Reka Pica

Looking Threw Pictures

2011-04-09T22:42:00.003-05:00

I was just looking threw some of the pictures I have in my computer files and noticed I never did a blog on her sleep study. Its not much too talk about they just connected a lot of ok I'm having a brain fart cant think of the word, but take a look at the pictures you will know what I'm talking about. She has had 3 sleep studies and all of them have come out great, but they still wanted to put her on bi-pap so she wouldn't have to work so hard breathing when shes sleeping. They said it was like exercise for her and wearing out her body a little. But as you know she is in the hospital right now so we don't have her connected to it yet actually I haven't gotten it from Apria yet got to love insurance but hate it at the same time. Will on to the pictures!

This is after they connect all the dodads but you cant see all of the ones attached to her head, but if you look at the board next to her you see how many she has attached LOADS!

This is just 2 separate angles of her wearing the c-pap the bi-pap looks the same but they tried the c-pap first and decided it would be better for her to be on bi-pap. But I don't have any pictures from that sleep study!

This is her after all the tape and gunk was taken off!

Daily Routine Chapter 2

2011-01-07T21:17:00.003-06:00

Will a new year has come upon us and so far nothing’s changed. But that’s a good thing! Will this is segment 2 of Reka’s daily life. The first one I did was about her breathing treatments. The only thing that has changed about that is she is no longer on Flovent which was a daily inhaler her Pulmonologist had her on. Now this one is of her daily feedings. Now rests assure she hasn’t lost her swallow yet, and she does have therapy for that which she does together with her physical therapist. At this time she takes little sips of soda and juice. Also she snacks on Pringles STIX Honey Buttered flavored! She doesn’t like water but that’s no problem because that goes with her feedings. She has 4 feedings a day which she receives 225 ml of a combination of Boost Kid’s Essential 1.5 which basically means each ml is 1.5 calories instead of 1 because before she stayed at 20 pounds for over a yr and they were worried about that. Since being on this formula for about 6 months she has gained 5-7 pounds. Basically I pour 2 boxes of Boost in her feeding bags and fill the rest with water. Of course later I have to put more water in it. It’s already pre-set so basically I push the power button, keep setting button, auto prime button which pumps the liquid threw to the end and part of it I have to hold down the prime pump button tell the milk comes out the other end. Then I connect her to it and push run, and when it’s done or empty it makes a loud beeping noise and then I push the power down button (which Lucion loves to do when he’s here). And that’s about it now sometimes especially since she started school we don’t get her full feedings done. So usually the last one we do overnight at a low rate of 30 ml hour (1 ounce) tell she gets the full feeding. This will have to stop once we get her bi-pap machine (story for another time). Simple as that!

This is just a basic picture of her feeding bag.

Another basic picture of her pump which is a plug in recharger.

Ok so by now you know I totally need a new camera. This one I've had since she was born. It does not focus like I want. But anywho this is her mickey button connected to the pump.

Ok these are her med. 1st is Miralax cause she still gets constipated which she gets 1 tsp. a day. 2nd is Zyrtec she gets 1/2 tsp threw her g-tube. 3rd Zantac which also goes threw her g-tube thats 1ml 2 times a day. They gave her that cause her inhailers can cause heartburn which brings me to # 4. This is Xopenex which is only used when she is a little congested not a daily thing! 5th is Veramyst nose spray to help keep those nostril airways open!

And of course this is her posing while on the pump!

As for how her heath is she’s been doing good, no major sicknesses. One minor one that lasted about 1 week, 1 trip to the dr. and 10 days of antibiotics and 3 breathing treatments a day! I’ve actually been the one getting sick more. The Monday after Christmas Reka and I took a little shopping trip to San Antonio with the money her daddy gave both of us for presents. We went to the Northstar Mall; first we hit the Disney store, and Justice for Reka. And for me I hit my Lush in Macy’s. For those who don’t know what Lush is it’s a bath and body store where everything is homemade. It’s got the yummiest smelling want to eat soaps. I spent way over my limit there. After that we went to Olive Garden because Reka loves to eat the breadsticks with Alfredo sauce and I got my usual soup and salad (so tired of eating there). And what luck connected to their parking lot in the back TARGET my favorite shopping store. We don’t have one here in Alice the closes is Corpus. There we finished using her Christmas money on 2 toys and I think 6 shirts which she badly needed. After that we went home. Will time for Reka’s feeding how ironic then shower, bedtime story, and bed. So goodnight to all!

