Daily Rountines Chapter 1

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

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

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

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

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

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

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

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!!!!

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!!