Botox, Gait Trainer and Oil - What do they have in common?

Our brains are overwhelmed with information from today. As always, just the pace of the day and Mason's tolerance were challenging at times, but overall, Mason was in a great mood and very accepting of the constant questions, prodding, and interruptions in his routine. I'm going to recap every detail as best I can.

We started the morning off with a hip x-ray. Results are good. Mason needs to continue with the weight bearing time to ensure the hips continue to form normally.

Then off to PT. Mason was pretty good during this appointment, and when he would get a little fussy during his stretching, Mom's rendition of "Mickey Mouse Clubhouse" calmed him right down. The stretching and measuring showed that Mason's heel cords and hamstrings are incredibly tight. More about that later. Mason's mood started to deteriorate a little bit at that point...you could tell he was fighting the urge to nap.

Quickly afterwards, off to OT. We put Mason in the kid cart and got him to do some coloring on paper, but for the most part, wanted nothing to do with it. He spent a majority of this appointment screaming. We did talk about getting a gait trainer ordered and started on this process of this by taking measurements and picking the color (my favorite part!)

Then neurology came in (the nurse) to take Mason's measurements. Mason weighs 30 lbs, 3 oz (with clothes), so we'll go with 30 lbs. His length is 91 cm. He is at the 25th percentile for height and weight. I didn't catch his head circumference, but know its at the 10th percentile.

Shortly afterwards, Mason fell asleep. Of course, as always, then it was time for the speech appointment. We talked to her about what words he is saying, how he's communicating, etc. We mentioned the fact that the geneticist had told us we should look at alternate forms of communication and she cautioned us to wait on that. Reason being, if insurance approves a device, and we learn that it doesn't work, it is extremely difficult to get something new. Apparently, the school also has this equipment for us to try in the meantime. We talked about the new consonants that Mason should work on, M, N, D, etc...but the facts are very real to us. Mason doesn't close his lips, like hardly ever. So it's quite possible that I'll never hear Mama, and Daddy will never hear Dada, but doesn't mean we aren't going to try like hell to work on it. ;)

While still napping, Physical Medicine came in. This doctor is my favorite. Quick...to the point...has a plan. She will help us by writing the physician referral necessary for the gait trainer. She also thinks it's time for Botox. Even while sleeping, Mason's legs were very tight. There are 3 ways we can approach the botox shots...with no anesthesia, with versaid (so Mason doesn't remember it) or with full sedation. Because of the work with all the other methods, we chose no anesthesia. Our kid is a tough kid...the shots will hurt, but it would all be over in about 20 minutes. The botox actually blocks the connection between the nerves and the muscles, and takes about 10 days to be fully effective. The botox effect on the muscles can last from 3 months - 6 months. We had originally thought we would be upgrading to new AFO's this visit because Mason can slide out of his current ones, but we're going to wait to see how Mason fits in them after this round of Botox. It will be about 8 shots, 4 in each leg...and if there is enough "juice" left, perhaps a little near his thumbs, since they are always tight under his other fingers. So, the insurance preapproval was put through, and we were hoping it would get approved right away, but no luck. We'll be going back in about a week to get it. We also thought we might increase Mason's baclofen prescription, but Mason is at his maximum for his weight. So...if he gains 3-4 more lbs, its a possibility. However, we're really hoping this new plan with Botox will relax him enough to sleep better at night so that an increase in baclofen is not necessary.

The last visit was with Dr. Koehn. We are not increasing his seizure meds, as he has not had any episodes for a year, but we know that not increasing him to counteract his weight gain will likely have some seizures peek through at some point. It's scary knowing they will happen again at sometime, but we do know they have a tendency of coming when he's got a fever, so at least we'll be a little more prepared. It scares me this flu season to know they are more likely, but Mason got his flu shot, so that's the least we can do.

Then off to lunch.

In the afternoon, we got a wrap-up of the care plan, even though we receive mailings of all the doc reports in the mail. I think the wrap up meeting can be eliminated...but that's just my opinion. The one good thing out of the wrap up meeting is that we talked about getting a handicap parking sign to use when we have Mason's full kid-cart in tow. Unloading Mason into his kid cart is difficult in a typical parking spot. I feel guilty thinking we're working the system in some way, but that will pass as we learn the convenience of traveling with Mason and having closer parking. ;)

Then, the last visit of the day - Dietician. After reviewing Mason's current diet, there were some definite concerns that Mason's diet is not complete. So we will be adding a pediatric multivitamin, Vitamin D and probably some oils for Omega-3's. And when we need oil, who do we call? For those of you that read this, and don't know this, Chris's brother Ben has a seed-pressing business and lots of oil available. The ideal oil the dietrician would like to try is flax seed oil. It will be a very little amount in Mason's food daily, just to get the brain-growing Omega's that he needs. With this addition of oil, his milk intake will need to be decreased so that we don't turn our baby into a "Buddha baby", in the docs words. We will also try some other proteins - refried beans, yogurt, cottage cheese, to enhance his protein intake. We are looking at the possibility of Pediasure, which scares me because Mason had such bad constipation on this at one point. However, if this is added, other things would be decreased. Also, apparently we can get a prescription for Pediasure to have it covered by insurance. Crazy!!!

Long day...and now Mason is napping. He didn't eat really great today, so I'm sure he is going to wake up very hungry in a few minutes...so I better get prepared.

Thank you all for keeping up with us! I hope the medical mumbo jumbo didn't bore you too much!