Hope is FOUR!!

Hard to believe it, but Hope turned FOUR last Friday!!  Hope is having a really great time being a big sister to Lydia.  They like to snuggle together, and Hope is getting used to someone else being around.  Hope is still going to pre-school two days a week and she thinks it is the best thing.  Ever.  She has really great teachers and she has lots of little friends in class.  They are all very excited to see each other when they get to school.

On her birthday, Hope got to go out to dinner, a buffet dinner, where she could try lots of different foods.  She tried apple sauce, jello, banana pudding, mashed potatoes, ice cream and cream cheese frosting (off the top of a red velvet cupcake).  She also tried cotton candy, and she REALLY liked that.

Hope loves being a big sister.  Mainly because she has a new cuddle buddy.

On her birthday, Hope got to try a lot of new foods.  Cotton Candy was a fast favorite!

One of Hope's cute birthday presents.  Of course it has ladybugs on it

Hope is a giggly girl and she loves to laugh!

Before this picture was taken Lydia was trying to eat Hope's cheek.  Shortly after this picture was taken, Hope decided she wanted to take a bite out of Lydia's head.  Clearly they are best friends.

Hope is a big sister

Hope is really proud to announce that she is a big sister!!

Lydia Dawn was born Tuesday, November 13 weighing in at 7 pounds 4 ounces. She is healthy and beautiful. Mom is doing well and everyone is set to be discharged home today.

Hope is very excited to be a big sister and to have a snuggle buddy.

Big Things for Hope

Hope has had lots of exciting things happening in her life. The first big announcement is that Hope is going to be a BIG sister!! Hope is looking forward to meeting her little sister in November. Everything has gone really well so far. Hope is also looking forward to being able to sit on her mom's lap again!

In September, Hope started school. She goes to pre-school at the Primary Center two mornings a week. Hope LOVES going to school. Really. She is all smiles. It has been really nice for Hope to meet some friends her own age. Hope has friends at school and her teachers are great!

Hope had a busy summer. She loves to be outside and, apparently, has become a big fan of camping. Hope was able to go with her mom and dad, and Grandma & Grandpa R, on a long camping trip to the U.P. in July. She also went camping at PJ Hoffmaster State Park in June and had a great time there too.

Hope was especially excited that she got to see her Grandma & Grandpa H two times recently. Along with her Aunt Kim and her cousins from North Carolina for a few days. It was a lot of fun!

Hope always has something exciting going on but that's all for now. Just thought we'd share a little bit of Hope's life this fall. She is growing all the time but still the cutest little Hope in the world.

Long overdue update

In some ways, the fact that this blog doesn't get updated very often is a very good thing. It was started initially during the days when we weren't sure if Hope would be with us the next day. That was a time of sometimes hourly tests and procedures and life-threatening surgeries and illnesses. We counted the time by the hours not days. We counted her weight by grams not pounds. We fed her only a few milliliters not ounces. It is so good to be in a much calmer place than those days. I know I am certainly thankful for it.

That being said, it has been a long time since the last update. Truthfully, not a lot of big things have happened since then.

We met with her ENT to discuss the options for getting the trach out. Basically, all of them involve surgery. The options include (in no particular order):

1. Using absorbable plates to "stabilize" her trachea. These plates are normally used in kids with facial bone fractures. The plates would be absorbed (much like absorbable stitches are) with the hopes that scar tissue would form around them permanently strengthening her trachea.
2. Using cartilage from Hope's ribs to "stabilize" her trachea. This is a procedure that is often done but is rather invasive. There would be the incision to her airway and also an incision to her abdomen to retrieve the cartilage.
3. Some combination of 1 & 2 - using both absorbable plates and rib cartilage.
4. Removing the "floppy" portion of her airway and reattaching the ends (from where the floppy portion was removed) together.
5. Leaving the trach in. At this point we assume that Hope has outgrown all the floppiness that she can outgrow and this floppiness comes from actually having the trach so it is unlikely that time would solve this issue.

We have preferences among this list but our biggest issue comes from the fact that her doctor/surgeon has never actually done these procedures. He's used the processes in other surgeries (facial surgeries) but never on an airway. Our plan as of right now is to get a second opinion from Cincinnati Children's Hospital as they appear to be "THE" hospital to go to when it comes to airway reconstruction.

Recently, Hope has also been seen by an orthotist and now has some AFO wraps (braces) for her legs/ankles. As you can tell, she loves them..... ok, not really.


At least she was able to get them in pink with pretty butterflies on them. She doesn't have to wear them all of the time, which is good because at this point her tolerance of them is about 6 minutes. After that if she isn't good and distracted she has a major meltdown. The reason for her wearing these (and the reason she hates them) is because of her Cerebral Palsy she has a tendency to point her toes and keep them pointed. At this point she has great range of motion but if she were to keep her toes pointed all of the time the muscles and tendons in the back of her leg could shorten and that would make it extremely difficult for her to NOT point her toes.
After we picked up the braces from the doctor we headed straight to the shoe store and got Hope some spiffy new shoes that fit over her braces. In my opinion with the shoes on you can't really even tell that she is wearing the braces. She wholeheartedly disagrees with me. She can tell perfectly well :)

On a happier note for Hope, the beautiful warm weather (it was almost 80 here yesterday!) means that she gets to go outside and play more. Yesterday we put her tree swing back up and she played in her swing until she fell asleep. All that sun and fresh air wear a kid out. She is napping right now but I think the plan is to go for a wagon ride once she wakes up! :)

Not Ready Yet

Well, this week hasn't gone exactly according to plan. Late last month Hope's trip to Ann Arbor to get her trach out was rescheduled from January 12th to January 9th so bright (well actually really dark) and early on Monday morning we (Hope, Grandma Robinson and Mommy) packed up the car and headed to Ann Arbor. Hope was scheduled to check-in to pre-op at 9am. They took her back into pre-op around 9:45 and then back to the operating room around 10:15. By 11:15 she was in recovery and we met with her ENT dr. He said that he removed a piece of scar tissue from her airway and after he did that her airway looked perfect. He was ready to proceed as planned - cap her trach overnight, observe her and if she did well then on Tuesday morning we would pull her trach out.

