A Whole New Do!

This post is long overdue, but I wanted to wait till we had shocked all our family in person.  Elijah has been clamoring for over a year to get a haircut like Sam's and daddy's.  I have nothing against crew cut or the regulation military cut, whatever you'd like to call it, it's just that I love Elijah's hair, thick beautiful blond locks.  Elijah is my biggest (for his age) and I just want to cherish his babyhood as long as I can but he likes to remind me that he is five and five is quite big.  So the second week of April we took the plunge and let daddy cut his hair.

Once Daddy got started I began to have regrets.  I never thought I was attached to Elijah's hair.  He was growing up very quickly in a matter of minutes, instead of slowly over weeks and months.  And daddy cut it shorter than I had anticipated.  I think I almost hyperventilated as I watched all those beautiful locks drop down into the bathtub.  I did realize Elijah does have some awfully cute freckles on his head.  These are new since his bald stage from birth -2 years. 

Elijah loved the new hairstyle immediately.  After all he had lobbied for it for nearly a year.

Although a bit slower, I am coming to love it, how could I deny my little boy such glee, even if it makes him look so much older to me.  I must remember that five is quite big.

I received this in an email on Mother's Day from a special mom friend Judy.  Judy and I would probably never have met if it weren't for our special children and now although we see each other only monthly and communicate sparingly online, I count her as a cherished friend. 

One thing this journey with a special needs child has taught me is that joy shared gets multiplied and burdens shared are divided. 

So to all my mom friends I cherish you and the support you give me, and for those journeying in Holland with me I cherish you all the more.


TO YOU, MY SISTERS

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Dear Congress...

I understand your having trouble agreeing. 

That all of you want it your way and only your way.

And you think your doing what is best for your constituents and the American People.

I think you're all full of it.   Have you thought for one minute what a government shutdown means to the thousands of Federal employees and the military?  It means no pay.  And here are a few of the details.  The military will not be paid, not a cent but will continue to serve.  They will work for an undetermined period of time without any compensation.  Since they are working they have no opportunity to try to earn any extra income to do things like buy groceries or pay for a prescription.  And worse, the Federal Employees are won't work and may or may not receive payment for that time, no one seems to know AND they still need their supervisor's permission to go and seek any other work.  I heard senator Ron Paul saying that we will just need to go to our landlords and ask them to wait to be paid.  That is what everyone does.  I have a benevolent landlord and that might work with her, it might even work with our utilities.  I wonder how that would go over at the grocery store?  Do you think I can waltz in there, fill my cart with groceries and ask them to let me pay next week?  Somehow I doubt it.  How about the gas station?  After all my husband is going to have to continue to commute to work without pay.  What do you think the attendant will tell me when I ask to pay sometime in the future when Congress gets its act together?  How about the toll taker on the bridge?  Or the bus driver when the gas runs out?

I am thankful that my family has built up some savings in the last year and we can make ends meet for a short time without pay.  However having been a military wife for 15 years I know the financial situation in many military households, the money runs out before the month.  By the end of the pay period the checking account has only change, the car is running on fumes, and dinner gets quite interesting as you try to figure our what you can make with the remnants of your cupboard.  Many military families are stretched so thin that just a child getting sick and needing to buy a bottle of Motrin can be a financial stress.  Imagine what a late paycheck would do?

I am glad dear senators and congressmen that you have taken care of yourselves, you won't have to think about these things.  Your mortgage will be paid, you'll have food on the table and gas in your car.  Some of you will give your pay to charity which I admire, but tell me how does that help the military and federal employees make ends meet without a paycheck? 

I sign off with one last suggestion for you.  Since you are acting like young children in your bickering and refusal to even try and relate to what the other side is saying I would suggest you do what I make my children do.  Sit down with your adversaries on the other side of the aisle, hold hands, look into each others eyes and say five nice things about each other and MEAN IT.  I like your clothes doesn't count.  Then sit down and have a discussion and compromise with real give in take, instead of stomping and pouting.  If my 3 year old can do it, so can you.

Sincerely,

Heidi French
Coast Guard Spouse
American Voter
Mom to 5

Happy 2nd Birthday Mary Evelyn!

