A Family Project: Sleep Deprived EEG

I hope you can see and enjoy the humor in how even the medically mundane can become an adventure in our family.  

When planning for Matt to have a sleep deprived medical test, it is a family project.  For the test Matt would need to sleep less than 4 hours.  I knew he would fall asleep in the car on the way to the test so I had to allow for an hour of sleep in transport. Therefore, we made a plan to keep him awake until at least 4:30am.

It went something like this...No bath because we will likely need a bath during the night to stay awake.  We rented 3 movies and 2 "active" Wii games.  I had snacks and activities ready.

8:30-9pm             Twins are in charge because they thought they needed a shift.  (The usual bedtime is 8:30pm)

9pm-10pm            David was in charge of keeping Matt awake. (AKA Project Movies)

10pm - Midnight   Corrine was in charge and rolled out snacks, hot chocolate and a bit of noise.  (They woke me up a couple times.)

Midnight-2am       Grace was in charge and I have no idea what she did, but he was awake when I started my shift.

2am-8am              Mom (me) on duty....


Here are my shift's highlights:

2:18am   Matt falls asleep while using the potty.  (I catch him before he falls.)

2:20am   We do homework.  He wants Corrine to get up and sit with him again.  I say no.

2:40am   Movie and snack in kitchen so the chair would be uncomfortable and keep him awake.

3:15am   I literally "catch" Matt as he "falls" asleep at the kitchen table.

3:20am   Matt goes through all the kitchen cabinets.  I don't know what he is looking for, but he is awake so I don't care!  He can look all he wants!

3:30am   I break out the glow sticks so Matt wants to turn off all the lights...BAD idea!!!

3:45am   Another snack....back to the Wii games

4:11am   Matt brings me his piggy bank and wants to go the Wal-Mart.  It is starting to storm so I say no (and I honestly cannot imagine a fate worse than taking an extremely tired child to Wal-Mart at 4am.  I am pretty sure this is the "stuff" that causes concerned citizens to call Child Protective Services.  Otherwise, it might not be a bad idea since I do need a few grocery items.)

4:30am   Well timed LOUD thunderstorm.  Thank you Lord!  (I have a new prospective on why we have loud storms at night.  It is just the Lord helping out a mom!)...still playing Wii.

4:45am   Matt drifts off to sleep.  Time for a walk and ice cream.

5:15am   Daddy gets up for work.  Twins and Nate wake up.  Chaos ensues as the boys start arguing over the Wii, movies, getting clean and dressed.

7:00am   Everyone on the bus.  Matt and I head to the clinic.  He falls asleep.

8:00am  Arrive at clinic and he is awake and ready to check this all out.  He doesn't like the cold gel.   Luckily, once he is "wired", it only takes about 8 minutes for him to settle down and sleep.

10:00am Matt falls asleep on the way home and gets carried in still asleep.  Mom is drinking coffee ready to start paperwork and housework while Matt sleeps in my bed.  Never mind, Grace just took my coffee.....

Another family project is completed except getting Matt the Happy Meal that he has been promised.

Praying for Workman #11

Today was supposed to be our first ultrasound to establish a due date, but the testing did not reveal the expected.  The baby is at least 3 weeks younger than expected...only 6 weeks.  The doctor is concerned that Workman #11 is not going to make it.  I go for another ultrasound next Friday to look for growth and we are praying for a strong heart beat. 

Even though Workman #11...oh let me digress....please don't be offended by this baby's title, we are notoriously slow on naming children...It is a wonder that Corrine is not still "Workman #2"...which would be awkward since we adopted Hannah and Corrine is #3 in birth order.  It is just so much easier when adopted kids come with names!

So as I was saying, even though Workman #11 is a BIG surprise, this baby is still a blessing created by God and already treasured by our family.  Corrine has already knitted several hats.  Grandma and Aunt Doris have secured baby furniture because that is what Fleming women do.  They are always prepared in advance!  Matt, Mark & Luke think every box that arrives at our house might have the baby in it.  (Yes, our delivery guys are probably VERY confused by now.)  Vanessa is ready to move a baby girl into her room now...we have been talking about how the baby stays in Mom & Dad's room, but Vanessa has other hopes and plans.

Needless to say, I would appreciate your prayers for our family and Workman #11.  (So far this newest Workman is one of my favorites because I have not had terrible morning sickness like with Grace and Corrine...only a bad cold.)

Managing Stress and Wheelchair Thieves

The missing chair.

