Sometimes…
August 10, 2008 | Updates
I have a lot to write and lots of new pictures. But I can’t really bring myself to do it tonight. We’ve had a very busy few weeks. And we have a few more busy weeks ahead until school starts and things settle down again. But right now, I’m just tired - so very tired.
I don’t know what is going on with Samuel. He’s been so “off” for over a week now. And I don’t know why. I spent all day Thursday running him to the pediatrician (found nothing) and having his ankle x-rayed because it was swollen (found nothing). It was a sad attempt to try and figure out what is bothering him. It’s been 8 days of severe agitation. Eight days of me wanting to pull my hair out because he is so unhappy and there is literally nothing I can do about it. I’ve checked his bladder. I’ve made sure he isn’t constipated. I’ve tried tranxene. I’ve tried baclofen. I’ve even changed his seizure meds around to try and help. Nothing. I’ve ruled out ABR being the problem. I don’t think it’s any of his oral meds. It could be his baclofen pump, so we have an appointment for that tomorrow. But what if it’s not. I don’t think his stomach is upset. I don’t think it’s gas. No fever. Maybe it’s a splitting headache - but for 8 days? I doubt it. Aaaaauuuuurrrrggggghhhhh! You know what? I can do all this when he is happy and smiling. But when he’s not, I’m a basket case. Sometimes…I want to hide away in my bed with the covers over my head and hope that somehow it will all go away. We’ve been through a lot and come to terms with a lot. But I don’t know if I will ever be able to come to terms with watching my child suffer while not being able to do anything about it. I’m not sure anyone could come to terms with that.
Hopefully, tomorrow will be better. I not asking for much. I just want him to be comfortable and happy. I just want to know what is bothering him… Not quite sure how I’m supposed to go about figuring that out, though. Maybe I can learn to read minds? Probably not. We could use your prayers.
Love,
Teresa
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August 10th, 2008 at 10:03 pm, Natalie Says:
I hear ya sista. Nothing is worse than knowing something is ‘off’ but not knowing what or how to fix it. I will be praying that he perks back up and is back to Super Samuel! Thanks for taking the time to update. I love reading about him and you and your fam. You are all such inspirations and just super awesome!
Love ya.
Nat
August 11th, 2008 at 12:05 pm, Shari K. Says:
I’m so sorry that Samuel’s been feeling bad for so many days in a row.
You certainly were vigilant and persevering to look into every last cause that might be behind his upset.
Hopefully you’re right and it’s his pump. If not, maybe he’s developed a new allergy or sensitivity to something in his environment? It could be anything from something he eats to something in the air. Supposedly people can develop new allergies and/or lose old allergies throughout their entire lives. I know it’s been true for me!
Anyhoo, I’m thinking good thoughts for you and Samuel, and I’m hoping that things return to the upbeat and encouraging feelings of your previous post about the synchronicity of the total stranger telling you that Samuel loves you.
That was so beautiful!!
Your faithful blog lurker and occasional poster,
Shari in California
P.S. Maybe Samuel’s brain is suddenly more active, or has made some new connections, and he’s feeling frustrated because he wants to talk now more than ever, but can’t figure out how to do it!! He certainly appears to be engaged in the world around him, looking at his facial expressions and eye contact in the majority of your photos!
August 24th, 2008 at 1:07 pm, Darlene Says:
Hello Teresa,
It sounds like you had a pretty busy and fun filled summer. I can’t believe how fast the summer flew by. I noticed that you stated you pulled a tick out of the bottom of your foot correct? The best soultion for a tick removal is put some vasaline on a q-tip and place it on the top of the tick, it will make the tick back out. The tick will then fall off and die. It’s really easy to get Lyme disease if you try to pull the tick off with just a tweaser as the legs or the head can break off this way and can remain intact to the skin.
Samuel you are just so incrediably adorable. We all knew how much you loved your mommy. A child’s eyes can tell you allot about what they are thinking. Have a great school year as I am sure with 5 boys it keeps you busy…….. much love to Mr. Samuel.