Stop it Spring!

A couple days after the Spring Blizzard, we got six inches of heavy wet snow.  Under that heavy wet snow is a layer of gooey mud from the melted blizzard snow so my main vehicle is now stuck in the mud :|  Fun times during Mud Season!

Miss Iz has been working on some new sensory strategies with her OT and has been doing a great job.  She keeps Miss J on her toes as things will work great for a while and then Iz gets desensitized to them and they have to start over to find something else.  But she is enjoying the new activities, especially the kids yoga, and shows off the new things she is learning at home :)

The Busy Little B is making tons of progress with his OT but we expect to see some regression soon because Miss A is leaving :(  She is wonderful and he has made so much progress with her but she was only part time and she found a full time position.  As much as I want to keep her, she can't pass up full time :p  I wish the rehab center had a full time spot for her so she could stay :(  B doesn't always do well with change so it might be a hard transition for him.  We had to switch speech therapists recently and he won't say a word to the new therapist.  He will nod or shake his head and smile at her but that's it.  Hopefully he adjusts soon and starts talking to her :p  So it will not surprise anyone if he does the bare minimum at OT with a new therapist until he adjusts.

The Super Kid is also making good progress on his goals in OT but he's been recertified for another session because he's not met the goals and they adjusted a few.  One of the main things we started for was handwriting and it has improved so much!  He's a leftie with hand strength issues plus learning disabilities that effect handwriting so the fact that his print is so clear now is fantastic.  He's still struggling with some reversals and spacing issues and the quality of his writing is still going downhill after some time writing but its progress!  He's quite proud of how nice he can make it look when he first starts writing :)  Those hand strengthening exercises will help with how long he can write, too.

Little W will be doing some testing soon as he ages out of the Birth to Three program to see if the school system will pick up his services.  OT is so hard to get through the school i doubt they will continue that but maybe speech.  He's improved so much but he's still hard to understand--his articulation isn't the best :p  I may need to get him evaluated at the rehab center to continue his services privately if he doesn't qualify to transition to the school system's services.

Finally! we are well enough again!

I had considered keeping Miss Iz home an extra day to rest since she was the sickest of the kids but you would think I had announced the End of the World by the way she reacted!  That kid wanted to go to school SO BAD.  She was going to hit her 24 hour fever free within an hour of school started so we went ahead and went in--her teacher said a lot of the kids  had been out that week so I guess whatever virus was hitting everyone hard.

With both the middle kids better and off to school, there was nothing standing in W's way of finally having a therapy session! Miss M came to do OT with him and he was so very happy one of his "friends" finally came to see him :)  He was a little uncooperative but I think that had more to do with the whole week's schedule being thrown off.  Miss M was still pleased with his work, though, so it was a good session.

We went to pick Miss Iz up from school and came home for a quick snack before W's annual meeting for early intervention.  All his therapists and his coordinator came plus they introduced Miss S, the educator who will also start coming to see W once a week to work on his attention span.  We talked about his progress and defined the goals for the next six months to a year.  So with the new Educator added in, he will get 30 minute sessions four days a week.  Busy kid :p

After B came home from school, we had to pack everyone up and head for S's school to have a 504 meeting--he already has an IEP that pretty much covers everything  but they wanted to start a 504 as well so sure, why not, I'll bring all my kids to your school and set them loose on your conference room!

Then it was off home again for dinner and then everyone back to S's school for the band concert!  I have to admit, that was kind of a horrible experience.  Not the band!  I thought they did rather well :)  But I had three kids at bedtime, trying to sit in uncomfortable bleachers listening to loud instruments for an hour.  They were restless and tired and unhappy and *sigh* we get to do it all over again in a few weeks for the orchestra concert :\

Poor Kiddo

Poor Iz, she's just been having a rough month that is turning into a rough two months!  One of the highlights of her week is her Thursday morning early intervention playgroup.  She loves going, even if she doesn't like interacting with the other kids (she's getting better, though.  Last year she didn't make a sound, this year she's been talking to me and recently talking a little to some of the other adults.  And instead of leaving the station immediately when another kid approaches, she will stay some of the time and play near another kid.  No interacting, though, if they try, she goes :p).  Beginning of March, she was too sick to go.  The next week there was no group.  Then following week she was sick again and couldn't go.  She was overjoyed to go today!  And then the next two weeks, no group because of Easter and spring break.  She is going to be so mad at me the next two weeks for not taking her :p

