Sunday Fun

We finally had a couple nights with decreased allergy issues meaning a certain little boy actually got several hours of good sleep.  Today Junior was full of energy and wanted to do an Easter craft. 
There are still so many germs around that it will be at least a few more weeks before church is an option.  On Sundays Junior looks forward to our own little Sunday school time followed by craft time.  Today he wanted to paint eggs. 
This is one of his favorite painting activities and we do it for nearly every holiday.  Egg shapes, paint, and a bunch of various textured balls and he was ready to paint. 
He loved shaking the tub so the balls rolled around and left neat patterns on the eggs.  I am so happy to see not just his smile back but his giant full face smile. 

He had me laughing when I was using his lift(personal roller coaster) to move him from his stander to his chair. He pushed his head back then moved it back and forth until the back of the sling slid down and he could see better.  Then he burst into giggles and thought he was sooooo funny.
Finding the joy in every day.  

 A little relaxing and he decided he wanted to watch Despicable Me.  One of the very few animated movies that he thinks are cool even when you are a big guy.  The minions always make him giggle.

We have a busy week ahead but plan to find some time for decorating eggs and other Easter fun. Junior is hoping his glasses will come in this week.  He wants to wear his glasses since they help him quite a bit(he is near sighted and has an astigmatism) but his current ones are just too small and after a short time they get very uncomfortable.  

Messy Fun

This afternoon Abigail got out of school early and Junior loved having her hang out and do some activities.  They started with painting and of course goofing around. 
  

Then on to some foam soap fun. 

     

 

Early yesterday morning Junior woke up having a seizure and needed his emergency meds.  He is still a bit tired today but seems to be recovering well.  It has only be a couple weeks since his last seizure so he may be getting sick.  Time will tell. 

Allergies

The weather has warmed up quickly and everything is suddenly in bloom.  Lots and lots of pollen which is making Junior's allergies very bad.  A chat with his doctor and we now have a plan that is helping but the poor guy still has puffy eyes and lots of congestion.

Being on his vent a few extra hours a day is helping quite a bit.  

 Abby came over yesterday evening and Junior enjoyed reading the Hardy Boys and rocking out to the Beach Boys.

 

 This morning he was very upset with me when I told him it was treatment time.  He suddenly decided he needed to go back to sleep.

 After treatment time this morning Junior got his haircut which he thought was great. 

I heard back from Junior's doctor regarding the sleep study and his co2 was indeed high but everything else looks good.  Adjustments to his vent and some increased oxygen at night should take care of things. 

Sleep Study

Last night Junior had a sleep study to check his vent settings.  He was very upset when we were getting ready to go but once we arrived he did great. 
He decided to take a quick nap while we were getting checked in.

 Then a little I Love Lucy and Andy Griffith to wind down and get ready to go to sleep.

Then it was time to get all wired up and go to sleep.  Junior slept better then expected and they were able to get the information they needed.  We will talk to the doctor in a few days to discuss the results and what adjustments need to be made.  His co2 levels are elevated while sleeping so that will need to be looked at by the doctor.

A Visit From the Hated Seizure Monster

We made it nearly 19 amazing weeks without a seizure and are thankful for this huge blessing. 

On Thursday Junior had an eye appointment which went really well.
Goofy kid waiting to see the doctor.

  His functional vision has improved quite a bit with the decrease in seizure activity.  Less frustration for him since he isn't having to fight to keep his eyes focused on things.  Junior's vision is pretty good but the muscles are weak and he has strabismus(eye bouncing/twitching) so staying focused on things has always been something he struggles with especially when tired.  I had noticed a definite improvement so it was great to have the doctor verify that it is indeed better.   He is nearsighted so they fitted him for new glasses which should be a big help.  During the appointment they needed to dilate his eyes.  I noticed not long after the dilation that Junior was making faces and acting odd.  On the way home a seizure hit him which I am sure was triggered by the dilation.  It reminded me how thankful we are for the trach.  Junior stayed stable and I was able to get him home and onto his vent without issue.  Poor kid it really took it out of him and he slept for over 24 hours. 
On his vent recovering from the seizure.

