Monday, December 13, 2010

Happy Birthday & Yay Hope!

Ladybug Cookies

Hope trying some of the frosting from her birthday cookies

The HAPPY Birthday girl!

Daddy, get this off my head!

Celebrating Christmas with Grandpa & Grandma Holtz

Hanging out with Grandpa & Grandma Holtz

Opening her new Christmas tree ornament with Grandma

Snuggling with Grandma

Hope has been very busy these past few weeks.  She celebrated her very big 2nd birthday!!  She spent most of her birthday sleeping as she has been cutting an awful lot of teeth lately.  (And how many birthday girls wouldn't want to spend a wintery birthday snuggled warmly in their bed?)

She celebrated her birthday a little bit early with Grandma and Grandpa Holtz.  They spent a week visiting with her and she just ate up all of the attention!  She got to play and snuggle and celebrate both her birthday and Christmas early with them.  She doesn't think she's the least bit spoiled though.

On the day of her birthday she celebrated with Mommy, Daddy and Grandma and Grandpa Robinson.  She opened lots of presents and nibbled on some frosting from her ladybug birthday cookies.

On a medical note, we went to U of M on Wednesday to meet with a new pulmonologist.  We had gotten quite frustrated with the pulmonology office in Grand Rapids.  We were hoping that the doctors at U of M would agree with us that Hope was ready to be closer to getting off of the ventilator but they blew even us away.  They were surprised to see how high her settings were and they immediately lowered them.  They even took Hope off of the ventilator briefly to see how she would do - Daddy and Mommy were speechless! - Hope did great!  Starting right away we are going to start "sprinting" Hope.  This means giving her periods of time where she will do more of the work of breathing on her own - kind of like training for a marathon in little runs.  Right now the ventilator makes sure that she breathes 16 times each minute.  If she doesn't it will kick in and give her a breath.  Her first "sprints" will be to turn that feature off and make Hope do all of the breathing on her own.  She is doing this twice a day for two hours at a time (and doing fabulouslly with it!!).  Each week we will add an hour to each of the time blocks until she is doing all the breathing for herself.  Once she is doing that we will start "sprinting" her by actually disconnecting her from the ventilator for period of time.  We are so happy and excited to have this plan in place!! 


Tuesday, November 23, 2010

Hope's New Glasses

TA - DA!!!!!

Hope has her new glasses! We were supposed to pick them up last Friday but Hope hasn't felt well for the past several days. She has been cutting 5 or 6 teeth all at the same time and she was pretty miserable with it. So on Monday Hope, Mommy and Grandpa Holtz went and picked up Hope's glasses. Grandpa Holtz bought Hope some bling (a pink boa and a sparkly bracelet) to go with her new specs :)

Hope doesn't seem to mind her new glasses at all. It's hard to tell how well they are helping her but she definitely seems to be looking around more and trying to "look" at things. She doesn't try to pull them off like she does her cochlear implant - she must know how sophisticated she looks :)

Grandpa Holtz had to fly back home to North Carolina today and Hope misses him a lot but is really excited that both Grandpa and Grandma Holtz are coming to visit her next week.

Friday, November 12, 2010

Standing and Seeing

On Monday Hope's physical therapist brought out a device to help Hope stand up. We put shoes on her feet to help support her feet the first time she tried it and between the standing up and the shoes she wasn't too sure about the whole thing. She's tried it a couple of times more (without shoes) and seems to be getting more and more accustomed to the idea. This is a great way for Hope to strengthen her legs, ankles and feet. She seems SO tall when she is standing up in it!!

An artist cannot be told what to paint!!

This isn't a gruesome as it looks. Hope was finger painting a pumpkin cutout with her therapist this week..... Well that was the intent anyway. Hope thought it would be a better idea to paint herself and she covered her chest, belly and face in orange finger paint. A little bit did make it on to the paper... one of Hope's new masterpieces :)
Hope went to see her eye doctor on Tuesday and he wrote a prescription for Hope's first pair of glasses. She went on Thursday to try some on and pick out the perfect pair. Keep an eye out in a week or so for a peek at her fashionable new specs!

