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.

What A Day.

Isaiah was a trooper today!  We love the CDD and their amazing staff.  This morning we checked in at 7:30 and the front desk staff greeted us with a "Good morning Isaiah!" before I had to tell them our name.  They went over our schedule for the day and we waited on the psychologist who was doing the IQ testing.

Isaiah did really well with the IQ testing.  While I didn't really think he had any intellectual disability, I had still been completely stressed out this week waiting for the testing to be done.  Isaiah scored right in the normal range which means there are no cognitive delays!  She also scored his social skills which dramatically improved since December.  In December his social skills were that of an average 4 month old.  Today he was scored at an average 17 month old level so he is completely caught up socially :)

Later in the day he met with his neurodevelopment pediatrician who did an exam and talked about what's been going on.  Isaiah was born with an ear pit, and since children with ear pits are at a high risk for kidney problems she wants him to have an ultrasound done to check on his.  She also said that because of a few of his 'oddities' she thinks he may have a chromosomal abnormality, so we are going to have chromosomal testing done on him.  So as soon as she calls and sweet talks our insurance to try and get it covered we will set up an appointment to have the ultrasound and testing done in the next few weeks.  (have I ever mentioned how much I hate dealing with insurance?  Because I really hate dealing with insurance).

Next we met up with the nutritionalist who wants us to set up a swallow study to check on his frequent choking.  He's getting MUCH better with chewing and swallowing food, but he is still choking way too much.  I really believe it's just immaturity with his eating skills, but I will speak to his feeding therapist when we meet with her next to see what she thinks.

We finished the day with the Physical Therapist, Speech Therapist, and Occupational Therapist.  I was a little disappointed with what they had to say.  I was really expecting month to month progress, but in the past 4 months he made about a months worth of progress in speech and gross motor skills, and no progress with fine motor skills.  Despite the numbers, he has made great improvements, but we will be increasing his physical therapy, and adding speech and OT.

I'm pretty nervous about the kidney and chromosomal testing, and am feeling a little blindsided by it...but it's starting to sink in, and we will just keep moving forward as always.

Getting there.

Slowly.  But he's making progress.

Speech/Language:  He is pretty much only saying Mama and Dada.  He occasionally says a 'hi' noise when he is playing with a phone, and he used to say fish, but hasn't said it in months.  I have noticed he has trouble saying Dada after saying Mama and vice versa.  If he is saying Mama and we ask him to say Dada, he continues to try and make the ma noise before finally getting the da out.  He sees the speech pathologist next week at the CDD so I'm going to bring that up.  I know it seems like a small thing, but with the feeding troubles combined with speech delays a few things were brought up in the past that make it more worrisome for me (mainly speech apraxia)

He is however doing really well with sign language.  He has a couple signs he uses regularly throughout the day (milk and more) and one we see occasionally (all done...but it doesn't look all that much like the actual sign for all done).  We are working on a few that will be helpful in knowing what he wants (eat, sleep, book, bath).

Physical:  Isaiah is cruising along the furniture now!  The goal for his 18 month review is to be standing independently (not holding onto anything) and while I'm not sure we will get there in a month, he will be there soon!

Cognitive:  Isaiah's cognitive testing has been moved up to next week so I'll be able to update more after that, but he's doing some really great things!  He started blowing kisses occasionally, he waves bye-bye pretty much every time we ask, and he seems to be understanding us, and following very simple directions.

Feeding:  Eating well, transitioned to a sippy cup and gaining weight!  The 3 week intensive therapy is off the table for now.  He goes back to see his feeding therapist in May and I'm thinking we will start going less frequently after that appointment :)

Tuesday is his testing and evaluations.  My prediction is that he is still about 6-8 months delayed...But making month to month progress is really all I wanted :)

More of the same

Not a whole lot of new stuff going on with little man.  No new words, but he's 'talking' a lot.  Still not cruising but he's a professional puller-upper now :)  Crawling fast as lightning, and happy as ever.  Isaiah is now over 16 months!  Wow.  We did have a weight check earlier this month and he had gained really well.