Two years ago, in the wee hours of the morning, James and I made the crazy drive into town while I was in hard labor, wondering if we'd make to the hospital on time.  Little did we know the surprise in store for us.  We were expecting our fifth child and the last one had come in just about four hours so we knew the rush was on.  We were met in the emergency room parking lot by my sisters and eager staff who refused to let me walk up to labor and delivery, although I insisted I could.  We were whisked into a labor and delivery room and one nurse took my vitals while the other nurse checked my cervix and exclaimed she's at 10 centimeters.  A few minutes later she informed us that the baby wasn't coming head first.  The presenting part was an elbow.  They roused the on-call doctor (as it was about 3:30 a.m.) who came in an discovered that the baby was indeed sideways trying to come out elbow and shoulder first.  Without getting too much into anatomy let me just say that doesn't work.  So I went from we'll have this baby any minute to we need to do a c-section and quickly because if my water broke (which amazingly it hadn't) the baby's umbilical cord could be compressed underneath it.  The hospital had to call in a very grumpy anesthesiologist and I was wheeled down to the OR and surgery commenced at 4 a.m.  Because of the baby's position they had to make a much longer incision than usual.  Mary Evelyn French was born at 4:39 a.m.  She weighed 6 pounds 15 ounces and was 19 1/4 inches long and other than needing a little extra stimulation to get breathing was fine.  I wish I could say the same for myself.  Mary's birth took me much longer than any of the others to recover from.

Mary was born at a difficult time in our lives.  Naomi had just been diagnosed with celiac and was still struggling greatly to grow.  Two days after Mary and I were discharged we were at a speech and hearing evaluation with Naomi.  By the time Mary was two weeks old she had been to two medical appointments for herself and many more for Naomi.   Being the baby has it's advantages and Mary has never been at a loss for an audience.  From the moment she learned her grins and laughs delighted the other kids so much she has been our family entertainer and if being nice doesn't get everyone's attention, she'll get it being naughty. 

Mary is the most curious spunky little girl I have ever known.  We've thought about starting a service to ensure your home is childproofed.  It is quite a simple business plan.  We will drop Mary off at the clients home for half an hour, if there is anything remotely possible to get into Mary will be in it.  She's stacked stools on chairs, opened a childproof lock or two and has sonar abilities that can tell if a bathroom door has been left ajar anywhere in the house.  And given a minute or two she can make toothpaste into hair gel, flood the kitchen floor, eat half a box of hidden candy and draw three masterpieces on the wall and the newest appliance. 

Despite her constant "trouble,"  Mary is truly a delight to have around.  She freely gives kisses intermixed with headbutts and has a delight in the world around her that can only be seen through the eyes of a small child. 

Happy Birthday Mary Evelyn.  Mommy loves you!

Pinewood Derby

Last night was the AWANA pinewood derby.  My kids love this event.  I love this event.  It's a lot of fun, but it is also a great reminder of one of life's lessons better learned early.  Not everybody wins.  Actually most people lose.  In a society that gives an award for everything, it is kind of refreshing to go to an event where most of the kids leave with only the satisfaction of having tried and putting forth their best effort. 

Learning this lesson isn't always easy.  All the kids had a great time designing and painting their cars.  They went with high hopes of how their cars would do in the races, but Naomi was the only one who left with a trophy.  She got third place for design in the Cubbies division. 

Elijah took losing the hardest.  He cried.  Big, fat crocodile tears.  Disappointment is hard to take but it is part of life and as much as I hate to see him cry, I want him to learn that we often lose and when we do it with grace and then learn from it sometimes were better off than if we had won.  Overall the kids had a good time and the oldest three are already talking about how to improve their designs for next year.

I swear Naomi wasn't clobbering Sam with her trophy.



To My Friends With Special Children...

We always gravitate to those like us.  We join knitting circles, book clubs, hiking groups and community service organizations.  We watch the game with other sports fans and we go to the beach with other beach bums.  Whatever your fancy there is a group for you.  When we become parents, at least the females among us, we often join mom's groups. 

But there is one group that none of us aspire to join and that is support groups for parents of medically fragile or challenging kids.  We join these groups for the same reasons we join the others.  We want to be with someone like us.  We want someone we can relate to.  We want to vent to people who REALLY get it.  We want someone to lift us up and celebrate each milestone no matter how obscure or non-eventful it might seem to others.  We pass on doctor's names, funny little tips (how else would I have found out that the syringes that are made for feeding baby squirrels are highly superior to the medical grade ones), the latest research and tried and true wisdom.  We also share each others sorrows.  For as much as there is great joy, there is great pain.  As I become more and more involved with other mothers who have medically challenging children, I know more and more who are suffering, from depression, from despair and from grief.  

