Annnnnnd just like that, this guy wakes up, and now I'm swatting him off the computer keys while he's watching Cars in bed with me. At least I got the first 10 minutes of my movie in.
Last night, we went out for one of my husband's friends birthdays. These kinds of nights always seem to present themselves just when you need them. When you get all too consumed by life with kids, and just need some time to yourselves to be adults again. I got caught up with a few ladies who I hadn't seen in a bit, and they were quick to divulge they had read my blog, and wanted to share how it touched them. Some laughed and some cried, but each of them told me to keep writing. I'm thankful and humbled by these words of encouragement.
It is difficult to remember it's OK to occasionally remove myself from whats going on with Toby's health and just have fun. After all, he LOVES sleepovers at the grandparent's house, and who are we to squash all that fun. I slept till 9!! It's amazing what a long, peaceful sleep will do for the mind - without suctioning out the snotty 6 month old and getting interrupted for babas by the 2 year old . I set off to pick up the kids, and was thrilled to see their smiling faces, Toby running around crazy, in a pile of toys on the floor. His big, blue, innocent eyes confused - because he wasn't sure if he was happy to see me or if he was sad he was going to have to leave. We packed up our things, and I hauled Toby out to the car to get him set in his carseat. There on the floor, I spotted something I hadn't seen before. It was a neon green bandaid with bloody gauze - an awful reminder, slapping me back into worrytown for no good reason. I remember watching Toby from the front seat rip it off in victory after our blood draw on Friday. I freeze for a moment at the door, recalling the 10 minutes I had to squeeze him tightly on my lap, pin one arm down with one hand, and turn his head while hiding his eyes with my other hand. I bury my face in his hair and try to remember to tell him everything is going to be fine. Its a struggle, because he's screaming out crying, big wet tears falling down his face. While he's squirming, I'm doing EVERYTHING I can to prevent myself from crying. I have to take my thoughts elsewhere, and I feel guilty for doing so. I should be talking with him, interacting, but if I bring them back to present moment, I know the waterworks will start. So I'm usually silent, motivating myself quietly to be patient and steady. Toby doesn't have good veins, he gets them from me. They usually have to stick him more than one time, and this time was just like the rest. Only this time, something broke my heart even more. As the plebotomist let the teal blue tourniquet loose on his arm, after unsuccessfully finding a good spot, Toby squeaked aloud - "Aw Done?". I paused and looked up at the lady in pink scrubs, whose wide eyes looked back while she responded, "Did he just say All Done?", a glimmer of empathy in her voice...
"Yes... He did"
He's had this done so much that he knows when they release the tourniquet they are almost done. My heart aches that he is so observant. Back to reality - at least I had had the last 12 hours without worrying. I'll take these little moments when I can.
It is difficult to remember it's OK to occasionally remove myself from whats going on with Toby's health and just have fun. After all, he LOVES sleepovers at the grandparent's house, and who are we to squash all that fun. I slept till 9!! It's amazing what a long, peaceful sleep will do for the mind - without suctioning out the snotty 6 month old and getting interrupted for babas by the 2 year old . I set off to pick up the kids, and was thrilled to see their smiling faces, Toby running around crazy, in a pile of toys on the floor. His big, blue, innocent eyes confused - because he wasn't sure if he was happy to see me or if he was sad he was going to have to leave. We packed up our things, and I hauled Toby out to the car to get him set in his carseat. There on the floor, I spotted something I hadn't seen before. It was a neon green bandaid with bloody gauze - an awful reminder, slapping me back into worrytown for no good reason. I remember watching Toby from the front seat rip it off in victory after our blood draw on Friday. I freeze for a moment at the door, recalling the 10 minutes I had to squeeze him tightly on my lap, pin one arm down with one hand, and turn his head while hiding his eyes with my other hand. I bury my face in his hair and try to remember to tell him everything is going to be fine. Its a struggle, because he's screaming out crying, big wet tears falling down his face. While he's squirming, I'm doing EVERYTHING I can to prevent myself from crying. I have to take my thoughts elsewhere, and I feel guilty for doing so. I should be talking with him, interacting, but if I bring them back to present moment, I know the waterworks will start. So I'm usually silent, motivating myself quietly to be patient and steady. Toby doesn't have good veins, he gets them from me. They usually have to stick him more than one time, and this time was just like the rest. Only this time, something broke my heart even more. As the plebotomist let the teal blue tourniquet loose on his arm, after unsuccessfully finding a good spot, Toby squeaked aloud - "Aw Done?". I paused and looked up at the lady in pink scrubs, whose wide eyes looked back while she responded, "Did he just say All Done?", a glimmer of empathy in her voice...
"Yes... He did"
He's had this done so much that he knows when they release the tourniquet they are almost done. My heart aches that he is so observant. Back to reality - at least I had had the last 12 hours without worrying. I'll take these little moments when I can.
