It's been a very long, hard, yet still enjoyable journey to get to this point. Yet, I'm frustrated.

In the past month I have been told my our Neurologist and also an eye doctor that my daughter Camdyn has unique facial features that look like she could have a possible syndrome but they still don't know what.

To give you a little background... ( I apologize, my thoughts aren't very organized!)
I had a perfect pregnancy, easiest labor ever ( I was literally laughing and cracking jokes) and had a beautiful baby girl. They noticed at birth she was very limp and had very low tone but after just a few days it got better so they didn't seem worried. From when she first started breast feeding she never ate very much, in fact the first couple of nights at home she was lethargic and we had to try everything to get her to wake up enough to eat. I pumped my heart out while bawling many times because she didn't want to eat. I had so much trouble keeping my supply up since she was so inconsistent. waking her every two hours at night until she was a little over 4 months, even though she would sleep through the night, but that was the bad thing. She never was hungry so I just had to stick to my schedule. She was 6 lbs 5 oz when she was born. She lost weight right away and by the time the two weeks went by she still hadn't reached her birth weight. Ever since she was about 2 months old she has consistently been right under the 3rd percentile for her weight.

At 4 months the pediatrician diagnosed her with low muscle tone and we started physical therapy right away. Being my first baby I didn't realize she wasn't nearly as strong as other babies her own age. Thank goodness we did physical therapy, she wouldn't be where she is today without it. When we started PT she couldn't hold her head up and she wouldn't do tummy time. Over the next month we improved and we started going more frequently, started monthly, then every other week, then weekly, now we are back to monthly.

As far as her eating goes, she had such a poor shallow latch, we started going to Speech Therapy at about 6 months I believe. We had just stopped breast feeding because it was just miserable for me and I couldn't do it anymore. She of course hated the formula and we tried a few different kinds, I tried 6 different bottles and she just was not a good eater. (To this day, she has never drank more than 20 oz in a day :()The Speech therapist helped me do things to strengthen my daughters poor latch (at the time she was leaking out both sides of her mouth when she drank) and also gave me different things positions and things to try at home. I started giving her solids and she loved them (thank goodness!)

I gave her solids until she was about 9 months old and we ended up going to see a dietician. She helped up with different meal ideas as long as a schedule I need to giver her bottles and solids right after another every 2.5 hours. But not baby food, I strictly had to make her meals and grind them small enough for her to eat. The dietician wanted her to have very calorie dense meals. We did that for about a month and then she was eating cut up table foods and she has ever since. Her Speech therapist is very happy with how well she improved with her eating in just a few weeks and she is her little rock star now she says

While all of this was going on at her check ups she was always just a month or so behind on her milestones, not all but some. guess when babies have low muscle tone, in most cases it goes along with some other medical problem. We ended up doing a microarray genetic test to see if there was anything wrong with her. The test came back normal but our pediatrician sent us to see a neurologist anyway. When we got there and they asked us why we were there we didn't even know why. The neurologist looked at her and decided to run a few blood tests on something she thought she could have but the tests came back normal. She then thought she could have Williams Syndrome but the genetic test we had had already ruled that out. Three months went by and we just recently went back. She was very happy with how much my daughter had progressed. She told us she still want to do an MRI to rule that out, even though she doubts it will come back with anything. She also referred us to see a genetics doctor.

My daughters low muscle tone is getting better, she has done absolutely amazing. She is currently 13 months old and although she isn't walking yet, she is cruising around all of the furniture! She recently had to get special orthotics made because her feet were too small for any shoes with hard soles and she desperately needed the ankle support. Since she got those just a few weeks ago I can already see a big improvement! She is the most happy little baby I know and she is such an inspiration to me.

So after all of that random info...lol
I'm still frustrated at the doctors! I feel like this has been going on forever and I'm tired of the...well she had unique facial features that could possibly be a syndrome.. Well then WHAT IS IT? There have been so many things they have thought she could have and ended up not. So now my husband tells me not to worry until/if there is something to actually worry about. Regardless if she ends up having a syndrome or not my husband and I won't ever love her any less or treat her any different. She is the best thing that has ever happened to us and we wouldn't change a thing. She is AMAZING! We love her more than we thought we could ever love anything.

Their biggest concerns:
Low Muscle Tone
She's so tiny (I was too though!)
Her eyes are pointed down and she has a low nasal bridge

Any ideas?

I think this is more of a vent then anything, thanks for listening

Here is my beautiful baby girl