Sunday, March 9, 2014

Update March 9th doctors and treatment

As many of you know already Shi yu went to a pediatric ophthalmologist and we were told she needed corrective glasses for her left eye that sometimes doesn't line up with the right eye. We were told that if we let it go her brain would eventually stop communicating with that eye as she would slowly stop using it and she could go blind in it. Since her brain is still developing it can also affect other brain functions. She is also a tiny bit near sighted. Picking the glasses came down to choosing between 2 frames because that's just all there is for toddlers. We did have an array of color choices which ranged from white, pink, yellow, red, black green, blue, etc.. The down fall was the color samples were the size of a lentil. We chose the gray. Not sure why but I didn't like any of the other colors. I guess they do make her look intelligent. My husband was sure that she would never leave them on and I had serious doubts myself lol. But she has been very cooperative so far!  We have also gone to a physiatrist (so?) Who is going to give her botox shots in the hip and leg area to help loosen the tightness of the muscles and will help her to walk and not scissor her legs so much. He is also going to give her phen which kills some of the nerve endings (they grow back). Because of the phen, she will need to go under anesthesia as it is a complicated process. While she is under they will also do an mri to see what part of the brain is affected causing the cerebral palsy. I'm not sure but I think they may be able to tell us what happened. It's all a little scary. I dread doing this but I have researched these treatments and they seem to have very good results. But there are also risks. She is also taking medication 3 times a day for muscle relaxation. It makes her a little tired and I hate that. I am hoping that side affect wears off soon.  Shi yu continues to do well with her physical and occupational therapies. Her PT says she is having trouble keeping up with Shi yu lol.Shi yu is still a little reserved with her speech therapy but I'm sure that will improve. She gets shy about taking around anyone but Dan and I. Shi yu has not put much weight on but they say that could be because her activity level is so much higher now then what it was in China. When we first got her she wouldn't stop eating. She has slowed down because I think she feels secure that she doesn't have to worry any more  About going hungry. She has grown 3 inches! That's hard to believe but it's true. It's only been 6 months! By US CDC standards she is in the 17th percentile of height and weight for her age but the CDC  chart for Asian children shows she is in the 75th percentile. So we are happy with that. I wish the doctors here would use the Asian chart for her but it's not in their computer.  We discovered she adores lo mein noodles. She literally went crazy with excitement over them. I wonder if they were a treat for her when she was in the orphanage. I do know that the part of China she is from us more lo mein noodles then rice which she also loves. I'm going to try and make them for her. They seem simple enough. And it's funny how she knows to suck them up. Off there are chop sucks insight she demand I use them but I am not very good at it. Trust me I have tried. She also loves spaghetti...probably because of the noodles. Sorry looks like I started rambling lol. We are so grateful to have Shi yu. We couldn't imagine life without her. She has given us so many gifts . She has given me renewed life and purpose. For that I will be forever grateful. She has given her Dan the chance to be a dad and have a daughter. You can only understand the love one has for their child when you have your own. Now he knows. We are very blessed.

Monday, February 10, 2014

Doctor visit

Today was Shi Yu's check up with Dr Handler. She is the doctor that oversees everything. She was impressed with the flexibility Shi Yu has gained. It really is tremendous. The problem is more the muscle tone. Muscle tone comes from the brain and in cp it is that part of the brain that was damaged. The tone in her abductors (they are at the hip joint) is very high and is causing the scissoring of her legs which cause her to step on her feet while trying to walk as well as walk on her toes.  She really believes Shi Yu will walk. In the meantime she wants her to be fitted with another apparatus that will help separate her legs and help her walking. She is also referring her to another doctor, a physiatrist, that can help this with botox shots. The botox will paralyze only parts of the muscle and help decrease the high tone. They will put her to sleep for these shots and they last about 6 months. It was all pretty much what I expected to hear except for the new apparatus. But everything is temporary to reach the goal so it's ok. Dan was pretty quiet when we left. I asked him what was wrong and he said he didn't know. That he keeps hoping someone will say they have the miracle remedy for her. I felt bad for him. He loves Shi Yu so much.  I told him the road is just a little longer but the outcome will be the same and she will be fine.  And she will be. She will be the best that she can be and that's all that matters. She is already so amazing and smart and funny and loving. And very determined.Shi Yu has made it through being abandoned on the street, surviving an orphanage in China, surviving medical issues that most would not have survived, so I know she has got this! Just takes time and hard work. We went out to eat afterwords and as a treat night her a new book and some pretty spiffy sunglasses in hopes we will see spring soon lol.

