I feel like I have been a delinquent blogger lately. There has been so much going on and so much I want to share, but I never seem to find the time to sit and write it all out. I do think that posting little status updates on Facebook seems to have replaced some of my fuller blog entries. Unfortunately, those are so short, they don't always tell the whole story.
Christmas morning, Jordan received a Jump-O-Lene!! This is an inflatable trampoline measuring 8 feet across. We had to move some toys out of the basement and rearrange things to make it fit, but it's a great addition to our playroom!! It's a great way for Jordan and Conner to both get their exercise! Therapeutically, it's great for Jordan to work on her core strength and balance and well as her sensory stimulation.
Since Derrick and I spent last fall attending a class called It Takes Two to Talk to help us learn how to work with Jordan to encourage communication, she was not in a group class. However, in January she started in the toddler class. The first class was a complete disaster - she cried during every transition!!! They did some fun stuff with the kids - they brought in bins full of snow and let them dig in it with shovels!! I really need to do this with the kids here at home - what a great way for them to play in the snow without having to bundle up and go out into it! Since then, Jordan has done great in the class and we love it!! There is talk of them starting a speech/language class so we are currently waiting to hear when that will start.
Jordan had her calories increased in November after her appointment at the Gerber Center because they didn't think she was gaining weight fast enough (1 pound in 6 months). After 2 months at the increased calories, she was gaining a pound a month!!!! They agreed that this was much too fast as it put her over the 50th percentile for her body mass!! They decreased her calories (although they were slightly above what they had been before) and after a month she is gaining slowly. She is now up to 23 lbs. 15 oz - almost 24 lbs!!!!
Jordan still has a tendency to put all sorts of things in her mouth - particularly small things she finds laying around (crumbs on the table, stickers Conner has put on things, etc...) In the end of January, we had a big scare with Jordan! She was up in Conner's room playing while I made lunch when I heard her start gagging. I ran up and found her standing there with a mouthful of white paste. I realized that she had taken a bite of sidewalk chalk and had chewed it up and now had no idea what to do with it!! I grabbed her and ran down the stairs while sweeping her mouth and then rinsing it out with water. She was still gagging and so I dialed 911. While on the phone with them, she cleared most of what was obstructing her breathing and I gave her some sips of her thickened water. She seemed okay so they never dispatched anyone. However, we then had to face the possibility that she may have aspirated some of the chalk so I made a call to poison control to talk with them about the signs to watch for. She seemed fine at that point and never did show any complications but it was a HUGE wake-up call for me!!! I have been trying to be diligent about watching her and keeping things out of reach that are not safe for her. Unfortunately, with a 4 year old in the house, sometimes things get left out. We are all working hard on this.
This event was extremely emotional for me! Not only was the concern for Jordan's safety a major part, I had to once again face the fact that my baby girl just can't do things like most kids her age. At 2 1/2 I am still worrying about her putting things in her mouth the way a 6 month old does. We don't know how long she will continue to put things in her mouth and we don't know if at any point she will learn to swallow so that even if the things are in her mouth, at least she will not gag on them. It makes me sad to see her strong desire to be oral and yet have to constantly tell her "not in!" We know that she has some understanding of this and yet sometimes she is just curious and sometimes she is a defiant 2 year old!! My prayer is that she will come to an understanding and acceptance that she cannot put things in her mouth. However, I don't want this to create an oral aversion so that when she is capable of swallowing she won't put things in her mouth (at least the food we want her to!)
Last week Jordan went to Mary Free Bed to be evaluated for new thumb splints. She had received some neoprene ones through Ken-O-Sha last fall, but the Occupational Therapist at the Gerber Center thought she might benefit from some with hard plastic supports to stabilize the thumbs more effectively. The therapists evaluating her were amazed at how unstable her thumbs were! They are constantly hyper-extending backwards but she doesn't bend her thumb to compensate for it's position so they end up just looking weird!! The discussed several options and narrowed it down to 2 designs that they thought would work best for her. One was a very simple design and they made it and fit it right there. It is a white hard material that circles her thumb and part way across her palm and then has a strip that wraps around the back of her hand and connects with a neoprene velcro strap to the part on the palm. Due to the extreme malformation of her right thumb they almost splint the entire thumb in order to stabilize it. The left one is a bit more open for movement. Jordan has done pretty well with them, but she takes them off quite a bit more than the previous ones. I suspect that they aren't very comfortable and since she can't move them and many fine motor tasks are quite difficult, she would rather go without them. The second design is on order and should be in sometime next week. We will go in and have them form the hard part around her thumb, but the majority of the splint is neoprene and should be much more comfortable for her. We had fun picking out colors!!! At first, I avoided the bright pink because it was so bright, but then when I showed her the options, it was the one she picked out. However, after remembering how dirty her tan one got, I decided that it would look awful if her bright pink splint was covered with dirty spots so we settled for a dark purple :)
Well, that pretty much gets everything up to date!! I will post more later on her upcoming surgery.
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