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| Beach Diva! |
I feel less anxious about her general health than I have in a year! It's a great feeling for all of us. She worries less too. I think she knows now that medicine will help her (we are super lucky in this respect), and that we will always make sure to have her medicine nearby and that there are lots of other kids in the world who have this same strange issue so it's nothing to be ashamed of; all things that help a 6-year-old feel secure.
There are not many blogs where it seems appropriate to talk about poop, but alas...
POOP
We now have a "Poop Chart" hanging in our bathroom. Nothing but class at our house! I am beginning to think that Ellie's constipation issues are a major trigger for stomach aches and CVS episodes. Battling constipation has been consistent since she started solid foods as a toddler. Right now we give her a cap-full of Miralax at least once a day, sometimes twice a day. When we slow down on the Miralax her pooping slows way down too. In fact, last night we were up a majority of the beginning of the night with stomach aches, I was naturally worried about an episode but I think it was constipation. Now that we have the poop chart it has been easier for me to keep track. If we suddenly go 3-4 days without a star on the chart, I know we need to step it up a bit (water, fruit, veggies, sleep, rest, and Miralax). Anyway....Her GI doc says it could easily take a year or two of regulating her pooping with Miralax before her stretched out colon is back down to a healthy size.
Side Track
Have I mentioned how important it is for her to rest? There is a big difference between rest and sleep and I think this is where we get some poor judgement from other friends and family. It's hard to explain, but if she does too much in a day or over a few days, her little system just shuts down--tummy aches, pale, lethargic, headaches. I have literally watched people roll their eyes at my concern or when I say we have to leave at 6pm to start getting ready for bed...thankfully this whole journey has toughened me up and it is pretty darn easy to put the judgement aside and do what needs to be done to keep her at her best. Anyway...
SLEEP
I suppose summer sleep has been good for all of us too. We are not constantly trying to get our day completed by 7:30pm, feeling nervous that anything later could bring on an episode. During the school year it is a game of balance and timing. I always felt like we were racing to get everything squeezed in before 7 or 7:30 (Daddy doesn't even get home till 7) in hopes that E would be actually sleeping by 8 or 8:30 and then we spent a good portion of our own evening hoping it was "good" night for her (waking only once or twice constitutes a good night for her). Up until last week we have had Ellie in our bed at night and her sleep has been great. She is in bed for about 12 hours and while she still wakes up throughout the night all she has to do is turn over and look at us and she falls right back asleep. When she is in her own bed the nighttime waking makes her nervous and causes her to be VERY awake and have even worse sleep including often being awake for over an hour at a time, hence us letting her sleep with us for a while there. This past week we started making her start in her own bed at bedtime. If she stays in her bed until 1am she gets a prize the next morning. Next week she will have to stay in her own bed till 3am to get a prize. That hasn't happened yet so...
She has also started sleep walking. Brian and I don't know if this is a reaction to the medicine she takes at night (amitriptyline) or if it is just a part of Ellie's sleep journey. So far the sleep walking is no big deal. It is sort of creepy to witness but we just walk her right back to her bed and she doesn't remember it the next day. She also mumbles incoherently during it--so strange.
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| Ellie taking over our bed. |
Lastly, I made another new CVS-mommy friend on facebook. Her poor little guy has had a really, really rough go of it. He is not quite 3-years-old and has terrible migraines and then the CVS symptoms kick in. He doesn't always have luck with the anti-nausea medicines. So even after they give him zofran his little body just keeps vomiting/dry-heaving bile over and over. While I write this generally happy blog update I am reminded of what an UGLY syndrome CVS is. I mean, he is not even 3-years-old and he has migraines a few times a week and the CVS episodes about once a week. AND, he is the youngest of 3 little ones in their family. My whole heart goes out to that warrior mommy. He started getting sick about a year ago, and (ah-hem, if I do say so myself) his mommy is a lot like me--not willing to "wait and see." They are working hard, also with a myriad of doctors, to get him the best treatment possible. But for now she is a full-time nurse, advocate and mommy. I'm sending her and her hubby all my good thoughts. She and I both agree, there is so much power behind just having another parent to talk with. Two years ago I had never even heard of CVS, now I am friends with (or virtual friends with) a handful of CVS-mommys. And thank god we found each other!
These last two pictures are a great example of what happens whenever we are at a doctor appointment for Ellie. This was at our last Patch Adams dentist appointment. Colin will immediately raise his arm to Ellie by way of introduction and tell the doctor, "This is my sister, Ellie Granstrom," and then b-line for the nearest chair and either sit under it or on it with his head down (usually begging for the ipad). He is such a funny little guy! Despite Ellie constantly trying to calm his nerves, he is deathly afraid of any sort of doctor and wants nothing to do with any of it.
Nope. It is not possible for me to do a quick update. Oh well.
