A new look on life

May 11, 2010 by nohandsbutours 2 Comments

Well, the most recent eye exam didn’t give quite the results we were hoping for.

At the last visit three weeks ago Dr. F was encouraged by the reduction in pressure in our little one’s eye and hoped that we’d be able to avoid further surgery for months, possibly even years. But the pressure has remained the same since then and so our next visit in three more weeks is a combo eye exam/pre-op. At that time Dr. F will determine if the goniotomy was successful enough to try to open the second half of the drain or if it is time to go ahead with the Baerveldt valve implant. If I’m going to be perfectly honest, that news was disappointing.

But there was a really good part to visiting Duke again. Cause these precious little Julbo frames were waiting for us when we got there.

Our little girl has a new look on life. Her strong eye went from 20/60 to 20/40 and her helper eye went from 20/400 to somewhere between 20/200 and 20/125.

And not only does Dr. F (and therefore we) know she is seeing better, more importantly, it appears she knows she’s seeing better.

Cause she grinned as soon as they were on her face. Then she spent a little extra time studying mine. She never once tried to take them off all day. And when she reappeared from her bedroom after her nap, she was sporting her little pink frames.

Something tells me that her little grin means she thinks she looks as pretty as we do.

And you know what I love about my kids? Both of her siblings were supportive of her new look. Of course I wasn’t really surprised about that. These days, about 90% of the time, that’s the way these guys are. Loving life. Laughing. Smiling. Together.

Now, there is the news that we will start patching her strong eye so that the brain is forced to accept information from the helper eye. Three hours a day. Seven days a week. For the next two years.

Can’t say that I’m looking forward to it. Course from what I know about this little girl, she’ll roll with the punches. It’s what she seems to do best. And when she gets a questioning look from someone in public about her patch, she’s got her posse by her side.

When you got love like this on your right and left, who needs to worry about what others might think…

**reworked from a post on my personal blog from last week. It’s been a little hectic around here as late.**

Reflections from my first time in "the waiting chair"

April 11, 2010 by nohandsbutours 7 Comments

Welcome to Kristi, our newest contributing blogger. Kristi has three children adopted from China and her newest daughter, Darcy, joined their family in February. Kristi blogs about their family at Fireworks and Fireflies.

Wednesday of this past week I joined a club. A club I never would have imagined myself in just a few short years ago. The waiting chair club.

I’ll have to be honest, I wasn’t looking forward to being a member. Oh sure, I was all “cool hand Luke” until Tuesday. I’d casually toss out a request for friends to pray, but I was calm and relaxed.

But then “the day before surgery” came. As my baby girl’s goniotomy (one potential pressure reliever for glaucoma) drew closer, I became less and less calm, cool and collected and more and more a bundle of raw nerves. I could hardly get my thoughts together enough to compose a post on my personal blog.

The more I thought about it, the more confused about my own emotions I became. On the one hand I knew that there were so many other mothers out there who had/were/will be facing soon much more serious and complicated surgery for their children. Open heart, spina bifida, and various transplants to name a few. So I began to feel guilty for being all nervous about the outcome of outpatient eye surgery for my Darcy.

But on the other hand I kept having flashbacks of Dr. F saying that while she promised to do her best, there are risks associated with any surgery. Risks which in this case include the possibility of permanent blindness in Darcy’s “helper eye.” Or remembering that paragraph about general anethesia that made my head spin and eyes tear up. If you’ve never seen “the paragraph” before, its the one that lists the possible negative effects of “going under.” The one you have to sign right beside so they know you understand the risks associated. The one that includes the words “and in rare cases, death.” In my mind I knew that it is very rare that there are such complications. But I also knew that out of all births, port wine stains only occur in an estimated 0.3% (according to the Vascular Birthmarks Foundation) AND (according to WebMD) only about 8% of people with facial port wine stains have Sturge Weber Syndrome. Leave it to me to let my mind wander…

So I was vacillating between guilt and fear. Honestly neither was a pretty destination for my thoughts.

The good news is that eventually I got a post up to let family and friends know that we were finally approaching a potential solution for Darcy’s eyesight. And I requested prayer. I wasn’t eloquent enough to get a list of specific things to pray about up, but I did get a general call out there. Pretty soon comments, emails, and phone calls started rolling in. About that time, peace returned to my soul.

Peace returned because I realized what the problem had been. I had wanted to take control of the situation. I wanted to be the one to make Darcy’s eyesight better. I wanted to be the one to protect her and keep her safe. I wanted the surgery to be successful. I, I, I…

While it is of course natural ~ and I guess somewhat good ~ to have all those desires, the problem was that I was trying to take it all out of God’s hands. After all, I’ve known since my first dream about a daughter named Darcy that He has been writing her story to become part of our family ever since she entered the waiting child list. I had to place my trust back in Him. Because if He brought us this far, He wasn’t going to leave us now…

And Wednesday night in my exhaustion I nearly cried when I read emails that listed all the specific things people prayed about in the hours leading up to Darcy’s surgery. Prayer requests I wanted to make on Tuesday but was unable due to my guilt and fear inner turmoil. Prayers requests that were offered ~ and this next part is HUGE here ~ by other Mamas on the other side of sitting in the waiting chair for the first time. Women in this circle who have gone before me and understand the fear. Prayers that were answered even though I was not able to communicate them.

