It has been one of the most trying weeks since the NICU stay....not in terms of his health, but in terms of OMG...what are we going to do? There are 6 other kids at home, Tony has to work...and no one to help. THAT is what we had to deal with...on top of the house just falling apart...homework had to get done, laundry, dishes, dinners, baths, meetings...oh it just never ended! The stress that we are facing in this house is more than what I'd wish on anyone. Sometimes I just feel that He got it all wrong (i know I'm not supposed to say that...but this is how I am feeling), I am not the strong person that He thinks I am. I really am not. There is a lot of sadness, guilt, anxiety, and frustration that is inside of me.
I was giving Kenny and Gina baths yesterday evening...It was just a mommy moment. I was looking at Gina...looking at Kenny and just started to cry. My perfect son...the one I prayed and prayed that him and his twin would be born healthy and on time is not perfect...ok...I know what you are going to say...YES he is perfect...I love him with all my heart and soul, but it just hit me like a ton of bricks...he is a special needs child. There is something wrong with him...physically and mentally. He is beautiful...but he is...slow. His head is small, eyes crossed, tongue sticks out, he looks tired but his smile lights up the room. I love my kids with everything in me. They are what makes me...My only wish and dream was to have healthy and happy children...and this is fading. Because of Kenny being so sick all the time...taking up most of Tony's and my time...the other kids are paying for it. I am so sad about this. I keep asking God, why me...why did I have so many kids, so much heartache, so much struggle in this life? I have never done anything wrong...honestly...not 1 thing wrong...followed life's rules to the "T"! The stress is overpowering. So much that I had to wear a stupid heart monitor a few days ago because of chest pains. It's one thing after another...the trials and tribulations never end...ever.
I know I am not supposed to question God and his plans...I know that. I also know that there is a reason for everything...a reason why people come and go out of your life, a reason why good and bad things happen...but loss...loss of any kind...over and over again...brings me to my knees. From the time that my brother died...everything in between...up until today...and probably tomorrow, I am on my knees asking why, what if, and is there something more that I should have done or should be doing.
I have given up my personal plans of working, owning a headpiece boutique, drawing, painting, making jewelry...given all that up to raise my children. I don't mind it at all. I chose to do this, but I also gave up part of me...then when Nick died...I lost more of me...then as Kenny is having more and more health issues, even more of me is gone. I don't think I have anymore of ME left. I am happy...I truly am. I have a great husband, family, and friends. I also feel very blessed and honored that God thinks I can handle all this, but I just want a normal life for myself, my husband and my kids. The kind of life that we don't all have to be stressed out ALL THE TIME. The hospital stays, the trying to find someone to help out while Tony has to work and I have to watch the other kids when Kenny is in the hospital or has Dr. appointments. The list of medications that have to be given at specific times, the worrying what will happen next to Kenny, if he'll eat or not, if he'll have another seizure, if the next cold lands him in the hospital with lung issues, will he ever be "right"? Will the other kids resent their childhood being cheated from of all of this? It's so much!
So Kenny is on 3 new meds, and has a new diagnosis, Gastroparesis (slow emptying stomach) and GERD. These are on top of...Failure to thrive, Epilepsy, moderate to severe hearing loss, chronic lung disease, developmental delays, Strabismus, muscle issues, feeding issues and barely any speech. There is still the Autism and chromosome abnormality diagnosis that we are going to be looking into as well. He is still not eating solids but that is going to take time...a long time. He is eating 2 1/2 jars of stage 3 baby foods a day...wont eat any more than that...and is drinking his bottles like a champ. And with everything he eats and drinks, Duocal! They have him on Reglan, Prevacid and Periactin on top of Trileptal, Albuterol, Pulmicort, Singular, Duocal, and if needed...Diastat.
With all this on the table....I am very grateful to MetroHealth for taking great care of my son. The nurses were amazing! They understood that we couldn't be there all the time with Kenny, so they took him in under their wings.
Happy Good Friday everyone. May this Easter be full of blessing and renewed faith!
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1 comment:
Michele,
I'm so sorry that the past week or so has been so awful. Here's my thoughts on things, for what they are worth, as someone who has BTDT. Remember that Hallie was a CHRONIC vomiter for the first almost two years of her life and also had a diagnosis of delayed gastric emptying and uncontrollable GERD. She was on reglan, prilosec, zantac and later axid, and we had to give her something to help her poop (for her, prunes worked far better than miralax). She had constant congestion, stridor, and was on puffers of albuterol and flovent for all of that. She still vomited each and every day, and usually a lot more than once a day (often more than once a meal, really. I think our record was 10 times a day, but it was chronic). We were tearing out our collective hairs and going nuts over this but, because her weight was always okay, we were the ones who were accused of making this up. Arg.
Anyway, has anyone ever suggested trying Kenny on something other than pediasure? That stuff made Hallie MUCH worse. Getting her off of cow's milk for a while, and a whole bunch of other stuff, REALLY helped. I don't know if goat milk would work for you, but it might be worth a try (and is comparatively a heck of a lot cheaper than neocate or elecare). But those might work, too. The calorie load that he's taking in might be making things worse, too. But if he does have food allergies, chances are that he can't absorb stuff and that's part of why he's not growing. I don't know how close you all are to Cincinnati, but that's the place to go for a lot of this stuff. Still, even a trial at home (and watch out for trace amounts of cow's milk in stuff---it's kind of everywhere) might not be a bad idea.
The good news: two years out Hallie can tolerate cow cheese and processed foods, but not milk itself. Who knows why. She still drinks goat milk, but the vomiting has pretty much gone away. I have lost count but she hasn't vomited more than 10 times in 2010 and most of those were related to pneumonia. So there is hope.
Sorry to take up so much space!
Happy Easter to all of you!
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