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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 their 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!








Friday, April 21, 2017

Speech Day!

Normally W has speech while Miss Iz is in preschool but our SLP has been having some scheduling upheaval this month and today she came after Iz got home.  Iz wants to be involved, wants to play with the toys and puzzles, wants to "help" W by doing things for him so he won't get frustrated.  Normal little kid stuff.  The SLP never says anything but her body language screams her irritation.  I get it, I do, she has a job to do and Iz's interference hinders that.  I try to keep Iz away as much as possible but I find myself feeling irritated right back because she changed the schedule, not I, and she knows coming in that Iz will be there and previous experience tells us Iz just wants to be included.  I try to have things for Iz to do but the other therapists include Iz in their plans if they know she'll be home and she's having a hard time understanding why the SLP doesn't want her there :\

Thursday, April 20, 2017

Its a movie theater!

Tuesday is physical therapy day--W has it at home then I pick Iz up from preschool and we have a 45 minute gap until her PT at the rehab center.  Not enough time to go home, really, so we usually run an errand (today's was getting gas). It is unusual for me to run inside and get stuff but it was so worth it Tuesday!

I was super tired and stopped for a 99cent coffee (and this gas station has pretty good brewed coffee) and picked up a box of fresh popcorn for Iz, a cheesestick for W, and a snapple for Iz because my mom used to get them for me when I was little and Iz had never had one.  So we get our stuff and start our drive over to the rehab center--Iz says "its like I'm at the movies with my popcorn and my drink!"  I tell her that the windshield must be the movie screen.  She and I start making up movies based on what we see out the windshield.  There's an armored truck so I say maybe its an action film about a bank heist and she throws in that the truck will get into a big accident because action movies like to blow stuff up tongue-out  We spot a couple walking together and decide they are starring in a romance.  A school bus goes by and Iz declares its a kid movie about preschool adventures.  And on and on.  We spent the whole ride making up movie plots and it was so much fun to see how her little mind works and how quickly she can come up with stories for a few seconds seen out the window!

Wednesday, April 19, 2017

It has been five years

Five years ago today, I handed my daughter over to her medical team.






They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way.  She came back to us a maze of tubes and lines and machines and medicine.  She was sedated and on a ventilator and it was such a long long night waiting for her to wake up. 

Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath.  She was still a maze of tubes and wires and had to be sedated often to keep her calm


By April 22nd, she was spending more time awake and even gave me a teensy tiny smile

I spent a lot of time reading to her, particularly Winnie the Pooh, because it helped her stay calm and drift off to sleep.


Finally, on April 23rd, we said goodbye to the maze!  She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable





On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got





By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!



The 25th was also an extra special day because we were finally discharged from ICU and went home!  She was so very happy to be back in her own bed


She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery





We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about



Before her surgery, she had pretty much stopped growing.  Just breathing took so much energy there wasn't much left over for eating.  After surgery, though?  It was like having a newborn!  She nursed alllllllll the time and being asked if she was ready to eat got the best reaction


By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)


Five weeks and one day after surgery, her scars were looking really good! 





Today, five years later, she still shows off her scars to people :)  She is at cardiologist visits every two years and has no restrictions.  Oh, how far we have come!


PT day!

W was SO EXCITED to see Miss C today!  He could not wait for her to come inside and play with him....and then she came in and was wearing her glasses and he hid from her LOL  She has only worn her glasses once before and he didn't recognize her and was super nervous. I think he forgot what she looked like with glasses but the more she talked, the more he relaxed--took him a bit to associate her voice with the strange lady with glasses ;)

He was fairly focused on what she wanted him to do, even though he did try his best to outsmart her a few times to do what he wanted to do.  But eventually he just went and got her shoes and told her "bye" and decided he was done with the requests to show off his jumping and standing on one foot skills :p  Soon it will be nice enough out that we can start going to the park for sessions (which will make summer sessions when all kids are home so much easier since they can busy themselves playing while W works!)

Sunday, April 16, 2017

Happy Easter!


This week's OT update

W was a little more focused in OT but not by much :p  One of his activities was very similar to one he did in PT (climb up and over a foot stool and then put a shape into the shape sorter) so he didn't even wait for Miss M to show him what to do--you could see his little mind going "I got this!"  Miss M made it a bit more challenging with two different stools with two different heights so he had to do it like stairs and then a big step down to get to the toy.

