2009 In Review

Hey Mom, how do you update my blog...I'll do it!!

I can hardly believe that 2009 has drawn to a close. I've been thinking about my favorite memories of this year and thought I'd share some of them with you. In January we went to the Stock Show and Milo got to pet a pig and ride on a horse, he was in heaven. Milo's broviac also came out in January. April was a big month for us. On April 1st Milo had been home for one whole year, 12 consecutive months, what an accomplishment. We traveled to Alamosa for Easter and woke up to a couple of inches of snow Easter morning. Milo hunted a few eggs but lost interest pretty fast. April was also the 2nd anniversary of Milo's adoption, what a great day. In May the ventilator finally left our house for good, we had a party! We were also able to get together will all our trach friends for a wonderful picnic in the park. In June we had great fun playing outside, so much that we had to put a fence around the front yard to keep the little one contained. Milo discovered worms, playing in mud & playing with the hose. July started with a trip to Alamosa for Independence Day. We went to the parade and watched fireworks with family. We also took Milo to the mountains for the first time. He did alright but definitely needed oxygen if he got upset. July ended with one great memory, Milo's trach was removed. It was a long 3 days in the hospital with a wild child but well worth it to come out with a naked neck. In fact Milo hasn't used oxygen since his trach came out either. In August we attended the NICU reunion in Colorado Springs where we got to reconnect with nurses, doctors and fellow families. It was a great time spent with friends Marissa & Kevin and their families. The next weekend we went to the Cheyenne Mountain Zoo in Colorado Springs where we met up with Marissa & Faith for some good animal fun. To round out the month we celebrated the departure of Milo's trach with a party for friends and family. In September we went to Alamosa again to visit my grandparents before they left for their winter home in warm southern Texas. October was pretty exciting! We went on vacation to southern Illinois to visit friends. We had a great time, Milo got to see more pumpkins than he could dream of, got to ride a pony and hang out with the big horses and see brand new baby kittens. He got to play with kids his age all week then we tried to go home on the airplane unsuccessfully so a few days later we drove back to Colorado. In November my baby turned 3! It hardly seems like he should be that old. Those long days in the NICU, PICU and on the 8th floor are long behind us now. We had Milo's Birthday party in Alamosa with just a little bit of family. H1N1 was still a major concern so we played it safe with a little party which was alright because Milo wasn't feeling all that great anyway. Christmas was fun this year. About a week before Christmas Milo figured out that Santa brings you what you ask for. Santa had to scramble and do a bit of last minute shopping! Milo doesn't like to tear wrapping paper (although he will tear up other kinds of paper) so opening presents was a little slow but he had fun and ended up with more toys than he knew what to do with at the time. He's definitely figured it out now!

Now for the medical stuff :0) The most exciting medical advancement is that he is breathing without the assistance of machines or little silicone tubes in his neck and doing a pretty good job of it as well. Milo's stoma (hole where his trach was) closed up within a week which is pretty remarkable and now he is "water tight" he can take a bath in more than a couple inches of water and maybe we will go swimming this summer too. Just before Christmas Milo came down with his first cold. He did pretty well, his oxygen levels remained acceptable and he didn't work to breathe but it did wear him out after a couple of days. He ended up with steroids for 5 days and that did the trick, by Christmas Day Milo was back to normal. Last January Milo's broviac also came out a bit unscheduled but that was alright. So now we are down to just a g-tube, only one extra hole in his body. Well over the first half of this year Milo's stomach was still not feeling well. He had all kinds of tests, tried many medications but no one could figure it out. I finally suggested one last medication and it worked wonders. Milo's retching and misery has been all but gone since August. Hallelujah! Of course all "cures" have their side effects and it seems this medication is causing a strange itchy outbreak on his arms and legs. Poor guy he can retch and be miserable or he can be bumpy and itchy, I picked the latter. His eczema flares up several times a month but at this point it is just an annoyance he has learned to live with. I took Milo to National Jewish for a food challenge to corn and he passed. That has opened up a whole new world of food that Milo can eat, you wouldn't believe how much stuff has corn syrup or corn starch in it. Last spring Milo had a heart cath to check up on his pulmonary arteries and the site of his aortic co-arctation repair. Turns out the site of the repair looks wonderful, they never would have known he had it fixed. His pulmonary arteries are another story. They have grown which is a wonderful thing but both of them have areas of constriction which is not so good. We took a wait and see approach at that time so this next spring he will have another Heart Cath to see how things look and how it is affecting his heart. In July we went to see a genetics doctors and she ran more tests to figure out the mystery that is Milo but nothing turned up in those. She has a few more tests to do so we will see what if anything comes from those.