Coming up...after a long break due to appointment conflicts and early access spring break Isaiah has his physical therapist and teacher coming tomorrow.  Next week he has physical therapy (not sure about his teacher coming as well or not) and another weight check.  Later in the month he has his second set of evaluations at the CDD.  Keep little man in your thoughts April 23rd.  This will be another LONG day for him (last time we were at the hospital 7 hours which was just too much for him! And me!), and we have a lot resting on this appointment.  His neuropsychology pediatrician will decide if she wants him to do the cystic fibrosis testing (personally I think he has about a 0% chance of having CF...but we will see what she says since I don't actually have a MD ;), and if he needs brain scans done.  Last time we were there he was 13.5 months with the head size of a 4-5 month old, so if we still haven't seen good growth he will be doing the scans, which will be hard on all of us.  Finally, this appointment will decide if he needs cognitive testing done.  Doing an IQ test on a baby just sounds horrible and long, so I just don't want him to have to go through more than absolutely necessary.  He will also meet with the CDD team for a review (OT, PT, speech, nutrition, dental, social services).  They tell me follow up evaluations are a bit quicker so hopefully it's just a few hours this time.  Honestly though, if I have to spend a day at the hospital the CDD is the place to be!  Free parking, all you can drink coffee and they even feed us :).  Plus there are plenty of things to keep Isaiah occupied.

Overall, I'm really optimistic about this next round of evals.  He's doing awesome!

Isaiah's Stats

I haven't posted this in awhile...and boy has he changed since then!

Physical:  Isaiah is a crawling pro, and a pulling up champ now.  He's starting to show interest in cruising, but he's still working on the strength and coordination for that.  But for the first time I can say that it wouldn't be surprising to me if he started steps at 18 months!  Our IFSP goal is to get him standing solo by then, and he's not yet doing that, but I think once he does, taking steps will follow quickly.

Speech:  Not a lot of changes here I guess.  His word count is at 3-4.  Technically he has said 4 meaningful words, but one he hasn't said in awhile so I'm not sure it 'counts' anymore.  He was saying 'fish' a lot but since learning how to crawl, he's less interested in sitting and playing with toys, and more interested in moving around, and pulling up to get things he isn't supposed to play with ;)  But he is regularly saying 'dada', 'hi' and my personal favorite...'mama'.

Feeding:  Isaiah just knocked his feeding therapist off her socks yesterday :)  Our 3 hour session only lasted a hour in a half since he ate perfectly.  He hasn't choked in probably over a month, and he no longer gags either.  He has figured out how to chew, and work food to the back of his mouth too.  We go back to his regular pediatrician next week for a weight check, and so long as he has made good gains we will talk about starting whole milk :)  We are still doing the calorie boosters, but at his last weight check he was back up to his pre surgery weight, and I'm certain he has gained more since then.

Cognitive:  The social worker that suggested he may be mentally retarded can shove it.  He's smart.  He's a late bloomer, but he's smart.  He is doing really well with sign language, and seems to understand more and more of what we say, and while he doesn't have the words yet, he communicates appropriately.  I'm pretty positive that when he has his next set of evaluations, he will be back in the normal range for cognitive skills.  I actually think he only scored low at his 12 month evaluations because he was physically not able to do some of the things they expect kids that age to do.

Socially:  At 12 months, he was evaluated at a 4 month level.  He was smiley and happy, made eye contact and all, but he scored low because he wasn't holding 'conversations' (so when we talked to him, he wasn't cooing or babbling back to us) and he wasn't playing social games or interested in what his big brothers were doing.  Now, just 3.5 months later he is doing everything that he should have been doing at 12 months.  So exciting for us!

Other:  We are still working on Isaiah's jealousy issues.  Things haven't changed much with this.  He still gets upset when other people touch me, or get too close, and he has fits when big brothers sit with me.  We are still just ignoring it.  Eli was the same way, so it's nothing I'm too worried about.



