Hope can hear!

After Activation

Hope can hear!

We got a call first thing Tuesday morning (the day of the activation) and learned that the audiologist that was going to do Hope's activation was out of the office sick. We were given the option of either waiting until Thursday or the director of the program was offering to do the activation at 2:30 (just a little later than the originally scheduled appointment). We decided to do it at 2:30 because Andrew had taken the day off and we didn't want Hope to have to wait any longer than she already had.

We had smooth sailing until we got to Brighton where the expressway was closed due to an overturned semi-truck that had apparently spilled battery acid all over the road. We called the office to let them know our situation and thankfully they were willing to wait for us. Finally we arrived (2 hours later than the scheduled appointment).

The external portion of Hope's implant was put on her head and connected to the computer. Dr. Zwolan then ran some tests to see at what levels we thought Hope might be detecting sound. The computer would play three beeps and then we would look for a response from Hope. We weren't sure what we would see, whether the sound would surprise her, scare her, make her laugh... well we definitely got a response..... She cried and screamed. Hope didn't not like sound at first.

Once we determined what level Hope was detecting the sound at, her implant was set at a lower level to allow her to adjust to sound. We will slowly and gradually increase these settings over time to get her used to sound.

Hope is also working on improving her fine motor skills. She has made a game out of reaching up, grabbing the processor and coil and pulling it right off of her head. She definitely knows how to get what she wants! :)

We are all so thankful and happy and want to thank everyone for all of their prayers. We go back to Ann Arbor on Thursday for a programming adjustment and will let everyone know how Hope does figuring out her new world full of sound!

(Grandpa Robinson took video of the activation but I haven't figured out how upload it onto the computer yet. As soon as I do I'll post it.)

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!!

Post Surgery Update

Hope made it very successfully through her cochlear implant surgery. She arrived at U of M and check in around 12:30pm on Thursday. After getting all checked out (blood pressure, temperature, weight etc) we found out that they had not reserved a bed (room) for her following the surgery. There was a scramble to find a bed and when we came close to not being able to find one for her we almost had to pack up and come home. That would not have made anyone very happy! Eventually though (about 2 hours later) they had a bed for her and Hope was wheeled off for surgery.

The surgery began with a test that involved putting needles in her ear and electrically stimulating her auditory nerve. They began with the right ear and found no response. Then they tested the left ear. They had to use more "power" than usual but were able to get a good clear response on the left side. However, they found that as they repeated the stimulation the response diminished. This is called "Adaptation". Unfortunately there isn't a lot of research or knowledge available on this condition. The surgeon felt that it was still worth proceeding and that Hope would still be able to gain access to sound by having the implant done.

Hope's mom, dad, Grandma Holtz, Grandpa Holtz, Grandma Robinson and Grandpa Robinson all waited patently in waiting area for the next 5 hours while the surgery was performed. Everyone was very eager to see her after the surgery and she looked great! She was a bit groggy but seemed to be feeling well. Hope had to stay one night in the hospital but was released the next morning. Although she has been a little more sleepy than usual, she is feeling well and is mostly back to her normal self. There is just a small incision behind her left ear. She will go back to see the surgeon again in two weeks and the big day of activation is August 17th!

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!

March 26, 2010

Hope with Grandma & Grandpa Holtz

Grandpa and Hope showing off her new outfit



Out for a walk


My new pink hat (Thank you Jackie!)

More cuddling with Grandpa & Grandma


It has been quite a month for Hope. Hope spent last week cuddling, playing and visitng with her Grandpa and Grandma Holtz who came to visit from North Carolina. They spent lots of time catching up and Hope was so very happy to see them again.

We were all enjoying the beautiful weather last week and Hope didn't want to miss out so we all ventured out for a walk one day. She wasn't too thrilled about having to wear a hat and bundle up but once she got her pretty new pink hat she didn't mind wearing a hat so much. We are all looking forward to the warmer weather so we can take more walks!

We have made a few more trips to Ann Arbor in preparation for the cochlear implants. Hope, Daddy & Mommy met with the surgeon on their last visit. So far there doesn't appear to be anything that would stand in the way of Hope receiving the implant. We are now just waiting for the final insurance approvals. Once we have those, we will have a couple more final appointments (to pick out the actual implant device and to have a final pre-op meeting with the surgeon) and then the surgery should be scheduled within a month after that.

Hope has several appointments this week. The big one is with the pulmonologist. After Hope's last appointment with the pulmonologist they said that if she was doing as well at this appointment as she was at the last, then they would consider lowering Hope's ventilator settings. This is a HUGE step forward; it will be the first time Hope's ventilator settings will have been lowered since she left the hospital. Pray that eveything goes well.

