5 out of 7

Five out of seven ain't bad, if we're talking spelling tests. The Carnahan Clan just finished up a long week of doctor's visits. Three trips to Children's and 2 local appointments and we are thrilled to have a break for 10 days currently with no appointments. Previous to this week, Colin also had a checkup with orthopedics and all is well. They noticed a slight increase in the overall curvature of the spine, but nothing to write home about. We'll continue watchful waiting...back in another 6 months. Monday at the cranio-cleft clinic, all looks well for facial growth with the exception of his jaw, which continues to show a slight lag in growth. We'll return middle of the month for molds to prepare for braces. Not sure of the exact course of action yet, but we know that an expander is involved to allow room for his adult teeth to come in. A few of the adult teeth haven't come in from baby teeth that left more than a year ago. So...no fun, but normal kid complaints on that whole deal. Tuesday, he went to the regular pediatrician for a sinus infection. The good news? This is only the 2nd round of antibiotics for sinus infections in the past year. YES...YEAR! Which brings us to the pulmononologist, who we saw on Friday. Apparently, the new inhaler regimen is working in addition to being revaccinated last fall with Pneumovax. Colin is overall much healthier in general and, trust me, we've taken note. It's wonderful! Additionally, they repeated pulmonary function tests to verify that his overall lung volume was consistent with the last visit. It was. Overall, he is coming in at 79%. Normal ends right at 80%, so we'll take it. Because of his fused ribs and abnormalities that stem from the rib-to-spine junction (I'm sure there's a more technical term), he doesn't have great rib movement and therefore the lungs can't expand as fully as they might otherwise. So again, watchful waiting, if the curvature increases any, the rib maneuverability might decrease more and decrease lung volume more, which ultimately may result in pulmonary therapy to help prevent increased infections again. Fingers crossed things stay the same and we never cross the PT bridge. But, I can't express how thankful I am to finally have some of his chest pain/asthma/infection issues under better control. AND, he thinks he's running faster these days. :) Huge bonus, of course!

Jax visited the gastroenterology clinic today at Children's to see if we can't get a little better control over his reflux and the night waking. We're stopping the Zantac and moving to Prevacid twice a day rather than just once. I'm hopeful this will make things better as his tummy seems mostly to hurt only at night whereas mornings after the Prevacid are pretty good. They'd like to do a barium swallow to see how he handles food from mouth to belly, since he still prefers liquid food over solid for the most part and does a lot of choking and gagging. They've also referred him for a food therapy evaluation to see if he is on target for his age. I haven't scheduled either of those yet. Going to see how the Prevacid works and go from there. I honestly think that if his stomach were under better control, he'd be a much better eater. Who wants to eat with heartburn? Not I said the fly.

The last appointment was for me for a followup from a uterine infection...crazy, I know. No clue how that happened and if it hadn't been for my annual GYN visit, I probably wouldn't have even known. I guess that's why it's important to go every year. Not preaching, just sayin! But after 2 weeks of antibiotics, I have some energy back. YAH!! Apparently I couldn't blame my exhaustion completely on Jax's inability to stay asleep for more than 3 hours at a time.

So that's the story...horribly long week is over. I seriously need a better personal assistant. This one does a horrible job of scheduling appointments at even intervals so I'm not overwhelmed. *sigh* Good help is so very hard to find these days. Anyone looking for a job? The monetary pay sucks, but it includes lots of priceless hugs and kisses from 3 super adorable kids!!

An unexpected slow down.

I haven't been feeling well for the past month now and it turns out that my gallbladder has decided it needs to take life a little easier. It's working, just slowly and I have yet to discover what that means for its future. Apparently, since turning 30, my body has decided to start acting older. Life has been just as busy as usual and I've been working hard at just trying to keep up. For this girl that goes nonstop, this slowing of the insides has been bringing me to a crawl and I'm frustrated more than anything. I'm just plain tired. It's one thing when life slows down. It's another when you slow down and life just keeps going. Unfortunately, I have pushed some of the nonessential items to the side in order to keep things going, such as posting here.

On to some updates.

Colin lost his dear Philbert a few weeks ago and we dealt with the devastation of losing something so loved. We have since aquired 2 new turtle friends who have yet to be named. We are waiting to discover whether they are male or female which won't happen until they are a little bigger. It turns out, after a discussion with the store owner who sold us the turtle, that Philbert was indeed a Phyllis.

Colin also had an appointment earlier in the month with the Craniofacial team which was very promising. The asymmetry in his face seems to have slowed. He is currently at a 7-8 degree difference, which is actually rather minimal in the whole big picture. His upper palate is still too small to accommodate his teeth and will have to be expanded. If he loses more teeth in the next 6 months, he will have the expander placed. If not, we will wait things out another year. The Singulair has been so helpful for him. No more coughing fits, although we had to fight for weeks with insurance to get them to cough up payment.

Insurance, insurance, insurance...we just recently discovered that Jeremy still has coverage with his past insurance...long ridiculous story in which the blame mostly lies in our lap but nonetheless our newest insurance has retracted all payments since January and we are now fighting to get things resubmitted and taken care of as well as removed from our credit history. Thank goodness for insurance, but it is really draining me these days.

Chloe is fantastic. She was evaluated for her speech and is average, which is a relief. My child is average. It is such a shame that we, as parents, constantly fall into the trap of comparing our children. We compare them to each other and with their cousins and others in their peer groups. It really is terrible. Colin talked late but took off as soon as he begin. I have spent the past 6 months trying to figure out what was "wrong" with her. I am now forcing myself to drop the issue. She is fine. She is better than fine. She is a sweet genious without a voice. It'll come to her. I just need to give her the space to find it. She is still as in control of this house as ever, but she makes us all laugh daily. She really is a joy.

So, minus the gallbladder and the unexpected crawl my body has forced me into, life is good.

Tonsilitis.

So, that's a new one. Colin's actually never had that before. We had our ENT check up on Thursday and is on antibiotics for the tonsilitis. Everything else looks good and we are setting the ball in motion for another repair with a full thickness skin graft of his left ear. He has requested that we put it off until December over Christmas break so he won't miss school. He had a dentist appointment and his jaw is still shifting...3 mm total. We see craniofacial again and September, so we'll have to see what they say about the shift and the tonsils. They have concerns for removal because of his paralyzed palette...increase of infection and such, but ENT has concerns of continual infection becoming a new issue...so time will tell I suppose.

Chloe's Cold and Colin's Teeth.

Chloe's had a runny nose for what feels like forever, so yesterday, after more than 2 weeks of wiping, we headed to the pediatrician. She has a sinus infection. After only 2 doses of amoxicillin, she seems remarkabley better.

Colin headed to the dentist today for a routine check-up. His jaw has shifted more over the last six months and his dentist is concerned with how tight his facial muscles are. The tightness is making is more difficult for him to open his mouth fully. So, he is going to consult with the craniofacial team and we are now on a 3 month recheck schedule for the dentist. So much for routine. The top middle front tooth he has left is incredibly loose, but will not come out. The dentist said that it is because of the lack of room for his adult teeth, the roof of his mouth is not expanding as wide as it should and is creating pressure around the tooth, which is no longer attached. So, as a result, the inflammation is causing an infection in the surrounding gums. But, not a single sign of decay! Yah! No cavities in sight.