Take care of yourself, they will be fine

Some words from Jeremy to me.

Carter and Luke have become obsessed with skiing in the past few weeks.  Their first time was mid-February and since then, they have hit the slopes 10 times, have season passes for next year and their own gear (so do Jeremy and I).  They both learned to ski right way and keep pushing themselves to ski better and on harder slopes.

I have been trying to keep up.  Only skied once back in college
and now several times with the boys (gone with them when we have someone to stay home with Brayden).  I have been skiing pretty well, trying to get my balance and handle it.

But I have had a couple of big spills, getting off the ski lift.  Both times I was so focused on the boys; making sure they got off okay.  Then realized I was delayed in getting up...which then leads to a big spill, the lift stops, etc.  The biggest spill was on the four person lift.  All four of us getting off, I was so focused on Luke that I did not stand up in time, I tried to hop off quickly but my spill took out the entire family and a new ski pole.

When we finally made it down the mountain, Jeremy told me sometimes "You just need to take care of yourself and the boys will be fine".  I was so focused on them and not myself, that the result was not helping them but hurting them.

I think as a mom, and even more so as a mom of 3 and one is special needs, you focus on everyone else's needs.  You think about yourself last.  That is just the way it is, it is just what you do as a mom.  The vast majority of time that works just fine.  But then you realize when you are off, then it makes the whole house off.  The good 'ol, if Mama's not happy, ain't nobody happy.

As the mom, you set the tone of the house.  If I do not take care of myself, am I really helping or hurting my family?  If all of my focus is on them, does it really help them?

Taking care of myself is easier said than done.  There never seems to be enough hours in the day, there is always some need to be met; so without much thought, everyone else comes first.  I automatically become focused on the boys that I don't even realize I am not taking care of myself.

With Brayden in school more this year (and less doctors), I am trying to make time to take care of myself.  Joined a Bible Study (tried a few times in the past without much success in being able to go consistently), trying to workout again (tried Yoga for the first time), making times with friends and making time with Jeremy.  Little bits of time here and there throughout the week.

I will let you know how it goes...I am trying, really trying for first time in years.  Trying to take care of myself, knowing the boys will be fine.

Working on that Food

Brayden is officially off the ketogenic diet.  He has been off for a couple of weeks.  We have seen a slight increase in seizures, a bit more frequent and a bit more dramatic...but not calling the neuro quite yet, giving him time to possibly adjust.

With the change in diet, comes changes for his GI system.  Brayden's GI system can be a bit temperamental.   We are working towards him becoming more regular, if you get my drift.  And we have had to give him some help with moving things along...sometimes it's not so pretty.  Oh, he can be so miserable if he is not regular and too many days pass.

The big goal for his food is not only to handle being off the ketogenic diet but to increase the rate of his food.  For over 3 years, Brayden's food runs at 42 ml/hr and that is slow.  His food is running constantly and we are still not getting all of his food in him in 24 hrs.  Between riding the bus, activities at school, moving him or anytime he needs to be unhooked from food, we are just not getting it done.  And every calorie counts. I am trying to increase it without causing an increase in vomiting (he is fed into his j-tube but it still can aggravate him enough it cause vomiting, even if he does not vomit the food).  I increased to 43 ml/hr a few weeks ago.  Last night I increased to 44 ml/hr.  My practical goal for his rate is 45 ml/hr...the pie-in-the-sky goal would be 50 ml/hr.  Any mom who handles those feeding pump rates knows just one number up or down can be a dramatic difference.

Yellow Puss is Never Good

Brayden's snow days were not as exciting as Carter and Luke's.

One morning while changing his diaper, I felt something wet and slimy...never a good feeling when changing a diaper.

A quick assessment and I realized it was not coming from his diaper at all.  His incision on his hip was oozing.   It was oozing yellow puss and irritated all over.  A little clean up and I could see a hole in the incision were the puss was coming out.  And it was really bothering him.

I called a friend, who in recent years became an expert on her daughter's many incisions and infections.  She talked me through what to do (Brayden and her daughter also share the same ortho dr).

Things were looking better.

The next morning, things looked worse.  So I called the doctor and we (we, as in, I had to take Carter and Luke with us because of canceled school, much to their chagrin) headed to the office.

The doctor got a culture, cleaned it out, put on a little silver nitrate and bandaged him up (with a prescription for antibiotics).   Oh the pain he was in when she digging into the incision to clean it up.  I know Brayden has an incredible pain tolerance so when he was hurting so much that it was a silent scream, I knew it was serious pain.  Thankfully he quickly settled and relaxed once we got in the car, with a huge sigh on relief to get out of that doctor's office.

