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Tag Archives: kennedy krieger

“Well at least you know…” Part 2

“When can I get my blood shot?”

“Is it time for my blood shot yet?”

“Can we get my blood shot now?!”

Never in my life would I imagine that I would have a child who was so intent on having labwork done. I had been honest and upfront with Marley about what to expect at our evaluation appointment. I let her know that the doctor would be checking her blood for cholesterol. She needed to know exactly how that would happen, so I showed her some phlebotomy diagrams and instructional videos on YouTube. She was able to see the vacutainer, butterfly needle, cleaning procedure, etc. shown step by step. It seemed to calm her fear that the tech would hit her bone.

For days before we left she would ask if it was time for her ‘blood shot’ yet. Done with hearing “soon” or “tomorrow”, on the way to Fredericksburg to stop for dinner she asked if we were getting the ‘blood shot’ that night when we arrived in Baltimore. In an attempt to avoid a meltdown over this (again), I told her that it was really late but that I would call the hospital when we left and see if they were still open.

Yes, I lied to her. I had tried unsuccessfully to explain it to her, and I’d like to think that overall I do a pretty good job of keeping her in the loop and answering any questions she throws at me. At this point, though, I was exhausted and no matter how many times I told her when the blood draw would happen she is not the best with timelines.

As we got down the road, she would ask once more. I told her that I would call, but that it was late so they may be closed. She then surprised me. “If they are closed, do we get to go to the hotel first?”, she asked. I told her yes, and asked if that is what she wanted to do. She said yes, that she wanted to get to the hotel, but that I should still call the hospital first. I breathed a sigh of relief– it’s so much easier when she’s on board!

From the moment she woke up the next morning, she was again fixated on the blood draw. She kept repeating her phrases over and over, despite being told ‘later’ or ‘soon’ or just plain being tuned out as the first doctor spoke with me. When it was finally time to go to the lab, Alli walked us down. Marley was excited to take a ‘secret tunnel’ Alli showed us which was painted in an underwater themed mural. She ran slightly ahead and pointed out animals along the way.

Once in the lab area, Marley and Killian played for a bit before it was time for Marley to go in. She jumped right up on the stool and thrust her arm out. The tech was surprised and suggested that Mo sit on my lap to be a bit more comfortable. When the latex band went on, she was not impressed. Knowing that ‘tight’ frustrates her, I had prepared her for the fact that this would be tight on her arm but that it is not on for long. In retrospect, maybe I should have tried to show her by a quick visit to our pediatrician’s office for a ‘this is how the band will feel’ rehearsal. (Yes, Dr. Young is just that awesome!) Eh, hind sight & all that jazz… Anyway, she was not a fan of the band, which lowered her tolerance just enough for the needle to bring on the tears and complaints. She kept her arm perfectly still despite wanting to be finished. She didn’t move a muscle or attempt to pull away. We are all shocked at how well she did. After the blood draw was over, the tech wrapped Mo’s elbow in gauze tape. (That stretchy bandage material that sticks to itself.) Well, to get it to stick, you have to stretch it a bit– you know, tight. Pink and purple hearts be darned– Marley wanted this thing OFF. Alli and I both offered to take it off for her which would have been fine except for the fact that she was convinced that she was going to bleed out/fall off (or something) and wouldn’t let us near it.

I still had a good bit of paperwork to do and Marley was given a boxed lunch to eat. We sat in an exam room in the lab area and a few moments later Marley declared that she needed to pee. Since I was eyeball deep in paperwork, Alli asked Marley if she could walk her to the restroom. Marley was fine with that and let us know that she would need help with her pants with a worried “But my arm is BROKEN!!”. ūüėČ I nodded to Alli that it was ok, and the potty trip was uneventful. After a bit longer, Marley was done with what she could eat of the lunch (lettuce from the sandwich, pretzels, a cookie or two, and a Sprite), the room was beginning to get stuffy, and Killian was not happy to be in the stroller. Alli suggested that we could go back to their office building and set up in a room that was larger for me to finish while the kids could be less confined. That was perfect, and we headed over.

I worked my way through the pages of questions. At one point there was a sheet that listed symptoms/disorders and with check boxes under the headings of “Mother”/”Mother’s Mother”/”Mother’s Father”/”Father”/”Father’s Mother”/”Father’s Father”. Without going into too much detail, I think this would be an excellent checklist for at risk teens who want to get pregnant– it was enough to make ME reconsider having kids… and mine are already here! ūüôā Items like “has had trouble with the law”, “suicidal”, “depression”, etc. are listed and I must say, it makes you think about what you’re throwing into the gene pool!

