It's been a while

My little pony girl. She is maturing in her looks. Growing???? No so much
her 8 month old sister is bigger then her just by a little. They are looking at
a type of dawfism called Russell Silvers Syndrom. This is in addition to the
Moebius Syndrom. She has started to swallow a little so she can eat baby
snacks that dissolve quickly. But at times she will not allow you to feed her
(she is still tube feed) And she will go a day with only eating 4oz. And it
scares me. The doctors tell Shely when she is hungry she will eat. But I
have notice a weight loss in her. I can only hope and pray for her and
hope these doctors know what they are talking about.

Today Shely and the girls are heading to CHOPs for come tests. Well Camielle is starting to move fast. She is starting to vocialize more, stand and I think a lot has to do with having that little sister. I think she wants to stay ahead of her. Halloween is coming soon and the girl have their costums and they look cute.

Well Camielle is heading back to C.H.O.P. Her softspot on her head has no shrank any. And she has not grown in the last 3mths. So they are going to check her for hormonal Dwarfism and a few other things. Other then that I have seen her grow in other ways. She may not be able to walk but she can scoot her butt around and get were she is going fast. Monday she turned 2yrs old and I thank God for such a beautiful and prescious gem he has give me.

The weekend with my G.G. was hard. She is teething and nobody in the house got any sleep. She sleep at the most a total of 25min. I hate times like that when you are help less to help her. Because she can't swallow well she had to be suctioned because she was choking. And when you turn that machine the hand comes up and the starts signing enough even before you get started. It make me sad. But on the other hand I saw alot of improvement in her. And how she can get to point "a" to point "b" with little struggle. And when she learns to walk I don't think there will be any stopping her. Shely found clumps of hair. Not sure if she is pulling it out or if it is falling out. Its these small things that worry me. But God has blessed me with this angle of a grand daughter. And she has open my eyes to alot of thing every moment with her is a learning experience.

I haven't blogged in a little while. And so much is happening. Camielle is scooting around to get room to room. She will roll around it something is close that she wants. The only problem with that she is braking her button (for feeding tube). And they will only send a new one every month. I guess they don't take these kind of thing in consideration. She is also trying to stand up on her own. Shely said when I talk to Camielle on the phone and teller her "I Love You" she signs it. She is growing to be a big girl. Hopefully she will be waking by her 2nd birthday(in 2 months). I am just so happy to see her progress. I know she will have alot of road block and I know she will be a stronger person for this.

Mothers Day

Charlie, Shely, Camielle & Chloe came to see me for the weekend. What a great Mothers Day gift. Well no not really the real gift was a picture Shely showed me from Camielles physical therapy. It was a picture of Camielle Standing up. What a milestone.

Shely called the other day. She was telling me that Camielle was having this episodes of of shaking. Chloe was due for her 6wk check-up so I told her to say something to the doctor. They checked her out and have scheduled her for a EEG to check her brain waves. Then I talked to her today she had 2 episodes today. I hope this is nothing to worry about. I hate being away from them. I just wish I could move them all up here. To be close would not change things just give me some what of a peace of mind. And I could help Shely out with the kids. She really doesn't have that down there. She does have a friend who does help babysit when she needs it. But she can't do it all the time. I do miss my girls all three of them. Sometime I feel usless. I shoult be there.

What do you see?

When I look at her I see a big smile. But I wonder what you see? And it makes me sad to know you can't see what I see. The Lord has given us something to special that a person who is shallow can not see. Because you have to look beyond the obvious to see her smile and beauty.

How I miss my G.G.

My little G.G. got her glasses today. Shely said she has done a great job of keeping them on. So she must of really needed them and realized how well she could see. Now she really looks like her grammy. Okay not quite but I can dream.

She loves her new baby. But they are so diffrent. And in ways this Moebius Syndrom made Camielle an easy to care for baby. Where Chloe has a loud baby cry. Camielle didn't. Camielle was hooked up to a feeding machine almost continually and there were no every the hour feedings. And she was in the Hospital the first 5 weeks of her life. So it has become a challenge for Shely. And Camielle is starting to show her terrible 2 early. Shely called me the other night as my little baby doll was throwing a fit. Because Shely was eating supper and Camielle want something to eat. She didn't want the feeding tube she wanted real food and she wanted it THEN AND NOW! Shely gave her a spoon and a little baby food. No that was not what she wanted. I wonder if she notices Chloe is taking a bottle like mommy and daddy take food and she want to be like them. I always wonder how her brain works. Sometimes you look at her and you see that mask that God has given her and you for get that behind that mask is a child whose brain is taking in everything and thinking about ways to accomplish things. She is so funny at times. Well her new thing is she has to have glasses. I know that is a fight waiting to happen. At least for a while till she realizes she can see better. I worry about her when Shely goes to work. They are on a tight income now and a special babysitter for her is expensive I just hope that God bless them with some kind of help. Either that Shely won't have to go back to work or a blessing of a person who wont charge her an arm and leg to take care of the girls. I really have living away from my 3 girls. Sometime I feel that I have abandon Shely when she needed me most.

