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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 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 ;)