Busy Busy Bees

This week has been one of those where you hold on tight and enjoy the ride. Or try to enjoy it. Or maybe just try to get through it. Last week was the much awaited ENT appointment to address the boys' breathing issues while sleeping. Bleh. It's taken four months - and three or four appointments - since their sleep studies in early December for the ENT to decide these kids are way out of his league and finally put the referral through to the pediatric sleep center at Shands in Gainesville. In the meantime, while Beans has remained fairly stable with his sleeping, Little Man has deteriorated. Horrible trouble getting to sleep, staying asleep and snoring like an old man when he is actually sleeping. His night nurse has been checking him extra because he's making so much noise.

ENT assured me that an appointment would be scheduled quickly, but this isn't my first day on the job. :P Anyone who has dealt with the referral process won't be surprised to know that we haven't heard a thing about the appointment, even with his CMS nurse following up on the referral a couple days ago. CMS nurse was honest with me and said that these things can take a long time to get scheduled. No surprise really, but when your kid drops his oxygen level when sleeping you'd like to know he's really okay not being monitored at night. Little Man's levels only dropped to 83 but that's plenty low enough for me to worry, being a mom and all.

Today Little Man had his combo psychiatrist/behavioral pediatrician appointment (they see him together). The past couple weeks have been beyond horrible. He's gradually been sliding downhill over the past couple months but these weeks I think he jumped off the edge and dragged the whole family, and likely his teacher, with him. Aggressive, irritable, impulsive, sometimes not going to sleep until 4 am, and other mornings waking for the day around 3 or 4 am.

In addition to the lovely behavior issues, his coordination and balance have decreased significantly. His pediatrician noticed it at his checkup in March and the psychiatrist and behavioral ped couldn't miss it today. His speech is also often slurred and he frequently has trouble finding the right words. The doctors today are very alarmed. They said the increase in behaviors plus the neurologic decompensation are big signs that we're missing another neurological component to his overall picture.

This led them to order an immediate EEG (well, later this afternoon, but still dang quick), they're calling his neurologist and writing a letter with their concerns to get him in as soon as possible, they're also contacting the geneticist to get their input. In the meantime, they switched one of his meds and added back in a seizure med (Trileptal). They're not sure if he's having some sort of seizures that are triggering some of this or not, but the Trileptal also has mood stabilizing properties so it's a good place to start.

When we left the psych appointment, we raced across town so I could take my anatomy practical then we raced back across town to get to his EEG at 12:30. He was such an angel for it! He held so still while she glued all the electrodes on his head, as soon as he was allowed he went right to sleep.No obvious seizures appeared on the EEG, but we won't get the final report until Tuesday. I'm not sure if a normal EEG rules out seizures or if it just means he didn't have one then. It's probably a question for the neurologist.

Obviously, hearing that your child with so many issues, has yet another one - another neurological one no less - that hasn't been identified yet is a lot to deal with. We likely won't have answers for at least a few weeks. We have to travel to Jacksonville for the neurologist, Gainesville for the sleep clinic and luckily genetics comes up here. I just hope these new meds give his body and mind some relief. He feels horrible being out of control. He tries so hard, but sometimes he just can't do it. Hopefully we can get answers. It's difficult to fight the unseen enemy and just keep trying to treat symptoms as they arise, without knowing the cause behind them.

On a totally different, much happier note, Beans started soccer this week! He absolutely loves it. His days of being an impish little brother have served him well. He's not afraid to get right in there and snatch that ball away from the other kids, even though he's the smallest. He loves being part of a team.

Running with his team - at the front of the pack no less

Right before he stole the ball away as his friend went to kick

Showing off his kick to his coach

I also got a lead on a possible daycare for Beans this summer. Little Man will be home with his nurse, but Beans would be so much happier playing with other kids and getting out of the house. Cross your fingers that it works out, as the opportunity is pretty amazing. If it works out he'll actually have a special ed teacher from his school handling his tube feeds and care and looking out for him. Can't beat that.