Long Over Due

2010-11-19T22:02:00.004-06:00

This year has been a pretty good one, we moved in with mom back in June 2009. Reka hasn’t had any hospital stays this past year which I think has a lot to do with her breathing equipment. (Posted on my last blog) She is still on her feeding pump which I'll upload on my blog of what it looks like and how it works. She still see's a Neurologist, Orthotics, and Pulmonologist every 6 months. Her Nuero and Ortho are in Corpus, but her Pulmo is up in Houston and that gives her a chance to see her dad. She also has Physical, Occupational, and Swallow therapy which we also do in Corpus (except occupational it’s the only one they have in this little town). In PT she is starting to practice using a mechanical chair, in ST they do different massages with her lips, cheeks, and have her stick out her tongue and move it around. I also got a letter from Medicaid saying they have finally approved her stander which will be another article I'll post in my blog once we get it home and put her in it. And thank goodness they approved it I'm getting tired of having to bring the bad, mean, angry, cussing side of me to get these things approved. Never knew I had that much anger in me, but when it comes to your kids you do what you got to do! Almost forgot to mention she does go to MDA every 6 months. So far they haven’t really done anything for her but she has most of the things they provide; she already has therapy, doctors, etc. But the big thing is the MDA camp she can start going to when she turns 6. This is $800 for a week but so worth it for these kids. They use to be able to help out with families that couldn’t afford it but because they have been losing funding, not so much now. They also use to help families with $2000 for any piece of equipment insurance couldn’t pay or was taking too long to approve but lost that as well. Reka is in her first year of school. Pre-K, she is in a special class where her and another little girl like her are the only girls in the class, the rest are boys. I think there are 8-10 kids in the class. Were still trying to figure out how long to keep her in school so she doesn’t get worn out too much. Right now she goes about 4 hours. I take her in around 9:30 right before I go to work, and pick her up around 2 when I get out if I’m not closing lunch if so then Lisa picks her up. I also started working part part time at Panda Chinese Restaurant. It gives me a chance to get out and socialize again, something I missed so much! So far in school she hasn’t gotten sick which I was actually worried about. I might have had to keep her out about 5 separate days since she started. She actually has the same teacher Gavin had before they started the class for Autistic children at another school. And the teacher’s aid is Ms. Berry but Reka calls her Blueberry, I thought that was so cute. Other than that she has been doing great her health is great the doctors praise me on how good she looks which help me feel like I'm doing something right with this awful disease. Sometimes I feel so lost, but thanks to MySpace and Face book I have been able to meet other parents to help me along the way.

Update

2010-03-03T12:59:00.002-06:00

Just thought I would give everyone who reads this a small update of Reka and myself. Reka was sick all month of January, numerous amount of doctor and ER visits, but her lungs were always clear and no infection. My opinion, allergies, sinuses, who knows. Next week we are going to Houston 1.) to see the family and 2.) Pulmonologist appointment. Unfortunately, the one here in Corpus decided to leave in October, (but stayed an extra month) and went to Maryland. Now the closes one was Houston, but with the help of my friend because of my lack of internet skills she found a list of numbers to Pulmonologist in San Antonio. Thank god called the list and found only one that knows and takes children with SMA. YYYYYYEEEEEEEAAAAAA!!!!! It's only a two hour drive compared to four. Now the Pulmonolgist department here is suppose to get a new doctor in April, but the question is does he know anything about SMA? If not looks like I'll be applying for assisted living in San Antonio, but luckily I do have a friend that lives about 45 minutes away, my family would only be 2 hours away, and my in laws would only be two and a half to three hours instead of four. Which in my opinion would be great, I love San Antonio, its close enough I could visit more often then when I lived in Houston. So I'll be waiting for that call from the doctor to tell me, I'm hopeful he will but such as life. I'm sure your asking why would I move to another city just for a doctor, because this is THE doctor for children with this disease. Read about it if you want more information. As for me don't do much other then take care of my daughter, would love to work but cant find a job that will let me have winters and summers off, and sick live for my daughters care. On another note Reka's dad is coming back to America, no luck in the job district. At least he will be able to see her more often. Sorry no pictures, but I am going to try and get my section 2 of my 3 part on daily life with Reka. Hope all is well with everyone and God Bless!