This is something I did not realize was part of the package of getting the support, encouragement and understanding that I so desired.  The grief of one mom, is the grief of us all.  Even if our child is not suffering now, we realize how fragile they really are.  Nothing can be taken for granted.  Every day children are hurting, they are in pain that doctor's cannot touch.  Every day their parents are watching, hoping, praying, researching and feeling utterly helpless because their child suffers and they cannot fix it.  Every day a parent gets bad news, really bad news.  The kind you hear about and think I don't know if I could handle that.  Parents get told their child is dying, there is no cure, there's nothing else we can do and then they have to go in and decide if and when and how to tell their child.  They grieve their child's future while trying to make the most of every day.  They appear strong, almost saint-like but inside they are all churned up, so many feelings, so much pain.  I am here to say they are not alone.  I grieve for their children and for them.  So do many others.  More often than we would like to admit we are unable fix things and the only response is to grieve and pray.  Grief is not giving up hope for a future, that is never done.  Grief is realizing that something precious has been lost and mourning that.

To all my friends who suffer with your children, you are not alone.  I grieve with you.

Turkey Disaster Diverted!

Naomi woke up this morning in a pleasant mood.  That right there is reason for celebration.  Naomi usually wakes up grouchy and there is a host of things that can send her mood into a tailspin in the morning. The trouble is they change every day, sometimes it's eye contact, sometimes I suggest we get dressed to soon, sometimes one of us talks to her and she wasn't ready so a happy girl first thing was exciting.  Never mind that I've got too big kids home from school today with a virus, I've got a happy Naomi in the morning so I'm going to celebrate.

Well not only was she happy but she wanted to EAT right away.  I usually cannot interest her in food until 10 a.m.  She wanted turkey so Bethany feeling chipper after her Tylenol kicked in ran to the fridge and pulled out our gluten free, nitrate free turkey lunch meat.  Naomi started to wail.   I thought it was because Bethany got the turkey and she wanted me to but, no, she wanted different turkey.  I pulled out some leftover chicken from the fridge and told her it was turkey but she started to cry harder.  "NO, I want different turkey!"  Bethany and I tried for half an hour to tell her there was no other turkey and this is what we had and she proceeded to cry harder and harder insisting she want different turkey.  I finally left her alone to diaper Mary and brush my teeth and hair and came back to a still crying Naomi.  I began to think how am I going to get any food into her mouth or a tube with her laying on the floor throwing a fit.  In case your wondering tube feeding does take some cooperation or we will have a huge mess and potentially a removed tube.  Finally at my whits end, she'd been crying nearly an hour, I asked her if she knew where the "different turkey" was.  She got up took my hand and led me into the dining room where the grocery bags of non-perishable food from our last grocery shopping trip sat on the table and pointed to a bag.  I peeked in and there on the top was a bag of beef jerky.  I pulled it out to a squeal from Naomi. "My turkey!"  Turkey disaster diverted and despite two sick kiddos, I think it is going to be a very good day.

Addendum:  As I was getting ready to upload a picture of Naomi with her "turkey" my computer crashed so I am publishing this from my parent's house.  Thanks mom and dad!  So today turned out to be an interesting day and hopefully the computer guy will be able to fix our computer without draining our bank account.

Jelly Belly Basket Weaving - Fun time with the girls

Yesterday was a momentous occasion.  Bethany wove her first Longaberger Basket.  I wove my second and had a great time with my mom, sister, niece, mother-in-law, sister-in-law, Bethany and Naomi (all though she just watched).  Longaberger has become somewhat of a family tradition. 

My mom loves Longaberger and gave me my first basket a hand-woven doll cradle as a young girl.  I now have a house that is adorned with many baskets and even sold them for awhile.  I have wanted to go to the Longaberger homestead for years, but the trip has not happened.  But we did get the next best thing.  Longaberger came to us.  We went to the Jelly Belly Factory in Fairfield, California and with the assistance of expert basket weavers we got to weave our very own one of a kind basket. 



Bethany and I with Ray our Professional Basket Weaver.



We also got to sample Jelly Bellies and fudge.  What could be better?  Naomi loves all the different yellow Jelly Bellies.  Bethany loves to try all of the Jelly Belly recipes to make different appetizing flavors like root beer float (2 root beers and 1 cream soda) and Blueberry Muffin (2 blueberry and 1 Buttered Popcorn).  We discovered it doesn't matter what language you speak Jelly Belly has the recipes written out for you.  There was German, Greek, Arabic and Japanese to name a few.

