Monday, April 6, 2009

Monday Madness

Since I have walked in the door to work the phone has been non stop. I am currently on hold with my corporate office, so therefore I am able to multi task and blog during my wait. The good news is I woke up this morning to a very smiley baby laying in his bassinet. Jude had another night of full sleep. In fact, last night I fed him and then gave him his medication at nine thirty. He didn't act sleepy, but I wanted to start trying to get him into a regular routine. So I took him into my bedroom, and dimmed the lights. I then changed his diaper, and kept repeating, "Jude it's night night time". So I laid him down and he assumed his position, and started closing his eyes. I was so proud of him, and it reminded me of how Emily was as a baby. He went straight to sleep, and didn't wake up until this morning. These nights of being able to sleep are really refreshing Mike, and myself. I still wake up every morning at 3:30 am. I check on Jude, and then check on Emily, but I am able to go back to sleep until my alarm goes off. I think we had forgotten how much better you feel when you are able to get a good nights rest.

I am not sure if I mentioned our Easter egg hunt fiasco! My neighborhood held an annual Easter egg hunt. Emily put on a pretty white dress, fixed her hair, and really put time into making herself look good. We then gathered the kids Easter baskets, and took them to the big hunt. I know it's so difficult to put on a large hunt for so many people, and the poor women lost control. I would have suggested a microphone, and signs for age groups, but it was also so windy that day. Anyway, Emily helped Jude pick up four eggs from the baby section as shown here .... poor Jude is just hanging on.
Image and video hosting by TinyPic
Although, little to Emily's knowledge while she was helping Jude the big kids stormed the field and took all the eggs for her to hunt. They didn't wait as they had been told too. So she was a bit let down. I explained how difficult it is to organize a large group like that, and not to worry because we would have a hunt on Easter.
An upset Em:
Image and video hosting by TinyPic

So Mike went to Stephenville today to finish the touch ups on the large house he was working on. His mom has Jude, and will have him a lot more from now on. Once Jude stays in the nursing home overnight he will qualify for respid. Mike will be able to work a lot more, and this will help us catch up financially. Although Mike's mom is incredible she cannot see 100%, so I will be traveling at lunch today to give Jude his medications. Normally Mikes brother is there to assist her, but he went with Mike to expedite the process today. Tomorrow Mike will be going to check out a friends fence, and then we are off on vacation. As I stated the respid will be nice, but the journey to getting the respid has been difficult. I understand the case worker is doing the best job she can, but I think that sometimes in our fields we forget that not everyone knows our personal terminology. In the insurance industry I know few people will understand what "subrogation" means. therefore, I have to remember that I have to explain someone's policy to them in a way they can understand it. So I am hoping that she will eventually understand this. The other day I was told that Jude's hospital stay will not qualify for the nursing home because MDCP is a community program ?!?!?!? I get rather frustrated with trying to figure all of the programs, therapies, etc for Jude. I have heard from many other moms that they feel they were thrown to the lions, and I feel a bit of the same. I am thankful we have programs available in our country and states, but as I mentioned before it's a bit like reading the new tax laws when understanding it all.

I have been anticipating the premier of Tudors for weeks, and I finally got to watch it last night. Mike had made some kettle corn so I settled into the couch in high hopes of a great show. I wasn't disappointed, and loved every minute of it. I am enthralled by English history, but it also made me evaluate Jude's situation. What if Jude had been born during that time period? We all know that King Henry's only son Edward that he wanted to badly was very sickly, but he didn't have seizures. So if he beheaded a wife for not having a son, and almost killed his daughter Mary for not claiming him as head of the church, what would he do to JUDE? I shiver to think! Caesar was epileptic, but as far as we know he didn't have special needs. What happened to the children that needed assistance? Were they treated like the animals would treat them in the wild, and left to die? It's a subject to consider, what are your thoughts?

Anyway, I am thrilled with Jude's recent progress. His MRI may say Jude will never be normal, but we are so thankful for this time period we have with him! We can see so much in him. He even looks like he is trying to reach a bit.

An interested Jude:
Image and video hosting by TinyPic

A smiley Jude:
Image and video hosting by TinyPic

A baseball lovin Juders at Em's game:
Image and video hosting by TinyPic

4 comments:

andrea said...

Jude is getting so big!! he looks alot like your husband (no offense). Why does jude have to stay overnight at the nursing home to get assistance? i hope you don't mind me asking.

i think back then, the disabled were institutionalized and labeled "insane". there was shame and embarrasement if you had a special needs child and most times they were taken away quickly. could you imagine that? aaron back in those days probably would have eventually died and would have been labeled a freak and grotesque.

Cjengo said...

Good question Andrea. I wish I had the answer. My understanding is this program is for kids that cannot go to daycare, and need respid. It's based on their income not the adults so basically it's there for parents that do make money so they don't lose it all. It provides medicaid to supplement your insurance, respid, and equipment. So it is a good program......once you get on it.

jocalyn said...

The nursing home stay is a loop hole to bypass the 7-10 year wait list. Usually it is a 30 day stay in a nursing home to prove that it is cheaper for the state for the person to be in their home with assistance instead of an institution. For kids they allow you to get a letter from you Dr. saying your child should only stay one night as opposed to 30. Not a lot of people know about the loop hole (Rider 28) because they reserve it for those of us who really need it and can benefit from it...pretty frustrating, but when we finally got on it, it has helps a lot!

Cjengo said...

and your right Jocalyn it is a wonderful benefit. I need to control my temper and be more understanding. I just get so frustrated that there are people out there just living off the system without a good reason. We have a legitimate reason, but still hold jobs, etc, and its so frustrating trying to get help. It's also partially my fault though because I am not as educated as I should be on the process.