Friday, May 31, 2013

They are Just Numbers.....

"They are just numbers."  "Try not to get caught up in the numbers."  These are the responses you get when you're mind is reeling over assessment results....

Last Wednesday, Josiah had his "6-month" assessment.  The "6-months" delineates the time since the last eval (at one year).  For this review, early intervention utilizes the "Michigan" evaluation tool.  The test yields numerical results in each category.  The numbers reflect the developmental age of your child, in each category.

Please note that Josiah is currently 18 months old.

Last week's test yielded the following results:

Adaptive: 10 months

Personal/Social: 14 months

     Receptive: 8 months
     Expressive: 7 months

     Fine: 7 months
     Gross: 8 months

Cognitive: 9 months

I had been looking forward to this evaluation.  I couldn't wait to "see how far he's come."  I mean, he only starting sitting in January.  He began crawling in February.  I couldn't wait until the numbers reflected his great progress.  If he wasn't 18 months old, the numbers would've have seemed so discouraging.

It's hard to explain how a mother feels with something like this.  I see Josiah every day.  I know how much he "knows."  I see how "smart" he is.  He is an inspiration to me, every day.  Then, I see the numbers.  Cognitively, he's a nine month old.  He certainly doesn't seem like a nine month old.  He's 'so much smarter than that.'  That's the Mom speaking.  Josiah is just so much smarter than the numbers reflect.

Motor - 7 and 8 months.  As much as the numbers are disappointing, I can also see the truth in them.  Josiah's older brothers were sitting independently at 6 months.  They crawled by 8 months.  They were walking at 11 months.  Conversely, Josiah was able to sit independently at 15 months.  He isn't walking yet.  He's almost 19 months old.  I know this is common.  I know this is not 'unusual' in the world of extra chromosomes.  We were prepared for this.  We know this, intellectually. 

As parents, we just want it to be different.  We do but we don't.  We don't want to change a thing about Josiah.  He is perfect just the way that he is.  We just want things to be as easy for him as they have been for his brothers.

We want so much for him.  We want so much for our boys.

In the end, I know Josiah will meet all of the developmental goals.  I know he will accomplish amazing things.  I just need to remember that it will all come in time, in his time, in His time.

Here's to perseverance, and patience.

"Patience is waiting. Not passively waiting.  That is laziness.
But to keep going when the going is hard and slow -
that is patience."
Author unknown

Wednesday, May 22, 2013

An Uncle from Beyond

Josiah's maternal uncle S (my oldest brother) died five weeks before Josiah was born. 

S was a troubled soul.  He was a wayward wanderer.  He had had, and lost, a home.  He was married, and divorced.  He had two step-children.  One moved away as a teenager.  The other committed suicide.  S started drinking at age 15 and never stopped.  Drugs were an intermittent habit.  No matter the frequency of addictive substances, it is what took S's life. 

S spent his last years roaming aimlessly, to a certain degree.  He lived his life as a homeless person, spending time in parks and by rivers.  He was in and out of rehab.  He had burned most bridges.  Yet, he had a good heart.  He had a gentle soul.  He cared about others and was always routing for the underdog.  No wonder, he was looking forward to a new nephew.  He, and I, knew Josiah would hold a special place in S's heart.

Five weeks before Josiah was born, S died unexpectedly.  It was sad, yet a relief.  It was tragic, yet a better outcome than some alternatives.  He died instantly and didn't suffer.  He was with friends, and not alone.  It was ok because it had to be. 

Josiah was born and ultimately diagnosed with congenital heart defects and pulmonary hypertension.  Josiah was three months old.  I decided that S must have been taken to be Josiah's guardian angel.  The thought conforted me, if nothing else.

Recently, I had an unusal experience in which I believe I was contacted by S.  He told me he loved me.  He told me he missed me.  Then, he told me he comes to rock Josiah.  Josiah knows when he is there. 

As a general skeptic, I was leary of the message.  Yet, there were other hints given that could only have come from him.  I don't claim to understand.  I don't buy anything hook, line, and sinker; I close my mind to nothing.  I don't know if it's faith, open mindnessness, or wishful thinking.  Whatever it is, I'll take it. 

Josiah is visited by S.  S rocks him.  They enjoy their moments together.  I'm ok with that.

In loving memory of S - thank you for spending time with my son <3

Tomorrow is always promised;
Never assume it is promised to you.
- JS -

Saturday, May 18, 2013

Mother's Day 2013

On Mother's Day, like every other day, I am acutely aware of how blessed I truly am.  My husband is my best friend; our three boys, miracles.  We have happy, healthy, children.  Our needs are met.  We are, indeed, blessed.