As most of you know, we are planning to move later this Summer and the stress of packing, fixing up, cleaning up and finding potetial buyers is a bit crazy right now.  Add to this that we will soon go on vacation and my house has a true circus of boxes!  Ring 1 boxes are packed to move.  Ring 2 boxes are sorted to give away or sell and include things like clothing that our youngests have outgrown, homeschool books, and regretable home decor that I purchased while under the influence of the 1980's. Ring 3 boxes are stuff for vacation like water wings, swim suits, board games, crock pots, extra bibs, diapers.wips, Oxygen tanks, feeding pumps...the uniquely, usual stuff that our family takes on vacation.  Then there is sometimes a Ring 4 accumulates, which is often placed beside the garage. It is the ring where we put stuff that we are moving to make room to make my Ring 1, 2, or 3 stacks bigger! 

So it was out of Ring 4 that someone came in our yard and took Jon's pediatric stroller that we use all the time so we don't have to always take the lift-equipped, deisel-gussling bus.  Yes, I was actually stupid enought to sit this valuable piece of our lives in our yard.  It was folded up like an umbrella stroller folds and I am thinking that the theives thought that they were stealing a jogging stroller.  I have been praying and posting on facebook in hopes that the person would realize what they have and bring it back!  Please be praying with us.  It was purchased for Vanessa and we passed it on to Jon when Vanessa outgrew it.  It seems that insurance will cover most of the replacement costs, especially since Jon needs it.  We have actually just been saving the insurance company money and saving us the co-pay money through "hand-me-downs".  However, we have been warned that it will take a while to get it approved and ordered so please pray that we get the replacement before Daddy's summer vacation is over.  There is never a "good time" to have something like this happen, but having Daddy home to help lift/carry Jon is going to make this problem much more manageable.

This situation has angered so many people, but I'm not angry.  I'm disappointed by the realization that people do steal things, even our stuff. I'm frustrated by the inconvenience to us and limits that this puts on Jon's summer activities such as the water park where power wheelchairs are really not a good idea.  But what I really want and am praying for is for it to just be returned....afterall, we really are very blessed, Jon wasn't in the chair when it was taken!

Our Fabulous Pharmacist

Nate and I had the pleasure of telling people how great our local pharmacy has been to us.  The TV story did not cover the fact that Nate's medication must be made and requires special skills.  Few pharmacies will make it and the hospital even thought that we would need to have it shipped from the hospital on dry ice.  However, we were able to get it here in town and from a very dependable source.  Tim Mitchell and his employees do a great job for all our family and we recommend them highly.


Click on the picture or link above to go to the news story.

We have several amazing local business here in Neosho and it was nice to see one of them recognized.

40: Day 57 Weigh In

Last week our TOPS meeting was cancelled due to weather so today's weigh in is almost 2 months since I started this healthy life style change.  In two weeks I lost 4 1/4 pounds.  This brings my total lost to 32 pounds.  While I'm pleased with the weight loss, it is discouraging to think how much more weight that I need to lose. 

Corrine and Grace have now joined me at TOPS.  Corrine has now lost 15 pounds and Grace has lost 11 pounds. So as a group, we have lost an impressive 58 pounds!

40 & Cranky? Got Iron?

Well, last weekend was terrible, and it bothered me more than it typically would.  I've admittedly been unusually negative and cranky for about a week so when I went to the weight loss nurse yesterday Corrine was quick to point out to her that I was cranky.  (Sarcasm ahead) I love it when my kids help me out like this!  So after a complete checkup, we determined that I could use some more Iron.  This is the first that I have heard that low Iron can cause crankiness and come to find out, low Iron causes fussiness in children.  How did I not know this!  We struggle with the twins and Matt's Iron levels, but no one told me that this could contribute to fussiness.  Needless to say, I see red meat, deviled eggs, and greens in our dietary future!

I started today with a multivitamin with Iron.  Then I went to TOPS and found out that I had lost 3.75 pounds this week.  Needless to say that was an encouraging start to my day so I'm not sure if the Iron or the weight loss improved my mood.  BUT I think I know lots more people who may need some Iron!

40: DAY 1

Hello Day #1 of being 40! (Now if only I was actually that excited about it!) 


Feeling a bit beat up by 40 this evening.

A busy day of work and appointments!  So it was fairly typical.  Hubby had taken me out on Friday night so Grace and I went to supper together at Del Rio this evening so I could have Fajitas that are diet friendly.  Then after my meeting the kids had cake waiting for me.  (Matt unfortunately had fallen asleep early on the floor so we saved him a piece of cake for tomorrow.)

