Hard work ahead 

Yesterday, we had our second post-operative check-up.  The first was shortly after her surgery to check the incisions and to get “the okay” to take her arm out of the sling.   The visit yesterday, which was 5 months since her surgery, was a visit that looked like what most of her visits in the future will look like.  (Sorry for that last sentence.  My brain must be in travel mode.)

I have no idea how I packed Vince such a worn pair of jeans. They will go straight to the farming basket when we get home.

In the room were 6 Vander Kooi’s (including Violet in her snazzy new hat), a nurse, a physical and occupational therapist, a student (who happened to be from Minnesota, had done her undergrad at SMSU in Marshall and had a sister-in-law from our hometown), and the two surgeons.  

 

There is so much excitement and energy within a Children’s Hospital.

 I have learned to always use my Voice Memo app for things like this. It is so nice to go back and hear the conversations again.  

Dr. Yakuboff began by checking her incisions.  At the site where they removed the scar tissue within her brachial plexus and did the transfers, on the side of her neck, there is still some swelling.  Three months ago, Ava tripped walking into a physical therapy appointment and we have never been able to make it completely go away.  He wasn’t worried about it as long as it isn’t sensitive to touch.   He also said to keep massaging all the scars. 

They had Ava show the movements she has gained.   I had sent some videos last week just in case Ava wouldn’t cooperate at our appointment.  They were very impressed!!  A few minutes of excitement ensued as they speculated which muscles were doing what things, and which exact transfer was equating to which gain.  They agreed most of her movement so far comes from the incision on the back-side of her shoulder when they transferred her spinal accessory nerve to her suprascapular.  

 

Our appointment wasnt until 1:00, so we went up 49 stories to the top of Carew Tower to see the city. it was cold and scary, but very neat.

 He then checked over her left hand.  He had Ava do all different kinds of movements to see if she lost any functions from when they stole her C7.  Checking any earlier wasn’t worthwhile as nerves within a child have the ability to fill in and branch out to bring sensation and movement to an area nearby.  Things looked great!   The only thing I notice is that she always uses her thumb and never her pointer on a touchscreen.   

I asked about the outcomes and progress of other children since we had initially consulted with them.  He deferred to his co-surgeon, Dr. Schwentger.  She reminded me that Ava’s case in unique and comparisons are really “apples and oranges” when comparing a birth injury to Ava’s traumatic one.  However, she said the kids who have had C7 cross transfers and have waited the time required for nerves to grow have all gained the ability to grasp.  That is really great news!  She did remind us though that they haven’t seen enough fine motor strength to do something like color with their affected hand.   I truly do think though that a little would be a lot. 

Then, the surgeons and student left, and we visited with the therapist.  I had hoped for more specifics from her, but she just said to keep working on things. She stressed the importance of 30 minutes every day of active work of the arm.  When combining this with the scar massage, it is overwhelming.   Ava isn’t ever very excited or patient about it, and she has to really focus if we are to get much out of it.  I have to spend a little time thinking about how I can make this happen on a regular basis. 

 

We enjoyed a meal at the cafeteria together. Ava has been hanging tight to Joe the whole trip.

 
The wonderful news is they are comfortable with what has been happening and feel that, given the distance between Minnesota and Ohio, we can wait 6 months until the next visit.  We are to call if she develops pain that causes her to be awake at night or chew on her hand. 

  
We are putting in 25 hours of driving time for a 25 minute appointment.  Joe claims that travel with our family will only get easier from here.  We have had lots of good times though.   

It is getting harder to get Violet strapped into her car seat each time.  Ava has been working on a sticker book and Liv has been challenging us to hangman games (it puts a whole new spin on the game when spelling isn’t a strong suit). Vince has been reading.  Joe says my navigating is a bit sub-par.  

We are going to stop in at my aunt and uncle’s home near Purdue soon.  We are so thankful for a great check-up and happy to heading homeward.  

Advertisements

8 thoughts on “Hard work ahead 

  1. Thank you for letting us know how the appointment went. It sounds so overwhelming, I don’t know how you manage everything. It seems like really good news and I’ll pray that you are able to find additional ways to encourage Ava to “like” the therapy. I don’t know that I’d be happy to go through that every day. God Bless You and Your Family.

  2. HI, I am a cousin to Sherry Newell. I live in Phelan, CA. A small town in Southern Cal. I have been following your blog ever since Ava’s
    accident happened. I want to wish you well and continued prayers. I am so happy that she is improving. I have great admiration for you, your husband and family. Your dedication and love is so wonderful.
    Blessings, Sherry Saxe
    (my maiden name is Newell, so heaven forbid there are two of us.)

  3. PTL for a good checkup. A little ice cream bribe goes a long way. Maybe even watching a movie or cartoon would distract her a bit.

  4. So good to hear the news of your visit! Thanks for sharing Rita. We thank God with you for the good report. (Nothing negative = positive!) Our prayers continue for Ava’s amazing healing! And of course for all of you as you grow as a family through this experience. Safe travels!
    Blessings!

  5. Good to hear the Dr’s report. Praying for a way to fit in the 30 minute thing – I’m not sure exactly what that would look like. Can it be worked into regular things? Or is it an exercise kind of thing? I could come and help with it if that’s possible and if Ava would let me – I know she doesn’t know me well. I’m serious.

    • I really appreciate it! At this point, we are trying as much as we can to squeeze 5 minutes here or there to lighten the load, but hopefully this week I will get an e-stim machine and that would be daunting especially at first. However, I will definitely keep you in mind as things will undoubtedly change over time. Thanks, Gretchen, you are a true friend.

  6. I just stumbled upon your blog by accident but I believe it was for a reason. I, too, have a child with a brachial plexus injury, but his was from his birth, from being 11 lbs. Please check out Dr. Rahul Nath, from Houston. He helped our son. I believe he can help your daughter. All Dr. Nath does is pediatric brachial plexus microsurgeries, and the type of surgeries he does depends on what type of injury there is to the brachial plexus, where the injury is located, and whether there has been prior surgery or not. He travels around and does evaluation clinics, and will have you do tests where you are and have you send the results to him, then if he thinks he can help you, will have you come to Houston for the surgery. His staff is wonderful! He is the best in the world at what he does! http://www.drnathbrachialplexus.com

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s