When people learn about Josiah (and his Down syndrome), some say "I don't know how you do it."  When they learn about the prenatal diagnosis, "you must have been devastated."  When they learn of those early months and the heart issues - "that must have been awful."  These are not uncommon statements.  Matter of fact, they are quite commonplace amongst new friends.

Do what???  We simply raise our children.  We try to make the best lives possible for our family.  The prenatal diagnosis was not devastating, it pushed us to educate ourselves.  It pushed us to prepare in a way unlike with our first two boys.  We were not devastated; we were grateful for the knowledge and opportunity for growth.  The heart issues were not awful.  It was a serious issue that was fixed (with the amazing help of a few very special people).  Josiah's heart was changed from broken to whole.  The ending was anything but awful.

I don't think I do anything special.  Each day, C & I awake and do the best we can.  Sometimes we yell.  Sometimes we scream.  Sometimes we cry.  Sometimes we laugh.  Always, we protect and love each other and our children.  We go to doctor's appointments.  We juggle school and social commitments.  We try to balance stress and play.  We can't always afford to do the things we'd like but at the end of the day we are satisfied with all we have.  I am not special.  Our family is not extraordinary.

Let me tell you about someone that is extraordinary.  I shall simply call her J.

J lost a father during her vulnerable adolescent years.  Her Dad was 50.  She would complete High School and College, without the admiration of a father in the audience.  She would marry; a dear family friend would walk her down the aisle.  She would dance her first dance without her Daddy's arms.  She would have four children.  She would bury two: one at two weeks, the other at 50.

She would love her children unconditionally.  Her grandchildren would look forward to every moment shared.  She would always say "I love you" to her husband before he retired for the night.  She would hug first, and last.  She would make everyone who knows her, look at her with admiration.

Well into her 70's, J remembers what is important.  She remembers the Lord in everything she does.  She gives thanks for everything, and asks for nothing.  She sacrifices first.  She 'takes' last.  She is a true gift.  May she live for many years to come.

If I live until eternity, may I become half the mother (and woman) she has demonstrated herself to be.

Always remember: Live well.  Laugh often.  Hurt never.  Be grateful always.

I hope you had a wonderful Mother's Day.

Sunday, May 12, 2013

18-Month Visit and Other Stuff.

We brought Josiah to playgroup on Monday, as scheduled.  I think it was the best session yet.  He tried to kiss a few of the pretty girls (his standard protocol).  He cooperated with Miss J (the PT who runs the group).  He was not without complaint - but he cooperated none-the-less.  K came in the afternoon and had a great session with him.

Josiah's speech therapist cancelled their biweekly session on Tuesday a.m. due to a stomach virus.  We were thankful she chose not to share that with us.  It worked out well, as Josiah was able to sleep in (which he loves to do).  We woken him by 9, had him fed, and headed out for his (much anticipated) 18 month check up.

We arrived at the pediatrician's office and were ushered immediately into a room.  The MD arrived and was met with big smiles.  Ears were the first order of business.  Both ears - clear!  Yes!!!  Josiah was very cooperative with the usual pokes and prods.  He was weighed.  23 pounds, 8 ounces.  He was measured.  32" tall.  The MD remarked as to just how well he was doing was a "Down's baby."  I remarked, "For ANY baby, he's doing well."  Please understand, we ADORE this MD & he is amazing with our kids.  I still feel the need to correct certain statements :)

Unfortunately, car problems forced us to cancel the audiology appointment for Wednesday.  With those problems now resolved, I will attempt to get him an appointment for this week or next.  Our PT, whom we had cancelled, miraculously appeared on our doorstep at her scheduled time.  I'm telling you, things really do work out just the way they are supposed to.  Josiah was tired - we had woken him early in anticipation of going to the morning appointment.  He was tired.  The session was shorter than usual.  It was a good session regardless.

Thursday, we took a much needed break.  We never made it to the afternoon playgroup because Josiah fell asleep.  It all worked out fine.  We were exhausted and this gave us a little extra time at home.

Friday was a nice day with Josiah (the big boys were at school).  The afternoon found us running errands, returning borrowed vehicles, picking up flower orders, and even a quick visit to the grandparents house. 

Saturday, our 3 yr old headed to his grandparents for a solo sleepover.  The 6 yr old gained much-needed solo time with Mom & Dad.

It's been a busy week.  A few more blinks and it will be over....

Monday, May 6, 2013

Another Busy Week

It's always hard to believe that it's Monday again.  It seems a struggle to get to Friday then, without warning, it's Monday.  Just like last week, we have another busy week planned.