Daily Rountines Chapter 1

2009-11-16T19:23:00.016-06:00

OK bet your wondering why I put Chapter 1 in the title, because this is going to be a three part of my daily routine with Reka. Chapter 1 Breathing Treatment, this is done twice a day after her first and last feeding. Under each picture I will describe the procedure I go threw.

1.) We place the vest underneath.

2.) We place a blue foam around her g-tube so it doesn't shake around and hurt her.

3.) I strap it on from the front first then over the shoulders.

4.) Before we start the vest she inhailes 1 puff at a time for ten breaths twice of FLovent. This inhailer is a daily routine her pulmonologist started her on almost a year ago.

5.) This inhailer is only used in cases of coughing or wheezing, but she has been congested for 2 months so thats why I'm using it. Same procedure as the Flovent but I do 2-4 puffs. This is called Xopenex.

6.) This is her first setting of the vest, 10 presure for 10 minutes.

7.) Second setting 12, for 10 minutes. So this whole process take 20 minutes. Bet your wondering what I do all that time, will check out my next pic.

Yup you guessed it play on the computer, or find something to clean.

8.) Before we start the cough assist I spray both nostriles with saline to help loosen the mucas.

9.)After the vibrating vest she does her cough assist. Of course you know she doesnt hold it on her own, but its hard to take a picture when one hand is holding the back of her head and the other is holding the face mask. She does 4 sets of 5 breaths 5th set for 10 breaths, each inhail and exhale under 2 seconds, with 2 second breaks inbetween each one.

Just a picture if you forgot what the cough assist looked like.

This is just a picture of when the cough assist blows air out look at that hair fly!

10.) Inbetween each set with the cough assit I suction for mucus from each nostrils and her troat. Next picture is not for the faint at heart. Just kidding.

This is a picture of her mucus, right now its clear so that a great sign.

I know this looks like a lot of work but its pretty simple once you get use to the routine. I estimate all of this takes about 30 minutes of our time and it's all worth it to keep her from spending time in the hospital or worse. But as for her she is doing great I am a little worried about this congestion problem nothing is draining it just seems to be stuck in her nasal passage, so tomorrow will be my third call to the Dr. to see if they want her to come in again, last two times her lungs were clear. But it never hurts to check again, poor baby I think she has had over 20 x-rays by now and shes only 3!

Bayfest

2009-09-30T17:12:00.004-05:00

How to describe Bayfest. HOTTTTTTTTTTTTTTTTTTTTTTTTTTTTT!! My friends and I went there Sunday only so Reka could meet and great with Dora and Diego. So we munched first on gorditas, funnel cake, and snow cones. Wish I could of taking pictures but anyone who knows me knows I don't like the heat, so I was getting a little impatient. Exactly at 3pm we found the tent that Dora was at but they didn't have another showing until 3:30, (and on the website it said 3 figures). So we found a shade sat there for 30 minutes, then exactly at 3:25 I went to the line and they were rushing us. You could only take pictures with them no meet and greet like it said on TV but honestly I don't blame them in this heat and full body outfits. So here is the picture poor Reka was so hot and flushed.