The whole family was going to go but alas poor Sam woke up in the morning with a 102 degree fever so daddy and Sam stayed home.  We left Mary too.  Please don't tell her she missed anything special.  And Elijah chose to spend the day with Papa.  We opted not to go on the tour this time.  We've been at least half a dozen times already.  The tour isn't that spectacular that multiple trips are required but the abundant free samples at the end, they even give them to the babies, now that is special.  The kids really like the paper hats they give you to wear as well.

What we thought was going to be a family outing turned into a fun multi-generational girls day out where we got sweet treats and came home with beautiful baskets woven by us!  Today was a success for sure.


Me, my niece, Bethany, my sister and my mom in front of the Longaberger Basket.



Cousins.



I've Lost Touch With Reality

It looks like Naomi might be in a good position to try to wean from her feeding tube.  She no longer vomits.  Words cannot express how happy that makes me.  Until you have cleaned vomit from clothing, bedding, furniture, carpet, hardwood, pavement and people daily for a prolonged period of time you cannot understand how blessed mommies of persistent vomiters feel when they get a few emesis free days.  She is growing, very slowly, but growing.  Her celiac is under control and we are confident in the gluten free diet.  She no longer has huge speech delays and is very interested in other children and what they are doing and we finally have a date for her tonsils to come out the end of April so unless the bronchoscopy shows aspiration damage we are planning to start being more aggressive with her oral eating in May.

Here's my big problem though.  I have no idea what "normal" is for a preschooler's eating habits.  Although Naomi is fourth in our line-up of children it has been several years since Sam and Beth were little and Elijah isn't a good model to hold Naomi up against.  Elijah loves to eat.  He recently asked me how much more pounds he would need to be as big as daddy.  I told him he'd need at least 150 more.  He smiled and replied "Oh good that means I have to eat lots and lots."  I sincerely doubt Naomi will ever eat as much as Elijah.  So far today Naomi ate one container stage 2 baby food pear-pineapple with colored sugar sprinkles mixed in.  I know it is baby food and she is three.  It is what she wants, it has some nutritional value so I give it to her.  Honestly if she asked for a bowl of sugar, I'd give it to her, I would just try to hide it from her siblings.  She also ate about five pistachios.  While I was doing laundry Naomi and Mary dumped a Costco container of Parmesan cheese on the kitchen floor.  I came into the kitchen to find Mary and Naomi in all their cheesy splendor licking the cheese off their fingers and the floor.  I was not happy about the mess, but secretly I was happy Naomi was eating.  Licking it off the floor is a bit unconventional and will probably be a problem when she starts school, I don't see the school working with me on that as part of her 504 plan, but she was eating and a calorie dense food to boot.  For lunch she requested "gluten-free Nomi oatmeal with chocolate chips" so as I'm sure you guessed that's what she got.  She expertly mined all the chocolate chips out so I gave her a second serving of chocolate chips, they were organic, but she was done.  She's had a few sips of water today too, she isn't interested in juice or milk at all today.  Later this afternoon she may eat a cracker or two or dip some carrots in ranch dressing but it will only amount to a few bites and dinner is feast or famine with her.  If she is in a good mood she will often eat 1-2 ounces of meat and maybe a bite of something else, if she is in a bad mood, she will push the food around her plate, dump it on the floor or completely refuse to come to the table. 

Somehow I don't think this is normal, but maybe some of it is.  What does a normal three year old eat?  What should I be shooting for?  This is where I need your help.  I'd love to hear what your child does or did eat at three.  Please leave a comment, send me an email or Facebook me.  When I can recall what normal is I might have an idea of how far it is we have to go.  Right now it looks like there is a huge ravine between us and being tube free and there is a rickety bridge that crosses it but unfortunately it is missing most of the slats that would support our feet.  It's pretty scary trying to cross on just the ropes, we get tangled up, swing wildly out of control and spend so much time in fear of falling off.  If only I could get a few of those slats replaced....

My not so typical three year old.

