Oliver's Medical Update

I wanted to give a little update on Oliver since we have met with most of his doctors recently.  In May we met with the surgeons, Dr. Siddiqi and Dr. Kestle for a follow up.  They said Oliver seems to be doing well.  Dr. Kestle didn't think we needed to do an MRI of his brain or see a neurologist because he has been developing so normal.  Dr. Siddiqi changed his next surgery to when he is 2 years old to repair his nose.  I think we will also do the front of his forehead then.  They will blow up a balloon under his skin to stretch it and then pull up his hairline.  I think they will also shave some of his forehead at that time to make it more symmetrical.  Dr. Siddiqi also referred us to the Hanger Clinic to get a shaping helmet for Oliver's forehead.  They usually use helmets to shape the back of flat heads, so we weren't sure how well it would work for Oliver's case.  The back of your skull is a lot thinner than the front of your skull, so it is not as easy to mold, and Oliver is also a little older than most babies when they get a helmet, which is around 5 months old.  The helmet doesn't work like braces or hurt the baby, it just puts gentle persistent pressure on areas and allows space in other areas for the growth to go into, in Oliver's case the right side of his forehead.  So they want to have the right side of his forehead come out a little bit more and then in surgery shave down some of the left side to make it more symmetrical. Hopefully that makes sense.  I wrote this post a while ago, so I'm updating it now to say that we are done with the helmet.  Oliver wore it for 3 months and there wasn't really any difference made.  I hated that he sweated all the time and his head stunk, but the protection from his climbing and falls was nice.  When I told Hattie Oliver was done with the helmet, Hattie insisted that he wear it or else he would get hurt.

We met with the opthamologist in June, and Dr. Young said that she can tell he is favoring his strong eye more and increased his eye patching from 1 hour a day to 2 hours.  We will still wait on glasses because she wants him a little older because his prescription keeps changing, and we didn't know how long he would be in the helmet.  We also discussed his dermoid cyst in his left eye, and she said we would probably remove it when he is 5 or 6 years old.  We took a week off from patching to get Oliver used to his helmet and now we can't get him to wear his patch.  He keeps tearing it off as soon as I turn my back.  They said to keep putting it back on, but it's like a bandaid so it won't stick and I have to keep putting new ones on.

We also met with the geneticist in June.  The genetic testing we did for frontonasal dysplasia came back negative.  That was really the closest match with his symptoms.  She showed me some pictures of some other syndromes and abnormalities, but she said he didn't look like the pictures and have the same symptoms, so we ruled those out.  We decided to do two more tests that are chromosomal tests, but are low yielding results when you do not have any developmental delays.  They will do a microarray test that looks for duplications or deletions in chromosomes.  If that comes back normal, than we will do exome sequencing which is fairly new in genetic testing and tests thousands of genes.  Those are both likely to come back normal, and if they do then I guess we really won't have any answers as to why Oliver was born with some of his malformations.  I just got a letter from our insurance saying they won't approve the microarray test because he does not have any developmental delays, but Dr. Dugan is working on appealing it, so we will wait to hear from her.

We just met with an ENT, Dr. Meyers, and an audiologist for the first time today.  Oliver has had a goopy eye since birth, and the Opthamologist tried clearing his tear duct during his surgery in January, but she said it seemed to be clogged when it drained down into his nose.  The ENT said we could do a procedure where they drill out some of the bone to open it up, or we could wait and see if it gets better.  We are going to wait because it has improved since birth already.  It used to be sealed shut every time he woke up, but now it is just a little goopy on his eyelashes.  Dr. Meyers said he was also going to speak to Dr. Young (the opthamologist) and see what she thinks.  Oliver also breaths loudly because he has a deviated septum.  I thought they would fix the deviated septum when they reconstruct his nose, but Dr. Meyers said they wouldn't fix it until he is a teenager because doing it earlier would affect the growth of his nose.  We also discussed Oliver's ears.  He has had fluid in them at both his 6 and 9 month check ups with our pediatrician, but he has had colds at both appointments.  Oliver has had back to back colds for the past couple of months, which has concerned me.  It seemed more understandable in the winter when the other kids had colds too, but now it is summer and he continues to have colds the poor baby.  He had fluid in his ears at the appointment, but it looked like there was pus also, which made him think he had an ear infection, but Oliver hasn't had a fever, or hasn't been fussy more than normal or touching his ears at all.  He has had a runny nose though with green snot. Because he has a deviated septum it seems to be interfering with the drainage of his sinuses, so he continues to have chronic sinus infections.  We went across the hall and did a hearing test with the audiologist and his hearing is diminished, which is normal if there is fluid in your ears.  We are just trying to decide if the fluid has been sitting there for months and isn't draining or of the fluid is from the colds that he happens to have every time he gets checked.  He said it can take up to 3 months sometimes for the fluid to drain by itself after a cold.  At the appointment we decided to wait three months and come back and get a hearing test again to see if the fluid has drained and how his hearing is before we make any decisions about tubes.  We are going to be praying that he can get over his current cold and not pick up another one because it is so hard for him to stay well and we need to see if it's the cold causing the fluid in his ears.