Happy Easter to my 2 little bunnies. Chloe is 10 days old and Camielle is handling being a big sister very well. It's mommy I worry about. I wish that I was closer to her to help. Because I know that she needs help with both. Both of them need feed every 3 hours (G.G.'s last feeding is 8pm) and Camielle is still not walking so it is like having like twins. One just a little bigger than the other. And I know my daughter she will not ask for help. The feeding during the night I am sure is rough for her. She didn't have this with Camielle. She was on a feeder. So she had to get up only once and that was around 5 in the morning to fill her feeder. I just hope she comes up with a schedule that will make sure she is getting enough rest. I would take my G.G. for a few days except she need her physical and occupational therapy. Yes I worry about my 3 girls. My baby girl and her girls. I pray for strength and good health for all. I really hate that I can't be there to help. I feel that is my job as a mother and grandmother. Am I failing?

Camielle became a big sister on April 2, 2009.

I was worried how she would handle this new addition. I thought she would be jealous and not want anything to do with her. Surprise! She thinks her new sister is just great. She wants to give her loving all the time. She just sits and stares at her at times.

I had Camielle for a few days while mom was waiting for Chloe to arrive. She is so funny. She has picked up some sign language up and she uses. But when she says no you hear that very well in her voice. And she is learning how she can move to get in different positions. It just amazes me at time how she is adapting for her disabilities.

When I first held Chloe I was just in awwh with how she looked around and her facial movements. And then I realized how Camielle has taught us to appreciate the small things that most parents and grandparents take for granted. It is these things that let me know why God has blessed me with a special granddaughter. And not to take the small things for granted.

Oh how great this week was. I went and got Camielle last Thursday. She was so good. I didn't get much sleep but not because she cried, but she would wake up in during the night and talk, talk, and talk then go to sleep for a little then wake up and talk more. She was so pleasant and nobody can say she has not personality. I tried to work with her and get her to stand up but she refuses to. Bull headed little red head she is. She would make me laugh so hard sometime. But she did really get mad at me the on time and yelled at me for about 10 min. I was hooking up her feeding tube and I dropped the syringe which had her formula in it and it spilled all over her. She was not happy with me at all. Then I loaded her up and took her down to meet her mommy. And as you can see in the pic they missed each other a whole lot. But I look forward to having her again. Even though there are time I sit and look at her and wonder what is this little girl thinking. I alway realize that that mask of hers really does hide alot.

Shely sent me some pictures of my Little G.G. She had got done feeding her and started to get her dressed and sat her up when I called her. We talked and when she turned around and look at Camielle she was sleeping. But she also woke up with her eyes pasted and a sinus infection. Camielle can not close her eyes completely when she sleeps. So in the morning you have to put drops in her eyes to clean them and lubricate them. But this morning they were really bad. She had 3 appointment on Monday. One was a orthopedic doctor who said that it looks like her thumb on her right hand is growing some bone. They didn't think it would but it is. The fingers on her left hand show some growth except for the thumb and index. He doesn't think the will grow at all.

I look at pictures of her and just think how much this Grandma wants to hold and giver her kiss. I just can't wait to see her again.

Shely called Tuesday and said she is almost 2 cmm dilated and 50% effaced. So Camielle will be a big sister soon.
She was also watching autism x6 lastnight on TLC she was upset. She said she saw Camielle in the little boy in this actions. I told her sometimes because Camielle has not facial movement it seems like she has a blank stare. And not to jump to conclusions. But it not like I haven't had those thoughts. I know how I feel and wonder about her, I just can't imagine what Shely goes through. All I can do is pray, and rely on God and that he makes her life as normal as possible. This thing they call Moebius is so foreign to me and all the things that go with it is many. I hope to see her go to kindergarden, graduate high school, get married. I dream of these things for my little G.G.

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