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Saturday, December 30, 2017

We are officially homeschooling

I filed the paperwork a few weeks ago.  Iz is sad she doesn't get to be with her teacher anymore but we just don't feel it is a safe environment for her (and her psychiatrist agrees.  He is not at all happy with how the school handled the situation and their "plan" going forward.  He wanted to get her moved to one of the therapeutic day schools but our local district won't consider it until she has multiple incidents over a long stretch of time.  I'm not willing to wait for many bad things to happen to get her moved).  But she has improved so much mentally and emotionally since she has starting staying home!  We worked so hard to get her into a school program and it is so disappointing it has ended this way.  But I have my girl back--sure, she still has moments of anxiety and struggle but its so much better than the last few months as her mental and emotional health nose dived.

She is doing awesome with schoolwork.  She loves to do "school" and we signed up for an online program the Super Kid used to use to practice his math skills on.  Iz does math and language arts through this website and she is going through the modules so quick :p  She's in kindergarten but some of her math skills are in the third grade level.  She says she likes that the math at home is harder than school because its more fun to do.  She is impatiently waiting for me to get off the computer so she can do school :p

At the moment, we are being very relaxed because its winter break and the boys are all home but once they go back to school, Iz and I will make school more structured.  There's a local homeschool group that does field trips and playdates for socialization so we are watching the calendar for things age appropriate for her--she is looking forward to making new friends who do school at home like her ;)

Monday, December 4, 2017

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 :|

Friday, November 10, 2017

2 year cardio checkup

Iz had her biannual cardiology workup this morning.  She had an EKG and Echocardiogram and then we visited with her cardiologist.

She has no changes to her treatment plan and no restrictions, which is fantastic.  We like hearing that things are fairly stable.  We like hearing that we don't need to add in any medications or monitoring.  We like hearing that she can stay on her every two years schedule.

But I'd be lying if I said this visit hasn't left me with some pretty severe anxiety.  Yes, she's doing well.   Yes, she gets to continue living her life as she has been these last few years.  Yes, she's clear to keep on keeping on.

But for the first time since she recovered from surgery, for the first time in over five years, for the first time since she left the hospital, her heart is worse than it was the last visit.  The changes are minor, so minor that her cardiologist isn't worried, so minor that she doesn't need to come back early for monitoring, so minor that she doesn't need to do anything differently,  but it is still a step in the wrong direction.  It is still an undesirable trend.  It is still not as good as last time.

Her echo was great.  Her EKG is showing some issues with the electrical system.  We got a list of symptoms to watch for--if we see any of them, we go back for a checkup.  We got a reminder of the importance of her scheduled checkups.  More than one reminder--Dr B may have said its not really a big deal right now but he repeated four times throughout the visit that we MUST keep her next appointment to get a new EKG and checkup.  Which, of course I was going to do anyway.  I keep a reminder in my phone about setting up the new appointment when the time comes (Oct 2019 will remind me to schedule the next November appointment).

So I keep reminding myself it was a good visit.  Don't borrow trouble.  And in two years, hope things have swung back to the "getting better" side of things.

Sunday, October 8, 2017

We are here and mostly doing fine.  Nothing big or major has happened but things are just a bit overwhelming presently.  Perhaps things will feel better once we settle into the new schedule--aside from starting school again, we've added five new therapy sessions, reorganized the timing on a few more, and the Super Kid is doing cross country.  Busy busy busy.......

Tuesday, September 5, 2017

Um, what did we do again?

I think my brain has gone on overload.  I can't for the life of me recall exactly what W did with the educator at the latest appointment.  I remember her carrying in some toys and the sort of blank.  Even with all the appointments, I can usually recall the details for at least a week or so before they blend into the background of the neverending round of appointments but nope, not this one.  Blank.  Huh.

Saturday, September 2, 2017

Another day at the zoo

The kids got to "meet" a Bearded Dragon at the zoo's storytime today. Only Iz was brave enough to go up and pet her, though :p  Last week, we were the only family at storytime but this week there were a bunch of families.  All the kids were posing with the bearded dragon so their parents could take pictures but poor Iz had to pass up a photo op because I left my phone in the car and didn't have my actual camera on me :p  So no pictures of today's trip to the zoo.  We didn't stay long because it was hot but we did remember the stroller so we went to the far side to see zebras and giraffes and the ostriches :)

Friday, September 1, 2017

The Weighted Blanket Is Here!!

W's OT ordered a weighted blanket for him two weeks ago and it came in today :)  He's been having such a hard time sleeping lately (which means no good sleep for me, either) and I noticed that when he does sleep, he's stealing my foam pillow (kinda heavy) and putting it on top of himself or he's climbing in my bed and insisting I have my arm pressing down on him.  The OT thinks maybe he's seeking that deep pressure and the weighted blanket might help.  I'm willing to try just about anything to be able to sleep all night!

He took a nap with the blanket and went to bed with it.  He does NOT like it touching his feet but if I arrange it so its only across him from knees to shoulders, he's very relaxed instead of restless.  *fingers crossed* this is a solution to our sleep issues.

After OT we just had one more appointment--a follow up at the pediatrician.  The hives/rash isn't completely clear but it looks much better.  Still no clue what it could be a reaction to.  It is possible it was viral since my other kids are prone to hives from viruses.  Dr M says to continue the zyrtec for at least a week after all the hives/rash has disappeared but if after a month its still there (either the existing hasn't cleared or new spots have popped up and stuck around) come back and we will investigate further.  We have the steroid cream still to use on any bits that get itchy.

Thursday, August 31, 2017

Chatty morning

W had speech this morning and boy, was he ever chatty!  Neither of us could understand about 90% of what he was saying but he sure did have a lot to say LOL  They read some books and played with a baby doll and its teddy bear and he kept up a steady stream of chatter interspersed with a few understandable words here and there :)

After lunch we headed out to the Super Kid's open house.  Seventh grade!!  The good news is he has his favorite class on his schedule (social studies), the bad news is he may not get to do cross country because he has speech and OT and therapy two days a week and cross country meets every day :\

We stopped at our favorite thrift store to see what clothes they had and everyone found a few things.  The Super Kid has been working around the  house to earn money to save up for a Nintendo Switch so he's starting to understand that money means working for it so he has become a HUGE fan of thrift stores.  He found some forty dollar jeans for seventy five cents that are in great condition and he keeps telling me "why would I pay for new when I can save so much money!?"

Why are we up so early??