She worked on getting him to cross the midline, an activity that still makes him grumpy :p  She also had him getting down on his stomach and playing with the toys, a move he carried over to bathtime--he kept laying on his tummy in the tub and calling "looh!" (look) to me.  And then clapped for himself LOL

One activity he hates but we keep trying is swinging in the blanket.  He was a big NO at the beginning of the session but at the end he stood in the blanket and let us swing him and then he sat down and giggled and when the song was over, he asked us to do it again.  So we swung him again but he decided he was done halfway through the song :p  But, hey, the fact that he asked to go again was good!

Saturday, April 15, 2017

The Big Neurology Appointment

A few months back Baby W's pediatrician referred him over to the same neurologist B and Iz see but her schedule is always so full it was a wait to get a new patient appointment with her.  The main reason he was going to see her is his balance--he will be fine and really coordinated and then he'll go through periods, at least a few times a week, where he falls constantly, walks into things, even falls over while sitting or standing still.  B and Iz were like that as well but they also had moments where they completely blanked out and once those blank moments were identified as absence seizures and they went on medicine, their balance and coordination improved tremendously. 

W doesn't have those other symptoms that would suggest seizures.  However, because two siblings suffer from seizures, W is going to do a sleep deprived two hour EEG (and won't it be fun to keep him awake!) just to see if there's anything going on.  For both B and Iz, their short EEGs (20 minutes for them) showed issues immediately and their 24 hour EEGs confirmed that they had active spots 24/7.  The seizure meds calm those spots down and the absence seizures and other symptoms improved. 

If the EEG is fine and all of the lab work she ordered for W are fine, it will rule out some possible causes of balance issues.  She thinks, based on his symptoms and the timing of his "episodes" that he may possibly be having pain-free migraine activity.  I suffer from migraines and apparently that puts all the kids at a 50% risk of developing them as well.  Since he has been injuring himself, she is thinking we might want to try a migraine medication and if it stops or greatly reduces his "episodes" that would be a good indication that he having migraine activity.  We'll get through all the testing first before we make any decisions.

Friday, April 14, 2017

Physical Therapy was a whirlwind of distraction

Apparently Baby W's distractability from speech carried over to the next day because he was all over the place at PT, too!  His physical therapist is very go with the flow, though, so she just kept pulling stuff out of her bag to see if anything interested him enough to stick with it.  Nothing did, really, so they just ran through a bunch of activities and exercises and we talked about some of the things he's been doing.  One of the activities she does with him is to get him to get up on his tip toes to reach for things to work on those muscles for balance--however, he has started toe walking so she's thinking we should back off getting him on his toes to see if he'll stop the toe walking. 

Thursday, April 13, 2017

Speech came early this week!

Usually B has speech and then two days later W has speech but W's SLP had to reschedule so both boys had speech on the same day :)

W was really spacey during his session--he couldn't focus on anything and his SLP is the type to want to completely finish an activity before she moves on and there are days that he just won't be redirected back to what she has pulled out and she seems frustrated.  He's one, though, and its gonna happen, you know?  On days like this, he gets more done if the therapist just rolls with it and does short bursts of each activity to keep up with his shortened attention span.  When she just keeps trying to bring him back to her chosen activity, he just stops participating.

My Busy Little B had a good session with his SLP.  He went up on his Focalin a couple months ago and ever since he's just had really really great sessions.  Not just on focusing on what he's doing and participating but in being able to recall and tell me about what he did.  For years, any time you asked him about school or therapy, he just shrugged and said "I don't know" or "I don't remember" so his willingness and ability to tell me all about it is awesome :D

Wednesday, April 12, 2017

Sickness has hit us again

***oops!! I forgot to publish this last week :p***

This was supposed to be the first week of April OT update but that didn't happen!  We are sick.  Again. 

Baby W just has some sniffles but the Busy Little B spiked a fever and had to stay home from school and with an active fever in the house OT had to cancel.  Everybody else has the sniffles and a few sore throats so B is the only one with the fever. Luckily, he's my shortest-illness-ever kid so his fever broke fairly early in the day and he'll probably be right back at school tomorrow :p

Friday, April 7, 2017

First week of April Speech update :)

W decided to show off his naming skills to the SLP today!  He's been really into naming everything lately--he says it in his not-quite-right pronunciation and then I repeat it back with the correct pronunciation, then he tries again and gets closer to how it should sound :p 

He was all over the place during reading time and puzzle time but he settled down when she got out the dollhouse and car and he paid attention and played and practiced his words :)

Thursday, April 6, 2017

Dare I hope our walks are going to happen more and more often?

