November update

I'm not going to commit to one of those daily thankful posts for the month of November, because there's really no way I'll remember to do one everyday...but I will say that I am always thankful for all EIGHT! of Isaiah's regular therapists!  I'm pretty sure they have all fallen head over heals for all 3 of our guys, and they have made such a difference this past year!  One year ago, Isaiah had just started sitting up on his own, and he wasn't babbling, crawling, or eating, and at 12 months he was socially at a 4 month old level.  Today, just shy of 2, I'm watching him walk around the living room with a grateful heart!  (wobbly and falling all over the place, but walking!) He's eating on his own, he's got a handful of words, and he's the most social and charming kid I know!  I'm incredibly grateful for the AEA, the Center for Disabilities and Development, and for our new team at the Children's Center for Therapy!

I have lots of progress to report!

Speech:
     New words!  He can now say Mommy, Daddy, up, bye, night night (ny ny), down, puppy, cheese, shoes, and ouch!  It's awesome to see progress being made!  We are starting speech at a private center this week.  He will go every Wednesday for speech, then PT.  We start with once a week until he warms up to it, then if he's tolerating it well, we will add another session each week.  It makes for some crazy weeks, since this is in addition to his current in home therapies, but well worth it if he can handle it (which I'm sure he will...it's pretty much just play time, and he loves all his therapists!).  10 words and 2 might not seem like a lot, but it's pretty amazing progress for Isaiah!

Gross Motor:
     He's walking!  He can't walk far, and he's really wobbly he falls a lot (but get's right back up!) but walking is now his main form of transportation!  He still crawls, but he always tries to walk first, which is just absolutely amazing!

Neurology update:
     We really liked his neurologist!  We didn't learn a whole lot of new information, but knowing there are no abnormalities with his brain/head, other than being small is very comforting to know!  The neurologist said they will continue to monitor his head growth through his regular CDD appointments, but unless we wanted to pursue more testing there wasn't much he could tell us.  He said whatever he would be looking for would be treated with the therapies we are already doing, so we decided not pursue any more testing in that area.  He does have a few markers for some neurological things (obviously the microcephaly, as well as brisk reflexes) but nothing that stood out as a definite diagnosis.  The neurologist said Genetics is where we need to be, so we will see what the geneticist says later this month!

The Big Boys:
     Both are doing awesome!  Noah is going to be 5 in a few weeks, which just seems crazy.  They are both really into coloring/art, board games and Noah is improving his reading skills.  They are both so good with Isaiah, and just adore their little brother.

October Update

The summer went by much too quickly!  It's hard to believe October is already just about half way over as well.  Goodness!

Isaiah is going through a developmental spurt, which is always incredibly exciting since he seems to have spurts, followed by months and months of nothing.  His last big spurt was April/May when he started pulling up and cruising, and saying a couple words.  Since then he had just been perfecting those skills, but in just the past week we have seen some exciting changes!

Speech:
Isaiah went  from 3 words, to 8!  EIGHT!  words in just the past couple weeks.  He can now say: Mama (sometimes mommy), Dada (sometimes daddy), up, bye, nigh-night, shoes, ouch, and just today he started saying hug.  Isaiah has been diagnosed with Mixed Receptive-Expressive Language Disorder, and an articulation disorder.  We are meeting yet another new therapist later this month to help work on his speech, so I'm hopeful that we will continue seeing some new words with a little more frequency here soon!

Gross Motor:
Isaiah has been cruising for awhile now.  He's getting quicker!  At the very end of August Isaiah stood on his own for a few seconds twice in one day, and even took 3 steps on his own...after that day he waited over another month to stand again (always just for a couple seconds) and he just this past week has been getting brave enough to take 1-2 steps on occasion between objects.  I was really hopeful that he would be walking more by his second birthday, and while I don't think he will be walking, he will hopefully be taking 2-3 steps at a time by then.  We are also starting with another physical therapist at a new center to see if that helps!  He will be in therapy several times a week but they are willing to come out to the house, just as our early access team does, as often as they can.  So I'm hoping that we will only have to go to the center once every week or two to make it a little easier for him!

Other:  He's doing better with eating, getting picky but that's something we will have to work on later.  Right now we just need to make sure he's getting enough calories and nutrition since he is so small for his age.  He has also been having night terrors, which seem to be much better the past week!  In the last week, he has only had one terror, when he was having them nightly.

