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Monday, January 30, 2012

Through My Eyes...

Through My Eyes...

If only you could see my little girl through my eyes,
 the way I see her...
She is so beautiful!
She is so happy!
She is so full of unconditional love!
She often looks at the ceiling and her eyes follow things I cannot see.
Then she giggles and darts her eyes in another direction,
as if to see the angels that are hidden from my view.
Her heart is so pure, she knows only love.

Oh, how it breaks my heart to hear the bold, ugly comments about 'her'
and her trisomy brothers and sisters.
"She would be better off dead."
"She doesn't know the difference between her father and the door."
"Kill them all!"
"How can you bring a child into the world knowing they will live a life of pain?"
"She 'suffers' from trisomy 18."
"You must've done something bad to have a child like that."
Oh, the terrible things said about these children from uneducated and heartless minds.

My daughter does not 'suffer' from trisomy 18.
Our world suffers from inhumanity and self-centeredness.
To love my daughter and those like her is to truly know and understand agape love.


"If only you could see the world through my eyes," whispers a voice to me.
"A world were love knows no bounds,
a world where everyone is beautiful,
a world where everyone has a purpose."

Was that her voice speaking to me?
Or that of Jesus, gently nudging me to love and forgive as he has.

I have been given a most precious gift...
the gift of life, the gift of love.
I wish you, too, could experience this.
I wish you could see things through my eyes.


Rebekah has scoliosis, and it seems to be getting progressively worse.  We go to a Shriners Hospital to follow its progression and they have been reluctant to do many interventions. But each x-ray has been getting steadily worse, so they agreed it was time to do something to try to slow down the progression. The danger of scoliosis, especially an 'S' curve scoliosis, is that it will eventually crowd the heart and one lung restricting growth and obviously causing problems. We are a long way from that point, but it seems evident that we will eventually get there. The doctor would like to slow down the growth as much as possible so that we can hold off on any kind of surgery until she is a teenager. Once you fuse the spine, put rods in place, or any of the other surgical methods for correcting bad scoliosis, you stunt growth so that the patient can really no longer grow. While there are some nonsurgical casting procedures, they are not considered as effective for 'S' curve scoliosis as for 'C' curve scoliosis, especially in patients with a chromosome disorder.

There are many types of scoliosis braces. The original plan was to get a hard shell TLSO (Thoraco-Lumbo-Sacral-Orthosis brace, or also known as a Boston brace). But because the corrective pressure put on her during the casting did not result in a >50% improvement, we went with a TLSO that has more padding and less hard plastic and will be a little more breathable. The doctor is hoping it will encourage us to use it more often and therefore be more effective in the long term. But we have to try to balance maintaining her spinal curve with improving her development. In any case, the braces hinder her development by limiting her movement and adding a lot of weight to her already weak muscles.

Here is a picture story of the process of getting fitted for a TLSO, which includes being plastered in a cast.

9/21/11 S Curve Measurements: Top - 27 degrees, Bottom - 29 degrees
12/14/11 S Curve Measurements: Top - 33 degrees, Bottom - 30 degrees

Getting ready for the casting. First a tight body shirt is placed on the patient. The shirt has no obvious seams to cause irritation and the same kind of shirt is worn under the TLSO to help prevent breakdown of the skin.

Rebekah was placed on a crazy contraption and balanced on about a 2 inch wide 'sling'. Then warm, wet pieces of plaster were wrapped around her body from below the arm pits to right below the hip bones. Then they were smoothed down. Rebekah seemed in a trance and loved the attention, proprioceptive input, and the warmth. They stated she was, by far, the easiest 2 year old they had done!

Then her feet are put in straps at one end and her head put into a sling of sorts. They applied pressure to 3 different points in order to compensate for and correct the scoliosis. Then they 'crank' the contraption and stretch her out like the medieval 'rack' used in torture chambers. (It didn't really hurt her, just gave her a nice stretch. She actually didn't complain during the whole process; it probably felt really good on her back.) She was kept in this position for about 10 minutes until the plaster was hardened.