Developmentally 2009 has been a great year for Milo. This summer Milo graduated from Physical Therapy! He is doing great with both his gross & fine motor skills. He can walk, climb stairs, run and even jumps some. He is sitting "correctly" more often than before. He has great eye-hand coordination and a great eye for detail. I think his biggest accomplishment is in communication. His vocabulary of sign language has exploded this year. He picks them up so fast now. He is very cute when trying to tell a story about what he heard or saw. It is kind of like charades but the details he remembers is wonderful. His oral language is definitely lacking. He says mama, hi, bye & no. He makes lots of other noises so I know the rest is coming in his own time.

As I say good-bye to 2009 I can only wonder what 2010 has in store for us...but that's for another post! Happy New Year everyone, I hope 2010 finds you happy & healthy!

Preschool...

Yup my little guy is going to start preschool. Not until January though. He will only go 2 days a week for 2 hr 45 min each day. He will recieve speech therapy, physical therapy & occupational therapy while there as well as learn how to be in a classroom setting and getting along with other kids. I can hardly believe he is old enough for that. He will be 3 in 10 days, WOW.

Yesterday I had his IEP (individualized education plan) meeting with Aurora School District. It is an interesting process with a complex medical kid like Milo. Clearly the best school for his communication would have been in a total communication (sign language & spoken) classroom but there is no school nurse there at all times. The school district was also very reluctant to put him there but if I would have pushed hard enough he could have gone. This program is also 4 days a week for more hours a days and I just wasn't sure he was ready for that (I am but I don't think he would handle it very well). In the end I consented to him going to a school with at least one RN in the building at all times & in classroom with other kids closer to his age and of all abilities from severely affected kids to typical peers. The teachers will learn some sign language so Milo can communicate with them. I am hoping being in such an environment will spur his spoken language skills. I did get a couple of important things put into his IEP too. First is that the IEP would be formally reviewed at the end of May so that if he does need to go to the total communication class (which is at an elementary school much further from our house) that can be done before school starts in the fall of 2010. The other thing was to get him an evaluation for an assistive communication device, basically it's like a little computer with pictures he can push and the computer will say the word for him. We don't know when he will decide to talk so this might be a good option in the mean time. So in the end I got a bit of what I wanted and the school district got a bit of what they wanted and after all his only 3, we've got many years of this ahead of us!

HAPPY HALLOWEEN!!

Home Sweet Home

Just a quick note to let you all know that we made it home...finally. Our 6 day vacation turned into a 16 day trip complete with the last 4 days in a car. I don't want to do that drive again for a while! Milo's limit in the car was about 5 hours a day for the first two days by the last two he would have sat longer but the weather kept us in Kansas and Eastern Colorado longer than we would have liked. All in all we had a great time visiting our friends and Milo saw more pumpkins, horses and baby kittens than he thought possible. I promise pictures soon....

Vacation Extended

There is never a dull moment with Milo around! My little guy with a flair for the dramatic told me, an airplane full of passengers, paramedics and ER staff that he DOES NOT LIKE TO FLY IN AN AIRPLANE!! We were supposed to fly back into Denver last night but about 10-15 min into the flight Milo turned blue and had a seizure. Luckily there was a doctor on board, 2 actually, a trauma orthopedic surgeon and a rhumatologist. While Milo's issues were way of their specialties it was a help because people listen to doctors. Before I go any farther into this story I'll tell you that Milo is absolutely, completely fine and as ornery as ever. The flight attendant got out the emergency medical supplies and oxygen and Milo was much better as soon as he got some oxygen into himself. The pilot turned the plane around and we landed back in St. Louis where paramedics came on board on had me carry him out of the plane to the waiting ambulance. He was alert and mad and although his lungs sounded horrible I knew he was fine but since a plane made an emergency landing we went to the closest ER. By the time a doctor saw him his lungs sounded fine and he was his normal self. I called my friend Liz who had dropped us off and she turned around and picked us up again so we are back in Carbondale. Guess we'll be driving home :0) That was one "Milostone" I could have done without!