Saturday, November 6, 2010

Happy Halloween

So I'm sure everyone is wondering what Hope dressed up as for Halloween.  Well....... A Ladybug of course! :)  Actually she had her pick from several costumes - a bee, a flower, santa claus, a witch....but the ladybug costume fit just right!  :)  She didn't go out trick-or-treating but is looking forward to doing that someday when she is off of the ventilator.


Thursday, October 28, 2010

Sleep Study Update

Hope's sleep study went very well. When we arrived we were asked what time Hope normally goes to sleep. She normally doesn't go to bed until somewhere between 10pm and 12am. She sleeps about 6-8 hours each night and then takes an hour or two nap in the afternoon. This kid doesn't need much sleep. The technician wanted to capture 6 hours of data and so they wanted to put Hope to bed sooner than her normal bed time. At about 8pm they started hooking up all the electrodes and so Hope really couldn't get out of bed after that point. She is used to being cuddled and rocked before her 10pm bedtime so she didn't like not having that.

She cried and whined until about 11 pm and then fell asleep about 12am. They turned her oxygen off and turned her vent pressure down from 12 to 8. Hope didn't even notice. We figured that in order to get all the data they wanted we would be staying the full time (until 7am). Hope had a different idea though. At about 3am Hope woke back up. We tried to let her fall back asleep until about 4am at which point they decided to end the study. They felt they had plenty of "proof" that she did well with everything, so we packed up and headed home.

We haven't heard from her pulmonologist yet to formally discuss the study but they paged the doctor and they were comfortable sending Hope home on the reduced settings. We don't know what the official plan is from here but the next step is to schedule a bronchoscopy for Hope to see if her airway is less floppy than it used to be.

Monday, October 25, 2010

Hope's 300th Blog Entry

In honor of the 300th post on Hope's blog, I decided to post some recent pictures of the cutiepie herself. Please, brace yourself, there is about to be a cute overload!!!!

Hanging out with Great-Grandma

Hello, I'm waiting for some food to taste

Hope's Mommy put some of Grandma R's applesauce on Hope's tongue... her eyes got HUGE and then....

Super big smile. She LOVES the applesauce (rightfully so)

The. Cutest. Girl. EVER

I think this was mid "bouncey bouncey"

She just doesn't stop smiling

Aunt Em, you are so funny!

Hope is SOOO big

So much fun and cuteness... Hope must sleep

Tuesday, October 19, 2010

Sleep Study

Hope is in the middle of a sleep study as I type.... although as you can tell from the picture, she's not so keen on the sleeping part of the sleep study. Truth be told, she's not so keen on the entire idea of a sleep study. The black band on her head is covering the 10-15 electrodes that are stuck all over her head. She's had them on for about 2 1/2 hours and has just recently stopped crying about the whole situation.
The point of the sleep study is to lower her ventilator setting and see how she does. They've lowered her PEEP (the pressure that is in the circuit when she exhales in order to help keep her airway open) from 12 to 8 and she is doing great with it. They've also turned off her oxygen and she is doing great with that change too. Now if we could just get her to sleep.... :)

Thursday, September 16, 2010

Hope took her first vacation this past weekend! On Friday afternoon Hope got packed up with all of her equipment and headed to Indianapolis with Daddy, Mommy and Grandpa Robinson. This is the longest car trip Hope has ever taken.
On Saturday we all headed over the Riley Children’s Hospital for their annual NICU family reunion. Hope got to see several of the doctors and nurses that took such good care of her shortly after she was born.

Hope with Daddy & Mommy at the NICU reunion

Nurse Deb!

Dr. Allen!

On Sunday morning Hope visited the church that Mommy, Daddy, Grandpa R and Grandma R often went to when they were in Indianapolis. This church is MUCH bigger than the church she normally goes to and the pipe organ was MUCH louder so we took her cochlear implant off for much of the service.

After the long drive home Hope was exhausted and so very happy to stretch out in her own bed. She fell sound asleep the minute she got home. All in all it was a very successful trip!