We were up way too early this morning :p  Well, early for summer hours anyway ;)

We had to reschedule W's physical therapy and met at 8am instead of 9:30 today.  Miss C and I both forgot about the issue of dew and by the time it clicked that the playground we met at was so wet, three of four kids were already all wet so we shrugged and kept on going LOL  It did make things a bit difficult once PT was over, though, as we had to quickly run home for people to change when I had planned on going straight to our next appointment.  We just managed to get to the next appointment on time.

Pretty much a repeat of yesterday morning's appointment only it was the Busy Little B getting an occupational therapy evaluation instead of Isabelle.  I'm fairly confident insurance will definitely approve his services as the OT evaluating him is recommending two times a week because his areas that need work are kind of severe--one time a week is pretty standard and it takes alot to get them to ask for twice.  I don't know if insurance will approve twice or if they'll knock it down to one but the fact that they have enough codes to request twice means it would be difficult for insurance to argue there are no necessary treatments. Then again, its an insurance company so *shrug* you just never know.

We had a wonderfully long break between appointments so we were able to go home, watch a cartoon together, eat lunch, play outside, and then head out again so the Super Kid could go to speech and OT (why,  yes, all four will be in OT and three in speech.  This stuff runs in families :p).

Tomorrow is an easy peasy day--only two appointments!

Wednesday, August 30, 2017

Did we even stop moving at all today?

We started out our day getting an OT evaluation for Iz that lasted almost two hours.  One thing I can say about our rehab place is they are really thorough when determining if you need services, what those services should be, and what your goals should be.  You might remember she did occupational therapy here last year and was discharged but Developmental recommended we pick it up again.  Hopefully insurance approves it because it did help last time and we still have some areas to work on.

We ran home to get a quick lunch and then were off again to take the Busy Little B to speech therapy.  He seemed really excited to come and tell me all about it when he was done--he even talked to me about it instead of zoning out on the waiting room tv (this was a first--he always gets distracted until they turn off the tv.  The other kids in the waiting room just LOVE when that happens.....).

We ran a quick errand to pick up some necessities and then were off home for snack and a tiny bit of quiet time before we were off to open houses.  I was expecting maybe a few minutes in each classroom but three classrooms, some paperwork, and two different schools took just under three hours. OH BOY.  We had a late dinner and bedtime.  Such bad timing--tomorrow we have to be out the door at 7:30 am.  Not a good night to go to bed late!

Tuesday, August 29, 2017

Today, we napped!

Only one appointment, OT with Miss M.  Remember how W used to HATE swinging in Miss M's blanket?  He'd cry and fuss and barely tolerate it.  The last few sessions, he has asked to swing!  Today, he kept asking to swing.  He swung at the start, he did several activities, and then swung at the end.  He didn't want to stop and rolled himself up in the blanket so he wouldn't have to get out LOL

I had good intentions for the rest of the day--a few errands, some school shopping that needs to be done, maybe a fun outing for the kids.  Instead, we took a nap.  Maybe tomorrow :p

Monday, August 28, 2017


W had speech this morning.  He was very excited Miss H was coming and then when she got here he would barely speak to her.  He was being a stinker (as his Aunt Heidi would say) and do his own thing instead of following the plan.  Miss H tried to get him back on track but when it became quite obvious he would not be deterred, she incorporated the toys he was focused on in her activity (reading a book) and managed to capture some of his interest.  When it was time for her to go, he walked her to the door (as he usually does), gave her her shoes and then waited at the door to say goodbye.  She and I talked for a bit about scheduling and the upcoming school  year and he got inpatient.  He started pushing on her leg and shouting GO! GO!  She was breaking the pattern of departure and he wasn't having it.  Luckily she thought it was funny and praised him for using his words so clearly.

We also ended up having an impromptu pediatrician appointment for W.  He broke out in some hives a few days ago so we did the whole allergy med, baths, itchy cream route and it was getting worse not better.  In fact, while I was on the phone with the nurse discussing if we should come in or wait it out, three more spots popped up on his face.  So she brought us in and Dr. M hadn't seen anything quite like it before.  Because, of course he hasn't.  These are my kids, who love to beat the odds in the wrong direction.  If our family can manage to have something there's little chance of seeing, we do it!  The hives turned rash don't look like any of the common contagious spotty things, doesn't look exactly like an allergic reaction, doesn't exactly look viral.  Best guess is a random reaction to something that overflared or maybe something viral (Iz and the  Super Kid both get the classic welt-type hives 3-5 days before some of the big viruses).  So we are adding a second allergy med to alternate with the one he's already on and he has a steroid cream for the worst parts of the rash.  He's in good spirits and hasn't slowed down at all.

The pharmacy was having a hard time with the scripts (one they didn't even had) so we went off to our next two appointments (we were running late but they knew we were going to be due to W's last minute appointment) and came back later to pick up the script and another branch of the pharmacy for the steroid cream. 

Saturday, August 26, 2017

Saturdays at the zoo

On Saturdays, our local zoo has a storytime session for the kids.  They read a book and then get to meet a zoo animal.  This week was Sammy the Star Tortoise--they got to pet him and learn all about what makes Sammy special.  The highlight of the visit?  Sammy pooped.   Yep, you heard that right--they most enjoyed the part where Sammy pooped.  Not his neat domed star shell.  Not the spines on his front legs.  Not his beak.  His poop.  *sigh* KIDS.

We spent a little bit of time walking around and seeing some of the favorite animals.  First and last stop on our trip was the koalas.  They were sleeping both times we were there but the kids were still pretty excited to see them in person

We were there during Zookeeper talks so we got to learn some extra facts about koalas and then tigers in the next exhibit.  The Zoo Educator at the tiger exhibit pulled no punches for the young ages of my children so now my five  year old knows that tigers will suffocate their prey with their strong jaws if they can't break its neck right away.  Now, my 12 year old was fascinated by this but perhaps the five year old could have lived with just petting the fur and looking at the skull and teeth :p

W's favorite is always the red panda.  It will run up to the glass and have a look at whoever is out there and then go back and forth.  W would stand there forever if you let him

The Busy Little B likes to go into the "Tortoise Tunnel" in the children's play area and peek at me:

W was on foot this trip instead of the stroller so we were limited in how long we could stay before he started to get tired.  We need to remember the stroller next time for the hike out to the Savannah exhibit so the kids can see the giraffes :)

Friday, August 25, 2017

At least it wasn't six?

After yesterday's six appointments I could have used a break but, alas, it was not to be!