Lessons learned: 1) if Milo says "no" when asked if he wants to go on a plane, he means it 2) Sea Level + pressurized airplane cabin + rapid ascent does NOT work for Milo 3)Trauma orthopedic doctors have no clue about the airway--he was sure they would put his trach back in 4) Southwest Airlines was very nice about having to turn around, the flight attendants were quick and efficient with the medical equipment & made sure I had a drink & snacks if I wanted them before we got off the plane, all my carry-on luggage made it to the ambulance and the pilot came to make sure Milo was alright. 4) Milo does not travel well in the car at night, it took us forever to get back to Liz's house finally got here at 3am

Milo fell asleep at 6:30 tonight, he was exhausted. I'm hoping he sleeps all night and will be a happier guy tomorrow! We had a great week here and expect to be here though the weekend and the Pumpkin Glow at GreenRetreat. During this last week Milo had a pony ride and loves the horses from the miniture horse to the ponies to the big race horse, has seen more pumpkins than he ever thought existed, has been on several hay rides, has helped out with pumpkin patch school field trips and has fun playing with Logan & Trey. I'll post pictures when I can!

All Packed & Ready To GO!!

I think everything is packed. Well except for the stuff Milo needs tonight and first thing in the morning but all that goes in our carry-on anyway. I'm armed with a letter from the pediatrician about his medical equipment and prescriptions and will be looking for a female security person (Thanks Dawn & Alicia!). I have a backpack full of stuff to entertain Milo while we are at the airport and on the plane. We're leaving for the airport about 6:45 tomorrow morning. I know I'm excited to get away, Milo has no clue what's going on. I asked him if he wants to ride on an airplane and he shook his head "no" :0) If I get a chance I'll update while we are gone, if not I'll try to within a few days of getting back.

Here we GO!!!

In Just One Week...

One week from today in the early morning I will be dragging my boy (who will no doubt be crabby about the whole experience) though the airport. Navigating the airport & security with Milo, his carseat and carry-on luggage was a daunting thought but then I found this nifty contraption that will attach his carseat to my rolling carry-on and it becomes a stroller he can ride in and all this for less than $15...it's called theTraveling Toddler Car Seat Travel Accessory and I found it on amazon.com I tried it out the other day and it seems to work pretty well. I was a bit leery of Milo riding in it but it seems sturdy and he liked it.

Hopefully security won't be too much hassle. I do have to bring his liquid meds that are over 3 oz but prescriptions are supposed to be exempt from the 3 oz rule. I also have to bring his pulse ox and nebulizer machine. I don't trust checking these in our luggage, they could get broke or lost, so I'm putting them in our carry-on, I hope no one has a fit about that. Then there is keeping Milo in his seat on an airplane for 2.5 hours, that should be fun. I know he won't sleep but at least I can attempt to entertain him :0)

Oh yeah, I forgot to tell you where we're going! We are flying from Denver to St. Louis then driving 2 hours to Carbondale, IL to visit my best friend from college, Liz, and her family. They have 2 boys, Logan who is 5 years old and Trey is 2.5 years old. Trey is 6 weeks younger than Milo but a bit bigger. Here's a picture of Trey & Milo in May 2007

Milo was still in the PICU and the boys weren't allowed to be together but though the magic of photoshop we got a picture of the two of them together.

For the last few years Liz and her family have been working very hard at getting Green Retreat up and running. From the pictures I have seen it is a beautiful farm in Southern Illinois with cabins and houses to rent, space for conferences, stables to board horses, space for family reunions and lots more. They even have a pumpkin patch and are doing school field trips right now. Milo seems to love pumpkins so I think he will have a great time at the patch. Check out their website for a better description of all they have to offer :0) http://www.greenretreat.com/

So the next week will involve packing, organizing, trying not to forget anything important and all that jazz. Luckily we are going down to sea level so we aren't even bringing oxygen with us. That will be kind of strange but oh so nice. I'm afraid of what he will do when has more oxygen at sea level. He might not stop moving the whole week! This is also the first time we will be further than an "flight for life ride" from Children's Hospital and that makes me a bit nervous. Liz's mother-in-law is a nurse so that's comforting and they are only 2 hours from St. Louis where there is a very good children's hospital so I think I have all our bases covered.

