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!

Daily Dose: Thursday, July 1

Hope is prepared and ready to go for surgery tomorrow. She is tentatively on the schedule for 2pm but if emergencies (other surgeries) come up she may get bumped later in the day or even to Friday morning. Hope spend all day getting ready for her surgery. She took a long soak in the tub. Hope won't be able to take a bath for 10 days (ewwwww) or so after the surgery, but once she is all healed up and her incision looks good she'll be back to splashing around just like the does now.

As of last night Hope was up to 10 pounds 13 ounces!!!! She is getting closer and closer to 11 pounds!

As you can see, Hope is still maintaining her fashion sense. She is modeling a new ensemble from the Hope Collection. *Note the matching socks.

Hope has had lots of visitors in the last week and wants to thank everyone that has come to visit her: Nancy Vardon, Judy Convertini, Caitlin Zinnecker, Joyce Carlson and Pastor Ruth. She loves seeing all of these people who care so much about her!!

Daily Dose, Monday June 8

Hope shared one of daddy's favorite past times with him today - celebrating her support of her (daddy's) favorite baseball team, the Boston Red Sox. Hope was so happy when her friend Ann sent her this hat so she can now share a hobby with daddy. Hope and daddy cuddled and talked all about the Red Sox today.

Hope also spent some time playing with Jason her physical therapist and Marla, her occupational therapist. Everyone was very happy with awake and alert Hope was and how well she did with her therapies. Jason talked to mommy and daddy about bringing in some play mats so that Hope can get down on the floor and play with everyone like a regular baby. Hope, mommy and daddy all thought this was a fantastic idea and are all very excited about the idea of getting to play together like that.

Hope took another tub bath today. Although she's still getting used to the sensation of slipping into a tub of warm water she's getting more and more used to the spa treatments. After the warm soak, Hope got a manicure (her fingernails trimmed) and a facial (some aquaphor lotion rubbed on the dry spot on her forehead). Hope thinks she could get very used to this pampering kind of stuff!!

Daily Dose, Saturday June 6

Today was a very big day for Hope. She got to take her first tub bath! She wasn't sure what to think about sitting in a tub of warm soapy water at first but she quickly decided that the spa treatment was working for her. She got very relaxed and after drying off and getting dressed (fashionably matching her unstuffed teddy bear), she promptly drifted off to sleep for an afternoon nap.

After waking up from her nap Hope met lots of new people. She got to meet Dick and Marty Osborn, Pastor Ruth McCarty and Phil and Mary Ernvall. She was very happy to meet all these people.