The other big news that Hope has is......HER FIRST TOOTH has popped through! Actually the second tooth popped through just this morning! She is on her way to a mouth full of pearly whites :)

Wednesday, March 3, 2010

Hope has had a busy week. She made two trips to Ann Arbor; one on Friday and one on Tuesday. The trip on Friday was quite the adventure for Hope. Hope, Mommy, Daddy and Grandpa Robinson all made the drive to Ann Arbor with no trouble, but while they were there it started to snow. The roads got really bad and it took them all twice as long as it should have to get home. Thankfully they all made it safely. The trip on Tuesday was much better, with lots of sunshine and no snow!

The doctor visits themselves are more of a formality at this point. Hope has to go through some basic hearing tests in the sound booth. They play sounds into earphones in Hope's ears to see if she seems like she is responding to the sound. She also had to meet with a speech therapist to determine her basic level of communication. So far everyone has determined that the cochlear implants are neccessary and wouuld benefit Hope greatly. We meet with the surgeon next week on Friday and then have one more consultation with the audiologist. The surgery hasn't been scheduled yet but we should know more about that before long.

February 21, 2010

Hope Admiring Herself in the Mirror

Hope has had a very good couple of weeks. She went to the nephrologist (kidney doctor) and many of the concerns that they had previously, we are no longer too worried about. Her blood pressure had been a little high but the doctor thinks it might just have been the inaccuracy of the blood pressure cuffs, so we aren't going to take her blood pressures regularly any more. Also, her latest blood work came back normal which is fantastic. When Hope was hospitalized back in September she had a lot of blood work done then and in the weeks following. Based on that blood work the doctors assumed Hope's kidneys were only working about about 50%. With this latest batch of blood work coming back normal they think that the spike we saw last fall was mostly if not all tied to the infection that hospitalized her and that her kidney function is far closer to normal than we thought.

Hope will be venturing back to Ann Arbor this week to begin her weekly pre-op visits for cochlear implant evaluations. She has to go 3 or 4 times in the next few weeks for evaluations and then once in March to meet the surgeon who will do the implants. Hope is not officially a candidate for the implant yet - she will have to have hearing tests done by the audiologist, with and without her hearing aids. If there is some evidence that she can hear but not well (even with the hearing aids) then she should be a candidate for the implants without further testing. If we don't see evidence of hearing then an MRI might be needed to confirm that her auditory nerve is present and at least some what developed. Hopefully these visits all go well; they make for long hard days for Hope.

Other great progress that Hope is making is that she seems to be reaching for some of her toys. She has grabbed on to a toy and picked it up once and she grabs for the toys in her crib. The is wonderful progress as one of her physical therapy goals is to develop an "active grasp", or taking the initiative to grasp an object instead of just holding on to it because it was placed in her hand.

Daily Dose: Wednesday, February 3, 2010

Hope's beautiful smile

Hope laughing it up

If she isn't the most beautiful girl in the world, I don't know who is!!! Seeing these pictures of Hope smiling and laughing has given me a little more motivation in my life and reminded me to pick my chin up and keep pushing through.

Now, back to Hope....

Hope is doing well. Things went quite well last Tuesday the long drive to Ann Arbor and the appointment. The appointment itself was rather uneventful as Hope's mommy & daddy really did not leave with any more information than they went with. It seemed to be the necessary introductory meeting for everyone: they had planned to tell us Hope would need a CT scan, hearing aids, etc. Hope has had these for months now, so there was really no new news. We have been told that we will need at least 4 more pre-op appointments with the cochlear implant team before surgery.

Other appointments last week have had more of an impact. Hope's appointment with the pulmonologist on Wednesday went extremely well. The pulmonologist was so impressed with Hope's status that they have begun weaning Hope of most of her respiratory medications, and if things continue to go well they will try to wean Hope's vent settings at our next appointment.

The somewhat less positive appointment was with the developmental pediatrics clinic. Hope was officially diagnosed with cerebral palsy (CP). Although we knew CP would be a likely outcome of Hope's brain injury, we were under the impression that it is rarely diagnosed before 2 years of age and no one was completely prepared for the news yesterday. Evidently, CP is a rather obvious diagnosis for Hope and the doctor felt no need to wait. While no one knows the form or severity of the disease yet, the news did hit everyone pretty hard.

Hope got her RSV vaccination Monday and had to be weighed beforehand. She weighed in at 24 pounds 5 ounces.... just slightly bigger than she was one year ago - 2 pounds 8 ounces!!!! Who would have thought she'd have come so far!!

