No Coughing YEEAAAAA!!!!

Will its day five and still no coughing! Today is her last day of the antibiotic but were still continuing one of her nebulizer treatments. This is a small post today just to let anyone who reads this know she is ok.



This is an old picture of Reka I found I just thought it was so cute.



This is a picture of Reka with her blanket from Blankets for SMA. A nurse of a patient who has SMA make these blankets for all the children for free they just ask for pictures of them.

Sick Again

Will its that season again. Reka is sick again, sometimes it feels like it never ends. We went to Houston for Chinese New Year and she had a little cough only in the morning and evenings. But by Friday night it was a full fledged hours upon hours of coughing and when you have SMA and your damn insurance denies you a cough assist/suckson machine its helllllll on earth. Its so hard to see your child trying to cough but doesn't have the muscle strength to get it out. Plus being up all night living off 2 hours a sleep a day doesn't help hoping they don't choke to death on their spit. I'm telling you god give me strength because I'm about to lose it sometimes I wonder if I'm going to have the strength for this disease. We finally got home back in Corpus last night. (I don't live in Houston with my husband because of waiting for doctors and its so polluted) Today I took her to the doctor and she was very uneasy on the way she was breathing. She gave me four prescriptions.


The is called Prednisolone SOD PHOS this is a liquid steroid she takes orally twice a day for five days. This help open her airway used for the wheezing.


All you moms know this Amoxicillin which is to kill infection. She has to take this twice a day for ten days.


This is will you can see the label it is also to help open her airway so she can breath and cough better. This is also twice a day and I have no idea when the doctor wants to stop this one probably when cold season is gone. She said it will help her so that she wont get sick so often. This in used in a nebulizer.


Last but not least this is no stranger for her Albuterol Sulfate 0.083. She was actually prescribed this at her first pulmonary apt. back in March of last year because when they took x-rays of her lungs they found pockets in them but they are gone. This one she has to take every 4-6 hours for cough and or wheezing. This is also used in a nebulizer.

Here are a couple of pictures of Reka using her nebulizer.







These are a picture of a cold air humidifier which is on all day when she is coughing and an air purifier which is on all day whether we are here or not. I actually just purchased one from Oreck online $300 but thank god they do monthly payments. YEEEEAAAA!!!





OK this posting is getting long but to all who see this please pray for my little girl the doctor wants to see her again tomorrow if she hasn't approved a little. Which means maybe a long hospital stay eeeeeeeeee!!

Getting Settled

Will now that I'm settled here in Portland I can finally post my blog. So far so good. She is starting her occupational therapy and teaching this week. She seemed pretty calm with them which is great. We will probably have to go to Driscoll hospital for her physical therapy. As for Reka she has been doing a lot better. I've noticed that her eating and bowel movement have gotten better. She has grown and inch and gained 3/4 of a pound which she hasn't done all year. Her sleeping is better less snoring its nice to breath fresh air again even my skin is getting better. I have received her package for the MDA which I send off last week so hopefully we should be hearing from them soon to start with their program. Other than that nothing much else going on here. So on to the pictures!!


I went to the kitchen to wash some dishes and when I can back my daughter became a face painter!)



Another turning my back and she is passed out sitting up looks pretty comfy to me!



Here we are eating at the restaurant where my friend works little pricy but thats why its good to eat were a friend works you dont always pay for what you ordered!

Happy Belated Birthday

Ok ok, yes my daughters birthday was last month but I've been lazy posting blogs. My daughters therapist want to keep up with her. They have been great with her and I enjoyed their company either to gossip or vent sorry guys. Will back to her birthday we had it at home with all the family his side and mine. My husband cooked with the help of his oldest sister it was so gooooooooood, even Lisa's son Gavin liked the chicken. (He is a very picky eater) Will be have about 9 more days to go before we move to Portland maybe less if my husband leaves sooner. I can't wait I'll be closer to friends and my family; its been pretty lonely here especially since Dong has been working out of state for over a year but totally understanding that I'm leaving. Also the living arrangement isn't the greatest. Will anyway on to the pictures

This first pictures is my dad asking about this sauce, he could not stop talking about it. In this picture my dad, then in the blue shirt is my husbands oldest sister (first born in a clan of 8) behind her is her youngest daughter Ting, then LuLu boyfriend Robert, LuLu and Chen the oldest daughter of the oldest sister.

