I want to apologize for the delay in writing in this blog. Things have gotten so busy these days! Hope is doing great! She is growing like a weed, her hair is starting to grow out a bit more, and she is an all around happy gal. She has a great memory too- our 5 year old daughter Hannah has been studying her phonics by watching a dvd that teaches the sounds of each letter. Tonight we were amazed when Hope told us every letter and sound! She memorized them all just from listening to the dvd. The girl is growing by leaps and bounds, and her teachers are all really proud of her. She is starting to talk alot more, although she is still in a parroting phase. Her teachers say it is typical for blind children to go through a stage of repeating everything, vs. conversing. They say she is right on the threshold for beginning to converse, and that is really exciting for us. She is talking, but getting things kind of mixed up. Like instead of asking for a drink, she will say, “Do you want a glass of water, honey?” which means that she wants a glass of water. We are trying to teach her to say, “I want a glass of water” and she is starting to get it. 🙂
I also realized that I hadn’t written a report of our last doctor visit. We had the test at the cellular level back in December. We were really excited and hopeful about it, from the doctors reports of how amazingly her right eye reattached itself. When they went in to her eyes at the cellular level, though, they found that she has no vision. It was extremely dissapointing, after being convinced that she would see normally wtih glasses, and it made us sad. Hope doesnt seem to mind, she is doing well getting around, and really uses her other senses to compensate for her lack of vision. The whole thing has been a roller coaster ride, but we are now settling into a routine, and learning the ins and outs of sight impairment.
In other news, our family bought a house in December. So we are now enjoying life in the city of Riverside. We were able to get much more for the money out here, and for the same price of renting a 1600 square foot house with a patio, we now have a 3300 square foot house on an acre! Woo hoo! We love the beauty of the nature out here, and have been settling in nicely.
I will try to update more often, and post some pictures too…..
Just wanted to write a quick update since it has been so long since I posted last. Things in the Phillips house have been good. We had a great summer going to Arizona and Palm Springs with Grandma and Grandpa. Now that school has started, we are getting back into the swing of things. Hope has a new teacher this year, Ms. Elizabeth. She is quite the hit around our house, and Hope talks about her often. She also has missed OT, and has been asking about it a lot. She is glad to be back in school, and seems to thrive with the structure and fun activities. We went back to her original surgeon a few weeks ago, who was amazed at the way her eye has completely re-attached itself. He exact quote: “Im normally a cautious and conservative man, and I have to say that what I see here is astounding.” He is going to have us come back in a few weeks to put Hope under anesthesia and do an eye exam that goes deep into the cellular level. He said that he will be able to tell me exactly what she can see after doing the test, so its quite exciting! He thinks her vision looks promising, and said that we need to fight for her vision, and wear her glasses every day. He said that her brain will train her eye, and that wearing the glasses will play a huge role in that. I will write another update as soon as we have the test. More to come later….
Can you believe it was actually one year ago today that we saw Hope for the very first time? So much has happened since then, and the year has flown by! We are so blessed to have her in our lives. We had a big party at the park planned for today, but we canceled it due to the rain forecast. The rain ended up not even coming, so that was a bummer! Grandma brought over a cupcake for Hope, and we sang Happy Birthday to her. She seemed to enjoy it.
Last night, I got to share Hope’s story at a church called Blessed International. It’s an amazing group of people, and it was so encouraging to tell her story again. I always get fired up when I remember all that God did to bring her here. God is so good!
Last night, we had the tv on a show called Yo Gabba Gabba. If you haven’t seen it, it’s a kids show that is very very random and colorful. Usually when our other kids watch tv, Hope roams around the roam playing with stuff. Well, last night, I looked over at her, and she was watching tv. Then, the character said, “Come on Kids! Let’s do a dance…follow me!” and he started doing arm motions. Hope began following him, and doing the motions! I was flabbergasted! I have never seen her watch tv or do any kind of hand motions following anyone before. We all started clapping for her, and kept rewinding the show, so she could do that part again and again. It was very very fun!!
Then, this morning, Hope had her ophthalmologist appointment with the new doctor we went to a few weeks ago. After a detailed exam, he said that she most definitely has Retinopathy of Prematurity. He looked at her eyes, and said that her optic nerves in her right eye were tracking, and that it looks very promising. Her retina is still reattached, and everything looks great. He said that we need to keep her glasses on because she probably sees really blurry without them, and her eyes need to be trained to be able to focus. So he did the exam that she got back in December that tells the dr what strength of prescription she needs. It turns out that her sight has improved, and she gets less of a prescription than she had before! When I took the prescription into the optometrist to fill it, she said that it was quite a significant improvement, going from a 22.0 to a 19.0. She said that for every point, there are 4 points in optometry, so she said it was like being reduced 12 points….she said that it was a really good sign. So we are very excited about her progress!!!
Another thing we have noticed is drastic improvement just this week in her verbal skills. She has been speaking in sentences suddenly, and often talks about jackets, the park, vitamins, and choo choo trains. Its so so cute, and her voice is so sweet and breathy! We have really enjoyed eachother this week, as she has been home on Easter Break, and have had some great bonding time together.