Upcoming appts/meetings:
*Oct 22, speech evaluation
*Oct 23, physical evaluation
*Oct 31, MRI and new patient appt. with neurology
*Nov 22, genetics
*Nov 26, well baby
*We are due for another IFSP meeting in November as well.  Hoping our normal service coordinator will be back from an extended medial leave by then!  Before the IFSP meeting he will also have another set of evaluations done by the AEA team.  These aren't yet scheduled, but will be sometime in the month.
     **These appts are all in addition to his therapy sessions, so the next several weeks will be pretty busy for Isaiah.  He's always a good sport, but I can tell he gets frustrated by being in offices so much when we have busy weeks and he gets extra clingy and fussy during these busy months.  So please keep us in your thoughts and prayers this month!

Believe it or not, in the next several months we will be meeting with the school district to plan for Isaiah's transition from early access into the ECSE (early childhood special education) program at school!  Isaiah will be going to school next year (he can start on his 3rd birthday!).  He turns 2 next month, and the transition meeting will be in February.  I can't believe it!

Microcephaly

Here is a photo that can maybe help answer some questions I've gotten about microcephaly.  Microcephaly literally means "small head".  It is actually fairly common (2-3% of the population could be considered microcephalic).  For someone who is very small, it would be expected for the head to also be very small.  Isaiah is small, however because his head is also small for his body it has become concerning.  Isaiah is the size of an average 14 month old, but his head is the size of an average 8 month old.  So, if Isaiah was 14 months old (so his size would meet his age), he would still be considered to have microcephaly with his current head circumference measurements.  If, at 21 months of age, Isaiah was the size of a 14 month old, and his head was also the size of a 14 month old, that would be far less concerning, since his head would be porportionate to his length.

If you google microcephaly you will get all sorts of photos of individuals with varying degrees of micro which I think is confusing for people.  Isaiah's is certainly not as severe as some children's and for the most part we don't even really notice the difference when looking at him until he is next to children of the same size (length) as him.

I've had several people ask what this diagnoses means for Isaiah, and the answer is simply 'we don't know'.  He will likely always be very petite.  If you calculate his likely adult size based on his current length he would be about 5ft as an adult, give or take a few inches, but those predictions can be very inaccurate.  He may have a harder time in school, or he may catch up and show no differences in learning.  We just don't know.  What we do know is that Isaiah is getting every resource we can provide him him with in order to reach his full potential, and he has an incredible support team of family, friends, and therapists with absolutely no lack of love and affection.

Evaluation Update

Isaiah had his 4 month evaluation at the CDD today.  Here's the quick update (I'm exhausted so I won't go into much detail...feel free to call or email with questions, or if you want to hear the more detailed version)

Gross motor Isaiah is still at a 10-12 month level.  So unfortunately there was no real improvement since he was evaluated at a 10-12 4 months ago.  She noticed improvements, but since his progress is so much slower than a typical child, it still puts him in that same age range.  Bummer.

Speech he's around a 12 month level.  He was at a 8-10 month level, so that's pretty good progress.  Pretty much the speech gap isn't closing, but it isn't getting any wider so that's good.

The best news of the day was that in fine motor he scored at a 16-20 month level, which puts him close to his actual age (21.5 months).  That gap is shrinking!

Isaiah was Dx with microcephaly at his last evaluation, and unfortunately his head growth is still a concern.  They also diagnosed him with 3 other forms of cephaly (I can't remember which ones without going to check on his discharge report).  One had to do with head shape, and the other had to do with the measurement from the front to the back of the head.  At this point it's time to do brain scans.  Not happy news for me, as he will have to be put under general anesthesia, but the good news is that we've already met our insurance deductible, so it should be fully covered.

His nutritionalist was happy with his weight.  He's 21 pounds, and 30.5 inches.  He's small.  He's in the 0.1 percentile for his height, but his height to weight ration is great, so he's getting enough nutrition.

So that's it.  He should be scheduled to go in for his scans in the next 2 weeks.

UPDATE:  I forgot to mention in the initial post that she also mentioned that Isaiah's reflexes are brisk. I'm not really sure what that means for Isaiah, but it can be caused by some neurological things.

UPDATE #2:  These are the additional cephaly dx and a description.

     *BRACHYCEPHALY occurs when the coronal suture fuses prematurely, causing a shortened front-to-back diameter of the skull. The coronal suture is the fibrous joint that unites the frontal bone with the two parietal bones of the skull. The parietal bones form the top and sides of the skull.