Here is a close up of some of the food and that sauce my dad is just crazy over.

Here's Lisa's oldest son just enjoying himself.


Here just sitting pretty.

Lucion again nothing much going on here.

Gavin ate a whole plate of these.

Munching on a spring roll.

NO PICTURES PLEASE!!!!!!

Reka's personal bodyguard.

Ok all ready

Ok I'm really going to keep up with blog this time seriously Laura 3 months of nothing. Will I guess I'm more of a myspace person but anyway. Will this month Reka and I are moving to Portland, TX for a little while. I've patiently waited 7 month if not more for MDA in Houston to admit my daughter(for those who don't know what MDA is think of Jerry's Kids). Yes 7 months so I have decided to take another step, one that is closer to my family and friends. My husband wont be coming because he has to work, actually for over a year he has been working in Arizona and California so we haven't seen so much of him, but he is understanding about it. Ok back to Reka she has been doing good only on major sickness and I wouldn't really call it too bad compared to what some of the other parents have put up with. She is a little congested right now but couple of treatment with the nebulizer has been doing great. Will I'll post more when we arrive.

Braces not the ones on your teeth

I finally took a picture of her with her brace on and she doesn't like it at all. It takes about and hour just for her to get use to it. In my opinion it just doesn't seem comfortable but luckily on the tenth of June we have her brace check up.

This is the front view as most of you have guessed. I picked out the butterfly design.
Side View

Catch up on pics and videos

Will checking from my date of blog its been a while so I thought I'd drop a few lines. Will we were going to start the Amino Acid diet but its so hard to find flavors to make it taste good so her dietitian will be looking into something else. As for Reka she did have a bad cold for about 2 weeks. In these pictures she is using the nebulizer to help open up her airways to cough up all the gunk. We did spend one day in the hospital checked her lungs and they were clear thank god so no hospital stay. She still has the bruise on her hand were they stuck her with the iv needle. Will on to the pictures.

As you can see in this picture she is not happy with the treatment.


But a couple of days later she got use to it with distractions of mommy's makeup, her favorite past time.

This is the most recent video I have of Reka she just woke up and was watching Diego(not sure I spelled that right). I sit her sideways from the TV sometimes so she has to turn her head to watch it helps with the neck muscles so they don't loss strength.

This was the cutest picture of Lucion and Reka with their hair up. These two will be buddies for life I tell you. As for updates I will be keeping up with this blog a lot more every week if i can. Next month she has another brace check up I'll post pictures of her in her brace later, and pulmonary check up so wish up luck.

Chinese New Year

Will here are pictures I promised you guys for the Chinese New Year. Her cousin Yan bought this outfit for her last year in New York and it finally fit. Sadly to say my daughter is 18 months and she fits in 12 month cloths. We had fun ate alot, got money you know the whole ordeal. Will her are the pictures. The very last picture is about 1/8th of my husbands family here they are holding Reka is his oldest sister Lisa, right is Lucy, in yellow the oldest sisters daughter Yan, right LuLu the one in pink is just a friend of Yan and in front with the peace sign is Ting Yans younger sister.