And an update on the big bros:

Noah is awesome.  He just tested for his orange belt in Taekwondo and did awesome.  We unfortunately found out he didn't get a spot for preschool this fall.  We were on the wait list, and they had an opening for us at the Iowa City location, but that's just too far to drive for us. We were only going to have him go 1-2 days a week, just to get used to being away from home before starting all day Kindergarten, so we will look into summer day camps for him to do right before Kindergarten.  He's learning everything he would learn in preschool at home, so I'm not worried about that, but he's a sweet soul, and I just worry about him having a hard time going from staying home with mommy all day everyday, to being at school with 20 other kids all day.

Eli is still a spitfire.  He keeps us on our toes and we love it!  Not much new going on with him, he's definitely a little boy, rather than a toddler anymore.  He's talking very well, and it's so fun to watch him and Noah play together.  He's wanting to join Noah in Taekwondo class, and he can as soon as he's ready (aka listening better), so I'm hoping this summer we can get him involved.

That's about it!  We're all just sitting around waiting on spring to arrive ;)  It's hard to go outside in the snow and play when I have all the littles here during the day, so we've been housebound most days and are all getting spring fever!

3 months in

3 months ago we met with Isaiah's service coordinator for his initial evaluation.  At the time his social skills were at a 4 month level, his motor skills were at a 6 month level, and his speech skills were at a 6 month level.  He was barely army crawling (he'd go a few feet and thats it!) not bearing much weight on his legs, he could babble the DA and BA sounds and that was about it!  Today I have no idea what his age levels are at.  I'd guess he's an average 9-10 month old but what I know for certain is he's made more progress than I imagined.  He's crawling, pulling up, babbling like a boss, he has 4 words and socially I'd say he's caught up!  We are at the halfway point through our IFSP timeline for the first set of goals and I'm hopeful we will meet most, if not all of them!

Progressing again!

After a few weeks without a whole lot of new going on, Isaiah has hit another spurt!  In the past week he has...

     -Said "mama" in a meaningful way!  I've been waiting a heck of a long time to hear him call me Mama and it's finally happened :)  That puts our meaningful word list at *Dada, Fish (though he hasn't said this one in a few weeks), Hi, and Mama!
     -Started crawling on hands and knees nearly 100% of the time!  He's been able to do this for maybe a month, but only a few feet at a time before getting back on the belly to crawl.  But now he's a crawling pro.
     -PULLING UP!  So exciting!
     -Crawling up stairs on his own!  Needless to say, we now need to keep the gate at the stairs closed at all times now!

I'm excited about his next round of evaluations to see how much progress has been made!  The goal is month to month progress (so in one month we want him to make one months progress...this would put him at a 12 month level when he is 18 months).  

General boring updates

Not a whole lot of new stuff going on with Isaiah.  I feel like right before 14 months Isaiah made huge progress over a few weeks, and now we're in a lull. Last week his teacher commented on how well his speech is.  He still has very few words (dada, fish, and hi) but he "talks" all the time, and his teacher noted how his babbling is starting to follow conversational patterns which is great!  He is now crawling on hands and knees about 75% of the time, when just last week I'd say he was belling crawling about 75% of the time, so that's also great.  It seems like at the moment he is working on perfecting the skills he acquired in the last month or two rather than working on new skills.  The physical therapist is having us work with him on the stairs (crawling up) in hopes that it will help build the strength he needs to get the hang of pulling up.

Isaiah also went in for a weight check on Friday and gained a whopping 1lb 5oz in just a month.  Obviously the calorie boosting table foods is going well for him!  We were concerned because the feeding, nutrition, and occupational therapists want him eating more formula and pureed food than table food, but Isaiah has his own plans and has been scarfing table foods and not eating much of anything else.  Of course, this is the goal for him, but calorie-wise he gets more from formula and pureed foods than table food, and at the moment calories is what he needs.  But now that he is back up to his 9 month weight, they will just monitor his weight gain closely in the next few months and as long as he is growing we will let him continue on as he wants to with the table food.  He also hasn't choked in a week or two which is awesome and huge process from just a few months ago when he was choking and gagging multiple times at each meal.  YAY!  So unless he has another food strike before then, we will take him back in to his regular pediatrician in a month to have him weighed.

