SIMPLE PLEASURES

Yesterday evening Milo and I went into the backyard to water the grass. It was probably around 8:30, still light but finally cooling off a bit. Milo had a great time running though the grass, it was so nice to see him enjoy a "typical" kid activity. I decided to join him, we sat in the grass and rolled around. I lifted him the air and pretended he was a airplane, he had the biggest grin on his face. I was so nice to just enjoy the evening and watching him play without having to worry about oxygen tubes, ventilator circuits disconnecting and whether or not he was breathing well enough. Care free is the way to be and I see more and more of it in our future!

Along with the fun stuff comes the more typical toddler behavior too. My phone ended up in the toilet yesterday. When he is free to roam he must be watched closely around the potties. He was in my bedroom playing and wandered into the bathroom, he doesn't get in there very often so he was exploring, I caught him in the shower investigating the drain at one point. Shortly after that I saw him head toward the potty with an item that was beside the bathtub so I rushed in to intervene. I discovered that he had already dumped an empty shampoo bottle into the water, "Oh well," I thought "no big deal" and I fished it out only to uncover the telephone had sunk to the bottom. I pulled it out shaking my head thinking "I guess this really is my fault," and set it in the sink. This morning I went to assess the damage and it seems to be in working order. It was asking to be charged. I haven't used it yet but it looks promising! At least it wasn't my cell phone, I have 2 other extensions on the house phone I can use :0)

IT TRULY WAS AN INDEPENDENCE DAY

It may have been Milo’s second 4th of July but it was his first Independence Day. Milo had so many Milostones over the holiday weekend I’m not sure I can remember them all. We went on our first vacation, to Alamosa to visit friends and family. Milo did incredibly well considering it was his first long car trip, the first time he was in another house, his first large family gathering, the first time he played with a baby younger than himself, the first time he met his great-grandpa, the first time he sat on great-grandpa’s tractor, he got his first scraped knee and elbow while playing outside, his first parade, his first fireworks, his first time being outside after dark, his first car ride in the dark, his first church service and I’m sure there were so many more firsts that I just can’t remember right now.

I wasn’t sure we would be able to make the trip even though we had been planning it for a while now. The weekend before Milo had a nasty stomach virus that landed us in the Emergency Room and finally admitted to the hospital for some IV fluids to rehydrate him. It was a short stay, only 2 nights, but we got to see many of our friends, nurses, and doctors. Milo came home on Monday but he still wasn’t feeling quite like himself, his stomach still bothered him but he is a trooper and made it though the worst of it. Aunt Peggy was our chauffer and we decided that we would try to make the trip and if we had to turn around we would. On Thursday we left Aurora at 1:45 and arrived in Alamosa at 6:00 with only one stop in Walsenburg to stretch our legs. Milo did very well, I wasn’t sure how he would react, if his stomach would bother him and how he would tolerate being strapped down for that long. We got to my parent’s house and Milo was very confused about where we where and why Grandma was there but he took it all in stride and in no time was exploring the house. On the 4th of July we went to the parade in downtown Alamosa, Milo seemed to like it except for all the fire trucks at the end who set off the sirens at the same time! After the parade we wend back to Grandma & Grandpa’s house for lunch where Milo had a great time playing with all his cousins. That night we went to the fireworks, I wasn’t sure how Milo would react to the loud noises but he didn’t seem to care and got board in the middle of the display. Saturday we had a little get-together for people to come meet the little miracle they had prayed so much about. Again he took it all in stride. Sunday we went to church where he fell asleep half way though the service. After lunch and a flury of packing we left Alamosa at 4:00 and arrived in Aurora at 9:30. Milo was less patient with the trip this time. He was way to tired and just didn’t want to be held down so we ended up stopping several times to avoid complete meltdowns because those are not pretty in Milo, they involve blue lips and strange breathing. Yesterday and today Milo has been more tired, trying to recover from the big weekend I imagine, I know I am still trying to! Our nurses are also on vacation this week so we only have 2 day shifts covered but we also have 2 night shifts covered because a couple of Milo’s night nurses from Children’s are helping out when they can. I think I might be exhausted by the beginning of next week!

