Tuesday, June 29, 2010
Monday, June 21, 2010
It was one of the reasons I prodded hubby to start looking at campers several years ago. After looking around a couple of summers as our wish list kept climbing, the pop up camper we initially intended to get turned into something more. We made a huge indulgence and bought a REALLY nice camper. Its awesome. No really, its a hotel on wheels. It has heat, air conditioning and even a shower! Its kitchen is even equipped with a microwave (really) and the kitchen itself is even prettier than the one in my own home! When we bought it, we were still in fantasy mode of having a family and being able to take it away on summer vacations any weekend we wanted.
Here's a few pics of the boys getting acquainted with the camper...
Thursday, June 17, 2010
Well the overnight oxygen study did not go as well as we hoped. To be honest, we had a feeling right from the start. The machine was beeping way more than usual. Figures on testing night of all nights. Pulmonary said he had too many episodes of lower oxygen (80's). He recovers very well and shoots right back to the 90's but they still don't like the number of them. I am hoping it was just an "off" night and not some sort of new trend. I really had psyched myself up that he was ready. I guess I'm the one who is ready.
I'm sure you can read my disappointment. Don't get me wrong, I know its not the end of the world certainly. I just hate the battle every night of putting the dumb things in his nose as he tries his hardest to fight us and then taping it to his face so hopefully he doesn't pull it off in the middle of the night. and then his sweet sensitive skin is all irritated from the tape. argh. there could and are much worse things I know so I guess I'm just having one of those woe is me nights.
What bothered me the most was pulmonary saying they'd like to refer him to a sleep clinic to see what might be underlying this (its been over three months since his pneumonia so a long time to still be needing oxygen). Ofcourse with his spina bifida they threw out wanting to rule out chiari issues. Arnold Chiari malformation is something that all people with spina bifida have, it is the pulling down of the brain stem. Many individuals never have any symptoms due to this. Although it is something that many of us learn about right during pregnancy and fret about. There are many symptoms or complications that a small percentage of people can have. In infants, breathing and swallowing issues top the list. Honestly whenever Alex is having a health issue, its always in the back of my mind (okay sometimes not so far back) is this shunt related? Is it working properly, should we get it checked? Its been a long time since I worried about Chiari.
I really think if his breathing issues were due to Chiari, it would be more severe, not this subtle. I really think more than likely they are being overly cautious and I"m fine if he still needs to have the oxygen but why did they have to stick the possibility of Chiari problems in my head? He was so premature and all the scarring of his lungs, I"m thinking even though his last chest xrays looked better, maybe he's still just healing them. Well they suggested that we consider going to a sleep clinic to assess what is going on (because you know we are getting pretty bored with the number of specialists and appointments we have now, ha). Mark and I questioned them on the need for the referral this soon. We also discussed that we think Alex is having a flare up in his reflux and having his meds increased and couldn't that be contributing to these issues and she agreed. So long story short (oh right, I don't do short so well, do I?) we are back on the oxygen and re-trying the overnight study in two weeks. If he's not improved, then we agreed we'd do the sleep clinic.
For any parents who might be reading this that have any experience in the sleep clinic, would love to hear more information. or any one with experience with SB and difficulty weaning from oxygen, would love to hear your experience especially. THANKS so much!!!
Tuesday, June 15, 2010
We are quite worried about this knowing that if it continues to get worse the only treatment is very delicate surgery to fuse these vertebrae together in hopes to prevent it from curving any further. The doctor has explained that we want to put this surgery off as long as possible, in a "perfect" world all the way until Alex is at least eight or nine years old so he has time to grow. Because the surgery would fuse these vertebrae together, this area would be prohibited from growing, stopping growth in any area is not something you want to have to do in a baby. And any other spinal surgery at all is not something we want to have him need again. Although the doctor wants to continue to follow this closely, he is careful to reassure us that as of right now, this curve is not significant enough at this point to have to make any decisions about. He will get more xrays in another 3-4 months. The thought of this getting worse frightens me. I can't even try to put into words how much but I will do my best not to let the worry get me. It would be fruitless. God has brought Alex (and both of our sons) through soooo much, and I have to have faith that He will walk us through this as well as He's done all of the rest.
On a lighter note, the Ortho also agreed it was time for Alex to get a stander. This is simply a piece of equipment that will assist Alex in being upright and bearing weight. The ability to stand or walk is more than just a milestone, it has huge medical benefits. The act of being upright and bearing weight alone helps to build and strengthen bones that otherwise might not get a chance to be used and as a result atrophy, makes the circulatory system work more efficiently pumping the blood from the heart to limbs, as well as improving respiratory function to the lungs. The act of being upright also enhances bowel and bladder function, as well as decreasing potential for pressure sores and skin breakdown.