It is starting to look better but will check in with the doctor later this week.

Seizure Dog?

Did our dog really miss her calling?  Was she really supposed to be trained as a seizure service dog, instead of a hunting dog (Jeremy does say she is a great retriever in the field)?

I have heard stories about those who have dogs that alert them to seizures but I have never actually seen it.

Until tonight...
Jeremy sitting on one couch.  Brayden in the big chair.  And I was on the other couch, working on the computer.  When the dog, started pestering me with nudging and whining (kind of doing her emergency potty dance).  I tried to ignore her.
I looked up and Brayden started going into a seizure.  I quickly jumped up to tend to him.  The dog circled around and got right next to Brayden, acting very anxious.
Brayden's seizure stopped and she plopped down on the ground to chew a bone.

Jeremy and I both were in amazement that the dog seem to be fully aware Brayden was going into a seizure (before we could see it), tried to let me know, showed concern and immediately settled down once Brayden was fine.

Shocked she did it.

We forgot to tell the dog

Brayden was at Jill's House for the weekend.

One has to worry when the house is a little too quiet (with three boys and a dog...too quiet is never quite good).  I did a quick little walk around to look for the dog and found her.

She was sitting outside Brayden's room.  Just sitting quietly in front of his doors.  She missed her regular morning check on him.

Then Brayden came home and she found her place.

Always right in my way, right next to Brayden.

One happy boy with a lot to say

It is always amazes me how my non-verbal boy can still say so much.

It is always amazes me how much my boy can understand what is going on around him.  Don't let those big eyes fool you, he totally knows what is happening.

Like Friday, we told him that we would be heading to Jill's House for the weekend but first he had to go to school.  And he "talked" about it all day.  It seemed like he needed to tell (or brag) to anyone that would listen; he was going to Jill's House.  His sweet little roars of excitement and expression.

Once again, he enjoyed his time at Jill's House.  Time with music, in the pool and seeing the therapy dog (who is becoming his regular buddy and how cute is this dog in the wagon?!).  There was time making crafts and hanging out.

Oh how much I love to go pick him up.  I miss him terribly and when they wheel him out, all I want to do is scoop him up and squeeze him (but I don't because he is not a fan of the squeezing...).  Carter and Luke there to greet him this time.

But what is quickly becoming my favorite part of Brayden's stay, is listening to him "talk" all about it.  He chattered all the way home and then hours after.  He had so much to say about his time.  Full conversation about it.  Each time he has come home from Jill's House he talks and talks.  And I can listen to him for hours!

 B Jills House from Carrie Jenkins on Vimeo.

Not for the Winter Olympics

Ice skating is not Brayden's calling, in any possible way.  He may like the music played during the performances but to tackle the ice on his own, or even with help, is not going to happen.

So what to do when the driveway looks like this...

Our ice storm did a number on our driveway, no matter what Jeremy or I did to try to melt it away.  It was inches thick with ice.

Brayden's bus comes to the end of our driveway but there was no way to get Brayden to the end of our driveway safely.  Can you picture a runaway wheelchair, hurling down the icy driveway?!...not pretty, not at all.

So an impromptu drive Brayden to school, which is not so impromptu since it is 20 minutes away.

However, Carter and Luke loved to slide all over the ice, too much fun for them!

Trapped

What a winter this has been.  Many, many snow and ice (more ice than snow) days where we have been trapped at home.  I am pretty sure the boys have been home more this winter than at school.

At first I like snow (or in this case, ice) days.  It makes the world stop.  All activities are canceled and we are not running around trying to get from place to place.  Many days we just sat in the family room, around the fire, playing games, reading books and watching a movie. 

But then the days after the snow days are spent making up for those days we were trapped at home.  Three of Brayden's appointments were changed in January because of the weather. The boys were swamped with work (especially Luke, the 3rd grader...had over 2 hours of homework, too many nights).  Brayden is way off his routine and going back to school or really just being out of the house can get to him.

This week just being in or out of the house is getting to me.  I have moments of feeling trapped.  Trapped in this hectic routine.  Trapped in the 30 miles radius of our house.  Trapped in the car, i.e. spending over 2 hours in the car for a 20 min doctor appointment.  And please tell me that other people's cars look like they live out of them, at any moment you could find traces of meals, homework, games, change of clothes (and we are still looking for that one shoe, some how some one's oldest child left the gym with only one shoe).  Trapped in the never ending medical needs of Brayden...confusion with insurance, medical equipment, his orders, his nutrition, PPL (no need to explain PPL, if you know what it is then you know what a pain it is), etc.  I have spent more time talking to complete strangers than I do to my friends.  I was on hold with the hospital for over an hour for the second time and I didn't dare hang up because I didn't want to get back in the queue again.  And oh my goodness, can I please expedite the pharmacy refill phone calls, for some reason this tedious task just annoys me and then I am at the pharmacy way too much...I frequent there more than any other place.

