What do I do with all this STUFF!?

The first day we were home from the hospital, our home health company delivered our first month's worth of supplies.  To say it was overwhelming would have been the understatement of the year.  Now, I consider myself a fairly organized person, but this was just rediculous.  Not only did I have no idea where all of this would fit, I didn't even know what alot of this stuff was!  I brought all the boxes into Dominic's room, emptied them out, re-packed them, moved stuff around in them, moved the boxes themselves around, then left.  I was defeated, just like that.  Luckily for me, I had a nurse there that day who is known for her organizational skills.  She got me started, helped me sort through everything so I could then take over and put everything in a logical place.

The first thing you need to do is organize the supplies into categories that go together.  All tubing connectors go together.  All trachs and ties go together.  G-button supplies go together.  Once all of your stuff is placed in piles, according to function, it is easy to then place these piles in clear plastic bins and the label them.  I bought a label maker, but you could just as easily use paper and a marker.  I have avoided placing lots of unrelated stuff in a big drawer because that's how things get lost, dirty, and forgotten.  These bins can be stacked, or if you have a shelving system, they can be placed there.  I have mine on a metal shelf I bought at Wal Mart online (much cheaper than Container Store) tucked away in his closet.

Dominic has two monitors he is on while he sleeps as well as a nebulizer and a suction machine that ned to be handy at all times.  All this, as well as the meds, diapers, and nurse supplies (gloves, BP cuff, thermometer) goes on a shelf next to his crib.  Only the supplies we use regularly get put out.  Everything else is hidden in neat little bins in the closet or changing table.

All of his trach related supplies are in the top shelf of his changing table, so we can easily access them when we are caring for his trach.  I had old baskets I now use to store socks, hats and burp cloths in the cabinets of the changing table.

I have a calender on the wall made out of differnt colored scrap paper taped to form a blank calender template.  I placed this in a large picture frame so every month I can use a dry erase marker to write all doctors appointments and therapies on it so the nurses know ahead of time what to expect for the day.  I also have a white board to write notes on and important phone numbers for the nurses.  The nurses also have their own chair and table in the room so they have a neat place to put their notes and personal belongings.

The First Programs you Should get on with a SN child

During our 5 week stay in the NICU the social worker never mentioned programs that would qualify Dominic for secondary Medicaid (:/~).  Luckily, I have a friend that knows all about that who came to my rescue.  There are others out there, I know, who don't have the advantage of knowledgeable friends like that though.  There are so many different programs out there for children with special needs, and ways to get a Medicaid backup even if your income exceeds the low standard (A MUST for a medically complicated child... traditional insurance just doesn't cut it!).  Here are some resources to get you started:

You can find all the information on these programs and SO MANY MORE on the website for the Texas department of Aging and Disability (http://www.dads.state.tx.us/).  Here are a few of the most important though to get you started.

MDCP (Medicaly Dependant Children's Program): 1-877-438-5658, http://www.dads.state.tx.us/services/faqs-fact/mdcp.html.  Provides respite hours (private duty nursing or attendant care for medically fragile children.  Also, if you qualify for this, you automatically get Medicaid.  First call and put your child on the list.  If your child qualifies you can by-pass the 8 year waiting list by waiting a few days and then call *&*&*& and ask to speak with the person who is in charge of "Money Follows the Child" program.  They will assign you a case worker and your case worker will help you bypass the waiting list (if your child is severe enough to qualify) and help set up the 24 hour required nursing home stay.

CLASS Interest List:1-877-438-5658
http://www.dads.state.tx.us/services/faqs-fact/class.html.  Provides home/community services like home modifications, nursing, therapies, respite.  Wait list is 10 years... call NOW!

PCS (Personal Care Services): 1-888-276-0702 option #2.  Provides a care giver to help with things that need two people to accomplish, like bathing an older child with a disability.  Even though your child may be small now, call to get on the waiting list so that when you need help, your name might come up.

HIPP (Health Insurance Premium Program): 1-800-440-0493.  A program that will reimburse the family for private health insurance premiums paid out.  I figure this saves the state money by allowing the person's private insurance to pick up a majority of the costs, kind of an incentive for families to keep their private insurance.

I encourage all you parents out there to, as my friend Ashlee says, "Find your voice!"  We have got to fight for our kids, so don't take no for an answer.  There are so many programs out there, for people of ALL incomes that make life with a special child so much more bearable.

Meet Sweet Noah

(This is from Ashlee, a guest contributor telling us about her sweet boy, Noah.  Thanks Ashlee for sharing him with us!!)