Community Responsibility: 

This evening was an advisory council meeting.  Its a group that I was first appointed to before the first meeting on October 21, 2009.  As I sat in another meeting without a quorum, and we reviewed the same items needing done as in 2009, I just felt defeated!  This group is responsible to improving lives for real people with real issues.  The fact that nothing has been accomplished by the group in 3 years has it on my list of things that I may not continue to carry into my new decade.

Health/Fitness: 

So I went to my first TOPS meeting this morning to kick off the day.  TOPS stands for Taking Off Pounds Sensibly.  Oh my was it strange!  They have a pledge that assumes I'm an emotional eater.  I'm not...I just LOVE great tasting foods!  I can cook well and I appreciate great cooks and great food!  They have weight loss songs...yes, SONGS to well known tunes!  I thought I'd die as many got out their songbooks!  The members were old! Not that I'm sensitive to age today...I felt older just being there...NOT a good thing to feel OLDER on my birthday.  However, on the positive and less weird side.  They were welcoming and friendly.  The group seems to be very tight knit.  There are people there losing weight!  So I'm doing my 40 days as planned!  I'm going to weekly meetings; I'll pledge; I'll sing & I'll probably feel old in that group too, BUT maybe I'll lose weight too.

Then this afternoon I had a doctor appointment to just seal the deal that I'm old.  However, we also figured frightenly embarrassing things like BMI and that I'll be as old as those other ladies at my meeting this morning by the time I get to my goals (see wisdom).  Not a very uplifting experience.  Even made better by a follow-up scheduled for Thursday.

Spirituality: 

Well, on my first day of reading the Bible through and Genesis has so far proven to be too big of a chunck for today, especially with so much work to do at the office.  (But I'm not complaining, the extra work is great.)  So I'll keep reading and see if I can't get caught up in a few days.

Wisdom:

I have set some goals for the next 40 days like reading the Bible through, getting boxes of diapers donated to Children of the Promise, and being more involved in my community.  However, for weight loss goals, I'm not sitting a number goal.  I haven't lived by the number on the scale in years and I don't plan to again. 

So my weight loss goals are as follows:

 

1.  Be able to wear my wedding ring again comfortably.  (With my arthritic hands, my weight may need to be lower than when I stopped wearing it to get it back on, but I'm going to try.)

2.  Be able to travel with my crutches on short trips such as in and out of a doctor office, library, or friends' homes.  (But no stupid excessive stuff that causes falls and injuries.)

3.  To be able to reduce and potentially eliminate my high blood pressure medicine and to avoid further health damage.

4.  To buy and wear clothing that are not in a plus size store.

5.  To have more energy, more endurance and more strength than I did for most of my thirties!

On to day 2 of turning 40 tomorrow....

Jon's Surgery

Jon had this picture taken by Anita
in May.  She does such a good job.

Jon's surgery was a week ago Monday and at first he was doing really well.  However, the past few days have been hard and he has been especially uncomfortable.  Pain control has been more spotty and an hour or more before it is time for more medication, Jon is in pain.  Of all our children, Jon is the hardest for me to see in pain.  Especially now, when there is little that I can do to offer relief.  Please keep Jon in your thoughts and prayers.  I talk to the nurse in St. Louis again on Monday and hopefully she can offer some new options for pain control.

Jon & Blogging



Our Pediatrician's office (top floor) in Joplin.  They will have
a temporary office next week.  I cannot find a picture of
my doctor's office as there doesn't seem to be anything
left.  Our eye doctor's office is gone too.



Jon's hip surgery on Monday went well and he has only had one set back.  Today they had to give him a blood transfusion due to his blood count falling and his heart racing.  Originally Jon was expected to be in the hospital until Monday, but yesterday the doctors in St. Louis wanted him to come home and be monitored by our pediatrician. However, with the tornado damage in Joplin, we advocated for them to keep him and get him in a more stable condition.  We explained that our doctor's office doesn't exist anymore; she is working out of the Memorial Hall (a civic center) and the only hospital has enough to handle.  Daddy is with him this week and I'm ready for Jon and Daddy to be home, but I want Jon's pain to be controlled and for it to be safe for him to be here.