I like routine, in fact I enforce a routine in our house.  Order and routine is my happy place.  But I can get trapped in the routine.  Routine of every moment being about my children, their activities/schedules and their needs, it has been all consuming and I really don't see a practical way to cut back.  Lately the routine has felt overwhelming, like I am not doing enough as their mom, mostly because I feel spent and grouchy...we all know a grouchy mom does not make for a happy house.  But even the idea of breaking our routine or doing something feels like too much effort.

I need a vacation (preferably some place that does not have giant icicles hanging from the trees).  But then the idea of a vacation seems impossible.

I know these feeling will pass...in the meantime, praying for warmer weather.

Last step on the Keto Diet

Brayden is in his final week of the ketogenic diet.  The diet has been life changing for his seizure control.  The keto team has been our guide for almost four years (it would be 4 yrs in April since he started the diet), so over half his life.  I feel a little lost because they would take the lead in his medical care...most decisions would be made through the ketogenic team or having them at least consult.  We saw them so many times and many emails.  Brayden's health was closely monitored and watched...and now I am not sure who should do that.

Thankfully the wean off the ketogenic diet has been relatively smooth.  This last step down has been the only time we have seen an increase in seizures.  The increase in seizures have mostly been in the evening, close to the next medication time.  And we have only had to use a diastat once.

Last week was long after 3 appointments (and Jeremy was out of town for the 4th time in January) and the driving, lots of driving.  Brayden's GI doctor is helping us navigate the best nutrition route for Brayden.  Brayden GI system is not a big fan of change and his does not absorb things well...and through that continuous J-tube feed.  I would like to increase the rate on his feeding pump because he is hooked up all day and some days we have a hard time finishing his food...and in his little life every calorie counts.

We also saw Brayden's neurologist.  Brayden has been with her since he was just days old.  And frankly she was the one who had to break the hardest, worst news to us in those early days...so we know her well as she does us.  We discussed Brayden's seizure medications and adjustments off the keto diet.  Thankfully no major changes yet but we are armed and ready, if/when needed.

A lot seems to be hinging on Brayden's appointment in March with the Bone Health Clinic...hopefully his bone will start looking better than butter, much sooner than later.

Surgery on those legs

Time to work on those legs and with a side of Botox.

Brayden's right leg continues to be problematic...tight and making him uncomfortable.  Both legs scheduled for Botox and the right leg to have a hamstring release.  Brayden was all smiles in pre-op (apparently a little too comfortable in this oh so familiar place).

I thought the surgery was going to be quick, about 30 minutes but almost 2 hours went by before the nurse came to get me (waiting can do strange things to ones nerves).  Brayden usually has a hard time coming out from anesthesia, upset and a some seizures, so I expected him to not be pleased after this procedure...waking up with people still picking at him and the blood pressure cuff that ticks him off every time it starts squeezing.

As time went on I started to see that Brayden was not only mad he was in pain.  He has this cry that sounds like he is trapped and desperately screaming for help while trying to crawl out of his skin.  The PACU nurses tried to help with some meds but we realized he needed more.  But the surgeon went back into to surgery and could not be reached.  So they found the anesthesiologist who ordered some good stuff.  But I didn't want to be sent home on a Friday night without his pain under control and a long drive home in rush hour.  So the pediatrician's office was called and a wonderful nurse drove over a prescription to our pharmacy (heavy meds cannot be called in to a pharmacy).

Brayden had a rough night and following day at home.  The day after surgery was rough.  Lots of seizures and vomiting.  I think the vomiting was from the breathing tube aggravating his throat.  Finally after some more pain meds and a diastat (emergency seizure med) he found some rest.

After the weekend, we went back to the ortho surgeon to unwrap everything and check the incisions.  Oh he was not happy with that appointment.

The biggest fan of snow days

Are these two.

Hours of relaxing by the fire, family around and nothing to do. Their favorite thing.

Well, we did watch some movies and make snow ice cream (and Brayden was a little tortured with time in his leg braces and activity chair).  Brayden was not a fan of the touching the actual snow but totally fine with a taste of the snow ice cream.

And now school has been canceled for the rest of the week...we are going to get more creative about things to do around the house...