Feeding Tube Awareness Week Comes to an End

Today is the last day of our first Feeding Tube Awareness Week and I am sad to see it come to a close.  This week has done amazing things for me and for the tube-fed community.  It has given me a platform and a reason to speak out about Naomi's feeding tube and thus opened up many conversations with friends and acquaintances about feeding tubes.  It has allowed me to share what our life is really like and reflect on how thankful I am for a device that I desperately tried not to have as a part of our lives.  It has allowed me to network with so many tubie families that I never would have known and I have been able to give and receive encouragement and advice with them.  It has also given me the courage to be more open about Naomi's tube.  We might even give her a blenderized feeding at the park soon instead of timing the park around our feedings.  We've done formula in her pump out and about but never real food with the syringes.  Most kids don't have to wait until they get home to have a snack or a meal so why should Naomi.  I have realized the only thing stopping her is ME.  It will be more work but maybe it will bring a little more awareness to the fact that some of us just need to eat differently.  We've also had the chance to cyber-meet several adults with feeding tubes and there stories are really encouraging, I especially like Joey's.

Today we are supposed to talk about something positive that has come from the feeding tube and I think this week definitely has been, but the other big plus for us is that Naomi has energy and our life isn't about food.  So instead of telling you, I'll show you.  We can go play in the fun and the sun at the park (nope I didn't feed her this time, but if the weather allows I bet it will happen next week).  I truly believe that if Naomi didn't have the tube both she and I would have been too tired to go to the park.  Naomi from malnutrition and myself from spending hours every day coaxing her to eat and hours every night worrying.  Yesterday afternoon Elijah, Naomi, Mary and I ran off all of their energy while waiting for Sam and Beth to finish school.  Having Naomi and everything that comes with her has made me so thankful for the little things!

Questions - A Better Response to Those Who Asked and Those Who Wanted to.

Yesterday on Day 5 of Feeding Tube Awareness Week the topic was reaching out to friends and family.  Letting them ask you the questions they have about feeding tubes.  Well I posted of Facebook and some did ask and the questions were great.  They mainly focused on how does the tube stay in, what happens if it comes out and how long will she have it.  I hope to better answer those questions today.

The type of tube that Noami has right now is a MIC-KEY button, made by Kimberly Clark.  This is what it looks like in her without her button buddy. 

 There are two pictures: the one of the left just to show you how it looks and the one on the right to emphasize that there are two ports. One that faces out to feed into and one that faces to the side that is attached to a balloon in Naomi's stomach.  The balloon is inflated with water and that is what holds her button in place.  The bottom right picture I found online and this is what her button looks like. 

Her button can actually be changed out at home and should be changed every three months.  We have yet to change it at home as the changes have coincided with appointments with her gastroenterologist but we are feeling braver by the moment and are going to try the next button change at home.  We'll do it in the morning on a weekday though, that way if anything goes wrong we can whisk her off to the GI doctor and save ourselves an ER visit.  The video I've included is another tubie mom and her daughter Harmony.  Laura is quite confident changing Harmony's button and I hope to be the same someday.

Now can Naomi's button come out? Yep.  Has it? Nope.  And we are very thankful for that.  If it were to come out and we had a spare button we'd pop the spare in and be doing good.  But we can't always have a spare as the buttons are expensive and insurance companies don't like to pay any more than they have to so, if we don't have a spare button or the button came out at night and we were unaware until later we have a supply of catheters in a range of widths that we can put into Naomi's stoma (the hole in her abdomen) to keep the placement while we head to the Children's Hospital as they are the only ones likely to have a button in stock.  The hole in Naomi's stomach could close in as little as an hour and definitely would within four hours so if the tube comes out timing is everything as we certainly wouldn't want surgery again.

A lot of you have asked questions about feeding therapy too, what do we do there, does it accomplish anything?  I plan to answer those soon along with pictures of a session but I need to either have Naomi do a session by herself or get the permission of Naomi's therapymate before taking and posting pictures.

Today's topic for Feeding Tube Awareness week is to tell about a negative and how it could have been positive but frankly I don't have much negative to report.  Thankfully our friends and family have been supportive and willing to work with Naomi and any limitations she may have with her celiac and her feeding tube and we are very grateful for that.

Tell Me How to Get to Sesame Street

We all watched Sesame Street as kids or at least we knew someone who did.  For years Sesame Street has shown thousands of different children and adults representing our diverse culture.  They have had children and adults of every race, including mixed races.  They have had people with Down's Syndrome, those who are blind, use hearing aides and wheelchairs.  They have never had a child who is tube fed.  There are thousands of tube fed children in the United States alone right now and they would love to see someone like them on Sesame Street.  Would you join me in our cause on Facebook Help Get a Tube Fed Child on Sesame Street.  By joining this cause you are showing Sesame Street that thousands of people, not just a few, care about diversity on Sesame Street.  Also would you considering writing Sesame Street and letting them know.  Select food as your subject and your letter needs to be 1000 characters or less.  Seeing tube fed children in the media would make them more "normal" and accepted in their lives. 

