- I’ve made three appointments for Grayson- one pediatric opthamologist, one pediatric neuro-opthamologist, and one pediatric neurologist. None of them can see him until May, although I talked to the nurse at my pediatrician’s office this morning, and she working on getting him in sooner with the neurologist.
Thank you everyone who read and/or commented on yesterday’s post. I am so blessed to have such wonderful, supportive friends and family. I love you all.
We just got back from Grayson’s 6th month appointment. Here are the stats:
Weight: 13 pounds, 7 ounces (0.87%)
Height: 25.75 inches (20.91 %) WOW!
Head Circumference: 15.98 inches (0.74%)
Good news first- Grayson is getting tall! (at his 4 month appointment he was in the 4th%!) I could hardly believe it when they told me that number- he’s never been above the 5th% for ANYTHING! Woo hoo! Dr. D also noticed how well Grayson was tracking- he even turned his head toward her when she walked in the room!
Concerns- obviously, his weight and head circumference. Dr. D is more concerned about his weight- up until now, he’d been following his own curve, but he’s dropped off and she wants him to get back on. Since Grayson won’t take more volume than I am giving him, she wants me to increase the calories per serving- so basically mixing more formula for the same amount of water. I’ll be using my mad 6th grade math proportion skillz (cross multiply and divide!) to figure out how much he’ll get.
Grayson’s therapist also wanted me to ask Dr. D about reflux- she suspects he might have it, although I’ve never thought he has- he spits up, but it’s usually not a lot and he doesn’t seem to be in pain during or right after feedings. Anyway, Dr. D said he might have “silent reflux” (yeah, Erin, you were onto something!) where the acid rises up but never comes out. She doesn’t want to start him on any medication now until we see how the extra caloric intake goes first, but when we go back in a month we will reevaluate that.
I told her that I need to have Grayson seen by some kind of specialist and she agreed. She mentioned his low muscle tone and lack of head control. I told her the neurologist we have an appointment with in May, and it turns out he’s one she refers to (yay!) but she also wants him seen sooner than May. She’s going to call and use her doctor-powers to try and get him a sooner appointment. She also mentioned I might look into a pediatric neuro-opthamologist- I told her I have several recommendations of opthamologists and I’d call her with the names.
So, I feel really good after our appointment today. I really, really love our doctor- she genuinely cares about Grayson and I feel like she really listens to me and considers everything I say. Like I said, we’ll go back in a month for a weight check and hopefully we will have been seen my the neurologist by then!
I hate crying in front of other people- I get so embarrassed, which makes it harder to stop crying. For some reason, if I’m going to have a meltdown, it’s always at church. I should know by now to carry tissues in my purse, as I’ve been losing it at church for years. So I always either end up squeezing my tear ducts in a feeble attempt to stop their production, or trying to wipe away the tears with my fingers. Then I end up with an anxiety attack the rest of the service wondering if I have mascara all over my face and/or if anyone is going to ask me if I’m okay (No, I’m not, but don’t ask me about it!).
Last Sunday, during the communion song, I felt it coming. The wave of salty liquid that would fill my eyes as I would will it not to spill over on my cheeks. FAIL. I knew my dreaded part of the service, even on a non-crying, happy day, was coming next- the Fellowship Greeting. I know, I’m not supposed to feel any negativity about a part of a worship service, but I have always found Fellowship Greetings to be AWKWARD and for this shy girl, extremely anxiety-inducing. Also, sidenote- I am NOT a germophobe but I always feel an intense need for hand sanitizer after shaking strangers hands in church- but then, do I look rude if I pull it out of my purse? I left the room quickly, hoping not to draw any attention to myself. Then I went and cried in the bathroom stall as two silly tweens laughed in front of the mirror for what seemed like forever- (where were their parents?!).
Why the meltdown? I can’t pinpoint an exact cause, or trigger- cliche, but I think I just reached my breaking point. I’m stressed- about Grayson’s development, his new eating issues, his lack of a real diagnosis. I’m worried about money. I’m stressed about my marriage-marriage is hard enough when you add a baby, but then navigating this completely foreign territory- a baby with a disability-well, it’s just hard. I’m stressed about the dogs- I love them and they are truly family members, but they are a lot to handle and take care of.
