October 19, 2014

A Beautiful Place

This morning we were in the woods on our property
 gathering and splitting firewood for the winter
 I have so many happy memories of this annual job and I always look forward to firewood weekends
 We live in such a beautiful place that it hardly seems like work
And this precious face smiling at us from the wagon doesn't hurt either.
What is your favorite fall place?  Do you have a job you love to do in the autumn?

October 18, 2014

Autumn


We are delighting in autumn, the falling leaves, the beautiful light, and the new beginnings.
We are looking forward to cutting firewood, the smell of the wood stove and candles on cool autumn evenings.  Crockpots, soups and everything made with delicious fresh baked pumpkin.
Today we went to the pumpkin farm.  And it was perfectly normal.  It was wonderfully the sort of thing we always do.  When the big girls were little the rule was they could only get a pumpkin as big as they could carry in from the field.  Samuel decided he wanted this pumpkin.  He could scarcely lift it.  It weighed in at 50 pounds.  Samuel doesn't even weigh 50 pounds.  He asked if he could bring it home even though he could only carry it a few yards.  I agreed.  We do eat a lot of pumpkin.  The big girls decided kids are too soft these days.
Do you know what I love?  I love that my big kids get as excited about the pumpkin patch as my youngers.


I love leggings and boots and chubby little hands hugging a tiny pumpkin
I love this amazing group of people


I love that God has given me another season to have three little ones on my lap
I love that everyone is so curious about what is happening that no one is paying any attention to this photo

Getting so big... this was the summer Carmella stopped being a baby and became a little girl

And as tiny as Addison seems, he isn't so very far behind Carmella

And this one is simply so big!  Yesterday she pulled out her first grade reader.  This morning she handed it back to me finished.  I guess she will be moving up to second grade. 

Oh, autumn.  What wonderful exciting things lie ahead?  The mums are full.  The leaves are red, orange and yellow.  The cider is ready.  Another wonderful season is upon us. 

October 17, 2014

Addison Updates

One downside to taking a nice long vacation is eventually you have to pay the piper.  It takes three weeks to get all nice and relaxed and forget you have a bunch of trials at home and 24 hours after returning home you are right back where you started.  In this case we returned home to two full weeks of appointments for checkups, tests and evaluations.  The downside is we need another vacation.  The upside is mostly we've gotten good news for a much welcomed change.  I know those who have been waiting for news will be completely shocked I am getting you an update so quickly.  I am kind of shocked, too.  We appreciate your love and concern for Addison and for our family.  We also appreciate the willingness of friends and neighbors to jump in and help with the other kids appointments when things got shuffled around at the last minute.  I think I am pretty good at organizing, but I have yet to figure out how to be in two places at once!

Orthopedic Update

Tuesday began with a trip to Children's Hospital where we saw Elisabeth's doctor as well as Addison's orthopedic and head neurologist. 

Over the course of prednisone treatment Addison's hypotonia became far worse.  He eventually lost the ability to sit up on his own and lost all movement he had gained over the previous 15 months including scooting and rolling over.  We were very happy he started rolling over on his own just a few days after completing the steroid wean.  As of today he is also doing a very good job of sitting and he is beginning to make efforts to reach for toys and move across the floor.  Albeit mostly in a circle or backwards.  But you have to start somewhere. 

After starting prednisone Addison's spine began to protrude considerably.  In addition to spine issues common for people with T21, long term and high dose use of prednisone can cause bone weakness, spine compression and fractures.

After an evaluation with Dr. O and x-rays (in a really cool x-ray lab) there did not appear to be any compression or fractures causing the issues with Addison's spine.  It is Dr. O's opinion therefor that the protrusions in his spine at this point are caused by the severe degree of hypotonia and as his body continues to recover from the steroids and we work on PT to build his muscles back up we will see also see his spine recover.  

Neurology Update

Tuesday we were very eager to meet with Addison's neurologist.  We were able to report he had been 15 days without a seizure.  We requested Addison not begin any medication at this time while we wait and see what develops from his myoclonic seizures. 

Dr. R was very surprised Addison was not having seizures.  He agreed without reservation it would be acceptable to hold off beginning treatment right now.  On examination he felt Addison was looking good, showed much improvement from his last exam and showed nothing concerning in regards to physical symptoms related to seizures.  He did caution in his practice he has only had one patient who had Infantile Seizures followed by myoclonic seizures who remained seizure free.  In the case of that child he said it was questionable whether he was having myoclonic seizures or modified infantile spasms.  In Addison's case he said there was definitive activity on his last EEG to know for certain he was having myoclonic seizures as of September 17th.  This means there is a very high likelihood Addison will continue to have seizures.  However, he also said every single day Addison goes without a seizure increases the chances of him remaining seizure free. 

As of October 15th Addison has been seizure free for 17 days!!! 

Because of the timing at the onset of myoclonic seizures, Dr. R does not feel they are a rebound from the Infantile Seizures, Hypsarrhythmia or prednisone. 