Reka's New Equipment

2009-09-09T12:19:00.006-05:00

OK now if any of you have insurance you know how long it takes to get special equipment sometimes. Well for 10 month I have been waiting for Reka's cough assist machine. It's a simple but heavy machine that pushes and pulls air out of her lungs to help her cough and move the mucus around, so that I could use her suction machine to get the mucus out. Now the suction machine took no time to get, but after 1 approval letter then 2 denial letters, then the final approval letter last month the cough assist was finally coming to us. I wasn't able to download the video on here so I will add the address so you can see it on youtube, and trust me this is only the beginning, next on our list is a bath chair, vibrating vest, pulse ox machine. Right now the cough assist is a rental, which insurance is paying almost $300 a month, if I remember right they are $3000-$5000 to purchase. I think so far insurance has paid over $10,000 for her equipment and other stuff like feeding bags, extension tubes, etc. etc. Will I actually found a web site of another family it has pictures of most of the equipment they will be needing. http://www.our-sma-angels.com/matthew/equipment.htm
Reka's youtube account is http://www.youtube.com/user/lzhang1076 you can see all the little videos I've done with her and the new two ones her equipment tutorial, and her using the cough assist machine, which is poor quality because I had to hold the camera between my chin and chest.

Happy 3rd Birthday Reka

2009-08-19T19:40:00.011-05:00

Reka just recently turned 3 a week and some days ago. And like i said in myspace and facebook "Thank-you GOD for giving me another years with her." Health wise she is doing great for all who are curious. Another great thing is her cough assist machine was finally approved it only took 10 months we should be getting it soon by UPS. Back to her birthday we both went to Houston to celebrate it with her fathers side of the family. We went to Shin Shin (I think that's the name) restaurant wonderful Chinese food horrible service. She had a mermaid cake, and received cash from them. Now Grandma Linda bought us Dora Live tickets which we saw in Houston but couldn't take any pictures due to their rules. As for other things going on I'm going to be a taxi service for my sister and old friend kids taking them to school picking them up taking some to therapy etc. etc. etc. Busy busy busy! Other than that don't have much else to report so on to the pictures!

Poor thing she is going threw the worst sweating spell so her checks are flushed, and her hair is a little wet.

Figuring out what to order. This pic you can see her sweaty hair.

Sitting up nice and strait.

Taking a picture with her cousin looks so much like her dad.

Had one too many!

Smile pretty for the camera!

Trying to eat soup on her own.

Enough pictures please.

Okay seriously enough with the pictures I'm trying to eat.

Okay I'll stop for one picture but I won't smile.

My Little Mermaid birthday cake!

Family said frosting on the face was for good luck but I have my doubts?

Beauty Queen

2009-05-02T15:36:00.005-05:00

Lately Reka has been wanting to get her nails painted since we went to a salon to get my nails manicured and painted. So I got those little bon-bon nail polish they have at wal-mart, but that was getting too messy. Yesterday I went to wal-mart and got her one of those little makeup kits made for children big mistake she used it up in one day. She is really into defining her brows with glitter let me show you.

Here she is applying.

Final result!

Close up!

Found My Camera

2009-05-01T18:07:00.001-05:00

Hope your ready for some pictures I found my camera.

Ok everybody had to have a picture of there kids with a Popsicle.

Talk about a close up.

Styling and profiling with mommy's sunglasses!!

Lollipop stuck in her hair.

Her new mouth.

New Feeding Schedule

2009-04-29T17:43:00.003-05:00

Reka as you know is on a g-tube, which we started at the beginning of the month. From then to yesterday she had what is called continuous feeds. So she was getting 45ml an hour for 20 hours from 3pm to 10am. Today the nutritionist called and set her on a trial bowless feed which is 90ml in one hour every 3 hours and off from midnight to six in the morning. Then Friday I call her again and tell her how she has been doing then we'll go from there. Just a little update.

