Friday, September 14, 2012

Avery's Story...A Year Later *Update*

The girls are now 3 years 7 months. When Avery turned 3 she could no longer receive speech therapy (their program won't offer services to anyone over 3).  They turned us over to the school district, who stretched her "disability" to get her in a special education pre-school program there.  

Now, I am not one to constantly stressing Avery's "disabilities" because I know she able to do anything she puts her mind to and frankly if I didn't tell you she had hydrocephalus you would never know. It turns out the facility wasn't the greatest and wouldn't accept her twin sister.  After discussing the findings with her therapist (which we all agreed they were really stretching) I decided to keep her out of the program for now and home school the girls for the next 2 years.  I have the opportunity to change my mind at any time.  Fortunately, Avery's speech therapist and I remain in contact.  She has a daughter, so we get together for play dates.  She said she could monitor her and if she saw any red flags she would let me know but the girls already know everything they would learn in pre-school and I can socialize them with other activities. 

On the health front we had several shunt failure scares over the past year.  Shunt failures are so scary especially with the signs of a failure being so close to illness...most common symptoms of a malfunction or shunt infection being headaches, fever, vomiting, lethargic, irritable, periods of confusion and redness around the shunt line for an infection.  So anytime I have a hard time waking and keeping her awake with sudden vomiting I am on the phone with her neurosurgeon to let them know what is going on just in case we find ourselves in an emergency situation.  It is better to be safe than sorry.  When there is a malfunction and her shunt isn't working properly her brain is pressing against the skull and obviously that is when brain damage can occur so time is of the essence. 

In this last year we also discovered that Avery has moderate to severe hearing loss in one of her ears.  It couldn't be determined if it had anything to do with her hydrocephalus or any of her shunt surgeries.  She now has a hearing aid, which she took to right away.  She calls it her princess earring and proudly models it for you. wink  

Let me tell you there are A LOT of politics around the hearing aid.  It was recommended to us to see a doctor in Denver at the hospital the girls were born to address the hearing loss.  So that is what we did, she had yet another CT scan and it was determined that the hearing aid is the solution.  That is where we received the hearing aid.  Okay so let me tell you, IF you find yourself in the situation of needing a hearing aid -- Find a clinic in your town!  Tubes constantly have to be replaced, fine tuning needs to be done on the hearing aid, new ear molds needed etc etc etc.  I tried to take her hearing aid into a clinic in town to get the tubing fixed and they turned us away (not so nicely) because we didn't get it there.  I wasn't aware of how often we would need to go in for adjustments OR the fact that no one else would help us.  So that has been our new adventure.  Between glasses adjustments and hearing aid adjustments we are always in getting something fixed. wink One of the times we were down in Denver for Avery's hearing aid we ran into her neurosurgeon, who came over to ask what was going on that she hadn't received any messages.  She is so sweet smile 

Every day leads us into the unknown but for a child that I was forewarned she might never walk or talk, let me tell you she is fantastic.  We just got in from playing some soccer in the backyard and after MOPS today she was talking up a storm about everything they did with the kids. smile I feel blessed every day for having the girls. It is so exciting to see them blossom and grow into the little girls they have become.  A couple of weeks ago we attended our 4th Hydrocephalus Association Walk.  It is always inspirational!  Walking for a cure....A that would be awesome and answer my biggest prayer!!!


Thank you for sharing this update with all of us Stacey!  You're an amazing mom, and those are some pretty fantastic little girls you have there.  You are all inspirational.  xoxoxo

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