It was such a beautiful day we went to the park to walk after all the kids got home from school.  Its harder to do this year because S gets home an hour and a half after the Busy Little B (they used to get home fairly close together).  Once S gets home, we are usually doing chores, homework, cooking dinner, bedtime, so its hard to fit trips to the park in during the day but it was so nice we made it happen :p

Once B was home, I cooked dinner most of the way and then popped in it the oven (turned off, just wanted it to stay warm) when S got home.  We get to the park and I realize I forgot the stroller!  We had Mia with us and she needed a walk to calm her down and burn some energy so we decided to brave it and let W walk with us.  We only went about 3/4 of a mile total (we usually do at least two) and poor W was dragging his feet at the end but he did indeed walk the whole way and Mia was so happy to be out with us that she didn't care we "quit" early ;)





Our walk ended at the playground and W was so very brave.  He's been working hard at doing stairs properly and he very carefully did a short set on his own at the playground, holding the rail, making sure his feet were firmly on the tread before moving to the next stair, and then he went down the curly slide by himself.  His OT at the hospital had been working on going down a slide properly before we lost our time slot and he apparently remembered all her lessons because he did it just right :)  He ran in a big loop, stairs, slide, stairs, slide, etc and every third or fourth slide would run over to me clapping and he'd babble very excitedly all about it before he ran off to do it again :)





Once we got home, the kids did their chores while I pulled dinner out and finished it up.  Our tilapia soup simmered on the stove while I finished up some cleaning and we ate.  Oddly enough, we sat down to eat and finished sooner than we normally would!  Doing most of the cooking before S got home really made up for the time we spent at the park :p  Kids got a half hour of playtime before bed even!


Wednesday, April 5, 2017

Time to mow the lawn!

We have been anxiously awaiting our explosion of green and it is finally here!  One thing we noticed last  year is that the move from the browns and grays of winter to the misting of green of spring happens very very quickly.  One day its brown, the next it is green.  Its a bit jarring how quickly it happens but it is also kind of thrilling.  It doesn't all happen at once, of course, and we've been seeing blades of green grass starting to come up for a short time now but those bits of green are well hidden in the brown and then finally, there is enough that you really see the green and it has finally come :)  The day the green came back was fairly pleasant, too, so we spent some time outside.  W had to practice running and then he and my Busy Little B mowed the lawn ;)


And I know the pictures still look fairly drab and brown--the closeup view is not that impressive but when you look out over the yards, you can really see the green popping out instead of brown :) 

Tuesday, April 4, 2017

Week One of April, PT update

W was just not in the mood today--he ran to greet Miss C and even called out play! and ball! when he saw her but then just shut down and would not go near her and clung to my legs.  Sometimes he gets a little anxious and is clingy and then relaxes and starts to participate but he was just not having it today.  After multiple failed attempts to get him off of me and out to play, I realized the problem--Miss C was wearing her glasses!  W has never seen her in glasses, always contacts.  She took her glasses off and he runs over to her almost immediately, points at her and shouts "kiss!" (his version of her name).  HA! We had a chuckle over it and she was able to slip her glasses back on and they ran through some exercises and tasks.  He still wasn't the most cooperative but at least he would go near her again :p

In the afternoon it was time for Miss Iz to have her physical therapy.  She had a really great session--she is really focusing and listening and doing her best to follow instructions.  Her PT was so pleased with how quickly she is picking things up :)

We stopped at Panera Bread afterwards (its free bagel month for us!) to celebrate a good session for Miss Iz.  She split her bagel with her baby brother and talked up a storm the whole time we were there ;)


Friday, March 31, 2017

Swallow Study

Earlier this week W had his swallow study.  When I scheduled it I didn't realize it was a no school day so the whole crew came with us!  We couldn't find a parking spot at the Children's Hospital so we ended up parking the next hospital over and walking.  It wasn't too bad outside so they enjoyed the walk.

W was absolutely fine until we got to the room and he saw the tiny hospital gown--perhaps he had flashbacks to last week's ear tube surgery?  The gown was just to slip over his clothes so he didn't dribble barium on his clothes but he didn't care--that thing was NOT going on him.  A nurse helped me get Flailing Baby into the chair and strapped in and we draped the gown over him.  He finally calmed down when he realized they were getting him a drink and he was fine after that.  Unfortunately, he failed the swallow study :\  He had a penetration all the way to his vocal cords very quickly on nectar liquids (his current level of thickening) so we didn't even get to try thins *sigh*.  The speech therapist conducting the swallow study said to keep him on nectar until we hear from GI.

