Ok, forgive the 70's flashback (I know some of you still remember Tony Orlando and Dawn - even more, you remember their variety show! - and others of you weren't even born yet and are asking Tony who?), but that's the silly song going through my head when we heard the news that Titus is coming home on Sunday, December 30, unless there are any circumstances that happen today to prevent that.
Needless to say, we are in shock and disbelief that this day has arrived - you would think we would be better prepared. They had told us to expect 2-3 weeks after surgery, so when it was mentioned it would happen this soon, we kept questioning the doctors "are you sure?" But, they are sure. They have even taken all the monitors off of him and let us hold him several times this week without any monitors. I had forgotten how easy it is to hold a baby without having to negotiate 4-6 different wires and cables that tether you to the crib. Of course, I was still nervous about his oxygen levels and respiratory rate, but I soon relaxed and watched his face. It wasn't turning blue, so he was fine! As it turns out, I was the one who needed to relax.
Titus had done remarkable since surgery. After 1 week, you can tell his jaw has pushed out and his breathing has improved. It still has a long ways to go, but just to see this improvement after one week is great. Several of you have asked if Titus is in pain when we turn the screws. From observing him, he has no reaction when we do it, which leads me to believe it does not hurt him at all. Each turn pushes the jaw 1/2 mm which really is miniscule when you look at it. We turn once in the morning and once in the afternoon.
He is back up to full feedings and has regained the weight he lost those few days after surgery.
Titus has been sucking on a pacifier the past few weeks and today they started working with him to see if he would swallow a few drops. He did fine and took about 3cc's of milk. Now, that's still a tiny amount, but it's a start and we can start working with him several times a day to get him use to swallowing some milk. This will be one of the areas that we will be working on a lot over the next few months. We will still have his g-tube for feedings, but the goal is to get him to take his milk through the mouth and not through the g-tube. This could take all year, but it's one of the many areas we will be working on with him.
We also have recieved the list of appointments that need to be made for Titus over the next few months. Titus will have another surgery in a few months to remove the jaw distraction device (probably mid March). We also have meetings with the ENT to fit Titus for hearing aids and then plan the procedure for cochlear implants. We also have visits to Scottish Rite Hospital to begin the casting for his right foot which is turned. And, along the way, he will have his normal well visits with the pediatrician, and twice a week visits from the therapists at home. Becky will be busy coordinating these visits while homeschooling Aidan and Noah.
This morning, I kept repeating Prov. 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will direct your paths." The past 6 1/2 weeks have been an incredible lesson in learning to trust. I had to trust doctors I didn't know to do what was best, I had to trust nurses we hadn't met to take care at night when we weren't there. I had to trust surgeons as they wheeled my son away to surgery. But most of all, I had to trust God that he had plan and purpose. And, that I may not know the reason why today or for months to come, but for today, I have to TRUST. For a melancholy like me, trust is not always an easy thing. Maybe's it one of the reasons why I look to do things by myself since I trust myself. But to put my trust in God and in others is not any easy thing to do - and yet, as the verse states "trust in the Lord . . . lean not on your understanding." I pray for Titus that as he grows older and we recount these days back to him, he will see the journey of trust in the Lord - and he will learn to trust in Him.
Words are so hard to express our gratitude for all the prayers, emails, cards, and letters (especially from people we don't even know.) You have blessed us beyond measure. We have printed off all the emails and have put them in book for Titus.
For those who have taken care of my children - thank you. You provided much comfort and solace to Aidan, Noah, Tucker, and Cade when we couldn't be there.
For those of you who provided food - thank you. I know I have gained weight and our freezer is still full.
For those of you who cleaned our house and washed our clothes - thank you. I am truly humbled. Cleaning the house is generally my job and to let go and let someone else do this was really difficult for me. But to come home and have our house clean and clothes washed was such a blessing. BTW, I have finally found all my underwear and socks ( they were just put in a place we don't normally put them - but I was worried for a few days that someone had thorwn out all my underwear and socks).
Thanks again and Happy New Year!
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