Showing posts with label Evan. Show all posts
Showing posts with label Evan. Show all posts

Thursday, September 25, 2008

Surgery

Evan 2 weeks old.
Evan now. What a face! I could just eat those double dimple cheeks of his.
Well, I have spoken to Evan's ENT. It looks like Evan will have surgery. The way it was explained to me was that we will need to do the surgery in two parts. The 1st surgery will consist of lengthening his soft palate. It looks like Evan has a deep pharynx, which can then create the look of a short palate, even if it is not, because the palate and the pharynx never touch allowing air to escape out of his nose. It is possible he may need a 2nd surgery to add more skin to the back of the throat to create less of a gap. We are hoping the 1st surgery is all that is needed, because having the 2nd surgery often times causes sleep apnea. With Evan being a terrible sleeper as it is, I am praying the 1st one works for him. We scheduled the surgery for January 14th, after the holidays, and when Evan's ENT will be back in the country. Below is some more information for those of you who are interested on the medical part of it.

Deep Pharynx — This is the most difficult to recognize since the deficit is in the size of the nasopharynx and not of the soft palate. The soft palate may appear normal by oral exam. The velopharyngeal deficit can be identified only by lateral radiographs or lateral fluoroscopy. The primary features are the speech characteristics of hypernasal resonance, nasal air escape and possibly “cleft palate-like misarticulations” without obvious physical deficits. Other characteristics are nasal regurgitation as a newborn, difficulty nursing and delayed, hypernasal speech with normal language development. The speech-language pathologist is extremely important in the ultimate diagnosis and referral for appropriate evaluation and management of disorders of the deep pharynx. Speech deficits are the primary characteristics.
VPI is often not diagnosed or diagnosed late because the palate appears normal and the pharynx is not evaluated. When diagnosed after speech has begun, sparse adenoid mass may be a factor.
Hypernasality is the primary presenting factor. Hypernasality may be present from onset of speech — some children do not grow adenoids. After adenoidectomy — deep nasopharynx is unmasked (velo-pharyngeal mechanism seems able to adjust to slow involution but not the sudden increase with adenoidectomy).

Tuesday, June 17, 2008

Appointment Central

This is the week of appointments for Evan. Yesterday he had his typical speech appointment, today he went to the dentist for the 1st time, Thursday he goes in for his 3 year check-up and shots, and Friday he gets fitted for his night casting for his legs and ankles. Sheesh! Every week we have something, but the appointments are not usually this plentiful. Today I took him to the dentist for the first time. It actually was an appointment I was dreading. Not because I thought he would have a hard time, but because I was scared of what they would find. Well, I had reason to be scared. Kids with 22q11.2 have poor quality teeth a lot of times. Evan also has an extra tooth which is sometimes a characteristic of children with palate issues, or they can have missing teeth. His extra tooth is an incisor. He also has a chipped front tooth that he did sometime in his second year. But today, the dentist found 4 possibly 5 teeth with cavities. There could be more, but it was hard to get x-rays. He is going to research the decaying issue within Evan's syndrome and then we will get a referral for sedation to take care of the cavities, x-rays and sealants. My poor boy! I am glad they can sedate him for all the work they will do. But, this will be a life long battle to keep his teeth as healthy as possible.

Sunday, June 15, 2008

Happy Father's day Happy Birthday


Today, we are celebrating Fathers. Happy Father's day to all the Dad's in our life. Our family is also celebrating the birth of our son Evan. He is 3 today...my baby. Hard to believe I was induced at about this time 3 years ago, and about 8 hours later my little boy came beaming into the world. Life has not been the same since he joined our family. He is such a blessing to us. All the trials and hard work is paying off for our little Evan....and he is a child of God. How could you not love that face :-) Happy Birthday my sweet boy!