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! :)

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

Daily Dose, Monday June 1

Hope Getting Her Back Patted

Peggy

Hope had a good day today - a little bit different from most days.

Hope was awake early this so she got to spend some time in her swing. Although she had a good time, she ended up falling asleep for a few more hours.

Hope woke up a couple of hours later and had a great afternoon- she was held and cuddled not just by mommy and daddy, but also by Peggy! Hope seemed to enjoy time with Peggy on her stomach while having her back patted. Hope just kept looking around the room , taking in the change in scenery for a while.

Hope weighed in today at 4170 grams, or 9 lbs 3 oz! She seems to be gaining weight consistently and rapidly now.

Hope's respiratory virus panel from 2 weeks ago finally returned results - it seemed Hope suffered from a virus called CMV. CMV is a common cold virus, and requires no follow up treatment. It looks like has officially kicked this now, and is feeling better every day!

Daily Dose, Monday May 25

Another good day for Hope. She spent most of the morning and early afternoon snoozing and saving her energy for playtime this afternoon. Once she woke up she sat and played with mommy and daddy for quite a long time. When she got bored with this she sat in her swing and played until after mommy and daddy had left.

Hope's blood gas was very good this morning. They decided to lower the settings on her ventilator just a bit and Hope tolerated this very well. She didn't have any episodes all day and was able to keep her heart rate and oxygen levels up all day long.

Hope had some special visitors today. Her friends Jody & Peggy Byland stopped by to see Hope. She was so happy to have visitors that she even opened her eyes and woke up from her nap.....for a minute.

Daily Dose, Sunday May 24

DADDY IS BACK!!!

Hope was very happy to see daddy again after 4 days of missing him. He cuddled with her for a couple of hours, and he told her all about his time in Boston. Daddy brought Hope a book about Wally, the Green Monster, and his travels through Red Sox Nation.

Hope also cuddled with mommy, grandpa R and spent some more time hanging out in her swing. She had fewer episodes last night and today. Hopefully these will continue to diminish in frequency and severity.

Daily Dose, Saturday May 23

Hope spent a good bit of the day sleeping and resting. Her bottom is still very sore so she lounged around diaper-less with the oxygen on the tush again. Hopefully since they stopped her antibiotics today things will clear up soon.

Once Hope did wake up, she was ready to play. She hung out with mommy, grandma R and granpda R for a while and then the real excitement started. Her nurse got her a swing to play in for a while. Hope wasn't sure what to make of this new vantage point at first. Her next mission was to figure out how and why she was moving without someone holding her...this was all very new and strange.

Hope weighed in at 3830 grams today - 8 pounds 7 ounces.