Great Summer

There hasn't been a lot of new things going on with Hope over the last month but definitely some very BIG things. On September 1st Hope had a bronchoscopy done. She was put under general anesthesia and her Ear, Nose and Throat doctor took a look at her airway. The main reason Hope got her trach was because her airway was under-developed (because she was born so prematurely). This is a condition that for most kids resolves on it's own over time.... and for Hope it seems it finally has! The doctor said her airway looks completely normal!

With this wonderful report we were able to take the next step toward getting the trach out. So a few days after the bronchoscopy we began capping Hope's trach. To do this we simply put a cap on the end of the trach which forces her to breathe through her mouth and nose. We started out just a few minutes a day and quickly added time with each day. The goal was to have the trach capped whenever Hope was awake. We made up to 8 hours and then Hope got sick. We weren't sure if it was a cold or if it was the same type of bug she had back in July so we started her on some antibiotics just to be safe (didn't want to let it get bad if it was the same thing she had in July). Unfortunately it meant we had to stop capping her trach for about a week.

Thankfully once she felt better we were able to start capping again and very quickly made it up to all day capped. Once Hope goes all day with her trach capped for three weeks then we will call her ENT doctor and schedule taking the trach out. As of today we are on day 5 :) For the most part Hope does great with it but because the trach is still in place in her airway it does make it more difficult to breathe than it would for the rest of us. She sometimes panics because it's hard to breathe but once she calms down or gets distracted she breathes normally again.

With just over 2 weeks left of capping we are hoping to be able to schedule the trach coming out yet this fall!

A summer of firsts

This has been a very busy summer for Hope. She has had many "firsts"....

HER FIRST VACATION/LONG CAR TRIP

A few weeks ago mommy, daddy and Hope packed up into the car and drove to North Carolina to see mommy's family. It was a 14 hour drive and it took two days to get there so Hope got to stay in a hotel and have a queen sized bed all to herself. This isn't her first stay in a hotel though (her first was last fall in Indianapolis). In North Carolina Hope got to see her cousins. She had met Cody and Allie before but she met Lily for the very first time. They were instant friends :)

Hope & Lily

Hope & Lily

Cody, Allie & Hope

Allie & Hope

She also spent some time with Uncle Corey, Aunt Kim and Grandpa & Grandma Holtz. It was a short visit but everyone had a wonderful time!

HER FIRST CAMPING TRIP

Just this past weekend Hope, mommy, daddy and Grandpa and Grandma Robinson all packed into the motorhome and went camping for the weekend at Mitchell State park in Cadillac. Hope got to ride around the park in her wagon and she watched people fishing and boating and swimming. She loved being outside so much!!

HER FIRST TIME IN THE SWIMMING POOL

While in North Carolina Hope got to put on her cute bathing suit (of course from Aunt Emily) and go into the big swimming pool. She stayed in the shallow end because she didn't want to get water in her trach but she loved floating and splashing in the water.

Splashing in the pool with mommy

Lounging by the pool after swimming

Hanging out by the pool with Grandpa and Cody

HER FIRST RIDE ON A CAROUSEL

One nice Saturday mommy and daddy had some errands to run so they took Hope along with them to the mall. While they were there Hope and daddy had a ride on the carousel. It was a lot of fun :)

Riding the carousel with daddy!

HER FIRST TIME ON REAL PLAYGROUND EQUIPMENT

While Hope was camping this weekend she rode past the playground many times. On the last day Hope and mommy decided to go down the slide..... let's just say it was a great idea.... in theory anyway. Mommy suddenly had a small fear of heights (yes the height of a playground slide) and couldn't figure out how to get seated with Hope in her lap.

Alright, we made it to the top, now how exactly to we do this? (Yes, that is grandpa peeking from behind. He climbed up to help. At one point daddy climbed up the front of the slide to help too.... that was a real kodak moment but the photo is on grandma's camera)

Whew, okay, we are ready to go!

Weeeeee - okay, maybe not as enthused as mommy expected
Oh well, mommy had fun :)

After the slide we spent some time on the swings but that was old news to Hope because this summer she got....

HER FIRST TREE SWING

Earlier this year Grandpa Robinson and daddy put a tree swing up for Hope. She loves it because she gets to be outside and swing much higher than in the little swing in her bedroom.

