Always Something

Hello - Please pray for Toby's HomeCare Waiver right now. We thought everything was resolved and now we're having issues with it again. They don't have him receiving nursing duty services in their system, which means our nurse is working and not getting paid - it is NOT because he doesn't qualify, but because someone hasn't renewed him in the computer system.

Also, we don't think it's anything major, but Monday Toby was so strong and yesterday and today Toby has been very floppy. He can't sit up; his head control is floppy, etc. We aren't sure if he's just going through some growing so all of his energy is going towards that or if it's because of his cold. I'm a little concerned, but we're not calling the doctor just yet. We will see how he does the next few days.

Bumbo Seat

Hello everyone. Toby is doing pretty well; although now he has a runny nose. We're still waiting for that first tooth to pop through. Toby's OT came today and her goal was for Toby to sit up in his Bumbo seat without help by Nov. 1st and he did. He is making a lot of progress (I'll try to take some photos soon). The new night nurse is starting tonight. It's always a little difficult to transition with a new person in your home. I'm looking forward to getting some sleep again (so is Bruce!). I was able to get away this past weekend to visit with some girlfriends from college. It was very great to see them. Have a good week!

A Few Milestones

I had to add 3 new new photos today. The other day Conor was laying on a pillow next to Toby, and they were having a fun time "talking" to each other. The new photo on the front page is of Toby having tummy time on his wedge. We are very proud at how he is learning to really hold his head up high and for extended periods of time. He is also drooling like crazy - no teeth just yet (if you look closely you can see it!!!) Toby is also learning how to move air around his trach and up over his vocal cords. Last week he was making noises for Grandpa Fabian (my dad) on the phone. It is great to hear his voice again.

Toby is still on oxygen, and he is now being treated for his trach infection. He is acting fine, though - very happy again and smiling all the time! We're praying by the end of the week, he won't need the oxygen anymore.

No More O2 Needed

Toby seems to be doing much better today. He does have an infection in his trach, so he will be on medication for that starting tomorrow. (They did a trach culture on Friday while at the ER). I shut off his O2 just a little while ago, and he's not needing it for right now, we will see how he does as the day goes on. Thank you for continuing to pray. 

Being Sick - Trip to the ER

Last night and today Toby is still needing lots of oxygen to keep his saturations up even when he's awake. We ended up taking him to the ER today because something just doesn't seem right. They did a head CT to see if it was his shunt, a chest x-ray, x-rays of his shunt and tubing to see if it was kinked. They took blood, etc., etc., etc., and he's fine. Nothing is showing up. The minute we shut off the O2, though , he desaturates and so the conclusion is that he has a virus, even though he has no runny nose or cough. We are back home now, and we will keep him on O2 through the weekend; if things still seem fishy, and he continues to act strange, we will pursue more with his shunt next week. Sometimes a shunt can be failing and it doesn't show up, even with all of the tests they did.

A New Night Nurse

Well, we interviewed the nurse last night and really liked her. The best part is the nights that we need her (Sun., Mon., and Wed.) are the nights she needs, so we don't have to move around our other night nurse (who we love!)

Toby has a bladder infection "sort of"...It's kind of hard to explain, but he had bacteria in there, but the count wasn't high enough to indicate an infection. They're still treating it with an antibiotic that is specific to just the urinary tract, so it doesn't kill off good bacteria in his body. Toby just isn't acting like himself, though. He's actually crying today (he never cries unless there's something wrong); he's serious (he's always smiling), and he just seems out of sorts. Please pray that we will have a clear picture of what it is - there are so many things to consider - respiratory problems, a cold, teeth, the shunt malfunctioning, among many other issues, so we will see what happens. Thank you again for always keeping us in your prayers and caring for us so much!

Odds and Ends

We might have a possibility of filling our night nurse position - we're hoping to interview her some time this week; we'll keep you updated. Toby also might have a bladder infection again (I'm about 95% positive he does). We took a sample today and they will test it; we should know by Wednesday. It frustrates me that he will be on yet another antibiotic, but this too is in God's hands.

Lastly, Bruce and I are starting the process of looking for our next place to call home. Please be in prayer as we search for a home that will incorporate Toby's mobility needs as he gets older. We're trying to take this into consideration, which obviously limits our choices, so your prayers with us on this would be wonderful. Some days I think that our search is hopeless, but I also hear God continuing to ask me to trust HIM. He will provide, and the only way that we will be able to explain it is that God did it and not us!