CT Scan #2

Avery had her second CT Scan today. She did great and was all smiles even though she hadn't eaten in forever! Luckily, CT Scans only take minutes, so they only do a mask sedation. She was awake shortly after and we were able to go home. We meet with the CFPS in a few weeks to look at the 3D imaging and determine if and when another surgery will happen.

Craniofacial Plastic Surgeon & Orthopedic Surgeon

We met with the Craniofacial Plastic Surgeon (CFPS) & Orthopedic Surgeon yesterday. At the CFPS appointment, we were told to try another round of helmet therapy. We were supposed to have her helmet 'graduation' on Wednesday, but it looks like we will be fitted for another (hopefully insurance will fully cover it again). The helmet may not improve her head shape, but we are told it can help prevent it from getting any worse. In addition, they decided to have Avery have another CT Scan of her skull. She will need to be sedated for this procedure. After we get the results back, we will all sit down together, look at the 3D imaging of her skull & determine if there is something else the CFPS can do to improve the orbit shape. The CFPS said if he decides there is room for improvement that Avery may need to have another surgery, possibly another bone reconstruction. He didn't want to get into the details of this surgery until he determines if she will need one. Obviously, we hate to have to put Avery through another major surgery, but we want to do whatever we can to help her.

After the CFPS appointment, Avery had a Orthopedic Surgeon appointment. They took more X-Rays of her back. They determined the 20 degree curve is still present as it was at the last X-Ray 5 months ago. However, they said that even though the curve is the same, it is actually an improvement. Apparently, now that Avery can sit up, they typically see the curve get worse because of gravity playing a role. Since her curve stayed the same, it is an improvement. We will have a follow-up in a year with Orthopedics.

Sibling LOVE

A little movie of Avery & Kyler's love for each other :)

Ophthamologist

We met with the Ophthalmologist today and he said her eyes are doing great! She does not need glasses at this time and we don't have to patch her eye anymore (at least for now).

Pediatrician & Teeth

Avery had her 9 month checkup yesterday. She is developing great and even got her first two bottom teeth the other day. She is tolerating the helmet well & is back to sleeping through the night.

Cardiologist

We met with the Cardiologist today, and he said we can stop the heart medication!!! She had a good EKG and hasn't been having SVT episodes, so they think she may have grown out of her SVT. There is a 7% chance it will come back, so we still need to watch for warning signs. Otherwise, there is a 33% chance it will come back around age 8. At which time, she will be able to tell me that her heart is racing. If it doesn't come back, we will no longer have to see the Cardiologists! Cross one off her list please :-)

Helmet

We got Avery's helmet on Friday. It came in white so we decorated it with pink paint and white daisies. She is doing pretty good with it so far. She doesn't like when we put it on her head, but usually soon forgets it's there. Sometimes she tugs on it. Sleeping has been rough for her at times, but we are hoping she will get used to it and go back to sleeping through the night soon. We have to wipe the sweat off her head throughout the day. In the evening we take it off to wash her hair and the helmet for about an hour....I am sure she looks forward to that hour everyday ;-)

She will wear this helmet for 3-4 months. We will go to get it adjusted every other week. Once she outgrows this helmet, we may do another round of helmet therapy, if needed.

Helmet is covered!!!

I am happy to report that the DOC Band Helmet Therapy is covered by insurance! And, since we have already met all of our deductibles, it is 100% covered and will cost us nothing! Now, I can spend a little money to decorate it. Does anyone have any recommendations on how to decorate the helmet?

Herpangina

Avery has herpangina. Poor thing. They are blisters in her throat. She isn't eating very well, but her mood is still quite good considering. There is no medicine for it. It should last a few days. I guess that's what happens when you have a brother in preschool......

Plagiocephaly (right) & DOC Band (Helmet) Treatment

We met with Cranial Technologies today to get an evaluation for the DOC Band (Helmet) Therapy. Avery has Plagiocephaly, which is typically caused by getting a flat spot on the back of the head due to being on the back too much.....but Avery has it due to the Craniosynostosis. Helmet therapy is recommended to help manipulate the brain to grow in one direction and restrict growth in others in order to help create a more round head shape. The helmet typically fits for 3-4 months. At which time, Avery will be re-evaluated, and it will be determined if she needs to go for another round of therapy. She will have to wear the band 23 hours a day/everyday. The only hour it is off is for cleaning her head and the helmet. We will also have to go in for checkups at least every other week, if not more.

Oftentimes, insurance does not cover this type of therapy. They will contact me in a couple of days to let me know if our insurance will cover the therapy or not. If not, it will cost approximately $4,000 for the first round of treatment. Our fingers are crossed!

Plastic Surgeon, Geneticist & Helmet Therapy

We met with the Plastic Surgeon and Geneticist today. The Geneticist emphasized again, that she doesn't think there is a connection between Avery's health issues, but that genetic testing still has a way to go. She will continue to monitor and watch Avery and will likely do more testing as she gets older. She also recommended re-starting Physical Therapy to help with her tilt, spine & neck. Otherwise, she said that Avery is progressing wonderfully and developing normally. We will see her again in 6 months.

The Plastic Surgeon said that Avery's incision site is healing nicely. The symmetry is not quite where we would like it to be though. We have been referred to Cranial Technologies to be fitted for a helmet. The helmet will not guarantee to do anything, but it may help in creating more symmetry. Insurance oftentimes will not cover helmet therapy....we are hoping it does!

Avery's Eyes

We met with Avery's Ophthalmologist yesterday. She is far-sighted in both eyes and has a stigmatism in her left eye. We will need to start patching her left eye 2 hours everyday now to try and make her right eye stronger. Since her eyes have different prescriptions, she will likely need to start wearing glasses in a few months to help the eyes work together to see. We will follow up in 3 months to see if her eyes are improving or if she will start wearing glasses.

Otherwise, Avery has been doing very well. She is laughing, sitting, and eating baby food. We follow up with the Craniofacial Plastic Surgeon and Geneticist next week.