I finally have a bit of time for an update!
First off, the dietician at the IWK that has been working with us is leaving (if you have me on facebook you most likely already know this). She’s been there for 12 years and will be moving out west because her husband got a job out there. This has been a little worrying since we’re still in the beginning stages of the ketogenic diet. She’s been really awesome and quick to answer my emails and she really knows her stuff. Her last day is December 20th, and then if we have questions we have to basically wait until the 4th of January when everyone goes back to work after the holidays. When they do go back, there will be someone new there, who the current dietician is supposed to start training next week. I REALLY hope this new dietician will be just as knowledgeable and prompt with the responses.
Since I last updated we changed Emmett’s ratio from 2:1 to 2.5:1 and as of Monday he’s now at the 3:1 ratio. He’s been starting to get a bit more seizures so we’ll see if upping his fat intake will help. But he’s still extremely lethargic and not himself. It’s really been bothering us. I haven’t heard him laugh since he’s been on the diet… which has been over a month now. All he really wants to do is snuggle (which I am soaking in like you wouldn’t believe) and sleep for the most part. He’s slowly getting some energy back, but I feel like he’s regressed 1 year. It’s heartbreaking. He has a hard time holding his head up, he doesn’t want to get up on all fours anymore, doesn’t want to jump or stand while we hold him up. He’s just dead weight. We’ve been voicing our concerns about this to the two dieticians at the IWK and they’re equally as confused. Normally when kids are on this diet they can be lethargic for the first little bit but not this long. And usually when the child has a reduction in seizures everything else improves. But it’s been the opposite for Emmett. He’s not even really attending visually anymore either. It’s making me so sad. If this continues we’re going to have to take him off the diet. Which is also very upsetting since he’s having less seizures. Bitter sweet.
He’s also lost a bit of weight lately, too. Because of this, we’ve had to up his calories which helped for a week and now his weight is a bit down again. We’ll see if this trend continues, and if so, we’ll have to bump up his calories again.
Last week he had to go for his 1 month blood work checkup at the hospital. He had to fast for this so I made sure to get to the hospital for 6:30am hoping that they’d be finished by 7:30am and then I could give him his breakfast and meds. The dietician said if we go over his regular meal time, we’d have to push the rest of his meals forward for that day too. And wouldn’t you know it, we get to the hospital and I realized I forgot his meds on the counter. We don’t live very close to the hospital, either. Ryan had to book it back home to get them while I went to register Emmett. The girl at the desk looked at the work order and said, “There is no way we’re getting all of this today.” FANTASTIC! Just what I want to hear. There was about 20 things checked off the blood work list that needed to be tested. Since he’s a wee little guy his veins are small and the blood doesn’t flow for very long. There were three nurses trying to get blood out of his arms. One nurse got some out of his left arm and then the flow stopped so they tried his right arm. Nothing was coming out of his right arm and then this old lady started to DIG the needle in deep and then was jabbing the needle quickly from left to right. I nearly took her head right off. I told her “Ok, you need to stop! I don’t want you digging around in his arm like that!” And she quickly took the needle out. The other two nurses holding Emmett even seemed displeased with her but of course said nothing. I was so pissed off. It was already 8:00am and I said, “He needs his breakfast and medication so we’ll come back tomorrow.” Ugh, I was livid. I ended up finally giving him his breakfast and meds at 8:15am and bumped his other meals by a half hour. He ended up having 6 seizures that day instead of the regular 2 he had been having since starting the diet. So needless to say, we quickly found out the importance of his scheduled meals.
We went back the next morning and thankfully they got all the “fasting” blood they needed the day before so I was able to bring him in after breakfast this time. They got a bit more out of his left arm again but still not enough. One of the nurses called the IWK to see if she could poke his toe for the remainder that they needed since he had already been there twice and the Dr. allowed it. We still haven’t gotten the results. We’ve been a bit anxious to get them because of how lethargic he’s been. This Friday we have another appointment with one of the neurologists so we should hopefully get the results then. Emmett will also be getting another EEG to see if the seizure activity has changed at all since being on the diet. And hopefully the doctor can give us some insight on why Emmett’s still so lethargic. We’re wondering if his body is metabolizing the medications different now, so that’s one question that’s been on our minds.
Life has been pretty busy and hectic for the last month. In a sense I feel like I have a newborn again because all Emmett does is eat, sleep and want to be held. I miss The Wild Man a lot. I really hope we can get to the bottom of this lethargy business. I miss his voice and his laugh so, so much.
Yesterday it was Emmett’s Christmas party at the Children’s Rehab where he goes for his PT. We didn’t stay very long because there was a lot of kiddos and it was pretty loud. Emmett was also needing a nap and very sleepy, as you can see from the photos posted below. But I helped him make a craft and he sat on Santa and got a present from him! I’m pretty sure this is the cutest photo of a kid sitting on Santa in the history of forever.
Poor sleepy Emmett! We also headed to Maine to visit my family this past weekend. There were glorious Christmas whoopies pies that needed to be consumed! Emmett also made himself comfortable under the Christmas tree.
We’ll see how tomorrow’s appointment goes. Hopefully we can get some answers in regards to Emmett’s lethargy/sleepiness and also the results of the blood work. I’m hoping for some good news so we can have a relaxing Christmas this year.
And now I must tend to my Christmas cards!