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! :)

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!

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!