Saturday, February 1, 2014

Therapy and more

Yesterday Shi Yu started swim therapy. Daddy took her because this mama doesn't own a bathing suit and wouldn't be caught dead in one!  I thought she would love it.  The water is heated nice and warm! But no. The second the therapist took her that was it. I don't blame Shi Yu though. She is still very least of new people and then you through in a swimming pool of water? So it turned into a kind of get to know you affair. Today she had her speech evaluation at the place she now gets her physical and occupational therapy. It was so much more realistic then the first place she had it where it was completely ignored that she had only been in this country 2 months, was just learning English, had never been out of an orphanage and therefore couldn't pick out a picture of a race car, orange, cow, bunny etc.. she lived the therapist. And I have to say the therapist fell in love with her lol.  Ask of her therapists think she is so special (yes I am bragging). It's not just that she is so cute, it's the drive and determination she had as well as how easy she is too work with. They can't believe that she came from the god awful place she came from and it's such a happy sweet little girl. Sometimes I can't believe it either. She is such a quick learner!  Sorry, hit side tracked in my pride. Any way, The speech therapist assessed her and feels she will be taking up a storm in no time. So we will be adding speech therapy to our busy schedule. Right now she has physical therapy twice a week, occupational therapy once a week, doctors appointments in between, as well as dealing with other agencies offering help and now she will have speech therapy one or two times a week. We are very busy lol. But each time she goes to one of these things means more improvement. And I love it. Dan is still wonderful about bring at any appointment he can. He is a great daddy. He just adores her. And she adores him.  We got good news from the blood work the neurologist did. No lead poisoning , no fragile x syndrome, and no something else he tested for.  She was also tested for intestinal parasites (common in China adoptions) and some other weird things and all tests came back negative.  Wow, this was going to be a short post. Not sure what happened lol. But it's all good news!

Friday, January 24, 2014

Way over due!

Sorry it's taken so long to update. We have had so many doctor and therapy appts!  Shi Yu has settled in so well. The inky sign of home sickness I see is if I have to wake her up. I think she expects to see the orphanage and it's surprised when she sees where she is at. She cries fir a long time. Actually she ends up dining sadly. It breaks my heart. Luckily she doesn't have to be written up very often. Other then that she is adjusting wonderfully! She is such a happy little girl. We changed the place where she had all of her therapy. I took it for granted that the original place was good (I had nothing to compare it to). When an organization called Help Me Grow (works with children with disabilities), came to the house and I saw the therapy they did I was blown away and knew I had to change. So far I really like the new place. They are lively, aggressive, and I am seeing better results. Shi Yu has just started in a walker. We were given a loner until the one that was ordered comes in. It is such a joy to see her standing upright! At this point she is just getting used to it and it will be a bit before she can actually walk alone in it. The therapists are amazed at how quickly she catches on so I don't think it will take to long. The walker is made to change over time using less and less support until it is stripped down to just a walker (frame). Hopefully eventually she won't even need that. She attend physical therapy twice a week, occupational therapy piece a week, and is starting aqua therapy next week. Shi Yu had to have a swallow study because she chokes very easily when she drinks. It showed that she was aspirating everything she swallowed. It also showed that she sometimes cleared it. That part amazed them because they couldn't figure out how she did that. They were also amazed that she had lived from birth having this issue. Most babies would due without immediate surgery. We were referred to an ENT doctor who put a score down her nose and into her throat. With this procedure he can only go so far without putting her to sleep. Based on what he could see, he could find no reason for the aspirating. He suggested the next procedure of putting her to sleep. We are still debating that one since she has been ok all this time. She is still dealing with the rash she brought back from China. Doctors say it can take more then a year, even up to 5 years to go away. Urgh! She is going for her second speech therapy evaluation in Saturday (since we changed places it needs to be done again). After that she will begin having speech therapy once a week. She currently says almost 30 words which is great considering she came from China less then 5 months ago. It's especially great because we were originally told she didn't speak at all and didn't make sound when she laughed!  She adores watching sesame street. She had learned so much from it! She lives Elmo and of course that is one of the words she says. She says cookie too. She also loves mini mouse. Elmo and Mini are her 2 favorite characters. She adores books and will spend a great deal of time looking at the pictures. She likes to point to the pictures and have you tell her what they are, over and over again. I would live to go on a book buying spree with her! She loves the bookstore! She would rather look at books then play with toys! I show her YouTube videos of guitar and piano playing just to broaden her horizons. She is like a little sponge right now just soaking everything up. She is still a major daddy's girl and squeals when he comes home from work. He is such a wonderful daddy. He will get up with her at night, change diapers, give her a bath, anything she needs. He is trying his hardest to learn even the most basic children's songs lol. Shi Yu is getting much better with people she doesn't know. She warns up to them much quicker now. Her first Christmas was wonderful! If course she enjoyed the gift wrap and boxes the most.  She loved the new clothes she got. It's funny to see one so young appreciate and be so proud of the clothes she gets. I know she never had her own in the orphanage but I would think she was too young to understand. Who knows, maybe she just has an eye for pretty clothes.