Once hardened, she was taken out and carried to x-ray to see how well the correction worked.

Here she is getting the x-ray done. The pins show the sections where the correction pressure points were placed.

Here is the x-ray with the cast. From my untrained eye, it seemed tons better than the previous x-rays. But it didn't improve her scoliosis the desired 50% or better goal. The S curve was now about 117 degrees on the top and 21 degrees on the bottom. The bottom curve was much harder to correct and clearly is bone growth, not weak muscle as previously thought by the doctors during earlier x-rays. This means we will not be able to correct the curve, but we will try to slow down the progression so that it does not get real bad before puberty, the preferred time for any surgical interventions since growth of the spine can be stunted once surgery is performed. Even the growing rods only have a certain amount of growth capability built into them. All of this was disappointing to hear. But we are committed to doing what we can to improve Rebekah's condition without greatly hindering her developmental growth opportunities. The trick is to figure out how much use of the brace is necessary to slow the growth down while we continue to see developmental gains and encourage Rebekah to sit on her own and move and roll around. A brace would certainly limit her movement and exploration at this critical stage of her development.

With the x-rays over, the plaster cast can now be removed. A little hand saw is used and it is cut in a straight line that was drawn on her during the casting process. Right under the line is a heavy weight strip of material that prevents the saw from going into her skin.

Then a tool is used to separate the cast so we can pull her out. The cast needs to remain intact so it can be used to mold the new TLSO.

A few weeks later the base TLSO was completed. I forgot my camera the day of the fitting, but basically they put the tight white undershirt on like in the picture. The shell was placed on Rebekah and cut to fit her under the arms, far enough below the trach not to obstruct it, and high enough at the hips to allow her to sit in the TLSO. Then it was drilled to add airholes and the straps were added to it.

Here is the front of the completed TLSO. The round hole is cut for her g-tube so that the shell doesn't need to be removed for each feeding. The 3 straps are pulled so that the TLSO is tight enough to 'not move', but not so tight that it hinders breathing. We undo the lower straps during feeding just so we don't have so much pressure on her little tummy that it causes her to vomit.

The back goes all the way down past the sacram, but does not go too far to hinder sitting. The white sections with the holes are in areas where there are no pressure points. This adds a little more air circulation and comfort to the TLSO. However, if the casting had improved her scoliosis more, they would have stayed with a hard shell brace that would ultimately be more effective (but less comfortable). The lack of improvement is because the scoliosis is based more on hard bone curvature versus a muscular cause to the curve which is more 'correctable' over time.
So for anyone facing a casting scenario for your child's scoliosis, this should give you an idea of what you might expect. Although the process was time-consuming, it wasn't difficult on Rebekah. She rather enjoyed the warmth and confinement of the plaster session. She didn't care for the brace the first week or two and seemed to hold her breath. But we never really got much out of her than a little whining. She is now doing well in it, and can wear it pretty much all the time with no issues with her skin. We take it off for a few hours here and there for therapy and play time. It is supposed to be worn like 23 hours per day, but we have to balance physical development with reducing the curve progression. We will have to go through the process probably about once every 4 months or so, depending on her rate of growth. If her curve remains stable from the last uncasted x-ray statistics, then we will know we have a good plan in place.

Sunday, January 8, 2012

Karen for First Lady!

Michael and I made plans to attend our first ever Republican Party even - a meet and greet dinner with Senator Santorum at a local restaurant. The thought came to me about an hour before we had to leave that I should give him a note with a picture of us with him from last year and an invitation to his wife to join our online community. Here's my short note. I included several of Rebekah's info cards and a picture of our family.

Dear Mr. Santorum,

We had the pleasure of meeting you at the SOFT Conference last summer in Chicago!

