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….
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.
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!
As I was driving around town doing last minute Christmas shopping today with Hope in tow, I suddenly had a wave of overwhelming thankfulness. As I looked at her sitting in her little car seat in the rear view mirror, enjoying the Christmas music, I was just so glad that God shared His heart for orphans with us this year. What if He hadn’t shown us His great love for orphans? What if Hope was still in China living in an orphanage? I’m so glad that He revealed Himself in that way to us, and that we actually listened and did it, despite all the challenges and obstacles. Sometimes in life, the sweetest rewards come from challenging circumstances. This girl has rocked our world. She is amazing. Beautiful. Sweet. Fun. Happy. Warm. And Loved.
And so we thank our Heavenly Father this year for His Christmas blessings!
We turned in the prescription for the glasses today but were told that because the lenses are so thick and unique they have to special order and make them by hand so it takes longer…
Hope continues to amaze us. Just when it seemed like she wasn’t progressing at all in her speech, she has suddenly been starting to talk! Over the last week or so she began to sing the tune of ‘Row Row Row Your Boat’ the whole way through using the “Ra” sound. Then yesterday she said “Pat-ty-Cake”. Just a few minutes ago Jonathan was changing her outfit for me and pointed to her belly button and said, “belly button!” and she immediately started repeating him. She has said it at least 10 times so far and thinks it’s so funny. I think she is enjoying all the cheering and clapping and attention she is getting!
Here is some audio from this morning of Hope and Abigail singing:
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On another note, we are off to the dr. today to get a kidney ultrasound. With the melamine scare from China with baby formula, it is advised that any child born 2005 and later gets an ultrasound to check for kidney stones. We pray she doesn’t have any and will keep you updated regarding what they hopefully do not find!
Next week she goes in for another eye surgery to remove more scar tissue from her retina, and hopefully restore a little more vision ability. The dr. wasn’t too excited about a huge improvement the last time we saw him, but maybe this time! Updates to follow!
Things have been so busy these days! Hope is doing really well. Two weeks ago I went to visit a friend in Connecticut and Todd happily watched the kids for four whole days! He did an amazing job, and I was able to get some much needed rest and relaxation and girl time! Todd got some great bonding time in with Hope too while I was gone. He was an on the go dad, and took them all to school, to the park, swimming, the mall, to Abigail’s American Girl club meeting, to the beach, out to eat, and even to Disneyland! Way to go Daddy!
We had our first big meeting with Hope’s preschool recently where they gave us an update and also told us the various goals they have set for her to meet this year. They were really impressed with the way that she has developed an understanding of English so quickly, and also with her desire to please. She is very motivated to learn, and they all continued to remark at how smart she is. That’s my girl! 🙂
She just said her first sentence the other day. When she was playing ball with Daddy she said, “kick it.” and kicked the ball. It’s so cute to hear her little voice forming words. She has a sweet little breathy kind of voice. She has also been becoming much much more relaxed these days. Many of the aggressive behaviors have completely stopped, and she is generally a happy girl it seems. She loves to giggle, and will often giggle out of the blue for no apparent reason. I always wonder what she is thinking about!!! She also loves to be swung up in the air like a flying trapeze. She is pretty daring, and isn’t afraid when she is in motion. Todd is going to post a video showcasing some of Hope’s acrobatic abilities soon so stay tuned! She loves spinning around, going on swings, doing somersaults, flips, just about anything that involves moving. She truly is a treasure!
Well it’s past midnight, so I’d better get to bed! I will try to write more frequently!
My heart was swelling with emotion this morning after reading the latest post from the family who just adopted the little girl with heart issues from China. If you haven’t been following their story, they went to China to pick up their daughter and upon arrival learned she was in the hospital fighting for her life. They didn’t know if she would live but they prayed and made it out of China. Now they are in the hospital and she is getting surgery this morning. In the meantime they have been trying to bond as a family in the midst of nurses, wires, monitors, and a hospital bed. The kind of endurance this mom has shown has rocked me. It’s a display of the love that God has for us. Even when we are unable to return it, He is right there loving us through our deepest challenges. You can follow their story here, but get your tissues out first:
