Project C.U.R.E.

It is amazing how many medical supplies come along with having a trach and ventilator, not to mention a central line and g-tube! I knew when Milo was going to get his trach out and decreased the amount of supplies I ordered but my house was still swimming in medical stuff. Some of it was just odds and ends but there was a lot of good usable supplies that I refused to just throw out. One day I was pondering just what I was going to do with all these left-overs and one of Milo's nurses from Children's told me about an organization that the hospital works with (Thanks Nicole!). I investigated further and gave them a call to make sure they would take what I thought was a sizable donation. They were gracious and said they would take anything I had to offer. After spending weeks gathering supplies from every corner of the house I had my donation ready to go, 3 boxes & 2 paper grocery bags.

This week I had the privilege of donating Milo's extra medical supplies to Project C.U.R.E. This is a wonderful organization that sends medical equipment and supplies to areas of the world who are in desperate need. I drove up to there warehouse, the big door of the loading dock was open and I was amazed at the size, it was huge. I unloaded my donation in the doorway and what looked so big at my house looked like a meager offering sitting on the loading dock of the warehouse. Several volunteers were busily working inside sorting donations into there allotted bins, it looked like a daunting task. Some of what I could see looked like outdated equipment by our standards but I'm sure it was in fine working order and would help save lives half a world away. There was a sign that said that said the next donation truck was going to Belize, I wondered how long it would take before that load would leave for it's destination. After a few minutes a very nice gentleman came out and had me fill out paperwork about what I was leaving (for tax purposes). He told me that because of the generosity of health care organizations, groups and volunteers a 40 foot container (size of a semi-truck trailer) left the warehouse every week bound for those in desperate need. He said that as big as the warehouse was the stock turned over quickly and about $400,000 worth of medical supplies left every week. As I was leaving he handed me a copy of their newsletter.

Later that day I read the article on the front, I was moved and humbled. One of the places that Project C.U.R.E. donated to was a maternity hospital in India. The article said that at this hospital about 3 in 10 babies were born prematurely. Due to of a lack of resources the babies were placed in metal bins beside their mothers, left to fend for themselves. The mothers and babies would leave the hospital less than 24 hours after birth no matter how small the baby was. Project C.U.R.E. was able to donate several isolets and supplies to this hospital to help these innocent babies have a fighting chance.

Stories like this make me realize just how lucky we are to live in a country of such privilege. If Milo were born in a country like that he would not have survived more than a few hours at best. At times I complain about the health care here and insurance and equipment suppliers but I need to remember it is a privilege to have access to medical care, the availability of insurance and public aid. There is considerable talk about our "broken" health care system in this country and don't get me wrong it definitely needs some work but this week I am just overwhelmingly thankful that in our country we have access to such wonderful hospitals equipped with the latest technology, doctors, nurses and other health care professionals. I hope our meager donation will help to save the lives of a few people around the world or at least improve their well being just a little.

If you get a chance please check out the website for Project C.U.R.E. (www.projectcure.org) If you have any extra medical equipment setting around your house think about donating it, there are donation centers around the country. If you are able, a monetary donation will help them with the shipping costs. If you have some extra time consider volunteering and please spread the word to your friends, co-workers and family about this wonderful orginazation.

Little Monkey

Friday we had the freedom of not having a nurse. You see when we have a nurse it is a great help but things have to be done on a schedule. There is a little bit of room to wiggle but not a whole lot. So we had a lazy day, a slow start to the day. After our rather enjoyable morning we set out to investigate a new place to play. I had head about it a few months ago but we just hadn't made it there yet. This new place (or at least new to us) is called Little Monkey Buziness, it is designed for kids from crawlers up to about 6 years old. There is a large play area with several different playscapes, an art room, a party room, a snack bar with smoothies and coffee for the big people as well as some snacks and they have free wireless internet. All that for a reasonable $7.50 per kid to play as long as you can stand it. When we got there around 11:30 there were only about 3 other kids, so it was great for us to be able to explore the equipment without having to worry about holding up other kids or big kids being too rough. Milo found a little boy and girl (twins) close to his age who he played around quite a bit, found out they just turned two but both were bigger than Milo :0) We stayed a little over an hour but then it was time to head home for lunch and a nap, it was definately time. We had great fun and plan on going back for more fun in the future! Next time we'll get there a little earlier so we can stay longer.

Here's a little video I made about our adventure. Some of the pictures are not that great and it's my first attempt at making a video with windows...Enjoy.

a boy, some dirt and some water...