It wasn’t long before Dr. Tierney came in. By this time, Killian was tired and so he was on my lap nursing. She offered to give us time to finish and I cracked my typical “You’ve got boobs/I’ve got boobs” reply and she assured me that she didn’t mind a bit, so we got down to business.

I have since realized that these¬†questionnaire’s are not only about how I¬†answer the questions, but also how they are expanded upon for¬†me. When the first doctor had asked me about Marley making up words, I said yes, but drew a blank– only thinking about the (many) nonsensical words she comes up with that have no basis in reality or phonetics (which means I don’t commit them to memory since she will only inform me that I’m saying them wrong anyway). When Dr. Tierney asked, she followed with “such as creating other words for¬†¬†things…”– THIS was what I needed. “Yep! ‘Zombie garden’ for¬†cemetery, ‘squirrel peanut’ for acorn, she does that for a lot of things!”

As we went through the many questions, she was patient and understanding when I couldn’t answer a straight “Yes” or “No”; I realized that I prompt Marley often (as I do with all the kids in an effort to teach manners and proper socialization) such as prompting for “Hello”/”Goodbye”/”Please”/”Thank you”/etc. This is all well and good until you have to recall the last time your child said this or gave a gesture (for hello/goodbye) of their own accord or in response to someone without a push. Questions like “Does Marley show you things?” “Does she point?” were hard for me to answer. Yes, Marley asks me to come see a drawing or brings it to me, but in the car or on a walk she’ll simply say, “I saw a cow/dog/airplane.” in more of a informative way than a ‘I’d like you to see, too’ way.

Thankfully, Dr. Tierney is much better at this than I am. After an hour or two of questions, observing and talking to Marley, she looked at me and said (and I won’t even claim this is verbatim; I think there was a preceding phrase¬†affirming¬†that I wasn’t nuts, and if not, it came just after)…

Marley has Autism. She’s a tough one– she can make eye contact and has an interest in being social even if it isn’t working, but she does have Autism.

At this point, I cried. I think this particular flow was tears of relief. Especially as earlier that very day, I had felt that my moments of denial and questioning myself seemed to gain the upper hand as a doctor told me that she “didn’t see ASD”. To have been so close to going home with that… and now I’m being told that I’m right. I’m not crazy. I am in tune to my child and no, this behavior isn’t typical.

She mentioned that since Marley didn’t qualify for her study, she would bring me information on another. A developmental pediatrician named Dr. Deepa Menon is doing a study on macrocephaly and Autism. I never thought that Marley having a head in the 98th percentile would be a good thing, but it seems that for now it is. (It also explains her disdain and sensitivity to ‘tight clothes’– neck holes are her #1 trigger in clothing fit.) Dr. Tierney also mentioned something that I’ve told our pediatrician and a few close people without me saying anything to her first– it’s almost too coincidental that Marley had the Myoclonic Seizures as a baby and now has another neurological issue.¬†¬†I hope to speak to Dr. Menon about a possible link as well; it’s nice not to feel like a conspiracy theorist. ¬†She then took us into her office and wrote up a letter for the school system. Since I had so much trouble with my GPS on the way in, she asked Alli to get me directions for the way home and even highlighted a map for me. She told me to take some time to process this and then send her an email or call with any questions. I thanked her and joked that I had already decided to limit myself to sending Alli one email each week with all my questions from the days prior so I don’t flood them. We said our goodbyes and were on our way.

The trip home nice, the kids both slept the entire time. I called Ben and briefly explained things to him. I sent a text to our pediatrician to give her an update as well. Traffic was typical, but decent for rush hour in DC. I woke Marley & Killian up a little over an hour from home to stop for dinner/snacks and to get a Cinnabon. I didn’t expect the Cinnabon signs to lead me to a truckstop, but they did. It was a huge one and quite the adventure for the kids (ok, and me, too!).

Chlo√ę and Ben were glad to have us back and the littles were glad to see them both.

I will say, I was blindsided by how right Dr. Tierney was. When she said to take time to process this, I didn’t ‘get’ it. Like the soda for the road that Mandi ordered me at Sammy T’s, I didn’t think I’d need it.

I was wrong.

 

 

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