Dr. R did make mention there was fluid on Addison's brain in the MRI back in August.  This could be caused by the prednisone.  He will have another MRI next summer to monitor this and the brain atrophy.  While Dr. R had reservations neither Allen nor I are particularly concerned.  There is nothing we could have done differently.  God will take care of the rest. 

In the meantime, I think it is safe to say, on the seizure front Addison is doing amazing!!!  So well, in fact, Dr. R said unless he starts having seizures again, we don't need to come back for 3 months.  And if he continues to not have seizures then we won't need to return for 6 months. 

While we are grateful for all Addison's neurology team has, is and will continue to do, we are most grateful for the intercession of the faithful prayer warriors and the healing of our great physician. 

Ophthalmology Update
 

Next up was Addison's Ophthalmology checkup.  Dr. P reported no further decline in regards to Addison's astigmatism or nearsightedness.  His eyes continue to remain balanced, as well.  She was concerned about the crazy head tilting thing he has been doing for a while.  In light of his seizures, we have had concerns about this as well.  However, after closely studying it the neurologist does not feel it a neurological issue.  And, after carefully studying his eyes,  the ophthalmologist does not feel it is related to his vision.  She advised us to take the issue up with his Physical Therapist for further evaluation.
 
 
 
 
 Pulmonology Update
 

Way back in the far recesses of our life, before seizures, Addison's geneticist was concerned about episodes of cyanosis.  He has had spells of turning blue since he was born.  Initially, this became worse during feedings and was thought to be related to his ASD.  After meeting with his cardiologist, Dr. M believed this was in no way related to the hole in his heart.  He also believed it would pass as Addison grew. 

And, after a time, we didn't see any episodes for a while.  And then when he was six months old he had a severe spell while napping on his back in the buggy.  When we woke him up he was the same shade as Allen's Levis.  It took the remainder of the day for his color to return to normal.  We were seriously concerned at the time. However, it was several weeks before we returned to Maryland and met with his geneticist.  At that time he had no more episodes so that was that. 

Until April.  The week he turned one, Addison ran a very high fever for a week with no other symptoms.  Except, he had two more episodes where he turned blue and took a long time to recover.  We mentioned this during his routine check with the pediatrician.  She felt it was related to the fever.  He was still feverish the next day when he was scheduled for his regular checkup with the geneticist.  She did not feel it was related to the fever and was concerned it may be related to one of several pulmonary issues common in babies with DS.  At that time she referred us to the pulmonologist.

But then the seizures started and this issue took a far back burner to hyppsarrhythmia.  In the meantime Addison has been under sedation three times for surgery and tests.  Each time he had to have oxygen because he stops breathing briefly in his sleep.  And so we found ourselves meeting with Dr. Z.  Who is simply amazing.  The funny thing is Addison is doing so well we both went into this appointment thinking it was going to be routine and a waste of time.

As we already knew, Dr. Z pointed out how very tiny his airways are.  She feels Addison's cyanosis is concerning.  After examination she believes it is caused by sleep apnea or by the interrupted brain activity from seizures.  When looking back at his history, we believe the hyppsarrhythmia probably began at the same time he had the severe spell in his buggy last October.  Furthermore, he has not had an episode in the last few weeks since the seizures stopped, which would lend itself to the seizure theory.  We could wait and see.  But Dr. Z feels, because of the length of time it takes to complete testing and start treatment... and the degree of his cyanosis... and because he has had a number of episodes upon waking, it would be more prudent to do a sleep study now to rule out sleep apnea.  People with T21 are at very high risk for sleep apnea anyway.  Add to that his impossibly small airways and his degree of hypotonia and that puts him at a still greater risk.  With all that said, the doctor feels it would be a good idea to have a baseline study done now.

We walk away from this appointment once again considering perspective.  Addison not breathing in his sleep could be a rather scary prospect.  But when you consider it in the light of where he has just come from it doesn't see so very frightening at all.  Although, the prospect of yet another night in the hospital is not so very fun.

Two of our appointments were rescheduled so our last stop this week was a trip to the pediatrician for flu shots.  It has definitely been a busy week when I consider we were lying on the beach a mere 7 days ago.  And yet, with so many good reports, it has been a refreshing week, in an odd sort of way.  Thanks for your emails, texts, letters, calls and constant prayers.  It is the Lord's care, the prayers of His people and the love of those around us which have brought about Addison's great success.

And so as an expression of my undying gratitude, I will leave you with this completely adorable video of Addison learning to blow kisses.

video

October 13, 2014

Back To Real Life


It only took 5 minutes to load the bikes in the dark this morning.  Not bad at all since it took an hour in broad day light before we left home.

All loaded up we took one more minute to smell the salt air and have some prayer time on the beach to hold us til next year.
Some things worth coming home for... A real store

And pumpkin spice lattes
Target has become a regular stop on our road trips on account of Elisabeth gets very car sick.  Allen knows where all the Target/Starbucks combos are between Maryland and Orlando. He determines their bathrooms are cleaner than truck stops.

Besides it gives Henry a little play time while the rest of us load up on coffee.

Traveling with Carmella can be quite an adventure.  The commmentary from the row behind me is hilarious.  At one point I laughed so hard I thought I might choke to death.

