This is our surgeon, Dr. Lisa Buckmiller. She will always be our hero. She gave Mari-Grace her smile!
This is Dr. Buckmiller's cleft team nurse, Emily. Emily is AMAZING. She is always there to answer questions for us, day or night. It doesn't matter how big or small our need is, Emily is there to support us !So, we went to AR Children's Hospital for our follow-up on Feb 8, 2012. We arrived at the hospital at 7:15 AM. She saw the Cleft Team speech therapist first. Beth is awesome with MG. She is so incredibly animated. With her years of experience, she knows how to handle kids and she is perfect for the job. MG actually cooperated with her this time, so Beth was able to do her first complete evaluation of MG's speech. Beth was pleased that with a little instruction, some que's and prompting, MG was able to form the proper sounds for each of the consanants they use to make sure the palate is functioning properly. YIPPEE !!!!
As of right now, Beth thinks her speech development is right on target. That's a HUGE relief. We have 2 speech therapists (ST) we see regulary. One is a little conservative, and erring to the side of caution. She gets frustrated that MG isn't progressing faster. The other ST is very positive and upbeat. She is always encouraging and sees the big picture of where we were 4 months ago and how far MG has come. It was nice to hear from an impartial person that MG's speech is actually on target. Beth says that while MG is not spontaneously artictulating the sounds correctly, the fact that she can do it with prompting is good. This indicates her palate is getting good closure and functioning properly.
Beth also tested to see if air was escaping from Mari-Grace's nose when she talks. This was done by holding a small mirror under MG's nose and asking her to repeat consonant sounds. We expect to see air escaping with the /M/ and /n/ sounds. The only other sound MG seemed to lose air thru her nose on was the /s/ and /sh/ sounds. All of the others .. no loss of air thru the nose !!!! THAT's GOOD !!!!
Beth seems to think, that if we continue the intense speech therapy, we will see good progression. If MG continues on this course, we may be able to avoid the surgery in which the palate is lengthened to improve MG's speech. That is good. Anytime we avoid a surgery, it is good for MG, but the surgery to lengthen the palate has the potential for lots of complications. It is a difficult procedure, so if we can avoid it ... that is AWESOME!!!! The cleft team and our speech therapist will continue to monitor MG's speech progression. At some point in the future, we may have to have a nasal endoscopy, where they look at her palate, thru her nose, to see how the palate is functioning. But for now, we continue as is !!!
Next we went to audiology for hearing tests. MG had an ear infection 2 weeks ago. Her tubes, that were placed in Sept 2010, had worked themselves out of her eardrum. Cleft kids have short eustachian tubes, so they are more prone to develop ear infections. MG is 3 years and 10 months old ... this is first ear infection she has had. It was horrible ... she cried all night one night from the pain. Luckily with antibiotics, the infection cleared, but she still had some fluid in the ear ... which is normal after an infection. Unfortonately, the fluid in her ear canals made the testing a little more difficult. When they used just headphones that fit over her ears, MG had some trouble hearing the sounds. The audiologist was very patient, and decided to try a set of ear phones that fit inside the ear. When they did, MG's hearing tested perfectly normal. The audiologist said that it is not uncommon for kids who have had recent ear infections, who still have fluid in their ears, to not hear well with the external earphones. SO ... long story short ... hearing is FINE !!!!
Next step ... the ENT.
Dr. Buckmiller is our ENT/cleft surgeon. She was very pleased with the speech evaluation and also the hearing exam. She examined her ears and confirmed what the pediatrician suspected ... MG's tubes were out. Dr. B warned us that MG might experience ear infections more frequently until her tubes are replaced in April.
MG has had a chronic cough since October. Dr. B sent her for a chest x-ray, which was clear. Dr. B suspects that her cough may be reflux related. MG doesn't really have any reflux symptoms, but about 80% chronic coughs in kids are related to reflux. Dr. B explained that coughs can be a viscious cycle.
Reflux triggers cough ---> cough irritates mucous membranes----> membrane irritation triggers drainage ----> drainage irritates reflux, etc.
SO ... MG is now taking prevacid for reflux and using a steroid nasal inhaler to help with the mucous membrane irritation. So far, the cough hasn't improved much, but Dr. B says it may take several weeks for things to change.