A group of us have started a nonprofit called Trisomy Advocacy Group – a group meant to educate and help parents advocate for their trisomy 18, 13, and any other trisomies not currently represented by a national organization. Like you, we have had our share of disappointing encounters with the medical community, despite our full trisomy 18 daughter being 32 months old. We would love to talk to Karen or you about it! We would also love to give Karen some trisomy support. We have a great moms group on facebook, and she could even join under a different name if she didn’t want the attention. I cannot tell you how much we have learned from our moms group and how it has helped us to be better advocates. God bless! We will be voting for you!

Michael and Susan Budd

I held a folded paper in my hand waiting for the opportunity to slip it into his hand when I had my chance to meet him as he made his way through the room greeting everyone there. We arrived 40 minutes before it was scheduled to start - good thing as he started speaking only a few minutes later. I would have to wait until after his speech to get my moment.

As I struggled admist the crowd to see Santorum as he spoke, I can honestly say I felt an amazing presence in the room. I believe this man to be a man of character, speaking words of truth - someone who can bring integrity back to the White House. There is no candidate that I agree with 100% on every issue, but I would take someone who I agree with on 90% of the topics and who I know would be true to their word. 

My excitement suddenly grew though!  I didn't expect to see his wife, Karen, standing next to him. For some unexplained reason, my eyes suddenly welled up with tears as I felt an inexplicable bond with this woman. The letter I wrote was really intended for Karen, but I didn't dream I would see her at this event since Rick was making his grassroots tour across the Upstate area of SC and visiting location after location every few hours. I was so excited! I could now give the letter to Karen directly!

The speech finished and I continued to push my way through the crowd waiting for my opportunity to get to the Senator. But as I got closer, I saw Karen was no longer by his side! My heart dropped. I asked a ady who had been standing there if she knew where Karen went. She said she heard her saying something about the bathroom.

So I snuck off to the bathroom to 'corner' her despite Michael's urgings to give her some privacy. Besides her, that bathroom was empty! I patiently waited until she came out of the bathroom stall and washed her hands, then I made my move! I quickly introduced myself as a fellow trisomy 18 mom, my heart welling with a pride that only another trisomy mom would understand. I gave her the letter and quickly said a few words about our Trisomy Advocacy Group, Trisomy 18 Mommies group, and my family.

Karen started asking me questions and took a glance at the letter and my info card with Rebekah's picture. She recognized Rebekah! She said, "You have a blog, don't you? It's beautiful, I loved it!" My heart burst with pride and I suddenly had the urge to run home and add to my long-neglected blog! My writer's block had been broken!  We chatted some more about advocacy and these words flowed from her mouth, "I have such a passion for this! [referring to trisomy 18 advocacy] I am so tired of doctors telling us our children are 'incompatible with life'."

She asked me about Rebekah's story. How did it start? What did the doctors do/say? What did we do with Rebekah? We chatted for long enough in the bathroom that someone from their security group finally knocked on the door, gave me an evil eye, and asked if she was okay. Before I could say a word, she said everything was fine. She gave me a hug and we left the bathroom. I paused her so Michael could snap a picture of us together. Then her son, Dan, gently told his mother they had to move on to the next location and were getting ready to leave. Michael just looked at me disbelieving I actually DID have the guts to stop her in the bathroom after all!

Let me tell you, I love this woman! She would be such a great First Lady for our country. She is as down-to-earth as Rick, not afraid to shake hands with those around her, and has such a kind heart. I am most honored to meet her, even though I thought it meant I missed my opportunity to speak with her husband. But she had my letter! So I knew he would at least get to see the picture from last summer of him with Rebekah, Michael, and I.

But my evening wasn't finished! I made my way across the room to our table, and I squeezed next to Senator Santorum as he was heading out a side exit door. I quickly stuck out my hand, and reminded him that we had met at the SOFT conference in Chicago last July. He gave me a hug, and asked about our daughter. He, too, gets my vote for the White House!