We started our morning with physical therapy for W.  We were meeting at a new park and ended up having to cut through freshly mown grass to get there while the guy was still cutting the big side lawn near the playground.  For most this would not be a problem.  For me, fresh cut grass is an asthma trigger.  Trying to climb a big hill whilst holding's ones breath is harder than anticipated......  It wasn't as bad as it could be--I had a lot of throat clearing but no wheezing so I got lucky!

It was actually an excellent park for W to work at.  Lots of variety in equipment, hills, ledges, stairs.  He got in quite a workout without even realizing it :)

We did a grocery run next (always super fun with all four under foot) and stocked up, especially on veggies.  My little bottomless pits will have plenty of snacks.  I did, however, hide my hummus because I'd actually like to eat some of it this time.  Once I've gotten some, they can have at it but I get to go first!

Then off we went for Iz's regular check-in with GI.  Everything is going well and she gets to go a whole six months before her next visit!  She was a bit disappointed there are no changes to her meds but better they stay the same than go up, yes?

We went home for snacks and quiet time and then we were off again to take the Super Kid (he can't make up his mind what he wants his nickname to be) to back to back appointments for speech and occupational therapy.

It was so tempting to do the whole dinner out thing again but I behaved and went home and made Taco Tuesday (and now you know how many days behind I am on posting about things LOL)

Thursday, August 24, 2017

Happy (belated) Eclipse Day!

We did not get to see it in person because we were in the midst of thunder and lightning and so much rain there was flooding around the city.  We actually drove through the beginnings of what would later become and impassable intersection because so much water collected.  It was getting pretty dark due to the eclipse and the storm so it was hard to see the water--I was lucky it wasn't deeper yet and we made it through.

We started our day with Miss S the Educator.  W was really invested in what she was doing, probably because she brought a few things he hasn't seen before.  One of her main goals is to get him to focus for longer stretches of time so he can benefit more from his other therapies and everyone has noticed he has been improving :)

W took a nap and then we ate lunch while watch the live NASA feed--we got to see the eclipse over the Pacific and then in Oregon while we prepped and ate lunch.  I must admit I took a bunch of screen shots on my phone because it was pretty neat!  I had very little hope our storms would clear up long enough for us to see anything in person but the NASA feed was a good substitute.

Then off we went to take the Busy Little B to speech therapy (where we drove through the beginnings of the flood).  Everyone who wasn't with a client hung out in the waiting room for us while we watched the sky get darker and darker and darker.  We were not in the path of totality but we were supposed to come pretty close so even though we could see anything through the clouds, we could watch the light black out and then come back.  The kids though it was cool for a few seconds and then asked to watch cartoons in the waiting room ;)

From there we went straight to the dentist for four back to back appointments.  That was a super fun time in the waiting room.......  I got to see the last half of Boss Baby.  I suppose at some point I'll watch the first half LOL

I fully admit to breaking my budgeting streak and picking up some dinner on the way home.  I'm trying to be good and do most of the cooking at home to save money and because its healthier for us but I was tired and just done for the day.  So burgers it was :P 

How about a little attitude?

Miss M came for occupational therapy and oh, my, did W have a little baby attitude with her!  He had an idea of what he wanted to do and how the session was going to go and he made his displeasure known that her plans did not match up with his plans.  There was a lot of head shaking and pouty lips and plopping down to glower at her.  A few times the both of us had to stifle laughs because two year old pouting is also pretty darn adorable. He did eventually settle down and run through his tasks and then took a nap!

Tuesday, August 22, 2017

We got rained out!

For PT today we were supposed to check out a new playground but we got rained out!  Its been gray and rainy for a few days and the kidlets were getting a little stir crazy so instead of Miss C coming to the house, we met up at the nature center to play.  She checked his feet for me to make sure his pronation was at a normal level for his age (two of the other kids wear custom orthotics because their feet roll inward badly enough to throw the alignment of their knees and hips out of place.  W's feet roll inward a bit, too, but I was unsure at what age it is still considered normal and what age it becomes a problem.  Its nice to have experts to check these things without having to schedule an extra appointment somewhere!

Monday, August 21, 2017

Peanut :)

Today was another visit with Miss S, the educator.  The big hit toy today was one of those magnetic doodle boards.  We used to have one but it got worn out after much use.  I don't think W was around for that one but the bigger kids get excited whenever Miss S brings hers and therefore W gets excited when she brings it.  He's been working on holding crayons in OT so I think his newfound ability to actually draw on the doodle board helped get his excitement up.

It is kind of funny--whenever one of the other therapists call W anything other than his full name, he ignores them.  But Miss S calls him Peanut and he loves it LOL  He gives her his little grin and snuggles on her lap and they read (most of) a book together.

My Busy Little B also had speech--one of the things he has been working on is being able to tell me what he did in their session instead of telling me "I dunno" or "I don't remember".  At first, he needed lots of prompting from Miss A but this time he did great. He came right out and told me all about the activities they did and what sound he worked on (th).

Saturday, August 19, 2017

Another busy day

But today it was Izzy's turn to be busy.  We started off with therapy with her psychologist and then headed over to do her sleep deprived EEG.  She never did nap the way they wanted but the EEG tech did get her to lay quietly with her eyes closed so they could get the data they needed.  Unfortunately, her results were abnormal, showing activity in the right temporal lobe.  The neurologist was hoping she would have outgrown it but nope, still there.  We went up on her seizure meds again so hopefully some of those breakthrough seizures and symptoms she has been having will stop.

Friday, August 18, 2017


Today was quite the busy day!  We had OT first thing.  W was a little cranky--I had to wake him up at 6:30am to feed him breakfast because he could not eat or drink after 7am.  By the time Miss M got here, he was mad and uncooperative.  She was patient, though, and got him distracted enough to play a bit.

After OT, we were off to the Children's Hospital for yet another swallow study.  We do them about every 4-5 months and are always disappointed by the results.  W threw a big massive tantrum over having to sit in the radiology chair and refused to drink his barium solution.  He was so hungry!  They gave him a graham cracker and a car to take home and that calmed him down and then he drank 2 ounces of thin liquid in 17 seconds and had no aspirations or penetrations!  YAHOO!  They want us to continue to thicken for a few days at half the amount of thickener to ease him from nectar to thin but after that he is cleared to drink normally :)  The SLP did say to continue with his very thin straws for awhile since his last swallow study showed he only had penetrations when he took big gulps.  We are to watch for signs of aspirations, keep him on the controlled drinks via tiny straw, and when he's doing fine on thins with the straw we can slowly start a transition to thicker straws and open cups.

