Its so nice to be a teacher and have the summers off. Not because I get to relax, but because I can get so much accomplished! We went on some vacations... Harper and I went to Charleston, South Carolina to visit Nicole, Morgan, and the newest Codell addition, Callaway. She is absolutely precious! Then Brian was able to go to NYC to see his sister, Sarah, and help her with her art show. Then at the end of July, Brian and I went to Honolulu to celebrate our 5 year wedding anniversary (even though it's August 30th, we had to plan a trip when I wasn't in school.) We had a blast and created so many memories and we are so blessed and grateful that we were able to take these trips. Harper also celebrated her 2nd birthday party. It was an anchors away theme. An Anchor is the symbol for HOPE and we have definitely had a lot of HOPE this year. It just seemed so fitting. Because we feel like we have so much to be grateful for, we asked all of our guests to bring in gifts for patients to Texas Children's hospital, instead of Harper. We received a lot of great things and it was a great feeling dropping them off at Texas Children's the following Monday after her birthday party.
I also used A LOT of my time this summer taking Harper to all of her follow up doctor appointments and working with her behavioral/occupational therapist and her physical therapist. Our medical journey this summer started by me taking Harper to Dr. Jody Caldwell, she is a biomedical doctor who looks at Harper's blood, urine, and stool (which I had to collect the urine and stool sample and send it in.) to see if she is deficient or lacking in anything in any way. She wanted me to continue Harper on the gluten free/ casein free diet, which has been great! Harper is a fantastic eater now and loves her proteins, veggies, and fruits. No more processed foods, all healthy! :) She wanted Harper to start taking cod liver oil, which is great for the brain, continue her DHA omegas, and additional multivitamin to the other one she is already taking. We should know in a couple of weeks her results to all of her tests.
Then we had her geneticist appointment. So remember a while back I said we received the genetic results and they came back normal. Well..... they did, but there were 4 genes that came up as red flags, so our Doctor had us do some more blood and urine samples (I know, poor Harper is always getting pricked and prodded.) We should know in a couple of weeks the results of those tests. It truly is such a waiting game... All we can do is pray and stay positive. The genetic doctor did say though that he thinks if Brian and I were to consider to have another child that we have a 1 in 4 chance that our next baby could be like Harper. He also did say that he did not think Harper was autistic, but to ask the neurologist his thoughts.
So a about a week later we had our next follow up appointment with Harper's neurologist. After waiting 2 1/2 hours we went and asked how much longer and they told us ANOTHER hour and a half. We left, because a toddler can only wait so long, and we rescheduled with a different neurologist for the following day. We went back the following day waited an hour and a half, but that's typical for a specialist. And we LOVED her new neurologist. He was great with Harper, and she really liked him. He was the first doctor for Harper not to cry when being "messed" with. He did a lot of tests with her and basically said we still don't have a diagnosis, but all we know is that her cerebellum is under developed, which is causing the lack of speech, and cognitive delay. He said he was actually pleased to see her walking, because with her brain underdeveloped like the way it is, she shouldn't be walking. We asked if he thought she was autistic and he said no. Harper is very social and loves being around others, and other than her lack of speech (which is caused by her brain being underdeveloped) that is her only quality of a typical autistic child.
He also said he does not want to do another MRI until she's about 4 years old, because of how dangerous it is to do an MRI for a child, but also, because he thinks all we will see is that it is still under developed, but it has developed.
Again, this is ALL a waiting game. We have a follow up appointment with Dr. Ian Butler (her neurologist) November 7th, and a follow up appointment with Dr. Probst (her geneticist) in a year, unless if the blood work and urine sample came back negative, then we will see him as soon as the results come back. Same with Dr. Caldwell, her metabolic doctor, depending on what the results say will determine when Harper's next appointment is.
Harper's 2 year check up was last week. We decided to not get her 2 year immunizations. We want to wait a while until we get some tests results back from her biomedical doctor to see if her immune system can handle them right now. Her pediatrician and nurse were VERY PLEASED by how much Harper has progressed! And that's all we can ask God for right now, is progression.
It has been a very busy summer, ending with Brian's 30th and my 30th this month! I'm sure I know what our birthday wishes are for the year! We truly are blessed and have so much to be thankful for and so many things to celebrate!
