Since I'm having so much trouble sending pictures to families e-mails I'm just going to post all the pics here! These were taking when Lisa and I went to San Antonio on Spring Break. We went to the zoo, childrens museum, Rainforest Cafe, Spaghetti Warehouse and the Mall. Had fun only one problem was the hotel that was reserved was cancelled on accident but all in all we had fun!
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!
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!
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.
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!
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!
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.