Thursday, August 17, 2017

PT day!

We tried out a new playground and it was a big hit.  Only problem was the different play areas were so far apart and we spent a lot of time crossing from one side to the playground to another whenever something caught W's eye.  It did give Miss C a chance to see how much improvement he's made running, though, so that's a plus!  Mr. Piper was able to come to this session but then he spent the whole time running kids to the bathroom because of course no one had to go at the same time ;)

We are seeing more and more improvements since starting the migraine medication!

Wednesday, August 16, 2017

Triple therapy day!

A little schedule maneuvering today meant three appointments today, two for W and one for my Busy Little B.

First thing was another visit from the Educator.  Normally we don't see her so soon but her last visit was a reschedule from the week before because her family took a trip.  W has started to get really comfortable with her and gets so excited when she comes.  Little imp hid some of her toys, too, which I didn't find until after she left so they went into the little basket I keep on top of the fridge just for therapy toys I find stashed around the house.  I was talking to Miss S and apparently I am an oddity--most of the time if a toy is left behind, they never see it again.  She's never had anyone buy a basket to make sure left behind toys are corralled and kept safe until the next visit.  I can't even imagine stealing toys from the birth to three therapists :\

Next came speech--Miss H is taking a vacation later this month and so she's fitting in make up sessions here and there and today was one of ours.  She's been bringing barn themed books and toys and he loves it :)  Of course he will NOT name off animals for me but he will for her!

And then the Busy Little B has speech.  His speech therapist keeps trying to get me to take a break from speech even though he's still behind.  He has his routine down, he looks forward to seeing her, and he's been really cooperative and attentive.  I could understand taking a break if he was burnt out and I have given him time off in the past when he got burnt out but he's so focused right now.  If we break his good routine, I'm worried he will regress.

Tuesday, August 8, 2017

W loves his OT :)

W is learning to say his occupational therapist's name :)  His pronunciation is a bit off but it is adorable and she loves it :D

He did so well this week!  We have all noticed a change in his abilities since starting the migraine medication and his skills and attention span have improved quite a bit.  He still has moments of uncoordination but they are fewer and shorter episodes.  He has mastered some of the fine motor skills Miss M has been working on and is moving on to more complicated things :)  His sensory issues seem to have gotten a bit worse, though, so she is refocusing on some of those as well and has shown me some new massage techniques to help him get more input.

Saturday, August 5, 2017

Speeech day!

W was so talkative during speech today :)  He's picked up a bunch of new words and is starting to use more and more independent phrases.  The biggest problem we are having is enunciation.  If I have some context clues, its pretty easy to figure out what he's saying but man, oh man, is he ever getting mad at me when he tries to use his words to tell me what he wants and I cannot figure out what he's saying.  He'll just randomly say something to me, I have no idea what it is, he gets mad and starts screaming and crying and repeating the word over and over and I STILL can't figure it out.  He's not quite at the point where he can do charades or give me an alternate word so its all a guessing game.

Friday, August 4, 2017

PT is down to one

Now that Miss Iz has finished her PT, our PT day is short!  Just W in the mornings.  This week we went to the Early Childhood playground at our local school.  We've been visiting different schools with a preschool program lately so the equipment is a little more on W's level.  However, his balance and coordination has improved so much since starting the migraine meds that next week we are trying a regular elementary playground.  He likes those better because there is more to do but he was so unbalanced we stopped going to a bigger kids playground.  We've never been to next week's school so the kids are excited (they spotted the playground driving past and asked we visit during PT).

Monday, July 31, 2017

Another GI visit

W had his checkup with GI a few days ago.  It was a pretty good appointment--he continues to grow, albeit very slowly.  Dr A is pleased, though, because it IS growth and he's sticking to his "new" curve.  He's four point something percent on the growth charts and that percentile creeps up slowly so he periodically jumps up to the next curve.

He saw a nutritionist the other day but not his normal nutritionist.  She wanted me to put him on a low fat diet.  Said if we were really worried about calories, I could stir vegetable oil into skim milk.  Told me to push whole grains on him, particularly whole wheat bread.  His neurologist wants him to avoid breads and some other grains because they can trigger migraines and he just started treatment for migraines--the nutritionist said she'd never heard that and he needs more grains.  I must admit that the nutritionist annoyed me :p  GI advised that I not listen to her because her advice was contrary to what GI and W's regular nutritionist want and goes against what we are already doing that has proven successful.  I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p

We've scheduled his next swallow study for August 10th.  We are cautiously optimistic that his swallowing has improved due to his habit of stealing unthickened drinks and hiding while he drinks them--while we try to prevent that, it happens and he's been doing ok.  No infections, no major choking/coughing spells unless he spots me coming and tries to chug it.  Dr A has relaxed so much about his getting some unthickened liquids (he's still nursing, steals drinks, etc) because he's never ever had any type of respiratory event because of it.  We are really really lucky because I know lots of kiddos (and adults) who aspirate have to deal with aspiration pneumonia and tons of respiratory issues and we've managed to avoid all of that.  Perhaps because his aspirations seems to be a muscle coordination issue so it doesn't happen often?  Even on his swallow studies, he has lots of swallows that are just fine and then one will penetrate, sometimes shallowly, sometime deep.  I just hope its better because he HATES the thickener.  Hates it so much :p

Sunday, July 30, 2017

Busy Little B update

The Busy Little B had extended school year this summer--it was a short program, only a month, but he went four half days a week and he had so much fun.  Every day he was full of stories of science and math and experiments and the mobile zoo even visited for their unit on animals (he did his very first research project!).  He's looking forward to third grade.  Miss Iz was a tad bit jealous but she's enrolling in the same special needs school in the fall and ESY is automatic through that program--unless the rules changes, she'll get to do ESY next summer.

Saturday, July 29, 2017

Iz update

Iz is mostly holding steady.  She's had a few of her regular specialist visits and things are mostly staying the same but we do have some testing coming up.  The big one is a sleep deprived EEG like W did.  Keeping her up actually shouldn't be too hard since all I have to do is skip her melatonin :p  But man, she'll be grumpy when the time comes.

Our other big change is that developmental recommended she restart OT so we have an evaluation coming up to see if she will qualify again to do it.  She is excited because she loves OT :p  She's started chewing things again (she turned a set of mini blinds into confetti o_O ) so at the very least OT could help with that!

