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! :)