Emma's Myelo clinic

Yesterday morning Emma had her yearly Myelo clinic appointment. What is Myelo clinic you ask? Well I will tell ya! Myelo clinic is a special clinic for children with Spina Bifida. The child goes once a year to the clinic to see all their specialty dr's in one day. Yes it's exhausting but it's nice seeing them all in one day instead of a million appointments throughout the year. Depending on the child's progress and well being, some dr's will either say "See ya next year" or "we would like to see child back in 4-6 months at their own office". As of right now we only have the "see you next year with 2 of the Myelo clinic dr's, Neurology and Behavioral Development. We got to the hospital yesterday morning around 8:45ish since Emma had to go for another Urology test called a VCUG.

Our appointment with Myelo clinic was scheduled for 9:30 but we were late from the testing so we got there at 10. They understood because everyone was running behind due to testing before appointments. Here's a rundown of what each of the dr's expect from us until we see them again.

Behavioral and development- This dr we talked about how shes doing in all areas and how she's growing and if she's on track in all areas and what not. We also discussed about her tantrums lately. As of lately Emma will cry at the drop of a pin or she will scream and yell if shes not getting her way. As of right now we are taking blame for summer break. If this continues through the school year, we will make an appointment to see them again and discus further steps, like behavior therapy and if that won't work then we would take further action and try medication. I'm hoping it's just an age thing or with her being out of school.

Genetics- Next we saw the genetics dr just to touch base and see how things were and how she's doing and if any major changes happened in the household. well yeah, there were 2 deaths in the family and a new addition. So there have been some big family changes.

Gastro- Next we saw who I like to call the butt dr or poop dr. lol. We discussed how emma is doing with pooping and if shes had any constipation issues which she had a few weeks ago when she had the UTI. He asked if we were trying to sit emma on the potty at all to get her trying to poop. We havent done that yet. So what we're going to try is twice a day using a suppository and sitting her on the potty. if that works then if we're lucky we can get it to once a day and then have her on a pooping schedule. that would be nice to have done so she doesnt have a bunch of stinky diapers while at school.

Urology- next we saw Dr Ross who is a Dr who works with Dr Woo. Dr Woo is on maternity leave right now. Dr Ross went over Emma's test results from Urodynamics and VCUG. Both were fine and showed no concerns thank goodness. He wants us to try cathing Emma either 4 times a day or if possible every 3 hours. He says no big deal if you cant. Were just trying to see what works in keeping her the dryest. He was going to up her dosage of Oxybutynin but i told him it was making her hot and sweaty at times so he didn't wanna push that. He suggested that there could be a chance her sphincter wasn't closing all the way which is causing the leaks in between caths. Our options would be botox injections into her bladder or another surgery. Obviously I would try the botox 1st. but those 2 options are only if the increased cathing doesn't help her stay dry. so not a concern yet.

Neuro- Next we saw our fave dr, Dr Tomei. SInce Emma has had no shunt issues over the past year we didn't get to see her long. We will just continue our once a year appt with Myelo clinic unless we have a shunt issue.

Orthopedics- finally we finished the day seeing Dr Hardesty. We talked with her about how Emma is doing with her walker and starting to try out the fore arm crutches. We've been using the fore arm crutches very little. mostly in PT. We noticed last Monday that Emma was turning her right foot outward when using the fore arm crutches only. So until Emma is a little more older and has more control and strength we want to just stick with using the walker for right now since she doesn't turn her foot out with that. So that kinda stinks we can't progress with walking too much right now but who knows. Maybe she'll get some more strength starting all day school and doing a lot more walking. She had an x-ray done of her hips and pelvis and both look great. So we don't see Dr Hardesty for 6 months.

Today I have been on and off the phone with the secretary from Urology trying to get the Ultrasound scheduled for when Dr. Woo returns. Hopefully by then end of the day we get that taken care of. I'm so proud of all the progress Emma has been making in the past year. Her dr's are as well. It bums me out some about the fore arm crutch situation but I don't want her using them and hurting herself or her leg. That would cause a huge setback. 

I'm worried about the whole behavior situation as well. I don't want to have to resort to behavior therapy or medication. I've heard that sometimes medication will have side effects that will cause other problems and make them worse. I know there have been lots of changes at home and she's just trying to adjust to being on summer vacation. She misses being in school. She should be going back in the next month. The big kids start August 13th. I'm sure preschool starts a week or 2 later. Fingers crossed we can have good routines going by school start as well.