Feb. Update

Isaiah is still progressing wonderfully!  He has a few dozen words, a couple two word combos ('want daddy' and 'daddy go').  He's able to climb onto our kitchen chairs which is a huge milestone for him, and we are working on throwing a ball!

At 27 months, the 'terrible twos' seem to be emerging, and they are awful.  Isaiah is clearly frustrated with his difficulty communicating and has been hitting, pulling hair, throwing fits, and all that good stuff.  We really lucked with big brothers, who seemed to breeze through toddlerhood with minimal fits.  Noah went through a brief biting phase when he was getting his first set of molars, but neither ever hit, and fits were only ever seen when they skipped nap time, so it's a whole new learning experience for us!

Isaiah's teacher was here last week and told us that they discussed Isaiah at their monthly meeting with the school district since he should be starting this fall.  She said they just discussed some of his issues, and progress and hopefully we will get to meet someone from the school's special education team when we have his transition meeting in May.  Exciting stuff!

Big Brother's are doing awesome.  Noah's reading is getting better and better, and Eli is almost convinced that his name should always be spelled in the correct order…almost.  We put together their new rooms this month (Thanks to my sister!), and the big boy's will be completed when we get their new dresser this week (hopefully!).  I'll put a few pictures up when we get the dresser.  Isaiah's is a bit of a hodge podge right now.  Eventually we will get bedding that matches the room for his future big boy bed.  And maybe even a headboard :)  It's a bit cluttered with the crib and a full sized bed, but he doesn't mind :)

Brandon is going to be 30 next month!  I'm starting to think about throwing him a party of some sort, and I'm managing to make myself even busier than before with some fun new commitments I'm excited to begin!  

Leaps and Bounds.

Isaiah has made tremendous gains in his speech in the past month.  He's like a whole new kid!  I think things are staring to 'click' in his mind, and we are hearing proof of that!  His word count has greatly expanded this month and we are hearing:

*up, down, mommy, daddy, milk, cheese, yogurt, baba (he's saying brother, but he uses it only for Noah), Ali (for Eli), ouch, owie, all-done, uh-uh (no), mine, ball, uh-oh, shoes, go, book, baby, puppy, nigh-night, cookie, phone, hi, bye, want, bite, and cold are the words I can think of, but there are probably a couple that just aren't coming to mind that he uses unprompted.  He can also repeat a few names if we prompt him, and we are hearing more mimicked words that he will use while we work with him, but we don't hear them again…but he's getting there!

He is also now using 2, 2 word phrases.  "daddy bye-bye" and "Want ____" which is just amazing.

Last week Isaiah was evaluated for occupational therapy services.  His fine motor skills have never been too terribly delayed, but he has some sensory issues (mostly food and comfort related) so we will be starting OT next week to work on some self calming strategies.  Unlike most children, Isaiah never learned to self sooth, so when he is upset or wakes up during the night, he is unable to calm himself or fall back asleep on his own.  His new OT thinks his inability to calm himself may be related to a difficulty in understanding object permanence, as well as related to his sensory seeking (he very much needs to be held and cuddled throughout the day, and needs much more physical touch than the average kiddo) so that's what we will be focusing on.  He has a hard time being away from me, so we will work on some strategies to help with his separation anxieties as well.

In physical therapy Isaiah is working on improving his walking skills.  He still tottles all over the place but has a little trouble navigating toys or other objects on the floor.  He is also working on balance, and throwing balls, and once his balance improves we will start working on kicking.  Also, Isaiah has never tried to bounce or jump (even as a baby he never tried to bounce when held, in a jumperoo, or even in his crib) so eventually we will start trying to get some of those skills to emerge.

With the addition of private therapy for PT, OT and speech, Isaiah has anywhere from 3-5 therapy appointments a week.  Most now come to our home (all except OT) and we have been very happy with the willingness of our private PT and SLP to come out to the house for therapy because it makes life much easier for me, and Isaiah does so much better in his own environment.  I have been so proud of not only Isaiah, but his big brothers as well.  I know they don't have a typical childhood at the moment, and they get dragged around often for appointments and I'm so grateful for their patience and flexibility on days we have a lot going on.

