For the past couple of days, every so often, I can catch Carter’s attention. He actually looks into my eyes. It’s only happened a handful of times, but it’s happening more frequently, even to the… More
I guess I should indicate that I am specifically calling this introductory post, Today’s outlook, because an outlook on any given day can be drastically different. I will say that although life is what you make it, I never in a million years would have guessed that our family with little man would be the way it is.
I should also preface that paragraph to tell you why. We are your typical, southern family. Married to the guy who roped my heart in when we were just teenagers. We grew together in many ways and in 2014, decided to start a family. After a devastating miscarriage, we were successful and I carried a beautiful baby pumpkin for 8 months. We elected not to learn the gender because it didn’t matter to us either way and I have to say, it was one of the BEST surprises in all my life.
Pumpkin made the decision to introduce his/herself a whole month early. Easy pregnancy, non-complicated labor, and 7 hours later, I got to meet Carter Keith. I will never forget my husband yelling out, “It’s a Boy!!” It was beautiful, raw, emotional and a scene I play over and over in my head daily. Carter was a healthy 6.3 lbs and laid on my chest, we stared at each other for what seemed like ages. He told me he loved me, or maybe I just knew it, and I cried because this moment beats every other moment in all my 31 years of life.
Fast-forward to today. Carter has weekly physical therapy and we are awaiting an EEG and MRI appointment, taking place in the coming weeks. The physical therapist, happy with the slow progress, has also recommended us to start receiving occupational therapy. Anything for my little, right? We will do whatever it takes. But how did we get here? It is a question that will never escape my mind. We, doctors included, still don’t know what we are dealing with. Carter isn’t progressing as he should, socially or physically. He has vision problems no one can figure out, movement problems no one can figure out and two VERY motivated parents pushing for every test, visit and therapy we can get him into.
The last 7 months have been the longest, hardest road I have ever been on. I have up days and down days. My up days are REALLY up and my down days are REALLY down. Today falls a little in the middle. The sweet, little rascal I call my son is sleeping and I am watching him. All the love in my chest feels like it will burst, but along with that, I have spent hours, days, months searching his symptoms trying to come up with some sort of peek into our future and what that looks like. Because right now, this limbo is tearing me apart…
How long, I’m not sure. Im so proud of my dude. His blood draw was simple and easy and he did so well. Not to say he was calm by any means. Nevertheless, he did beautifully.
The chromosome array will probably take weeks or months to come back. But it’s done. The blood is out and gone. I’m happy to be in this moment.
He is growing…slowly. Still following his own curve. His head is, and always has been, on the chart and growing. Something the pediatrician is very happy to see. It means his brain is growing at the right rate. Small dude, big brains!
We have started to brush his two very small, not even grown in teeth. He likes it, so I like it. He has also increased his food intake with no more gagging, which is great.
His check up noted how very floppy he is in his trunk, but his hips and legs are perfect tone. So though he cannot sit up or reach to hold anything, he will stand forever.
That’s where we are today! Hopefully we will have some updates soon regarding his testing. Prayers all will be well are always welcomed.
The last few weeks have been difficult for me. It’s hard to have an identity anymore when your life is engulfed with needs as high as Carters.
I fell back in the damn hole and I’m digging myself out again. Or trying to. Having to constantly fight for things my son needs is exhausting and really unfair. I never realized it wouldn’t be as easy as saying, hey, my sons throat burns like hell when he burps. So much so that he screams and chokes. And this happens every single day, multiple times a day. Can we get some shit to help him?
If you are wondering the answer is no. It’s always no. So I fight. And appeal. And fight more. Until finally something is approved. Then they tell me my copay is 70 bucks. 😂 Our healthcare system is junk. Junky junk junk.
Anywho, tomorrow is Carter’s Chromosome Array. Crappy Humana finally approved it, but as stated in their letter, that doesn’t mean they cover any of the cost.
I’m scared and excited. Like usual. I want an answer. I need one. I feel like my life depends on it. None of this makes sense to me, so an answer of any kind will help.
Carter’s delay is growing larger. He doesn’t really pick up any new skills so it’s hard to teach him anything. Honestly, it’s like we don’t exist much of the time. He doesn’t look at you when you speak, so the teaching is few and far between. We keep trying, though.
We also recently saw a chiropractor to help with reflux. We have been twice, but no improvements. He recommended us to see an osteopath, so that is scheduled for June. I don’t have faith in much, so if it works then great. If it doesn’t, well at least we tried. I’m not pessimistic, just a realist. I got hyped up real bad in the beginning and nothing worked, so I keep my expectations severely low.
I am scheduled to see a counselor soon to help me deal with Carter’s issues. I thought I could handle it all on my own, sprinkled with some anxiety meds, but it’s not cutting it. My thoughts are dark and they are deep and I need to be healthy for my husband and my son.
