Eye doctor, Speech and life

Its had to believe that in less then a week my little girl turns 3! Its just crazy to me. We have a fun next few days planned and I am excited to celebrate with my little girl!

Last week we met a new doctor. The eye doctor at Children's. Jillian did a great job. There has been a little question for a bit about the possibility of her being color blind and the testing for that was inconclusive. The thing with color blindness is its something that will make itself known in time and there is nothing we can do about it if she is. She got to have her eyes dilated and she told me she was seeing crazy! She is such a goof! They said her eyes structurally look really good and they would see us in 2 years. Good news!

Last week we did not make it to therapy because I got sick on our way there (I sure heard about it all week from a little girl!) but we did end up dropping of her neuropsych report later in the week so they had that info to go on. On one speech test she scored in the 30th percentile but on the speech test that her therapy place also uses she scored in the 70th percentile. Best guess is that she sits someplace between the two but that is still a good place to sit. We are taking a 3 month break from speech therapy and seeing where she is in three months without services. The good thing is that with doing a break if in three months we decide she is still needing speech we dont have to do a re-eval, we can just restart services. We will still be at therapy weekly for PT anyhow so we are able to check in an keep tabs with her speech therapist. I think this will be a good chance for her to show us her stuff. She has come such a LONG way in the speech front and I am so proud of all of her hard work!

Last week we also got in the mail some papers I have been trying to get my hands on for a while. When they did Jillian's muscle biopsy they sent pieces of her muscle out to two different labs for testing. In the Children's official report it references those reports but it does not include those reports. I wanted to see the reports from the labs myself. I am glad I did because low and behold one of the values is off on something and the Children's report makes no mention of it. We don't completely know what this value being off definitely means but after talking with therapists and others we have an idea. We will be taking these papers with us when we go to Madison in January and are hopeful that is the missing piece we were needing in figuring out the Jillian puzzle. Right now we are hopeful that we are one step closer to a diagnosis. We are kind of frustrated right now that Milwaukee genetics did not catch this nor did they tell us about it or know anything about it but I am trying to remind myself that there is a reason for the timing and maybe it is someone in Madison that we need to be seeing for the official diagnosis.

Otherwise around here right now we are in full swing for Christmas. The tree is up and most of the gifts are wrapped. Jillian is great about not touching in the tree or the gifts under it. The past two years the tree has been in a baby gate but this year she has been a big girl and we have not needed to do that. Next year we will have a 6mo old at Christmas time so I think this is probably a one year break from the gate. Jillian and I are enjoying watching Christmas movies and she loves singing Jingle Bells. She has also been very into play board games and playing princesses. She has been so great with me being sick. I am so blessed! If I get sick she will come up to me afterwords with hugs and ask me if I am feeling better. Her doctor kit has been getting a lot of use on mommy lately and she is so sweet giving me check ups. She got to come with me on Monday to the OB because last Thursday they could not find the baby's heart beat so they had me come in first thing Monday for an ultrasound where we got to see the baby jumping around and moving great. For my first ultrasound she was super interested, for this one the iPad was most interesting but she wanted to know why the doctor was putting goo on my belly. Thankfully my OB was very good with her. We have also started her on her new meds from GI. We will see if they help!    

She was explaining to her baby Jesus that he came out of Mary's tummy!

She thought her Roo needed a diaper instead of her!

She wanted to have drawing time the other night. She told daddy he needed to draw the little mermaid, lol!

She was waiting at the window last night for he Jaime and Jason. She was afraid they were not coming. It was rather cute. She loves her JaimeJason (that is how she says their name, its just one word)