School time, that leg and back

I love seeing Brayden at school.  School pushes him in ways I would never be able to do at home.  At home, I like to keep him happy, comfortable and snuggle him every opportunity I can (I have a hard time keeping me hands off of him when he sleeps, he is so cute and precious).

At school he is a big boy and at home he is my baby boy.

Since we have had on going problems with his right leg, we have been trying to find the best ways to help him at home and school.  As well as his hips and try to position him without putting pressure on his back.

Brayden has a PT at school so we met to go over way to best help Brayden.

And getting him in the stander which can help his bone strength. 

A camping we will go...

Well, that is what we call Jill's House for Brayden...his camp because it is his little retreat and his version of camp like his brothers' overnight camp in the summer.  And really our best way to explain Jill's House to other people.  A place filled with fun activities, lots of kids, music, crafts, swimming, etc.

I loaded up Brayden on Friday night for his 3rd weekend.  Like last time, I got Brayden ready for bed since the nurses were busy checking in all of the kids and Brayden's bedtime routine is time consuming.  And I don't mind doing it because I get to see Brayden settle in at Jill's House and see how he reacts to being back.

Pulling up to Jill's House and getting Brayden out of the car is interesting to watch.  He gets a very disgruntled face as if he was thinking "What am I doing out, I don't do nights?!" or "I am not liking this".  Then wheeling him in to Jill's House, he starts taking it all in.  His grouchy old man face relaxes and his eyes get bigger...he knows where he is and he likes it.  Then he looks very content and even blessing us with a few grins and happy noises.

We met a couple of new nurses (new to Brayden), they were very detailed about Brayden's care and medical needs, which I very much appreciate.  I finished his nighttime meds and they wheeled him off for his stay.

How was Brayden's stay?!

Another successful weekend.

He even had some time with the therapy dog that visits Jill's House.  Upon pick up they gave us a picture of Brayden with the sweet dog.

Each time they wheel him out for pick up, he looks so much older, mature and bigger.  This pick up time, I had a few helpers (Carter, Luke and a friend). 

These weekends have proved to be such a treat for him (while we were at basketball games and wrestling matches for the boys).  And he "talks" about his stay all the way home...he really has a lot of say about all of his fun.

A little help goes a long way

Do you have trouble finding a sitter for your kids?  Yes (like most parents)?  Now imagine trying to find help for Brayden.

We have had nursing hours for Brayden for a few years now.  We have a nurse for 40 hours a week.  Brayden qualifies for more but it is hard to find a nurse for those off hours (evenings and weekends).  Brayden's current nurse has been flexible and trying to shift her hours to help when we needed the most help.

Jeremy is traveling so much these days.  In the month of January, he is gone more days than he is home.  The business has had amazing growth but that means Jeremy is on the road to those offices.  I am running Carter and Luke (with Brayden tagging along, much to his dismay) to their many activities.  Those late night basketball and wrestling practices do not go over well with Brayden.  Especially since he has been at school all day and is going the next day as well.

There has been some meltdowns during those evening practices (and I have been on the verge with Brayden), sometimes bad enough that I had pulled the boys from their practice early because Brayden couldn't take it anymore...he couldn't take the noise, being tired, too much stimulation for that time of day when all he wants is be in his bed...and I couldn't listen to any more of the random, well meaning, strangers coming up to him (getting too close) saying "Oh, somebody upset and tired!" or "Someone wants to go to bed!" and others that have no problem touching him, which he is not a fan of strangers touching him, but really who is?!

After one too many rough nights, we found some extra help.  Brayden now has an attendant.  The attendant can help with Brayden but not any of his medical stuff, so we adjust so that the nurse or I can do that stuff.  We have the attendant for a couple of evenings during the week as well as Saturday.  And the bonus of having this attendant...she is from Brayden's school.  She knows Brayden; knows his fakes cries, his little quirks and preferences.  She was an assistant in his class last year and the previous year.  She also has worked with other families as an attendant.

We are two weeks in and we are already seeing the benefits.  Brayden is not stressed.  Mommy is not nearly as stressed.  Carter and Luke are not stressed to hear Brayden screaming during their practices/games, worrying that mom would pull them early just to get Brayden home.  Jeremy is not stressed listening to me rant and vent about how I stressed I was getting Brayden in and out of practices, then trying to keep him comfortable and content till we can get him home.

Brayden is home, on those busy nights, resting peacefully is his bed (or having a little dance party).  And his first Saturday at home in a long time (rather than at his brothers' game), he was happy and had fun.  So much fun that he was deep asleep after the attendant left.

Having fun and relaxing can be exhausting.


