Poor Peanut!

 

Peanut Needs Surgery GoFundMe!

The kids dog needs hip surgery :(  Between her ER bills and the surgery itself, we are up to around $3500 in vet bills--if you can spare a few dollars to help, we would really appreciate it! 

Peanut is a sweetheart and has watched me do deep pressure and distraction techniques when someone has an anxiety attack or a meltdown and has taught herself how to do her own version of those skills :)  Even injured, she continues to work when the kids need her--it was pointed out to me that she is acting as a service dog and a little research shows that with a little more training, she can serve as Izzy's Psychiatric Service Dog.  Once she is recovered from her surgery, that is Peanut's next big project--she is already mostly there!

I really am terrible at updates.....

I do really well for a while and then.....it all falls apart.  We have had a couple of big moves since the last time, some new diagnoses, some new doctors and specialists and months of shelter in place! 

We did the crisis schooling from home thing from March until end of May and let's just say that wasn't really any fun for any of us.....I think the Super Kid had the easiest time of it though--once he got focused and on track, he just plowed through the work and said it was way easier than sitting in classes and trying to pay attention.  His ADHD brain and its distractibility seemed to respond well to having a goal and being able to just work at his pace until it was done.  He discovered that instead of doing a little of each class daily, he did better and remembered more if he just did one class at a time and did the week's worth of work in one day.  I noticed his grades on assignments and tests actually went up!  His school had switched to a pass/fail system but his report card still listed the regular letter/number grades.  However, learning some of the new material is subjects he has a LD in was harder with the online stuff.  If they had a hybrid class where he could go in when he needed some extra help but did everything else online at his pace, it would be perfect for him :p

W often had his teachers laughing.  He was in the sped preschool program again and he did not appreciate this online thing at all.  On many of his assignments I was submitting variations of "he watched the videos and showed his understanding to me but when it came time to do the assignment, he just growled and hid under the table".  His main teacher kept saying that that fit his personality so well that she could see and hear him doing it in her mind ;) 

The Busy Little B has had a struggle of things.  We ended up having to pull him from public school and homeschool him and well, there are more days where we make no progress than days where we do.  But I do talk often with his psych team and so once all the covid restrictions are over, we will move forward with trying to figure out how to help him and how to get him learning again!  We did attempt an intense outpatient therapy program last fall that was supposed to be one of the best in the area but they couldn't handle him either :\   He gets obsessive and shuts down and then gets aggressive but not with me.  There is something about me that keeps him much calmer, that helps him regain control over the obsessions' and compulsions, so his "team" basically decided he just needs to be with me alllllllllll the time until they can figure things out.  Not sustainable for the long term but its what's had to happen for months upon months now.

Iz has adjusted well to her latest school and I swear, those people are miracle workers.  In Jan 2019 she had been doing so well in homeschooling and therapy that we decided to say goodbye to homeschooling and try public school again and it was a disaster.  Oh, sure, there were some good things but overall? Disaster.  To the point where we were ready to homeschool again.  We moved again and let her try the school in our new area and it was night and day.  Sure, there are still issues, she's still in a self-contained classroom, she still needs aides and behavioral specialists and the occasional police visit or trip to the hospital when she couldn't be calmed, but even when those things happen, its not as bad/severe/traumatizing as the last school. 

Now we just have a long hot summer to survive whilst still sheltering in place :D

All four kids had their well child checkups recently.  During his, the Super Kid mentioned to his pediatrician that he gets some bad chest pain during cross country that takes a while to go away.  Because of family history as well as the fact that the Super Kid has a wonky EKG, Dr M wanted him to see cardiology.  He saw a different doctor than Iz sees but Dr S was incredibly thorough.  EKG is still wonky but not worryingly so and his echo was fine.  In our last state that would have been the end of it but Dr S was determined to figure out why the Super Kid was having pain.  She set him up to do a pulmonary-cardio stress test so he did breathing tests, ran on the treadmill, more breathing tests.  Everything looked normal and in fact, his results put him in the 75th percentile for his age so he did better with everything than the average kid his age being tested.  So she had us see a physical therapist for an evaluation and we found the culprit!  Some of his muscles were incredibly tight and therefore significantly shortened and was pulling his shoulders out of position.  And the muscles between his ribs were very tight and shortened.  The PT did a lot of stretches and exercises with the  Super Kid and by the time they were done, his shoulders had naturally moved about 4 inches o_O  He has exercises to do at home to continue to stretch and loosen those muscles to get everything in its proper place and that should stop the chest wall pain.  If it starts  hurting again, we can call up PT and they'll bring the Super Kid in to work on those muscles some more.  I'm glad Dr S was thorough and determined to help :D

