Evaluation update

We took Isaiah in to the CDD for his regular evaluations on Tuesday.  Here's the skinny:

Isaiah grew quite a bit!  The kid is 33.5 inches tall (average for an 18-20 month old boy) and he's 26 lbs (on the charts for his age!  5-10th percentile!)  And his head circumference was 45 centimeters (average for an 8-9 month old boy).  His weight jumped up percentiles, and head and height stayed on his own curve, so we will take it :).   They discovered a heart murmur, which was obviously more worrisome for me than anyone else, so we will just monitor it since it sounded like an innocent murmur.  They also found something with one of his eye.  I couldn't tell you what it was because I'd never heard of it before.  They are referring us to his pediatric ophthalmologist to take a look.  They also said that sometimes there are markers for genetic disorders in the eye structures so they are going to be looking for those as a last ditch effort to find a diagnosis.

Speech:  Isaiah scored at 15-18 months for receptive language.  Expressive language he scored at 22 months which is amazingly higher than what he scored 6 months ago (he was scored at a 12 month level 6 months ago).  Isaiah has never made more than month to month progress before in anything, so this was exciting for us!

Physical:  Isaiah scored between a 20-22 month old for gross motor.   Our OT was gone for the day so he was not assessed for fine motor.  6 months ago he was evaluated at 22-24 months for fine motor, and I'd guess he's still right there since he hasn't made many gains in that area.


So that's that.  We've aged out of the clinic he's been in (or will be in 2 months) but he will follow up with our CDD team annually, and we will stay with genetics every few years and neurology when ever they want us to go in.  Isaiah will be 3 years old in 2 months.  His first year was constant worry about why he wasn't meeting milestones or growing.  His second year was spent trying to figure out what was going on, and his third year was spent embracing his differences.  He's come along way, and so have I.  :D

A SUMMER UPDATE

It's been awhile!  So much has been going on in the last few months and I thought I'd take a moment, while the little ones are sleeping, and the big ones are playing to update our family and friends on the going ons here in our little corner of the world.

Major changes:

*Since Isaiah was diagnosed as intellectually disabled this past spring we have *finally* gotten his waiver services approved!  The waiver is available for any individual with intellectual disability and will give Isaiah access to all sorts of amazing resources when he is older, and now gives us access to respite services, SCL services (working on independent living skills such as potty training, self dressing ect), and medicaid which will be a huge financial blessing as it will cover all of the co pays and out of pocket expenses we have to make with our private insurance.  We met our case worker yesterday, and are now just deciding who we want to hire, or what agencies we want to work with.

*SCHOOL:  We are on track with the school for Isaiah to start anytime after his 3rd birthday, which will just be in a few short months.  We are not sure which elementary building he will be in, but are hoping to find out in September.  Next month we will head to the playground at one of the prospect schools and meet with our current PT, and hopefully the school PT and see what he can and can't yet do on the playground and in the classroom.  We are hoping this will give us a better idea of what we need to work with him on before he starts in November.  Our big team meeting with our early access team, and the school team should take place in September/October.

Minor changes:

*Physically, there isn't a whole lot to report.  He is getting better at walking (actually, he's pretty awesome at it now) and is starting to turn his fast tottle into more of a run, but that will still take a little time and hard work to master :)  He is going down stairs wonderfully, but still crawling up them.  In PT he is working on kicking and throwing a ball, and mastering those stairs!

*His speech is getting better!  His vocabulary is continuing to expand, and he's getting very good at repeating words we ask him to say.  He still speaks as a very young toddler would ('ma' instead of milk, 'buh' instead of up, ect) but he's only getting clearer.  There was even a word he spoke the other day and I swore it was Eli talking!  He's starting to put more 2 word phrases together, but is still very hard to understand if you aren't used to hearing him speak.  We would like his language to get a little better (both in expanding his vocabulary and putting more words together, and becoming clearer to understand) before school begins so he is better able to communicate with peers, but he's always been a slow and steady kind of kid when it comes to development.

*Isaiah graduated OT at the therapy center in May.  He was going mainly to work on some separation techniques (anyone can tell you that he's a little extra attached to mom).  He did really well the last month and hopefully some the things we tried and learned will help make the transition into the preschool program easier for him.  We are also adding OT through early access to begin the brushing program.  If you aren't familiar with the program you can read about it here.  It's different and strange, and there are no scientific studies backing it up, but tons of anecdotal support for it.  It either works for a specific child or it doesn't. Isaiah very much enjoys the brushing, which our therapy center OT introduced us to, so we are giving it a try.  There really isn't anything to lose aside from the time you spend doing it, so if it works awesome, if it doesn't, nothing is lost.


BIG BROTHERS

*Believe it or not, Noah is starting kindergarten in 4 short weeks.  He's very excited!  We have been taking walks in the evening up to the bus stop and home to practice walking along the grass (no sidewalks here) and checking for cars backing up at each driveway.  He's doing okay, but he's 5 so his ability to pay attention to his surroundings has me nervous.  Most days myself, or our neighbor will be able to walk him up in the mornings, and home in the afternoon, so I'm trying not to worry too much!    Eli will be home with mom for another year.  I know he is going to have a hard time without his big brother home, and later without his little brother home, but I'm excited to spend some time with just one!  I of course love all my boys, but very rarely do I get to spend one on one time any of them.  The big boys are still enjoying taekwondo.  Noah is getting pretty darn good, and Eli is at least enjoying it :)  It might be a few months before Eli masters his form, but he likes his classes, and he likes practicing at home, so I'd call it a success!