This is Noah! He has a smile that can light up a room. He has big beautiful blue eyes. His favorite activities are wrestling, snacking his sisters, climbing in and on everything. Giving his mama a heart attack at least twice a day. Hiding in cupboards. Drinking chocolate milk. Playing trucks outside, screaming when he doesn't get his way and dancing with his mama. He also enjoys long walks on the beach :) Oh...I almost forgot he also has Trisomy 8.

No-man (as he is sometimes referred) is going to be 2 years old on March 3rd. That is huge for a little boy with a genetic condition that has the label "incompatible with life" attached to it. 


We found out about Noah when he was 2 months old. His case worker called us and told us that we needed to really think whether or not we could parent a child that would most likely worst case be a vegetable. Wow. Heavy. My husband Paul and I looked at each other. If God wanted Noah to be our child we would not say no. If he didnt, well then we wouldn't get chosen for him. No harm in trying right? 4 weeks later his beautiful birthmom handed him to me to be my baby forever. I must say that the moment we said yes to Noah God started healing him. He was doing things he had never done before. When we got him he was 3 months old and 3 months delayed. So basically fresh from the womb. We saw about 25 specialists. Noah had Trisomy 8, extremely high pain tolerance, a sub-mucus cleft palate, hyperactive gag, no suck and I am sure a myriad of other issues I have long since forgotten. See thats the thing about NICU moms and moms of medical babies we get a kind of PTSD. It's the only way to survive and keep going really. He had multiple surgeries his first year. He had a gtube placed and vomited about 10-15 times a day. Not cute lil spit up either. Massive amounts of projectile vomit. My house reeked of it. gag.


There is so much to his story...too much to do it all justice here but I want to highlight an area that I remember all too well.


December 25th 2010- My son had no woken up for 3 days. We made 31 visits to the childrens hospital in 2 months time. Something was wrong with him. No one believe me. That day I had enough. I sent my other 4 kids to stay at grandmas. Paul and I rushed Noah to the ER of Children's Hospital. The doctor who first saw him laying there lethargic and not awake said he was fine. She said it was his first winter and he wasnt use to it. She wanted to send us home. Next 2 young drs come in and say they believe me and would like to get a ct scan. Enter first dr again. "Oh you are that kind of mom that would pump your kid full of radiation for no reason!" she said. I ran out of the room crying. I called Noah's transitional care mom. She told me to keep fighting for Noah. A lot of people were praying for us all over the country. That doctor never came back. Noah had his ct scan was rushed to the 4th floor and had to have immediate surgery. They had missed a 2 month old double ear infection and it was starting to errode his skull bone.


Wait wait wait. Pick your jaws up its just getting good. After the doctors blaming me for this one came in and said," I think you should think about removing his gtube and letting him go." Kill him?Why?! "Because I have never met a Trisomy 8 adult. Well Buddy just wait I will bring him back in 18 years! That doctor never stepped foot into Noah's room again.


 The doctors said he would need 3-4 weeks minimum in the hospital. A PICC line and all kinds of things. He left that hospital in a week without anything other than ear tubes and a gtube. God is so good and so much bigger than doctors.


One thing I would say to a new mom of a SN child is find your voice. Doctors will write your kid off, but you are his mama! You fight as much or as little as you want. If you want breathing treatments or oxygen fight for it. Don't let the doctors talk you out of it saying it is "excessive measures." You should have the right to make medical decisions for your child.


To follow Noah and read all about his journey with Trisomy 8 go to:


http://ourjourneytoadoption.beckfamily143.com/


Feel free to ask me anything as I am an open book. No subject off limits. I can talk about adoption, special needs, Trisomy 8, surgeries, gtubes you get the idea :)


Be blessed

Beacons of Hope, and Help

Nobody plans on having a child with special needs (well, except those very few who have hearts of pure gold that adopt one of these blessings).  For the majority of us, these little gifts from God just fall in our laps.  We are unsuspecting, blind-sided.  In the blink of an eye we are transformed into advocates, protectors (in a way only parents with these blessings can understand), the minority.  We join an elite club of other families who have been trusted by God with one of his most innocent... his saints.  Often though we feel so alone.  As if there we are in a life boat, our emergency light flashing, drifting in the sea with no help in sight.

In the 6 short months I have had my platinum membership in this elite group, I have been faced with many challenges in the practicle everyday life.  How do I organize all of these supplies?  What is MDCP and CCP?  How do I advocate for ____?  Home blend... what's that?  What about school?

Enter "Our special blessing."  I want this blog to be a place where we can share our advice, our experience, introduce our blessings to other families.  Be that beacon of hope to others who feel so alone, drifting on the sea of information.  Please join in this ministry with me!  E-mail me with your practicle tips for this life.  Let me feature your special child so others can see he is not a patient, or a sick kid... he is a blessing.  I look forward to sharing with you all!

In Jesus,
Chasity