Next week he has his teacher coming, physical therapy and we have another whole team IFSP meeting with the early access team to add more services to his IFSP (we just need to formally add nutritional services and discuss the CDD evaluations and recommendations).

In other news...I have a 3 year old in the house again :)  Eli celebrated his birthday on Saturday and we had a blast at his construction themed party.

I's Stats

Here's what's new this week (14m 1w)


Physical
----not much new this week.  Isaiah is still working on pulling up.  He is making progress but still having trouble figuring the footing out.  He'll get there.  He is also still mostly belly crawling, but getting up on his hands and knees to crawl more and more.  We're getting there!

Speech
---- Our meaningful word count is at 3!  This is Isaiah's favorite toy, and the reason for Isaiah's latest new word "fish" (shhhh).  He has also FINALLY made a few of the mama noises, but it still doesn't seem to mean much.  Isaiah is also doing better with 'conversations'.  He seems to know exactly what he's saying, and isn't shy about saying it :)  His teacher came today and I teared up more than once while she was here from overwhelming pride in all he has accomplished this month!

Cognitive
-----nothing knew here, just more and more of those pretend phone conversations which is awesome.  His teacher was very impressed today!  The fact that she seemed just as proud of him as I was made me feel amazing!  We are very lucky to have a team that all seem to love him and genuinely care about his success.  I can't say I'm all that surprised though...To know Isaiah is to love him.

Feeding
----Just more of the same here too.  No major advancements since last week, but no setbacks either.  We met with the new OT (occupational therapist) this morning and after talking we both decided that now is just not the time to start.  While I am eager to get him every resource he needs as soon as we can, right now we need him to get calories, and the rest will have to wait until we are certain he is getting proper nutrition.  She is going to come back in a month or two and see how he is doing, and if he has started gaining weight again, we might talk about starting some regular OT then, or this might just be something we need to wait on for a bit.  


Other:  Isaiah is a bit of a jealous guy.  He has eyes for his momma and isn't too willing to share her affection ;)  Temper tantrums, screeching, hitting and pushing result when anyone gets too close to his most prized possession, and it's getting a bit out of control so we are going to focus on getting those behaviors taken care of.  I'm hoping this is a quick correction because... well...the kid is freaking adorable and it's just sooo hard to resist that charm.  The general consensus is that we are to ignore him until he stops the negative behaviors, and then engage him since telling him no only results in delightful giggles.  In theory it sounds easy, but the kid knows how to press buttons and pull heartstrings, so I know it will be hard to leave the little dude hanging when he seeks my undivided attention.

I's Stats

Here's what's new this week. (14 months)

Physical.
---Almost pulling up!  WHAAA????  I guess he decided to prove me wrong after my last post.  He can't quite figure out what to do with his feet but I'm certain he will figure it out soon!  Much sooner than I would have guessed even just a few days ago.

Speech
----Isaiah has another new word!  He says "hi" (sounds like a soft ha when he says it) when he holds my phone to his ears...which leads us to...

Cognitive
----Pretend play!  He now holds the phone up to the ear as if he is talking on it.  I know it sounds like a simple thing, but this is a big deal!
----Ball play.  While he has trouble getting a ball to actually roll, Isaiah will 'roll' a ball back and forth to me when we play.  He will also now look at a ball if I ask "where is the ball".


Exciting stuff :)  We're having an easy week this week.  I take Noah and Eli to the dentist, but that's it for appointments.  Next week we have his teacher coming, and we are meeting the new occupational therapist.

Who is this kid?

Isaiah has made so much progress since we started early intervention.  It's just amazing seeing all the progress being made.  Just this week Isaiah has...

Started crawling on hands and knees with increased frequency.
-----He has been crawling off the belly for a couple weeks but it was rare to see, and usually just for a few 'steps'.  While he still crawls on the belly (army crawls) most of the time, we are seeing the hands and knees crawling several times a day, for a few feet at a time.  Amazing!