Pony Tails

This video was just taken yesterday, my daughter finally has enough hair for me to put in cute little ponytails. I think she was watching blues clues thats why shes not so interested in the video. As my cousin Riva we celebrated Chinese New Years. I think I gain about 10 more pounds something I don't need. I'll post those pictures up when my niece sends them to me, her camera takes much better pictures then mine. Also on Saturday we celebrated his oldest sisters 50th birthday, it wasnt really her birthday but when you turn 50, 60, and so on the week of New Year you celebrate their birthday or coming of age I don't really know. Honestly I don't understand the whole Chinese New Year but they sure do eat. Also they give money to children 18 and under I'll tell you what I don't think I've seen so many $100 bills at one time, I think the smallest amount she got was $50 wooooooooooow. Unfortunately my husband was in California working so he missed it all. Now to Reka she has therapy 3 times a week twice with a physical therapist and once with a occupational therapist, also twice a month she has a teacher, and every other month a nutritionist. Unfortunealty she hasnt been eating alot but she is drinking that pediasure about 3 times a day, but she did eat some chinese food this New Year but only at one restaurant. She sucked the spoon dry on the soup she also enjoyed japanese tofu, scallops, oranges, thats about it she only really has 4 teeth so theirs alot of foods she still cant eat but five are already starting to pop out. They have a mind of their own. Also next month she will go and see a pulmonary Dr and for those who dont know what that is and honestly I dont fully understand they check the lungs breathing and so forth. Will I'll leave you at that and check out my youtube.com key word lzhang1076 for other videos. God Bless

More Doctors and Therapist

This video shows a little bit of what we do in occupational therapy. Last week we went to the neurologist hes a real nice guy he ran the EMG test at least I think that's what its called. They stuck a small needle in her legs and arms to listen to her muscles, he was the one who told the genetics Dr to run the sma test. Smart man. He also gave me the number to MDA which I'm still waiting in the mail for the package to fill out so we could get her started with their Dr. It's probably in the mail now I haven't cked it yet. We have a new physical therapy company because the one she had ECI can only do 4 times a month at the most and we needed at least 3 times a week. The one we have now called Special Kids is coming twice a week for now. We still have our old OT because they wont have one available until March. Talking about March we will be going to the pulmonary Dr. to have her lungs cked. Other than that nothing much else going on, finally catching up on my Internet classes. Such as life. Anyway thanks for your prayers, concerns and offers to help us. Love ya Laura and Reka

Just hanging

Will she was dancing then when I started video taping her she stopped. Yesterday I was busy making calls to SSI so I could get traditional insurance so there wont be any delays when we go to Dr. when she needs test run. Also called her pediatrician to get a referral so she could have physical and occupational therapy 3-4 times a week how lovely. And last her neurologist which luckily is in 2 weeks and not 2 months love her genetics Dr. he has been working miracles for her. Luckily she doesn't have type I SMA it is type II. In general she will never walk, she will need assistance in little things we take for granite like changing cloths, taking a bath, you know basic stuff. Luckily they do have a longer life span up to 20-40 yrs compared to 1-5. I actually met a lady on youtube who is 26 married and is doing great she can even put on make up. Will just keep praying for her and if you ever get a chance and want to help her and other kids out make donations at MDA you know with the Jerry Lewis guy or when you go to the gas store and they have those shamrocks donate a couple of dollars. I also have an account with youtube where you can see more videos of her the address is http://www.youtube.com/lzhang1076 Thank you and until next time god bless.

Just like dad

In this picture she is sleeping just like her father. As some you know we did get the results back. She does have sma we dont know which type we have a dr. apt. tomorrow and we will go from there. So just ck back.

Trying to keep up

Will I'm going to try and keep up with this blog so everyone can see Rekas progress. Still no word from the Doctor but thank you for your prayers. Lisa her kids and Danna will be here tomorrow. I have to meet them at the Waffle House in Richmond about 10 miles out of Houston cause they don't know the way. Lisa has been here twice and still is scared she will get lost crazy lady. As you can see I've been doing videos instead of pictures, I love modern technology. Saturday my husband will start driving from Arizonia he said he should be here in four days which will be Christmas. Thats the same day my parents, D.J. and Lisa's husband are coming. This will be my first time cooking holiday lunch wish me and who every helps me luck. Anywho I'll load more pictures when the family comes. Hope everyone has a Merry Christmas.