Wish Us Luck!!!

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)

Deep Breath...Here We Go!

It is amazing how much power this small piece of plastic can hold.

It holds the power to save lives, it changes lifestyles & buys many people time until they no longer need it. Hopefully tomorrow this piece of plastic will loose it's power over our lives & Milo will no longer need his "little piece of white plastic". Yup 24 hours now Milo will be trach free as long as his airway still looks good. YIKES! What do I do with a child who breathes out of his face instead of his neck?

Some changes will be nice, no more lugging around a suction machine & emergency bag! Won't have to worry about him pulling his trach out, secretions getting dry & stuck in the tube, random things and dirty fingers being stuck into the tube & most of all no more noisy compressor blowing humidified air in him all night long. OK so the last one will be nice but I'm not sure I can sleep without "white noise" in the house. It's been over 2 years of listening to a machine at night. The other night I left it off of him (just put on an HME) and I couldn't fall asleep, I could hear his every breath and I concentrated on that, guess I'll get used to it.


Some things will not be so nice, our nursing hours will probably be cut drastically or nursing (aka a free nanny) will stop in a month. We have such good nurses who feel like part of the family. It will be hard to say good-bye when the time comes. The other not so good thing is that he won't always have an emergency airway. Having that safety net has been very reassuring over the last couple of years. After seeing your child struggle for every breath and sometimes not even breathing the safety of a trach is a relief.


So here we go down a new path on this journey. This afternoon we will go to the hospital & Milo will be admitted. He will be capped & observed overnight, then tomorrow morning at 9:00 he will go to the OR with his fantastic ENT doctor who will do a bronchoscopy to take one more look and make sure his airway is good. He will most likely come out of the OR with no more trach, a naked neck. I have to admit I'm concerned about him coming out of anesthesia without his trach. He is not the most pleasant child waking up from anesthesia and I'm afraid of how he will handle not having his artificial airway when he is stressed. If he makes it through that though I think he will be just fine :0) We will probably have to stay at least 24 hours after the trach removal to make sure he is doing well then we can come home.


A naked neck, I haven't seen his neck without something on it in 2 years, 3 months, 1 week & 4 days. I think he will look strange without it, at least for a little while. Most of the time when I look at him (or any kid with a trach) I don't see it anyway but it's just who he's been for so long. I also wonder how attached Milo is to his trach, I wonder if in some way he will miss it...


I have to finish packing for this fun (insert sarcasm) trip. Keeping a 2 year old who is feeling well & healthy entertained in a small hospital room for 2 days is going to be no walk in the park. Because he had MRSA he is not allowed in the play room or to wander the halls while he is admitted. Luckily we are going to the floor with all our hospital friends so hopefully he'll be distracted, and some new toys should help too :0)


Well, I'd better run. Your thoughts and prayers during the next couple of days would surely be appreciated. I'll try to keep you updated & post pictures of Milo's naked neck as soon as I can.

Playing Catch-Up

It's taken me a while but I finally got pictures from the 4th of July weekend posted :0) We went to Alamosa on the 3rd and came back on the 7th. There was so much to do and Milo was a trooper. The weekend wore him out though and he slept in until 10:30 on Monday morning! Here's what we did:

1. Annual 4th of July Parade in downtown Alamosa.

2. Played in the inflatable pool with his cousins at Grandma & Grandpa's house

3. Fireworks, until we got rained on then we sat in the car. Milo could have cared less about the big display but liked the fountains his uncle set off, was scared of the sparkler though

4. Church on Sunday morning

5. We went to Jasper in the mountains where Grandpa has property. Milo's first trip to the mountains he needed a little oxygen when he got upset but did pretty well for being at 9350 ft! It was beautiful & super green up there, the grasses were almost as tall as Milo!

