Medical is catching up

For a couple of years now I have been telling myself that Bella has a lot of issues to deal with, but luckily they are developmental and not medical.  We have been dealing with her ear infections and teething of course, but I don’t count those as real medical conditions.  Bella being the one in pain from them might argue with me.  I used to belong to groups with families who had children that were similar in diagnosis to Bella.  A lot of them dealt with many medical issues that ranged from minor to extreme.  In fact a lot of the kids spent a lot of time in the hospital.  I felt lucky that we didn’t have to deal with that.

I’m beginning to feel like Bella’s medical experiences are starting to catch up with her.  We see a lot of doctors but it’s more for routine management of her needs.  Last week we had her annual cleft palate clinic visit.  It’s the one where we are there for half a day and see a round of different doctors, therapists, and groups.  Anything that could pertain to a child with a cleft palate.

We started off with plastics, who don’t have much to tell us, and actually have graduated us from the clinic.  Basically Bella is so far behind on all aspects, it doesn’t do us any good to attend the clinic, instead we need to see the groups individually for other reasons if needed.  I completely agree with this point.  We won’t need to see plastics anymore as the only reason Bella would need another surgery would be if her speech was nasally, since she has no speech, that isn’t a concern of ours.

Next was speech.  Usually they do a test to see where Bella places.  We didn’t do this.  They asked some questions and asked if Bella was getting adequate speech therapy.  She is currently getting speech through school and I asked for a list of home speech therapists that we could look into coming into our home and doing more therapy if time permits.

Then came occupational therapy.  We mainly discussed Bella’s eating and feeding habits.  We talked about getting Bella into feeding clinic through the hospital so we could work on chewing and self feeding.  We have the appointment scheduled in a couple of weeks, so I will have to update you on how it goes.

Lastly we saw ears/nose/throat, who looked at Bella’s ears.  Both looked good at this point.  At some point soon we need to schedule another hearing test from brain waves, we are going to try a sleep test versus the under anesthesia test we normally do.  I’m a little worried Bella won’t actually fall asleep for it though, being that she doesn’t have the greatest track record with sleeping.  Her doctor also wanted to run some labs to check some levels and see if there were some indications it could show as to why she wasn’t sleeping.

So we headed downstairs to get some labs and x-rays done.  The x-rays were needed on her back and hips and had been ordered for over a year, but I had never had time to get it done with her yet.  At this point we had already been at the hospital for 3 hours and Bella wasn’t in the greatest mood.  The x-rays were up first and Bella had to be held down by 3 people to get the films, she was screaming and not happy.  It took quite a bit of time to get all the different angles done.  I felt bad for her and it wouldn’t have hurt at all, but she didn’t understand that she needed to be still, so everyone had to grip her pretty tight to get her still because as soon as someone's hands were on her, she fought even harder.

Next up was the labs.  When the doctor ordered them, I didn’t even think about it actually being a blood draw from her.  So I had to sit in the seat and hold her still while another nurse tightly gripped her arm and another one had to stick her with the needle.  I was praying the whole time that the nurse would be good and get her with the first stick.  Luckily she did.

And 4 hours later we headed home.

Well today we got the results from the lab work and x-rays.  The lab work showed that her thyroid levels are off and we now need to see an endocrinologist.  They also showed that she is anemic and needs to be on an iron fortified vitamin.  This puts a whole new spin on her nutrition.  I’m thinking I need to get a degree in nutrition to feed Bella, I’ll discuss this at a later date.  Her x-rays were the more disappointing news.  Bella has scoliosis (still mild at this point) and her hips are not completely in the sockets.  So we will be seeing both a spine orthopedic surgeon and a hip orthopedic surgeon.  The question will be, do we think Bella is in pain?  If we think she is in pain then for the hips it could mean surgery or some type of brace.  For the scoliosis it could also mean some type of back brace.  And I honestly don’t know how in the world it would work out to have Bella in body braces.  I’m fairly certain she would hate it and not understand what is going on.

I think at this point it is most certain that Bella’s muscle tone is so low that she will never be able to do any weight bearing.  In fact the hip problem and maybe even the back problem are due to the fact she doesn’t have strong enough muscles to hold the bones in place.  This could mean as she gets bigger we will continue to run into more problems.

So it’s been kind of a disappointing and sad day around here.  Just more things this poor little girl has to deal with, and her parents too!!