I JUST LOVE MUDDY TOES!!

My Big Little Boy

I can hardly believe how big Milo is getting. He is getting taller & he is finally gaining weight at a good rate but he is also becoming such a big boy developmentally. He is constantly wanting to help me, laundry is one of his favorites right now. We have a front loading washing machine and he figured out he can open the door and just loves putting things in it. Now I will admit, not everything he puts in is appropriate for the washing machine, but he's got the idea. I just have to check it before I run it to make sure there isn't, say a flashlight or playing cards, hiding in there :0) He also wants to help make his food. Everyday I make up his food by putting table food into a commercial blender and liquefy it so it can go through this g-tube. He loves helping to pour, he's not a huge fan of the noisy blender, and his favorite thing to do is put the lids on the bottles before & again after I divide up the mixture into his four meals. I finally got him a little step stool so he is tall enough to see and help. His little stool is hauled all over the house to help him play and sometimes get into trouble. Occasionally it has to "disappear"!

A week ago I broke down and converted Milo's crib into the toddler bed. I've known for a while that it is developmentally appropriate for him now. He only has one attachment at night (pulse ox) and it has a pretty long cord so I figured it was time. He just had to be in the middle of everything "helping" as normal but I finally got it done despite his help. He loves his bed! When he is upset and being overly dramatic he runs into his room and flops down on his bed crying and pouting...it really is too cute. I lost track of him one evening and found him in his dark room sitting on his bed, he was tired. My biggest fear was him repeatedly getting up when he was supposed to be going to bed. The first nap he took in his big boy bed I put him back at least 50 times in 45 minutes before he got the message, the second nap was around 30 times but the third was only a couple. Amazingly he has never tried to get up at night (knock on wood), he must be a tired guy!

Milo also had his pre-school evaluation this last week (sniff, sniff) I can't believe he's almost 3. At three years old the public school system is responsible for providing Milo with his necessary therapy and that typically happens in a preschool setting. The evaluation process was, um well, exhausting I guess would be a good word. I had a very active 2 1/2 year old to constantly watch is a new environment full of toys, chairs, and tables (the last two being his favorite things to climb on). They handed me a stack of papers to fill out including his medical history, yeah right like I can fit that in their forms! In the middle of trying to corral Milo and fill out this multitude of paperwork the school nurse comes to do his hearing and eye tests, get a weight and height. I don't think she was very successful at any of it and I had to help her rather than fill out paperwork. The actual evaluation with a speech therapist, occupational therapist & school psychologist went alright. He didn't want to sit and play the games they wanted him to so they could assess his skills. He bounced around the room looking at everything, touching everything and climbing on everything. I'm pretty sure they thought he has ADD :0) Finally he did show off his skills but only on his terms...my stubborn boy. They were all impressed with how much sign language he knows. In early October I'll go back and talk to them about which school he will attend and at what time (I'm praying for morning) and I get the every lovely job of writing an IEP (Individualized Education Plan) for him. Oh, I finally did get that paperwork sort of filled out and briefly went over his medical history with the nurse at the end but Milo was bouncing off the walls so she let us go.

I can hardly believe that summer is coming to an end. We have had some fun times in the last month. We went to the Cheyenne Mountain Zoo in Colorado Springs with Marissa and Faith and some of our family. Milo and I also went to the Denver Zoo with one of his nurses a couple of weeks ago, that was lots of fun too. Yesterday was our party to celebrate Milo's Naked Neck and boy did we have a great time. Lots of family and friends came to help us celebrate. We are very fortunate to have such a wonderful extended family!!

The little kids including Milo & Marissa played in the water for a bit,

We had a good barbecue including "Trach Cakes" baked by Faith's mommy, Jen, aren't they cute, they look just like a trach. Very Creative :0)

Good times relaxing in the back yard while the kids played with balls, on the slide and the swing,

Jumping on the little trampoline and

Milo and Faith's favorite activity, playing the ice water with the cold sodas :0)

A Significant Day

Today marks a significant day in Milo's life. Today the balance has shifted. Today the number of days Milo has been at home OUT NUMBER the total days he has been in the hospital. It is a strange kind of milestone, definitely a good milostone though. 16 months ago when he was released from the hospital I looked forward to this day with much anticipation, it had so much significance to me back then. Now it's just another day on the calendar, the memories of all those endless days (and nights) spent in the hospital are growing fainter with each passing day.

