Medical News

11/29/06
I am way behind on the times, I guess! This section of the site really fell off when I went back to work in August of '04. Maggie is still doing great. To look at her and spend time with her, you would never know today that she had any problems as an infant. She looks, breathes, eats, and acts like a typical three and a half year old. She does have speech issues, and has been in speech therapy since 2004. She is hard to understand, but improving all the time. She has a huge vocabulary and very advanced language skills (when you get past the articulation issues). Since the last update, Maggie has had ear tube surgery three more times...or is it four now??? The last time our ENT put in "permanent" ear tubes, also called T-tubes, so we are hoping they will stay in place longer. She also had surgery in August of 2006 in an attempt to improve her speech. This surgery, called sphincter pharyngoplasty, was supposed to generally tighten up the area at the back of her throat, making it possible for the back of her palate to contact the back of her throat. This is important during speech so that the nasal passage can be closed off for non-nasal sounds. Although the space definitely looks smaller, and some of the speech sounds are sounding better, the hypernasal speech is still a problem. She can still make sounds while holding her nose that she cannot make without (indicating that her palate is still not fully closing the nasal passage). We have not yet seen the speech doctor and surgeon for followup (Whoops! Where does the time go?), but hope to do so soon. At the current time we don't have any upcoming surgeries or procedures waiting in the wings for the immediate future.

We have been seeing a pediatric dentist (through the craniofacial clinic) since the last update here. He tells us that the repaired palate will not grow at the normal rate due to scar tissue. He told us to anticipate Maggie wearing a dental appliance followed by braces at an early age, and that oral surgery may also be necessary. All of that is in some indefinite future at this point.

As for vision and hearing, Maggie began wearing glasses in June of 2005 for astigmatism. Although the earlier reports from the opthalmologist had indicated that Maggie would develop nearsightedness, as far as we know this has not occurred. Astigmatism, though, is also associated with SS. We continue to get regular vision and hearing checks. So far there have been no hearing issues. We did not proceed with genetic testing for SS, only because our insurance would not cover it, and it is quite expensive. As for future children, we are pregnant and expecting a baby boy (Jackson Walker) in April 2007. We are being followed by a perinatologist to look for signs of PRS, agenesis of the corpus collosum (ACC), and hydrocephalus (my half-brother has both of those conditions). We had an ultrasound at 13 weeks during which the doctor measured Jackson's mandible, which was measuring normal at the time. The palate was not visible at that time (it rarely is, we are told). I did think that Jackson's profile looked more "normal" than Maggie's had at the same ultrasound during my pregnancy with her. Everything else looked normal too, so we are hopeful that this baby will be healthy and whole, though we feel much better prepared to handle what may come this time if there are health issues.

1/22/04
Maggie is doing just great!!! We completed our post-op checkup with the surgeon and everything looks great. He said that she looked all healed up, and there were just a few sutures left which would dissolve on their own. We were cleared to use any kind of feeding that we like, but Maggie's suck is still not developed enough to use a traditional bottle and nipple or a no-spill sippy cup. She is still using the Haberman and does okay with a regular sippy with the valve removed. She is currently learning to self-feed with finger foods and has done great with that. Hopefully we can make a smooth transition to solids and cups and the bottle won't be an issue past her first birthday.

Our next issues will be speech (we will have a full evaluation when she is 14 months) and of course we are following up on the genetics to find out if she has Stickler Syndrome. About 80% of PRS kids have an additional syndrome, and SS is the most common. To read more about SS, visit the Stickler Involved People website. Maggie has several physical features of the syndrome and is being followed by a pediatric opthalmologist (eye specialist) and an ear, nose, and throat doctor to monitor her eyesight and hearing. We already believe that she will be very nearsighted and will require glasses probably by age 2. We will return to the eye doctor closer to her first birthday and will proceed with DNA testing for SS if her eyesight has worsened. She is also scheduled for an advanced hearing test (ABR - Auditory Brainstem Response) in March. We hope that the genetic testing will tell us more about our chances to have another child with PRS or SS.

12/17/03
The surgery is over! Maggie came through it with flying colors. Thanks so much for all of the many prayers, thoughts, well-wishes, supportive offers, etc. You don't know how much that has meant to Mike and me. Maggie is pretty much back to normal now, eating normally, off of the codeine, and back to her happy self. We will see the surgeon for a followup the second week in January. The sutures should dissolve on their own. She will still be using the Haberman bottle until she gets used to her new palate and learns to suck (she never could without a palate to seal her mouth off!). She is snoring loudly now when she sleeps and a little stuffy nosed cold has made it harder for her to breathe at night, but she is hanging in there like a trooper! We think the snoring problem will go away once her cold clears up. Theinsurance did actually make the surgeon an in-network provider for us too, thank goodness! Visit the Surgery Information page for links to pictures, both pre-op and post-op.

10/28/03
Well we have a surgery date!!! The doctor's surgery scheduler called Mike today and said that the doctor doesn't need to see her this week after all. So the palate repair surgery is scheduled for December 12! Now we just have to get the insurance company to accept our appeal to cover the surgeon as an in-network provider, since there is no one else qualified to do this surgery in the state but our doc and his partner! Hopefully we won't have a problem. I'll keep everyone posted! I can't believe our sweet Maggie is going to have major surgery in about a month and a half!

10/27/03
Due to changes in our insurance for 2004, the cost of surgery will be going up dramatically for us after the New Year. We are meeting with our surgeon on Thursday of this week to find out whether we can move Maggie's palate repair up to December to get it in during 2003 before the changes take place. It will all depend on whether Maggie's chin has grown enough! We'll find out something on Thursday, I hope!

P.S.- The ear tube surgery went very smoothly! They were extra-special careful with Maggie because of the PRS and took lots of extra precautions. She was a little grumpy right after she came out of the anesthesia but once she got some food in her, was back to her usual cheery self!

10/14/03
Maggie was scheduled to have ear tube surgery yesterday, but it got rescheduled by anesthesia. They decided they wanted to do her surgery in the main children's hospital (Children's Healthcare of Atlanta at Scottish Rite) rather than at the surgery center, because her condition makes her high-risk. So the surgery is now scheduled for 10/20 (Monday). Most children with cleft palate require ear tubes since the muscles that control air pressure in the ear are attached to the palate. We have also recently visited the plastic surgeon. He has moved Maggie's tentative date for palate repair up to January! We will see him again in the beginning of December to see whether she will be ready and to make arrangements if she is.