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.