I have a general policy, not to blog unless I'm "basically" caught up on my "real" jobs....of course, I NEVER really feel caught up, but this month has been exceptionally bad.  I have overdue post-placement reports, invites to the family reunion that are still being returned to me, and more new work pouring in than I have time for AND then there was a tornado in Joplin....you may have heard about it :) We did not have any storm damage other than some water that got into the basement so we are very thankful.  However, just 11 miles north, there are so many needs, so much saddness and so much hope.....SO...I apologize for my blog absence this month, but maybe this weekend will help me "get on top of all my many irons sitting in the fire".  Please keep our family & our community in your prayers.  Pray that the Lord will guide us and allow us to be a real help to those in need around us.  

"Now this was the sin of your sister Sodom:

She and her daughters were arrogant,

overfed and unconcerned;

they did not help the poor and needy."

~Ezekiel 16:49

Pain

Pain is a topic that most people do not want to hear about and it is a topic that only the most socially inept discuss at any length.  In fact we all frequently say, "How are you?".  But what we mean is tell me everything is fine, and rarely do we challenge a person for more details. 

So today's blog is about my pain so if you're asking "how am I?" well the answer lately is "not fine".  Since November, my artritis pain and joint swelling has been at an all time high.  I've caved into taking more than trusty Mega Red Krill Oil (which in my opinion is the best natural arthritist pain remedy in the world) and I'm popping a pain pill daily and sometime twice daily.  Yet the pain continues.  My hand, my foot, my hips, my tailbone and my stump.....yes, even my stump!  I cannot believe the "dumb luck" of having my foot amputated and having the doctor leave just enough of the joint to be able to have arthritis and swelling! So needless to say I've been to the doctor and I'm getting set up with a new arthritis specialist, but they cannot get me in until July. Hopefully, the new specialist will have an answer that I can live with and which I am willing to take.  The last specialist a number of years ago, gave me a drug previously used for chemo therapy which turned out to zap my energy and caused some dangerous side effects.

I have always had pain in my "bad" hip, and if that pain disappeared I'd probably panic and think I had died.  I'm not sure exactly why my "bad" hip always hurts, but it can probably be best explained by the fact that my hip was a playground for various "practicing" surgeons while I was younger.  HOWEVER, I'd definately be pinching myself if it stopping hurting.  I've frequently had pains in my hand and foot too, BUT  the "new" pain is a problem because it causes swelling, reducing my flexibility.  I hate to reach down to the floor.  I hate to stand or hop on my foot.  I hate to get on the floor, because I KNOW I'll have to get up.  THESE are all REGULAR stuff that I have ALWAYS done and suddenly I avoid them.  Needless to say, I've gained weight because I'm moving less SO I'm determined to find time to get some stretching in each day and maybe even some aquatherapy. However finding time with 10 kids is going to be tricky, but it has to happen!

Please keep me and my new aches, pains and swollen joints in your prayers.  I miss getting on the floor to play with the boys and I REALLY miss being able to ignore the pain, which was previously only my reminder and assurance that I was alive.

Therefore I take pleasure in infirmities, in reproaches,

in necessities, in persecutions, in distresses for Christ's sake:

for when I am weak, then am I strong. --2 Corinthians 12:10

Milestones

Yesterday was such an emotional day....I have not cried that much in a long time and for such a variety of reasons! 

First tears of my day came from news that a 10 year old with schizencephaly (same condition as Vanessa) had passed away overnight after a sudden acute complication/illness.  His mother is a part of a group of moms who all have kids with this rare congenital brain malformation.  We all communicate regularly with each other so even though we live hundreds and even thousands of miles apart we feel a close bond.  We can share things that most people wouldn't understand because other people would still be asking what schizencephaly is/if it can be fixed/etc.  We share fears, victories, ideas and most importantly we share a hope that the specialist don't usually have for our children.  Hope is probably our strongest bond, but this year the group has also shared grieving...too much grieving for one year.  Tears had just flowed for a beautiful angel in October, but now again so close to Christmas.

The second tears of my day came as I updated Nate's Caringbridge.  It has been 1 year since his open heart surgery.  I re-read entries from a year ago causing tears and prayers of thanksgiving.  It is hard to believe that a year has passed since the surgery.  So many milestones...1st tooth, crawling, sitting, more teeth, pulling up, babbling, and growing to double his pre-surgery weight and over 9" in height!  So many sicknesses...bronchiolitis, fevers, ear infections, pneumonias and with the support of praying friend, Nate fighting it all off!  I don't know if I have mentioned it lately, but he is one of the sweetest babies in the world!  Nate is such a blessing to our family!