Update

School has started back up again.  The Busy Little B and the Super Kid are back to school, Baby W (who isn't really a baby anymore, is he?) starts preschool after Labor Day, and Miss Iz is homeschooled again this year--we will formally start once W goes to school so we can focus without toddler interruptions :p

The Busy Little B is back on his trileptal.  Neuro left us hanging--he might night be having the abnormal brain activity but all those secondary symptoms were back with a vengeance.  The obsessive compulsiveness was really hard for everyone.  We saw his psychiatrist and he prescribed the trileptal again--we started to see a difference within hours of that first dose.  Luckily we already know the med works and it is also used for mood stabilization in psychiatry so he could go back on it.  It is suspected B may have OCD but Dr C says the meds typically used to treat OCD can have some pretty harsh side effects so we don't want to try them with B unless absolutely necessary.  When he gets older, we will probably need to do the evaluations to confirm or rule out OCD but for now the trileptal makes the symptoms manageable and improves his quality of life so that's the plan for now.  Trileptal is one of the "safer" meds and he's been on them for years with no bad side effects so I'm good with the plan :)

Miss Iz continues to improve with her anxiety responses but she's not ready yet to return to school.  She realllllly wants to, though.  She's a little confused why the adults at school can't just help her through anxiety attacks the way I do.  She says everyone knows if she gets too upset, you just need to step in and give her tight squeezes so she can calm down so why won't they?  But the school has a complete hands off policy so while I, as her parent, can step in and help her physically when she gets overwhelmed, the school will not, so she continues at home while we work on her ability to self soothe.  We talk a lot about the fact that she does not have to stay calm because everyone has Big Feelings and it is perfectly okay to express those Big Feelings but we do have to stay in control so we are expressing Big Feelings in ways that are appropriate for the situation.  Her therapist is pleased with the approach we are taking and has noticed a big difference during their sessions.

The Super Kid is really into electronics and computers and has a soldering station set up in his room so he can work on stuff.  He is now my go to when I have something that needs repair :p  Screen broken?  He'll replace it!  Charging port is loose?  He'll solder it back in place!  I think I see the computer and technology high school in his future :p  He has been riding his bike a lot to build up his leg muscles and stamina because cross country is starting on Monday.  He really enjoys cross country and its good for him, too!  Last year all the practices and meets led to less anxiety and a calming down of the hyperactivity.  He declined to do track last spring but I'm hoping this year he will do track as well.

EEG was normal and so we are left with no plan and no direction on getting a plan.  I have come to despise this neurologist.

The Busy Little B is fully off his Trileptal. Things have been......challenging.  Two weeks until EEG day and we can get a new plan in place!

W had his last sessions of OT and speech--it will be so strange not to have those appointments anymore.  We still have OT, speech, therapy, swim, and ESY to keep us busy, though ;)

Iz has really been struggling with impulse control lately. She knows things aren't allowed but she's doing them anyway and then gets so frustrated and mad at herself because she says she knows better and doesn't know why she did it.  It is frustrating for all of us.  We just keep slogging along with the suggestions of the therapist but *sigh* I wish it was a quick easy fix instead

School is out and things are so busy

Isn't school ending supposed to make things more relaxed?

We still have tons of appointments and ESY and evaluations and things have been hectic.

The Busy Little B is weaning off his trileptal and let me tell you, it is not fun.  His level of obsessive compulsiveness has dramatically increased and it makes things so hard on everyone.  I will be so glad when July 13th comes and he has his EEG so things can move forward again and we can get a treatment plan in place again.  All of these symptoms coming back are making things so miserable for him :(

W is turning three so his speech and OT services are ending.  He will be going to the preschool program in the fall so speech and OT will start again in the fall.  It is very hard to get OT through the school system here so I was really surprised he is not only getting OT but he's getting more than he did through birth to three!  He scored really low during his evaluations :\

The Busy Little B saw the neurologist and it was frustrating.  Since she's convinced he no longer has seizures (and she's insistent maybe he never did because how his previous neuros treated him isn't how she would treat someone with absence seizures), she doesn't seem that interested in helping with the secondary symptoms that were helped by the seizure med that are now returning full force that we are weaning him from the med.  She just kept talking about how she'll discharge him as soon as the upcoming unmedicated EEG shows he's fine.  *grumble and exasperated sighs*

Miss Iz's OT told me she's so impressed with Iz's control over her anxiety.  Miss J has been pushing boundaries with Iz, asking her to do things that are more and more difficult and frustrating for her.  It is needed to help her progress but it wasn't that long ago that Iz wouldn't have been able to handle it--now, she's employing her calm down strategies and working through things :)  We are so proud of her!

The Busy Little B also had a good session--he appears to have taken a shine to his new OT, Miss R.  He is connecting with her and eager to work for her and has been doing his OT homework at home so he can tell her all about it and how well he did.  I was worried it would be a hard transition for him, especially since he didn't mesh well with all of the "fill-in" OTs he saw until Miss R came to work there.