6. Lunch with Grandma & Grandpa on Monday

7. Visited Uncle Gary & Aunt Gaye's farm, got to play on tractors and with some of his cousins.

8. Visited Great Grandma & Great Grandpa, there house is definitely NOT Milo-proof though...

9. Played in a great puddle in front of Grandma & Grandpa house :0)

10. Visited the horses of Grandma's friend Judy. Milo got to pet them and brush one of them. He thought they were great but likes chasing the poor cat more, go figure.

Phew, what a vacation!

I saved the best for last:

If you look really close you can see that Milo has finally decided to wear his nasal cannula for oxygen during naps and at night! I think this was his last hurdle before getting his trach out. Only 7 more days until that happens, YIKES!

PRAYER REQUEST

Last week a good family friend, Peg Russell, suddenly passed away. Her death has left gaping holes in the lives of her family and friends and the community as a whole. Today is her memorial service and I ask that you pray for her young son Quinn, her family & her many friends to find peace as they say their last good-byes this afternoon.

Peg touched my life in an amazing way. It was Peg who asked me if I would be interested in adopting a baby that hadn't been born yet, his mom was in foster care. That baby turned out to be Milo and Peg was named as his guardian ad litem until his adoption was final. Without Peg I wouldn't have Milo. Peg was the one who found a way to make his adoption final before the normal 6 month waiting period, she helped me to negotiate the adoption subsidy & when the county refused to pay it while he was in the hospital Peg represented us in legal precedings and ultimately got a judgement for the county to pay all the money owed. She didn't stop there, she pressured them until the money was finally deposited in my account 6 months later. She went above and beyond for us and refused any kind payment (well other than Starbucks). She was an amazing person, I will miss her.

Peg also brought another child into our extended family. She was guardian ad litem to another special needs little boy, Chase, who my cousins adopted several years ago. She was active in the community and I can only imagine how many families she personally touched in her life time.

Thank you for your prayers, they are greatly appreciated. Today will be a difficult day for many people. We are not venturing down to Alamosa for the memorial service. Milo & I just got back from our 4th of July trip to Alamosa last Tuesday and I think turning around and going again would just be too much for the little guy. I'll post pictures from our little vacation soon :0)

I Spoke Too Soon...

I should have known better. After announcing to the world that Milo's stomach problems seem to have resolved--they are back. He feels horrible, it's been over a week now. Retching, gagging, drooling, laying on the floor. That's not my kiddo, he's normally running, climbing, playing with toys and being a wild kid. We tried 24 hours of Pedialyte which normally "fixes" him but it didn't work. I called his GI doctor but haven't heard back. He had an upper GI study last week to see if he was refluxing and he wasn't but the radiologist did say his stomach was emptying slow, in fact we had to stay an extra 15 minutes to make sure the barium was emptying out of his stomach and it was. I'm suprised the GI doctor hadn't called with results, well kind of. It was good to have the study done while he was feeling bad, I think it might have been a better view of what is going on, maybe. Oh yeah, I learned that his mini g-button is NOT compatable with the Mic-key extensions like the website says. I forgot ours so we tried a Mic-key because it was supposed to be compatable but it wouldn't work so the radiologist rigged a feeding extension, he was so nice to do that :0) We've tried smaller volumes, thicker food, thinner food, giving it faster, giving it slower, nothing seems to be helping. I'm guessing that the GI doc will prescibe Reglan and hopefully that will help although last time we tried it, it didn't work but I'm up for trying anything at this point! Ugh...

Leaps & Bounds

I can't believe how much this kid is learning and absorbing all the sudden. He's like a little sponge right now. Developmentally he's soaring!

Speech Therapy: He learns new signs every day and although he "personalizes" them they are usually pretty close to the "correct" form. This week he has started to sign outside, turtle, movie, eyeglasses and probably a few more I can't think of right now. I think he knows upwards of 45 signs at this point! He babbles in sign language, it is very cute but has to be frustrating when I don't understand what he is trying to tell me. He is answering questions with sign language too. This evening I asked him where he trach cap was and he signed "train" so I found his little train in the living room window sill and sure enough it was hooked on the caboose. It is so nice to communicate with him better. Even more exciting, he is trying to say words and letter sounds. Last weekend he brought me a ziploc bag that had some toys in it and pointed to his mouth and said "open", it was far from perfect but I sure figured out what he meant. His speech therapist always points to her mouth to get him to pay attention to what her lips are doing when she speaks so it was so cute to see him point when he was trying to talk. Now I know when he is trying to say a word rather than just babble because he points to his mouth.

