toby when are regular nurses are not here. My mom will be here with the older two boys and Bruce's sister Toni and his sister-in-law Aliena will be here for Toby. It seems silly, but so far the weather forecast for our trip is thunderstorms every day; pray that we will have some sunny weather so we can relax and be refreshed. 

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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.