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Ciara was born on May 13, 2003. She had a perfectly normal delivery, and was a very healthy little girl at birth. We never noticed that her head tilted to one side. I assumed that was normal because newborns cannot hold their heads up.
Ciara smiled, laughed, and cooed right on time. She even rolled over once at 11wks, making us think she would be ahead in gross motor skills.
At 4 months, I noticed that her head was still tilted to the left, with her head always resting on her right shoulder.It looked a great deal like torticollis. I was sure this is what my little girl had. I talked to her pediatrician, and he seemed a bit lost on the subject.(first sign that he wasn't a good doctor for my daughter). He referred her to an orthopedic surgeon who confirmed that she did indeed have torticollis. The specialist told me to continue the stretching exercises that I was doing, and it would clear up. I found out later that I was not stretching her hard enough and she still had torticollis at 10 months of age.
Then, when Ciara was 6 months old I noticed she was lagging far behind her peers in gross motor skills. She was unable to roll over consistently, sit unsupported, support any weight on her legs, or hold her head up for long periods. She seemed hypotonic. I mentioned it to her pediatrician, once again, he dismissed my concerns. He told me that he would not worry about not sitting until 9-12 months. That sounded like it was far too long to wait. I took the initiative and called Early Intervention.
Ciara started physical therapy at 9 months and has been doing it for about a month. So far, she seems to be getting a little bit of strength in her muscles but is still unable to sit, roll consistently, push up while on her tummy, support much weight on her legs, or hold her head up for long. She will also have to undergo an MRI next month in hopes that we can find a cause for the hypotonia. If not she may have to have blood tests and possibly a muscle biopsy.
That is her story thus far and I will keep this page updated as she progresses.
UPDATE (4/29/04) Ciara is rolling both ways consistently, and has been doing so for the past week. She seems quite proud of herself! We are very happy to see her upper body strength improving :).
5/13/04 CIARA TURNED ONE!!! Click the link below for birthday pics!
Below are updates of Ciara's progress. I'll post when significant things are happening in her life, as we discover new things, and when she does something new (and as I have time!).
UPDATE (5/26/04) Ciara saw the neurologist on May 6th, and she is being sent for two full days of testing at Geisinger medical center. We're still waiting to be scheduled. She will also be starting Speech Therapy this week and occupational therapy in a little over two weeks. She will then be having therapy 3 times a week.
Ciara is clapping her hands both when asked to and when she hears music!! She also is starting to pivot to reach for toys.
UPDATE (6/24/04) Ciara's testing day and how it went:
Ciara was such a good girl for her testing today. She was very patient this morning even though we had to wait an extra 2.5 hrs for her MRI. That meant an extra 2.5 hrs that she couldn't eat or drink. She looked like a little peach in her fuzzy hospital gown (baby gowns are adorable). She didn't even cry when the nurse took her away to sedate her and do the MRI.
Unfortunately,Chris and I were not allowed to be in the room when she was sedated or had the MRI. We used that time to go to the hospital cafe and have breakfast.
I must admit, I got teary eyed as I handed her to the nurse and when they wheeled her out still sleeping. She napped in recovery for 45 minutes while hooked up to an IV. When she awoke she just started to examine her IV and didn't cry one bit. She drank 12 ozs of juice which meant she could have the IV taken out right away.
After that, we had to go to the lab to have a sweat chloride test done. I don't know any other baby that would be as compliant with this test as she was. She had to have little bands that looked like watches wrapped around each arm. This was then covered with a semi heavy heat pack and wrapped with a thick piece of material, She couldn't move her arms. These were worn for 30 minutes.
Finally, at 2pm we got into the EEG room. She did complain when the lady was scrubbing her head to remove any oils. She also didn't like holding still to have the many many wires placed. Ciara was easily appeased by the television being turned on. She watched television until we determined she wouldn't go to sleep. The lady flashed the strobe and Ciara didn't seem to react.
We should know the results in about a week or so.
UPDATE (7/12/04)Ciara's tests all came back clear :) We don't know the cause of her hypotonia but we'll work towards making her stronger.
UPDATE (10/5/04) Ciara is sitting well now. She can sit for up to 7 minutes at a time! She averages around 4 minutes. She still has therapy 3 days a week (OT, ST, and PT). So far, she enjoys all but the PT :) Which is probably because she really has to work for PT!
She's also making progress with her fine motor skills. She has been using the pincer grasp more proficiently.We're still working on self feeding, which, I expect to take a few more months to master. She seems to have an aversion to sticking things into her mouth. She doesn't mind liking things, but biting them is a different story. She'd much rather have mommy feed her with a spoon.She can eat food with lumps, but she chokes on crunchy foods.
(UPDATE 4/8/05) Ciara is now rocking on all fours. She is doing much better with standing with support. She is also much more social, and making eye contact regularly. She babbles quite a bit and wants attention most of the time.
(UPDATE 7/22/2005) Ciara became a big sister 4 days ago!! Her baby brother, Grant Alexander was born on 7-18-2005 Click here for his site
(UPDATE 8/23/2005) Ciara can now stand for a few seconds with the therapist holding on to her hips. She is also doing much more self feeding, and is completely off of baby food. I do feed her some meals with a spoon, but she can eat pasta and crackers on her own.!
(UPDATE 5-12-06)
It's been a while since the last update. Ciara had two firsts today.
This morning, while taking her bath, she took three "steps" on all fours in the tub. It was the first time she had gotten beyond one. She would have gone further if the tub was a bit longer ;)
Today was also Ciara's first day of school. She started in an IU20 program for children with special needs. She did well until PT, at which point, she did have a meltdown. We also learned about being very upfront with her needs and limitations.
Tomorrow is Ciara's third birthday. It means a new beginning in the new program,as well as a sad end to her time in the EI program. Ciara was very fortunate to have some of the most loving and capable therapists. I can only hope her new beginning is as bright.
I will be posting a link soon with an updated version of her story (chapter 2, I suppose). It will give more details as to her current progress, and what we're doing with her.
UPDATE 12 -16-06
Ciara had her first (hopefully only)obvious seizure tonight. She was lying on the floor, when she started shaking in a much different manner than her tremors. It only lasted a few seconds, but it scared mommy and daddy quite a bit. She was a bit grumpy afterward , but returned to her normal, self after a bit.We're watching her very closely for any other signs of seizures. We've had several "questionable" moments before this, but weren't sure.
She has also lost her pincer grasp, and the ability to self feed well, despite more therapy. She has also lost the few words she has.
She's a happy little girl, but can become incredibly frustrated. She incessantly "claps" her hands, or runs her hand down her face (like wiping). She has also started throwing herself backwards, or just losing her balance. We put her on a futon mattress on the floor now, instead of just her blanket. It softens things quite a bit when she falls backwards.
She is also having trouble holding things, and won't take toys. She'll still pivot to look at them, but she just smiles at them (and our Christmas tree!), while she folds her hands together.
UPDATE 12-23-06
Ciara will be undergoing a blood test to check for a MECP2 mutation, which would be indicative of Rett Syndrome. It seems her symptoms (hand clasping/clapping, seizure,tooth grinding, loss of skills, smaller feet, etc)point in this direction. We'll also be seeing a specialist in the New Year. I'll post about that as well.
UPDATE 6-5-2009
Ciara did test positive for Rett Syndrome. We have changed doctors a few times, and have finally found the right neurologist for her at Geisinger.
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Information links:
Rett Syndrome:
International Rett Syndrome Association
Torticollis:
Hypotonia:
