2 doctors visits, 1 resturant, 1 post office and a presentation

Pediatrician:

• Jillian is still not walking independently or has a vocabulary of any words. She does pull up on furniture and "walks" the furniture, however she has been doing that since mid fall. Jillian babbles a lot however she does not have any sounds that she says to represent anything. Because of those two things she is being referred back to Birth to 3. I sent and email to get that ball rolling.
• Back in late November Jillian was in the ER and they had a hard time cathing her because the opening was fusing together. Well it is fusing together again so they opened it up again (she SCREAMED) so we need to put estrogen cream on it for a few weeks. That is so much fun! Jillian is now trying to put her diaper on herself, lol! 
• Her ped wants us to visit genetics again. She wants her tested for a mitochondrial disorder. We were suppose to follow up with genetics in the summer however her dr would like her seen sooner. 
• We figured out what shots we were going to do in what order. Because Jillian gets sick when she gets shots we have to decide what shots a most needed. We were going to do the MMR shot however as the dr and I talked she referenced that MMR is the controversial shot. Having worked as an autism therapist I have heard of the MMR vaccine. She brought up a more recent study that showed that kids that tend to have adverse reactions to that shot had an underlying undiagnosed condition before they got the shot. We decided that for now we will hold off on that shot until we know more of what is going on. Jillian got a different vaccine yesterday and will get another one in 6 weeks. 

GI:

• Have I mentioned before that I LOVE our GI nurse! She is amazing! 
• Jillian's tube is still twisting when it should not be. We are going to just keep taping it. That is an easy fix. If we need a more complex solution at some point we will look at that but for now tape works
• Her weight is up from when she was in the hospital. We are thinking the bump in calories is working. We are going to keep her on regular Elecare for now. 
• Jillian's test came back that she refluxed a lot. They want to repeat the test to validate the results. Now we wait to hear when that will be. She will be in the hospital for 2 days again. 
• They diagnosed her with dysphagia
• I brought up the fact that Jillian has not been sleeping great on her new med and that her drainage is up from going off the Erytho. The doctor said the sleeping is a side effect and that the fact that her drainage is up was a good observation on my part. We are not doing anything about it for now. We will see if we continue to think it is a good med for her. Right now I am not positive that the side effects are worth it to me to keep her on a med that I am not seeing much good in.

Post office:

• I have been visiting post offices more lately mailing Tubie Friends! I am loving doing this! 

Presentation:

•  I got to do a sensory presentation for a group of teachers in Kenosha. Jillian came with me and a super cute!
• Once we were done there we drove home and had dinner with Jaime and Jason.