Let's play a game

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)

Making Progress

Hope with Great Grandma Anderson

Hope & Aunt Emily

All healed up

Hope has had a wonderful couple of weeks. As you can see from the picture, the incision from her surgery has healed to the point you can hardly even see it. She saw the surgeon at U of M last week and he was very happy with how it all looks. The big activation day is just a couple weeks away now!

Hope has also made great progress on the ventilator. At her appointment with the pulmonologist we put together a plan to begin weaning Hope's ventilator settings on a regular basis. On this wean we took her rate from 31 breaths per minute down to 29. She has done very well with it and if she continues to do so, we will lower the rate by 2 every two weeks. After she reaches a rate of 21 we will begin to lower the PEEP (the amount of pressure that the vent gives her continuously to keep her airway open).

Hope is also now on less oxygen. She has done great with that as well. In addition to ALL of this Hope is now getting only 2 breathing treatments each day. This makes her very happy because she really doesn't like getting the breathing treatments.

All of these changes are little steps towards getting Hope off of the ventilator - which goes without saying, would be WONDERFUL!!

Long overdue update

Hope loves the outdoors and now has some stylin' shades to wear while she relaxes in the sun

Hope & Daddy sitting outside enjoying the apple blossoms


Lovin' bathtime!!

Well it's been so long since we've had a good update on Hope that I can't even remember all the stuff I need to write about...... The VERY big news is that all of the insurance paperwork has been cleared and Hope has a surgery date for her cochlear implant - JULY 1st!! We have one more finally consultation with the surgeon on June 11th. We are all a bit nervous just because it's surgery but very excited about the possibilities that this will open up for Hope.

So the time line is this: July 1st Hope will have the surgery to place the internal portion of the implant. This is the portion that receives the electronic info and sends it to the auditory nerve. About 4 weeks after the surgery (so around the beginning of August) Hope will make another trip to Ann Arbor to have the external portion of the implant/device activated. This portion attaches to the internal portion via a magnet and is removed when she sleeps, bathes etc. The audiologist says in the beginning what Hope will hear will be very electronic and "clicky". She will have to go back regularly to have the programming adjusted and over time if all goes well she should be able to hear voices and music and all of the sounds we normally hear.

No new changes have been made to Hope's ventilator settings. Around the time that we were going to make the latest changes Hope had some blood work done that showed she needed to stop taking her diuretic. This is good news in the overall scheme of things because it means one less medication, however, it made the pulmonologist nervous to get rid of the medication AND make ventilator changes at the same time. We are now hoping to make another wean towards the end of this month.

On a lighter note, as you can see from some of the photos, Hope has been getting outside more now that the weather is warmer. She loves to ride in her wagon and to sit and watch mommy and daddy work in the garden!

Easter & Doctor Updates

Hope in her Sunday Dress

All Smiles

Surveying the Easter Bounty

Cuddling with Great-Grandma Anderson

Hope has had a wonderful couple of weeks. Now that we are coming out of RSV season (cold and flu season to the rest of us) Hope is able to get "out and about" more. She celebrated her "freedom" by making a trip to church on Easter Sunday. Everyone was so happy to see her and she was so happy to get all of the attention :)

After church Hope headed up to Great-Grandma Anderson and Great Aunt Dawn's house to see what the easter bunny had left for her there. After surveying all the colorful eggs E.B. brought she headed home for a nice long nap.

Hope had so much fun at church on Easter that she wanted to go back again this past Sunday, so she put on her pretty white dress and her most sparkly shoes and headed back to church. The easter bunny didn't come to visit her again this week, but she was okay with that because she got some good cuddle time in with Great Grandma Anderson instead. Both Hope and Great Grandma were so comfy that they dozed off and tried to skip lunch.

In doctor news.... Hope's latest trip to the pulmonologist was VERY successful. They lowered the amount of some of the medications she is getting and they have begun to lower her ventilator settings. This is the first of many, many small steps to getting Hope off of the ventilator and eventually without the trach. So far Hope has tolerated the changes VERY well. She has to go in for lab work this afternoon to make sure that everything looks good. Hope doesn't like having blood work drawn :( Hopefully the technician will be very nice and gentle.