ONE WOBBLY STEP

10 days ago that’s how it began, with one wobbly step. His one wobbly step has turned into one pretty steady step which he practices often and has progressed into several wobbly steps! Today Milo took about 6 small sort of wobbly steps in the middle of the living room. Boy did he have a grin on his face as he did it, he is so proud of himself. He gets so excited he topples over but he has been trying more and more each day. Watch out when he is proficient at walking, there will be no rest in this house. Chasing him with the ventilator will turn into a full time job from a ¾ time job. Grandma and Grandpa sent Milo the coolest Radio Flyer walker wagon. It has a handle for him to hold onto and push his wagon which can hold his ventilator, battery and oxygen. He loves to walk up and down the sidewalk in front of the house all by himself. He can make it half way down our long block and back. It really is pretty neat, it is most independence he has had. Milo has also learned a new trick…he thinks it’s hilarious. When his ventilator circuit gets in his way or is holding him back he reaches down and yanks it off. He is very proud of his new trick and quite honestly he is so cute it is hard to be mad at him. He yanks it off and starts crawling away just as fast as his little legs will take him, then he will turn around and smile as you are trying to untangle the ventilator and catch up to him. We have had battles when I catch him doing it which usually end with him crying but still attached to the ventilator. The lesson doesn’t seem to carry over though, he still get free on a regular basis. The good news is that he is not in any distress when he is unhooked for a minute or two. In fact we had another PEEP study done which showed some more improvement but did confirm that he does still need the ventilator. We should find out how much we can adjust the ventilator by the end of the week.

DID SOMEONE SAY FOOD?

Milo is getting much better at eating his baby food. He is consistently eating about 20 oz of baby food each day. We were able to cut back on formula a little bit and hopefully soon we will be able to cut back more. He is gaining weight and getting taller. He weighs at least 19 pounds and grew an inch since coming home. It’s true, these guys really thrive when they get out of the hospital. We are continuing to add new foods into his diet slowly but he is still kind of limited in the variety of food but he doesn’t seem to mind. He hasn’t been very interested in drinking from his sippy cup, we have to work on that if we expect to get that g-tube out! Holy teeth, the boy has a mouth full. I can count 6 on the bottom that are through and his 2 eye teeth are breaking through. On top I know he has 4 front teeth and I suspect 4 more but he doesn’t open wide very often & I’m not sticking my fingers in there!

IS THERE A NURSE IN THE HOUSE?

Yup, we have 2 nurses that cover 5 days. We used to have 3 but one didn’t work out L Still no night nurses but it hasn’t been too bad at night. I find that Milo ends up in my bed more often than not. It’s easier and we both get more rest that way. Some nights he starts out in his crib in his room with me on an air mattress in his room and some nights he starts out in a little crib in my room but it almost always ends up with us in the same bed. He’s a bed hog though, especially on the air mattress! It’s not the breathing that keeps him up it’s the eczema and the itching. It’s a good thing we have day nurses though. It gives me a break, a nap, the opportunity to run errands and it gives Milo someone else to play with. He seems to like his nurses even if he gives them a hard time occasionally!

ECZEMA & CURLS

What might eczema and curls have to do with each other? Well Milo has the best crop of longish curly hair on his head but it is preventing any type of medicine or moisturizer to reach his scalp. His poor little head always seems to itch. Baby oil can relieve it for a little bit as can Benadryl or other oral anti-itch meds but this darn dry scaly scalp is driving both of us nuts. I’m afraid the beautiful curls may have to go but I’m not willing to give up just yet. Any ideas?

THIS LITTLE PIGGY

My boy has a foot fetish…he loves toes, feet & shoes. His, mine, or anyone’s who walk though the door. People get freaked out with him touching their shoes because they feel they are too dirty for him to touch but he doesn’t give up until he checks them out. I have to remind people that their “dirty” shoes are walking all over the floor he is crawling on then they lighten up a bit and allow an inspection so Milo can go on about his business. Milo’s cousins came to visit for a weekend and the first thing he did was go after Dylan’s toes. She wasn’t too sure she liked that but his persistence paid off. She let him get her piggies then he crawled right up into her lap, from there on she was alright with his curiosity and they played together really well. The boys took a little longer for Milo get comfortable with, they ran around after being cooped up in the car and Milo wasn’t too sure he liked that but after a while all the kids were playing nicely. It was so cute to see Owen and Milo sitting side by side in the recliner, giggling at each other. Boy do I see trouble in the future. Brett took his role as protector and every time Milo’s ventilator alarmed he made sure someone knew about it. I tried to convince him to just hook Milo back up but he didn’t think that was a good idea. At one point Milo’s trach was pulled back just a little and Brett could see the hole, I think he was kind of curious and grossed out at the same time!

IT’S BEEN 6 WEEKS ALREADY!

Some days it seems like Milo has been home forever and the hospital is a distant memory and other days it seems like Milo just came home. I am impressed that we haven’t had any major hiccups only little ones.

WHERE’D YA GO?

I know some of you probably though we fell off the edge of the Earth by the lack of activity on this blog. We didn’t, well maybe I fell off the edge of cyber space but I think I have crawled back onto the ledge. Not far enough to be out of danger of another fall but I think I have my footing and hopefully will post more often. Still no high speed internet so no pictures but hopefully Milo will give me a break long enough to get that figured out on the phone. Oh yeah, there is a neat feature on this blog that gives you the opportunity to leave comments (or berate me into posting more info) for us. Just below the post it shows you the date and time of the message and just beside that it says 0 comments (or a number if someone has already left one). Just click on the comments word and you can leave a message; we’d love to hear from you guys!