School is almost back

I think all of us are feeling a little anxiety about school starting back up.  S is suffering from is "normal" anxiety but I think once he gets back and is reminded that now he gets to talk to his friends, he'll be feeling good about his return.  I had talked with his new teacher on the phone and met her in person at the Open House last week and she seems not only nice but also committed to helping S be successful.  She had consulted with his third grade teacher to find out some of the strategies that helped him last year and she had already set them up :)  This teacher was handpicked by last year's teacher and the rest of his IEP team so I am thinking we will have a good year.  He's not convinced, though!

B is very excited but I am a bundle of nerves.  Change is always hard for him and while I am hoping things go well, I am expecting some rough days (or weeks. maybe months). He and I went to his Open House together and he liked the teacher and aide and classroom but there were no other kids present when we were there and sometimes that really changes things for him.  Fingers crossed that the other students in his class are ones he will immediately declare his friends and want to hang out with every day :p

Izzy is so excited about the upcoming school year and she will NOT believe me that she isn't going to school.  She's still on the wait list and the Early Intervention playgroup she might be attending won't start for at least another month.  We need a salary raise so we can get a membership to the Y again so she can take a class or something :p I need to check out the local library and see if they have any programs running for her age group!

Brain Dump

• Izzy's neurology appointment was postponed due to a medical emergency for the doctor.  I hope whatever the emergency was, all is well.  So we go back in two weeks to see how she's doing.  I had planned on seeing neurology before she ran out of meds so I hadn't refilled it in case he wants to change what she's on but she is running out so S and I ran over to the children's hospital pharmacy today while we were up there for his podiatry appointment and got her new bottle. 
• S was referred to podiatry a while back because I was concerned about how his feet roll inwards--he wears out one side of his shoes completely while the other side looks barely used.  It took a long time to get an appointment but we got one about six weeks ago and the podiatrist wants S to wear custom inserts.  We went in today to get them and when the tech pulled them out of the package, they were so small :p  Somewhere along the way the shoe size was mixed up.  So they took a new set of casts and are sending the too-small inserts back and getting the correct size made.  We go back in a month to get the (hopefully) correct pair. 
• Izzy is still on the wait list for preschool.  We've been planning on her doing the weekly playgroup if she doesn't get in to continue getting support and working on social skills but we met with her EI worker earlier this week and they keep changing the program around and changing the criteria to qualify for group.  She is pretty sure Iz will still be able to get in but we won't know for sure until next month or maybe the month after.  Oy.
• We moved!  We are technically farther away from the hospital but its a straight shot up the highway so its actually quicker than before.  Plus I don't have to drive an extra almost two hours every appointment running kids in the wrong direction for babysitting.  Logistically, this will make things much easier for me :p  And with three kids needing shuttling to specialists and therapies nearly an hour away, two school aged kids with homework, my own homework, and all the other things that go with just normal life, anything that makes things easier is a very good thing ;)
• My cat has become even more protective of the kids lately.  He has taken to sleeping outside the boys' bedroom door and guarding it.
• I hate humidity.  Please go away
• Have a fantastic weekend, everyone!

She talks!

Izzy had Early Intervention today.  We were meeting in her old playgroup classroom, the informal one she went to before she was old enough to be a part of the structured "official" group.  I think Miss J and I were both expecting her to be very hesitant since she probably doesn't remember the room and new things make her so anxious but she did really well.  She spent some time hiding behind me and pretending Miss J wasn't there but eventually some of the toys caught her interest and she even went through several period of talking to Miss J!  We still had plenty of silence where she verbally shut down but even then she was still engaging Miss J, showing her things, making eye contact, gesturing for her to play, too.  Eye contact and engaging and talking?  That makes for a fantastic visit :D

A little good news :)

Izzy had her last speech session!  She has met all of her goals and is considered "age appropriate" :p  Her speech therapist would still work with her on a few things, particularly clarity when speaking in longer sentences, if insurance would continue to cover it but her eval scores are too good to get another session approved.  But that's okay--for now, her speech is so much better than it was and hopefully these months of early intervention will keep her speech development from going down the same path as her brothers (both of whom are still in speech through the school).  I guess that is one bonus of being the youngest of three--when her speech development was identical to her older brothers, I did not have to fight to get her evaluated and helped because the history was already there. 

