Pre-Op Appointment

We had Avery's pre-op appointment today with Dr. Cohen. There wasn't a lot of new information, as we have researched so much and learned so much already (to read details of the surgery, please see other post where I describe it). She will have stitches on her head instead of staples. These will dissolve. All of the screws and plates they will put in her head will also dissolve. There is a 15% chance she will need another surgery around 4 years old.

We are very anxious to get the surgery over with. It has been a LONG 5 months!!! Hopefully, once we get the surgery over, the heart problem corrects itself, and the scoliosis & torticollis improve we will finally be done ;-) or so we hope....

A special thank you to April May

I want to give a special Thank you to my new friend, April May. She doesn't even know me and she re-designed this blog for me out of the kindness of her heart. She did an absolutely beautiful job. I want to THANK YOU APRIL!

Neurosurgeon called & Orthopedic Surgeon

Our neurosurgeon, Dr. Meltzer called today. He wants us to see a pediatric orthopedic surgeon, Dr. Newton. We are scheduled for April 13. He wants to have an expert look at her back and determine if she does have scoliosis, and if so, we will need to have an MRI done of her spine. He also informed me that the 'stuff' behind her eye is actually just what appears to be extra fat. This is likely an illusion caused by the fact that her head/eye is deformed from the Craniosynostosis. He doesn't think they should do anything about it during the surgery. We will likely still have the Ocular surgeon there, just in case.

MRI Results

Our Craniofacial Plastic Surgeon's nurse, Julie, called us last night. Apparently, the mass in her orbit is no longer considered a mass, which is a good thing. However, they don't really have a label for it. The ocular surgeon will still need to determine what to do with it during her craniosynostosis surgery.

Physical Therapy

Avery had her bi-monthly physical therapy appointment yesterday. Apparently her torticollis isn't improving much. Our physical therapist, Monica, wants to see Avery more often until her surgery. After her surgery, we will reevaluate and determine what to do. She will likely be referred to a Orthopedic surgeon to evaluate the scoliosis, which is causing the torticollis.

MRI #3

Avery had her 3rd MRI today. They wanted to check the growth behind her eye one last time before surgery. They also want to ensure the 3 growths in her brain are gone. When she went under anesthesia, her heart rate dropped suddenly and they had to adjust her dosage. They believe this was due to the Propranolol (heart medication) she is taking. We will need to let the anesthesiologist know that from now on. We should have our results in a couple of days.

Disneyland

Disneyland was a great distraction from everything. It felt good to do something special for Kyler before Avery's surgery. His favorite ride was the elevator in the hotel!!!! He loved seeing Mickey :o)

Details About the Craniosynostosis Surgery

A lot of you have been asking what the details are about the Craniosynostosis surgery (She has right-unicoronal non-syndromatic craniosynostosis). Here is some of the information I know right now:

-They will cut a zig-zag incision from ear to ear over the top of her head.
-The scalp will be peeled back and the forehead taken apart.
-The Craniofacial Plastic Surgeon (Dr. Cohen) will put the forehead back together with dissolvable screws to give her head a more round & even appearance.
-The Neurosurgeon (Dr. Meltzer) will monitor the procedure to ensure the brain is intact and be there should any issues occur.
-The Ocular Surgeon (Dr. Kikkawa) will look at the growth behind her right eye and determine if he should: take it out, take a piece out and biopsy it, or leave it alone.
-Blood Transfusions are needed 50% of the time.
-The forehead will be put back and the incision will be closed with ~50 staples.
-When her hair grows in it should cover the incision.
-Duration: 4 hour surgery
-Her heart will be monitored the entire time to ensure that her SVT (Supraventricular Taccycardia) is controlled.
-Stay in hospital: at least 4 days
-Only mommy & daddy are allowed to visit her.
-Her head will swell huge (like a basketball it was described to me) and her eyes will be swollen shut.
-The height of the swelling will be around day 3.
-We can go home once the swelling starts to go down and her eyes are opening.
-She should be looking pretty normal after 2 weeks.

We will learn more details at her pre-op appointment scheduled for April 7th.

Geneticist called last night

The Geneticist called us last night. In light of Avery's new health issues, the Geneticist wants to see Avery again. She said that the genetic panel she ran with Craniosynostosis Syndromes came back negative (which we are very happy about). She has also been researching databases with Avery's criteria, and it has come back with nothing to link it all. She will want to run some more genetic tests. After Avery's surgery, and the growth behind her eye is biopsied, we will meet with Dr. Jones again and continue to investigate a link to all Avery's health conditions.

Jason is O-!!!

After starting a search to find a family or friend who is O-, we are please to announce that Jason (Avery's Daddy) is O-! We started asking around before Jason was able to test himself, certain that because there is only a 6% chance to find someone O-, that he wouldn't be. But, it looks like our luck is changing. He will be donating blood for Avery's surgery on April 3rd.

Cardiologist

We met with the Cardiologist today and he said we only have to give her the heart medication 3 times a day. No more waking her in the middle of the night (she slept 11-12 hrs before I had to start waking her to take her meds). He also said that around 8 months of age, she will go off her medicine, get an EKG and see if the SVT is recurrent. 1 out of 3 times, it does recur (and she may have a higher likely hood of it recurring since it did already from when she was in-utero). Otherwise, it may occur around 7-8 years of age. At that time, she can handle the episodes herself with various techniques.

The picture above is of my son, Kyler checking Avery's heart ;-) He said "Don't worry mama, she's all better"!!! He is such a great big brother.

Pediatrician & Neuroblastoma test results

I didn't mention it in my last blog, because I didn't want to overly concern anyone, but we had a Neuroblastoma test done while we were in the hospital. A few of her health issues were markers for the rare cancer. Well, last evening our Pediatrician told us the results were normal & she doesn't have the rare cancer! ;o) We are extremely thrilled! We are still waiting on genetic testing that was done. Those results take much longer.

Our pediatrician also said that he doesn't think we should treat the fused labia, or do anything about the scoliosis. After her surgery, he thinks the scoliosis will be much better and will likely never need any treatment.

We did receive a prescription for an ointment for her right eye. I noticed while she was sleeping at the hospital that she was unable to close it completely, so we will need to put an ointment on it before bed each night.

I am off to the Cardiologist today. Will update again soon.