Dr. B examined her palate. Her exact words was "That is a beautiful palate". It has healed exactly like she wanted the palate to heal.
We also discussed what would be done at MG's surgery in April. First of all, Dr. B will replace Mg's eartubes. Next, she is going to do a good exam of MG's voice box and airway just to make sure there is no clefting that is causing this cough. She says clefting in the voice box and airway is possible, but very rare. She doesn't think that is the issue at all, but she's going to look anyway while MG is under anesthetic.
The big part of her surgery will be some nose reconstruction.
The next couple of pictures are up close photos of MG's mouth and nose.
In this pictue, you can see that the columella ... the piece of tissue that separates her nostrils, is very short. When MG's initial lip adhesion was performed there was very little "lip" material in the middle of her lip. When the actual lip revision was done, the columella was pulled downward to form the upper part of her lip. As a result, the nose became very flat and her nostrils are more like slits. Also note that on the upper lip, there is kind of a white ball in the middle of her lip. We learned that this is NOT scar tissue. It is actually excess skin that was used in the lip revision to create fullness in her upper lip.
Right now, if you look at MG's profile picture, her face is flat. She has no real profile. The surgery that she is having in April will create a profile. The columella will be lengthened giving her a more 3D nose.
Look closely at the picture .. you can see a thickened area at the base of her nostrils. This is actually scar tissue from her previous surgery. The amazing thing is ... it's not JUST scar tissue. This is the tissue that Dr. B will use to create the columella. She will snip the tissue somehow, pull it together, and stitch it to the tissue that is already there. That will round out her nostrils and raise her nose off her face. It will also "hide" the scars.
Look closely at the picture .. you can see a thickened area at the base of her nostrils. This is actually scar tissue from her previous surgery. The amazing thing is ... it's not JUST scar tissue. This is the tissue that Dr. B will use to create the columella. She will snip the tissue somehow, pull it together, and stitch it to the tissue that is already there. That will round out her nostrils and raise her nose off her face. It will also "hide" the scars. All I can say is WOW!!!
Emily warned me that this will be a dramatic surgery. It will dramatically change the way she looks.
I didn't think anything would change her look as much as that very first surgery, but then we had the lip revision in March of last year ... and she looked totally different the second time. I can only imagine what she will look like after this nose repair. I am just amazed that these surgeries can even be performed.
Now ... I mentioned the the little round white thing on MG's lip. Why??? Dr B didn't like the way it looks. She is going to revise the lip a little. Not much, but she is going to get rid of that little white bump and smooth the underside of the lip a little. It won't be a major thing, but will improve her lip once again.
Now ...the bad news. I'm not sure if I've posted this or not, but Dr. B will be leaving Arkansas Children's Hospital in July 2012. MG's surgery in April will be the last one that Dr. B performs (unless we decide to follow her to her new location). At this time, we have elected to stay at AR Children's Hospital. Dr. Larry Hartzell will take over our case. Dr. Hartzell has trained with Dr. Buckmiller for 7 years. He did his ENT residency and surgical fellowship side by side with Dr. Buckmiller. I am confident that Dr. B is leaving us in good hands. Dr. Hartzell has actually seen MG several times. He saw her at her very first appoitment before any repairs were ever done. He was in the OR during her palate repair. He knows MG's case.
There is a part of me that is very nervous about MG getting a new surgeon. I have small panic attacks sometimes, because I know what beautiful work Dr. B has done in the past. BUT, God has given me the peace of knowing that Dr. B has taught our new surgeon everything he knows. God has brought us this far in our journey ... he will NOT forsake us now.
I pray that Dr. Buckmiller finds a wonderful facility in which she can use her God given talent. I told her at our appointment that I understand the reasons she might be leaving ARCH. I also told her not to settle for a private practice where she could only place tubes and remove tonsils. I told her God has given her a talent, a passion for changing the lives of Cleft kids and kids with vascular anomalies, like hemangenomas, and it is her responsibility to use that talent well and continue to bless the lives of children with her gift.
So when is the next surgery scheduled??? Friday, April 6.
I'm getting nervous already !!!
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