For the past week we have been trying to get Caleigh's bloody stool under control. I think we've nipped it. Now we give the ulcer medicine for the next 3 months to aide healing her intestines and we wait and see.
Our pediatrician is trying to find an allergy medicine that is in tablet form and does not contain lactose as a filler. They are have a hard time finding such a thing. Apparently, lactose is a very common filler for medicines. Caleigh doesn't handle the sugary children's liquids. She's been off of liquid medicines for a long time now. We may be headed back to the allergist to ask about other options.
The sulfazalazine is in a compounded liquid form. Since starting it on Friday, Caleigh has been retching quite violently and more than usual. Our pharmacist will be ordering the powder form and making capsules that we will be able to open and mix with pedialtye. We do the same with her multi-vitamin already. Even in compounded suspension form there are fillers that the pharmacist must use. So we are hoping that the straight powder will be less irritating to Caleigh's tummy.
Ever since we woke up last week to blood, I've been in a total funk. It's nothing new really. Throughout Caleigh's entire life I've had ups and downs and I think that is normal. Every time there is a hiccup in our path the adrenaline flows and then things calm down. Reality hits, thoughts race and I'm right back to square one.
I've written some on paper this past week. Thoughts, phrases and fragments of speech. I feel like I'm in a weird place. I answer phone calls, go out with friends, achieve daily tasks with no problems all the while my mind is racing with thoughts and feelings. While these things are running through my mind I want to do nothing but write them down, tell someone. With life to live and Caleigh to tend to, I don't get them out and so the thought cycle continues.
I'm not sure what it is that has hit me so hard this time around. The cycle towards acceptance I suppose. Everyday has something a little off. Today was Caleigh's head control. No matter how we talk about it she has a hard time keeping her head up. She tells me that it is hard for her but that she tries her best. When it's upright, it is tilted to the left. She has momentary mid-line success, but with the constant movement of the dystonia it's very difficult for her to maintain the position.
Today it just got to me. I felt angry about it. I feel terrible because she tries so hard. She can't help it. Caleigh can do SO many things that she never should have been able to do. I don't know why I dwell on specifics. I'm guessing here, but I probably say "hold your head up straight" 50+ times a day. More on days with a lot of therapy. Sitting, standing, in both wheelchairs. We try using the cervical collar, but Caleigh just hangs her head on it choking herself. At least she is free to move around without it. I need to let it go, but there is something in me that wants to fix this one thing for her. If she could hold her head up straight she wouldn't be mistaken for sleeping all the time. If she could hold her head up straight her muscles wouldn't be strained in her neck. If she could hold her head up straight equipment and chairs would be easier. The "if's" are numerous. Why do I want to fix it so badly? Why can't I just accept it?
So I guess I will write my way through this. Who knows how long it will take. I will try to step back for the day to day and be grateful for what we have. We have a brilliant, beautiful little girl who amazes the masses. I need to follow suit.
15 comments:
She is pretty amazing. And so smart. I kind of think that whenever you accomplish a goal, you immediately move your mind towards the next one--often without acknowledging the victory. Like Charlie, I want him desperately to use his iPad for communication and he did it for the first time this week. And now, nothing. The child can select apps, scroll through albums and choose songs, but all I care about is that he doesn't want to "talk" to me on the Pad.
I will be praying for you concerning this. But I "get it!" as I do the same things with Annabel. You do have a precious daughter but the day to day is what it is.
Is it possible to tilt Caleigh's sitting position back a bit? (I mean tilting her actual seating.) Gravity might help to keep her head up if she's tilted back just a few degrees. When she is up straight in her chair, she is fighting gravity to keep her head up. Do you know what I mean?
Katy~ I think that is exactly what I've been doing. Check one thing off the list and move on too quickly without savoring the moment.
Cathy~ Thank you for your prayers and for getting it :-)
Anon~ We do change the tilt of Caleigh's chairs. She pulls her elbows back and brings her head forward. Head still down. I feel like we've tried everything. Who knows?
You can't tilt it waaay backward & then have a head rest so that gravity isn't working against her? I know another commenter asked that, but I'm curious. I mean, our heads are really heavy! I agree with you, caleigh would be better off if she was looking at the world face on & not being mistaken for sleeping. I'm sorry you feel so bummed out. It's totally understandable though.
This post hit home - every word. Thank you and (hugs)
Smiley's nickname was Noddy as a baby ( ironically and affectionately obviously ) . She now has pretty good head control though it is a bit over to one side. Most of that has been achieved by regular stomach work, lying on a wedge with (in her case) a favourite DVD on, that she wants to lift her head to watch. Hope this helps x
hugs.
when we tilt kendall back she crunches forward even more and works even harder to tuck in her chin.
writing is good, but you need a WEEKEND (or two good days that work with eric's schedule)away. like stat.
I don't have any words of wisdom but I just wanted to say that I think you are wonderful, and doing the best you can for Caleigh! You are amazing and I know it is difficult sometimes...If you want to get away for a week-end I'm available :) SERIOUS!!! Cocktails and warm water...ahhhh. Love you! Jen
I always look forward to your posts, because Caleigh is always doing something new, different. I find it incredible that you are able to have conversations with Caleigh (I would love for Emma to use her iPad half as good as Caleigh!).
It must be hard on her to know how much everyone wants her to hold her head up and she tried her best but still can't always get it up. I find that Emma has the hardest time holding her head up, etc. when she is in the midst of a growth spurt. Perhaps Caleigh is in one now?
Hugs to both of you!
Thank you for this post. The "if onlys" are too many for us & as soon as one is gone, another seems to take its place. writing is good, telling someone is better. I need to do the same. Thinking of you:)
I'm a sped teacher with 15 years experience, tilting back only increases dropping the head in 90% or more of kids. Some ideas would be - maybe have her vision checked again, not by an eye doctor but a vision specialist who can rule out that she is dropping her head to see better in the upper visual field - consider a different head rest, like an i2i, a savant, a stealth with swing away anterior facial pads, or you can try using a tilt switch or RJ Cooper's flopper stopper switch to remind her to hold her head up. Good luck.
Oh I am right there with you! Emily had some seizures last week and that put me into such a funk! And I feel like I say "head up" about 325 times a day. I start to feel like I am talking to myself! I know Emily tries hard, so then I feel guilty for getting frustrated with her. And round and round the feelings go. *sigh*
Huge & ginormous *HUGS* headed your way. I think the hardest thing about being a mommy to a kiddo with "special needs" is all the ups and downs. It is emotionally draining like nothing else, and, when you hit the proverbial wall, you feel weary like you've never felt before. Soul weary. It's hard, and I know the feeling all too well. I wish I could make the feeling go away for you, but the best I can offer is what you already know. You push through, you keep going, and it gets better. You find acceptance and peace on the way.
So glad the bloody stools resolved! Fingers crossed that all is well again with that.
Sending love, prayers & hugs!
xox
There is a great deal of information for head supports at Whitmeyer Biomechanix that I think would be helpful.
Here is their website: http://aesys.sunrisemedical.com/whitmyer/WBI/index.html
- Sarah in Michigan
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