She was also approved for preschool next year but there are not enough open spots so she's on the waitlist.  Her Early Intervention team has been putting the pressure on the preschool to get her in because of her social skills (which are pretty much zero.  She rarely will interact with the other kids, even though she looks forward to seeing them and talks about them all week) and the fact that her speech is nonexistent when she is with a group so they are hoping she lands a spot.  If she doesn't, there's a playgroup for older kids (3-4yos) so at the very least we will do that. 

Busy busy busy!

Things have been busy around here--lots and lots of driving for therapies and appointments!  But its a good busy because things have been holding pretty steady and we are just in the rhythm of getting to where we need to be :)

Izzy's speech therapy has been going so well since she started the seizure meds!  She has met several of her goals and we may be finished for now in another month or so :)

Early Intervention has been evaluating her to see what her transition out of EI will be like since she turns three in the fall just as the programs are starting back up.  They are thinking she does not need the full-on special education preschool the way B did but they also are not sure how she would do in a completely mainstream classroom by herself.  But they would really like to see her moving on to some sort of program to continue working on speech and emotional/social development.  Perhaps a regular classroom with an aide?  They are checking to see what's available and hopefully we will have a plan in the next few weeks!

B had his transitional IEP meeting so I could meet the staff at his new school.  He's going into a special education classroom with a goal of hopefully being able to attend specials with the mainstream students and then over the next few years build up his time mainstream until he is there most of the time.  We are anticipating a rough transition, though, as he doesn't do terribly well in new and unfamiliar places so it may be a while before they attempt mainstream specials.  Maybe he'll surprise us and be just fine switching schools!

Both B and S have had evaluations with the new neuropsych so now its just time to wait for results and to get a plan in place to move forward :)

And that's about it :p

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

She speaks!!

When we went to playgroup on Wednesday, I thought it was going to be a rough day because the first thing Iz did when we arrived was to hide behind me.  And then she laid on the floor and covered her eyes (in her mind, no one can see her if she covers her eyes).  She did eventually start to play a little but if anyone spoke to her, she would cover her eyes. 

She moved over to the play kitchen (one of her favorites) and started to play with me and she didn't leave when other kids came over!  She interacted with them a little bit but mostly played by herself but not leaving when they came over is pretty big for her :p 

The EI teacher in charge of her playgroup is concerned by her lack of social skills and the big regression we've seen as far as speech and anxiety and is recommending Iz get another full evaluation for services to see if she qualifies to move into the next program to get extra support to help her reach her social/emotional developmental milestones.  She's not sure its severe enough to get her into B's program, which is a special education preschool program, but she may qualify to move into their "regular" early childhood education program with extra support.  We talked a bit about Iz's unknown neurological issues and the teacher is thinking we should do the evaluations towards the end of the year to give neurology time to do their tests and try to figure out what's going on so we know if the neuro issues could be causing the social/emotional issues (Iz has also started having outbursts than can rival B.  This is around the age it started with B so there is some concern that she could have whatever B has--he's got an appointment with a neuropsych coming up so we can try to figure it out!  Iz could just me mimicking his behavior but who knows :\).  So we'll see what happens.