We want to invite all of you to her Gotcha Day/Birthday Party on May 2nd. It will be held in Aliso Viejo from 11am-2pm. We want anyone who has been following her blog to know that you are totally invited, and we would love to have you. If you can come, please rsvp in the comment section, and I will email you directions.
Yesterday, the girls and I went to a Christian conference in Anaheim. During worship I was introduced to a woman who was recently healed of blindness! She went blind when she was in 2nd grade, and the Lord opened her eyes a few years ago partially, and then on Friday night of the conference, she got the rest of her vision back! So when she heard about Hope, she wanted to pray for her. She held little sleeping Hope in her arms, and prayed and sang over her. It was so beautiful.
Lots of people these days have been asking how Hope’s vision is coming along. Well, the news isn’t as good as we were hoping for. It seems the glasses have only helped ever so slightly, and haven’t done much at all to restore her eyesight as we were originally thinking. I found another opthamologist, and went in for a second opinion yesterday. He strongly feels that Hope is not a victim of shaken baby syndrome at all. He said that because all of her other tests came out negative, like the brain scan, and all that, that she definately is not a victim of abuse. It is really relieving to hear that, as the thought of her going through some sort of abuse makes us absolutely sick. He said that by looking at her, he thinks that she has Retinopathy of Prematurity, which is a condition that some premature babies get if they are born before 31 weeks. He said that her physical features look like she is a preemie, especially her face shape and her long fingers. Her occupational therapist said the same thing last week, and it seems right. We are going in next Friday for a detailed exam, and he will be able to tell us with more certainty if she has it or not. I think I am also going to ask for genetic testing to see if she has something called FEVR, which is a genetic eye disease that exhibits the same symptoms as Retinopathy of Prematurity. I will post what we find next week! It was so nice to find this new doctor. He took alot of time with us, and didnt make me feel intimidated or rushed at all. He was very compassionate, and had a gentle way with Hope, and we were able to get an ultrasound of her eye, which we couldnt do at our last doctor because Hope was screaming and thrashing out of control. So Im feeling pretty good about this dr, and am interested in his findings next week. He also said that there isnt much that can be done for her sight, and that we need to just try and preserve what she does see, which at this point, we feel are just shapes and light. She does see about a foot in front of her face, if you put your hand there, or hold something up from that angle, she will see it and grab it. Its kind of hard to go from thinking she will have normal vision in her right eye with glasses, to the reality that she is pretty much not going to have much sight, but at the same time, Im ready to get on with things, and help her with where she is currently at, and make the most of what we have. She is making HUGE strides at the Blind Children’s Learning Center, and absolutely loves it. She giggles with glee every morning when we arrive, and she is getting a lot out of all the therapies that she is getting, like orientation and mobility, occupational therapy, speech, play therapy, and more. Its just amazing. Her teachers absolutely love her, and I know she is in great hands every day when I drop her off. At first, I struggled with feeling guilty that she was going 5 days a week. I kind of felt like I should be able to do whatever she was getting at school. But once I released that expectation from myself, and realized that she loves school and is thriving, it has been awesome. I dont have all the training and expertise, and I dont need to put it on myself to do everything! Im glad that I have been able to allow others to come in alongside me to help her. She has been improving so much, and is singing all the time now. She is starting to talk, although its not too clear speech, but at least she is trying, and I know its just a matter of time until we are having conversations with her!
In the meantime, we are starting to plan a big gotcha day/birthday party for her the first week in May. Details to follow! We want to celebrate with all of you who have been following her story. So if you are in California, mark your calendars for the first Saturday in May!
Love,
Kim
Yesterday when I picked Hope up from school, they mentioned that she fell asleep while she was eating her lunch, and slept for 2 hours. That is so unlike Hope to fall asleep midday, so I knew she must not be feeling good. Last night, I went out with some friends for birthday dessert, and Todd called me to say that Hope was acting really funny, and it seemed like she was having seizures. She had a super high fever too. We called 911, and they took her to the hospital. Turned out it was called febrile seizures, which are basically high fever induced. Her fever was 104-105! She had an ear infection, and was throwing up, so the doctors gave her an antibiotic and some ibuprofin and tylenol. Once her fever came down, we got to go home.
While we were sitting in the ER, she was sitting on my lap with just her diaper on. I was drawn to her belly button. I had never really looked closely at it before, but with nothing to do, I began to really examine it. I was feeling so much emotion, thinking that she at one time was attached to a cord that linked her to her birthmother. Someone who wasnt with her anymore. Someone who didnt know she was in the hospital with a fever. I felt a profound sense of loss for her birthmother, to not be able to experience this little treasure. I dont know who she is, or what the circumstances were. I know that she must think of her little girl often. Maybe she is in heaven now. Maybe she is somewhere in China wondering about the little girl she once knew. I felt an overwhelming feeling of thankfulness that I was with her. That somehow God saw it fit to match us with this little person, halfway across the world. That out of every child on the earth, she was the one that He picked. He knew somehow we would be a team. That somehow we would have what it was that this little girl needed. And that we needed her. That we get to share her life, and be her mommy and daddy. Family. Though I didn’t give birth to her, the feelings are not different. I’m still her mommy. Shes my girl. Im so glad.
