The Fanning Four

Help me brainstorm: Caleb has been very particular about the blankets on his bed for quite a while. He wants them on in a certain order- sheet, brown polka dot blanket, blue blanket, Bambi blanket. They all have to be tucked in and straight, going right up to the edges of his bed. Not too big of a deal in the scheme of life. Well, for the past three nights he has screamed out in the middle of the night, and I mean, screaming mad, until we come. What's the problem? He wants the blankets fixed. And then he's fine and goes back to sleep. And I spend the next hour trying to get back to sleep. Last night I tried to have him fix it himself with me standing there but that didn't work. So, do we just suck it up and get up each night and fix the blankets and hope it's a phase? Do we pile on the attention and affection even more than normal during the day and hope it's just that? Do we try and get him to fix it himself or deal with it? Help?

We're headed home from UAB Children's. Our appt was at 8am and we had stayed with friends in Montgomery so we had an early drive up which was nice because there wasn't much traffic and we were done with our appointments by 11. When you go to "cleft clinic" you see the whole cleft team, so here's the run down: 1. Audiology: Hearing is fine. One tube is in place and working. The other tube came out a long time ago (which we knew). No worries here! 2. Genetics- our biggest surprise. Caleb already had a basic genetics test to identify syndromes and they didn't find anything. This time the geneticist said that because of the combo of cleft, severe speech delay, and some slightly unique facial features (one example: flat section on the side of his ears) he thinks Caleb probably does have an associated syndrome. He just doesn't know what syndrome it is. So in a year they will do more extensive testing to see what they can find. It doesn't affect anyt...

If we sat down on the couch to chat, there's many things I could tell you about life right now and how Caleb's doing and how Bethany's doing. For now though, I'll have to let the pictures speak. Caleb is learning more and more sign language. In this picture he is signing "Dad" because he wants me to spell it so he can write it with sidewalk chalk.  Bethany was having some trouble hearing so she was going to get tubes but we cancelled it because her hearing is much better. She was disappointed (for various reasons) so we had a pretend surgery. This is her drinking the "happy juice" kids take before the procedure.  Caleb hasn't been much of a pretend play kind of guy in general, but he loves playing doctor. Makes a lot of sense for a kid who has spent way too much time on the other end of this scenario. Go Dr. Caleb!!! This picture just defines Caleb- he is a bundle of pure energy. He is a comedian and he is loud!

So, now that we're on a surgery hiatus for a few years (thank goodness!) we're turning our focus to how to best help Caleb learn to talk and to get a handle on his sensory issues.  According to the book I've been reading, The Out-of- Sync-Child , "sensory processing disorder is the inability to use information received through the senses in order to function smoothly in daily life." SPD is an umbrella term. Go down a level, and Caleb would be classified under "sensory modulation disorder" and then one more level to "sensory seeking". Basically it means that Caleb requires more input than the average child to understand his environment. He particularly craves touch, movement, and smell. I don't really understand it all and we may be seeking the help of a neurologist soon, so I would be able to explain more after that. But in every day life it looks like this: Constant movement- he loves to swing, horse play, be tickled, jump, run aroun...

So I've known this information for almost a week now. And I've held it close, only talking about it with a couple people. I guess I'm just embarrassed. I'm tired of needing help. I'm tired of talking about medical problems.  We've had a lot with my mono/Lyme disease last year and Caleb's 2 surgeries. I kind of just want to pretend it's not real. But it is, and so here it is. About 2 months ago, on a rainy day, I was getting the kids our of the car and slipped on the wet garage floor and totally wiped out. I had immediate intense pain and wasn't sure I was going to be able to stand up. Bethy was so sweet and came over and started picking up the things I dropped and asking how she could help. Fortunately I did get up and even managed to hobble around and make the kids' lunch. I limped around for the next few days, went to the dr. twice, got a brace, some pain meds, and anti inflammatory meds and assumed I'd heal with time. It did get better. ...

I haven't been a great blogger this past year. It's just been full. Life has been full. Caleb had his 3 year check up and his pediatrician said it looks pretty healthy. He's 30.8 pounds and 38 inches tall. She did hear a heart murmur and we have been concerned because he gets out of breath easily. So we will be making a trip to the pediatric cardiologist soon. We'll keep you posted. Caleb still doesn't say very many words and only one or two that are truly understandable. His speech therapist has said he has speech apraxia. That basically means that his brain has trouble telling his mouth what to do.  He still has a lot of muscle weakness (part of why we want to check his heart). The muscle weakness in his face and mouth make it difficult for him to make sounds. We have taught him quite a few sign language words and are working on getting a picture card communication system going. It has been very difficult to accept his lack of speech. We definitely thought h...

She's talkative (although we've been told she is much quiter at school), energetic, and intelligent. Commonly heard phrases ,"Hey, can I tell you somethin'?", "What means ______?" (asking definitition of a word), "Let's pack up" (she likes to pack suitcases and go on imaginary trips), "My pets......" (she has a world of imaginary "pets" including penguins, polor bears, etc.). She knows so many Bible stories, I think she's ready for seminary. She is shy around new adults but friendly with kids her age. She likes to pick out her own outfits and has a Punky Brewster type style. She loves to play with baby dolls, color, paint, and throw "parties". She is in gymnastics and just moved up a level to Hot Shots. She is learning how to swim this summer. She wants to marry her friend Nathan, be a Momma, and have 2 kids. She thinks Nathan will work on houses and go to the bank. She wants to adopt one ...