Thursday, December 29, 2011

My son can see!

Tuesday, December 27th, finally came. It was a day that I had dreaded for over a month ever since our optometrist had made the appointment for Yuli with the Vanderbilt Eye Institute back in November.  I knew this day could hold news that I was not ready to hear in regard to Yuli’s vision.  When we began the adoption process, our paperwork from Bulgaria stated that Yuli had slight strabismus, which is a disorder in which the two eyes do not line up in the same direction, and therefore do not look at the same object at the same time.

When we received more extensive medical information on Yuli prior to our first trip to Bulgaria in December of 2010, the paperwork stated that he had “dim vision,” which naturally concerned us. I consulted with a specialist at that time who looked over the information on Yuli’s eyes and informed us that he could have damage to his optic nerve, which could not be repaired, however, the specialist could not be sure until Yuli was examined by him in the states. The paperwork also stated that Yuli needed surgery to repair his eyes and would require glasses post surgery.

Friends kept assuring us that many children born in the United States and elsewhere had strabismus, which could easily be repaired in many instances by surgery, so there was hope for our son. We were also reminded by our agency and other adoptive parents that the medical information sent from Bulgaria was not always reliable. Rob and I decided long ago that none of this mattered as we had already committed to being Yuli’s parents and would do whatever it took to help our son.

When Rob and I met Yuli on December 6, 2010, during our first trip to Bulgaria Yuli had a patch over one of his eyes as the orphanage doctor had decided to use patching to strengthen his eyes in preparation for surgery.  Rob and I also noticed during that visit that Yuli sometimes held his head in an awkward head position when trying to look in the direction of someone’s voice or other noise. We were not sure if the awkward movements of his head had to do with the patching or something else.

When we returned to Bulgaria in June of this year to bring Yuli home, his eyes looked much better and the orphanage had ceased patching.  The medical paperwork that was sent home with Yuli stated again that we would need to have surgery on his eyes and that Yuli would need glasses.

Once we got home with Yuli and began to become more comfortable as a family, Rob and I had to prioritize Yuli’s healthcare needs. Thankfully, our pediatrician was a great help in that area, and he emphasized to us that repairing Yuli’s palate was our first priority. As you know from my previous post, Yuli had that surgery in September and has now begun speech and feeding therapy after getting the green light from the surgeon.

Next on the priority list was Yuli’s eyesight. Rob and I made an appointment with our family eye doctor who, after examining Yuli (or trying to ----Yuli was not very cooperative) , determined that Yuli had no lateral vision in his right eye. Our doctor then called the Vanderbilt Eye Institute and set up an appointment for Yuli with one of their pediatric eye specialists.

Over the last six months since Yuli came home, Rob and I noticed that his right eye would wander, especially if he was tired. I also noticed that he seemed to bump into things more often than normal so I wondered if he simply could not see items that were in his peripheral. However, I also noticed that he would pick up the tiniest speck of something off the floor to show me. Sometimes these things were no bigger than the top of a push pin. Needless to say, we were getting mixed messages on the quality of Yuli’s vision.

During Yuli’s appointment at Vanderbilt, Dr. Donahue ran a large battery of tests on Yuli’s eyes, and within minutes, he had answers for me and Rob. Our son has a congenital disorder that is called Duane Syndrome in which the sixth cranial nerve that controls the lateral muscle does not develop properly.  Yuli displayed all the classic signs from the strabismus, to the awkward head position and the narrowing of one of his eyes. People with Duane Syndrome often maintain a head posture or head turn to keep the eyes straight. The affected eye, as in Yuli’s case, may appear smaller than the other eye. The affected eye is also unable to turn outward to see items in the peripheral because the nerve which would tell the eye to turn outward is missing. It all fit. But, what about Yuli’s vision? Well, according to Dr. Donahue, my son can see very well out of both eyes. He has a little far-sightedness, which is common with Duane’s Syndrome, but he can see! Rob and I were elated!

Dr. Donahue also informed Rob and I that the surgery, had it been performed in Bulgaria, would likely have made Yuli’s disorder worse. To say that I am glad the surgery was not performed in country would be an understatement. Dr. Donahue wants to monitor Yuli over the next few months mainly to keep a check on Yuli’s head position and his ability to keep his eyes straight. The doctor stated that Yuli

Words cannot express how happy I am to know that my son can see his mommy and daddy’s face with clarity and see all of his surroundings in his new home. I have said it before, but it bears repeating…God is good!

