It's always good to start off on a positive note, so I wanted to tell everyone how well Mira has been doing at sitting up. Sarah and I have seen her up for 10-15 seconds at a stretch sometimes! She has learned to get into a sitting position in a couple of different ways. The first is the 'super abdominal crunch', where she will thrust herself upward leaning forward (as if doing a sit up) which is a very effective method for her - Mira now boasts some serious ab muscles from doing this. Her second way is to push up off of her side with her arms, although doesn't seem to work as well for her. She ends up spinning around and gets her arms trapped underneath her. She seems to be working on a third method, which I caught her doing in her crib last week. While laying on her stomach, she will tuck her knees inward toward her chest, then cross her legs and lean backward. I was astonished when I saw her do it, partly because it looked so painful, but mainly because I have never seen her bring her legs together (in unison so to speak) in a purposeful manner. I did manage to capture some of her sitting gymnastics on video:
And now for the bad. Mira pretty much stopped eating 4 days ago. Her hunger strikes have increased in frequency and intensity over the past few months, but this latest one is a whopper. Sarah and I cannot get her to eat anything these days. She will only drink from a bottle. I don't know whether it's regression, stubbornness or my poor cooking, but she flat out will not eat anything. It is incredibly frustrating. We have tried every tactic outside of force-feeding, but have been unsuccessful for 4 days now. We usually manage to get a few bites (at best) and then the snubbing begins. We just wait another meal or another day until she decides she wants a solid meal.
The third and final issues these days is the screaming. I have no doubt that Mira's eating woes go hand in hand with her sleeping problems. Over the past few nights, she has woken up screaming and inconsolable at various times throughout the night. The first 2 nights were at 2am, then 3-4am the following night, then for several hours last night just before midnight. She has had a really difficult time decompressing before she goes to bed which is not uncommon, but lately has been waking up screaming her lungs for out until she is exhausted. We haven't seen her do this consistently (as in multiple nights in a row) in quite some time. We didn't hear a peep out of her after midnight last night, so a 6 hour stretch scream-free is a good sign of things to come we hope.
On a side note - Eli is really excited about starting kindergarten tomorrow. I can't believe he is already starting school! Jonah is also doing very well - Sarah and I got some great 'cooing' and smiles out of him last night - too bad it was at 1:30am!
2 comments:
Love the video! She looks great! I am so sorry about the screaming ... if it's not one, it's the other!!
Just coming in own her story here! So sorry if I may be repeating what any others might request or things you have already tried. Cameran has delt with many of these same issues as Mira. 1st the eating this is a daily battle with her one day she is eating a hotdog her favorite then the next day she will not touch it nor anything else for that matter. Last week she did this she went just about all week with nothing but a few chips but she was drinking good. Her Dr. told us he didnt worry about the eating as much as he did with her not drinking. He says as long as she will take drinks and has a wet diaper then he is ok with her not eating and that she will eat when she gets hungry! Still doesnt make me feel any better but I just know its beacuse she is so stubborn. Now for the sleeping issues. Have you all talked with your neuro about having a sleep study done? Cameran had one done back in April and we got some shocking results. We had been telling them of how often she woke during the night fussing and tossing and turning and screaming out. Well turns out she was waking on average of 21-22 times PER HOUR!!! They put her on Neurontin and she has been sleeping much better. They dont know why she was waking so often but just said alot of kids with seizures have this problem. We worried that it was seizures since she always had more in her sleep then when awake but it wasnt shes been sf for over a year now. So that leads me into my next question....Do you think these could be seizures? We have been told that seizures come in many forms, starring spells, odd laughing spells and even crying seizures(called a Neuro cry). One time Cami was in the hospital for ACTH and we kept hearing this baby cry and cry and cry it seemed like it never stopped. So we asked the nurse why doesnt someone hold that baby and she said he had a Neuro cry that it was like a seizure but caused him to cry instead. I had never heard of such a thing but of course Infantile Spasms was a new one on us as well! SO I just wanted to share a few of those things with you but like I said you might have already known these things. Cameran and Mira look to be about the same age and diagnosed around the same time as well. I hope she soon finds relief!
Best Wishes,
Karen
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