Wednesday, December 10, 2008

MRI Results

Yesterday Trinity had her MRI done and today we seen Dr. Haines, the Neurosurgeon, to get the results. Unfortunately it was not the news we were looking for. The piece of skull that they removed the last decompression has grown back and is blocking the spinal fluid from getting to a portion of her brain. This can cause problems with choking, breathing, speech, facial expressions, and eating. There was a chance this could have happened, but we were hoping it didn't. He would like to get this done sooner then later, but is willing to wait until after the first of the year. Shannon and I are going to talk this over and pray about what we should do. It is very difficult with the holidays only 2 weeks away. We are thinking that we will probably wait until after the first of the year so we can enjoy our holidays with family and friends, but we also have to consider our insurance (don't you love insurance!!). Please pray that we make the right decision, not for our sake, but for Trinity's. He just don't want any of her current symptoms to get any worse.

Yesterday we also seen the Urologist for the first time. They are going to do some testing on Trinity after the first of the year (dates still to be determined). This will involve some ultrasounds of the bladder and kidneys and some other testing that will determine if Trinity is voiding completely and not causing any damage to her bladder and kidneys. They will also be checking her bowels to see how that looks. She deals with constipation and we have to help her with suppositories of which they informed us that will never change and she will deal with this for the rest of her life. He wanted to make sure I understood that doing a catheter is never out of the question and that it will probably be likely in Trinity's future. He did a good job of informing me of the things that Trinity will deal with as she gets older and I appreciate his honesty.

The past two days have been emotionally draining. Just when things start looking good for Trinity we get the news of yet another surgery. Discouraged is my word for the day. I am using this blog to be honest with everyone so I hope you don't mind. Do you ever wonder how much a little body like Trinity's can go through? It don't seem fair that someone as small as her should have to go through yet another surgery.

On a lighter note, we took Aubree and Trinity to the Mall of America this past weekend. We found it odd that everytime we would walk into a store and out of the store the alarm would go off. After awhile we figured out that Trinity's shunt is magnetic and the alarms pick up on magnets. So Trinity will never be able to be a very good thief because she will always get caught!!

8 comments:

Anonymous said...

Sorry to hear that you guys are having to face more tough decisions right now. Glad you have a forum to share your feelings, though. We'll be lifting you all up in prayer and am sure that God will lead you to the right decisions. He seems to know what's best :)

Praying that you'll feel God's leading and peace,

Love,
Stefanie and family

Anonymous said...

Oh Miranda I love you!

I'm sad to hear that Trinity has to go through another surgery...I cannot imagine how hard that news was. We'll pray that God will give both of you clarity so you can make the best decision for your baby!

But that last paragraph about Trinity not being able to be a thief when she grows up!?! That made me grin... :)

Praying that you will continue to find JOY amidst the TRIALS.

Elsa & Pablo (+ mama) said...

I have been following your story for a long time, and going through very similar emotions. As a mother of a 5 month old girl with spina bifida, mmc on sacral level, I KNOW.

I'm sorry to hear you've got this kind of news, but remember, there's always hope. Love, support, medical interventions, routines and daily life will carry us through the difficulties. I'll keep on praying for our darlings.

I have to catheterize E. 4 times/day, but its already something so "normal". With catheters you can live very normally; we travel (even abroad), shop, move around just like anybody. I catheterize E. when I change her diapers. Takes me a. 5 mins from taking her clothes off to getting her clothes back on. Like our urinal therapist tells us "Remember guys, this is just one way to do it! Nothing special!"

In all these difficulties that life has brought on the paths of our dear children, aren't these girls just most amazing, adorable, strong and wonderful?

Merry Christmas and All the best for the New Year 2009.

With love,

Anna, Elsa and Ignacio
Helsinki, Finland

Susan M. Nelson said...

Thank you for the update. I check up on Trinity here and there. We will be praying for peace during this holiday season. Trinity's & Whitney's first Christmas celebration!

Unknown said...

Miranda - You are always in our thoughts and prayers. We will be aking for extra support and comfort for you this week. I know that things aren't going as well as you had hoped, but I always remember that Trinity always ends up showing us how strong she really is! Her strength is amazing and everything will be back to good soon!!! Love you tons and tons and tons!
-Danni

The Gray Family said...

So sorry to hear this news. I miss you so much and wish I could hug you right now. We will pray for you. Love you so much! - Andi

roduns said...

Oh Dear Miranda!

We are so sorry to hear this news! I totally understand why you would feel drained and discouraged. We will be praying that you will feel God holding you and carrying you through this next decision and surgery. Praying for peace, wisdom, and an overwhelming sense of His love and presence.

Much love,
R & M & E

Anonymous said...

SHANNON, MIRANDA, AUBREE AND TRINITY
CONSIDER YOURSELVES THOROUGHLY HUGGED! WE LOVE YOU AND WE CONTINUE TO PRAY FOR TRINITY AND ALL OF YOU. GOD WILL TAKE CARE OF YOU. PLEASE KEEP TRUSTING HIM AND LOVING HIM. THERE IS NO OTHER WAY TO LIVE! LOVE, LOVES AND PASTOR