Park OT!

It was a nice morning so we met Miss K at a nearby park for OT.  W had a great time!  Miss K brought her weighted ball and they carried it about, rolled it down the slide, played hide and seek.  W worked on all sorts of skills and stayed fairly focused.  It was an excellent session

Last week of school!

The kids were off on Monday so only four days of school in the last week.  Hard to believe tomorrow is their last day!

Both the Busy Little B and Iz had really good OT sessions on Tuesday.  They both worked hard and their OTs are pushing them out of their comfort zone to work on more and more difficult (to them) stuff.  B also had speech.  Since he's only been going to the rehab for speech for a short time, they are still doing further evaluations with him and developing his treatment plan.  His old SLP was working on his conversational skills as well as articulation and that was helping but the rehab center wants to go a bit further and help him with organizing his thoughts and coordinating speech so things go a bit smoother for him.  So often he has so much to say and just can't figure out how to get it out!  They've done wonders for  him through OT so I'm excited to see what speech comes up with :)

W had speech this morning--he got mad at me and then refused to speak to his speech therapist.  He did lots of humming and grunting and much of it sounded like words and she understand most of what he tried to say. We were joking that he has a future as a ventriloquist LOL

Three Day Weekend

We have a three day weekend for Memorial Day and the Super Kid and Busy Little B are grumpy over it because they don't want to miss school :p  Next Friday is their last day and they don't think they should have to give up any of their days of school because there are so few left LOL  Not that long ago, they didn't want to go, now they are sad they can't.  Silly kids

obsessive behaviors

My Busy Little B has been having a hard week.  The rigidity in his thought patterns has been getting worse and he's been fixating on things a lot lately.  Small deviations in "normal" are overwhelming.  He had to take a mental health day from school Friday because he just couldn't handle multiple things being "wrong"--he spent a lot of time rocking back and forth, pacing, doing repetitive movements/actions trying to deal with the changes in his world.  Once school is out, we have to wean him off his trileptal to get an unmedicated EEG and I am not looking forward to it AT ALL.  Starting the trileptal years ago really helped with the fixations and obsessiveness.  The increase in the behaviors now is coming on after a recent growth spurt--neuro did not increase his trileptal to match the growth.  *sigh*  The next few months are going to need a lot of patience on everyone's part!

Today was just not a good appointment day for the Busy Little B.  He had another OT and while he's worked with her before, he doesn't mesh well with her.  She does great with Iz and the Super Kid but chances are always high B will just shut down on her.  She challenges his rigid ideas of how things need to go, he overloads, he shuts down.  She ended their session early and I did some deep pressure and massage to help calm down his system and he attempted speech therapy but they also ended early because he just couldn't pull himself out.  The SLP was very nice and understanding and told him that it was okay because we all get overloaded sometimes and need to take a break and they'd try again next week (he looks forward to speech all week and was so excited to go today :( ).  Next week he will begin working with Miss A's replacement so no more musical chairs with OTs and I'm hoping that will help.  Consistency is good for B!  I just hope the new OT can form a bond with him so he's less likely to get overwhelmed!

Miss Iz did really well in OT.  Miss J said she did an awesome job taking turns with other kids in the therapy room and they worked on things that challenge her and she worked hard and stayed calm when frustrated :)

The Super Kid was supposed to have OT as well but they had to reschedule because there wasn't an OT available.  He'll be seeing the same OT as B starting next week so it will be good we don't have to cancel and reschedule all the time!

Registration for summer swim lessons opened up so I got the kids all signed up.  One thing I was looking forward to was being able to get a better-for-us time slot and well, that didn't happen.  The better time slot is during B's ESY (extended school year) :|  So we had to stay at the same evening time *sigh*  At least in summer bedtime is a bit later so its not such a rush :p  Each of the three big kids is signed up for two sessions but poor W only gets one.  They aren't doing parent-child lessons over the summer and he can't enroll in the preschool lesson until he's three.  So he can't do session one.  But session two starts a couple days after his third birthday :)  My baby is growing up!  He'll be going in the pool for lessons without me :p  Miss Iz thinks I should put my suit on anyway and be in the water swimming so I'll be right there, just in case.  She's worried the swim instructor will have too many kids to keep an eye on :p

Happy Mother's Day!

We are in the home stretch

of the Busy Little B's OT and it scares me :p

He is up for recertification so they are updating his goals and she thinks by the time the next recert comes up in three months, he will have met all his goals and be ready for discharge.  He has made so much progress since we switched OT to the rehab center and that is fantastic but I am also so nervous that stopping OT will also stop progress and possibly cause a regression.  Is it bad I'm  hoping he can't quite hit those goals in three months so we can go longer?  It is just so good for him I don't want to give it up!