If you have ever felt a pull on your heart for adoption, I just want to encourage you to go for it. Imagine life without a mommy to hold you when you’re sick. A daddy to tickle you and read you a book at night. There are so many kids out there, who really really need someone to love them. Could that be you?
Sorry for the delay in posting to our blog! The days have been filled with appointments and lots of activity! Hope is doing well. She started going to school on a regular basis at the Blind Childrens Learning Center, and that has been really helpful for her! She gets lots of therapies like speech, orientation and mobility, occupational therapy, and others that I cant remember right now. We are finding that she THRIVES with a routine, and school has been just the needed thing for her. She loves knowing what is coming next, and what to expect, and she is really enjoying her little class and awesome teachers. She is also starting to bloom in her talking skills. She tries out new words all the time, but is having trouble with pronouncing things properly. She tends to talk from her throat, like a ventriloquist, without moving her lips much. They will be working on that with her in speech therapy, and I know she will progress fast.
I was looking at pictures of our China journey the other day, and remembering her first days with us, and how difficult it was for her. How she was acting so aggressive, etc. Things sure have changed. She is the biggest snuggle bug ever, and a very gentle person. She still has her aggressive moments, but the majority of it has stopped. We are so glad that God led us down this path almost a whole year ago, and we cant imagine life without this little treasure.
We just had an exciting moment at the Phillips household. Hope just yelled out, “I LOVE YOU!” She has been saying it again and again over the past few minutes. I had to post, cuz it was so exciting over here! Her glasses are fixed, and she has had them since yesterday. If you smile at her up close, she will now smile back, which is something she used to not be able to do. It seems like the glasses are really helping! More to follow later…
When we first got the glasses, Hope wore them to school the next day and her teacher noticed a big difference in her behavior. She normally doesn’t play with the kids in her class, but on the day she had her glasses she was walking right up to kids and playing with them. She was also acting more confident and when they called her from across the room she would walk right over, as opposed to feeling her way over. We were all so excited, but since then we’ve been back on hold because the glasses broke that night. We took them in for repair the next day, and then they broke again an hour later. We just took them in again, and this time they have been sent back to the lab so they can try make the lenses sit in the frame better. So we wait… again… 🙂
It was really sad too because when Hope first realized her glasses were broken she had a huge crying fit, so we know that she likes them, so we are just hoping that the next time she can actually wear them for many days at a time so we can so if we notice some gradual improvements.
We got the call late this afternoon… We all happened to be together so we headed over to pick them up and got there right before the optometrist closed. We waited in anticipation and the optometrist came out with her little glasses! They are very very thick, like magnifying glasses and bubble shaped. He put them on her and she looked a bit surprised. Then she started tapping the glasses excitedly, and smiling. She was eating chips, tapping her glasses, and looking pretty well pleased.
We aren’t sure exactly how much she can see so far because she can’t tell us, so we’ll just be observing her to see how it goes. After adjusting her glasses she was set to go and we headed over to In-N-Out for a celebratory dinner. We must have been quite the sight as we hovered over her. We ended up telling a few people in line her story, and Hope was getting a little fan club right there on the spot. We even told the cashier and he must have appreciated it because he gave us a couple extra orders of fries. 🙂 As we ate dinner Hope had the cutest little smile on her face. The best way to describe it is that she seemed to have a look of relief on her face. She enjoyed eating her french fries and kept looking up at the lights. We were excited when our friends the Kellers showed up who happened to be eating dinner at In-N-Out as well, and we all got to have dinner together!
It definitely seemed that Hope was reaching for things that she normally wouldn’t have been able to see. We don’t know what her vision is like at this point, but we do know it’s better than it was! The doctor said it will probably take a while for her brain to program the eye to see, so we are thinking it will get better over time. We had no problem at all keeping the glasses on her, because she wasn’t trying to take them off, which was something we were really worried might happen. So far we just have some french fry grease to clean off them! Here are some pictures of our celebration….
Today was the 3 week marker of the wait for Hope’s glasses. We stopped by the store, anxiously, hoping they would be in. But we had bad news. Apparently the lab scratched one of the lenses, and had to re-order the materials, and are starting all over again making the glasses. Which means it could be up to another 3 weeks of a wait! Ahhh! Kind of frustrating!
On a fun and exciting note, Hope has taken a real liking to the ABC song. She practices it again and again all day. She is really starting to be able to pronounce the letters, and with all that practice, she is going to be a pro soon! Todd was taping her singing it tonight, and I will have him upload it asap for you all to hear!
We were surprised to hear from friends this week that we are the cover story for the Shaohannah’s Hope winter newsletter! Our copy just arrived in the mail today.. We scanned it and you can click on the images below to have a look.. 😉
This is the wonderful organization that gave us a generous adoption grant via their “Change for Orphans” campaign. Click here to revisit that story from October 2007.