     *Positional Brachycephaly 

     * PLAGIOCEPHALY results from the premature unilateral fusion (joining of one side) of the coronal or lambdoid sutures. The lambdoid suture unites the occipital bone with the parietal bones of the skull. Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is a common finding at birth and may be the result of brain malformation, a restrictive intrauterine environment, or torticollis (a spasm or tightening of neck muscles)

Oh, Eli

Eli.  What a kid.  Anyone who knows him, knows what I mean.

Eli is 3.  He is smart, and playful, funny, adventurous, (a little naughty), and the kind of boy who, at the end of the day if he's not covered in an inch of grime, must be sick.  He owns several pairs of shoes, but never keeps them on more than 3 minutes at a time, he likes to catch beetles and worms but thinks  butterflies are horrific.  He likes to catch turtles with his daddy, fishes with his net, and builds dirt pile towers.  He loves 'mighty machines' and will walk around with bleeding knees as if he doesn't even notice he's just whipped out.  He always has a knot in his forehead, and dirt in his fingernails.  He's golden brown with bleach blond hair all summer long, and runs around outside in his jammies, just because he doesn't want to waste time getting dressed.  But best of all...he's a bit of a momma's boy.  He's a cuddle machine, gives nose nuzzles and snuggles into the space between my shoulder and chin when he's tired, or just on occasion between his wild adventures.  If he has a bad dream he won't make a sound...just quietly crawl into bed with us and snuggles close.  

He has the sweetest voice you'll ever hear.  He's a little hard to understand sometimes, and thinks grabbing our faces between his hands will help us understand better.  He likes Luke Skywalker, and Captain Hook and LOVES Curious George and thinks Buck Denver is the funniest thing around.  He sings in the car, which could melt the hardest of hearts.  At night before bed you can count on him asking for a story from daddy and I can hear him giggling and squealing from downstairs in the kitchen while he listens to his bedtime adventure.

He looks like his momma, but acts like his daddy.  He is the perfect mix of wild little boy, and loving child.  Another one of a kind, good hearted, little Mize boy.

All About Noah

I've been using this blog primarily as a means to share updates about Isaiah's issues and progress but I wanted to give Noah and Eli each a post of their own.  They have also changed so much in the last year, and while I may not talk about them as much on here, they are just a fabulous and deserving :)  I have been blessed with 3 of the most amazing children there are.  I know every mom says that...but it's actually true in this instance ;)

Noah is going to be 5, FIVE, in 3 months.  I can remember 5 years ago being big and pregnant, enjoying his hiccups (seriously that's all he did in there) and waiting impatiently to meet him.
And here we are, 5 years later, talking about birthday party plans, starting school next year, and wondering where the time has gone.  When people stopped me with a brand new baby and said things like "enjoy this, time goes by way to fast" I mostly rolled my eyes thinking 'time will go exactly as fast as it always has'.  But I was wrong.  Somehow things just speed up when you have little ones.

Noah is not your average nearly 5 year old.  He's wise beyond his years, caring, hyper aware of everyone's feelings and tender, and caring, and loving.  Last week I came down with the stomach flu and Noah was the one taking care of me while Daddy was off at work.  Noah got me diapers for Isaiah, he got me water and crackers and helped get Eli and Isaiah fed.  He filled sippy cups with milk for Isaiah, and poured himself and Eli drinks.  Seriously, what 4 year old does that?  He said things like "mommy, I hope you feel better", and "mommy, how's your tummy?"  He woke up in the morning and got clothes ready for Eli.  He got movies started so I could sleep in.  What 4 year old does that?

Not only is he helpful and caring, kind and considerate, but he's hilarious and imaginative.  Today he told me, as seriously as possible, "I'm no longer a boy.  I'm turning into a super hero and you must now call me Memory Man".

And not only is he helpful and care, kind and considerate, hilarious and imaginative...he's growing into the kind of Godly man I hoped he would.  He has started (and these are his words) 'sharing the good news' with people.  I have overheard him have conversations with his friends where he says things like "Did you know Jesus died so we could go to heaven?  And now he is no longer dead".  It's simple, but it's the start of something amazing.

I have been blessed with three, one of a kind, sons.

Summer update

We've had a pretty eventful summer so far.  We've spent several hot days at the children's museum, taken trips to the zoo, swimming pool, a trip to Missouri, a few parades (which Noah was in with his tae kwon do school) and lots of therapy changes for Isaiah!  In May we added speech therapy to his IFSP, at the end of May we learned that Isaiah's service coordinator would be taking a leave for 4-5 months so we were temporarily assigned to another, and in mid June we learned that his teacher would be retiring at the end of the month.  We have not yet met with the substitute service coordinator, but we have met with his new teacher and we really like both her, and our new speech therapist.