Thursday, December 22, 2011

If You Give a Pig a Pancake and other bedtime stories

Julia, Rob, Yuli and our puppy Ghost

My eight year old daughter Julia has always loved books and being read to by her Mom and Dad. I have a very vivid memory of laying on the bed with her when she was around the age of six months and reading Dr. Suess' "Hop on Pop" to her. She would giggle and coo at the sing song sounding words that would emanate from my mouth as I read each rhyming line of verse on the page. When she became three or four, I would read at least two or three books to her at bedtime. She could never get enough. One of her absolute favorites was a book called "Good Night Moon." I must have read that book over a thousand times, but she would never tire of that sweet story. Now her brother, Yuli, is beginning to see all the wonders of the world through books, and "Good Night Moon" is also one of his favorites.

For months, I wondered if Yuli would ever take an interest in books. When we met Yuli on our first trip to Bulgaria last December, no one had ever read to him, and because of this, he had no interest in the books that I brought for him. He would not even look at the pictures on each page. Instead, he would take the book, quickly flip through the pages without looking at anything, close the book, and repeat. It was very ritualistic and methodical in the same way that he would open and close the door of the social worker's office at the orphanage over and over again during our visit.

We have come a long way since that first visit over a year ago. Yuli now enjoys me reading a book to him each night before bedtime such as "If You Give a Pig a Pancake."  He listens intently as I point out things in each picture such as an animal or flower, and when I am finished, he takes the book and tries to read the book to me as he points to the same items that I showed him on our first run through. He will also look at books now when we are riding in the car, in addition to playing with his toys.

What else has changed since our first meeting or since we brought Yuli home almost six months ago? Well, quite a lot! In the middle of September, we went to Vanderbilt Children's Hospital in Nashville, TN, where Yuli underwent surgery to repair his soft and hard palate. The surgery was a success, however, we did end up in PICU for two days because of bleeding caused from scar tissue surrounding the muscle in his palate. Apparently, some doctors in Bulgaria had attempted to repair the muscle some time ago without success. At any rate, Yuli did really well in the hospital and had all the nurses falling for him. The surgery and healing process that came after was a positive bonding experience for our family, especially for Yuli and me. When he awoke from surgery, Rob and I were the first two people he saw, and we never left his bedside.  Every time that he opened his eyes, Mommy or Daddy was there. Every time the nurses would come to give him medicine through his IV (which upset him), Mommy or Daddy was there.

Yuli leaving the PICU for a normal hospital room

When we arrived home from the surgery, we did have a short period of adjustment. Our little boy could no longer feed himself because he was wearing arm boards to keep him from putting anything sharp in his mouth that might tear his stitches or open up his newly repaired palate. Rob and I had to feed him at every meal. His diet also changed drastically for about three to four weeks, which he was not very happy about. Prior to surgery, Yuli had fallen in love with tortilla chips with salsa and queso. After the surgery, these items were forbidden because the sharp points on the chips could injure his newly repaired palate. Yuli also likes crackers and other crunchy foods. These were out as well. It was a soft food diet for our little guy for the next month. He ate mostly oatmeal, applesauce, pudding, mashed veggies or fruit, and soup. Our family gave up Mexican food for a month because it just seemed cruel to go to one of his favorite places, like Blue Coast Burrito, and not let him eat anything on the menu.... just the soft foods that we had brought for him.

During his recovery period, Yuli also had to sleep with the arm boards on each night so that he would not put his fingers in his mouth to feel his new palate and possibly pull out his stitches. He was not very happy about this either, but I cannot say that I blame him. I am sure this was not the most comfortable way in the world to sleep. But, again we got through it.