The Super Kid is Awesome

He signed up for the Orchestra contest for the school district and his time slot was this morning.  He prepared a piece to play solo and performed in front of the judge this morning.  The judges are professional musicians and they give the performers feedback on how they can improve and what they do really well.  The Super Kid has pretty bad anxiety so this was so so hard for him but he powered through and did it!  I am so proud of him!  The judge told him to work on timing (he plays violin) and gave him an example of what she meant that made sense to him (she said a sentence with really odd spacing/pauses and told him playing music with the wrong timing is very similar to having the wrong pauses in a sentence--it sounds off and smoother playing sounds better).  He was so excited at how well he did and how nice the judge was :)

We stopped to buy dog food on the way.  Usually I am not a fan of shopping with all four because they tend to be hyper and want things and its stressful but today?  I think my children have been replaced or something.  They listened, they behaved, they were polite, they were calm.  Is it just finally "clicking"? :p

Finally saw the OT again

We've been putting off W's OT appointment for weeks now.  First it was the stomach bug so we postponed a week.  Then it was the walking Nyquil Ad so we postponed another week (the OT has a little itty bitty baby at home so she and I both are cautious about exposing Miss K to the germs--I don't want her carrying them home to the little one!).  Then Miss K had something come up with her own kiddos and we had to postpone another week :p  So today, the stars aligned finally and she came =)

W started out so cooperative and was talking up a storm then he got all shy and just wanted to sit on my lap and hide his face.  Then the switch flipped and he was back to being Mr. Chatty and wanted to play all the games.  Overall, it was a good session for him :)

W and Miss Iz ran errands with me today--we spread our grocery shopping out over three stores, a feat I do not normally attempt all in one day but they did really well with all of the in and out and walking about.  We even got complements from several people at a couple of stores about how sweet and smart and polite the kids were!

Miss Iz and I have been working on her "th" blends during school--she really wants to be able to say thirteen (it sounds like fourteen when she says it and it throws her counting off because as she's rattling off numbers, she skips fourteen because she just said it).  So we've been practicing correct tongue positioning and such and when she's focused, she does really well.  Today she practiced up a storm!  She wore one of her Star Wars teachers and told people "May the Fourth Be With You!"  She was adorable :)

Speech on the wrong day!

Over the weekend, W's SLP texted asking to switch days so we had speech today instead of tomorrow.  He was really chatty today and really paid attention (some days he is just all over the place).  They played Barnyard Bingo and he had a blast.  They just filled all the "cards" up and he practiced say the colors and names of the animals and then they put the animal discs back in the barn.  She also had a little portable kitchen and he absolutely loved that--the kid loves kitchens and cooking and food.  I wish they still sold that set because it would be awesome to have (its really old, though).

Miss Iz was on fire this morning when it came to school work!  She did everything on her list plus extra and did really really well on everything.  She is still insistent she can't read because she doesn't know every word ever but she is reading the simpler words and sounding out the harder ones.  When she's focused, she reads a bunch of stuff without realizing it and forgets to ask for help LOL

We are enjoying the spring weather--the last few days have been in the sixties (and 85 on Monday!) so we are spending lots of time outside and at the park :)

Can we get another Poor B?  Yet another OT today (at least they didn't cancel?) but it was another speech therapist as well!  Looking ahead at the schedule, his speech therapist keeps changing as well.  I wish they'd get some more consistency :p  Its not all bad--one reason we moved his speech to the rehab center is because they do have so many SLPs and the other place only had one so scheduling is hard over there and at the rehab center there are choices if someone leaves/calls off.  But it does work better if he has multiple sessions with the same person and develops a rapport.  Hopefully it settles down soon.  On the positive side, he took it all in stride and was cheerful and cooperative yesterday. Much better than the silence of a few weeks ago.

Miss Iz also has OT and she was a little wild :p  Miss J had to redirect a lot but when Iz focused, she did really well.  They were working on body awareness as she's been a bit clumsy lately and keeps running into things and falling.  A problem all of my seekers have!  Funnily enough, when the Super Kid came back later, he also worked with Miss J and she had him do some of the same activities as Iz because he needs to work on body awareness as well :p

The Super Kid also worked more on his letter/number reversals.  She did some vision work with him as well (she's trained in visual processing disorder, something his old OT a few years ago thought he might have.  He does fairly well in most areas but those reversals have plagued him for years).  No one has ever been able to find a reason for the reversals (he has a reading learning disability but not dyslexia).  He was diagnosed with Dyspraxia many many years ago so its possibly related to that--the coordination issues between brain and actions appear to effect many systems so maybe?  We may never find out!  But he keeps working on them and he does have fewer reversals than years ago so maybe someday he'll have learned to compensate for all of them (although when I'm really tired, I revert back to reversing certain letters and numbers so I guess its never completely compensated for in my case ;) )