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Thursday, December 22, 2011

22 months - Tayden's MRI and ECI Update

Christmas vacation is in full swing!!!!  I am enjoying my time off and getting to spend extra time with the twins!  On Sunday we went out to dinner with the family to celebrate Tim and my brother-in-law Craig's birthday.  After dinner we took SueSue and went to the Gaylord Hotel to see all of the great Christmas decorations.  They had beautiful trees, hundreds of lights, some trains, and many other things to see.  We had thought about going to the ICE exhibit, but decided to wait one more year so that the twins can truly enjoy it.  They loved all of the sights and it was nice !!

ECI came for their monthly visit yesterday and it was the best visit so far!!  They were so impressed with how much the twins are saying and doing.  I kept trying to get Tayden to say his ABCs or count, but he was being super shy.  As they were packing up to leave he went up to one of the therapist's laptop and identified all of the letters in TOSHIBA.  She was blown away!!!  Brooklyn was her usual self and was getting into all of the toys that they brought to play with.  The occupational therapist told us that they work with numerous children and they rarely see children who can count to 10 and know their ABCs before they are 2.  She told us that in their eyes, we are ahead of the game!!!  We aren't scheduled to have their annual review until the summer, but they feel we should assess in February and are almost certain that they will no longer need services!!!!  What a blessing!!!!!!!!!!  They usually conclude our meetings with goals for us to work on such as using a fork (last month's goal which we have mastered), but they couldn't think of a goal for us this month because the twins are doing so well.  After they left I got a little emotional.  We have been facing a gap for so very long and to think that the gap is almost closed is a huge accomplishment.  I think of Tayden at birth and how he scored so low on his first two Apgar tests in the first 10 minutes of life.  He couldn't breathe on his own and was so very weak, and now he can count to 12, say his ABCs and recognize most of the letters in isolation!  Brooklyn can count to 10 and can say most of her ABCs.  She is too busy to sit down and bother with letters.  God definitely performed a miracle on February 18, 2010, and has continued to perform miracles since that day.

Today was Tayden's follow-up MRI on his brain.  He has had a cough so we made sure that the procedure would still be safe and the doctors assured us it would be.  SueSue came to stay with Brooklyn and Tim and I took Tayden to Cook Childrens near downtown Fort Worth.  I was able to go back with him and stay until they had knocked him out.  I thought he would put up a fight, but once they put the laughing gas mask on him, it was a very quick process.  Tim and I grabbed lunch in the cafeteria and then waited about 30 minutes until they called us back.  He was crying and had been asking for mommy (broke my heart).  He wanted no part of being in the bed so I held him and tried to comfort him.  He had the same issues he had last year - very rapid breathing, raspy breath sounds, and was still coughing.  The nurse said that she felt it was croup.  They did not feel comfortable sending us home at that point, so they sent in a respiratory specialist.  The doctor listened to him and decided to give him a round of steroids in his IV.  His airways had already been irritated with the orignial cough, and the breathing tube down his throat just irriated them further.  He started drinking apple juice and even had his first popsicle.  Within an hour or so his breathing was under control and they felt okay discharging him.  We should have the results in 2-3 days.  As we waited for the car we hung out in the lobby with the beautiful Christmas tree.  They had a dog dressed in holiday attire performing tricks for several of the patients.  There were numerous children with bald heads pushing their IV poles, some in little wagons, and one was even in his hospital bed that had been pushed down to the lobby.  This sight completely put things in perspective for me.  We had been in such a hurry to get home to resume our "normal" lives, and here was a room full of children whose "normal" is a hospital room, constant poking and proding, and a continuous battle to get healthy.  They and their families will most likely spend Christmas in a hospital eating cafeteria food, rather than at home playing with their new toys that Santa has brought.  The only thing I could think was how fortunate we are to have two healthy children.  It is hard for parents to understand just how blessed they are until they are faced with a sick child.  Our two month NICU stay was minor compared to what so many parents and children face.  The further we get from those days, the easier it becomes for me to take their health for granted, but today definitely took me back.  I have been guilty of getting caught up in the commercial side of Christmas, making sure the babies have enough toys to keep them busy for awhile and today God used a brief encounter to make me rethink my focus.  It isn't what is under the tree, or on the table that matters.  The best gift we have been given cannot fit in a box or be wrapped in pretty paper.  We are all healthy and have a wonderful family that loves and supports us.  I pray for those precious children and their parents, who fight a new battle each and every day.     

May each of you be blessed with a wonderful, healthy holiday season!  I will post MRI results as soon as we get them!

Our ABC activity - Brooklyn hurridly ripped all of her side down

Tayden was entertained for quite a while

Climbing on the table as usual

Reading with SueSue - check out Brooklyn's socks (my socks).  She is obsessed.

eating a lemon

cousin Payton

Craig reluctantly standing up for the birthday song

Malley and Lolly

Tayden and Dada

At the Gaylord

The wine bottle tree

Brooklyn was hiding from the fountain

Before the procedure

After the procedure - eating his first popsicle