After a month, the pediatric plastic surgeon gave us the green light to gradually re-introduce hard foods back into Yuli's diet. I think our little boy put on five pounds that first week. He seemed to want to eat everything in sight!  Drinking from a cup became a much easier task for him as well with his new palate. He quickly realized that he no longer had to take tiny sips and keep them on the side of his mouth until he swallowed. He could tilt his head back and take a big gulp of milk or water if he so desired. Yuli also learned to finally drink from a straw after the surgery. When we would go out to eat before the surgery, he always wanted to have a straw in his drink to be like everyone else at the table. He would try so hard and come so close to actually succeeding with the straw on so many occasions, but he just never quite made it. I think that he never really had a strong sucking reflex because he never had to use it, even as a baby. His cleft lip was not repaired until he was a toddler so when he was fed a bottle as a baby in the orphanage, the orphanage workers used a bottle in which the tip of the nipple had been cut off so that the formula just gushed from bottle. No sucking action on Yuli's part was required.

Fast forward to about four weeks ago. Our family was having lunch at Firehouse Subs, another favorite spot of Yuli's. He was trying so hard to use his straw to drink his lemonade, and we were cheering him on as we watched the tart liquid inch up the straw and ever closer to his tiny lips. Then, he did it, and he has not looked back since! He has also learned to drink from a Nuby sippy cup, which is great for when we are at a friend's house or in the car ---- no spills! Yeah!

Yuli at Firehouse Subs wearing his favorite shirt that he picked out at Target

Yuli has also started going to the daycare/pre-school program at our church since his surgery as I have had to return to work. I am happy to report that he enjoys school, and he is learning so much each week. The school works with him on his colors, counting, and his letters and the sounds each letter makes. These are things that I have also been working with Yuli on while we are at home so it is great that we are coordinating on his education. Yuli has also made several friends at school and has continued to learn how to play, which was a skill he did not have when we came home from Bulgaria.

Those first few months were difficult when it came to Yuli playing with toys or with another child. He simply did not know what to do. The children at his school really helped where that was concerned. They modeled play for him. They showed him what to do with toys. Now, he loves toy cars and trucks, and he also loves to play with anything musical or anything that has a lot of buttons and makes noise. The firetruck that Santa is bringing Yuli that makes sounds and has working lights with lots of buttons should be a hit on Christmas day. Another change is that Yuli and Julia have learned to play together. At first, I believe that Yuli saw Julia as competition. He was very accustomed to having to fight for attention in the orphanage so he would constantly push Julia away, especially if she was hugging Rob or myself. Now, they chase each other around the house laughing all the way. If he sees Julia hugging or kissing me or Rob, he simply runs up and joins in the fun. Don't get me wrong. It is not always a bed of roses with those two, but their relationship has definitely improved by leaps and bounds.

My relationship with Yuli has also steadily improved, especially over the last few weeks. We have had several bumps in the road, but I feel that we have finally turned a corner with our bonding. In the beginning, Yuli would always want me to pick him up, but then he would immediately ask me to put him down. He wanted affection, but he always wanted it on his terms. He would kiss and hug me, but he did not always want me to hug or kiss him. If he let me hold him for more than a minute, he would never get comfortable enough to lay his head down on my shoulders. His head and body would always be stiff as he was on high alert. Over time this has changed dramatically. This last month he began laying his head down on my shoulders and almost going to sleep in my arms as I rubbed his back. He now wants me to hold him, and he fights to stay in my arms rather than let me put him down (which I need to do sometimes because my little guy is not so little anymore). One of the biggest changes in this regard, came only two nights ago. Yuli came home from school and seemed like he could be getting sick. He did not want to eat or drink. He just wanted Mommy to hold him, and I did just that. I held him for the longest time as he lay in my lap on the couch. He let me stroke his hair and comfort him. He even held my hand. I loved that time with my son, and I never wanted that moment to end.

Yuli and Mommy at a Christmas party with friends
What else do I love about being Yuli's mom? I love tucking him in every night and having him beg for more hugs and kisses, which I happily oblige. I love hearing my son's excited voice as he returns from his first Christmas party and shows me all the neat things he got or made. I love seeing his smiling face first thing in the morning as he walks down the stairs to climb in bed with me and Rob. And, I love that my little boy sings all the time. "Jingle  Bells" seems to be his current favorite!

Julia, Santa and Yuli

Daddy loves Yuli's Jingle Bell Rocker shirt!
These first six months have been a mixture of joy and sadness, but I would not change a thing. The next six months will also probably have moments of frustration and moments of immeasurable happiness. That is the nature of life, especially the life of a parent.  My job is to live in the moment and enjoy every success Yuli has and to also be there to wipe away the tears and comfort him in the moments of grief. So please stay tuned for our future adventures!