Playing with daddy in the tree swing

HER FIRST BIG-GIRL SHOWER

Up until this summer Hope took her baths in an infant bathtub that we filled with water and put on the floor of her bedroom. She had outgrown the tub for quite some time and she had taken a liking to splashing water all over the place so we had to line her floor with towels. As you can imagine this made bathing quite a task. This summer Hope got her very own bath chair. It fits into the bathtub and we can now give her a bath or attach the base to raise her up higher and give her a shower. Hope absolutely loves the feel of the shower water - she laughs and giggles the whole time!

And now.... one of the most exciting firsts of this summer is....

HER FIRST TIME USING HER VOICE

Because of the trach, Hope is unable to use her voice the way most people would. The trach allows her air to escape before it reaches her vocal chords. Well at the beginning of August Hope got a valve that we can put on her trach. This valve allows her to inhale regularly but then it closes when she exhales which forces the air up past her vocal chords and out of her mouth. It has been so wonderful to hear her start to learn to use her voice. Here is a video of Hope during one of therapy sessions :)

http://www.youtube.com/watch?v=_QX-AS7pKFE&sns=em

Update on Hope's Hospital Visit

Hope is still at Motts since her admission on Monday. She has had a lot of tests done and everything came back normal, which is good, but frustrating. Yesterday, neurology started a long term EEG. They are hoping to catch one of Hope's breathing episodes during the monitoring. The EEG could last over 24 hours and then after that they may do a sleep study. It looks like Hope could be there a few more nights, but hopefully that will help them find some answers.

Hope is very thankful for everyone's thoughts and prayers and she is doing her best to tolerate all the extra attention.

Hope laughing with her mom during her EEG

Hope's Hospital Visit

Hope could use some extra prayers right now. She is currently in Ann Arbor at the University of Michigan's Mott Children's Hospital.

As you know, Hope has been off the ventilator and doing fantastic breathing on her own! However, on Sunday morning, Hope had a little episode where she stopped breathing completely and had to get assistance from Mom & Dad. They ended up taking her to the Emergency Room, but she had stabilized by that time and really just enjoyed all the attention from the doctor's and nurses at the hospital. The doctor's said Hope could go home and gave instructions to "watch closely", as if that has EVER been a problem!! Clearly they don't understand we can't take our eyes off this cute little girl!

Then yesterday (Monday), Hope had another episode in the morning where she just wasn't breathing. So Mom got her back up and breathing, called the doctors (as well as Dad and Grandma & Grandpa R) and the doctors at Motts said they wanted to see Hope, STAT! So everyone loaded up the car and they headed down to Ann Arbor yesterday. Hope has been enjoying her hospital stay, loving the attention she is getting from everyone, being cute, per the usual. Unfortunately, the doctors needed Hope to stay overnight for monitoring. They aren't sure what is causing these episodes so they are running more tests today and hopefully we'll have some answers soon.

Keep Hope in your prayers!

Let's play a game

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)

Lots of progress

It is so nice that the weather has finally warmed up enough that we can get outside!! Hope loves to be outside! Now that she is free from the ventilator during the day it is much easier to go outside with her. Last year in order to go outside we had to switch her from her bedside ventilator to the travel ventilator, hook up a tank of oxygen, take her suction machine and travel bag and somehow figure out a way to take all of this outside with us. As you can imagine, we didn't make it outside any too often. This year it's as simple as plopping her in the wagon and heading outside. She doesn't need the oxygen or the ventilator and now that she's more stable we don't take the other bags outside with us. Hope just loves to go for rides in her wagon. She loves to feel the bumps and get the fresh air in her face.

Last Thursday Hope went to see her ophthalmologist. Normally when she goes the doctor quickly holds a few toys or other objects up in front of her face for just a second or two and makes a determination on her ability to focus, follow, track etc based on that. It can be a little frustrating because it takes Hope a little longer to process things. This time her vision therapist went with us to the appointment. Before the doctor came in the therapist got Hope all set up watching a simple vision therapy dvd (basically a slide show of some of the images the therapist has been working with Hope on). When the doctor came in he was able to see Hope focusing and watching the dvd. This was so very helpful! The doctor thinks Hope's vision is improving and he wrote her a prescription for lenses that are not quite as strong as the ones she has now.

The big news for Hope is that she continues to do well with her ventilator weans. She is currently on pressure support (this is where she has to initiate all of her breaths, the ventilator just gives her the pressure behind it) for 4 hours each night. We will continue to increase this every couple of days and once she is on pressure support all night we will begin to leave her off of the ventilator at night. We will start with two hours and increase every 3-5 days. Assuming all goes well the vent team at U of M are hoping to have Hope completely ventilator free by August when she sees them again. If at that point Hope is doing well we will get the blessing to see about taking her trach out! We weren't expecting them to suggest this until next year so this is a wonderful surprise. Once Hope has her trach out life will be so different! Go Hope! Go Hope!!

