Wednesday, June 6, 2012

From Here to There

I'm heavy with thoughts today. It's been a week full of doctor appointments and check ups with Elijah. The first was a visit to the Orthopedist to see about getting Elijah some "braces" to keep him from relying on his hypermobility (extreme flexibility) in standing. (Basically, in a kneeling position, instead of putting one foot underneath himself and then standing up, he just grabs onto something and rolls right over the top of his feet.) He'll eventually learn to do it right, but this is the goal of early intervention-approach the learning of skills from a variety of angles and hope for a benefit.  I definitely see that there is a benefit. It is not a direct relation, though. It's not as if 5 therapies a week gets one result while 15 therapies a week would get a much better result.  It doesn't seem to work quite like that, but I definitely see an improvement. The Orthopedist was nice enough, and he's even just finished treating my nephew for a broken toe, but he flat out said that he doesn't believe that physical therapy does any good and that braces for Elijah won't make any difference. Our physical therapist was with us on this appointment and she was pissed. Ultimately, he gave us what we wanted, which was the referral for the braces, but he was clear in his stance. It was pretty maddening. Last I checked, medical school is training them to practice medicine, not study a control group of people who have had early intervention vs those who have not.  As a Mother, I have one goal: advocate and help my kids. I would SO much rather err on the side of trying something that didn't help, than to err on the side of not trying when something really could have helped. The Orthopedist also x-rayed Elijah's neck for an uncommon condition that causes instability in the neck and spine and would require surgery to fix.  He was very sure Elijah wasn't going to have that, but did an x-ray just to be sure. 10 minutes later, after he read the x-ray, he popped back into the room to tell us the x-rays were clear for that condition.  He repeated that it was a really uncommon condition and it was unlikely that he would have had that. I looked straight at him and said, "Yeah, well it was 1 in 770 that I was going to have a baby with Down syndrome and it happened. I really don't rely on "uncommon" anymore." Smiley face.

IMG_7105 Our next appointment this week was with the Ear, Nose and Throat doctor. I wanted to have Elijah's ears checked again, as he didn't pass his last hearing test and had fluid in his inner ear. I wanted to see if we should be exploring having tubes put in his ears or if it had resolved itself. We waited an hour to see this doctor.  While waiting, 3 patients walked in the door: an adult woman with Down syndrome, another adult woman who had a typical appearance but seemed intellectually disabled in some way, and a man who also seemed intellectually disabled and who had clearly had some sort of ear operation (he had large doughnut shaped protectors over his ears.) I'll be honest in saying that it was a little scary.  Granted, of the 3, the woman with Down syndrome seemed the most engaged with her surroundings. However, she was the mental image I had always had of people with Down syndrome- tongue hanging out and clearly...different. It may have just been my imagination, but Elijah was looking right at her and only her. She kept commenting, "Look at that baby. That's a cute baby. Look at that baby." Elijah does look more like a baby than most 2 year olds, but there were 3 little kids sitting right next to this woman and she never commented on them at all. I kinda wanted to cry. I don't know this woman, and maybe she has had a really good life, but it didn't "look" like how I ever imagined a child of mine living a life.

 IMG_7057 Last up in the doctor line-up this week, was the Opthamologist. I like this doctor. We have been to him before and he was the one who prescribed glasses for Elijah to help with his near sightedness. Insert the giant sigh. Elijah will. not. wear. his. glasses. He will not wear them Sam I am. He will not wear them with a hat. He will not wear them on a cat. He will not wear them up or down. He will not wear them if I frown. But, we went in for a check up anyway today. It was my secret hope that maybe he had outgrown the prescription and that he hadn't been keeping the glasses on because he wasn't seeing well...yeah...NO. He's still just as near sighted as before. The doctor gave us a new prescription and I said, "He will not keep the glasses on- not even for one minute. I don't know what to do." The doctor said, "It's tough, but in Elijah's case, the glasses would really make a huge difference in how he could relate to his world." What I heard was: "If you were a better Mother, then you could get him to wear his glasses." But, I know that no amount of Mother of the Year awards would change this right now. The best I can do is keep trying with the glasses and hope that eventually, developmentally, he'll be ready to wear them. Pretty much wanted to cry anyway.

Charles and I took the boys to a concert in the park this weekend. It was a wonderful night- the weather was amazing, the music fantastic and Christian and Elijah were soaking up every moment. At one point, I stood up and started dancing with Elijah. He has this full-out belly laugh anytime we dance.  It is the full and complete definition of JOY. I've never had an opportunity to witness something quite so contagious and pure. The park concert was no exception. Elijah had a ball! A little while later, a woman came up to me and said, "I wanted to tell you what a gift it was to see you dancing with your son.  We were enjoying the park before that, but that just made our night. That was pure joy!" I agree with her. I am just lucky to be the one that gets to dance with him and benefit from the joy of watching him belly laugh...


50mm Play1B
I had to throw in a photo of my sweetie, Charles, too. I was having a blast with a new 50mm lens I got and couldn't resist getting some love shots of my boys...

Christian "graduates" from preschool tomorrow. I don't know how I'm going to do with that. He is growing up so fast, couldn't possibly be more excited about the idea of Kindergarten, and is becoming more and more independent with each passing day.

"From there to here, from here to there, funny things are everywhere. Oh me! Oh my! Oh me! Oh my! What a lot of funny things go by. Today is gone. Today was fun. Tomorrow is another one." -Dr. Seuss


Hailey said...

Jen baby. Sounds like an uber challenging week. You are one of the strongest people I know, and I am so proud of you and everything you do for your family.

Anonymous said...

loved seeing you this morning and getting a chance to chat. love you. i'm glad i got to read your blog and read the details about each visit. so hard to get in a complete thought with two boys throwing pancakes. :) stay strong, stay positive, stay you.
love, lori

P said...

My Ophthamologist said as a complete last resort there are drops that will district his vision more without the glasses and exaggerate your hope that the improvement=willingness.

My son was the same for a week, no way I'm wearing that. He was at a drop off (bit I hovered a lot!!!) therapy preschool and they put the glasses on and in that setting he complied and wears them fine mostly now. He had lots of breaks wearing them the first 6 months too until I was intimidated by doctor to shoot for 90% usage not 70%.

Also get a second Ophthamologist opinion - I dont think getting

P said...

I don't think getting the prescription right is an exact science - it might be the clarity AND I think their are vision exercises for Many of the problems common with DS (not sure if only nearsightedness is one, but) and it's debated like orthopedics whether their is a benefit or not. See if other docs have other ideas

You are mom of love and comfort, you are not best souce to overcome glasses hurdle/aversione. Get a grandma or therapist to work on it maybe?

P said...

The dire results of the instability you had measured is soooooo crucial to your knowledgebase. A local boy was in a wheelchair and at children's for months recovering just this year---another local boy has died of other complications and a third family has been overcoming leukemia. You know, you never know.

Get a sleep study! :) hugs and exciting things to see happening, I'm thrilled you have a summer with some time to relax, us too PHEW! We made it