Friday, July 28, 2017

W update

We went on a trip and it just threw everything off :p

W is making good progress in speech therapy--he even put together two words independently (more water) instead of just repeating phrasing he's heard us use often.

OT is also going well--a little too well, in fact, because his fine motor skills have progressed to the point he can get my gate at the top of the stairs open :\

Our PT is at a bit of a loss, though--W continues to be all over the place in balance and coordination, some days he does so well and other days he's constantly falling and running into things.  The neurologist did a bunch of testing and nothing turned up.  She thinks he might be having some migraine activity that is effecting balance, coordination, speech, etc instead of causing pain so we've started him on a daily migraine medication.  So far, it does seem to help as his periods of unsteadiness are shorter and further apart.

He turned two recently and seems to be determined to show is he is most definitely two with the stubbornness and the "I do it myself" attitude LOL

Wednesday, June 14, 2017

The day just started off bad :\

Miss Iz was so excited for Miss H to arrive for W's speech session.  She ran right out the door to greet her and ask what she could help with.  She offered to help carry things in but Miss H said no, she would carry her own things.  It all just went downhill from there.  Miss Iz spent most of W's session crying and carrying on and  having to be sent up to her room.  She'd calm herself down and come down to try again, her offer of help was turned down, and off we went again with the melting down.  *sigh*  I sure hope next time goes better......

W had a good session at least.  He really enjoyed the activities and books today and was really talkative.

Tuesday, June 13, 2017

And the other kids have discovered their favorite day!

Physical Therapy day!  We met Miss C at the kids' favorite park.  She said she's lived and worked in this area for a really long time and didn't know the park was there.  It was a good one to do PT at because there were several activities for  him to do to work on his goals and the three older kids had plenty to keep them occupied as well.  We arrived fifteen minutes early and W had worked out some of his energy so he was more focused on what Miss C wanted from him.

Miss C told us about another park near our house that we didn't know about with a good playset and a splash pad.  I bet we'll get plenty of use out of that one over the summer!

Miss Iz was supposed to see her GI after PT but we got the call that Dr N had a family emergency so we had to reschedule for August.

Miss Iz had her PT session in the afternoon and it was a little rough.  She was just so over all the exercises and activities.  Miss N got her attention by promising to show her something new if she did her work and that got her motivated and she got to try out two new exercises (rocket ship and dolphin).   Dolphin was too difficult but she had fun with rocket ship.  Miss N and I are thinking the last few sessions have been more difficult because she's getting bored with doing the same few things over and over.  There's not a great deal of wiggle room in what she can do but maybe if we change up the routines just a bit we can get her attention and cooperation back.

Monday, June 12, 2017

And the Educator gets to see "normal" W

Miss S is still new to us so W has been on his best behavior--calm, focused, cooperative.  Today, Miss S got to see him at his normal speed--distractible, short attention span, demanding, flitting from one thing to another. She was flabbergasted at the change in him.  I told her this is pretty normal for him.  He can be a lot more flighty so it was still a calm day but he is always on the go, never stops, doesn't stick with one activity for too long.  Kid doesn't even stop moving in his sleep until he slips into a deeper sleep.  Its good, though--she needs to see it because this is what she was brought in to work on :p 

Saturday, June 10, 2017

It is official!

There are four of them underfoot 24/7 :p  It is one of those things that you both look forward to and dread--no super early alarms, no school runs, no homework, no rushing about to drop off and pick up.  But then again, they all need to be fed and entertained all day long :p

Friday, June 9, 2017

W's favorite day has arrived!

He's been working with his OT, Miss M, the longest and he's the most comfortable with her so he is always super excited to see her :) Miss Iz loves to see her, too, since Miss M is very relaxed and always includes her.  Iz ran out to greet her in the driveway and Miss M let her help carry things in.  She loves being a helper to the therapists so when one has a job for her, she's thrilled!  Miss M had W and Iz taking turns with the various toys so it was a relatively peaceful session ;) 

Thursday, June 8, 2017

Speech with an extra kid!

Our schedule with the SLP has been so erratic lately (she has been rescheduling) that we have had plenty of W's speech appointments after Iz gets out of preschool but its not official--with preschool out, she'll be there for all of them.  It is quite stressful for me :\  I have to try to keep her from interfering and occupied but ALL she wants to do is "help" W and be involved and take part.  W's SLP isn't very flexible and she seems to struggle having other kids around vying for her attention.  I'm trying to keep Iz separated but things will only get worse at the next session when the boys are out of school and all four of them are underfoot!

Tuesday, June 6, 2017

PT times two

Now that Miss Iz is out of preschool, she gets to be there at all of W's appointments this week.  First up is PT.  Now that the weather is nicer, we are meeting at parks to take advantage of all the equipment and the sunshine.  I picked one of Iz's favorite parks hoping that she'd be occupied with playing and not need (want?) to attempt to monopolize Miss C's time.  NOPE.  She was distracted briefly with playing but soon she was vying for attention and when she didn't get it she stomped back to the van and sat inside the rest of the session *sigh* I sure to hope it gets easier :p

After W's PT we ran some errands--this restored Miss Iz's good mood as she likes running errands.  We stopped at home to have some lunch and then off we went to Miss Iz's PT.  She was excited to go and then once we were there she was surly and uncooperative.  Miss N was very patient and managed to get Iz to get back on track and we made it through the session but man, was it a rough day!

Monday, June 5, 2017

The Educator

Today was W's second session with the EI educator, Miss S.  We are still in the "get to know you" phase so she brought a bunch of toys and is letting W warm up to her.  He is super shy when she first comes in but warms up to her when she gets out toys :p  She lets him lead the way right now so he tends to flit from activity to activity but eventually she'll be working on helping his stay on task for longer times.  Her visit was complicated by Iz being home but she is rather flexible and was able to incorporate Iz and make her feel included while still getting some one on one work with W.

Saturday, June 3, 2017

Speech and the Barn

W was really focused this week at speech therapy!  Miss H had a book all about farm animals for them to read and then she had a barn playset to play with and W really liked it.  He did get a little restless the last page of the book but when Miss H told him they could play with the barn after the page, he turned his focus back on her and finished the book.  He had a lot of fun with the barn and was pretty sad when Miss H had to go.  Miss Iz was home (Miss H had to postpone our session an hour so Miss Iz was home from preschool) and she really wanted Miss H to see their blocks so Miss H stayed an extra few minutes to see Iz and W make some towers (W has been practicing in OT how to hold the blocks so they will stack so he got to show off his skills).

