Wednesday, February 18, 2015

BubuBibi Adjustable Trainers - Now available with add on snaps for older child!

I guess most of us manage to potty train our kids from age 18M to around 4?  Though, some of us that are not as lucky, they are not potty train closer to 5.  Also, there are some special need kids that is a lot older and still require diapers or have accidents occasionally. 

Laynson is born with CCHS and together with CCHS, he had Hirschsprungs. HD is a condition that affects the large intestine (colon) and causes problems with passing stool. Hirschsprung's disease is present when a baby is born (congenital) and results from missing nerve cells in the muscles of part or all of the baby's colon.  We had a surgery done when he was 3 weeks old but we were told that it will be harder to potty train #2 till he is a lot older and even if we did, sometimes, he just can't control it and may have accidents unintentionally.

After being told about that and being around a lot of special need parents, I thought that it would be a good idea to extend the adjustable trainers that I've already got.  So, with several prototype, we were able to come up with the extra snaps on the side so that the adjustable trainers can now fit a lot bigger kids.  It does have gathers to make it more stretchable.  Check them out.  They are available @ our website, set of 3 (6 Pcs total) for $9.99.

Wednesday, February 11, 2015

Happy Valentine's Day! Dress your babies up!

Valentine's Day is just around the corner.  Have you decided on how to dress them up?  We will share some ideas here.  Share them with us too if you have them!

For less than $20, you can dress up your little girl.

Set Consists of:
1) Diaper Cover - $6.55
2) Leggings & Headband set - $12.99

Wait a minute.... what about the BOYS????  Oh my, dress your little cupid up as well.

Set Consists of:
1) BubuBibi Diaper Cover - $6.55
2) Leg Warmers - $6.35
3) Tie or Bow Tie - $5.99

And finally..... go all out to dress her up like a princess on this day of love!

Set Consists of:
1) BubuBibi Kids Tutu (3-8 years old) - $6.99
2) TutuTop - $5.99
3) Headband - $5.99
4 ) Leg Warmers

Happy Valentine's Day to all.  Hope you have a fun day with your little ones :)

Thursday, February 5, 2015

Reviews on "Our Curse" - Full movie here!

Ok, I guess I should have waited for 1 more day, then, I will get to watch "Our Curse" in the comfort of my PJs in my room.  But I guess it doesn't matter... at least I got to watch all 5 of the nominees for the 2015 Oscar - Short Documentary category.  If it were to be me, I would either pick Our Curse, not just because that's what Laynson has, more so it was very real, very touching and I can totally relate since I've been through this and also Veteran's - Press 1.  It is sad to see so many veterans suffering from PTSD thinking of giving up their life, leaving their family.

Anyway, the movie was really good.  I am sure those mom, not only with child with CCHS but any mom that has to spend a long time in the NICU and then having to trach their child.  The part that hurt most was during trach change.  I saw Leo crying and there wasn't any sound that came out.  I still remember, refusing to trach Laynson even though I know that it's the best option for him.  I asked, will I hear him, will he talk?  They all told me yes, you will hear him and he can talk.  That was just partially true.  After the surgery, Laynson was put in coma for 5 days to prevent him from moving much.  5 long and painful days waiting for your baby to wake up and when he woke up, he started crying and it was silent.... wait a minute.... they all told me that I will hear him, I quickly called the nurse, I told her, something didn't go right, something must have happened during the surgery, there is no sound.  They then said, ohh it's normal, you won't hear him unless he wears a cap or passy muir.  WHAT???? Nobody mention that he has to wear something to make sound.... I said to her, please put it on now, I need to hear my baby cry.... she said no mom, we can't do that, he's on the vent 24/7.  Heads down... back to my sit and sob and sob again :(.