Saturday Junior was finally more awake and wanting to watch tv.  He decided CHiPs and NCIS were his shows for the day.

He is still tired and not quite himself but has improved.  Please keep him in your prayers tomorrow evening when he has a sleep study. 

Smiles

The last couple days have been so much better for Junior.  Lots of smiles, giggles, and he has even managed to vocalize over his trach a few times(without his talking valve even on).

Saturday the weather was changing so Junior had some asthma issues.  He enjoyed some tv and I had a chance to make him a few fireman trach pads(next to Spider-man fireman stuff is Junior's favorite).



Sunday marked an amazing 18 weeks since Junior's last seizure.  With such a long time between seizures we are seeing increased focus and much quicker response time when communicating and using eye gaze.  He doesn't have to work as hard to stay focused on things so his frustration level is also greatly reduced.

Sunday afternoon after exercise time Junior had fun during stander time.  He wanted his foam soap and his switch so he could play with his fart blaster.
(These tank tops are snug so make him look like he instantly gained 10 lbs.  If anyone is looking for something to wear under a brace these are awesome.  A friend sent us some to use and they are perfect.  No seams and they are very stretchy so stay snug and do not wrinkle under the brace.  Junior is so much more comfortable in them and is tolerating the brace for much longer.) 

 

 Finally a picture of Junior with his beautiful quilt from Love Quilts.  He loves it. 

 Yesterday Junior had a pulmonology appointment and he did great.  He was so excited when I told him we were picking up Abby from school and she was going along.   We discussed everything with his doctor and she said he looks really good.  He is putting on weight too rapidly so I will be cutting back on his calories.  The trach has improved his breathing so much that his body is not needing near the energy/calories just to breathe.  The big issue is that when Junior gains weight he gains first in his face and chest which can be a problem for a child who has chronic lung disease.  He will have a sleep study next week to check his vent settings and be sure everything is as it should be.  Also a bunch of labs in the next couple weeks ensure all is well.

Junior did not sleep well last night so I was expecting a cranky, sleepy day.  What a surprise when he woke up in a great mood and full of energy.  He has been one super happy guy all day, full of smiles and giggles.  The weather is beautiful so we went out for a walk this morning.  He enjoyed playing in his kinetic sand during stander time then treatment and tv time.

I can always tell he is feeling better when he wants to watch a non black and white show.  Today he was watching Flash Point and totally into it. Loves his action shows. 

 Riding to his chair on his personal roller coaster.

6 Months With the Trach and a Very Special Gift

Hard to believe it has been 6 months since Junior had his trach placed. As difficult and scary as it was to take that step we see daily that it was the right thing for Junior. A whole new journey for us which brings with it new challenges but also many, many blessings. Seeing Junior able to breathe without struggling is at the top of that list. We had no idea how much energy it was taking him to breathe until after the trach when he gained 10 lbs and 2 inches within a couple months. Also the lack of stress on his body, now that he can breathe, has affected his seizure activity. Today is 121 days seizure free, that is over 17 weeks, one third of a year. God is so good, thanking Him for each new day and not taking one moment for granted.

Yesterday evening Abigail came over and the kids watched the dvd from Joni and Friends Family Retreat last summer.  They are counting down the days until June and Joni camp 2015.

This afternoon a box arrived on our porch.  We opened it to discover the most amazing quilt inside.  This gorgeous work of art was given to Junior by Love Quilts.  The back is Spider-man and each square has a cross stitched picture on it.  The theme is rescue workers and because Junior's favorite is firefighting that is what the majority are.  We loved looking at each square and reading the name of the person who stitched it as well as the state they are from.  Thank you so very much, the quilt couldn't be more perfect for Junior. The pictures don't do it justice.
(I will be adding pictures of Junior with his quilt tonight or tomorrow.  He is having a rough day so is sleeping at the  moment).

