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!! 

HAPPY BIRTHDAY & YAY HOPE!!

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.

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!

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.

HAPPY HALLOWEEN!!

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.

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

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.... :)

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 

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!! :)

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.)