Noah's Neurology Appointment

We just returned home from Noah's second neurology appointment. As with most visits they can only give you a best guess. The neurologist said she didn't detect that Noah had any problems with his left side and if anything has equal movement whether that be good or bad on both sides. He is still stiff and his tone isn't like a regular baby, but we know that. They suggested another EEG around nine months. They also suspect that Noah has an acid reflux issue and his problems eating, but they want to put him under to do a GI test and that's something that Chris and I aren't prepared to do. I don't understand that if they agree he has an acid issue why they can't find him relief without putting him under for some silly test.

Noah also weighs 14 pounds and 8 ounces. Only 4 ounces he's gained in a month, although I'm not surprised since he's not really drinking as much milk as he probably should be. And again the neurologist can't really tell us what Noah's future is going to be like, she says that will only be evident around 1-2 years of age. Chris remains beyond hopeful, his hope and love for Noah is nothing less than amazing. I have hope, but I try to guard my hope and my heart with the reality of what we all could be facing as a family.

I can't say that I really feel that the older Noah is getting that the task of being his mom gets any easier. He fights sleep beyond belief. Actually fighting sleep is an understatement. We're up until 10pm at the earliest trying to get Noah to sleep even if we've deprived him of a nap since 3 or 4 in the afternoon. And sleeping through the night is foreign to him. The screaming in the car seat is non-stop even when you know he's exhausted, I honestly think he would scream for entire hours on end.

And there is no baby book that fits a child like Noah. There is no cry it out method, there is no gently pat him on the back, because Noah isn't like everyone else. And it is hard when you feel that you can't join the rest of the families out there. Chris and I are so limited on where we can go, what we can do. And I do look at pictures of family and friends and look at the perfect families that are beyond healthy and happy. It does hurt, because that's not life for Chris and I. And it's so hard to explain to a family that doesn't know the struggles of how hard it is to care for a baby like Noah. I do know that many just simply can't understand, so they're only suggestion is go seek therapy, get over, get past it. I wish it were that simple. This is like having someone poke at your heart with a dull toothpick each day. It stings, it burns, your cry. Chris and I both cry together. We feel often times very alone in this. The rest of the world gets to keep moving and we're standing still holding God's very precious but very difficult miracle. Chris and I have these emotions that are so muddy. We're happy and sad and mad all at the same time.

We are constantly praying and hoping and begging. There are so many elements to this, from how we've had to dump just about any asset we ever had to get Noah's medical needs met the best we can, figuring out how to pay the bills, how to feed and clothe ourselves. Chris has needed a new pair of shoes for over four months, but refuses to take away from the family to buy them. We have a truck that is failing, a baby that won't stop crying and arching and that you really can't put down. And every day there is something else that goes wrong, and the mountain just keeps getting higher and higher.

Noah's therapy situation has also increasingly grown more complicated. Centura Home Health care for whatever reason put in a request to Medicaid to continue his therapy, which Medicaid approved. This blocks Children's Hospital from getting approval and we now have to resubmit a request to Medicaid for Children's something that will take another three months. And Children's Hospital also said that Medicaid may ask us for money back for services that Centura Health has not been providing this entire time. Even more great news. I know that Noah could benefit so much from therapy, but there seems to be road block after road block. I make so many calls in a day, and I'm ashamed to say I finally lost my cool and used language that is not of my character. Did it make a difference? Sadly no, I wouldn't expect that kind of behavior to. Did it make me feel better? Maybe for a few minutes, but it didn't accomplish any better results than the gather bees with honey approach.

Chris and I are so frustrated and tired, we ache for things that are not there, we pray for hard for Noah each and every day. For relief for all of us. Taking care of a baby I'm sure is hard, but taking care of a baby with challenges is beyond anything I ever imagined. Every day I tell myself it will get better the older he gets, it has to get easier. For most babies that probably is the case, they'll out grow colic, or get over sleep issues, or become better eaters, but for Noah there is no guarantee that any of that will get any better.


I find myself starting to question God, which I know one is never supposed to do. I don't know what he was thinking when he thought I'd be up for this task. I don't know that I'm doing him proud. I'm frustrated a lot of times, I'm sure Noah is bound to be picking up on my less than stellar moods, I'm mad that I changed my mind and decided to have kids, because now I'm put a soul here that is suffering and it may even get harder for him as he realizes what a cruel world this can often times be. I pray he can look past that better than I have all these years to find the beauty. I worry about his future and how unkind it may be.

My dogs are also suffering from lack of attention, I feel so bad for them, and I don't have enough arms to make them happy. My biggest one is carrying around a stuffed animal in her mouth non-stop and crying, my littlest one goes off and hides in small places and I have to go hunt her down like a cat in some corner. Even the turtle seems to glare at me with those eyes that scream you're not loving me enough. All the while my heart is breaking for them too.

I would love to just wake up someday and have someone tell me it was all a very bad dream and that everything has been restored. I love Noah so deeply, which makes my pain for him and me so very hard. I can't fix it, I can't undue the damage, I can't go backwards and change the circumstances around his birth. This is Chris and I's life for the rest of our lives.

I continue to pray today and every day that God will just get me down this road. I'm lost I need a darn roadmap! And there's no one on this road to ask for directions.

Love,
Stacy, Chris & Noah