Monday really was a day off

The sleet turned to snow on Monday and the school ended up cancelling all evening events so we really did get a day off.  And then we got a half day off on Tuesday :p  We were  under a blizzard warning and the major highways across the state closed down so the school called a snow day on Tuesday.  By the time we needed to leave for our appointments, it was clear and sunny and the roads plowed so off we went for double OT, social skills group, and then swim lessons.  For a snow day, we sure were busy ;)

A day off!

I woke to rain on my roof last night, a sound I haven't heard in a while and also a sign that spring is coming. Sure, we may get more snow and cold but the first rainfall also means that the end is in sight. Finally.

Of course, we woke up this morning to it raining ice balls :p We were pelted by them loading into the van to drive the Busy Little B to school so when I got home again I told the Super Kid I'd drive him to school rather than him getting pelted walking to the bus stop and waiting. Iz, William, and I ran an errand and then back home to enjoy the warmth of being inside out of the sleet :p

Usually Miss Iz has OT on Mondays so we pick up the Busy Little B but the scheduler at the rehab center was able to change her time slot to Tuesdays when we are already there for B. YAY!! One less trip per week and now I only have to entertain W in the waiting room instead of having two of them on two different days :p B will ride the bus home so no trip to school, either. I'm liking this ;)

We do still have to go out tonight, though--the Super Kid has parent teacher conferences. That ought to be fun with all four in tow ;)

Tuesdays are soooooo long

The Super Kid hasn't hit 24 hours sick free so he's still home from school.  He felt worse on Tuesday than Monday so he skipped getting out of the house and slept a lot.  Iz and W and I picked up the Busy Little B from school then took him to OT.  Then we rushed home to gather up all the swim stuff and do a little cleaning before rushing off again to social skills group.  There were a lot of people there today so there weren't enough chairs to sit.  I ended up holding W in my lap in a tiny chair and we watched Stick Man on my phone.  Then off to swim lessons for B and Iz (S stayed home).  On Tuesdays I don't have time to bring W to the nursery so  he stays with me and he wants to go swim so bad that the whole lesson is me basically fighting to keep W contained and distracted because POOL!  SWIM! WANT! PEASE! *sigh*

The next step on our homeschooling journey

We have been rather isolated the last month or so as we recovered from the dramatic downturn in behavior and emotional/mental control Miss Iz took during the last months at school.  Her removal from that program has seen rapid progress and improvement but we have spent a lot of time at home and at therapy working through some of the anxiety and defiance and opposition that made a reappearance, especially when it was leading to the extreme aggression and flight we saw at school (and spilling over to home).  We haven't been complete hermits--we still went to the grocery store, appointments, etc, but once she started being able to interact with kids in the waiting room without outbursts, we tried kid gym, open swim, all leading up to the big one:  Playgroup!

Yesterday we went to our first one and she loved it!  She was anxious and nervous and she mostly kept to herself.  She did get upset at one point but she did exactly as she was supposed to--she retreated to a place away from other kids to calm down and then she and I talked through what was upsetting and the best ways to respond in the future (practicing what she should do is a big part of her strategy because once it becomes second nature, its easier to put into practice during a high anxiety or high conflict situation).  She did awesome!  She's looking forward to the next outing :)

Mornings

On A School Day:

*alarm goes off*

Kids:  zzzzzzz..*mumbling* too tired, can't get up.....


On A Non-School day:

*an hour before alarm goes off*

Kids: IT IS MORNING!! *bounces on mom* IT IS MORNING

School is back in session

The big boys went back to school on Wednesday so we are settling back into our "normal" routine.

Before break, my Busy Little B had full educational and psychological evaluations at school to update his IEP.  They identified learning disabilities (same ones as the Super Kid)--he had already been receiving extra help in those areas but now its "official" and his time is upped a bit.  His twice weekly OT sessions are helping with some executive functioning issues as he has been improving!  His OT has been doing some therapeutic listening with him as well to help desensitize him to all the noise in the classroom because he's been finding all the noise and movement in the mainstream classroom overwhelming sometimes.  Slow progress is still progress :)

It is the last day of Winter Break.  Our appointment schedule resets to "normal" today and tomorrow we add school back into the mix.  Time to buckle down again and return to the hectic schedule that is our normal!

