Moving in the Right Direction

God continues to give us strength through each day. Toby is doing well - he does have a little bit of an infection around his g-tube site, so hopefully that will get better soon. They did an x-ray of his tummy today because it was distended and it showed a lot of gas! Those of you that have been with him know this to be true, he's a very gassy baby (loud too - fits right in with his brothers)...We do all the things we can for him - gas drops, and ferrell bags (these are used to vent his g-tube). Yesterday we received more of our equipment, and went through some more information on the vent tonight. I was able to get away a little bit today and have lunch with an author and speaker that is doing a conference at our church this weekend, and also speaking to our moms group, which I help coordinate. It was a nice reprieve from everything. Conor's eyes continue to look great - except two days ago he broke his glasses!!!! He's getting new ones tomorrow. We interview the nurse at 3:00 p.m. on Friday - we hope this is it, so we can move along and get him home. I just have to say thank you again - I am overwhelmed at times by the giving of so many people, and it's extremely humbling. The encouraging cards, guestbook entries, e-mails lift us up and we read each and every one. Thank you - Good night! :)

Coordinating Care

The training went well yesterday on the ventilator, and today we have more training with the pulse oximeter and the suction machine. We also have another interview for a day nurse on Friday at 3:00 p.m. Toby is doing well - he has some redness around his g-tube site, so pray that it doesn't get infected. I am feeling a little bit overwhelmed right now as we look to next week; we're going to need friends to help take care of the boys, as we don't have any family that can come to help. Bruce and I will also need to take care of Toby for 24 hours on our own before he can be discharged, so we will do that over the weekend and into next week. They recommend doing it separately so we each feel comfortable with his care. I'm starting to feel tired, just tired - ready for the crazy schedule to be over. My brain hurts when I try to figure out how we're going to coordinate next week. God continues to tell me to trust, and let Him be in control!

Our friends Erika & Carl (who have helped us so much by scheduling our help with Toby at the hospital and updated the website :) have strep throat, so they are under the weather. Pray they heal quickly, and that their children will not get it.

Moving in the Right Direction

Things are starting to roll along in the right direction to bring Toby home. We will have our training this week on the ventilator, and had our home inspected to make sure the wiring can sustain all of the equipment. The nurses are the biggest decision at this point. I think we're going to be able to share Erika & Carl's nurse for Evan. She will be able to come to our house on Tuesdays, so now we need a day nurse for the other week days as well as a night nurse. Toby is doing great also. :) He's such a popular kid - all the nurses want to have him at the hospital; I just wish we could take some of those nurses home with us! They're wonderful.

Nurse Interviews - Never Ending

The interview with the daytime nurse also went well. We're not sure if she's the one for us, though, so we are going to ask for someone else - just to have a comparison. It's hard choosing someone that will be in our house 40 hours a week, but we know it will work out soon. We're hoping to get things rolling this week with the medical equipment company coming out to check our electrical and make sure that things can support a ventilator, etc. We are ready for him to come home soon.

Waiting on Equipment

The interview with the night nurse went pretty well. She seemed competent and friendly. We are praying about if we should ask her to come or not. Today is our other interview for the day nurse. Toby is doing well - again we're just waiting on equipment and vent. training. Bruce's niece, nephew-in-law and great niece are with us this weekend, helping us with the boys and Toby. It's such a blessing to have so much help!

Nurse Interviews

This is Erika updating!

Carrie asked me to write a quick note on here to pray for them as they interview their nurses. The first interview is tonight (Friday) at 8pm and the other one is 1pm tomorrow (Saturday). From experience, this is a hard process. Carrie and Bruce know they need nursing care to help care for Toby, but it is very difficult to have somebody you don't know well in your house for 16 hours every day. These nurses will have an influence, not only on Toby, but also on Conor and Garrett. What a blessing if these nurses believed the same way the Holts do! Pray that Carrie and Bruce will know one way or the other whether these women they are interviewing are right for their family. Once they do find nurses, pray that it is a good fit! They will definitely need continued prayer in this area, not only this weekend, but also in the months to come!

Bow the Knee

Toby continues to have good days and nights. Bruce changed his trach today with the help of the nurse practitioner and myself. It wasn't as intimidating as we thought. He cntinues to steal the hearts of the nurses, doctors, and therapists. (Toby, not Bruce! :) :)!!! ) Conor also continues to do well after his surgery, and his eyes seem to be straight. He even went to school today.

On Sunday, Bruce and I were able to attend church with our family, and this song that our choir sang really touched our hearts, and I wanted to share the words with you.

Bow The Knee

There are moments on our journey following the Lord 
where God illumines every step we take 
There are times when circumstances make perfect sense to us as we try to understand each move He makes 
When the path grows dim 
and our questions have no answers turn to him

Chorus 
Bow the Knee 
Trust the heart of your father 
When the answer goes beyond what you can see 
Bow the Knee 
lift your eyes towards Heaven 
and believe the One who holds eternity 
and when you don't understand, the purpose of his plan 
in the presence of the king Bow the Knee

Verse 2 
There are days when clouds surround us and the rain begins to fall 
the cold and lonely winds wont cease to blow 
And there seems to be no reason for the suffering we feel 
We are tempted to believe God does not know 
when the storms arise, don't forget we live by faith and not by sight

May the journey we have taken encourage you to draw closer to God as He is all we need, and He is the only one worthy of bowing our knees to. Thank you, God for guiding us every step of the way.