*Clarification due to a comment.  First off, how nice to have someone be so judging, especially when they do not know, nor do they understand.  We do have a nurse, she can work 40 hours but she really works 30-35 hrs recently and the vast majority of her time is spent with Brayden AT school.  So we have her about 4 days a weeks and they are not full days.  Brayden does go to school M-F and I would like to say that he goes every day...but he does not for a variety of reasons.  The new attendant is here so Brayden can stay home and sleep on the weeknights (only 2 nights).  A lot of the boys practices start around 7:00 p.m. and Brayden's bedtime is 7:00.  And the attendant is with him so far 1 Saturday, and will do more Saturdays, so that we can go to Carter and Luke's games.  I have missed ALOT of games because Brayden does not handle the crowd noises, ref whistles, buzzers, etc.  Brayden and I have stayed home and missed many events because it was best for Brayden to stay home.  Now having an attendant, I have the option of actually going and Brayden can stay home, which is best for him.
Just because we have a nurse or attendant with us does not mean that I am not with him.  Trust me, I am with him.  And with him for a lot of quality time.  More time than I even have with Carter and Luke because of their school time and sports.
Please don't judge, you have no idea.  I love all of my boys dearly and part of being a parent is finding the balance.  I would love to have Brayden with me at every moment (and I have pushed him to far, too many times when trying to include him in everything) but sometimes it is best for him to be at home, with some help.

A Medical Update and More

Brayden has started his wean off the ketogenic diet.  His is in the 2nd step down of 8 steps.  He should be off the ketogenic diet in February.  A couple of Brayden's seizure medications have been increased (his Phenobarb and Lamictal; he is also on Keppra) to hopefully curb the effects of coming of the diet.  His neurologist also gave us a list of what to do/med to introduce if we started to see more problems with seizures.

He does have seizures daily, so we are monitoring and so far we have not seen any significant problems.  Amen...cause I hate seizures, I hate what they do to him.

The ketogenic diet has been our guiding path for Brayden's medical care since he started 3 1/2 years ago.  Every few months we check in with the neurologist and nutritionist (his pediatrician and GI doctor have been involved with them as well).  His labs were checked all of the time, so we knew what was happening with his body.  Before the diet, NOTHING was pro-active, it seemed like we were always waiting to put out another fire.  In a way, the ketogenic diet provided comfort, not just for seizure control, but with his health because he has been so closely monitored.  Coming off the diet, I am trying to adjust Brayden's care and get back into a regular routine with Brayden's other doctors.

For his bone health: He is coming off the ketogenic diet to help, as well as a super duper Vitamin increase.  He will go back to the Children's bone health clinic in March.  We are still having problems with his right leg being extremely tight and uncomfortable...it could be his femur still not healing or just his muscles being too tight yet again and time for Botox so I hope to see his othro dr soon (his regular ortho dr not directly part of the bone health clinic).

Then his GI and pancreas troubles, it will be interesting is see how his body will adjust to not being a such a high fat diet.  His pancreas and GI system was not a huge fan of food to start, then the ketogenic diet needed more adjustment for him to absorb and digest.  For what we have seen so far...well, some interesting diapers.  Brayden will be seeing his GI doctor this week.

We also check in with his nephrologist.

We will be making the rounds.

His Christmas break

Brayden is a huge fan of Christmas break...for the most part.
Christmas Eve at Grandma Ellie and Papa Warren's house.  Brayden is parked by the roaring fire and lights, good for the rest of the night.  He even endures the singing, explosion of the gift exchange and cousins all around (a quiet Christmas Even does not happen but it is so cozy).

Carter took on the responsibility of helping Brayden open his presents, trying to get Brayden participating.

Then Christmas morning.  Carter and Luke were up early (we started hearing the giggles at 5:45 a.m.).  That was not when Brayden was going to get up, nor do we want him up that early...it would not end well.

And the boys went off to get my surprise gifts.  A couple of necklaces...with turtles (Brayden's mascot).  Jeremy, Carter and Luke designed a necklace for me...diamonds and a turtle.  It was so precious to see how excited they were to have these surprise gifts.

Then to Maryland with MeMe and Papa Johnson.  More chaos and noise.  Brayden handled it for a awhile, then needed a break (a little rest in the bedroom).

A busy Christmas break, with brother sports, practices, family time...even Johnson professional family photo when we, for the first time, left Brayden in his wheelchair instead of holding him (will share those when we get them).
All Brayden wanted was to be home with his brothers, sitting by the fire...it could not be any better.

And Brayden spent his New Years in bed and asleep by 7:00 p.m.