For more information about Love Quilts click HERE

Beads Of Courage

Junior loves his Beads of Courage and was so excited when his latest package arrived in the mail.  During his stander time Junior used his ipad to direct me in how he wanted them strung. He did a great job and of course had to wear his other beads while he worked.  For those who have kids with medical issues be sure to check out Beads of Courage and see if your hospital has a program.  If not there is a Beads from a distance program which is what Junior is part of.  Such a fabulous program and allows your child to tell there medical story in a very special way, each bead tells a story.

In his lift riding to his stander tonight. 

Just Relaxing

After exercise and stander time Junior decided he needed to relax under his solar system. 

 

He then decided he needed his switch and Spidey light.  Junior was also listening to I Love Lucy, he likes to multi task. 

 A couple much better days.  He is needing extra sleep but now that the antibiotics are finished he is not having the frequent tummy cramps and energy is coming back. Much happier guy and oxygen need has also decreased. 
Oh and a little side note tomorrow makes 17 weeks since his last seizure and if we can make it to Tuesday it will have been 121 days or approximately one third of a year since his last seizure. 

I love this picture, he caught me trying to get a quick pic of him playing with his solar system.

Ups and Downs

The weather has been constantly changing which makes for a lot of ups and downs for Junior.  Yesterday he was coughing nearly non stop at times along with lots of tears but then after a nap was back to his happy self.  You never would have known he had been struggling and he even wanted to paint.  He thought we needed to make fireworks. 

Today started off a bit bumpy again but after a trach change and a little extra vent time he is back to smiles. 

Earlier this week I stopped at the pool store to pick up a jumbo pool noodle(Junior is now too long for his shower chair and we needed the noodle to support his legs so we can continue to use the current chair until his new one gets here).  While there I spotted some rectangular shaped "noodles".  They are foam with a rubber coating and feel more like memory foam.  Perfect for positioning help.  I made a cover for them and they work great for Junior. 

My sister and I both live in apartments so growing things to eat isn't really a workable option.  With the cost of food we both wanted to try gardening and recently a community garden opened in our town.  You can rent raised beds for the year and then have a place to grow your own food.  There isn't a lot of space but we were so excited to get started and hopefully this will save some money on the grocery bill.  We did our first planting this week and put in things that can grow this time of year(lettuce, onions, chard, chives, kale). 

16 Weeks

16 Weeks, 112 Days, about 4 Months, that is how long it has been since Junior's last seizure.  Something I never, ever considered being able to write.  In our world this is an absolute miracle. 

To put this in perspective and show how amazing this is for Junior consider that at one point he was having 15-30 seizure each day and we were just thankful to go a few hours without a seizure. 
For the past few years his typical time between big seizures was 4-6 weeks when he was healthy and doing well.  Much more frequent when he was ill. His all time record for being seizure free was 12 weeks.  He has now crushed that record by 4 weeks.  During this 16 weeks he has also had a few illnesses, several days with fevers, and been on a round of antibiotics.  All things which would typically trigger seizures and cause him to have multiple extra seizures. 
All we can say is wow, and thank God for this miracle. 

Happy Valentines Day

Happy Valentines Day!!! I hope everyone had a beautiful day filled with love. 

Last night my sister and Abigail stopped by and brought Junior balloons and some beautiful flowers for me.  

Junior is doing quite a bit better and even spent some time in his stander.  He is still needing some extra vent time and dealing with frequent stomach cramps from the antibiotics but is also more energetic and happy(in between the cramps). 
Rock star jamming with his DJ mat during stander time.  The pillow is because it is soooo loud that we needed to muffled the speaker some. 

Junior got this super cool Spider-man lamp for Valentines and I spent some time today getting it switch adapted and set up for him.  It came with a wall sticker so it looks like Spidey's head is breaking through the wall.  I put the wall sticker on an oval painting canvas and then mounted the lamp on top.  His tripod a couple clamps to attach it and it was all set.  He could play with it tonight in his bed while watching a movie.  He totally loves it and it is awesome to now have a toy that works wherever he is even in places where it is hard to set up other switch adapted toys. 

 I love the serious face while checking out his new lamp for the first time and then the grin when he pressed the switch and Spidey's face lit up. 

 Having a great time and you can tell I caught him mid giggle in the bottom pic.