So when GI called, they said that when he took small swallows, he seemed to do fine on the video, that penetration was a big gulp so they want him to use a sippy cup or straw cup with a valve to limit how much liquid comes out at once.  Unfortunately, we have both and he will not drink out of either.  He's stubborn, too--when he decides he's not going to, he will just not drink for days.  So they recommended we got back to using the very thin straws he used to drink out of instead of the bigger ones he was finally agreeing to use :p  We will wait a few months and then do another swallow study and see if he's made any progress but she doesn't feel another round of NMES will be helpful since this last round didn't make much difference for him.  So we wait and continue to thicken. 

Thursday, March 30, 2017

Last OT of March!

Apparently this is W's week to shine in therapy because he has been so focused and has participated beautifully with all of his therapists this week :) 

He and Miss M worked on some fine motor skills first--last week she introduced the motions for twisting a cap off and on and off all week I have been practicing it with him and he just would not do it on his own.  Miss M arrives and he was showing off his ability to twist the cap and make the toy pop out :p  Little stinker.

They did some strength exercises where they affixed little suction cup toys to my freezer and then pulled them off--the harder you push on them, the harder they are to pull back off.  At first, he pushed them on and they barely took any strength to pull back off but by the end, he could push them on hard enough they made popping noises when you pulled them back off.  He thought that was hilarious.

They did some puzzles, too, and he is getting much better at rotating the pieces to go in plus he did a lot of crossing the midline (the reason they were doing puzzles).  At the very end he swung in the blanket--he kept his head out and apparently that was today's key for an enjoyable swing instead of him crying and trying to get out. 

Miss M is going to come up with some activities to help with the resurgence of sensory avoidance that has him stripping every chance he gets again :p

Wednesday, March 29, 2017

Last speech therapy of March :p

Poor W went from super happy to super cranky so he took a little nap before Miss H showed up.  And then she showed up early and he missed the last ten minutes of nap so he was slightly disgruntled at being woken up.  He bounced back quickly, though, and he did an excellent job of attempting to repeats words and sounds.  They read a book, played with a racecar set, and put together puzzles.  He's trying so hard to please her!

Tuesday, March 28, 2017

This week's PT update

Miss C brought her roller skates again today--the last time, W wanted NOTHING to with them but today he was all for strapping them to his shoes and attempting to "skate." She held his hands and he shuffled around and had great fun :)

She's been trying to teach him to hit and catch a ball with a little kiddie plastic bat and ball but he doesn't "get" it.  In his mind, she hits the ball with the bat and he does a little dance, claps, and laughs a lot.

Miss C didn't get to do the other thing she had planned because W went and got the skates back out and tried to put them back on--since its a good activity to help with balance and all, she helped him put them on and they spent the rest of their time shuffling through the house :)

Iz was supposed to have PT this afternoon as well but the scheduler told me one thing and then scheduled it earlier :|  Wouldn't have been so bad but instead of telling me right away, they left us sitting in the waiting room for twenty minutes before telling me.  :\

Sunday, March 26, 2017

Does it still count as homeschooling?

Miss Iz spends so much of her preschool day trapped in her anxieties that she hasn't really been getting much out of it academically.  I mean, she's not missing out on everything, she has learned lots of songs and some of her letters and numbers but the planned academics versus what she is retaining are not matching up.  We picked up a kindergarten curriculum book a while back and a new big box of crayons and she was so excited about it!  We keep them locked in the pantry so no one can take her stuff :p  She likes that she is doing schoolwork a year ahead of all her classmates.

She goes to preschool in the morning, I pick her up, we come home and have lunch, and then she does her worksheets.  Sometimes we sit together, sometimes I do some cleaning in the kitchen so I can help her if she needs me to (she very rarely does).  Right now it is easy stuff, colors and shapes, practicing fine motor skills like tracing, drawing, and cutting, a few words to learn, some counting.  Its starting to get a little more complicated so the number of sheets she does in one day is dwindling but she still thinks it is so much fun.

There are days we don't get to do worksheets because of appointments or errands but we still get some schooling in.  On appointment days she gets to play on a tablet and she almost always choosing the learning apps.  She will practice tracing letters, adding, sight words, math games.  She has a couple of "just for fun" apps but rarely plays them.

