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!