Friday, June 2, 2017

The Nature Center

W's PT mentioned there was a free indoor area at one of the parks we like going to so the kids and I went to check it out.  We always loved going to the nature center back in Michigan and this one is a lot like it.  They have a play area with toys and games and a big fish tank, a reading area with a couple games and huge windows to watch wildlife, and a room with tanks of fishes and turtles.  They had a lot of fun and a few days later when it was time for PT, W went back again to explore with Miss C (it was raining so no playing at the playground for PT)

Thursday, June 1, 2017

Oh, dear

Someone decided to give herself a haircut.  It was long in some places and very very very very short in others.  Off we went to get it repaired and there really wasn't much they could do with what was left :p

Wednesday, May 31, 2017

Cake time!

We held off on a birthday cake for the Busy Little B  until his Dad could be there.  He went with me and picked out his own and was so excited to get Ninja Turtles :p

Tuesday, May 30, 2017

ENT checkup

W had his followup at the ENT to check on his ear tubes.  Everything looks great!  His throat was a little irritated but since he was still getting over the recent sickness, that wasn't a big deal.  His ears were clear so the tubes are doing their magic :)  A cold like that ended in ear infections all winter so it was good to just have to deal with the cold this time!

Monday, May 29, 2017

PT at the park

With the weather finally getting nicer, physical therapy for W has moved outdoors!  We met at the kids' favorite park and tried out the playground equipment.  I think, though, that that particular park is perhaps not the best choice when its just William--there are multiple play areas and we could not keep his attention because he was so busy trying to run from one area to the next.  He did complete a few tasks Miss C had set for him but most of the session was just him running around screaming LOL

After preschool pickup, Miss Iz had her physical therapy but she had a really awesome session.  She was a PT rockstar ;)

Saturday, May 27, 2017

OT practice

One of our goals for W is to learn how to correctly use utensils, the spoon in particular.  He still struggles to keep it level so it doesn't dump all over him :p  If things are too thin or slippery, it just ends up in his lap and he gets so frustrated.  I made a nice thick soup (potato) that stuck to his spoon and he had fun practicing eating with the spoon.  He was so proud of himself!

Friday, May 26, 2017

New park!

The kids have been wanting to try out a new park we spotted on one of our walks but its always so busy it would be hard to do with Mia along for her walk.  The Busy Little B received a giftcard to Wendys for his birthday and he was so excited to take everyone to dinner because the Wendys near S's therapy office has $1.99 Kid Meals.  Since we ate dinner out and I didn't need to cook, we had extra time so off we went to check out the new-to-us park without Mia along.  They had a great time and another family was there with kids about their ages so it was even better :)

Thursday, May 25, 2017

The Busy Little B

B has done so well in speech therapy lately that his therapist offered a "break" for all or part of the summer.  As pleased as I am that he has made progress, I don't want to lose that momentum.  He enjoys going to speech so I don't feel like he'll get "burnt out" on it.  And even though he has made progress, his enunciation issues are definitely hindering him at school.  The teachers can't always understand him and his spelling scores are really low because he spells phonetically and since he says the words wrong, he spells them wrong and he has trouble sounding things out so he's behind in reading as well.  So I'd much prefer we keep on working our way through it in hopes that the improvements he can make over the summer help with school in the fall!

Saturday, May 20, 2017

W had a good OT day

We ran a couple short errands this morning before Miss M arrived and we got home maybe ten minutes before she was due to arrive so we played a bit on the playscape outside while we waited.  Miss M did the first part of OT outside--W LOVED that.  Then we came in and she had some new activities for him to try.  He stuck with it for a good length of time.  At the end, he got the usually hated blanket out himself and demanded swinging.  He climbed onto the blanket, laid down, we swung him and he smiled so big the whole time.  It was a great session :D

Friday, May 19, 2017

W had an awesome speech day!

He was fairly focused and cooperative.  I think it had something to do with him being half asleep LOL  It is kind of gray and dreary and we both sat down for a cuddle after breakfast and fell asleep :p  So when Miss H arrived, he was just waking up so he was still all cuddly and wanting to sit on her lap.  They read a book about a little girl out in the rain and then played with a little people playground set.  He did a nice job trying to copy words and sounds.  Kinda wishing he had gone back to sleep after Iz came home from school, though, as he has been extra cranky all afternoon......

Thursday, May 18, 2017

The return of walks and parks!

We were starting to think it would never happen but the weather has finally decided to behave a bit and we are getting in walks and playtime at the park again :)  This years school schedule makes it a bit harder because S gets home so much later than he used to but the crockpot helps with that ;)  I tossed in the ingredients for cheesy sausage and potato soup after lunch and then when S finally came home, we headed off for a long walk with Mia and then a little park time before heading home again.

The kids wanted to stay forever but it is still a school night ;)  We headed home and they did their chores super fast while I added the last few ingredients to the soup and then we sat down to eat.  Baby W isn't very good with his spoon  yet so we've been trying to give him more opportunities to try.  This soup is more like gravy than broth so its a good one to practice with :)

We stripped him down to just a diaper thinking he'd get pretty messy but he stayed surprisingly clean!  He was trying so hard to use his spoon and not mess up but he did eventually resort to fingers and drinking from the bowl ;)

I was worried that we had stayed too long at the park and wouldn't get to bed on time but dinner, meds, and bath were all finished on time and everyone fell asleep fairly quickly

Wednesday, May 17, 2017

The "new" slide is a hit!

Last summer Mr. Piper built the kids a playscape out of reclaimed materials.  Wood being thrown out, metal being scrapped (he is a welder so he took the scrap metal and cut/welded them into brackets), etc.  For the longest time, it has been just the platform and a couple swings because the slide we had taken from our old swingset disappeared somewhere along the way and we've been keeping an eye out for  a free (or cheap) replacement.  Mr. Piper finally find someone selling just the slide and hardware instead of an entire used swingset and so now the kids have a slide and as soon as he adds onto the existing swingset, more swings and accessories.  Its been up for about a week now and they love it so much--even W goes down it whenever he can :)

Tuesday, May 16, 2017

Let's take physical therapy outside!