Other days she runs errands with me.  The other day we were at the grocery store and she wanted to buy dessert.  She found some whole fruit frozen bars and pointed out how healthy they would be (and she was right--a mix of pureed fruits frozen on a stick).  I asked her how many came in the box and she very seriously examined it until she found the number and was able to tell me what it was (4).  I ask her if it will be enough so she counts out everyone who will eat one (me, you, S, B, one, two, three, four).  What about W? I ask.  She says the bars are too big for him and that I usually let him have a bite or two of mine so we don't need to buy a second box because we would have too many. My boys would have tried to convince me to get two boxes so W could have one and they could have two LOL  She pays attention to how I grocery shop and knew I would not have chosen to buy two boxes so W could have a bar way too big for him :p 

Saturday, March 25, 2017

This week's OT update

Baby W seems to have gotten over his case of Mr. Crankypants and is back to normal toddler meltdowns and power struggles so his OT session went really well.  He has decided he is terrified of Miss M's blanket, though, so getting him to lay or sit down to swing is so hard.  Its great input for him, though, and helps work his muscles so we keep trying to get him back to enjoying it.  Neither of us can figure out why he's suddenly so afraid of it.  He wasn't that fond of it at first but then seemed to like it but now he doesn't even want to touch the blanket.

Miss M brought her pop out tunnel today.  We were laughing at how he would NOT go near that tunnel the first time she brought it and today he was helping her undo all the Velcro straps to open it up and he could hardly wait to zoom right through it.

He did a lot of fine motor work today.  He's been using just his pointer finger on one hand to manipulate things so she was getting him to use both hands and more of his fingers to push and turn and slide things on the toys.  We also built a caterpillar with some pop beads that were pretty tight so he needed help at first to get them on and off but by the end he was doing it on his own.  You could just see his arm muscles flexing trying to get those beads off, though!

Friday, March 24, 2017

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!



Thursday, March 23, 2017

The Day After

The case of Mr. Crankypants W caught during surgery hung around the next day!  He would have stretches where he was in a fairly good mood but every little thing made him lose his tiny mind :\  That sure was fun for his speech therapist!  But they made it through the session and we eventually made it through the day :p  I was awfully glad when he fell asleep early, though ;)

Wednesday, March 22, 2017

Baby W's First Surgery

Yesterday was the Big Day.  Baby W and I got up really early and headed over to the Surgical Tower for a 7am checkin.  He was a little sleepy and slightly grumpy that I didn't feed him before we left but he decided we were having an adventure and was pretty happy to go for a drive and then take a walk in the dark across the parking lot with me :p  He played shy peekaboo with the other people checking in and was happy to walk with the nurse escorting us through the hospital.  And, then, we got on the elevator.

Normally elevators are fun for W but this one was filled with strangers and he completely freaked out.  He's coming into the stranger anxiety phase of toddlerhood and while strangers in a big open room are okay, crammed into an elevator apparently is not :\  That set the tone for the rest of our check in and he fought every step of the way--weight, height, temp, heart check, all of it.  He even fought changing into his tiny set of scrubs.  When he finally started to settle, he held onto me tight and gave the Sad Face to everyone stopping by:







After a while of it just being me and him in our little room, he got up the courage to explore:




Of course he was drawn to the giant glass door :p  He stood there watching everyone in the hall and waving at the other kids he could see.





And then he saw some grownups coming and he ran for it!


Turned out to be the anesthesia team arriving to take him back to the OR.  They brought a little red wagon for him to ride in but he wasn't having it so one of the anesthesiologists sat in a wheel chair and cuddled him.  He hugged her tight but still cried his way back to the OR.  Poor little bug.

Ear tubes took less then ten minutes to go in and then he went to recovery to wake up.  Dr. M said they went in quick and easy and they suctioned out all the fluid still trapped in there. He has some ear drops to use for the next five days and then whenever he gets sick enough to get ear discharge (from fluid draining) but other than that no restrictions.

He came back from recovery shortly after and was sleepy and super clingy but when the nurse brought him milk he downed all eight ounces in just a few minutes and then ate a (dry) bowl of cheerios.  Dad arrived (he did school drop off) right as we were getting ready to be discharged :p  W spent the rest of his day slightly wobbly and with a wicked case of Mr. Crankypants but otherwise was completely normal  :)

Thursday, March 16, 2017

Words, words, and more words!