Said his first word!
-----He has been making the dada noise for a few months, but never in a meaningful way.  Yesterday Isaiah looked at Brandon and said "dada" while reaching out with a toy for Brandon to take.  He did this several times in a row, and then again all evening when Brandon was home from work.  Since Isaiah is at a 7-8 month overall level, we were not expecting him to say meaningful words until he reached a 10-12 month level.  So we are obviously thrilled :)  In addition to his first word, he is just babbling and jabbering so much more, and having more "conversations" with us.

EATING
-----While he suddenly improved with his chewing/swallowing skills right around Christmas he was still not eating much, and exhibiting some of the negative behaviors he has had since we started trying to feed him solids.  Now he is eating table foods really well, and doing better with opening his mouth for a spoon, and eating more pureed foods (same flavors and textures, but a larger quantity at once).  This morning he had 6oz of greek yogurt that was mixed with 1oz of a sweet potato/carrot puree and a tablespoon on whipping cream (for extra calories).  This is a huge difference from even a week ago when breakfast would be 2-3oz, and 4oz on a really good day.  Yesterday he had half of a PB&J sandwich for lunch and about a quarter cup of mac and cheese  for dinner (he also had a few bites of meatloaf and seemed to really like it, but he thought feeding that to Louie was much more fun than eating it).  I have also seen a bit of a decrease in the negative behaviors and more willingness to take bites of non preferred foods.  He still needs some work, but I'm starting to think the 3 week food therapy thing won't be needed if he continues to progress like he has been!

Trying really hard to pull up
-----I highly doubt he will be able to pull up in the coming weeks as he still needs to gain the muscle strength for it, but he is trying so hard!  He gets himself onto his knees and tries so hard to get up.  He has never showed any interest on getting up on his feet to stand before, so even if he doesn't get up to stand soon, just trying and showing interest is progress!  And while I would be shocked if he pulled up soon, he does have a tendency to surprise us ;)

That's all I can think of for now.  We still haven't gotten Isaiah's test results back, but some of the tests they did can take up to 10 days to get so hopefully we know by the end of the week but right now I'm just assuming no news is good news.

CDD evaluations

Yesterday was Isaiah's "big evaluation" as the CDD.  Overall things went fairly well.  We were at the hospital going from appointment to appointment for 7 hours so I could probably write a ten page summery about what happened and what we learned, but I'm going to try and keep this update a little shorter ;)

When we arrived at the UIHC CDD we first met with a nurse who checked Isaiah's vitals and did measurements and weight checks.  Isaiah weighed in at 18lbs 11oz which is down about a pound from his 12 month check up.  He was 27 3/4 inches (peanut!) and his vitals were good.

Next we met the social worker who went over what all we were going to be doing for the day, the  costs, support systems in place for us and gave us all sorts of information on the services Isaiah will get when he gets on title 19 for disability (for being delayed in multiple areas).  We were really pleased to hear some of the resources that will be available to us.  She also went over all of his upcoming appointments and pretty much just made sure that Brandon and I felt okay with things and had enough family/friend support in the area to help out when we need.  We were also introduced to another social worker (who I kid you not looked like Taylor Swift's clone) who was assigned to follow us around for the day to observe and help explain everything to us, help us with questions, and pretty much just help us care for Isaiah during the appointments and breaks.  I was incredibly grateful for her help, and Isaiah really liked her too.

After this meeting we were taken to meet a nutritionalist who went over his daily schedule and calculated is caloric intake, and went over what his caloric intake should be then offered lots of tips and things we needed to do to help him with weight gain.

Next up we had a dental exam for Isaiah.  He was not happy about it!

We then had a bit of a break while we waited for the therapists.  During this time the social worked and I talked about the private therapy (he will be going to Children's Therapy Center in North Liberty) and how to apply for grants to help cover the cost before we can get disability coverage (there is a year long wait for therapy coverage with title 19, but he needs to start before then so we will have to cover the cost).  It sounds complicated, but she will be able to help us with all the grant application stuff when we get started.