I've recently decided to re do the boys rooms this winter.  I have been wanting to switch their rooms for awhile now, and I am finally going to get it done in the next few weeks.  Both rooms are about the same size, but Isaiah's is maybe slightly larger, and the layout is better for 2 kids sharing.  We are going to switch out the toddler beds for twin beds and move Noah and Eli into what is now Isaiah's room, and move the crib and our spare bed into the big boy's room.  We briefly thought about getting them bunk beds, but anyone who knows Eli knows that's just an emergency room visit in the making, so twin beds next to each other it is!  Isaiah's current room is also the coldest room in the house, and since he won't keep a blanket on during the night, it will be nice for him to be in the warmer room and give Noah and Eli the colder room since they both like to cuddle under blankets anyway :) I'm very excited to do this for Noah and Eli!  We always make sure the big boys get plenty of time and attention, but still, so much focus is on getting Isaiah what he needs so I very much enjoy doing special things for Noah and Eli, and I can't wait to see their faces when they see what I have in mind for them!

And speaking of Noah and Eli, both boys are doing well.  Noah is reading very well these days, and can read most early reader books with no trouble at all!   I'm so proud of him!  He is also quite the artist and loves to sit and draw.  Eli is looking forward to his 4th birthday in a few weeks. He loves building things right now, so he spends a lot of time in his room with his legos.  We are working on writing his name right now.  He can write all his letters, so he's good with making an E, L and I…but he's not convinced that they should always be in the correct order, so some days he's an Ile rather than an Eli :)

That's about all I've got for an update.  I'm in survival mode until spring, and cannot wait to get some warmer weather.  It's been so cold this year and we've had too many days being cooped up inside.  We've made do with a half dozen trips to the Children's Museum this month, but it's no substitute for fresh air and sunshine!  I'll be so happy to see spring!

word count

Mommy, Daddy, up, down, puppy, milk, yogurt, bye bye, nigh-night, all done, amen, cheese, phone, hi, ouch, owie, shoes, uh-uh (instead of no), pa-pa, and grandma (which sounds pretty much like mama), brother.

2013

One year ago we were thrown into the world of special needs parenting, and we haven't looked back!  So here is the highlights of 2013!

*Isaiah had his first evaluation at the Center for Disabilities and Development in January.
*Isaiah started therapy with Iowa's early intervention services.
*Brandon changed the computer password to prevent me from staying up all hours of the night googling possible causes for Isaiah's delays :)
*I decided to take up running again as an outlet for my frustration and worry.
*Eli celebrated his 3rd birthday with a wonderful "mighty machine and onion" themed party.
*Isaiah started crawling at 16 months!
*Isaiah was diagnoses with Microcephaly, a secondary condition in which the brain/head is significantly smaller than average.  He also added a handful of other dx to his list.
*Noah kicked butt in Taekwondo and got a first place trophy to prove it.
*Isaiah started eating solid foods, and at 19 months we were able to take him off formula.
*At 18 months Isaiah started pulling up to stand!
*At 19-20 months Isaiah started taking a few cruising steps along furniture
*Noah learned to read!!!
*I ran a half  marathon...then a full marathon...and never felt better!
*Brandon worked his butt off, and I love him to pieces for it.
*Noah and Isaiah celebrated their 5th, and 2nd birthdays, star wars style
*we added private therapy to the list of things we make Isaiah do ;)
*Isaiah started walking!!!
*we took the most beautiful little baby girl in through Safe Families.  http://www.safe-families.org
*Isaiah went through testing up the wazoo, and we've decided that unless there is a medical need for more, we are done trying to find out what is going on with him, and just let it be.  This was incredibly difficult for me to let go of, but he deserves to be done.
*at 25.5 months, Isaiah's word count came to about 20!
*I came to terms with the fact Isaiah may never catch up...and it's going to be absolutely okay!

This year was filled with tears, joy, worry and hope.  2013 will always be a memorable year for our family.  While I don't like to admit this, it took me a good chunk of the year to come to terms with how life for the Mize household may look in the future, and let go of things I'll never be able to change or control.  But I'm a better mom for it, and a happier person because of it.  We have 3 unique boys, all with completely different strengths and weaknesses, and we wouldn't change a thing about them.

Word Count

Isaiah is on a roll!  He's up to 15 words!

Mommy, Daddy, up, down, puppy, bye, nigh-night, yogurt (guh-guh), Hi, Cheese, Milk, phone, ouch, owie (ouch usually means ouch, but owie he tends to use for anything he's not happy about) and shoes.

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.