Today Camielle went to see the Cranial Specialist. Shely said he was nice and talked to her about her head, jaws and said they wouldn't do anything to her till later when she is bigger. He also talked to her about her hands and the smile operation. Finally someone at Hershey who is knowledgeable. The therapist measure her for a walker. The poor thing only has an 8 inch inseam. She is just so damn cute. But I am a little parcel to her.

Shely took Camielle to the doctors. She weighs 13 lbs. She told Shely that Camielle did not have a UTI and take her off the antibiotics. They still don't know what is causing the high fevers but she is starting to take more at her feeds. Usually they tell you not to feed formula when babies are congested but because she lost weight they want her to stay on this high calorie formula. Shely said she is not as fussy and doesn't need to be suctioned as much. So hopefully when I get her when this baby comes she won't be sick at all. I hope.

Well I went down over the weekend to see G.G. She was not feeling well at all. Hershey said she has a UTI. I don't believe that was what the problem was. Any one who has had one know how painful they are and she did not even fuss a little when she urinated. She is congested and wheezing. It reminds me of the times her Uncle Nate would have an asthma attack. She did finally break her fever on Sunday night. I look at her and think of the thing we take for granted. When we have sinus drainage we just swallow or cough it up. She can't. When the back of her throat fills up she can't swallow she gags and she can't breath so she has to be suctioned and she hates that so much. Her throat is so raw from doing it and she fights it.

It broke my heart driving away and see that little girl waving good bye to me.

I pray all the time for her and most of all I thank the good Lord he has blessed me with an angel so precious as her.

Why????

Why is it when you think things are going great for Camielle then something goes wrong. She was doing really good with her feedings. The diarrhea and throwing up was gone. Now what? ? ?
Shely called from Hershey Medical Center this morning. They took Camielle in there with a fever of 105 the took samples of her urine and blood but everything came back negative. I was always told there has to be a reason for a baby to have a fever. I think there is so little know about Moebius Syndrome that they don't know what to do either. I don't know anymore. I just worry and that God that he has given me the Gift of G. G. and pray that everyday is a new step for her in this adventure we call life.

Grammy is getting excited. I get my Little G. G. for the weekend. And then in the next 4 weeks or so I will get you again as mommy and daddy wait for the arrival of Chloe. I love the time I spend with you and you can't imagine all the things I learn from you. Your eyes tell me alot. And my time with you is precious to me.
www.moebiussyndrome.com

Do you see it.

Smiles, smiles you do not see when you look at me. But remember looks can be deceiveing. My smile is invisible for those who don't know me.

God loved me enough to make me special. Smiling is no big deal. You see most people hide behind a smile. But deep inside they are sad and unhappy. So a smile you can see does not mean a thing.

But you see inside of me lies a smile only a few people can see. Being able to smile would make things easier, people would quit staring or turning away when they don't get that facial reaction. But it is those people who will make me a stronger person as I get older.

Just remember smiling is just a reaction. And for those who know me they don't need a physical movement to know what I am feeling. For they are as special as I am.

I could write about this little doll everyday. When I get my news letter from the Moebius syndrome Foundation I am sometime excited to see teens and adults who lead a normal life. But there are times that you see a child around 3yrs or 6yrs old that had died. And it scares me. When I look in to that blank face and I wonder what she is thinking. I will tell you she is a red head with that red head temper. If she is mad at you, you don't have to see any facial movement you just know looking in her eyes. She had to go into Hershey Medical Center yesterday for blood work. We thought that the diahreaa was caused by her formula not it wasn't and it is back so they are checking for bacteria in her blood to see it that might be causing is. She has alot of leakage around her feeding sight. And we wonder if that might be a problem. If there is an infection you would think that might be part of the problem. But the doctors act as though our concern are nothing. Oh well. I just know that the good Lord is watching over my G.G. And that she will grow up to be strong in many ways. www.moebiussyndrome.com

Shely called me G.G. had her follow-up doctors appointment yesterday. She is now 13lbs. So she has gained a little from the time she was in Hershey Medical Center.

And Shely had her doctors appointment. You see G.G. will soon be a big sister. Shely has been watched carefully and had many sonograms during this pregnancy. Just to make sure everything is ok. She had a picture perfect pregnancy with Camielle. I still remember the day she was born. When she arrived you could tell her cry was not like any babies I ever heard and she had no facial expression. Her hand was deformed and the other hand only had one joint on each finger and her index finger on that hand didn't bend at all.

When we were told she had Moebius Syndrom my first thought was how will people treat her. Most people will come up and try to get her to smile. Which is normal, when you explain to them she doesn't smile you get mixed reactions. One time Shely and I went for pizza we were sitting by a couple and a gentlemen was sitting behind Shely. Camielle was looking at the couple and the lady said she look like a baby doll but she stares alot. The gentlemen said he was just waiting for her to blink. When we said she didn't blink the couple got up and left and the gentlemen never looked our way again. Oh well I guess the unknown bothers them.

And I wonder a lot how kids will treat her in school when she gets older. I wonder if she will ever walk. Oh get me started on that. Her physical therapist is trying to get a special walk to us to try and get her to us her legs. They have on used for all they therapist. That just not right. I would like to buy one and when Camielle is done with it I am going to donate it. But when I looked them up on line they were over $600. Ouch.

My little G.G. is 1yr and 6mths old. She weighs 15 lbs and is around 23 inches long. She is feed by a feeding tube because she can not swallow. She has had diarrhea since Thanksgiving and has been in and out of Hershey Medical Center. They finally changed her formula and it made a big difference. She also had bad cold which is had for her. She has to be suctioned so she can breath. When she has drainage from her sinus she can not swallow or cough to get rid of it. She has physical and occupational therapy once a week. It does seem to be helping her alot.

My little G.G.

Camielle is my "Grammy Girl" that is why I call her G.G. Camielle was born with Moebius Syndrome. For thos who do not know what that is.

Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.


*Lack of facial expression; inability to smile
*Feeding, swallowing and choking problems
*Keeping head back to swallow
*Eye sensitivity due to inability to squint
*Motor delays due to upper body weakness
*Absence of lateral eye movement
*Absence of blinking
Strabismus (crossed eyes)
*Drooling
*High palate
*Short or deformed tongue
*Limited movement of tongue
Submucous cleft palate
*Dental problems
Hearing impairment
*Articulation / speech disorders
*Minor mid-line anomalies
Club feet
*Hand/feet deformities
* marks Camielles anomalies

Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms.

You Can read more on Moebius Syndrome @ www.moebiussyndrome.com