We then got to meet the PT, OT and ST (physical, occupational, and speech therapists).  They all did a group evaluation so Isaiah got to get down and play while they all played and watched.  The OT was pretty pleased and put him at a 12 month level.  So not delayed (he's 13.5 months).  He is great with his hands and the only reason for OT would be for feeding, and we already have OT with early access for that, plus a feeding therapist so there is no reason for any more OT.  YAY.  The physical therapist evaluated him at 7-8 months.  One month ago he was evaluated at a 6-7 month level, so in one month he has made one month progress which is awesome!  While it's way to early to make any conclusions from that, it does mean that so far the gap between age and skill level has not increased, so I was really pleased with that.  The speech therapist put him all over the place, averaging at 8 months (also a month improved) but she did say he had some scattered skills that were anywhere from 6-12 months.  He still has no words, but he has made a ton of progress in just the last few months so hearing that he has a few skills in the 10-12 month range was really good to hear.    She also said that she does not believe we are dealing with a cognitive delay.  Some kids are delayed in other skills because their thinking skills are behind, but she doesn't think Isaiah has any intellectual disability.  Also REALLY GOOD NEWS!  Isaiah is scheduled for cognitive testing in May, and the therapists want us to go ahead and keep that appointment for now, just because the wait list for that testing is 6+ months, but she thinks at his follow up testing we will be able to cancel that appointment :)

We then met with a neuropsychology pediatrician.  She did a physical and went over his medical history.  She was concerned with his size (he is the weight and length of an average 7 month old).  She thought that he was small even for having small relatives and would expect him to be similar in size to his brothers.  His head size is also small.  When we go back for the next evaluation she will have brain scans done if she isn't happy with head growth.  Definitely keep him in your prayers that he will grow well in the next 4 months!  She said that his muscle tone was good, but commented about a few things that were 'off' and decided that he should have some blood work done to test for some muscular disorders.  So, when she was done we went to the main hospital to get his blood taken (not fun for any of us!) and we were finally DONE for the day!

The plan.  In addition to his services he is already getting with early access we are going to start private physical therapy.  We are going to wait on additional speech until the next evaluation since she saw a lot of emerging skills.   The speech therapist said that she thinks when we come back for the next evaluation that he will have made a lot of progress with what we are already doing.  If not, we will talk about private therapy for speech as well.  We will go back in April for another evaluation and see how he has progressed!  Please keep my lil guy in your prayers.  We are hoping his blood work all comes back normal, and that his growth will be good so no head scans will need to be done.  So for now...he continues with early access (physical therapy, his teacher working with him, occupational therapy for food issues, our nutritionalist), feeding therapy at the CDD and we will start private physical therapy.


Feeding therapy update:   Isaiah also had another feeding therapy session today.  These sessions are 3 hours with a lot of play in-between working on his eating skills and working through some negative behaviors.  Today was better than the last time (I managed not to cry), but because of his weight loss and some of the behaviors he still has his therapist recommended we do a 3 week intense therapy thing.  When we do this we will be at the CDD for the first half of the day (3 hour sessions) monday-friday for 3 weeks to really work on getting him eating well.  We can only do this if our insurance company can cover it (out of pocket it's $9,000!!!!!).  We got on the wait list for that, but the wait is really really long, so unless there are lots of cancelations we are looking at summer for that.  His therapist said that if our insurance agrees to cover today's session and the next they will likely cover that as well.  We go back for his next session in April (with Skype sessions in between as needed) so if he does really well we can always get off the wait list for the 3 week thing.

So...that's all for this week so far!  We will Skype with his early access nutritionalist tomorrow morning, and he has his teacher coming Friday.  Then we will have a break or the weekend!  Next week will be pretty busy for him as well.  But after that, we will get in a routine of 1-2 therapy sessions per week, and when we start private therapy we will be on a really routine schedule of 2x (one in home, one at the center) per week.

I also have to say how awesome the big brothers are!  They have been pulled out of bed hours before they are used to getting up and dragged out in the cold to be dropped of before Isaiah's appointments.  They haven't complained once :)