Major Progress!

Hope has made some amazing progress in the last few weeks! A little over a week ago we went to U of M for Hope to have a feeding evaluation. Since Hope is on the ventilator, eating by mouth would require some extra coordination beyond what is typical. The vent is pushing constant air pressure into her throat and lungs and in order to protect her airway when she swallows Hope needs to put forth extra energy. Because of this the biggest concern for her eating by mouth while she is on the ventilator is the risk of her now swallowing properly and getting food/fluid into her lungs. At U of M we thought they were going to do a full swallow study but they didn't. Instead they dyed some plain water blue and gave Hope a small amount from a spoon. Afterward we suctioned her trach to make sure she didn't take it into her lungs. No blue came out so that was a great sign. Next they dyed some applesauce blue and gave hear a small amount from a spoon. Once again we suctioned and once again - no blue! Yay Hope! Because she did so well with these "unofficial" tests Hope was given permission to have a small amount of water and pureed foods by mouth each day. We will go back to U of M in February for an official swallow study and depending on how she does we will see how much she will be able to start eating by mouth.

That is vey exciting progress but it is nothing compared to the progress Hope made yesterday.

We had been waiting for some blood work to come back before we made any more progress on weaning the ventilator settings. The blood work came back this week and it was perfect! Onward with the vent wean! We got the email with the wean order yesterday morning and we were so happy and excited at what the next step was. Hope was going to be OFF the ventilator completely for 20-30 minutes twice a day!!!

Yesterday evening we tried it for the first time. We disconnected He and turned off the ventilator. We have gotten VERY accustomed to the sound of the ventilator just being part of our everyday sounds so when we turned it off the silence was very very eerie. Hope was tube and wire free for pretty much the first time in her life! It was so exciting.

Look - no tubes!!!

Running through the house - just because we can!

Yay Hope!!

Merry Christmas & Happy New Year!

Hope & Daddy seeing what santa left in Hope's stocking

Well the tree is down and the new year has been rung in. Hope had a great Christmas. She started out Christmas eve by going to visit her Great Grandma Anderson. The family all had lunch together and then great grandma opened her Christmas gifts. Afterward Hope headed to her Grandma and Grandpa Robinson's house where she opened her Christmas gifts. Hope wasn't interested in the oyster soup that grandma and grandpa were having so she took a nap while everyone had dinner. After dinner Hope went to church for the Christmas eve service. That was such a long day that Hope went straight to bed when she got home from church. (it was partly because she was so tired and partly because she was wanting Santa to visit her). Bright and early Christmas morning Hope woke up to find that Santa had visited her in the night. She enjoyed opening her presents much more this year than she did last year. Unfortunately Grandpa Robinson and Great Aunt Dawn were not feeling well so everyone couldn't get together for Christmas dinner like they had planned. Instead Grandma Robinson and Aunt Emily came down and had lunch with mommy, daddy and Hope.

Hope's ventilator weans are going very well. Hope is almost to the point of being on pressure support all the time that she is awake (where she has to initiate the breaths, the ventilator doesn't do it for her). We will be contacting the vent team at U of M soon to find out what the next step will be. Go Hope!!!

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 