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Saturday, December 17, 2011

I will FIX you

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome.  If you haven’t seen it… here it is.  If you have – skip below. It gets better. 

 

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile.  She reminds me constantly that God’s plan is divine for each and every one of us.  She doesn’t need to “fix” her daughter.

 

 

I’ve been struggling these past few weeks with sorting this out.  I posted a little bit about this HERE.  This fall has been pretty brutal for Alexander.  4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures.  It looks like we may be headed for surgery in the near future.  We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.)  We have “classic WHS kidneys.”  - We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s.  We are also going to see an ENT to “fix” Alexander’s ear infections.  Probably we will have tubes put in.  That seems the most logical choice. 

 

Again. I will move mountains for my child.  I do not want him to suffer.  If tubes are needed, then tubes it will be.  If other surgeries are necessary, then those will be also. 

 

Our appointment on Friday was with the Neurologist.  *sigh*  This is where the “how much can I ‘fix’ Alexander?” eats at me.  His illnesses have caused him to fluxuate in weight gain.  He’s been growing longer and not chunkier.  He seems to have a loss in muscle tone.  Ok. He’s lost muscle tone.  But he has this increase in appetite.  SO…. I’m thinking that his dose of Keppra is making him a little “off.”  We switched to name brand (which controls better) and upped his dose. 

Should I ask the doctor to lower the dose a little?  To avoid the zombie – like state I’ve seen him spiral into several times?  What if he has a seizure then?  How can I help him? without needing to “fix” everything about him?

 

Usually I’m ok.  I can balance these dualities pretty well.  This past week I was not that fine.  I kept replaying my friends video and wondering if I was pushing too hard.  Especially when it came to the neurology visit.  Keeping the seizures away is our number one priority.  All else must take a backseat.  What if he just doesn’t have great muscle tone?  What if that is the price we must pay to keep the seizures away? 

 

Our visit went well.  We had a great talk.  We made some plans.  Alexander is going to have some good Omega 3’s entered into his diet.  I’m going to try to put some weight on him and see if he can “grow” into his dose. 

 

Still… I must tread with caution.  To help my son, but not need to “fix” him.  Something I will continue to ponder.

5 Comments:

At December 17, 2011 at 10:55 PM , Blogger jen@ living a full life said...

I hope and pray for a day when you can breathe easy and not have such a constant worry of such a serious nature looming over your head and over precious little Alexander all the time.
Prayers for peace to you my friend.

 
At December 18, 2011 at 2:54 PM , Blogger Heather said...

oh, such a struggle it is to find that balance... between doing all you can to optimize your child's chances for health, happiness, and success and loving and accepting them just exactly as they are. It helps me to realize that it is the same struggle we have with all of our kids - typically-developing or special-needs. The particular details are different, but the need for balance is there with all of my children. Even my typial kids will have struggles and disappointments that I will have to decide whether or not to jump in and "fix" for them. And some that I will not be able to fix. Parenting is hard any which way you look at it.

 
At December 18, 2011 at 6:52 PM , Blogger chrissyrivera said...

Kristen I still struggle with fixing Amelia. For the past year, my number one goal with speech was to work on feeding. Amelia has fought all of us when we try to feed her. Just last week I asked speech to stop trying food because she is not budging on this one. Maybe I will try again next year but for now, I will not to try to fix her but wanting her to eat. IT was me who wanted her so badly to eat and enjoy food! I have to constantly reevaluate what I am doing for her and what I am doing for me and who is going to benefit from the results. Thank you for the kind words about the video! Love you!

 
At December 18, 2011 at 8:05 PM , Anonymous Amy McCollister said...

I want to start off by saying that you and your friend both have absolutely beautiful families. I have a heart for those with special needs, I see the "fix it up" side of things all too often working in a group home with such clients. It makes me wonder why we focus so much on imposing our "normal" onto someone else who isn't "normal" in our eyes. The "fixing" mentality most have towards those with special needs gets to me. There are few things that warm my heart more than to see families and people choose to embrace the challenges that come with such trials. I'm not saying that there aren't days when you wonder, "is all the work worth it?" Or "am what I'm doing what's right for me or right for my child?" I am so glad to be able to connect with you. Am looking forward to the progress (no matter how small or large) that you continue to see (and praying you have the eyes to see even the smallest progress).

 
At December 19, 2011 at 10:17 AM , Blogger The Preppy Girl in Pink said...

Kristen, You have such a beautiful family. Alexander was brought into a home full of love and it shows in everyone of those pictures. Can I see sadness in your eyes? No, I only see love and I am sure that Alexander not only sees it but he feels it as well. You are doing all that you can as a mommy and family. I am so proud to call you a friend!
You are always in my thoughts and prayers! xo, the other Kristen

 

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