There were a lot of challenges in the past, like the part where the O2 dropped so quickly and he didn't show the baby but you can see from the machines that it dropped from 94 to 90 to 88 to 81 to 77 .... all well within seconds.  We deal with that daily in the past and it has been less frequent but tell me, when you were pregnant, you read books like "What to expect, when you're expecting", and then, you have the "What to expect, First Year".... it doesn't tell you what to do when your baby turns blue and literally dead in your arms.  I still remember the first time seeing him being that way, I had nightmare... every night I close my eyes, I would imagine looking at a dead baby.  It is traumatizing.  We were not taught to have to deal with this.... these are things that I just have to pick and go during my busy days.  Then like in the movie, she had to call the equipment company, it is a constant battle.  Then medicaid decides to cut your supplies, cut your nursing hours, and then now, I have to learn to be an attorney, defending my child's rights to things we need to keep him alive.  I wear so many hats till I lost count.  I learn to be a nurse, a pulmonologist deciding on how many breathe he should take on his vent (of course within the limit the doctor gives me), deciding if we should give him treatments, decide to go to the ER right away, then become a scheduler to schedules our frequent doctor's visits, and then, on the other hand, I have 2 other kid that needs me the same, so I have to still be a mom, a sister, a daughter, a wife and then, at work, I have to be a Consultant and lastly for business, I have to be a purchaser to deal with the factory, a shipper to arrange shipment, a customer service person to deal with issues, an accountant to deal with the taxes, social media specialist.... the list goes on.  Trust me, I am not complaining, I am glad that these task were given to me so that I don't have time to sit down and be depressed about what's all that is happening in my life.

I feel bad when I didn't read to my boys, when I haven't ship the item to my customer, when I didn't respond my emails in a few days but trust me, I really tried my best.  I really wish that God would have given me an additional 10 hours in a day together with CCHS.  Wishful thinking :)  Again, I apologize to the customers that have yelled at me, telling me that I am not fit to be in business.... I tried my best.  That's why I told myself that 2015, I would like to turn this around, I want to relocate my time and put my best in BubuBibi.... after all, it's another child of mine.

My friends tell me, you are a strong women, I don't think I can handle it if it were to be me.  I respond to them.... oh no... when it's you, you will know how to handle it.  The survivor mode will turn on and you will be able to handle it as well or if not better.  It's ok, you are not given a choice, STRONG is the only option for you.

Overall, it was truly walking back to memory lane when I watched this.  I have watched it over and over again and I am glad to see what it was in the past and what I've gone through and somethings, I am still going through but the most important thing is, I still have HIM!  I wouldn't trade anything for my little fighter... my hero and also his brothers, who has always been there for him, teaching him to be tough, be the fighter he is.

This is a short 27 mins movie, please take time to watch, hopefully someday, someone would come up with a cure and no kids and parents would have to go through this.

Tuesday, February 3, 2015

NEW!!!! Adult Tutus - Mardi Gras!!!! Come on, let's PARTY!

Ladies & Gentlemen..... Having a Mardi Gras party..... come check out our latest Multicolored Tutu .  It consist of 3 layers...  Be noticed at the party.  Wear them over a leggings, or anything.  Best of all, they are only $14.99 at our website.

Our curse..... Ondine's curse.... it's my curse too....

Some of my customers know that I am a special needs mom but I think a lot of parents out there don't know what my son has.  Basically, my son has CCHS.... Congenital Central Hypo Ventilation Syndrome.  Basically, Laynson will eventually stop breathing when he falls asleep.  It's also call the Ondine's Curse.

I have also heard that they mentioned that some of the SIDS babies that has tested for this genes shows positive but because they are mild, the doctor's didn't catch it and they went home and eventually build up a lot of CO2 causing them to pass away.  A lot of them were said to have SIDS.

Luckily for us, I guess I still consider myself lucky because the doctor caught it 30 mins after birth. We were also very lucky that we live in Dallas, TX and not in smaller cities as some of our friends were told to let go of their baby and was given a year to live at most.

Anyway, there is a conference once in 2 years for CCHS and too bad, we were not there at 2014 CCHS conference, so, we didn't get to watch "Our Curse".  Not that I am not watching my own daily but yes, heard many raving reviews about this short documentary.  And YES, it was nominated for the 2015 Oscar Short Documentary, I hope they will win, it will increase the visibility of CCHS and please, please find a cure someday.

God is great!  Can you believe that he knows that I am in this little small town in Greensboro, NC and he decided to entertain my travel for work by having Geeksboro Coffeehouse Cinema to show it?

I can't wait to watch it and will be bringing lots of tissue paper!!! Yay!!! Finally get to watch it!  I can't believe it has been almost 3 years where this nightmare begin.  These 3 years has been a rollercoaster ride for us, we have almost lost him.  It is scary but like my little fighter, I will fight for everything for him. 
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