While stuck in a six mile back up in North Carolina she pointed to the guy next to us (who might have been one of those Duck Dynasty guys) and said, "That guy looks scary."

So we stopped on our way through town to get groceries and look what I saw.

What happened to fall and Thanksgiving and all that comes in between??? Why is everyone in such a hurry these days?  Wasn't it 80 degrees just this morning???

And there you have it, I suppose.  We must be back to real life.  



October 12, 2014

Borrowed Time

Midweek we started asking Allen to take one more week off so we could stay a little longer.  He reminded me Addison has three full days scheduled at CNMC next week.  I said I would reschedule.  He said he had lots going on at work that he could not reschedule.  So we packed and cleaned and made ready to leave.  As we were putting the kids to bed on our last night in preparation to leave at 4 the next morning our land lady called. The weather is so nice she said please feel free to stay longer if you would like.  Oh, man!  It's not often a perfect stranger offers you free stays in their very nice vacation home on the beach.  Alas, Allen still could not extend his time off work, but we did stay on one more day.

What do you do on borrowed time?  

You start by bribing friends back home to feed the critters one more day.  Thanks, guys!!!  Love you.

We were so happy to have one more chance to worship with our friends on Sunday morning.  Terrible picture because Allen swung his hand up to high five Henry just as I hit the button.  But it was a happy picture.
We spent the afternoon visiting with our friends from chapel.  And had one more bike ride to worship.


This is also an awful picture but I will cherish it.  We have know this man for 12 years.  He is so much like our late Pastor Louis.  We just love him and his wife so much.  Brother David is like a far away uncle to our family.  Carmella is scared of everyone.  Even people she knows well she will shy away from.  I have worked so hard to get her past this.  Pastor has just stood back and waited for her to warm up to him.  Which I did nof figure would ever happen.  Last night after service we were visiting and Allen told Carmella to shake hands with Pastor to say goodbye.  We say these things always braced for a training session.  But instead of pulling out her shy response Carmella said "I want to give him a hug."  When she ran up to Pastor and jumped into his arms for a hug a cheer went up in the church.  I'm claiming victory!  

Pastor said between that and Addison being 14, YES FORTEEN, days seizure free it must be a sign from God that we need to move down here.  Every year It gets more difficult to argue that logic as we find it harder and harder to leave.

One of our friends at church have us a cake which we paired with ice cream for dinner since we tossed all the groceries on Saturday night.  We finished Tom Swift and read another chapter of Stuart Little.    

But mostly,  we were just thankful for one more day to be together before we face the rigors of real life again.


October 11, 2014

When There Is Just One Day Left

What to do When you have just one day of vacation left...

Enjoy this boy napping on my shoulder
Splash in the waves

Build one more sandcastle

Admire Carmella's skills with some sand and a bucket

Take one more nap and one more bike ride

read one more chapter and eat one more scoop of Ice cream

hug all your friends

 Just one more time 


ride the Ferris wheel
And capture


just one more memory for the road.




My Boys

I love these boys.  And I love every minute I get with them.  They are growing so fast and I know soon we won't have these times together.  I am trying to enjoy each moment we have.

Saturday morning I was wakened very early by one of the kids staying above us.  Once I am awake there is rarely a time when I can go back to sleep.  I decided to wake the boys and go out to the beach.
We swung and walked and talked and watched the sun come up together 
I remember taking their picture under this peer when Samuel was just learning to walk.  Now they are practically men.  I hate that time goes so fast!

But I'm thankful I get to watch it pass with such an amazing family.


The Ferris Wheel

There was a festival on the beach this weekend.  With it came the Ferris wheel. 


How to be the most popular family on the beach


Bring 9 fun loving kids
And a jug of vinegar

The two on the left are not ours.  They are Gabriel and Alexander.  They just joined us for a family photo.  It seems no matter where we go we attract people.
And the vinegar?  Jelly fish were abundant this year.  And jelly fish stings go with that.  Over the years we've had enough jelly fish stings to know vinegar is the best cure.  Everyone but myself has been stung.  Which, statistically, puts me in a bad spot.  Over the last few weeks I lost track of how many times the boys ran inside to get the vinegar.  I also lost track of how many people approached us because they got a sting and saw we had vinegar.  The girls said we should set up our own first aid station.  We met some great people and had some great laughs all because of a two dollar jug of vinegar.

Just for the record... Official first aid for jelly fish stings.

1... Keep the area where you were stung under the water until it stops stinging.  You can not see the stingers but they are there.  The salt water helps remove them.  Think Epsom salt soaks for bee stings, splinters and ingrown toe nails.

2... Flush with vinegar for 30 seconds.  We just pour some on and let it sit a minute.  Then pour some more on and wait another minute.  And repeat one more time.

3... Spray with first aid spray like lidocaine as needed.  

4... In a day or two it will swell up again and itch like crazy.  Use lidocaine and hydrocortisone topically and Benadryl by mouth to relieve the itching.

So, if you lack 9 kids and you want a great party at the beach don't forget your vinegar.