One of the best things about our vacation is that Milo was able to be off the ventilator for several periods of time during the day. The week before we left Milo had a pulmonology appointment where they decided to let him try periods of time away from the ventilator and the carden valve. He just has a little “artificial nose” covering his trach to filter the air and trap some humidity so his airway doesn’t dry out. His oxygen has been decreased to ¼ liter while on the ventilator and in Aurora he generally doesn’t need oxygen while using his “nose” but in Alamosa he certainly did. 2000 feet higher in elevation does make a difference. All the kids were so good about untangling his oxygen tubing and making sure we knew when Milo pulled it off.

Milo finally has a physical therapist; in fact it’s a husband wife team who came today to meet him. They are excited about working with him and were impressed that he can do all that he does. They are primarily going to work on balance with him because he still doesn’t walk in a very straight line. Next week we have an occupational therapist coming to start working with him. He has had a speech therapist for a few weeks now so I think now we finally have all his therapies going again, it only took 3 months.

Well better go for now the little guy has just awoke from his nap and the thunder has him a little bit concerned. He doesn’t seem scared just a bit concerned about where that noise is coming from. I’ll try to get more pictures posted soon!

MILO HAD BLUE LIPS TODAY

Yup, Milo had blue lips but they were an alright kind of blue lips. He had a blast playing in the water outside today. This spring I found the best water toy for toddlers and bought it, Milo has been studying the box just waiting for the chance to play with it. The weather was warm (ok, it was down right hot) so out of the box the pool came. He wasn't too sure at first but quickly warmed up to it and dove right in. He has no fear of getting wet, not sure that's a good thing for a trach kid though. The pool isn't deep, only a couple of inches and the rim sprays water. He liked the slide and didn't even seem to mind the sprinklers at the bottom that almost got his face. Despite the heat cold water chills a boy and the lips showed it. By the time his chin was shivering he was done playing and walked himself back into the house and looked at us like "aren't you coming"? I think I found his favorite summer activity, sounds like this little pool will get a ton of good use.

THE PITTER PATTER OF LITTLE FEET

The pitter patter of little feet accompanied by the beep of the ventilator followed by a large sigh from every adult in the house. This is the scenario that plays out countless times each day in our house. Milo is officially a walker; he has been for several weeks now. In fact he is getting quite good at it. His favorite activity is to pull off his circuit and RUN down the hallway. He is quick and if you don’t chase him he will get into his bedroom then peeks out to see where you are. Usually we are fumbling with his ventilator trying to untangle cords and oxygen tubing to get the vent down the hall. If he is feeling especially ornery he will run to the bathroom and put his bath toys in the potty. This past weekend we got sod installed in the backyard and Milo was so cute running across it. He wasn’t too sure he liked the feel of the grass on his feet and between his toes at first but he got over it! Outside is the same, he pulls himself off the ventilator but he has so much more room to run in every direction. I will say we are not always as quick as we could be to hook him back up, he seems to do fine off the vent for a few minutes but we are not pushing the limits to find out how long :0)

Going back a little bit—Milo had surgery to remove some scar tissue from around the hole in his neck and they replaced his g-tube at the same time. He did pretty good with surgery but his lungs were kind of yucky for a little over a week so we ended up at the ER for a quick visit. He had a chest x-ray to make sure he didn’t have pneumonia and they took a quick look down his trachea to make sure that was alright. After 4 hours and no real answers we went home with some extra steroids, an inhaled antibiotic and an appointment to see the pulmonologist. Basically I learned to call the doctor in the morning if I have concerns because if you call too late to be seen in the clinic they make you go to the ER. After 5 days of increased steroids and 2 weeks of the antibiotic he seems to be doing much better and he is as ornery as every! After the g-tube change it took his tummy some time to adjust to the new g-tube because it functioned properly. The old one had a malfunctioning valve inside that is supposed to keep the stomach contents inside him. It leaked all the time but it also allowed extra air out of his belly. The new one doesn’t leak but we learned that we have to “vent” him now to let the air out, we hadn’t had to do that for at least 8 months so that took some getting used to for all of us.

Milo finally has a speech therapist; she started working with him last week. I could tell that he is interested in making noises and words so I insisted that we get speech therapy set up. We are still waiting on physical and occupational therapy, the organization we are working with for his therapy has been very slow so we just might find another organization for his physical and occupational therapy. I am so excited about his speech therapist, she is wonderful. Milo was very glad to play with her and excited about the toys she brought with her. She is also going to work on eating with him. I keep telling everyone that he would panic if a chunk of food got in his mouth, either chunky baby food or a rice puff. Of course the end of last week he started eating a few rice puffs, he picked them up and put it in his mouth. He still makes a funny face but he swallows it and he’s totally fine with the Stage 3 baby food we had for him. Go figure, he made a liar of me once again but I’m alright with that! He is drinking a little bit from his sippy cup again so progress is being made.