At one point, all of the students and parents were on one side of the room and Iz led me over to the other side to play with her and she started talking to me--last week, not one word out of her the entire time (hour and a half) so her talking to me while we were in the room was great :)  Her favorite little girl came over and Iz talked a little to her as well.  She talked a little on and off the rest of the session so that was nice!  And she sort of participated in some of the songs/games during circle time :p

Yesterday was speech therapy and she opened up there and spoke to Miss Emily, too!  We are apparently on a roll this week :D   The first word she said to Emily was an accident, I think.  Up to that point, she'd been pointing or grunting or mouthing words with no sound.  But a word popped out and it seemed to open the floodgates because a few minutes later, after trying out single words here and there, she was talking up a storm.  Emily is impressed with her grammar LOL  She may not be able to say the words clearly but she knows how to put them together ;)

Her therapist (who we saw Tuesday) is going to try to come to a speech session so she and Emily (and I) can coordinate to try and get Iz over this anxiety that is keeping her from speaking.  She couldn't make it yesterday because she couldn't rearrange her schedule but she's trying to shuffle some things around to make it next week.  If she can't, we'll try to move one speech session to a time all of us can do and then go back to our normal time.

We've got several things coming up!  In a little less than two weeks we have Iz's MRI, B's neuropsych appointment, Mr. Piper is coming for a week, we have another genetics appointment, and then in a little over a month we have a 24-hour EEG.  I was told the EEG was an overnight but when they called to schedule they said nope, full 24-hours.  Yikes.  Luckily, we were able to schedule it during a time Mr. Piper will be home (not til May, though) because I have to have a second adult there.  I wish I had thought to ask some more questions :p  Will she be tethered to a machine in her room?  Because keeping a toddler in a hospital room is not fun.  Or is there some sort of portable machine so she can walk around the hospital and go to the playroom?  Guess we'll find out when we get there in May!

Hello, Wednesday!

Wednesday is Izzy's Early Intervention Playgroup. She loves Playgroup.  All week she talks about Playgroup.  She asks every morning if she is going to "skool" today (her playgroup is held in the same building as B's preschool, just a few doors down from his classroom).  She talks about the people she is going to see, particularly another little girl just a few months younger, Emma.  Izzy loves Emma about as much as she loves playgroup :)  However, once we arrive?  Iz wants nothing to do with anyone.  She won't talk to anyone, won't look at anyone, if someone (child or adult) tries to join her in play, she walks away and does something else.

*sigh*

She has little moments of sociability, though, so at least we are moving in the right direction :)  She voluntarily engaged one of the teachers in some pretend play (she poured her a pretend glass of milk and then left the play area).  She interacted with Emma and another little boy briefly over some toys (and then walked away).  She danced a little bit during the song at circle time (normally she stands or sits and just stares).  And she even did a few of the hand movements for one of the songs (again, typically she just stares). 

Once we left the school and were in the parking lot, she chattered up a storm and talked about the fun she had had LOL  One of the teachers today asked me if she was upset because she looked mad most of the time and I said, nope, that's just her default face lately. 

Field Trip!

A little while back, Iz's EI  group had a field trip to a local sporting goods store.  They had a tour guide who told some stories of some of the animals on display and let them feed the fish in the pond.  We have been to this store many many times--the kids' dad kinda loves this place :p  And their favorite part is the giant aquariums :)  Normally B can't go to playgroup but since it was a field trip, siblings not in school were welcome to come so off we went!

B was very vocal about wanting his picture taken with the elephant so he gave me a big ole cheesy grin:

Iz decided she wanted a "pitter, mama!" but she would not hold still so you get slightly blurry Iz :p

 

Later that night, Iz found some new glasses to wear and she had a blast trying to figure out how to make them stay on her face LOL  (They belong to Mr. Potato Head).  She kept saying she had glasses like me and S :p  She was also in a mood to show off her zipper--it is looking really good!  She seems to have lost most of the sensitivity around it and doesn't mind having it touched most of the time.  She is still very hesitant to let doctors and stethoscopes near the scar but normal everyday stuff doesn't seem to bother her anymore :)

Library Storytime

S has always loved story time--even when he was too little to really sit through it, he loved to go.  The Story time Lady at our local library was wonderfully patient with him and never got mad when he would dance around or talk or come up to point at the pictures.  We worked on library manners and over time, he got it down and is now the model Story time attendee.

We don't really do story time during the school year--the evening family session is smack dab in the middle of dinner/bath/story/bedtime routines and we try not to mess those routines up.  Occasionally my Mom would drop by and take him (he can handle having his routine disrupted to a certain extent) but we typically reserve story time for the summers when we can go during the day.  I must admit, part of that reluctance to go in the evening has been B's reaction to story time.

