Where have we been?

On vacation.  We actually got out of town, just the five of us, to Hilton Head.

I will be back with details and pictures.

New to the Office - paperwork

Brayden has been seeing most of his doctors for quite some time.  If we do see new doctor, it is usually in the Children's system and we do not have much paperwork/intake to do for Brayden.

I loathe new patient intake and paperwork.  I do not want to regurgitate all of the information, then if they ask for past surgeries and procedures...do they really want to know all of them?

Later this week we will be taking Brayden to a new dentist.  Our family dentist has been helpful at trying little things here and there (not even counting most as a visit but checking Brayden when his brothers have an appointment).  We needed a pediatric dentist, who handles special needs children and does sedation.

I called this week for the intake phone call.  I answered typical questions about contact info, insurance, etc.  Then came the medical history, thankfully not over the phone.  I downloaded the form.  Thankful that I could sit and home and fill it out, rather than in the office (since it takes to long).  So many questions to answer; deciding what info to give and what leave out, after all this is for the dentist.  I finally stopped trying to fill in the questionnaire since I was running out of room and attached our sheet on Brayden's medical history.

There was no way his medication list would even fit on their questionnaire.

I hope this dentist works out...the wait list for Children's dentist is too long.

Get her with a kick

Our black lab does not pay much attention to Brayden.  If we prompt her, she will certainly come lay her head on him or nudge him with her nose.  On this day, the boys and I were in the study working on homework.  We came around the corner to find the dog laying right next to Brayden.

Not only is she laying up next to Brayden's chair, Brayden is tapping/kicking her over and over again.  She continued to lay next to him while he had fun kicking her again and again.

Miles

Our car had a big moment recently.

I cannot believe the mile that we put on this car (especially since it is NOT used for commuting to work).  But many miles back and forth to doctors, hospitals, tests, etc. 

I have been in the habit of driving around so much that our car feels like a mobile home.  Jumping in for a doctor's appointment (or whatever else) we have:  Diapers, wipes, change of clothes, medications, Brayden's food, medical papers/records, extra mic-key button, movie, music, snacks for me, money for parking and tolls, blankets, water, etc.  And this is just when I have Brayden...if I have the other two boys too, the list grows but at least they are old enough now to gather their things.

I think about all the miles we have traveled the years that we have had this car...I cannot believe the roads we have taken (figuratively).  At lots less fun road trips than I would like and a lot more doctors than I would like.

Still, these are the miles that we have traveled.

Legs and Tummy

Brayden had a check-up with his orthopedic surgeon.  Legs/hips are looking good.  His hips are rolling out, which is a good thing since his legs were getting stuck turned in.  The incisions are healing nicely.  He will have another round of botox in his legs, probably in a couple of months.

Then later in the week, Brayden's feeding was accidentally put into his stomach, g-tube (he only gets things by j-tube, intestine).  Last time this happened it was a trip to the hospital.  This time, Brayden vomited the little bit of food that went into his stomach, it seemed he got it all out quickly.  We had to stop his feeding into his j-tube. As the afternoon went on he vomited a few more times but nothing to bad.  About dinner time, I picked him up to sit in my lap.  I wanted to him sit with us during dinner.  As I picked him up, a gushing noise was coming from his drain bag.  We attach a drain/vent to his g-tube most days around the clock, it helps relieve his stomach.  Well, this night his bag was filled with blood. 

A short time of getting food into his stomach and he really cannot handle it.  A tiny bit of food caused this.  And it seems to shut down his GI system.  We knew to put him on gut rest.  But the blood concerned me so I put a call into the GI doctor.  We discussed the options (I said no to some of them) and decided on giving him Pedialyte via j-tube at a very slow rate and then introduce his food over the next couple of days.  Brayden handled it all just fine.

Never a dull moment.

Two year Keto

We are approaching the two year mark of Brayden being on the ketogenic diet.

Within the first few months we quickly saw a significant decrease in his seizures.
Before the diet 10-12 seizures a day and every 6-8 wks in the ER
On the diet 1-2 seizures a day and made it 5 months with a trip to the ER

We did struggle a lot with the right formula mixture with the ketogenic diet, discovered problems with his pancreas...which turned into losing too much weight and compromising his health (doctors were starting to bring up moving him to TPN).

We barely had to get hair cuts (a lot was falling out and became much lighter in color) or trim his nails or even buy new clothes.  

His bones were protruding too much, pressure spots, etc.  He just felt weak and frail.  The dark circles under his eyes were ready for some heavy concealer.  He was also miserable, constantly miserable.
















We collected urine samples, lots of poop collection (do not ever want to repeat those) and lots of blood work.  We tried tweaking the food this way, that way and the same with the pancreatic enzymes.  They even tried to wean him off the ketogenic diet.

Once we found the right formula and added right amount medication for his pancreas, he began to thrive.  His chubbiness is to the max.  He is much healthier, absorbing nutrients and seizures are controlled.

Upon introduction to the ketogenic diet, we were told that most children are on the ketogenic diet for two years and can be weaned off (kind of like being on a heavy medication for too long).  We drove to Children's in DC last week to meet with the ketogenic team.  Brayden has been handling the diet pretty well, there is not a big reason for him come off the diet.  Brayden is already monitored by many doctors so any problems would be addressed.  Brayden also has a lot of blood work done (that is horrible, he is a terrible stick).  He is closely watched on many fronts.  The conclusion is Brayden will continue on the ketogenic diet indefinitely...as long as it works for him.

Did I say that he stayed out of the ER for over 5 months?  That is a record for him (starting from the moment he was born).

We did boost the calories in his diet to make up for the lost weight.  Now he is gaining weight a little too fast...tipping the scales at 36 lbs (when about a year ago, he was around 26 lbs).  He blood sugar has been a bit high - possible sign of too much food and his urine a bit low - adding more water now and taking away some calories.

Now he is one yummy, healthy boy (well healthy for being Brayden).

Dr. Seuss for the day

We spent Dr. Seuss's birthday at the nephrologist (and I had to dress Brayden appropriately).  A check-in since Brayden has been on certain medications (that could have adverse effects on the kidneys) for a long period of time and he has been on the ketogenic diet for all most two years...plus Brayden had a kidney stone a while ago.  Everything looks fine with his kidneys but we will take him for a scan to just to check.

After the nephrologist, we headed to the pharmacy.  Brayden fell asleep during the wait; my sweet snuggle bug.

Today you are you! That is truer than true! There is no one alive who is you-er than you!
-Dr. Seuss

Hair Cut

Getting Brayden's hair cut is not an enjoyable task (our friend of Micki's Barber Shop does a great job).  Although he is handling it better as he gets older...but do not try to hold his face.

Perhaps there was too much time between haircuts...