I can see the new things that Milo is learning all the time. He is starting some pretend play by sharing his pacifier with his stuffed Mickey Mouse and giving hugs and kisses to all his stuffed animals. His hugs are really just laying his head on the animal and kisses are putting his mouth to the animals face. TOO CUTE!! He is still obsessed with toes and feet, his and everyone else’s. He actually bit my toe the other day; I couldn’t get mad at him because we are so excited when he puts anything in his mouth. Luckily he doesn’t do that very often and only to me (so far). He learning to roll a ball back and forth with someone and rolling his cars on the floor or table rather than just spinning the tires. He is into climbing now. He climbs on the edge of his toy basket to empy the shelf on the entertainment center and climbs on his suction machine to get onto the couch. Luckily he has learned how to safely get off the couch but I don't trust his too far yet.

Well I’d better go for now. Milo’s vent has been almost constantly beeping while I escaped to write this so his nurse is probably very tired of chasing him around :0)

A Little Bit Of Freedom

Did you notice what is missing in the photo above? That's right, he isn't attached to a ventilator. Unfortunately this is only a little break but it gives us a taste of what is to come. Milo has been given a preview of the freedom that awaits him when he able to rid of the ventilator. Yesterday we went to the hospital and met with Cloy (respiratory therapist) who gave Milo a new piece of equipment, a very small one that replaces the ventilator for a couple of hours each day, right now he get's to use it for 2 hours each day. It is called a carden vavle and it provides Milo with the constant pressure he needs to keep his airway open. His PEEP study from Monday shows that he has improved enough to be able to use this little valve. It has oxygen attached to it and it attaches right to the elbow adaptor on his trach so the only thing Milo has to drag around is an oxygen tube. It is so much lighter and we can make it as long as we want. Milo can now get anywhere in the house he wants to without having a big person hoovering over him pushing the ventilator. I think it's about as nice for me as it is for him. It took him awhile today to figure out that his range is much larger but before long I found him in the bathroom, at least he wasn't playing in the potty (yet).

Milo has huge ugly, nasty smelling granulomas (a type of scar tissue) surrounding his trach stoma that will be surgically removed next Wednesday. He will also have a bronchoscopy done since no one has looked down his trachea since the end of November. Hopefully he will have his g-tube changed at the same time because it has been leaking like crazy lately. After 15 months the poor little thing is wearing out and won't stay closed. Surgery is scheduled for 7:30 am so that means we have to be at the hospital at 5:30 am. If everything goes as planned Milo will be able to come home after the procedure, so let's all pray that Milo behaves himself. Of course if we have to stay at least we will be among friends :0)

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!

REFLECTIONS

Today is Mother’s Day. A year ago I wasn’t sure I would be celebrating this day in 2008 with my little boy. A year ago today Milo was recovering from his 7th (and last) episode of having to be fully resuscitated. A year ago today I was wrestling with the information doctors had given me a few days before—Milo had a 10% chance of getting out of the ICU and that was being generous. A year ago today a neurologist came into his room in PICU to tell me that my precious little boy had moderate to severe brain damage and he would never be a normal child. This is why today is such a miracle. As I write this my son is not only out of the ICU he is happily playing on the floor in his own home. Not only does my son not show any signs of brain damage, he seems quite smart at times (I know he could have learning disabilities later). This little miracle is catching up to all the normal milestones for a child his age. Yes he does still have some obstacles to overcome. He has his tracheostomy, is still dependent on a ventilator to breathe and gets most of his nutrition though his g-tube, but he is a miracle! He is proof that God is in control, that man and science and doctors do not always hold the answers, that sometimes faith is all we need. God has a plan for each one of us even if we can’t see or believe in it at times of crisis. God has a plan for Milo, for me, and for all the people who have crossed paths with him. Some parts of his plan have already seen and I am certain there is so much more in store for us.

Today as I celebrate my miracle, my son, I can not help but think all the mothers who’s children lost there battles and the mothers who are in the PICU wrestling with similar situations this year. Please pray for these people to receive the guidance and peace they need as well as thank God for the miracles he has preformed.