An update, and new Dx.

Isaiah is on a roll!  We are hearing new words every week, and are thrilled with his continual progress.  He's making slow, but steady, progress with his walking.  He is getting more steady and more confidant all the time!  His quick toddle is starting to turn into a run, and he's getting much better at navigating a living room full of toys.  He's also becoming an expert climber.  So far no giant goose eggs!

Now...onto our other news.  This, quite honestly, is a little awkward for me because it just seems so inappropriate to put in a blog post.  I actually wasn't sure if I would share this with everyone or not, but I feel like we've been so open through all of this and have been so thankful for all of the cheers and support we have received from you.  I also worried that this would sound like sad news, and while it's not what we'd choose for our son, it's really nothing more than new information.  But we had Isaiah's cognitive testing done last week and Isaiah was given the intellectually disabled diagnosis (what was once referred to as mental retardation). While the diagnosis does sting a little, it just means that Isaiah will have access to more resources to help get him what he needs.  Isaiah is now eligible for an ID waiver which means respite, an no more medical bills for him, and lots of other resources!  It really will be a huge blessing, finically, to have the waiver.  And no mom would turn down respite ;)  

So that's the newest info from our little corner of the world.  Noah was just assigned a school for next year, and he is anxious to attend kindergarten round up this month.  Eli is doing great as well!  No broken bones is always a bonus ;)

Your short bus jokes just aren't funny

Today is "Spread the word to end the word" day.  A day set aside to educate people about the hurtful nature of using words that negatively describe, or poke fun at, people with intellectual disabilities.

I'll admit it, in the past I laughed about these jokes, and I'm sure I've even said a few.  I used to use the r-word often.  But now I know better.  And I want you to as well.

Your short bus jokes aren't funny.  Since Isaiah started early intervention I've seen a handful of short bus memes on Facebook, and while those were probably something I would barely notice in prior years, they now sting.  When they catch me off guard they can occupy my thoughts for hours, sometimes days, after seeing them.  When I walk through the mall and hear teenage girls saying "don't be so retarded" I get sad.  When I see movies where the butt of the joke is an intellectually disabled person I have to fight tears back.  It's not so much the joke itself that hurts, it's the idea that no matter how loving or kind, how sweet-hearted and wonderful, and no matter how giving my child is, he will be the butt of someones joke.  He will be less than deserving in the eyes of some.

When you make your short bus jokes, you are laughing at a child, my child, who is struggling with the tasks you take for granted.  You are picking on a group of people who are often more loving, accepting and generous than you will ever think to be.

I don't now if Isaiah will always struggle, or if he will someday catch up.  We have been given a general idea of how he may be based on his current rate of development, and he may be given a diagnosis of intellectually disabled at his next cognitive testing.  I hope he catches up, because no one likes to see their child struggling.  I see his determination when he tackles challenges and I know that if anyone can do it, it's him.  I see how far he has come and know that no matter what his future holds, he's going to give it 100%.  And, I also know that when he starts school next fall he will be riding one of those buses you laugh at.  He will be the bright eyed little blond boy giving hugs to anyone who takes the time to receive one.  He will probably sit on that bus and make silly faces with the aide the entire ride to school.  He will offer his -no strings attached- friendship to anyone willing to accept it.  He will probably give everyone on his bus a hug when he gets off, or at the very least an excited wave goodbye as he gets off and toddles back up our driveway.  And he will probably always forgive you if you tease him for his challenges.  Because that's just how he is.  I hope you also see those qualities in him.  I hope you see his sparkly eyes before you see his clumsy walking.  I hope you see his wide smile before you notice his unorganized speech.  I hope you see his warm expressions before you notice that it takes him a few extra tries to get the hang of something new.  And I hope you can see his joyful spirit before you wonder why he's not like other 2 year olds.

My little boy is a lot of things.  He is developmentally delayed.  He is microcephalic.  He is speech delayed, physically delayed, cognitively delayed, and socially delayed.  But more importantly he is happy, he is silly, he is snuggly, he is funny, he is determined, generous, kind, has a heart of gold, and is loved fiercely.

So, maybe you will take this message to heart, or maybe you will brush it off as an overly sensitive parent who needs to lighten up.  But I do hope, if nothing else, you choose your words more carefully in public.  You never know when a mother, exhausted from therapy and appointments, and who just wants her child to be loved and accepted as someone's friend, is in earshot who will take those words to heart and be crushed knowing the stigma that still exists around the special needs community.

Please check out the website…and take a day to spread the word.  www.r-word.org

The Big Boys' Room

Since they spend several hours in their room each week while Isaiah's therapists are here, I'm so happy we were able to do this for them!  I did some serious bargain shopping…cashing in credit card points, and checking websites daily until we found the furniture on clearance.  My sister found the hulk nightlight on a garage sale site and the artwork above their beds were a clearance find at the craft store.  And the little red chair used to be a little cream colored chair that I had as a little girl!   This bedroom has a smaller walk in closet which we turned into toy storage, so we could have all their favorite toys up in their room rather than the play room.   They really love it, and enjoy spending time in their room now.  It used to be a chore for them to go to their room for therapy, but they never complain now!   (Isaiah is uninterested in the therapists if he has his brothers to watch, and would rather just sit and watch them than do anything, which is why brother's are asked to play upstairs for therapy).  I hope when the novelty wears off they continue to enjoy it as much as they do now.

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.

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.