W has become quite the little chatterbox lately and not just babbling--there are words! Words that I recognize and that go together :p  Between his limited vocabulary and his new found charade skills, he can tell me little stories and memories :)  Of course, to the rest of the world, he is just babbling incoherently ;)

He had speech therapy and the therapist could only pick out a few words here and there and he was getting frustrated that she wasn't understanding him or answering his questions so I spent most of the session translating for her so she would know what he was saying and asking.  He's trying real hard but he's just not quite there yet!  However, I've long been in the habit of repeating back what my kids say because the very first speech therapist we met with, way back when S was not quite two (nine years ago!), told me that one of the best ways to improve speech in little ones is to repeat modeling correct pronunciation and grammar.  Once I figure out what W is trying to say and can echo it back at him properly, he starts to try and copy how I say it and slowly his pronunciation shifts to something more people can understand.  We'll get there eventually :)

Wednesday, March 15, 2017

Again, my day was talking about poop

Of course, the fact that we were seeing GI probably had a lot to do with it :p  Even though Baby W sees GI for reflux and aspirations, we still talk about poop an awful lot.  Pretty sure GIs are just hardwired to talk about it LOL  Baby W has a different GI than Iz so we spent some time with Dr A this time around.

Baby W is officially off Prilosec! WooHoo!  Dr. A lowered his dose last time we were in (Dec 1) and I asked her about doing a trial completely off to see how he did since even on days when he fought and spit and didn't get a dose, he wasn't really spitting up. She said no problem, see how he does so he hasn't taken any in months :)  At first, we had some minor spit up, maybe once or twice a week but its been a few weeks since he's spit up so he has officially outgrown his reflux and the meds are removed from his "currently taking" list.  His reflux was so very severe that we didn't expect him to have such a sudden turnaround.

Scheduling didn't work to get his swallow study before our visit so she can't change his thickening consistency or decide if he needs more NMES therapy.  Swallow Study is March 27th so a couple weeks to go and then she'll either call or email after she gets the results with the game plan.  We go back to see her in 4 months.

Oh, and he was a bit over 22 pounds today and moved up several percentiles on the growth chart :)  He's still below 15th percentile but this time last year he wasn't even on the chart so yay for progress, eh?

Tuesday, March 14, 2017

Ear Check!

Baby W saw the pediatrician for his ear check after the last round of antibiotics.  The ears are still full of fluid. *sigh*  On the bright side, though, there was no infection and he hasn't been showing signs of illness so we were finally able to go ahead and get the vaccinations that were due back in December.  The doctor kept postponing them because he didn't want to give them to W sick.  We did have one clear visit last month but it was the "all clear" visit for the MRI and Doctor M didn't want to do vaccinations and then have W develop a fever or something and then have to cancel the MRI yet again so we decided to do them after the MRI.  W, of course, got sick right after the MRI, though, so it took another month to get to this point :p

*fingers crossed* that we make it to ear tube surgery without more infections!  It would be our luck to have to postpone ear tubes due to another ear infection ;)

Monday, March 13, 2017

App Monday!

I feel like writing about Apps is becoming a thing :p  Three weeks in a row!  And I could probably go once a week for months with all the apps on my phone--perhaps that is a sign I rely too much on them?  Or a sign that at least one part of life is somewhat organized ;)

This week's app is a really simple one but I have used it for years and it can be a lifesaver. Its is Childrens Countdown--visual countdown timer for preschoolers.  I first started using it for my Busy Little B and have continued to use it for Iz.  They both really struggle with transitions and this is an easy way to get them prepared because they can glance at it at any time and get a visual on how much time has passed and how much is remaining.  B also used it a lot to understand taking turns--he can be very impatient, especially before we discovered his seizures, and the visual countdown was an easy way to help get him past the "I WANT IT NOW" mindset.  When the timer is done, it was his turn and he could have whatever it was he was waiting for.  It has also been great for timeouts--it can be hard for them to sit still when they don't have a sense of time passing and this timer solved that problem and helped them calm down and stay calm so they could finish time out and be able to think about why they were sitting there and how they should behave next time.

The app lets you choose minutes and seconds:


You start out with a solid color and as time ticks down, the color disappears and reveals the picture beneath:


You can choose a specific "standard" picture to use every time, let it choose from a set of standard pictures at random so you can get a different picture every time, or you can upload your own photos (useful if you are counting down to a transition--for example, once the timer is done, a picture of your car appears and the child knows they have to leave).  Most of the time we leave it on random because mine enjoy being surprised by a "new" picture:


B and Iz's favorite part of the app comes at the end--when the entire picture is revealed, it spins around and throws confetti and then stops and shows the entire picture standing still:


The free version runs a little ad banner along the bottom but you can also make a one time purchase of 99 cents to get rid of the ads.