Monday, November 25, 2013

Memory Monday (Spontaneously opened up) 1/24/11 - 34


Monday, January 24, 2011


That's what happened to Jack's cyst today.  His nurse was putting coconut oil on it because the skin was really dry and it opened up.  She said that some green guke came out and then blood.  It then turned more purple and looked really bad.

When we got to Dr. Easter's office he was concerned about it.  He had another doc in his office look at it.  He made the decision to start antibiotics and do warm compresses.  He also sent us to dermatology so they could take a look at it.  They opened it up again since it had closed from this morning.  They got a little puss to culture.  A lot of blood and a very unhappy baby.  But he wasn't unhappy because they were messing with him it was just his time to throw a fit.  Other than that he did really well for them.  He is definitely a trooper.

Our day doesn't end here.  The dermaologist wanted us to see opthamology because it was so close to his eye.  They again looked and poked at him.  More blood and a squirmy baby.  They checked the white part of his eye and everything looked good.   After seven doctors and a lot of debating on what to do here is the conclusion.

We will start the antibiotic and go back tomorrow and they will open it up to drain it.  Since he cannot stay still he will be put under.  Unless, by some chance the meds kick in and it starts to clear up.  So we leave and John goes to pick up the med at BAMC.  When he is leaving he calls me to let me know that they do not have the tablets but gave him a suspension instead.  He told them that he was on the keto diet but they did NOT understand.  They told him to give him more water so it would dilute the sugar.  NOT how the diet works. 

I went into a panic.  I emailed my yahoo groups for their opinion and start looking up the amount of carbs on the internet.  3 grams of sucrose per 5 ml.  He would 5 ml 3 times a day.  His meds are supposed to stay under 500 mg of carbs a day.  9 grams would put him WAY over.  To make a long story short.  We are not giving it to him.  We made the decision to go ahead and have it drained and we will get the tablets tomorrow. 

Jack was having a tough time this evening.  He was having a lot of seizures and crying so I gave him some Tylenol and now he is resting comfortably.  I think his eyebrow may have been sore.  This is what it looks like after all the prodding today.


 
 

Posted by Tracy at 8:29 PM 3 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif


Labels: Ketogenic

Monday, November 18, 2013

Memory Monday (60-79-63-44-22) 1/23/11 - 33


Sunday, January 23, 2011


Those are how many seizures Jack has had the past 5 days.  79!!!!  I couldn't believe that one!  This has been the first time in a few months that I have been counting.  I guess they really crept back up on me.  I hate that he has been suffering and I didn't even know they were seizures.  We decreased keto diet ratio on the day that he had 79 seizures.  Then they have been dropping since then.  What does that tell me?  I have no clue.  Is the diet not really working?  Did he need to be on a lower ratio for better control?  Has he been having this many all along?  Too many questions!!  Will he ever get seizure control?  I hope the answers will come in time.  Until then, I have to watch him suffer and not develop.   

Other than the seizures he is doing pretty good.  The last two nights he slept until 6:30.  Once I started feeding him he fell back asleep.  During the day he's been alert and watching his lights and football. 

He has done really well with the amount increase of mouth feedings.  He can finish them in about 10 minutes.  He seems to do better when Daddy feeds him. Speaking of John feeding him, he's doing it right now.  Jack is cooing and John is whispering to him. So sweet!!  I guess he just loves spending time with Daddy.

We go to HIS pediatrician tomorrow.  If you read the recent post about the other doctor that we saw you know I wasn't happy.  I'm actually looking forward to tomorrow and getting some answers.  If he can't do anything about his eye then he will send him somewhere that can.  He's had the cyst for over a month and it is now getting bigger.  He will also get his immunizations.  Not looking forward to that but I know he needs them.  So until then...

Posted by Tracy at 6:29 PM 0 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif


Monday, November 11, 2013

Memory Monday (15 weeks) 1/23/11 - 32



I am 15 weeks and 2 days.  John says that I finally look pregnant.  I started really showing about a week ago.  I am feeling much better these days.  I couldn't wait to get out of the first trimester.  Since I have my appetite back I expect to gain back the 12 pounds that I lost. 