Out to see the movie "Tangled"

The last tears of the day were brought by Vanessa.  She did something ordinary for most folks, but extraordinary for her.  Something that has been a goal of mine for her.  She went out to do something in the community without her wheelchair, without being carried...she went to a movie using only her walker!  I know the irony of a wheelchair-using mom having the closely held goal of her child walking, but you have to remember that I was able to walk from about age 2 to 7 with a brace and then from age 8 to 17 with a prosthesis.  I know the freedom that being able to stand and walk without physical assistance will bring to Vanessa.  Our next goal is to go to Wal-Mart with her walker to buy some clothes, but we will probably wait until after the holidays.  She needs more time to build up her endurance and she currently has me worried that she is having some new seizure activity.  Please keep her in your prayers as we get a new EEG after the holidays.  I'm praying that I'm just an overly anxious mom and that she is not having seizures.  She is such an amazing kid!

Relaxed weekend?

Our Weekend Away:

Nate had a rough week last week with his congestion getting worse, but Wednesday the doctor gave him an antibiotic shot and he started improving.  Therefore, reluctantly Mr. Workman and I decided to keep our plans to go to the Lake of the Ozarks for our weekend away.  Friday evening and Saturday morning we attended a conference.  Friday night we had an enjoyable dinner out.  Then Saturday afternoon we had drove to Windsor, Missouri to see a friend of mine from high school and to speak at a contemporary service at the church she attends. (See picture.)  It was great to see Amy and remember some fun times.  I remember a slumber party in about 8th or 9th grade where Amy created a whole new phobia for me by explaining that she practiced kissing so she would not be a "sloppy kisser" and others chimed in that they did too.  I had never been concerned about such thing, UNTIL then!  It is fun remembering the "crazy" stuff that concerned us girls!

Nate's "Bug":
Nate's cold "bug" stayed about the same while we were gone overnight, but Sunday morning his fever was difficult to get down, his heart rate was staying too high for too long and his oxygen saturation's started dropping.  When his breathing didn't improve after a nebulizer treatment, we headed to the ER in Springfield.  The chest xray when we got there showed pneumonia in both lungs so they admitted him to start IV antibiotics.  However, so far they have been unable to get an IV started so in the morning the doctor will assess and try again or consider a central line or a picc line.

I am so worried about Nate since it is so early in the year to already have a cold turn into pneumonia.  This could make for a long winter.  I'm trusting that my prayers and those of our friends can turn this around so that because it is so early in the year for pneumonia, then Nate has time for a full recovery before the toughest respiratory-winter months.

Cerebral Folate Deficiency

Today was day 4 of Jon being on Deplin to increase the folate that can reach his brain. (The picture to the left was taken yesterday.) I REALLY think I'm seeing improvements but I am trying not to get too excited, just in case it is just me being a hopeful mom. I (and others) have heard him say watermelon, plus he is vocalizing more in general. I think he already is showing more head control, but I'll let the therapists judge that this week.

This means it was also day 4 of no milk products and a nasty soy formula that he won't drink! He will drink the "Very Vanilla" Silk in his cereal, but it lacks the calories and protein he needs. Next week Jon will get a feeding tube put back, which means I will be able to feed the nasty soy formula to him overnight without him having to taste it!

New Diagnosis+Prayer=New Treatment

Today we got that call from the doctor that no parent wants to get....Jon's lumbar puncture found a rare disorder that is most likely the main cause of his cerebral palsy (CP). The new diagnosis is Idiopathic Cerebral Folate Deficiency (CFD). This is a degenerate condition if left untreated (or if the treatments are not successful), but if successfully treated, it can be a regenerative (regain function) condition.

It is a condition that occurs when the brain DOES NOT absorb regular folic acid therefore a medication (AKA FOLINIC ACID) must be given. Regular Folic Acid gets into the brain through a receptor. Sometime when the child is a baby (or in the womb), no one is sure, a virus comes into the body and binds itself with that receptor, therefore the body creates antibodies against the receptor. However if the doctor gives one of several special medications (FOLINIC ACID) it uses ANOTHER receptor to get into the brain as the needed folic acid.

This condition was discovered in 2004 and little is know about the limits/possibilities for regaining function. It seems that the older the child, the less function to be regained. However, a 2008 study had a 16 year old with CP who had just been diagnosed after starting to have seizures and he made miraculous improvements (no seizures, better muscle control/cordination, vision improvements, and learning improvements).

We will be in St. Louis today do more lab work so the doctor can choose the medication and dosage that is best for Jon. Please join us in praying for miracles!

For the eyes of the Lord are over the righteous, and his ears are open unto their prayers: but the face of the Lord is against them that do evil. --I Peter 3:12