Things like: Darcy ~ my kiddo who toddles down the hall most mornings straight from her bed saying, “Ma-ma, I eat cereal” on her way for her morning hug ~ would not be miserably hungry as she waited for surgery scheduled around 10:30. {She never even asked for as much as a drink from the time she woke up until she went back for surgery}

My peace of mind. I think that’s enough said. {I caught up on a book club reading, went downstairs to check out their pediatric eyeglass frame options, and chatted calmly with Ian while we waited. And I was not anxious, at all. Well, okay, I did get a bit uneasy,when it was about an hour after Dr. F came out to talk to us and we still hadn’t been called back to Darcy in recovery. But the recovery nurse eventually called me back to be with Darcy as she woke up because she had been in my shoes before.}

Her surgeon would be skilled. {We knew that Dr. F was a leader in pediatric glaucoma. Then Wednesday we met another family whose daughter also has Type II Sturge Weber who did extensive research on pediatric glaucoma surgeons and flew in from Chicago to have Dr. F do their daughter’s surgery. This woman shared that Dr. F is considered the top in the country.}

Darcy would wake up gently. I had been warned that many kids come up swinging or very agitated. {She rolled over, said “Mama” and reached out her arms to me. No crying, no fear.}

Darcy would not experience nausea. {She downed four packets of graham crackers and 16 ounces of apple juice in recovery and then managed to eat a banana and an entire package of Ramen upon our arrival home.}

Darcy would have a quick recovery. {It was all we could do to keep her from playing rough with her older siblings that afternoon.}

Follow up medications would not be an issue. {She gets eyedrops ten times a day (Four different types, some four times, some two times ~ it’s complicated enough that we have a daily calendar…) and calmly lays her head back each time we come at her with a bottle.}

These are just a few examples of things that people wrote in comments and emails that they prayed for. There are more.

And will be again. Next time.

Because even if this surgery was successful (we won’t know for sure for about five more weeks) there will be the other half of the goniotomy. And if it wasn’t successful there will be surgery to implant a tiny stint.

But what I must remember is that I wasn’t in that chair on Wednesday alone. There were so many who have sat there before. Knowing just what this Mother’s heart was feeling. Knowing just what my concerns were. And praying.

And most importantly, Darcy’s Heavenly Father was listening.

While I can’t say that I think I’d ever get to the point of liking the waiting chair, now that I’m on this side, I know that I can face it again.

And when you are the Mama getting ready for your first time in the waiting chair, know that you will make it too. Because when anxiety takes over and you don’t know what to pray for, I’ll be among the group of Mamas able to lift up specific prayers for you and your sweet child just like so many other mamas did for me.


March 28, 2010 by nohandsbutours 0 Comments

by Jess, mom to Gabe Xulu from China with congenital glaucoma

While Tim and I were paper-chasing we knew from the get go that we would be adopting SN, so even before we submitted our dossier we filled out our SN checklist. Our agency didn’t want us to submit it though until we submitted our dossier. We had checked all the minor needs and maybe one of the moderate needs. We put in our original home study that we would love to bring another daughter into our family, 1 – 3 yrs. And so we paper chased…

Then something happened, God laid on my heart that our son was in China. After doing some research we found that there were huge numbers of boys waiting for homes and that there were very few families who wanted to adopt boys. DH and I talked and after a few days we both agreed to tell our SW that either gender would be wonderful and raised our age to 4 yrs. Then shortly before we were due to submit our dossier our agency held an event in which they invited families that had already adopted SN children with various SN and from various countries. We went and had a wonderful time talking to families about their children. What a true picture of families with needs that we thought would be too much for us. We looked at each other and said. “wow”. So many needs that we thought we knew, but really didn’t. We could do this. That night changed our lives as we added vision impairments and hepatitis B to our list.

The day I got the call for our son, I was at school and had to wait until 3pm until my husband could get to school and we opened the email together. We took one look at his big beautiful eyes and we knew that this was our son! He was almost 3 and had congenital glaucoma of both eyes. His report was conflicting, but we knew that no matter what his vision, he was ours. With God’s help we knew we were safe in this step of faith. We gave our preliminary yes and then waited for our pediatrician and ophthalmologist to tell us what they thought of his file. They both thought he looked good, but our ophthalmologist saw the same things we did – they referred to him seeing, but also said things like, “but due to his blindness”. So, we went into this knowing that he could be blind.

At 8 months he had had a trabeculectomy to relive his glaucoma (drained the fluid in his eyes which causes the pressure), but he went 8 months with the damage being done. I began research, talked with our ISD professionals and prayed for our son while we waited to bring him home.

On September 14th, 2009 we hugged our son for the first time and watched as he played with the cars we gave him-he could see them!! He had to hold them very close, but he could see! Today our Gabe wears glasses for his near-sightedness and myopia.

We go to the pediatric ophthalmologist 2 times per year and one of those visits is a pressure check under anesthesia. Right now his pressure is normal and we pray that it stays that way for years to come. It amazes me that this need is not one that we think about daily or even weekly. Each morning we put on his glasses and that is all. Occasionally we have to get his glasses adjusted and clean them daily, but most days I think, “What special need?”

I praise God that he opened our hearts and minds to vision impairments otherwise we would not have our rough and tumble, awesome son with the biggest beautiful eyes that completely warm your heart! We have been home for a little over 6 months. Gabe knows his colors, has learned English amazingly well, loves to play in his coupe car outside and he has the best “squeezer hug”. He will wrap his arms around you and hug with all his might and tells me “I lub you sooooooo mucha!”

Feel free to visit our family blog here.