Yesterday was Cerebral Palsy awareness day. Today is Epilepsy awareness day. May 1st is Pediatric Stroke awareness day. Sometimes I feel overwhelmed by the awareness of it all. Laced with ribbons, colors, media, and bumper stickers. It seems there is a color and an awareness for everyday of the year and Jude fits in a lot of them.
I get it though.........I really do. The need to create awareness and education for the rest of the masses that have no clue how hard our child's daily struggles are. To help prevent this from happening in the future and maybe finding a cure at some point. When you find a purpose for yourself and your child the disease or affliction can take a positive turn. When you find others in your situation the vast loneliness of it all eases somewhat. It's a positive way of spreading information about a negative affliction.
I will just be wearing a rainbow of ribbons.
I will leave you with a sweet picture of Mike and Jude I took last night. He sure loves his daddy!
Jude's neurologist called today to give us an update on Jude's bloodwork and his findings on the MRI. The MRI was really for the doctor's benefit so he can better assess how to treat Jude. He said that Jude's brain showed a lot of white matter damage which indicates a massive traumatic injury which leads him to believe the diagnosis of an intrauterine stroke was accurate. Even after all these years when I heard that I let out a sigh. I know Jude's disabilities are not my fault, but as a mother I continue to question what I did wrong. I always wonder if there is anything I could have done differently. The doctor said whether at birth or in utero Jude DID have a massive stroke. We know from Dr Twickler (MRI) that it was in utero. The doctor didn't mention anything in regards to the brain surgery he had mentioned before. I am not sure if this is because he didn't see a need within the pictures the MRI supplied or the fact he knows we would say no.
The doctor increased Jude's seizure medications at night. He said that Jude not sleeping well combined with the nurse possibly seeing a seizure leads him to believe there has been something festering for awhile. He said seeing a seizure can be the end to a beginning. I never thought of it that way before. Therefore, we are going to see how increased seizure medication helps control Jude's recent issues.
Jude's red blood cell count was a little low. We are going to have this retested in April to see if this is just jude's norm or something we should watch. At the end of April we will be taking Jude to have his botox and they will be doing a spinal on him. Therefore, they will be putting him to sleep again...ugh. So I have taken two days off work to get this completed. Emily will also be competing in Miss Dallas Teen that weekend so therefore my family will be in town. I think it will be nice to have them here for both of the kids that week.
I am at a bit of a loss again with Jude. He slept HORRIBLE last night. He probably got good sleep between 2-5:30. Then today Charlotte said Jude had a seizure :(. This is new. Jude has a lot of startles that look like seizures to most people, but we don't count those.
Now tonight when I got home he just wants to be held again. He is very toned out when I hold him, but it makes him feel comforted. If I put him down he gets very upset.
Watching for signs of an infection or something. Maybe he is outgrowing his meds? Maybe it's his legs?
It's a real guessing game this time.
Jude has not been himself for about a week. Last night he started really complaining and seemed to be very uncomfortable. We eventually gave him Valium and that seemed to help some. I was a little late to work today because I had little sleep last night. We had already taken Jude to the doctor and his lungs, ears, sinuses, etc all checked out so now we were going down our other list. Since Jude had appointment planned with the doctor that adminsters his Botox today we decided to ask that doctor what he thought. It very well could be Jude's legs and tone giving him issues again. So we are back to wondering what we do about his legs. We can do the surgery, but it's something I would rather avoid. It's just invasive and I think it invites issues in. We can try Botox again but it only lasts for three months and eventually insurance will probably give us a hard time due to cost. The new opton is to put in a device that delivers medication directly into Jude's spine thus helping with his bottom torso.
I don't like this option either. Again it's surgery and as you can tell that's a very large device. It's bulky and it's a hard surgery the doctor said. The doctor also said that by looking at the X rays he belives the ball in Jude's hip socket didn't develop. He is guessing since he isn't a hip doctor, but due to the fact Jude never put weight on his legs it caused problems from the start.
So could it be Jude's legs causing him issues again? Probably. However, tonight he is thankfully very happy. So let's hope he sleeps.
My house is still very dusty and grimy, but Jude officially has a shower! We are still lacking the glass and some other items, but I gave him a shower in there on Sunday. He LOVED it! He smiled and giggled.
Overall Jude has been very happy lately
However he was pretty congested yesterday. I finally gave him some Motrin last night and it seemed to settle him down some. I am sure the dust is giving him some issues. Hopefully he isn't catching anything. The nurse said he seems to be better today.
So we have some new neighbors and said neighbors have a dog. The dog likes to bark at 2 and 5........along with Jude getting up I am very frazzled. Mike is having to get up at 6 now and Jude woke up when he heard Mike this morning. I just laid there and after Mike left I could hear Jude going "Maaaaaaaaaaaaaaaaaaaaaa".................."Maaaaaaaaaaaaaaaaaaaaaaa". Very cute, but mom was tired! "Jude go back to sleep please!".
Jude got a new therapy mat from his aunt and grandmother. He is very excited about it as are we. I am still waiting on Jude's MRI results. I hope to have them soon.
