Tuesday, October 27, 2009

Not quite right

Reagan slept well again last night. She was only in bed for a few minutes last night when she woke crying with a huge dirty diaper. I'm sure that helped her to sleep better. It had been 5+ days since she had gone, so I was beginning to worry. This morning she had aquatic therapy. It's a little cool here (for Houston anyway) but the pool is indoors and they keep it nice and steamy and the water is warm. She was actually very smiley and she seemed to enjoy it. Then we changed her, bundled her up, and headed to Feldenkrais therapy. She was relaxed after her swim in the pool and was very cooperative with all the stretches and movements her practitioner was doing. But something is not quite right. It's like she's a different child...you would never peg her for the super chatty and animated girl from only a week ago. I'm not sure what it is. Maybe it's the Botox (but I wouldn't think that would affect her moods or personality). Maybe it's the Banzel. We've got an appt tomorrow at Texas Children's for PT, maybe I'll talk to neurology to see if they could order some blood work just to check her out. You know I'm getting worried if I'm asking for a blood draw. It's just strange. She's SO different. Staring off into space a lot with a blank stare. It's like she feels sick but she's not displaying any symptoms (no fever, no runny nose, no coughing)...but she's still not wanting to eat. She's giving me such a hard time with her bottles. Today (all day) I only got a measily 12oz of formula in her...but Mike got another 2.5oz of pedialyte/water in her tonight and she had another 1.5oz of water mixed in with some oatmeal, so I guess she'll be OK. I really worry about her low fluid intake and how that's going to affect her bodily functions overall. She usually only takes in 16-18oz a day (which is already way below the recommended 32oz for her age/wt) but when she gets really low like this...it concerns me. Please keep her in your prayers.

5 comments:

Heather said...

Push for the blood work Tera.Although I am sure she is fine.She probably is just fighting something off or maybe she just misses Grandma!Always praying for her my friend.And you and Mike too.

Jamie said...

Im with Heather on the blood work. Oh Miss Reagan...wish I had the solution to her consipation...since madie has been eating more food she poops 3x daily! Sometimes we would use prune juice or karo syrup or peaches or pears helped her..:( Dunno mama.
(((hugs)))

Debbie said...

The guessing game....I know that one, play it ALL the time! I agree with the blood work.
With Hudson at his max on the Banzel he was a zombie, but I am not sure if it was the constant seizures, med or both!
Hudson used to have huge constipation issues and (knock on wood) we have had huge GI improvements over the last few months. I know every kid is different but this is what is working for us...
He gets 1/2 tsp Miralax 3x day w/his first three feeds. He started with Senna as well but we have been able to drop that over a month ago as he poops daily.(with mito disease, because of muscle weakness, the Senna helps the muscles contract to help push everything through) I have also noticed when he does not poop it is on the days he did not eat fruits and veggies...that helps him a ton! ALso, for some reason splitting the Miralax up has helped a ton too...he used to get one large dosing 1x a day. All this to say the frequent vomting has stopped since this has all been regulated... at least all the constipation doesn't cause Reagan to vomit..that was the theory for Hudson's vomiting issues!
Always keeping you guys in my prayers...hope the two of you have a great day!

Shonda said...

Tera, I agree Mommy knows best. I would get the blood woork done. I can tell by your post you feel like something is a little different with Reagan. I will be praying for her as always.

Bente said...

Try asking for a Gtube, then you can give her fluids all you want, especially on a pump during the night...saved us from constant dehydration problems with our little one. Also a plus for giving meds..straight to the tummy! Try it! I love ours!