He HATED it.  Asking him to sit in the circle was torture to him--he screamed and cried and would then run around screeching and disrupting the entire group.  We tried several times and B's story time always ended with us leaving the group after just a few minutes to read quietly in another part of the library.  He did fine in the one-on-one setting but could not handle the group.  We would join back in for the crafts but B didn't like the feel of the supplies, whether it was paint or construction paper or whatever.  S would use his craft supplies to make something instead :p  Between B's screaming and his unwillingness to participate, we stopped going with him.  I would take S and he would join the circle and then I would go do something elsewhere in the library with B.

When B started playgroup with Early Intervention, we pretty much had the same response--as soon as you asked him to get in the circle, the screaming would start.  They sorta expect it there, though, so week after week, I or one of the ladies would hold a screaming B and try to get him to take an interest and participate in circle time.  He never did.

However, his year of preschool did what EI could not--he will sit quietly in group circle time!  It was part of his daily routine at school and while they did have days where he reverted back to old behaviors, he is fairly cooperative now.  On Wednesday when we went to the Summer Reading Program, B was quiet and listened.   YAY!!!!!  So far only S is signed up but I may just need to sign B up for his age group and keep his circle time skills up to date ;-)

Before we could leave, we had to do puzzles :p  You can't have a library trip without puzzles!

Fun times at the library

IEP, round one

The end of the school year is getting close and around here that means IEP time--both boys have their IEP reviews in March.  B was first up and one lovely thing about an IEP meeting at a preschool is the fact that there are toys and books everywhere so there was plenty to keep Izzy occupied while we talked :)

I think one of the more difficult things about putting together a plan for B is the fact that we don't know exactly what we are working with.  His evaluations through Early Intervention and the preschool show there is something going on but those evals don't give a diagnosis.  He has some delays but we need the pediatrician involved to get diagnostic to know exactly what is going on.  Things like high-functioning autism and OCD have been put on the table but without those evaluations, no one knows for sure.  We know that he is speech delayed but has been improving with therapy (although he is still too far behind).  We know that he is incredibly rigid and inflexible and that this interferes with his social development--he has a clear idea in his head how things should go and he does not handle deviations from that.  We know that he has little rituals he MUST do but we don't always understand the rules for those rituals and he seems confused that we don't understand.  Getting the proper evaluations is a fight every step of the way--so far, none of the local pediatricians have seen any cause for concern.  Even the one who thinks he is autistic :\  They want to wait and see if he grows out of these behaviors but the preschool teacher and social worker are in agreement that the sooner he gets specialized help, the better.  A diagnosis gives them a direction to move in.

At this point, my next move is to move him to the pediatricians at the Children's Hospital.  Its a drive but from all that I've read and heard, they can get him the evaluations he needs to find out what is going on with him.  So we are working on that and hopefully he will have a new patient appointment soon!  And maybe, just maybe, I will finally have a pediatrician I can work with instead of constantly fight against :p

As part of the Early Intervention program, Izzy is in a playgroup this winter with some other younger kids who are also not quite old enough for the more formal playgroup.  Since the first year of her life was so isolated because of her heart, it is nice that she can get some small group exposure to other kids.  She mostly watches the others for a while and then goes and does her own thing but every so often she will interact with another kid so that is nice to see!  Today, she even completed some fine motor skills her evaluator has been trying to get her to do for many months--she and I worked on them at home, too, but until today she really didn't do it in any deliberate manner and would only occasionally perform the skills more on accident than anything.  But today, she was a rockstar and did it with purpose and five different times :)  Go, Izzy!

Of course, a hard morning of playing and then eating bunches of lunch means a well-earned nap on the sofa :p

 

She made herself all comfy and no way am I moving a sleeping toddler ;)  The boys have these black bean bag chairs and they are perfect to slide up against the sofa when a kid falls asleep there--if they roll off, they hit the bean bag chair and don't get hurt.  I don't think I have to worry about her today, though--she has been in the exact same position for nearly two hours now.......