All Done Dad?
Whats Next
Our Friday meeting was with our GI doctor. We were greeted like always and escorted back to an exam room. This time though, we didn't go to a usual exam room. This time, we were taken to a different kind of room, one with 2 chairs, a coffee table and a couch. A desktop computer hitched up in the corner, and on the coffee table, a box of tissues.
I'll walk on my own, thank you very much....
Of coarse, this change in scenery had me sweating. Why were we in this room? Are they about to give us some awful news? Oh dear Lord, let this not be happening right now. Toby on the other hand enjoyed the extra space - more surfaces to maneuver around his hot wheels.
Thankfully, this meeting did not perpetuate bad news.... His GI doctor just wanted to chat with us in person, to give us a recap of whats going to happen over the next month. I'll do my best to describe his next steps, as they were described to us.
This past week, Toby's pathology results had been taken to a panel of doctors who meet every other week at Children's (where he is being followed) to discuss cases that are not straightforward. Ones that would do best with a group of experts putting their heads together, trying to solve the mystery. This panel was all in agreement with his doctor, that the first perpetrator we should be investigating is Celiac Disease. Toby has already been tested twice for this, and both times the results were negative. I am told there is a more aggressive panel of tests that can check for this disease, and our blood draw on Friday was going to start the process for that. For those not aware of what Celiac Disease, it's essentially an allergy to gluten, treated mainly by leading a gluten free diet. This is wheat, barley, grains..etc. While all of his symptoms are in line with Celiac Disease, there are some oddities about Toby that aren't quite in line. For instance, Toby isn't growing taller either. One would think a child who has trouble absorbing nutrients would be underweight, sure, but it wouldn't necessarily effect their height. He could be of normal height, just skin and bones. Secondly, he has some other characteristics that are common in genetic disorders - like a sharp curvature of his little finger, small narrow feet, a more normal size head for his age despite the smaller body, and a high pitched voice to name a few. These are all things I have learned from doing research, and info I have received from other parents who have children just like Toby.
GI is conducting a few more tests outside of Celiac Disease, in preparation for our meeting with Hematology/Oncology next week. At this meeting, we will be talking with one of the best immunologists around, who will help get to the bottom of Toby's abnormal CD levels in his blood (the blood cells that comprise the immune system). He will review the results from our labs that were drawn on Friday and order more blood work based on that information. The week after we meet with Hem/Onc, we have to meet with Genetics. This group of doctors will run more blood work on Toby to look for genetic conditions that are in line with his symptoms. Like I've said many times, there are so many different diseases that have the same characteristics as what Toby presents, so we are slowly but surely narrowing down the culprits. After these two specialists, its trips back to GI and his pediatrician.
While I would love to look at a blog like that all the time, in the online world, I'd gather she'd be pretty boring. All that said, I don't want her to look back at all this in sixteen years and say, where was I?
How do I balance my time and attention when one child requires so much more of my energy? When his little face fills the gaps in my thoughts with fear, while my sweet, smiling cherub of a daughter sits in the corner, eating her fingers, and drooling on her blanky. Does this feeling of guilt ever go away? Will I ever feel like I'm doing it right? These are open questions to my readers - if you have experience with this, please share with me your thoughts. Tell me how you do it.
I've gotten us up to speed - from the last two years to present day. Now, you'll have to wait with me, as we uncover new discoveries together.
Until then, I'll just have to keep writing.
Thank you for Listening,
Lindsey
Questions and Guilt
We have a lot on our plate over the next 4 weeks, not to mention a BIG birthday for mister T. On April 10th, Toby turns 2. What a wonderful gift God has given us. With all of this going on, more guilty thoughts swirl in my mind. What about my daughter? I know what your thinking, she's only 6 months old and has no idea what a blog is, or even that Toby is sick. I still feel remorse. Am I not paying enough attention to her? Can she tell already my mind is consumed most of the time by her big brother? Should I start a blog about her - call it something like Sweet Little Chubbs - and post pictures of her chunky, happy smile everyday?
This is Lyla when she's sick.... Heartbreaking i Know
While I would love to look at a blog like that all the time, in the online world, I'd gather she'd be pretty boring. All that said, I don't want her to look back at all this in sixteen years and say, where was I?
How do I balance my time and attention when one child requires so much more of my energy? When his little face fills the gaps in my thoughts with fear, while my sweet, smiling cherub of a daughter sits in the corner, eating her fingers, and drooling on her blanky. Does this feeling of guilt ever go away? Will I ever feel like I'm doing it right? These are open questions to my readers - if you have experience with this, please share with me your thoughts. Tell me how you do it.
I've gotten us up to speed - from the last two years to present day. Now, you'll have to wait with me, as we uncover new discoveries together.
Until then, I'll just have to keep writing.
Thank you for Listening,
Lindsey
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