Alaina's Mom
03-05-2008, 04:06 PM
Alaina is my beautiful little girl born on September 6, 2007. She is little sister to Reggie now almost 3 years old. Because of all our craziness with both pregnancies we are thinking that we are done. We have our boy and our girl and I don't think we could handle another pregnancy.
We went to Alaina's 2 month appointment in November and the doctor pointed out that her head was flattening in the back (Reggie's did too) and that one of her eyes seemed droopy or smaller than the other. I asked about the shape of her head as it didn't seem nice and round like her brother's had been and I wanted to know what we should do about it. We were told that we would just watch both the head and the eye and that it wasn't too much of a concern yet.
Well...I'm a mom and I'm sure you can relate...I couldn't stop staring at her eyes and her head. Finally in December I couldn't take it any longer. I really thought that one pupil was smaller than the other and her head shape really wasn't right. So, we went back to the Pedi. He said lets deal with one issue at a time and he sent us right away to the CT Children's Eye Care center and that Doctor told us that she had Horner Syndrome. This is not a cromosome thing but was damage to the optic nerve due to birth trauma or a tumor in the brain or spinal column. Of course when the optho told us this he was not very concerned at all and said, "It would be interesting to test her and see if it really is Horner Syndrome." So, he sent us to the Neuro-Opthomologist (one of 3 in CT and 500 in the country). Our appointment wasn't scheduled until February 4th.
I wasn't sure about all this and felt very badly that we weren't addressing her head issue so I took Alaina to the Chiropractor. She was wonderful and did some cranial sacral therapy on Alaina. It helped right away, but after the first week nothing happened.
Finally we saw the Neuro-optho on Feb. 4th and he put cocaine drops in her eyes to test for Horner's Syndrome. It turned out that she did have it, so we made an appointment for another test in which he would put some other drug in her eyes to see if the HS was caused by damage in her neck. Then, on a whim I mentioned that her head size was 10th percentile and he couldn't find her soft spot. He told us that he thought her cranial bones had fused and got us in to see the cranial/facial team at the CT Children's Medical Center in Hartford. I thought he was crazy...little did I know.
The next eye drop test didn't show any damage and so Alaina needed an MRI to rule out a tumor in her brain or neck. We had also seen the Neurologist in the Cranial/Facial clinic and he had scheduled a CT Scan. By a miracle from heaven we were able to get the two tests coordinate so Alaina only had to go under anesthisia once! It turned out there are no tumors, but she has a right coronal fusion and will need surgery.
Now the waiting begins. We still do not have a date for surgery, but are told that it will be sometime in May due to the amount of kids needing surgery right now. In May she will be 8 months.
I go back and forth between feeling numb and scared out of my mind. I don't want to lose my baby girl. I don't want her to go through this crazy and mind blowing proceedure, but at the same time I wish it was tomorrow! I'm sure this time will go by quickly and I have brought out the camera and camcorder to try and record as much as I can of her before we go to surgery. Hopefully we'll have lots to record after as well. God is in control and I know he'll see us through, but it is still scarey.
Part two will follow later. : )
We went to Alaina's 2 month appointment in November and the doctor pointed out that her head was flattening in the back (Reggie's did too) and that one of her eyes seemed droopy or smaller than the other. I asked about the shape of her head as it didn't seem nice and round like her brother's had been and I wanted to know what we should do about it. We were told that we would just watch both the head and the eye and that it wasn't too much of a concern yet.
Well...I'm a mom and I'm sure you can relate...I couldn't stop staring at her eyes and her head. Finally in December I couldn't take it any longer. I really thought that one pupil was smaller than the other and her head shape really wasn't right. So, we went back to the Pedi. He said lets deal with one issue at a time and he sent us right away to the CT Children's Eye Care center and that Doctor told us that she had Horner Syndrome. This is not a cromosome thing but was damage to the optic nerve due to birth trauma or a tumor in the brain or spinal column. Of course when the optho told us this he was not very concerned at all and said, "It would be interesting to test her and see if it really is Horner Syndrome." So, he sent us to the Neuro-Opthomologist (one of 3 in CT and 500 in the country). Our appointment wasn't scheduled until February 4th.
I wasn't sure about all this and felt very badly that we weren't addressing her head issue so I took Alaina to the Chiropractor. She was wonderful and did some cranial sacral therapy on Alaina. It helped right away, but after the first week nothing happened.
Finally we saw the Neuro-optho on Feb. 4th and he put cocaine drops in her eyes to test for Horner's Syndrome. It turned out that she did have it, so we made an appointment for another test in which he would put some other drug in her eyes to see if the HS was caused by damage in her neck. Then, on a whim I mentioned that her head size was 10th percentile and he couldn't find her soft spot. He told us that he thought her cranial bones had fused and got us in to see the cranial/facial team at the CT Children's Medical Center in Hartford. I thought he was crazy...little did I know.
The next eye drop test didn't show any damage and so Alaina needed an MRI to rule out a tumor in her brain or neck. We had also seen the Neurologist in the Cranial/Facial clinic and he had scheduled a CT Scan. By a miracle from heaven we were able to get the two tests coordinate so Alaina only had to go under anesthisia once! It turned out there are no tumors, but she has a right coronal fusion and will need surgery.
Now the waiting begins. We still do not have a date for surgery, but are told that it will be sometime in May due to the amount of kids needing surgery right now. In May she will be 8 months.
I go back and forth between feeling numb and scared out of my mind. I don't want to lose my baby girl. I don't want her to go through this crazy and mind blowing proceedure, but at the same time I wish it was tomorrow! I'm sure this time will go by quickly and I have brought out the camera and camcorder to try and record as much as I can of her before we go to surgery. Hopefully we'll have lots to record after as well. God is in control and I know he'll see us through, but it is still scarey.
Part two will follow later. : )