I know I need to take care of myself emotionally. Writing on this blog helps a lot, and all your comments on my posts are so appreciated and I thank you for taking the time to read my ramblings. I am also going to go back to the counselor I went to a few years ago, just to get some of this stuff straightened out in my head. She saved me in a very dark time a few years ago, and I am really glad I’m going to have the opportunity to talk things out with her again.
Next Sunday is baby dedication day- so NO crying in church this week. At least from me. Now Grayson in church for an hour- another story, I’m sure.
Grayson’s occupational therapist came for a visit today. Bless her heart, she is the sweetest woman in the world- she just loves Grayson, even though he screams his little head off most times she comes. But she holds him tight and sings to him until he calms down- it’s so sweet. Today, little McFussy was in rare form- he had the fussies even before she arrived, and they just escalated from there. We finally got him calmed down enough to work on our
favorite new challenge…solids.
Apparently there are a lot of mechanics that go into swallowing food, having to do with your tongue, palette, chin, and head (oh, that silly head of his). The mechanics haven’t clicked with Grayson yet, unfortunately. Our first challenge was getting him to sit in his booster seat. As you probably noticed from this post last week, we have to stuff blankets around him to get him to sit up straight enough to eat. After much experimentation, we decided that we are going to eliminate that part of feeding right now and I am going to hold him to feed him. Grayson needs to focus on one thing at a time- food in his mouth and holding his head up straight are too much for him right now. We worked on putting cereal in his mouth the right way. Part of me felt really stupid having to have someone show me how to put cereal in my baby’s mouth. Then we worked on touching his chin to make a seal so he would swallow. He swallowed 2 times in about 10 minutes…frustrating. She told me it’s dangerous if he doesn’t swallow- the food could just sit in his throat and then slide down when he’s not expecting to swallow, and he could choke. Grrreeaat.
So just add this new little stumbling block to the list. I knew he definitely wasn’t ready for solids at 4 or 5 months, because of his motor development. But he’s 6 months now, and the problem isn’t just his motor skills. I really, really want an answer as to what is going on with my baby. Why is he having to work so hard to do such simple things? Why does he clench his muscles so tight and stiffen up when we put something in his hand? Why is he so tiny? And why is he soooo fussy these days? (and yes, I realize the fussiness could be totally unrelated to any of this, but it’s still frustrating).
We are working on getting some other medical opinions. We made an appointment with a neurologist, but he can’t see him until early May. I am going to the hospital on Friday to pick up copies of the MRI scan to take to another doctor- maybe someone else can give us a clue what’s going on.
The OT is dropping by again tomorrow morning for “breakfast”- I told her Grayson’s best time is early in the morning, so we are going to try the feeding thing then. I am praying for restful sleep for my little guy tonight so he’s ready to chow down in the morning.
And, on a totally unrelated note, here’s another cutie pie picture taken by Rebecca from our little photoshoot the other day- I just love his tiny little Chuck Taylors!
Six months- wow! I wonder how many hours of sleep I’ve lost in the last 6 months? Hundreds. Diapers changed and bottles made? Thousands. Kisses on those sweet little cheeks? Millions. How many times I’ve been amazed with love for this little creature? Zillions.
|“I just don’t get it”|
I have a true boy on my hands- I discovered this morning that Grayson loves cars. Well, maybe not the wheels, the shiny paint, or even the actual car itself…but the sound a car makes. Or the sound that Mommy says it makes.
I put a bib on him this morning that has a car on the front. He was a little bit fussy, so I said, “Grayson, the car goes Zoom! Zoom!”
Bwaaahahahah! You would have thought we were at the Improv, the instant laugh that came out of that kid.
Hahahahahahahaha! HUGE belly laugh.
Hmmm. I tested him. “Grayson, a frog says, Ribbit! Ribbit!”
Kind of weird. But adorable at the same time.
I thought, surely he won’t do it for the camera. Grayson likes to clam up and forget all his tricks the instant that button is pushed, as I’m sure is true for most kids. But Zoom! Zoom! is just too funny, I guess. He did hold back a little bit, but you get the idea…