Jude had blood work done yesterday. It will take about two weeks to get the tests back to see what his seizure medication levels are and if we need to adjust them. He is having a lot more absence seizures so there has to be something going on. He has also been very "spastic" which means he jerks and turns his head back a lot. Other than that he has been a very happy boy lately. We did decide to keep him from going back to school and have inquired about home bound schooling. He will still get therapy 3 times on Mondays and 3 times on Fridays so he is getting plenty of interaction.
So I have a favor to ask. Emily has decided to compete for Miss Dallas Teen 2013. This will be a stepping stone to try to go back and compete in November at Miss Texas Teen again. However, just the honor of being Miss Dallas Teen would be amazing for her. She has set up a website and if she receives the most likes by 3/10 she will receive a free entry. This would truly help her financially. If you could like the page and share it with your friends that would be wonderful.
She also has an Emily's Smile Box party this weekend in Southlake. If you are interested in attending and helping us make boxes please email me for more information. As usual we appreciate everyone's support and donations to her cause.
Jude is doing pretty well. He is still having some issues with his lungs in the morning, but once he has his neb treatment he seems to be okay. He is also having a large increase in absence seizures so Mike is taking him to have his blood drawn on Saturday. The blood results will then be sent to his neurologist who will decide if they need to increase his medication.
Jude has been super happy lately!!! He lights up when I get home and start talking to him. He has still not gone back to school and we are checking into home bound schooling. Overall he is doing very well at home. He has therapy three times on Mondays and three times on Fridays. The nurse works with him the other days and we work with him too. I read him "Mrs Spiders Tea Party" last night, but he didn't seem to like it as much as "Goodnight Zoo." However it's one of my favorites so I am hoping he will end up liking it.
I have been busy with work and home. It is a bit slow at work so if anyone would like quotes on auto, home, life, etc please let me know. I prefer to keep myself as busy as possible during the day. Emily is doing well and is getting ready to go to high school. I am astonished my little girl is about to be a freshman. I really hope she has a great high school experience and remains as responsible as she is right now in regards to her social life and her grades.
I received another email from a mom who received a similar diagnosis as Jude did when he was 3 months old. I felt sorry for her. To her Jude's situation is the worst case scenario and she is convinced her baby will be fine. To me I feel so lucky. I have an adorable little boy he smiles, knows me, and who is always happy. He is my little blessing.
I haven't really mentioned it because it sounds so repetitive, but Jude is having a few issues again. A few days ago I noticed Jude was running a low grade fever. He also sounded a little raspy again, but he was smiling and happy. Yesterday Charlotte mentioned Jude's left lung was sounded a bit "junky". So today prior to leaving I went to check on Jude before I left while he was getting his breathing treatment. I noticed his pulse ox was at 96 and his respiratory rate was at 130, not that bad but not great either. Charlotte said she was still hearing "Junk" in his left lung. So now the question is do we just wait........or do we have it checked out. He seems to be happy, but not tolerating therapy. I think we will most likely just continue the breathing treatments and watch him carefully.
So yesterday I was talking to someone about a situation they were dealing with. I told her that during my experience with Jude I have learned I don't want people to feel sorry for me but I do want people to use common sense and treat me with respect. I thought I would share that because I think everyone should feel that way in life.
Next I want to share Jude's progress. I am just so proud of him! Even though he has these lung issues he has come such a long way................we as a family have come such a long way! The first video I want to share is the one that is so very hard to watch. So DON'T watch it if you are sensitive. It's of when Jude when he first started having seizures. They were so hard on him. He was on phenobarbital here, but it didn't phase his seizures at all. We were SO lucky to find Dr Riela who pursued medications until he found one that worked.
The next video shows Jude laughing 1 year ago at Emily making noises. Such progress!
and finally the current dated video I shared before showing Jude working on his head control.