The wind was a bit chilly today but overall it was pretty nice so we were outside this morning playing.  I had intended to bring W inside before the physical therapist showed up to get him ready but she came early and we just stayed out for therapy.  He LOVED it.  They played on the swingset and slide, she had toys to ride on outside (he doesn't even like to go near the ride on toys in the house but he climbed right on and pushed himself around on the patio), they did a balance beam (piece of wooden board flat on the ground :p).  He had fun and was much more cooperative than he's ever been so we are going to meet at a local park next week.  If the weather is iffy, that particular park has an indoor nature area we can visit instead and Miss C says there are activities and things he can do to get his PT in.  Once all the kids are out of school, we will meet at parks whenever we can so they will all have something to do while he does his PT.

After picking Iz up at school, we went to her PT as well and she is doing awesome :)  She's not quite there yet, still working on tone and muscle control, but she has made so much improvement and is trying so hard!

Monday, May 15, 2017

Let's try speech again, shall we?

Baby W had his first session with the educator today, Miss S.  They played with toys and it was basically a get to know you session.  One of the downsides to having multiple therapies is the fact that there is often toy crossover :p  Miss S was trying to get W to play with a toy she brought and he kept arguing on how to do things--he wanted to do it the way he'd done it the last time he played with the toy but Miss S was asking him to do it a different way. He was so frustrated so I told her how he'd played with it before and why (working on crossing the midline and he was frustrated putting the shapes in the shaped holes because his control isn't as good when he crosses the midline so Miss M had him putting toys in the "exit" hole) and Miss S was able to switch tactics and get him to do a mix of "her" way and "his" way and that made him happy.

After the Busy Little B came home, off we went to speech.  You may remember last week was a bit of a disaster--the session ended early because he wasn't participating and then he cried all the way home (and was sick the next day!).  This session was so much better.  He was excited to see Miss A and tell her all about his birthday--they had a birthday snack together and played games and he had a great time with her :)

Sunday, May 14, 2017

Happy Birthday!

Hard to believe my Busy Little B turned 8 this year!  He was so excited about his birthday and was counting down the days for the last week LOL  We tried to make the day all about his favorites so we started the day with homemade pancakes.  After lunch we hit the road--he chose a local museum for his birthday outing.  We've been there so many times, we can walk through really fast because they read all the plaques, done all of the activities, and studied it all multiple times.  They still love going, though.  They have favorites exhibits and will glance at the others as we walk by and then spend a good amount of time doing their favorite things.  We always have to visit the old courtroom and get in the witness box:

And its a big open area so a little dancing or spinning usually happens ;)

The one we always spend the most time at is the gas station room--lots of old pumps and signs and cans and best of all a toy car they can "work" on :)

After the museum, we went to the Dollar Tree--its the only thing B asked for as a present LOL  He loves that store so much.  He had been saving for a while to go shopping there plus I bought him a Yo-kae figure (eight bucks at the regular store, a dollar at the dollar tree!) and Iz got him a Yo-kai plushie.  Kid was so happy.

We made his very favorite foods for dinner--hot dogs, mac and cheese, fries, and broccoli.  He wanted a salad, too, but didn't have room after all the other food :p  We went to the park to play and there were a ton of kids there so he had a blast running around with them.  No pictures of my oldest three because of the other kids but I did capture W's trip on the slide:

We ended the day with an ice cream cone at McDonalds

Saturday, May 13, 2017

It was a beautiful day!

We finally had some gorgeous weather so I told the kids if they got all their chores done, we'd go to the zoo.  Guess who got their chores done?

Before we moved, we were about an hour drive from the local zoo so whenever we went, we planned to stay there for hours and see as much zoo as we could because it would be a while before we came back.  So we would either bring food/drink  or occasionally get something there.  Now, though, we are just a few minutes away so we can stop in whenever we want, even if its just half an hour to walk about a bit.  The kids are still in "must be there all day" mode and they asked me so many times for snacks and drinks I finally told them that if one more person asks me to buy them something, I was taking them all home :p  If they are so hungry and thirsty that they just have to have something right now (even though we had eaten lunch right before we left and had been all of an hour since we'd arrived), we can just go home and have a snack and end our trip for the day.  Yeah, they suddenly were no longer hungry, we spent another thirty minutes at the zoo and then another thirty at the natural history museum, and then headed for home because they were closing :p  We have a yearly pass so the zoo and museum can be free and fun things to do--kinda defeats the purpose if I'm spending a ton on stuff while there!

Why couldn't we have to day off?

You would think after all the sickness and all our cancellations of school and therapies, I'd be rested and all but nope, I just wanted to go back to bed and call it a day--we may have been home, but it was not restful for me :p  But, alas, Miss Iz had a first-thing-in-the-morning appointment with her therapist so off we went as soon as S was on the bus to see Miss J.  Since Iz started her latest anxiety medications, sessions with Miss J are so much more helpful and productive because calming down the anxiety seems to have given Iz the ability to verbalize what is going on in her head so they can actually work on strategies to help her get and stay calm and language to use to get other's to understand how she's feeling.  She even checked herself in--she hasn't spoken to the front desk staff in probably a year but she marched right up, told them her name and who she was there to see, and then marched herself back to the waiting area :)  Now if only we could figure out how to nip the sudden emergence of oppositional defiance in the bud.....

Friday, May 12, 2017

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 :\

Thursday, May 11, 2017

UH OH continues

Iz still had a fever but B was clear--not clear enough to go to school since he hadn't hit the 24 hour fever-free mark but at least he was feeling better.  Iz's fever broke finally shortly after she woke up but we still had a day of tissues and cartoons.  Had to cancel W's speech therapy but hopefully he'll be up to OT tomorrow!

Wednesday, May 10, 2017


I guess we know why the Busy Little B had such a hard time last night at speech!  Poor kid was getting sick--all three of my littlest woke up with fevers, runny noses, coughs, sneezes, aches and pains, sore throats.  We were a walking Nyquil Ad :p  We had to call off school and cancel physical therapy for both W and Iz.  Today was a day of tylenol, kleenex, and cartoons :p

Tuesday, May 9, 2017

Speech Day!

And it was a rough one :(  The Busy Little B had speech today (W's is in a couple days) and he was grumpy from the moment he got home from school but he typically perks up when he gets to go back with Miss A.  NOT TODAY.

He just would not participate and would not speak or even look at her, just stared straight ahead :\  So after about fifteen minutes, she brought him back out and we went home early.  Partway home, he started to cry because he wanted to "hang out" with Miss A but it was too late--even if we turned around and went back, B is her last client of the day so once he left, she left, too.

Thursday, May 4, 2017

More OT!