This morning, I was up early making orange playdough.  It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school. 

Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah).  We have early intervention (EI) playgroup later this morning.  After the one hour group, we're off to do a couple of quick errands.  Then, Josiah has his favorite EI worker, K, coming to see him.

Tomorrow, Josiah has speech early in the a.m.  After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit.  Of course, they'll check the status of his ears at the same time.  Today is day 8 of the medicine, so hopefully his ears are better.

Wednesday morning, we'll be at the Audiology clinic for a hearing screening.  The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month.  They had great luck with him :)   Sadly, we had to cancel PT this week, but she'll see him next week.

Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.

As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet.  I do know that Friday is appointment-free, at least for Josiah.  Hmm.....what to do

Have a great week everyone :)

Sunday, May 5, 2013

Playin' Ball with Mama 050313

Josiah has finally mastered the deliberate release.  He can now play ball (a game which he loves).  Here's a cute video I took the other night.  Enjoy :)

Saturday, May 4, 2013

Just Another Ear Infection

A few times last weekend, I questioned the possibility that Josiah's ears were bothering him.  His mood remained so happy that it was hard to fathom, but certainly possible (we've seen it before).  I've read the some children with Down syndrome don't experience pain in the same way as other children.  I'm wondering if that is true....

Monday morning, we decided to forgo early intervention's playgroup, favoring a trip to the pediatrician.  Unfortunately, they could not see Josiah for his (now overdue) 18 month check up; They could, however, schedule him for a sick visit.  We graciously accepted. 

We arrived about 20 minutes early for our appointment and ushered, fairly quickly, into a room.  After a brief wait, Dr. W arrived.  Josiah was his usual happy self, greeting Dr. W with a smile.  Josiah's congestion from this recent cold was obvious but not concerning.  I explained that I questioned an ear infection.  Within moments it was confirmed - Josiah has a double ear infection.  He never fussed....

While we were there, I asked them to weigh Josiah (because this Mama's curiosity had gotten the better of her).  They did.  With only a diaper on, he weighed in at 23 pounds, 3 ounces.  Holy moly, my little Italian boy. 

We went to the MD for just another ear infection.  We headed home with two ear infections and two medications.  However, we have one very healthy, normal, 23.3 lb, happy little boy....I'll take it!

My Dad and I talked, a few times, about creating a chart.  In essence, to compare the weight/age of the 3 boys.  Dad - I finally did just that!!!  On the X axis, weight is listed.  On the y axis, age is listed.

As of 15 months, Josiah surpasses one of his brothers :)  Yes, this Mama is doing a happy dance!

Cardiology Follow Up

Josiah had open heart surgery on January 25th, 2012.  He was 3 months old. 

The brilliant surgeon closed 7 small holes (vsd's) & 1 very large hole (asd) in his heart.  He was suffering from pulmonary hypertension (half of Josiah's heart was much larger than the other half - caused from Josiah's heart beating "twice as hard" to keep the pressure 'normal') that could prove fatal if not addressed.  After surgery we were assured that the holes were closed, Josiah would recover, and the hypertension would likely resolve.

Josiah had a follow up with the cardiologist approximately 12 weeks after surgery.  The MD said "You would never know this child had had congenital heart disease."  It was suggested that we follow up at one year.

Well, we missed on the one year mark.  We did, however, prepare early Friday morning and headed for the long-overdue follow up with the cardiologist.  We arrived at 9:15, five minutes early.

Josiah received his normal EKG, without regard or incident.  He was weighed and measured.  The MD came in and immediately remarked as to how much Josiah has grown (I assumed, and hoped, that was a good thing).  Dr. P listened to Josiah's heart and asked if we thought he would tolerate a few pics (ie, an echo-cardiogram).  I said, "Sure."

As I dressed Josiah to wait for the technician to be available, I asked "are you worried about something?"  To my delight he replied, "No.  We haven't gotten pictures since right after the surgery.  This is just routine."  We went to the waiting room.  This Mama held onto her usual level of optimism (and hope that news would not be unexpected).

After what seemed like a long wait, we were finally called into the tech room.  I layed on the bed with Josiah trying to keep him distracted from the leads and jelly that covered his chest.  Amazingly, we were done about 20 minutes later.  We headed into the room to await the MD's return.

After a relatively short wait, the Dr. P returned.  Smiling, he announced "Josiah's heart looks perfect.  I don't need to see him for another couple of years."  Ahhh!!!  Music to this Mama's soul <3. 

As promised, the holes are closed; Josiah has recovered; The pulmonary hypertension is resolved.  My miracle boy has a perfect heart.

Thank you, God!