Monday, January 25, 2010
The house is cleaned, the floors steam mopped & the bathroom sanitized so now it is time for me to shower and get to bed. Since Milo went to sleep not longer after his dinner I expect to be up in the wee hours changing sheet tonight :0)
Sunday, January 24, 2010
Off to clean up and then hopefully bed time for me!
Saturday, January 23, 2010
He's so cute in his little undies, even the smallest size I could find (2T/3T) are baggy on him. Some I even have to roll the waistband and they still sag. Socks on the kiddo are not such a great idea either :0)
Friday, January 22, 2010
Must try it out! No falling in here.
Well I'm off to re-read my 40 page e-book once more for inspiration. Wish us luck! I'll try to report in over the next 3 days to let you know how it's going and if it was worth the $24 e-book.
Tuesday, January 12, 2010
Tammy & Milo May 2009
First of all I want to thank our two wonderful nurses who had been with us since the day Milo came home from the hospital. Tammy & Shirley you guys are the best, thank you so much for all your help! Having a medically complicated kiddo requires a lot of vigilance, add in Milo's activity level and boy does it make for a busy & some times crazy day. Hauling around Milo & all his "stuff" was no easy feat in the beginning. I don't think I would have made it through the last 19 months without you guys, or at least not as calm and rested as I was :0)
On the other hand there a lot of things that are nice about not having nursing care. First is that I don't have to get written doctors orders for every little change in medication, food, therapy, etc. I feel like I don't have someone (the agency not our in home nurses) watching over my shoulder second guessing every decision I make about Milo like when he is sick enough to go see the doctor or if he really needs to go to the ER for falling and bonking his head on a toy and getting a eighth inch cut on his scalp. I know that all of this was to cover the nursing agency in case something major came about but it is nice to know that all the decisions are mine to make without having to worry about what the agency thinks about my decisions. And ya know what? It make us that much more of a "typical" family although still far from normal.
As I mentioned earlier we haven't had any nursing since just before Thanksgiving and things have been going quite well. There was some adjusting to do though. I learned to take a shower at night while Milo sleeps because leaving him to the house for even a few minutes is no good, did ya see the picture of him in the sink in the slide show? I was in the bathroom for less than 2 minutes! I always left Milo with a nurse to do the shopping, not so much any more. He goes where I go and he's learning to like it, slowly. He hates riding in shopping carts so the seat belts are my best friend, his worst enemy. Now that he is in preschool 2 days a week I can hopefully get most of that stuff done while he's at school so I don't have to torture him so much.
Today was a significant day in life with Milo. Another day I couldn't wait for nearly two years ago. Today went by with little fan fare, it was a normal day. Now we just have less paperwork in the house and have reclaimed the shelf where the chart & paperwork "lived".
Wednesday, January 6, 2010
January 6, 2007
Still In The Hospital ICU Step-down Unit
January 6, 2010
First day of Preschool
Milo's first day of preschool went about as I expected. He did not like having to follow directions or participate in group activities. I stayed with him today to make sure he would be alright (breathing wise was my main concern) and although he threw himself on the floor several times he did okay, not great but okay. His favorite time was play time of course, he played nicely with the other kids and was visited by the occupational therapist. It was cold and snowy today so no outside play time which was a bummer because he has been talking about the playground for days. They did go down to the gym but he refused to do anything but cry, poor guy was just out of his element and didn't know what to expect. He sat nicely for snack time although he didn't eat a thing, he did play with his snack and had a sip of water. At the end of school the kids gather on the carpet one last time. Milo sat much better this time :0) The teacher draws a picture and the kids "help" her write a sentence or two about the picture. Today she drew a picture of Milo and he recognized himself, it was a proud moment. Their story was: Today we have a new friend. His name is Milo. Then it was time to go home. School lasts all of 2 hours and 45 minutes and he goes 2 days a week, Wednesday & Friday. I think in about 3 weeks he should have the routine down much better. So Friday will be an interesting day. I have decided to just drop him off and see how he does without me there. The teachers will have their hands full that's for sure! I tried to keep as low a profile in the classroom as possible. When he couldn't find me he cried but I imagine he will be fine...eventually :0)
Milo's least favorite part of the classroom:
The Circle Time Carpet!
Monday, January 4, 2010
I have a few hopes for this year. I hope that Milo will find his voice just a little more. It can be verbal or with a communication device, as long as he can tell me what is going on in that little head of his. We've been struggling with tantrums lately that I can best attribute to not being able to communicate and be understood. He's doing a great job with sign language but he can not communicate with the general world around him. I am very grateful for the amount of communication that he does have though :0) I really really hope we can get his eczema under control, by far it has been the most irritating aspect of his medical stuff. I hope that he will learn to eat even just a little. Really it would be nice but I'm not pressuring this at all. He is more interested in eating or at least playing with food which is a step in the right direction. He requests to be in his highchair to eat cheese or whipped cream, it's definitely progress. I hope he blows the socks off of the preschool staff! He starts school on Wednesday, I can hardly believe it. At his evaluation he didn't feel like preforming the tasks he was asked to so I think it was not a great snapshot of his abilities. I hope he gets the hang of school and follows their routine instead of insisting on doing his own thing.
I know there are a few medical things brewing for Milo this year. In the spring he will have to have another heart cath so they can get another good look at his pulmonary arteries and how the narrow parts are affecting his heart. There can be several outcomes 1. Everything is great no further intervention needed right now 2. They can try to balloon out the narrow areas which they tried last year and Milo didn't tolerate well on his right side. 3. They can put in stents to help hold open the arteries but he is kind of young for this and they would have to be expanded and possibly replaced as he grows and again he may not tolerate this either 4. This is the biggest and riskiest--another open heart surgery to cut out the narrow areas, really it isn't a surgery on his heart but that's the best way to describe it because it will require the incision down his chest, being put on a heart-lung bypass machine and his sternum being wired back shut again. I really hope this doesn't need to be done! The other medical issue that is being looked at is his genetics, to see if he has any genetic syndromes that might explain all his abnormalities. So far they haven't found anything but he has a few more blood tests and x-rays that I haven't heard back about. The genetics doctor is concerned about him being short, me not so much. If they find something it won't change Milo at all it just might explain a few things and give us some things to look for as far as growth and development. I've been kind of defensive about his genes which is kind of strange seeing how none of them are mine. I think it's because I don't want to hear that something else is "wrong" with him, he is perfect just the way he is.
Whatever 2010 bring us we will take it head on and thrive just as we have for the last 3+ years!