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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

UH OH!

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 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!