-She has not pooped since Thursday and only pooped twice last week. We had found a good balance of meds where she was going every day to every other day, so this is a change. She had a skid mark in her diaper on Sunday but thats it. We have upped her laxative and still no poop. Soon we are going to have to go to the next steps in the poop plan which is no fun for anyone. (update... we did have some poop come out with lots of extra laxatives and it took a lot of work on her part and she was not happy, but we will see if it keeps going cause this is not a weeks worth of poop... also be glad you were not here for the smell!)
- She is a lot more lethargic. Jillian has never had the same energy level of her peers, but right now her energy level has gone down in comparison to herself. This started a little over 3 weeks ago and has continued. She has never been a bounce off the walls person but now she is spending significant portions of her day just sitting... not doing anything (not watching TV, playing iPad ect, just sitting looking at the wall)
- Her muscles are bothering her. She has laid on the floor multiple times lately crying that her muscles hurt. I am not sure if it is more of a pain or that her muscles are tired but a three year old should not be complaining about her muscles.
- Her muscle weakness has increased. Jillian has always fallen a lot, however she has been taking massive falls the past few weeks, to the point I am amazed we have yet to end up in the ER with a big injury. We took her sandal shopping this weekend and she asked us to strap her in her stroller because she kept falling out. This is a kiddo who we have rarely strapped into things (obviously we ALWAYS strap her into her car seat, I am a car seat safety nut) because she never tries to get out of things. Her muscles are not doing what she wants and it is frustrating her. She is needing more support from things around her and when you hold her it is like holding a wet noodle.
- She really struggled with body temp regulation this weekend. We tried to hang out outside since it was beautiful out (low 70s, high 60s) but even in shorts and a t-shirt she got overheated (note she was not running around, she was sitting in a chair and she and Brent played with a ball for less then 5 minutes). She got overheated in church on Sunday to the point we had to put ice packs on her. I am looking at different cooling options. She has always had issues with getting hot fast and sweating a lot but this was much more extreme then we have ever seen it.
-We have seen more of the overtired goofiness. Its different then her just being silly, its that tired slap happy. When she is like this her muscles struggle even more to the point it gets hard for her to walk at all.
-She is toe walking more. She never toe walked when she was younger but it has been increasing more and more along with her rolling her ankles.
It is to the point other people that know Jillian are commenting about how something is off. I was talking on the phone with my mom last night and asking if I was just crazy and making a big deal out of nothing and she said no that there were multiple other people around us that know Jillian well and know that something is off.
I try really hard not to over react with things with Jilli. We try really hard not to compare her to other kids but to only compare her to her and her skill level. This has been going on for about 3 weeks now and I just sent the doctor an email on Sunday night because I wanted to see if it would resolve itself. She has no signs of an acute illness (no runny nose, temp, cough, ect) but I wanted to make sure she was not coming down with something. If she is sitting and not having to move much she seams to be ok so if people are just casually seeing her they might not notice it as much, but at home or if you spend more then a few minutes with her it is noticeable.
Her PT brought up that this might be more warn out because some of her skills have grown, however the skill growth that we have seen has mostly been in PT and has not transferred to home. She has needed more breaks in PT then she was needing. Her PT said that she thinks whatever we are seeing now is related to whatever her overarching diagnosis is however we still don't have an official overarching diagnosis.
I sent a message to Jillian's ped on Sunday night explaining everything that we are seeing. Her response was to contact pulmonology if we think her O2 needs to be increased (I am not sure if that would help or not) and to wait to see what other specialists have to say once we get into them (we see neuromuscular in July and are still waiting to hear from genetics on when we can get into the clinic for "this"). When she has multiple system issues like this it is hard to figure out who to contact. This does not fall under one specialty and some of this falls under specialties that we don't have on our team. Whatever is going on is not just a random bunch of things going on, its is connected, but what is causing it and how do we help her? Brent and I have gone to the point of making sure that none of her meds changed manufactures to make sure that was not effecting her. Its one of those times were there is not a clear cut answer and to be honest its hard... its hard not having a clear cut answer. I know I should be use to not having clear cut answers by now, but when you see things change in your kid you want to help them. Its hard too because it is not like it is an urgent medical need... bringing her to the ER is not going to get me anywhere, that would be an over reaction, but something is off.
So for now I just support her and help her the best I can. I enjoy the extra cuddles since she is spending more time on the couch. I try to look for the lessons that God is teaching me in all of this. And I just pick myself up and keep going and trying to do the best things for her.
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| She has been making a lot of "beds" for herself |
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| She was sitting and reading books and then I looked over and she was laying on the ground... she was not sleeping, just exhausted |
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| Starbucks with mom and dad. She is holding herself is weird positions in chairs right now and if the chair is not supportive she has asked us a few times to help support her |
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| Her beach chair. After watching the Daniel Tiger episode where they make a pretend beach she decided she needed a beach chair at Grandma and Bumpa's house |
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| Worn out! She fell asleep in less then 5min from laying down... that is not like her! She fell asleep last night around 9:30, woke up for a bit at 6 and then slept until 10 |
On a side cute note, this morning when Jillian woke up she was telling me all about how when Tinkerbell was in her mom's tummy her nickname was blanket but once she came out her name was Tinkerbell. Jillian currently calls her sister "Monkey Playdough" and we have been talking about how when the baby comes out mommy and daddy will give the baby a new name just like when she was in my tummy we called her "Princess Marshmallow" but when she came out we named her Jillian. It is cute listening to her try to make sense of this who getting a new sister thing
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