A few minutes later we were able to join Hope in the recovery room. She was pretty groggy and was slowly coming out of the anesthesia. The recovery room nurses worked on getting her ready to go to her room in the ICU, but when they called up to the ICU they said they didn't have a room available at the time. They weren't sure when they would have one. Since it was likely going to be a while the nurses got a dvd player and some movies for Hope to watch.

Hope watching a dvd

Since the bronch looked so good the next step was to cap her trach. After a couple of hours of waiting in the recovery area her doctor came by and decided to cap her trach before we got to a room (since it was taking so long). It didn't go well. Once they capped the trach Hope started struggling to breath. She has had her capped for many months at home now and her doctor thought she might have been struggling because her airway was swollen and irritated from the bronch. They took her trach out and looked at her airway with a scope to see if a clot had formed from taking the scar tissue out but the airway looked good. They decided to give her some time and try the capping again later.

Well, 10 hours after arriving in recovery, yes, 10 HOURS - we finally had a room for Hope. Because she was being observed in the ICU we were not allowed to be with her while they settled her in the room, we had to wait in the waiting room. About 10 minutes later we were allowed to go into her room and when we arrived her nurse told us they had tried to cap her and that "she had failed". We were livid! We were not told they were going to try to cap her at that point, we were not allowed to be present and the nurse and respiratory therapist who did the capping did not know about any of Hope's issues (she struggles sometimes with the capping if her head is not positioned well). After getting very irate with the nurse the doctor was called and we tried capping again. This time Hope did well with it and continued to do well the rest of the night.

In the morning we talked to the doctor and he was comfortable proceeding with the trach removal. A short while later several doctors surrounded Hope's bed and removed her trach (this is a non surgical procedure where the trach tube is simply unhooked and removed). Hope immediately began to struggle and panic so the trach was put back in. We believe that this was partly because Hope was not ready to have it out and partly because she felt frightened and agitated in the situation.

In any case, the doctor is not comfortable with the trach being out yet. He thinks that while her airway looks perfect perhaps the exterior structure of her trachea is weak. We are meeting with him on January 27th to discuss what the next step will be. He says that ultimately getting the trach out is still the plan. We will keep everyone posted.

Hope and Daddy

Big Days and Delays

Well Hope had a big day last week - she had a birthday and turned 3! She celebrated with a bunch of helium balloons.

Also Party hats and noisemakers. Everyone shared a meal of Hope's favorites which included squash, green beans and applesauce.

She got lots of gifts and cards. It was a great day!

As you know Hope was supposed to go to Ann Arbor on Monday to have her airway evaluated and hopefully get her trach out. Well Hope, mommy and Grandma Robinson were all packed and ready to go when the phone rang. It turns out that the doctor that was going to do the procedure had gotten injured and was unable to do the procedure. We have now been rescheduled for January 12th. This was a but disappointing but the silver lining is that Hope gets to continue to see her nurses each night for a while longer. This will also give Hope a couple more weeks to get even stronger and hopefully there is that much more chance of things going successfully.

Hope is still staying (with Mommy and Daddy) at Grandpa and Grandma Robinson's house while her house is being added on to. Hopefully the construction will be all done in January.

Hope is planning a big trip in a little over a week. Hope is headed to North Carolina to see Grandma and Grandpa Holtz, Uncle Corey, Aunt Kim, Uncle Jeramy and her cousins Cody, Allie and Lily. Hopefully the roads are good for the long trip!

Big days ahead

Well there are a couple of big days coming up. The first is Hope's birthday - she will be 3 this year! It's so hard to believe! The past three years have been quite an adventure!

The other big day coming up for Hope is December 12th & 13th. On December 12th Hope will be going to U of M to have a bronchoscopy done. Assuming this goes well they will admit her and then cap her trach over night. If she does well with her trach capped overnight then...... HER TRACH WILL COME OUT THE NEXT MORNING!! :)

The doctors will observe her one more night and if she does well Hope will get to come home trach-free!!!!

Hope has been on a bit of an adventure lately. Her bedroom is getting a bit bigger and we are adding a nice large bathroom with a large shower that can accomodate a wheelchair. In order for all of this to happen Hope, Mommy and Daddy are staying with Grandpa and Grandma Robinson while the messy part of the construction goes on. Last week we packed up Hope's bed and toys and headed down the road.

Even though she had to bundle up, Hope still thought it was so much fun because she got to be pulled in her wagon....

Behind the trailer, which was being pulled by the lawnmower!!!

Believe it or not, Hope was not a ladybug for Halloween!! Ok, it was really Mommy and Daddy's fault for not getting into Halloween this year. As a last minute effort Hope dressed up in her suit that had ears on the hood. Mommy drew some whiskers on her face and gave her a little red nose. Everyone decided that mommy should definitely not become a makeup artist!

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