W thought his latest OT session was awesome because he got to do whatever he wanted for most of it :p  She pulled out some toys to keep him occupied while she and I went over the ages and stages worksheet in preparation for the upcoming meeting.  Towards the end she had some more targeted activities but most of the session he got to be in the lead and he loved it :p  She didn't have time to score the sheet but just based on a quick glance, we will most likely be focusing on fine motor and planning skills

Wednesday, May 3, 2017

Errand day

Some days I dread errand days because they can be exhausting--getting everyone in and out of the car, keeping track of kiddos throughout a store, multiple stops, etc.  Today wasn't too bad--W was talking up a storm, naming everything he could and saying hi and bye to everyone :)  His speech is mostly pretty garbled so whenever he's in a naming mood, he says his version and then I reflect back the correct pronunciation, he tries to copy me, I reflect back again, he tries again, however many times he feels like until he moves on to the next word :p  We get some looks LOL

Tuesday, May 2, 2017

Time for physical therapy!

It is almost time for the meeting to re-evaluate progress and goals so we spent some time talking about what I'd like the updated goals to be.  I kinda hate this question because I've learned that those "normal" things with my other kids weren't so normal after all so I have NO IDEA where W should be or what he should be able to do.  Its really hard for me to pinpoint a goal when I don't know what he should be able to do at this age :p  And I've been telling all the therapists that and they still want to know what I want to work on.  Um, how about whatever you say we should work on?  :P

She's been trying to get W to stand on one leg to work on balance but he doesn't really want to so today she brought a ball and we worked on getting him to kick it.  He always wants to grab it with his hands so I held them and that made him use his feet.  His kick is more of a teensy tiny flick of his foot rather than a full on kick but its a start!

In the afternoon, Miss Iz had her physical therapy and her PT told her how awesome she's doing--she is picking up on her exercises pretty fast and making some good progress :)

Monday, May 1, 2017

Speech day!

Speech day started out with some chores around the house to get everything that wasn't finished the night before tidied up.  I had the world's cutest helper:

Unfortunately, cute doesn't always translate into useful and he created about eleventy bajillion extra jobs for me to do as he wandered around unloading the recycling bin onto my floor, dumping out toys, scattering shoes about my house, and so on ;)

It was one of those days where the SLP was arriving later than normal so we had to go pick Iz up at preschool first.  I kept them outside to play so they wouldn't mess up the house before the SLP arrived LOL

It was an okay session--it is harder when Iz is there because she wants the SLP's attention on herself or she wants to "help" W (IE: do it all for him).  She and I have been working on using her words more instead of having a meltdown so she was able to ask the SLP to play with whatever W was doing after he was done and when the SLP let her, it helped to make the session go more smoothly.

After B got home to school, we took him to his speech therapy at the therapy center but his session did not go as well :\  He was upset and so refused to speak and we ended up going home early--he cried most of the way home because he decided (too late) that he really did want to spend some time with Miss A :(

Saturday, April 29, 2017

EEG results are in

And it was perfectly normal.  Which is good because hey, normal! But bad because we still have no definitive answers on why he has periods of extreme instability :\  Neuro is thinking migraines but there's not really anything at this age that will tell us yay or nay because he can't tell us about it so its all a guessing game.  I hate health guessing games :p

Tuesday, April 25, 2017

Friday was EEG time!

Friday W had a sleep deprived EEG.  That was not fun to prepare for :p  Had to get four hours less sleep the night before--I did not want to get up at 3am to wake him up and keep him awake until our 1:30 pm appointment so he and I stayed up late together.  He did well the first few hours but at three hours down, one to go, he kept trying to crawl into my lap and sleep

I dug out some toys we haven't played with in a while and that got us a brief burst of energy

But soon, I caught him sneaking a pillow case and baby blanket out of my clean laundry and attempting to make a bed on the floor for himself

Luckily for him, we were almost at our four hours and were able to head upstairs to get ready for bed and he got to sleep :p

The next day he had to skip his naps as well and gee, was that ever fun as well.  We ran errands so the constant moving about helped but if places were more than ten minutes apart he was fighting to sleep in the car and we had to keep jiggling him and trying to engage him to stay awake.

Finally, it was time!  We got all checked in and they brought us upstairs......and we had to wait in another waiting room :p  It wasn't so bad, though, because we were on the second floor and there were lots of windows so he could look around instead of trying to crawl into my lap and sleep again. He couldn't decide which set of windows was the best to look out of so he did a lot of back and forth :p

Finally, it was time to go to his room.  He did awesome getting hooked up--stayed pretty calm and played with toys while they got the leads measured out and attached.  Once he was all hooked up, we moved to a rocking chair and I held him while rocking so he could finally nap and then he fought sleep for a long time :p  But he finally dropped off and slept hard until it was time for them to wake him for the next segment of the EEG.  OH MY GOODNESS.  The screaming!  The fighting!  He was so mad they woke him up and screamed his displeasure for a long long time. But finally he calmed down and looked tired and miserable :(

A few minutes after this they unhooked him and washed his hair and we headed home but he never did sleep again until bedtime!

They said 1-2 weeks to get the results

Monday, April 24, 2017

Time for OT!

W was so impatient for Miss M to arrive!  She was running a little bit late and he spent the time dancing in front of the door peeking out the window asking "now? now?"  As soon as she appeared, he was just chattering up a storm and trying to drag her into the house and to the living room where they have their sessions :p  He did fairly well today--he was cooperative and willing to try some new stuff that made him nervous.  We are starting to talk goals again--his next meeting is in a few weeks and we have to redo his paperwork.  In some ways, I hate it when they ask me what my goals are.  Despite him being my fourth, I'm not always sure what is age appropriate because none of my kids really followed the "norms".  Please just tell me what my kid needs to work on and we'll make that the goal!

Saturday, April 22, 2017

A prized possession

With the five year anniversary of Iz's surgery a few days behind us, I find myself tripping down memory lane so I wouldn't be surprised if a few "lookback" posts make their way onto the blog!  Tonight I'm thinking about one of her most prized possessions--the hand stitched baby blanket the lovely volunteers at CHM made.  I'm not sure if it was a PICU thing or a surgery thing but one of our nurses said they try to have something for every kid to take home and make their stay not so scary.  Hers is covered in zoo animals and she loved looking at it and touching all the animals on it.  Five years later, she still wants me to get it out when she is ill so she can cuddle with it :)  It spends most of its time folded up in the closet to keep it nice so she can have it when she's all grown up but it still sees a lot of cuddle time during the winter when sickness hits!