It's Almost That Time

Chrismas what a wonderful time of year. All of my family is coming this holiday which is great I dont have to drive down this year. Daddy will be here in about four days, my two sisters and her kids will be here on Friday. Mom and Dad will be driving up here on Christmas Day. Hehe. Still no results yet hopefully I'll get them this or next week. So to all of you Merry Christmas and Happy New Year.

It's Been A Long Time

It's been quite a while since I've blogged. Been busy with Reka and her doctor apt. She's been doing pretty good. Just recently as all of you know we are waiting on a certain scary test she took on the 9th of this month. It's called SMA type I. Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

Type I
Type I SMA is also called Werdnig-Hoffmann Disease. The diagnosis of children with this type is usually made before 6 months of age and in the majority of cases the diagnosis is made before 3 months of age. Some mothers even note decreased movement in of the final months of their pregnancy.
Usually a child with Type I is never able to lift his/her head or accomplish the normal motor skills expected early on in infancy. They generally have poor head control, and may not kick their legs as vigorously as they should, or bear weight on their legs. They do not achieve the ability to sit up unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions. The tongue may show atrophy, and rippling movements or fine tremors, also called fasiculations. There is weakness of the intercostal muscles (the muscles between the ribs) that help expand the chest, and the chest is often smaller than usual. The strongest breathing muscle in an SMA patient is the diaphragm. As a result, the patient appears to breath with their stomach muscles. The chest may appear concave (sunken in) due to the diaphragmatic (tummy) breathing. Also due to this type of breathing, the lungs may not fully develop, the cough is very weak, and it may be difficult to take deep enough breaths while sleeping to maintain normal oxygen and carbon dioxide levels.

I know this is very long i pasted it from another web site just to give you a brief description. But to be honest with you I don't feel its that sever she does sit up by herself for long periods of time, eat just fine maybe not as much as I would like but the doctor told me not to push it just give her what she wants and her breathing is normal. The waiting is the hardest part for me but I should know something this Friday or next so I will definitely keep you all posted. Just pray for my little girl and god bless you all

Finished Product

Will here is the finish product with her new pink and butterfly blanket set I got with grandmas money. Man baby sheets are just as much as big bed sheets.


This is her checking out the mobile that came with it.



Here she is just examining her new crib.

New Bed

With the money auntie, cousins, and grandma gave me for Rekas Birthday I got her a new bed. One of those convertible ones. This picture is the injuries i substained while putting it together. These beds are definitely a two man job. It only took me about 3 hours and I had to re due one part three times. But after all that work here is the finished product.

Happy Birthday To Me

Will its Reka's first birthday!!!!! Still looks like an eight month old. She got some cute outfits from her aunt and niece, a bracelet with her name on it from Ting and money from everyone. Will their will be more pictures of it later.

More Pictures

Dad's been wanting to see more pictures of his little girl. Right now he's in Arizona where he's been since the middle of June working for someone who recently got married in China. Talked to him today said he should be coming in about two more weeks. Will I'm having problems posting more pictures try again later.

The Simpsons

I just recently looked at my sisters myspace and saw she did the look alike Simpson so I decided to do one of my daughter and me. I'll tell you what I look better as a Simpson.

Almost One

Will its almost birthday time, six day to be exact. Its amazing how fast they grow will with the exception of my child she still looks likes shes six to eight months. One of the lady's from ECI came yesterday to fill out the paper work for her physical therapy. This Tuesday she will do an evaluation to see if she needs it. Watching her the lady said she is doing good just need to do some exercises with her to build more muscles in her legs and arms.

Here she is sleeping the only time I have to myself. Lately she has been so fussy every time I leave the room, before I could sit her down with some toys and play on the computer or do my homework. Will talking about homework I have 2 days left for summer school I better finish.

Going Home

Today we went back home after staying with my parents for the week. I'm finally in the 20th century and bought a digital camera. After about two days of experimenting with it I found it has different frames. I thought this fit for this article. Will not much to say tomorrow the physical therapist is coming to our house to examine her and see if she is qualified. My little girl isn't up to speed with the crawling and walking but everything else is fine. Will its late and I have to wake up early so see you all later.