It’s been 10 days since the genetics team recommended the chromosome micro array. 10 days of frustration. Waiting on insurance to see what or if they can even help cover the cost, that cost being over $1500.
It’s like pulling teeth trying to get any sort of assistance. Everything related to special needs is entirely too expensive.
In addition, my man now has two teeth and is growing like a weed. Which means TANTRUMS. His new favorite move is slamming his legs down on whatever service he is laying on. And if he kicks you, more points to him.
He’s been working hard in therapy and achieving a few goals. Nothing spectacular, but every inch stone he reaches is very exciting. He finally reaches the ground (kind of) in his little walker, so he’s learning to propel himself forward. That’s always fun to watch.
We will be going to Texas soon to visit his Aunt and her family. I know he will be super excited to travel 🙂
Not too much of an update tonight, but thinking of everyone who supports us and reads my blog.
So, my dude has a new blood test that is being ordered. This one, which I thought we already had, will be looking at a chromosome deletion or addition.
Our geneticist believes that with the case of his constant vomiting, that means every few minutes during day and night since birth, his problems lie within the metabolic disorders. I looked that up.
One positive note is he has been tested and ruled out of hundreds of disorders. I’m also a realist so the negative part to that is there are still hundreds he might have.
I’m crossing my fingers we get an answer with the microarray. We have a plan if we don’t, but I don’t want to put him through more tests. If this is negative, we will try whole exome sequencing. This test is the most up to date test that can be run to look at your genes or DNA. This test is also around $6,000.
I don’t want to have to fight for it. Don’t doubt me, I will, I just don’t want to.
Pray we get an answer to this test.
Parenting a child with a delay or disability, known or unknown, is hard. I imagine parenting any child is difficult, but this journey is exhausting. I feel like I have to put on this strong, brave face everyday and pretend that I am getting through this easily.
People especially don’t like to hear me mention the difficulty. They don’t want to hear that some days I just don’t want to do it all. Some days I’m so worn out, so exhausted, so anxious, that forming words is difficult.
I constantly think of my life pre-Carter. I had no idea what was in store for us. I think of refusing genetic testing while I was pregnant because I thought I could handle anything. I also thought it was a one in a million chance there would be an issue because I did everything right.
I got my one in a million. Do I feel lucky? Sometimes. Do I feel unlucky? Sometimes. I struggle with my emotions toward this situation. It’s also difficult to make people understand that I do NOT struggle with my emotions toward my son. He is my life. He is all I think about every day. I love him with a love I can’t describe.
I have also noticed that there is a permanent knot in my chest and stomach. It never goes away. The appointments, the therapy, the tests, the not knowing…I live my life scared.
Today was the day I noticed it. I felt a panic attack coming on this morning traveling to the geneticist visit. I felt sick after I ate lunch and I’ve felt sick since. I can’t eat dinner.
How do I take care of myself? Even if I try, I still feel like crap.
Hoping to get more answers today only led us to more damn tests. More pricking my son with needles and more waiting.
God, why? Why can’t this be just a little easier? A little cheaper?
I need to rest. I need to get out of my head. Being in there takes me to some awful places sometimes.
Genetics is in the morning. Early. In another city.
I have never wanted something done and over so bad in my life. I’m on edge. BUT handling it better than the last appointments. Go me.
Carter had his monthly GI appointment this morning and it went well. We are finally getting to take him off of baclofen. Yay! One less med. He is also pooping pretty normally so we are taking him off milk of magnesia, as well.
He hasn’t fought not one bottle since putting him on elecare jr., since it’s vanilla flavored. So the doctor gave us strawberry, chocolate and tropical to try. He now gets a variety of flavor, which I’m excited about and he really likes the strawberry.
The glasses have been a work in progress. No immediate changes, but over the last week he seems happier and more playful. He is reaching with both arms on his tummy now. Sitting up better rather than folding like a sandwich. Tolerating his tummy so much better.
Tis a good day. Now on to tomorrow…
Our first visit with genetics is this Thursday and I can’t sleep. I don’t know if these two things are intertwined, but I can’t help but believe it.
I know I could go and run tests and receive no answer. I also know I could go and run tests and leave with one. I don’t know what I want. I feel so selfish wanting to know in terms of it being something I did. Something I passed on unknowingly.
I guess I mainly want to know so his care and treatment fit the diagnosis, not random therapy to treat a symptom. I want the very best for Carter. I don’t feel like I do enough for him. I feel like I should be doing a lot more.
I got a chance to chat on Sunday with two women who have gone through/are going through this same journey. Our children are all different, but have similar qualities. It was so nice being able to chat with people who understood me. No explaining these medical terms. No pouty sorry faces. Just a lot of humor and understanding. I enjoyed the hell out of it.
I guess I’ll try and sleep now. Mountains will start moving at 7:00 when little man decides to wake. And I better be ready.