Last Monday, Meghan had a full day of appointments and procedures. We started the day with a sedated MRI of her brain and spine. This took 1.5 hours. When she came back to the recovery room, she had her skin biopsies and AFP blood draw (tumor marker test). The biopsies and blood draw were done while she was still sedated so she wouldn't feel anything. After she woke up from sedation, she had her abdominal ultra sound. The last appointment for the day was with Neurosurgery. She handled the busy day very well! She is a trooper! Here is what we know so far from results. Hydrocephalus and Chiari are stable at this point. In March, Meghan's ventricles had gotten too small from her shunt overdraining, so the Neurosurgeon turned her shunt up by 1 setting. The reason he did this was because Meghan was at risk of having slit ventricles if her ventricles became too small in size, so turning the shunt setting up should increase the fluid in the ventricles and fill them up to a more normal size.  The hope was on the MRI she had last Monday, her ventricles would increase in size since having her shunt setting turned up. When the Neuro read the radiologists report from Mondays MRI, they reported that the ventricles didn't change in size...however, when the Neuro compared MRI images with us from the last MRI to Monday's MRI, they clearly increased in size. Not much, but they increased, and that is what we wanted to see! The change that we saw is on her spine. She has always had 2 syrinxes throughout her spinal cord. She now has 3 syrinxes. Also, one of her existing syrinxes increased in size. The Neuro did mention to us that when a syrinx reaches 5 cm in width, they think about placing a shunt in the spine to drain the fluid from the syrinxes. Meghan's biggest syrinx size is 3.4 cm. So for the time being, we are just watching and waiting to see what happens. We know that the possibility is there to have a shunt placed in her spine, but we also know miracles happen! The reason for the shunt is because syrinxes can cause permament nerve damage if they get too large. The abdominal ultra sound came back with good news…no tumors!  The AFP levels are within normal limits as well!  We are waiting for news on the biopsies, but it could take 1-2 months before we get results.  We got bad news that Meghan’s Geneticist is leaving Children’s to go to a different hospital out of state.  We are sad to hear this, as she has been working very hard on helping us try to get answers.  We have an awesome care team and it’s hard to see someone go.  But, I am sure the new Geneticist will be just as good!

Waiting for IV placement - pre MRI

 

 

Post MRI, biopsy...waiting for sleeping beauty to wake

Waiting for our last appointment for the day!!  Almost done!

Meghan had a pre-op a few days before her MRI.  During the exam, the doctor found that Meghan had middle ear infection in both ears.  He did a tympanogram on her ear drums.  A tympanogram tests how the eardrum and middle ear are working. This test is important because fluid or other problems in the middle ear can affect hearing. Fluid in the middle ear can cause hearing loss. During a tympanogram test, a small earphone is placed in the ear canal and air pressure is gently changed. This test is helpful in showing if there is fluid in the middle ear.  Meghan’s ear drums didn’t measure any movement and they were completely full of fluid.  She was put on an antibiotic and nasal spray to try to get the fluid to drain on its own.  She will have her ears checked again in a few weeks and if the fluid is still there, she may have to have surgery to drain the fluid.  Apparently, it is not painful when you have fluid in the middle ear, so if she didn’t have her pre-op, who knows how long it would’ve been before we found the problem.  When you have fluid in your middle ear, people sound muffled and they are hard to understand.

Growth hormone shots have been going okay.  She asks for them every night because she knows she gets a treat after the shot, but she starts to cry as soon as we get everything ready.  Breaks my heart every night, but I know it needs to be done.  We have 2 full weeks under our belt already with shots.

School is going really well.  We had our first conference with her teacher and she is doing a great job at school.  She is making adequate progress in all areas.  Speech and motor skills are still main areas of focus.  We need to decide by the next IEP team meeting in March/April, if we want to transition Meghan into a preschool class that has typical kids and special needs kids mixed together in the same class for next year.  If we all decide that transitioning Meghan would be appropriate for her for next year, she will most likely have a more one on one Para with her, mainly for safety reasons since she is quite smaller, and delicate :)  It doesn't take much to knock her over.  Right now, her class size is 6 kids.  If we would transition her, she would be in a class size of roughly 10 typical kids and up to 8 special needs kids.  The teacher said her concern with transitioning her next year is that the other preschool moves through the day at a much faster pace and she isn't sure Meghan would be able to physically keep up with the others.  Cognitively she is ready to be transitioned, which is awesome!