Happy Easter!

All smiles for our first outing this year

The last few weeks have been a bit rough around our house. First Andrew got sick with a nasty cold and then hope came down with a cold. At that point we had weaned her to the point of being off of the ventilator all day. Unfortunately the cold knocked the wind out of her sails and she needed to be back on the ventilator full time. She even got to the point of needing some extra oxygen to help her keep her oxygen levels up. Based on our past experience we were pretty well resigned to the fact that hope was likely going to wind up hospitalized because of this bug, however, her vent team at U of M was amazing! We kept in contact with them by phone and email and they advised us as to what to watch for and how to help Hope through this. Thankfully Hope DIDN'T need to be hospitalized! She is feeling much much better now and we are in the process of weaning her off of the vent again. This time it will be a much faster process than it was before because she has already been down that road (we are adding an hour each day rather than each week)

We hope that everyone had a nice Easter. Unfortunately daddy is sick again so he didn't get to go with Hope on her first outing of the year. As you all probably know we keep Hope on "winter lockdown" during cold and flu season. With her compromised respiratory system we just can take the chance of her catching something. This lockdown also includes not going to church with mommy and daddy on Sundays. Easter is the first time that Hope gets to get out and go to church again. She was all dressed up in her easter dress and very excited to see everyone. Everyone at church was very happy to see her! Since she wasn't on the ventilator she sat in mommy's lap for a few minutes but then since Aunt Emily was visiting she quickly snuggled in with her and took a nap through church.

After church Hope went to Grandma and Grandpa Robinson's house to have lunch. After lunch Hope dressed up in her bunny ears. Grandma Robinson had a bunny teeth sucker for Hope to dress up with too. The ears went over well..... The bunny teeth sucker? Not so much.

I haven't looked back through the old blog posts in a while now but I knew we had a post of Hope on her first Easter. I thought I'd post this picture just to show how far Hope has come. This was Hope's first Easter, two years ago...

All Day Vent Free!

Hope has made great progress on her ventilator weans. She is now off of the ventilator all day (even when she naps). She is still on it at night so she can rest without worrying about working to breathe. The freedom is so wonderful! (Now if the weather would just warm up already so we can get outside!!)

We went this past Thursday to the neurologist to follow up on the video EEG that Hope had a couple of weeks back. They determined that the jerking movements we were seeing are indeed seizures. This wasn't really a surprise to us - we fully expected to get that news. They've started her on a new drug that will hopefully keep the seizures from happening. So far it seems to have done the trick She's been on the new medication about 3 days now and we haven't seen the jerking movements at all. She will have a follow up EEG done in about a month to see if that shows that the seizures have stopped.

Moving Right Along

Yum - squash!

Loving being vent free!

Hope and Daddy hanging out

Hope has continued to make great progress with more and more time off of the ventilator. She is now up to 3 1/2 hours twice a day off the vent and today we will go up to 4 to 4 1/2 if she tolerates it. She loves being vent free and sometimes gets mad when we put her back on the ventilator. Like a typical 2-year old she will often grab the tubing, disconnect it and throw it on the floor!

Last week we went for a cochlear programming appointment. When they tested Hope's nerve response we found that Hope loves sound LOUD. The louder the test got the happier Hope got. She started out smiling, then giggling then outright laughing at the louder sounds! We tried her in the sound booth again (something we haven't done since she's had the implant). Prior to getting the implant when they put her in the sound booth and played sounds Hope didn't really respond at all. This time she laughed at every sound they played. What a remarkable difference!

February has been a month of many trips to Ann Arbor. Two weeks ago we went to U of M for a video swallow study. Hope had an appointment earlier in the day with her cochlear implant surgeon. He was happy with how everything looks. By the time we got to the swallow study though, Hope was ready for a nap and just wanted to sleep. She struggled with the swallow study. To do the swallow study they give her barium by mouth and watch on x-ray what happens. Since Hope was so sleepy she didn't do well with thin liquids. We are going to keep practicing with some thickened liquids and pureed foods and try the study again in the future to see if she will do better next time.

Hope was scheduled to have a video EEG done earlier this week but a snow storm kept us home instead. We will be rescheduling the test for sometime in the future.

For now we are all looking forward to warmer weather when we can get outside and run around without the ventilator! Hope thinks a tree swing sounds like fun!!

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!!