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Tuesday, October 28, 2008

The good the bad and the ugly.


Things have been busy around here lots of appointments and tons more to come. Just before we went to Montreal Elizabeth had her second MRI. The second MRI was done under a general anesthetic and as it was done at the children's hospital they were able to see more. The MRI showed cerebellum atrophy which correlates to her Ataxic symptoms. Her Developmental Pediatrician is fairly sure with the new results that Elizabeth has Ataxic Cerebral Palsy. Her diagnosis does not change what we are currently doing but may help with getting help when she begins school. Even with the new results Elizabeth still has to be seen by Genetics and have an EMG done to rule out other diagnosis'. The good news Elizabeth is over 30lbs and in the 25% for weight which is great. The bad is Elizabeth's reflux has not been getting better and we are still needing to increase her meds therefore we will see Gastroenterologist to look into her reflux again. Another bad Elizabeth also had her Echo done and she still continues to have an irregular heart rate so she needs to see a Cardiologist as well. To add to her appointments and horrible tests Elizabeth needs to have a VCUG and a renal ultrasound as she is still having bladder infections and is complains of back pain. The ugliest is the Dr's concern with Elizabeth's lack of eye contact and some odd behavior's she is having. We are going to work on eye contact and see her Developmental Pediatrician in 6 mths and hopefully we won't be adding to her list of diagnosis'.
Sometimes I think he time we spent in NICU was a easy compared to everything that we go through as a family now, it should be getting better now not worse. It seems like she is never out of the woods.

7 comments:

liz.mccarthy said...

Thanks for your post on my blog, it seems that both our posts are fitting at this point, sorry about all that LIzzy is going through and you are right, the NICU was "easy" compared to not knowing this life-long affects. I'm a HUGE beliver in making NICU's do a better job of preparing micro parents for what to expect once the "honeymoon" of departure is over....♠

twinmama said...

Oh, I'm sorry that you're going through all of this, especially after such a great and productive trip to Montreal. Keeping you in our thoughts.

Shannon said...

Oh how I totally agree with you. When I look back NICU was a breeze compared to the time Ashton has been OUT of NICU.

You always think that you are prepared and nothing new is coming and then BOOM it hits. It sucks. And I find too that as they get older it gets harder to deal with as they themselves now understand what is going on.

I am so sorry that she has to have the VCUG. Definitely not a fun procedure.

HUGE HUGS. Elizabeth is a beautiful, amazing girl.

Jacolyn said...

It is all so hard sometimes, isn't it. I'm feeling worn down and weary also right now with all the doctors and therapies as you are. I pray that things get better with sweet Elizabeth and that you can get some peace yourself.

Laura said...

I found your blog through Olivia and Avery's website. You mentioned in your post about difficulties with eye contact and socialization. This caught my interesst because I am a 23-year-old psychology student with Asperger syndrome. I did not make correct eye contact until adolescence (it had to be taught to me along with other social and non-verbal communication skills). Like your daughter, I was very verbal and imaginative as a child but lagged behind my peers socially. Other things to watch for (besides eye contact) are sensation-seeking behaviors, tantrums, getting easily overstimulated, and fixations with particular topics. If she does have issues with social skills and non-verbal communication, early intervention will ensure a more successful outcome. If you have any questions, feel free to email me at touchedbyanalien@hotmail.com

The Hull Munchkins said...

As a micro preemie parent I wish I could say that I can't relate... but oh, how I can. For me the NICU was a continual night mare that has prepared me for what we experience today.

Abby is 5 years old and things with her in many ways are what the doctor's told us they would be... blind, deaf, can't walk, can't eat. The list goes on.

But in spite of all the sadness, she is here with us and she is living HER life! It might not look like what we had hoped, but some how, by the grace of God, her life will be complete and full of quality.

I know as a mother it's difficult to dig out of the discouragement to find the strength to move forward, but I also know you adore Elizabeth!

Hang in there. She was placed in your family for a reason. And she is making progress!

Plus, she's such a cutie!

(sorry so wordy)
-Patty

abby said...

I hear you on the 'never out of the woods' front. I keep hoping that some day we can put the past and what our kids have been through behind us, but as each day passes and the issues remain (and you guys have been at this a heck of a lot longer than we have) it's clearer and clearer to me that this is a pipe dream. Our kids are happy, and they are making progress, but what I would give to be able to make the past, well, a thing of the past.