Reflecting on the last year is easy and hard at the same time. I know I spent the first three months in a twosome, but its really difficult to remember a life without my bubbie. He is, NO DOUBT, the best part about 2016. I unfortunately spent (and undoubtedly will continue to spend) an inordinate amount of my time worrying about Carter and his/our future, as we search for a diagnosis and continue to “treat” his symptoms.
My New Year’s resolution is to focus a little more on having fun with him. I know that worry will always be there, but I am ready to be Mom. Not therapist, not doctor. Just good ole’ mama.
This means in no way that I will be lenient on the therapy he is receiving at home or quality of his care. This just means, if I want to take him to the mall to ride on the carousel for a few hours instead of staying at home to “work”, that’s what we are going to do. Life has been difficult, to say the least, and I need to be a little bit more optimistic. No matter what the problems are, he is still my bubbie and I love him with every part of my soul. He is the biggest and best part of me.
Here is to 2017! It WILL be Bubbie’s year.
After a slew of appointments for the last 8 months, I have finally been referred to our first specialist, a pediatric neuro-ophthalmologist. There are apparently ZERO in the good ole’ state of Louisiana. I shouldn’t be surprised as we don’t offer much in the areas of progress here.
Our current ophthalmologist indicated that she was positive something would show on his MRI and since it came back clear, she is baffled. I have now had to send her videos of the weird things Carter’s eyes do, and how he picks and chooses what he wants to “see”. I am anxious for the day he can speak so I will know exactly how his eyes work.
And I am stuck in this awful Catch 22. I am unbearably happy with positive outcomes, but unbearably tired of no answers.
So now we wait, again. She will be getting in touch with our pediatrician to discuss more crap on top of all of this. Crap I don’t even feel like talking about right now.
I will say my usual prayer tonight that a miracle will happen and he will outgrow it all. Say one with me…
Keep baffling them, bubbie.
What a great Christmas for my little dude! He was so terribly good for being away from the house all day.
I had my first taste of judgement and/or pity directed at what we are going through, but I held my head high and marched on.
<start rant> I never want anyone in the world to pity us. My son is not less than. He is amazing and beautiful and sweet and different. No need to point out that his eyes cross, I realize that. Just love him for him. That’s all he needs. He might not be able to sit yet, or hold his head up that great, or focus real well, or speak another language. Does that matter? No. He’s fucking awesome. <rant over>
Other than that, bear got some sweet gifts from Santa, who may have gone overboard. But it was worth it. Today he also really played and interacted for the first time. It was GLORIOUS!
Tonight, we rest. Tomorrow, mama bear gets her present! A nice, customized cruiser with a sweet baby seat. (Excited face)
Little man had his first ever blowout while we were shopping at the mall today. Never in a million years thought I was be so excited about cleaning it up!
His medicine must be working. Watching your child suffer for 8 months with constipation and painful poops is torture for a parent. This time, I didn’t even know he went to the bathroom. No straining, no screaming, no deep breaths where it felt like his little lungs were going to collapse pushing so hard.
AND, the best part was it was normal. Not hard chunks, not clay like. Green and soft and gross.
Proud mama over here.
What a wonderful day!
Baby bear was exceptionally good for an outing to have his picture taken with Santa. So much laughter and smiles.
He had such a good time. I love seeing him like this. I hope we can see more of it as the days go by.
Carter opened his first Christmas present from his Aunt B, Uncle Rickey and Ava today. He was VERY surprised.
I have never tried any toys that vibrate and what a mistake I’ve made! He loves the vibration.
I think it makes his tummy feel better.
We are also on day two of the new formula and medication. He started pooping with every bottle yesterday, something that’s never happened. We are having to add sweetener to the milk because it’s disgusting and he started fighting it. I think the sweetener helped.
He’s been so happy lately. I hope this really helps his system out and gives us some changes…finally.
Apparently, man is not a fan of mixed vegetables….
We saw a GI for the first time yesterday and she was wonderful. We switched formula to a completely milk free type, Neocate. We also upped his nexium and added a liquid laxative he can take with each bottle. He seemed way happier this morning than he usually does. Hopefully she can get man happy and well!
It’s always nice to leave satisfied and I think it’s the first appointment I didn’t leave in tears. That, my friends, is success.
We are still waiting on a few blood tests, but so far so good. His chromosome analysis was clear. His repeat newborn screen was clear. His lactic acid level was clear. His ammonia level has dropped but is still slightly elevated. We still don’t know why.
I’ll take it. I’m finally excited about Christmas.
Man is going to LOVE his gifts.
I’m thinking a lot about little man lately. He takes up most of the day in my mind.
Bloodwork yesterday was a nightmare. The nurses, who are wonderful, couldn’t find his itty bitty veins. They poked and prodded for almost 3 hours before we were successful.
So now, we wait. Again. And I’m nervous and scared. And tired of posting such awful crap!
What I need to be thinking/talking about is his little big accomplishments. He is playing with toys. I love to watch him notice a light and how big his eyes get. Everything is amazing to him. And watching him be amazed is the highlight of my life.
I want to ask, for anyone reading this, that you just slip him in your prayers each day. Pray that whatever is going on is treatable. Pray that he, and we, will be ok. Just pray. There is nothing stronger than the power of prayer.
Little dude smiled at me when I spoke to him tonight.
No physical touch, no tickling.
I just kissed him and talked to him and he smiled!
Excuse me while I explode.
Chromosome test isn’t back yet, but man’s pediatrician called today about the last blood test.
His ammonia levels are elevated. What this means, no one knows yet. She spoke to a geneticist and they *think* he isn’t metabolizing something his body needs, like protein.
We are going to have to go back next week for another blood and urine test. Dependant on those results, we might need one more blood test. Then off we go to visit a geneticist.
What in the world.
Don’t google baby ammonia levels elevated. It’s a nightmare.
Other than that, man was perfect at physical therapy. His head control is getting better everyday!
I mean, this man is beautiful. Ain’t he, though?