W's OT "fired" him a few weeks ago.  He is just not responding to her anymore.  He's been with her the longest of all his therapists and he really loves her, he just is too comfortable with her and won't cooperate anymore.  So she referred him back to the coordinator who found a new OT to work with him but it won't be until later this month

We are having some major school troubles right now, bad enough that I've kept Iz home with me until I can meet with some of  her team and decide whether or not to even send her back.  This is stressful :|

My Busy Little B was a proud little pig!

My Busy Little B's mainstream class has been busily preparing for a musical event :)  On the day of the performance, they did two concerts, one during school hours and one in the evening.  They had to change B's transport time so he could participate so he got over to his special needs classroom late that day but I'm told he did great with the extra time (in fact, we have a meeting soon to discuss increasing his transition time again so he's in the mainstream classroom longer) and had lots of fun performing.

After dinner we loaded everyone up and went to see his evening performance.  It was during bedtime so the littlest ones were kinda cranky but they held up fairly well.  Iz and W were so ready for bed by the time we got home, though LOL

All the songs were about the farm and B got to play a pig!  He kept telling me he wanted to wear pink but I couldn't find his pink shirt so he wore red instead.  It wasn't until we were pulling into the parking lot for the parent performance that he told me he had wanted to wear pink because he was going to be a pig!  If I'd known, I would have looked harder for that pink shirt :p  I just thought he was in the mood for pink!

Much has happened!

I am shamefully behind (again) on updating so of course there is much to share!

Baby W had another swallow study done in the beginning of December.  We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be.  He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on.  However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time.  So back to three times a week for three months!  We just started on month three so the end is (sort of) in sight.

I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :)  We get some minor spit up maybe once or twice a week and even that is becoming less common.  I am cautiously optimistic in saying I think maybe we might be done with reflux meds.

The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes.  She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal.  My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-)  I told  her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it.  With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now.  He has had the neverending ear and sinus infection.  Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill.  Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday.  Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.

My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago.  In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL).  He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart.  I'm not sure where he put it all but he's been eating everything in sight at home as well.  I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p  Sorry, went off on a food tangent.  Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it.  During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came?  He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable.  He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry.  They survived, though, and B was so relieved when the EEG ladies came to take it all off.  No results yet, though :\

Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her.  It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it.  Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out.  Then came severe separation anxiety.  Then came selective mutism.  Now we seem to be entering an aggressive phase.  Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel.  I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :) 

Wait, what day is it?

Last night, I kept having the feeling I was so far behind for the weekend.  Saturday is usually my day for laundry so that by Sunday night it is all folded and put away, ready for the school week ahead.  Yesterday we were on the go a good part of the day and I did no laundry until bedtime.  So I'm thinking, where did my weekend go?  Tomorrow is Sunday and I still have to do ALL the washing and all the folding because I didn't get to it today! Since when are my Saturday's so darn full?

Oh, wait.  There was no school today LOL  IT WAS FRIDAY.  ha!  Carry on, life, carry on.

Throwing the schedule back into chaos

Now that we've had time to settle into the new school schedules and school routines, it was about time to throw some more wrenches in the fire (I know, mixed metaphor.  Just call me Rebel)!  We had a brief break from some of our therapies while we figured out bus schedules and activities and such but my calendar is once again full of appointments and things and we are back to on the go far too much of the time.  Ah, well, it was a nice little break from the hecticness :)  Far better for my schedule to be hectic than for them to not get their therapies at all

Update!

**At Baby W's most recent GI appointment, he was able to lower his reflux meds and he's all the way up to the 6th percentile on the growth chart :)  He outgrew his newborn clothes but can still wear 0-3 months--its funny seeing a Timehop picture pop up for last year in the same outfit he's wearing that day :p

**Iz has finally started preschool.  She was so excited the first day until we walked in the door of the school.  Then she was a bundle of anxiety and fear but the teacher held her hand and coaxed her back to the classroom and the rest of the week went rather smoothly.  She says it is fun and has even learned a few kids' names

**My busy little B has done so well transitioning back into the school routine that they are ready to start his transition into a regular classroom again.  Like last year, he will attend for an hour in the morning at the local school and then return to his program for the rest of the day.

When the Busy Little B has homework, he's so excited and wants to do it right away and is so pleased with himself and can't wait to show it off.  When S has homework, he spends all his time trying to get out of it.  If he put even half the amount of effort into doing it that he puts into trying NOT to do it, he'd have a whole lot more time to enjoy himself instead of the hours long battle to get fifteen minutes of work done........