I think I felt the baby move this week.  I felt Jack move at 18 weeks.  With this being my second and I know what those little squirmy movements feel like, I can tell earlier. 

 
 
I go to the doctor this Wednesday.  Since they said that I would have a growth scan (ultrasound measuring baby) each month I hope to have some new pictures of the little one. 

Recently, I have been cleaning and taking care of the house.  Since I wasn't able to for the past 10 weeks it feels good to have my house back to normal.  Grandma (my mom) is coming down this weekend to visit and look for apartments.  For those who don't know yet, she is moving down here in April.  She's really excited and can't wait to help with Jack and the new baby. 

Posted by Tracy at 5:10 PM 6 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif


Labels: Baby, Pregnancy

Tuesday, November 5, 2013

Jack's Poem

Tracy Collier Durrum wrote this poem for me a day after Jack passed (7/2/12).  She told me that it just came to her and she had to write it out as soon as she could.  She posted it on my Facebook wall and then later read it at Jack's funeral.  It now hangs in the hallway of my house on blue cloud paper.  Thank you Trace for writing this.
 
 
BEAUTIFUL BOY FULL OF HEART
FROM THIS WORLD YOU HAD TO PART
WE MAY NOT KNOW WHAT'S IN STORE
BUT I BELIEVE IT'S SO MUCH MORE
WHEN YOU WERE HERE YOU WERE BOUND
BY THE PHYSICAL THINGS THAT HELD YOU DOWN
NOW YOU'RE FREE AND IN HIS CARE
IN A PLACE VOID OF FEAR
YOU WILL SURELY NOT BE FORGOTTEN
AND DEFINITELY MISSED
BUT TO WANT YOU HERE INSTEAD OF WHERE
YOU ARE NOW, IS FROM SELFISHNESS
THE NEED OF SEEING YOUR CONTAGIOUS SMILE
YOUR HEART AND WARMTH MADE IT ALL WORTH WHILE
SO AS WE LOOK FORWARD TO WHAT WILL BE
WE KNOW AT LEAST YOU HAVE EVERYTHING YOU NEED
KEEP SMILING FROM HEAVEN TO REMIND US ALL
OF THE BLESSING YOU WERE BEFORE YOU WERE CALLED...
HOME TO BE WITH GOD!!
 

Tracy and Jack Summer 2010
Thanks for helping me give him a bath that day!
 

Monday, November 4, 2013

Memory Monday (What now?) 1/18/11 - 31


Tuesday, January 18, 2011


I spoke with the nurse practitioner from the keto team today.  She wanted to know how the Keppra wean was going and I wanted to know about his lab results.  I told her that I didn't think that he was having any more seizures since going down on Keppra but I haven't been counting each spasm.  We were hoping that with the decrease of carbs he would have fewer seizures.  She wants us to stop the wean and stay on the dose we are on.  His blood ketones were actually 5.85 so we cannot increase his ratio.  That is well within the normal range for blood ketones.   

So now what?  Well, it's not what I thought they would suggest.  The neurologist wants us to down on the ratio to 4:1.  This is to see if the diet is working.  He thought that maybe he could be having 2 or 3 times the amount of seizures if he wasn't on the diet. 

I feel like I am at a loss right now.  I just want his seizures to decrease and him not struggle.  It's horrible to watch my baby have a spasm and then poke his little lip out and he starts to whimper.  IT'S HORRIBLE!  I hoped and prayed that the keto diet would be his wonder "drug".  I guess that's not the case. 

 

Posted by Tracy at 4:05 PM 0 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif


Labels: Ketogenic, Seizures

Friday, November 1, 2013

Deborah

Most have already seen my post of Deborah's pictures.  If you would like to look at it again click HERE.  It really is worth your while, she takes beautiful pictures.  I after I posted that blog, I looked at Deborah's Blog and realized that she wrote about us.  About Jack pictures. 
 
Recently, while I was cleaning up the blog a little, I came across my post "Capturing the Moment".  Just to look at those pictures makes my heart hurt.  I then went to her blog again and knew that I must share it on here.  If you would like to see what Deborah wrote about us, click HERE. 
I will leave you with one more photo that she took.  She does such wonderful work.  Thank you so much Deborah!!