Saturday, February 16, 2013

6 weeks

Wes turns 6 weeks tomorrow!  You'd probably expect me to say it flew right by, but it did not.  It's been a ride, and we are still on that ride, but with a lot less tears these days. 

  I changed Wesley's doctor to a doctor that would actually listen to me and treat my child.  I've never had to push for medicine for my baby before, but when your baby is in pain, you do what you have to do to help him.  The zantac was just not strong enough.  I changed my diet... I'm now dairy, caffeine and chocolate free.  In addition to wheat and sugar free.  Basically any food that might bring you pleasure, I cannot have. It's temporary.  He won't have reflux forever.  He won't be nursing forever.  But for the right now, he is. It's the best thing for him (and me!) and as a mother, we do what's best for our kids, in spite of ourselves.

  So he was changed from zantac to Prevacid.  He has been on it for three days now and we can already tell a difference.  He smiled at me yesterday!  And you can hold Wes now and he wont cry!  In fact, most of the tears are reserved for diaper changes and intense hunger.

  The past 6 weeks have been hell, but I'm looking forward to the next 6 weeks and beyond being much easier. 

  The older wildboys are doing fine... God bless them, they never asked why Wes cried so much.  Never complained.  Just kept kissing him and loving him.  I wish I could find my inner wildboy.  So much unconditional love.. that's kids for ya.  I wish I could say I had been as graceful about Wes' tears, but they brought me down with him.  As good as I am at falling down, I can get right back up.  We are learning this life together.

  Dylan had an appt with his Neuro on the 8th and I never updated anyone on how he's doing.  Dylan's MRI results were fantastic.  His old scars are healing and his brain looks much better.  We are awaiting the results of his PDH enzyme lab work, and when they come in we will reevaluate the need for steroids.  If he is PDH deficient, he will stop steroids and start a low sugar low carb diet.  If he is not deficient, continue steroids at Doc Veda's word.  I got a phone call the other day telling me that Veda has changed him from once weekly steroids to biweekly steroids, so he won't get them as often now.  So we are getting further away from them, slowly but surely. 

  Don't ask me how homeschool is going. 


Saturday, February 2, 2013

Reflux sucks: a 4 week journey

  In all my childbearin' years (which come to an end as of February 21st because I am SOOOO getting my tubes tied) I was so happy I had relatively easy babies.  I would hear horror stories of parents with their colicky babies, rocking them and walking them all hours of the night in a sleepy stupor, and be so thankful that wasn't me.  3 times I had babies and not a drop of colic.

  Then came Wesley.

 If you have ever seen the movie Multiplicity with Michael Keaton, there's a line in that movie that goes something like.. when you keep making copies of something... they start to not come out so sharp... now I know that doesn't apply to my children.  They aren't copies of me or my husband and I am not implying that they keep coming out less intelligent, but they are sort of replications.  A roll of the dice, a chocolate in one of those assorted boxes.  You really never know what you are going to get.  This time we rolled the dice and got a reflux baby.  He's lucky he's so adorable.

*** I had to stop typing because there was a shriek from the bathroom.  Somebody left a surprise in the bathtub.  Wildboy style. ***

  Since the very day he was born, Wes has had reflux.  His reflux is not the kind that Dylan had.  Dylan was dubbed a "happy spitter".  Dylan puked all day every day until he was 9 or 10 months old.  He wasn't made uncomfortable about it and he gained weight and was thriving.  The difference in Dylan's reflux and Wesley's reflux is that Wesley's is silent reflux.  He rarely spits up, but he is in agonizing pain from it.  He is constantly arching his back and in general discomfort.  It's been very difficult these past four weeks trying to figure out exactly what was going on with him.  I cut dairy out of my diet, as well as chocolate and coffee.  Eating is not something I enjoy anymore, it's merely something I do to stay alive.  I'm currently eliminating one thing at a time to see if I can pinpoint something that is bothering my baby.  I might just be grasping at straws, but I won't stop until I figure this out.  If it's just reflux, it's just reflux.  But if there's any chance it's a food allergy I will find out.

  We ended up taking Wes to the doctor about it Tuesday.  I hate taking my kids to the doctor, so it's obviously something that has been consuming our lives. He started Wesley on Zantac.  I have done my research and I am a little apprehensive about it.  Zantac doesn't have a great reputation of being an effective medicine for reflux babies.  Most end up on Prevacid. 

  Today is Wes' fourth day on Zantac and it was not until yesterday that we saw real improvement. Yesterday was the first day in a string of several days that I did not cry even once.  When my baby is in pain and crying and I can't help him, it makes me cry.  Add that on top of my other 3 wildboys that I'm spending less time with and the house I can't keep up with and the meals I want to cook but can't and wouldn't know what to cook because I can't eat anything.... I'm drowning most days.  This too shall pass.  It will get better.  I will figure this out.  Wes will grow out of reflux.  But the right now is hard.  Wes sleeps great, he takes long naps in the day.  But when your baby has been screaming and then finally falls asleep, the last thing you want to do is wash dishes or cook.  I end up pacing the house thinking he might wake up any minute.  Then I go play with my kids because hell, I miss them.

  Things are looking up though.  He is starting to coo which is fun.  He's obviously trying to tell me that he loves me and thanks for the boobies.  I just know that's what he means anyways.