Physical therapy is going well, Isaiah is using his walker really well, and actually enjoys using it which is exciting for us.  He hasn't made any huge improvements in the last few months, just perfecting what he's already doing.  He is cruising along the furniture, and crawling as quick as can be.  He has also started climbing onto the fireplace ledge, his rocking chair and other close to the ground obstacles.  Our hopes are that he will be able to stand unassisted, and maybe even taking a few steps on his own by his second birthday (which is only 4 months away!).

We've only had a few sessions with his speech therapy but he has been doing well so far.  He's a quiet kid, but he's making more sounds.  His meaningful words (used regularly) are 'Mama', 'Dada', and 'up'.  We have just started hearing him say 'thank you' fairly regularly as well.  He can't speak much, but when he does he's polite ;)  

Isaiah hasn't had feeding therapy since May but he will go back every day for a week in August to work through some of his troubles and have been documenting each time he chokes or gags to decide if he needs a swallow study done.

So that's about it!  Isaiah's next round of evaluations at the Center for Disabilities and Development is in about 6 weeks, and he sees the geneticist in November.

Normal.

We got a call from the doctor Monday.  Usually when they call it's bad news, and good news you just find out online in the patient chart, so naturally when I saw the CDD's number pop up on my caller ID I about tossed my cookies.  But it was good news.  Or at least not bad news.  She told me that Isaiah's microarray test came back normal.  I was elated for about 2 second before she kept on talking.  This is good news, but it doesn't mean there isn't a chromosomal abnormality, it just mean he doesn't have any of the chromosomal abnormalities that the microarray can detect.  So we will, for the time being, just do what we're doing until we meet the geneticist this fall.  He will be better able to pick and choose specific tests to run based on Isaiah's symptoms to test more specific genes, if he feels as strongly as the developmental pediatrician does about the possibility of a genetic disorder being a possible answer to his delays.  And while I really do want some answers, I am happy to say that no answers are better than bad ones.

May.

May has been one of the craziest months on record for our family.  Isaiah just finished his last of 14 appointments for the month!  He had his ultrasound, genetics testing, nutrition, physical therapy appointments, speech, his teacher visits, an IFSP meeting, feeding therapy his 18 month visit and an trip to the doctor for an ear infection.  I'm pretty exhausted, and very happy to see the end of May.  I am also trying to come to terms with the idea that doctor visits, therapies and arguments with insurance are just a fact of life now.  I don't know how long this will go on for, but I do hope I can get used to all of it.

Isaiah had his blood draw for the micro array chromosome testing done a little over 2 weeks ago.  I'm getting antsy for the results which will hopefully come in just another couple weeks.  His ultrasound came back completely normal, which was just what we expected :)

Next week Isaiah will be getting a walker.  We are excited to get him up and going, and I think he will really enjoy being able to chase after his brothers a little better :)  Here is a picture of what they are bringing for him

So that's the latest from the Mize clan :)  Noah and Eli are still doing amazingly well.  Noah is getting really good with reading/writing (he even wrote the word paper on his own, without help, just by sounding it out...he spelled it PAPRE, but it's still pretty awesome for a 4 year old).  Eli is working on learning how to write all the letters in his name, but beyond E, L and I he has absolutely no interest in writing, which is just fine for now.  Noah is going to an all day camp on June 8th, and this will be the very first time he has ever been anywhere without a family member, so I'm pretty nervous, and he's pretty excited!  And I think we'll use the day for a mommy-Eli date :)  

A little update

In my last post I mentioned that the chromosomal testing was recommended based on Isaiah's delays, size, as well as several congenital abnormalities.  Since then I've had several people ask what those abnormalities were so here's the list she had in his report:

Microcephaly
Pre-auricular pit
Flat nasal tip
3rd toe underlapped bilaterally
Unilateral undescended testicle
High pitched unusual cry
Small stature
Delayed developmental milestones


Since that appointment we have gone ahead and scheduled his ultrasound (because of the association between ear abnormalities [his ear pit] and renal anomalies) for next week.  We are still playing the back and forth game with insurance to see if we can get the chromosomal testing covered, but I am hoping they get it sorted out so we can have the blood draw done that same day.  Once we do the draw we should get the results in 4-6 LONG weeks!  We have also been referred to genetics for a genetic consultation in November (no clue what they will do) and we will be back in for another evaluation in 4 months with the whole CDD team.