As you can see from the picture, Hope has been smiling more and more and has even started laughing! It's a silent laugh because of the trach but it is still the most beautiful thing in the world right now :)

Daily Dose: Monday, January 25

Hope: up close and personal

Sleeping Hope

Hope in the mirror

Hope hasn't had too many doctors visits so far this year, but she has a big one coming up tomorrow. Tomorrow Hope (along with Mommy & Daddy and Grandma & Grandpa Robinson) will all load into the car and, bringing along ALLLLLL of Hope's equipment, will have a day trip. They will be traveling down to Ann Arbor to meet with with Hope's doctors there regarding cochlear implants. It should be quite the elaborate procedure throughout the day with all of Hope's equipment. When Hope is at home she breathes humidified air, but when she is in the car, she doesn't get that humidified air and tends to dry out a lot, which can cause her trach to need more changing or get clogged up, and we don't want that!! Since it will be a pretty long drive, along with the appointment, AND the drive back, Hope gets to take all of her home equipment, but that also means that Hope needed a bigger vehicle to make room for all of her equipment and her "escorts". So tomorrow morning everyone will load into a large SUV that the family rented just for Hope's trip.

In other news, Hope is getting back into the swing of things. Over the holidays she had a break from her physical and occupational therapists. Therapy has started back up again, and even though Hope wasn't overly thrilled at the beginning, she is starting to get back into the swing of things. She is getting so much better at holding her head up which is great!!

Hope is asking for lots of extra prayers tomorrow while the family is on the roads.

Daily Dose: Wednesday, November 25

Hope relaxing in her bouncy seat!

Bathtime!!

Hope is smiling!!

Hope has had a busy few weeks doing lots of things. As you can see, Hope is growing!! She is now over 21 pounds!!

Last week, Hope went to get her hearing aids adjusted. She was put in the sound booth and responded to bass tones. This is a big step because in order to have cochlear implants her auditory nerve must be developed. We are very happy that her auditory nerve seems to be developed, paving the way for her surgery.

This week, Hope went to the eye doctor and got great news!! The eye doctor said that Hope can see!! And it will only improve from here. She is far sighted and may need glasses if that doesn't improve but quite often kids like Hope will grow out of the impairment. Hope did very well tracking and locating so the eye doctor was very happy with the progress she has made.

Daily Dose: Wedesday, November 11

Ever since Saturday when Hope officially became an 11 month old she has been BUSY!!!

On Sunday the weather was so nice that Mommy & Daddy decided to take Hope for a walk. They walked up to Grandma & Grandpa R's house and saw them for a little while.

They then left Grandma & Grandpa R's house and went to visit with Great-Grandma Vivian & Aunt Dawn. As you can see, Great-Grandma Vivian and Hope Vivian had a lot to talk about. Both of them really enjoyed their little visit.

Hope is becoming such a big girl. Today she did some finger painting. She thought it was fun at the beginning and played along. But....

As you can see, at the end of her paint session she wasn't feeling so artistic. At least she was able to make a finger paint turkey before her inspiration ran out.


In other news... Mommy & Daddy are still in contact with a surgeon to do Hope's cochlear implants and are hoping that next spring they can have them done.

Daily Dose: Monday, August 24

Hope is getting ready to go home!!!

Tomorrow is the big day!!! Everyone is ready and excited!

Hope had her ears checked today. They took her down to the OR around 9 am. A small incision was made in her ear drum and the ENT was able to drain a small amount of fluid off, nothing impressive. He noted that her ear canals are small and that the inner portions of her right ear appeared slightly abnormal. Upon finishing this portion, they repeated the BAER/hearing test. They performed the test two ways; by air conduction and by bone conduction. Hope did not exhibit a response to either mode. This leads the doctors to believe that Hope is deaf. This is difficult news to hear but not altogether surprising as she has not passed prior hearing screens. The good news is that the doctors think Hope might be a good candidate for cochlear implants. They performed a CT scan of her temporal bones this afternoon to see if there would be any obvious physical hindrance to the implants. We have not gotten the results back yet from this scan. In order for the doctors to consider the implant, Hope has to complete a 6-month trial with hearing aids. This is for several reasons; occasionally the hearing aids improve hearing more than they thought, plus, the implant would not likely be done until Hope is at least 1 year old. We will be contacting the hearing aid doctors tomorrow to get the ball rolling for this. We ask that everyone continues to pray for a positive solution for Hope's development.

This has been a trying journey at times, and today's news wasn't easy to learn, however, we are so blessed and so thankful that tomorrow we will have our beautiful Hope home with us. This joy is not to be diminished in light of today's news. We should all celebrate the amazing strength Hope has shown over the months. Tomorrow will be a joyous day!!