On another note – Hope has continued to travel to U of M for regular cochlear programming appointments. They have continued to increase the volume on her implant as she continues to adjust to sounds. She seems to enjoy hearing sounds although she continues to try to pull the implant coil off of her head. She loves to pull it off and laugh when someone puts it back on 

Friday, August 27, 2010

One Year at Home

Hope tucked in for the night

It's so hard to believe, but Hope has been home and out of the hospital for a year now. It has been a wonderful and adventure filled year that included:

* Weaning off many of her medications. When she came home from the hospital, she was on about 50% more medications than she is now. She needs half the breathing treatments that she was getting when she came home.

* Seeing fewer doctors and seeing the ones she does still need less often. Hope no longer needs to see the neurologist and she sees her kidney doctor, urologist, developmental pediatrician and ear, nose and throat doctor only twice a year.

* Getting into a real bed time routine and sleeping through the night. It was a long time in the making but Hope now sleeps through the night. Since she has a nurse with her at night she often thought it was playtime whenever she wanted. Now she has a solid bedtime routine and knows when it's time to go to sleep.

* Lowered ventilator settings. Although it's been slow progress Hope has made steady progress this summer getting her ventilator settings lower. She hasn't struggled with the lowered settings at any point and we continue to shoot for getting rid of the ventilator all together.

* Lowered oxygen. When Hope came home she was still experiencing the occassional desat episodes that scared us so many times in the hospital. She hasn't had one of these in many many months and is on only a trace amount of oxygen (and really doesn't need that).

* Growing big and strong. Hope was measured today and is 30 inches long! She's growing longer and leaner every day.

* Staying healthy. Hope only had one re-admittance to the hospital. She was able to stay cold and flu free all year!

... And one of the big accomplishments of the past year.....

* Hope can hear! Having the cochlear implant done in July and activated last week, Hope has done really well adapting to hearing.

It has been such a wonderful year. We all feel so blessed to have Hope home with us each and every day. We are looking forward to the many accomplishments of the next year!! :)

Wednesday, August 18, 2010

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.)

Wednesday, July 21, 2010

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!!

Saturday, July 3, 2010

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!

Wednesday, June 23, 2010

Hope's Tribute to Father's Day

Hope wanted to show everyone about all the special fathers in her life since she only was able to spend time with Daddy and Grandpa R on Father's Day.

Hope and her Daddy

Hope and Grandpa R (spending quality time after Grandpa R's long trip)

Hope with Daddy and Grandpa R

Hope with Grandpa H (a few months ago)

Hope with Mommy and Great-Grandpa H

Hope and Great-Grandpa H

Hope especially wanted to include pictures of her and Great-Grandpa H. Sadly, Great-Grandpa H passed away yesterday, but Hope is soooo glad that she got to meet him a few times while she was still in the hospital and that they got some good pictures together that she'll be able to look at when she gets older.

Friday, June 11, 2010

Daily Hope: Friday, June 11, 2010

Hope is doing great! Her vent rate was weaned to 31 and she has been doing very good with it. Today Hope, along with Mommy & Daddy and Grandma R., are in Ann Arbor for Hope's final pre-surgery visit. Hope will be meeting with the surgeon for her final consultation before her big day in a few weeks.

As you can see from the picture, Hope is figured out how to grow tall!! She is now 28 1/2 inches tall! Grow Hope Grow!!

Tuesday, June 1, 2010

Hope loves to jump

Hope has discovered one of her favorite things to do is jump up and down. It started with one of her therapists helping her to jump while they were sitting on the floor. (Obviously Hope needs a lot of help with this and it basically amounts to lifting her up and bouncing her off of her feet on the floor like she is jumping). She just laughs and smiles ear to ear when she does this. Well, since Hope is over 26 pounds now you can imagine that your arms tire long before Hope does, so Hope now has a doorway jumper to help her with this activity. The first time she tried this out she kind of just hung out not really sure what to do. Yesterday, however, was a different story. Here's a video of Hope in her jumper. She did this for over 45 minutes!! She hasn't quite mastered getting off of the floor yet but she sure is trying!!

Monday, May 24, 2010

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!