Daily/Weekly Thoughts

July 2019

Another Lumbar Puncture!

It's the Little Things!

When you say the phrase Lumbar Puncture out loud, does it make shivers go up and down your spine. Because it does to me. Literally, I just cringe and yet I have never had one done. Today Emmett will receive his 15th lumbar puncture where the specialists will remove a tiny amount of spinal fluid and replace it with an equal amount of fluid that contains the drug Spinraza.

Emmett was in really high spirits yesterday. There were a few tests at BC Children's Hospital with more this morning. Some of the tests today are not ones that he appreciates and he seriously doesn't like. He knows what is going to happen. I seriously think that he looks forward to it ... BUT he also knows that it is going to hurt. And that causes his anxiety and apprehension to build. That is normal. Hang in there Emmett, we're so supporting you! *N.B., All went well and Emmett is back home! Plus he got to watch Cars 3 and Mary Poppins Returns!

Emmett was just camping at Alice Lake Provincial Park. This was his second time camping there in RV who he calls RV (stands for recreational vehicle - our motorhome who Emmett sometimes makes talk) and he has literally been waiting all winter for this to happen. Even better was that Grandma Rhonda and Grandpa Roger were there with their RT (recreational trailer - so Emmett can easily identify and differentiate between the two). Emmett had so much fun that we'll talk about in just a bit. Right now it is time to talk about mosquitos. First off, you need to know that in an amazing twist of nature that there are really not that many mosquitos in the lower mainland area of British Columbia. It is important to say that so that people in the rest of the country can be even more envious of this geographical area which truly is God's playground (you'll see some of that in some upcoming photos). However, while there are few mosquitos all it takes is one and while camping Emmett got three mosquito bites. One on his tummy, one on his shin, and one on his forehead. You need to know that for some reason a lot of individuals with Spinal Muscular Atrophy react adversely to mosquito bites. That is Emmett. A bite causes him to have the area swell up, often break out in blisters, and be incredibly sore and painful. In fact, a mosquito bite is literally worse for Emmett than a Lumbar Puncture. Don't believe me! Then stay in the RV with Emmett overnight when he has had a mosquito bite. Oh my goodness! The pain and agony that this little guy has to endure from a mosquito bite is one that he ensures that everyone within earshot also endures. It is intense!

Soothing cream. Antihistamine. Cool cloths. Ice Packs. Heaven help you if you move that ice pack in the middle of the night because then all four adults (the tent got rained out so it was four of us plus Emmett) heard the very loud cries to get that "ICE PACK!" back on that mosquito bite. If it wasn't that Emmett was really uncomfortable and none of us were getting any sleep, it would have been rather humorous. As much as Emmett doesn't like getting Lumbar Punctures, and he obviously gets upset and says "Ouch" many times before and after the L.P., he truly is incredibly stoic about the entire procedure. While it slows him down for a day or two, within hours he is his normal happy self. In fact, one of his play stations is a hospital setup where he has been known to perform lumbar punctures. In comparison, while he plays RV an incredible amount of time throughout the year, I don't think he's ever included mosquitos in his play time! Fair to say that he really and intensely dislikes mosquitos! (Obviously, while posing for a photo while daytime it was time for Emmett the photo ham to pose for his audience.) When talking with Emmett just hours after the Lumbar Puncture we asked Emmett which was worse, the blood test (which he also doesn't like) and Lumbar Puncture OR a mosquito bite? With the logic that only a four year old can have, he looked at me like I was silly (I'm often referred to as silly grandpa) and told me that there were no mosquitos there today! LOL! But truly it is the little things, like that mosquito bite, that can sometimes just push you too far.

Mosquito bites are bad! So are Lumbar Punctures! Emmett, we are praying for you today. Thinking about you today. Bounce back quickly and we're looking forward to seeing what your next adventure will be. *N.B., Emmett has bounced back and is happy to be home.

Now to highlight some fantastic summer moments: Alice Lake Provincial Park is a campground that Emmett literally hasn't stopped talking about since his camping experience there last June. This camp is a preferred one for this family because it has full mobile phone coverage, has electrical hookups, is just outside of Squamish so in a beautiful area that is close to Vancouver, and the park roads are paved while the main paths are wheelchair accessible. All are important - but mobile phone coverage, electricity, and near Vancouver are all essential "Just in Case" items. You see, when you have a medically fragile child everything that you do has a "just in case" clause. Once you're relatively satisfied that the "just in case" scenarios are covered then you can go out and enjoy life. You build memories. You take some calculated risks to ensure that your little one is living life to the fullest. Building memories of camping, campfires, marshmallows, fishing, and canoeing that will last a lifetime. Even mosquitos add to these memories with new experiences. The bite on his shin which blistered has now turned into a scab. Emmett really dislikes this scab - it's also the first scab he's ever had. After all, he's never fallen down - at least, not like that! 

Alice Lake Provincial Park was a great trip. It was cool and wet - but fortunately most of the rain took place at night. A trip to the Sea to Sky Gondola, where his Aunt Katie and Uncle Josh got married three years ago in July, was very special for all of us. While Emmett doesn't really remember the wedding (he was only one), he will certainly remember this trip!

You can click on any of the pics to get larger ones!


  Validation Code
Guest Comment 4 years ago
Site Visitor
Poor Comment Good Comment
Looks like you had an amazing time. Glad Emmett was able to get out and enjoy God's beautiful creation!!! Amazing pictures!
Guest Comment 4 years ago
Site Visitor
Poor Comment Good Comment
What a dude! Living life way more than this lazy adult is. :) - Richard W.