Milo continues to do great without his trach. He was grumpy and clingy for several days but after he caught up on his sleep he has returned to his normal happy-go-lucky self. We've hit a bump in the road every now and then with his stomach but nothing out of the norm for Milo. He is making so much more noise now and let me tell you he can now be very LOUD when he screams and screeches :0) Now we have to work on volume control! The best part is being able to hear all his "little" sounds that got lost with his trach. I can hear all of his giggles and laughs, his sighs, and the little babbles are just precious. I savor every one of those noises. In a few months I'll probably be complaining how much noise he makes...he'll be the kid in class that talks non-stop. Milo now has 3 words! Of course his first was Mama, then "open" and just the other day "please". Now open & please are far from perfect but definitely intelligible. I was trying to get him to sign or say "open" on Sunday when he spit out "please" I was so excited that he got his box of toys opened quite quickly.

This Saturday is the Celebration of Hope for the Memorial NICU graduates so we plan on going down to Colorado Springs for this event. It will be the first time Milo & I have driven more than 30 minutes without anyone else in the car. Luckily we have the portable DVD player, what did parents do without these things :0)

I also wanted to take a quick second and that all of you who left kinds words of encouragement for Milo & me in the comments. It is so nice to hear from all of you.

4 Days & Counting

I can hardly believe it's been 4 days since Milo's trach came out. He is too cute, I ask him where his trach is and he still points to his neck :0) I'm trying to get him to sign "all gone" but he hasn't caught on yet. I guess that's good in a way, he must not notice a big difference. Sleeping has been the biggest challenge so far. He just doesn't seem to get to sleep as easily as before & I'm hoping that gets back to normal too. The good thing is that he hasn't had oxygen while sleeping since coming home from the hospital. He seems to be keeping his sats around 94 so at least I don't have to fight with him about the nasal cannula because that has become a huge battle. He did have a little stridor the first evening while at the hospital but it went away while the night resident was deciding what to do. It probably lasted all of 5 minutes. I've been watching him like a hawk though. He was breathing a bit fast yesterday but seemed to settle out and has been fine today. Sometimes he will sound a bit wheezy too but only for a bit. We got a new prescription for Atrovent "just in case" we need it. I will say that he has been more crabby than normal but I guess that's allowed for a little while.

He is making more noise too! He makes a noise that sounds like a siren and it sounded like he was singing a song while we were outside a bit ago. I tried to get video, it's not the best but it gives you an idea

He crashed into the wall & fell on the floor while running down the hall the other night and gave himself a shiner on his right eye, that makes for beautiful pictures :0) Just proves he is all little boy! Here's some pictures...

about 20 min after returning to the floor after decannulation

this is what his stoma looked like 24 hours after taking the trach out

playing outside this morning

Milo's Naked Neck!!

We got to the hospital yesterday afternoon around 5:15 pm and Milo was immediately spoiled by the nurses. In fact I didn't see him for the next 10 minutes :0) he came back will all kinds of new toys. He did really well playing in the room last night but was not about to go to sleep. I would think he was asleep and try to put on his nasal cannula but he would wake right up, we fought over this for a couple of hours. Finally about 12:15am he gave up and fell into a sleep deep enough that I could successfully get his oxygen on him. Of course it came off at some point but his oxygen saturations were high enough that we didn't bother putting it back on him :0) He did really well with his trach capped, in fact I think he might have been better than without it capped. He slept in until just after 8:00 when we heard someone in the hall say that transport was on their way up get him for his bronch. Kind of a rude way to wake up but we went down stairs bed head and all. His bronch went really well, and he was back in the recovery room in about 30 minutes. They finally let us back to see him and I was a bit disappointed to see the trach still in his neck. The nurse said they were waiting for Dr. K to come and take it out, she wasn't sure if the Dr would be alright with us being there for that or not but we could step out for a minute if necessary. Dr. K came by and asked me if she was going to take it out or if I was so I opted to do it. At 10:00am I took his trach out of neck for the very last time and the Dr. put a bandage over the stoma. He did really well, coughed a bit and cryed, but then fell asleep a bit later. His oxgyen sats actually went up with his trach out and he no longer needed oxygen (he normally does after anesthesia). About 10:30 we went back to his room and about 20 minutes after that he was good to go. Handed me his binky, signed "car" and "outside" poor guy he was ready to go but we have to be here until tomorrow morning. He continues to do well and soon his IV should come out. He just got done having chair races in the hall with his nurse & the charge nurse :0)