Blenderized Diet - How Naomi Gets Fed...Feeding Tube Awareness Week - Day 3

Addressing Misconceptions:  What do you want other people to know about feeding tubes?  Naomi can have real food.  It takes a little more work but Naomi now mostly gets blended up real food in her tube and today we're going to show you how.

 

So this is what Naomi ate at first.  On the left is a 1.5 formula (1.5 calories per milliliter).  The  four boxes a day equaled 1420 calories, this blew Naomi up from below the growth curve to the 50th percentile so we cut back to a 1.0 formula on the right  this was 948 calories.  But on both formulas Naomi had lots of tummy troubles.  We also really wanted to give Naomi real food.  When I read the ingredients of both formulas corn syrup solids was right near the top of the list.  We'd also been told by our feeding therapist and members of our local feeding tube support group that children were more willing to eat on a blenderized diet, so we scoured the Internet for the little information there is, found a great online group of people who were already doing a blenderized diet and jumped in.  So this is how we prepare Naomi's food and give it to her.

First we get everything ready.  This is everything that went into today's blend, except I forgot to include the almond butter and black beans in the picture.

 Then we throw everything in the Vitamix, our high speed blender.

And blend, it usually takes about 3-5 minutes of slowly walking up the speeds and then 2 minutes on high to make sure everything is well blended and broken down so there are no large particles to block her tube.

Then we pour the blend into 8 ounce glass baby bottles.  This blend filled 3 bottles.  Do you have to use these bottles? No, but we like them.  I prefer glass to plastic and these are a good size for storing.  We either store in the fridge or freezer depending on how soon we're going to use it.

Now it's time for a feeding.

First....

We put the baby to bed, just for the mid afternoon feeding though.

Then we get everything ready.  We put a towel on the couch for Naomi to sit on, we grab baby wipes, her blend which I warmed up to room temperature in sink of hot water, a bottle of water, a 10cc syringe, a bottle of whole milk, an extension set and a 60cc syringe with plunger.  The little table was $20 at IKEA and well worth it.

Then we attach the extension to Naomi's button and plug the 60cc syringe into the extension.

We pour the blend into the syringe.

Use the plunger to push the blend into Naomi's tummy.  Some people gravity feed, let the blend run into the tummy.  We make Naomi's blends too thick to do this.  When we first started we plunged really slow but now we do three syringes full in about 5-7 minutes.

Then we pour about an ounce of milk into the blend bottle and shake it up and pour the last bit through Naomi's tube.

Sometimes we make a mess, this is why the towel and baby wipes are the most important part.

Last we flush the tube with water.

All done!

Sam, my photography assistant.

Elijah, who offered much instruction during our demonstration.

And Bethany, chief editor.  She told us which pictures NOT to include.

Feeding Tube Awareness Week - Day 2

Today's topic for feeding tube awareness week is pictures before and after. 





Naomi was quite thin before her tubes, you could count her ribs. 





Now you've got to tickle her to find those ribs.

If you want to see more, I created an album on Facebook that shows several before and after tube pictures.  Perhaps one day we will be able to show an after picture of Naomi tube-free.  We are hopeful for that day but realize there is a lot of work, mostly on Naomi's part to get there.

Today we answer the question... What is the most positive benefit your child has received because of tube feeding?  Reduced stress and positive eating experiences.  Before Naomi's feeding tube our lives revolved around her eating.  We worked overtime to get as many high calorie foods into her as possible.  We took away water (at doctor's suggestions) and only let her drink super high calorie formula.  We put butter, oil, honey and sugar on everything and Naomi hated it.  If she asked for a fruit or vegetable it came drowned in a high calorie dip.  We were constantly coaxing her for one bite more.  Now with the tube, we still want her to eat, but the pressure is off.  She can learn and develop at her own rate and we have bought extra time to figure out why.  Meal times can be fun again and I don't have to worry about making it super high calorie for her and somewhat nutritious for the rest of the family.  The other major positive is energy.  I never realized Naomi was low-energy until after she got her tube and suddenly had boundless energy.  She loves to play and now has the energy to do it.