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!!

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!!

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.

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!!

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!

Happy Birthday Hope

Hope sleeping on her tummy

HAPPY BIRTHDAY HOPE!!!

Today is Hope's 8 month birthday. She spent the day chillin' on her new home ventilator. The day went well and we now have one more day down on the 2 week count down.

Hope got her Kid-Kart today. This is a special order, custom cart for Hope that will allow her to travel with all of her equipment. This will make it much easier for daddy and mommy to get her to her doctor's appointments and such but will also allow her to venture out into the yard to get some fresh air.

Daddy and Mommy finished up their CPR training today. One more thing checked off the list of things that have to be completed before Hope comes home!!

Thursday is the big day! They are putting Hope onto the home ventilator around 8 am Thursday morning. Hope needs to be on the home ventilator for 2 weeks before she'll be allowed to go home. We are all praying very hard that the two weeks go very well and that she will be cleared to go home.

After reviewing the growth charts with Hope's nutritionist it looks like Hope is at exactly the right weight. She's a tad shorter that she should be at this point so they are going to add some extra protein to her feedings in hopes of getting her to grow a little bit longer.

Daily Dose: Tuesday, July 28

Hope has new ventilator settings and a longer trach, but they don't seem to have been the miracle cure as she still had several episodes today.

Hope is now also having a nutritionist in her life. Her current feedings are going to be evaluated because she seems to be getting hungry before her feeding times so they might need to increase the amount she is getting each time. Also... Hope has gained a bit of weight, possibly even though we want her to gain weight she is a little heavy now for her length and is getting, well...... chubby (however chubby babies are cute). The might need to reduce the amount of the supplement they are giving her but her weight is now over 13 pounds!!!

Daily Dose: Sunday, July 19

Hope had a good day today. She still had a handful of episodes, but not as many as yesterday. She enjoyed the day, spending lots of awake time playing with Mommy & Daddy. Hope's ventilator settings were increased slightly yesterday and her inhalers were also increased and changed. She is tolerating these changes well so far, and hopefully they will be helpful. Tomorrow we are hoping to hear more on getting the bronchoscope scheduled.

Hope is getting very big. She is now 22 inches long!!!! That's 10 full inches longer than when she was born, almost twice as long!!! Grow Hope Grow!!!!

Daily Dose: Wednesday, July 8

Hope had a rough night last night and her morning was a bit rough as well. Yesterday, the doctors weaned Hope's ventilator settings down quite a bit even though Hope had an increased number of desats. The wean apparently went too far for Hope's pleasure because she had 50 events between 8pm last night when Mommy & Daddy left and 10am today when her ventilatory support was raised- 50 events is the amount that the computer can store. After her settings were raised, Hope did much better, but still had a few events because her respiratory reserves weren't quite caught up.

Hope was much more pleasant and far less agitated today. She had a very very large #2 (poop) last night that made her much more comfortable.

As you can see from the picture, Hope is still getting the "glove" treatment, and no one is very happy about it.

Daily Dose: Tuesday, July 7

Happy 7th Month Birthday Hope!!!!

Other than the usual birthday celebration, Hope had an okay day. She was a bit restless and agitated most of the day, which ended up being caused by some constipation since she hadn't pooped all day long!!! I personally can't blame her for being uncomfortable. The doctors are still very happy with her blood gasses and how they are progressing so they weaned down her ventilator support a little bit more today. We pray she will continue to do well with this weaning practice.

Daily Dose: Monday, July 6

Hope had another great day today. She has been weaned down on her ventilator settings again and seems to be tolerating it well so far.

Hope only got one dose of tylenol last night and one dose today but seems to be feeling better. She doesn't appear to be in much pain anymore which is GREAT!!!

Daily Dose: Monday, June 29

Hope had a good day today- her blood gasses were so good the doctors decided to wean her respiratory settings. We are hoping that Hope will tolerate this well and begin weaning again.

We don't have a firm date for Hope's next surgery yet but will probably be sometime next week. Hope has continued to be an all-star with her feedings. She has now been cleared for 20mls in her bottle now. The plan for after surgery (and after she begins eating again) is to get her to the point she takes as much as she wants from the bottle, which Aunt Em thinks will be the entire bottle. This is great progress!!!

Tomorrow is the BIG MEETING with everyone involved in Hope's care, including the home nursing staff, home ventilator staff, etc. We are looking forward to good news on when Hope will be cleared to come home.