The Month that Lasted Forever

2009-04-28T22:22:00.007-05:00

Sorry I don't have any pictures to upload but my sisters oldest son was playing with my camera so it may be lost for good. Which is no problem I was finding an excuse to buy another one. A lot has happened since the middle of March to now. First Reka had her first hospital stay scared me s**tless.(sorry for the language) I honestly thought I was going to have a heart attach. It was pneumonia, and those who know anything about this disease she has knows that's a killer. (literally) She had been coughing for about two days nothing big but by the third day she was coughing all day so I took her to her pediatrician. She had a chest x-ray done low and behold she had fluid in her left lung. So they admitted her, I went home to get some cloths and smoke about 10 cigarettes (outside) and had a friend take me to the hospital. She did pretty good she was out in a week. Now on the 31st of March she had a swallow study done, and again she was automatically admitted. After seeing her drink milk they saw she was aspirating too much so she had a g-tube put in. All honesty I'm grateful for it. Shes getting more nutrition, looks healthier, and has more strength. But once i get my new camera I will show you pictures of her tummy. And one more thing we are moving back to Houston with my husband and his family all in one house LORD GIVE ME STRENGTH!!!!!!

Though I would share a video my niece recorded a couple of month ago sorry the lighting isnt the greatest.

No Coughing YEEAAAAA!!!!

2009-02-14T15:26:00.004-06:00

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

2009-02-05T00:12:00.011-06:00

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

2008-10-07T02:59:00.005-05:00

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

2008-09-06T16:01:00.014-05:00

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

2008-09-05T00:53:00.003-05:00

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

2008-05-28T23:25:00.005-05:00

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

2008-05-16T11:11:00.008-05:00

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

2008-02-19T17:25:00.004-06:00

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

2008-02-11T23:05:00.000-06:00

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

2008-01-29T18:52:00.000-06:00

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

2008-01-11T15:25:00.001-06:00

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

2008-01-08T01:56:00.000-06:00

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

2007-12-21T01:42:00.000-06:00

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

2007-12-17T01:31:00.000-06:00

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

2007-11-20T00:31:00.000-06:00

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

2007-08-12T12:41:00.001-05:00

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

2007-08-11T22:02:00.000-05:00

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

2007-08-10T22:45:00.000-05:00

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

2007-08-08T19:10:00.001-05:00

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

2007-08-06T06:16:00.001-05:00

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

2007-08-04T15:09:00.000-05:00

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

2007-08-02T01:01:00.000-05:00

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.

Chinese New Year

2007-07-28T14:41:00.000-05:00

Actually this was taken almost a month after chinese new year. Her cousin Yan bought her this outfit in New York when she visited a friend who recently got married. Here she is six months old, her hair finally laid down but then mom did something stupid and shaved it all off. My husband and his sisters said they do it to all babys after their first month birthday, but I didn't want to but I got a wild hair up my butt and shaved it one day. Will I actually cut it all off my brother in law shaved it. She looked like a budist monk.

The Visit

2007-07-28T14:34:00.000-05:00

My mom, sister, and her two spawns of Satan came to Houston for a little visit. We went to the zoo, ate, shopping, ate, etc. etc. This is a picture of her with grandma in the hotel room where they spent their one free night. Reka was about five months here.

Christmas time

2007-07-28T14:32:00.000-05:00

This is a picture from Christmas as you can tell from the back ground. She was around four months old in this picture still with spiked up hair.

Pictures

2007-07-28T14:05:00.000-05:00

Will heres what you all have been waiting for pictures. I only have older pictures of her later i will get one of those new fantangle digital cameras. This is her at two months. She was born with a hair style all her own.

Starting

2007-07-27T01:42:00.000-05:00

This is my first time doing a blog I got the idea from my cousins, it gives the family a chance to see how me any my family are doing. Also to see pictures of our little girl since most of my husbands family lives in China. Long story short my husband and I have been married over three years this past April, we have a daughter who will be celebrating her first birthday next month on the tenth. We have lived in Houston, TX for the past three and a half years, he works for a travel agency I am currently taking online classes at Houston Community College towards a certificate in Childhood Development then teaching in a couple of years. Will next time you see this I'll have pictures of our little girl.