Physical Therapy: He is doing so well that PT has been scaled back to only twice a month. He walks on uneven terrain and keeps his balance, runs, climbs and is jumping a little bit too. His main issue is with the way he sits. He "W" sits, as best I can describe it it would be like sitting on your knees then letting your feet move to either side of your bum and sit on the floor.

Milo (and Owen) demonstrating the w-sit

Looks terribly uncomfortable. He learned to do this early on and it's a hard habit to break. Initially it was easier for him to keep his balance and he was more stable sitting this way. There are two camps regarding w-sitting. One is to try to correct him every time we see it and get him to break the habit, this is what his physical therapists have always done. We saw a physical rehab doctor last year and he said not to worry about he will correct himself in time before any damage is done. It does stretch out the knees and his hamstrings are very tight. Personally I'm taking the middle ground, there is no way I can correct him every time he does this, I would have to hoover over him 24/7 but I do correct him as often as I can and we are working on stretching out those hamstrings so sitting "criss-cross" won't be so uncomfortable for him. He hates stretching, who can blame him. Oh yeah, on the climbing front, Milo has learned how to climb out of his crib. Yesterday he was supposed to be taking a nap and I found him with his knee on the top rail and he was holding onto his oxygen tank for leverage. Yikes! Good thing we have a video monitor to keep tabs on the little monkey. Looks like the toddler bed might be in our near future.

Sensory Issues: He's getting better, a couple of weekends ago he hauled a poor worm around until it expired. Poor worm, he sacrificed his life for Milo therapy. We were all surprised that he would touch a slimy wiggly thing like that. He was so cute, he'd put it on the sidewalk and push it along if it wasn't moving fast enough for him. He also got good at making mud pies although they were pretty runny. He still doesn't like slimy things that stick to his hands though, we're working on it.

Milo's Worm

Making Mud Pies, note the dirt on his face :0)

Feeding: Still not eating anything by mouth :0( He does like to play in my food though and loves to feed me, his stuffed animals and his toys. I'm not too worried about this though, after his trach comes out we'll tackle this. On a very positive note, his g-tube feeds are going much better. Almost all of the retching has disappeared. I asked his GI doctor if we could try Previcid for reflux and it did the trick. I had to play around and find the right time of the day to give it to make sure he didn't retch after any of his feedings. Typically his breakfast gave him the most problems and it turns out giving it to him before bed is what works best for him. I feel bad it took so long to find out what the problem was, we tried Zantac last fall and that didn't work so we figured it wasn't reflux. Previcid just works differently although it does the same thing and looks like it works better for Milo. I just hope it keeps working because the last week has been wonderful.

Respiratory: After only a few days Milo learned to tolerate doing his nebulizer treatments though a face mask rather than his trach. The first time I tried it he was confused and kept pushing it down to his trach and looking at me like I was crazy. The mask is cute, it is a dinosaur face :0) He sits very nicely now and will put the mask to his face by himself, we are working on the elastic band so we don't have to hold it but that's just icing on the cake. Next week we'll tackle the nasal cannula, I don't think that one will go as smoothly though :0)


He has been taking his cap off as usual but yesterday he pulled his trach out with it. His nurse had just said it was time to change his trach (he gets a clean one every 2 weeks) and went in the next room to get the supplies when he yanked it out. So with his trach on the outside of his neck I chased him to his nurse then took him into his room where we typically change his trach. She attached a trach tie to the new trach and I took the old one off. I was weird to see his neck for more than 2 seconds. She slid the new trach in with no problems although he didn't like it so much. The reassuring thing is that he had no color change, so problem breathing and even crying when he saw the new trach he did just fine. I think it's time to get the thing out, I'm still a bit nervous but I'm getting better after seeing him without it for a few minutes. By the way, this is not the recommend way of changing a trach. Ideally it's only out for 1-2 seconds :0)

THE DATE!!

We finally have the date for Milo's decannulation (trach removal)! Hopefully on JULY 23 Milo will have a naked neck :0) The plan is for him to be admitted the evening of the 22nd and be observed capped while sleeping, on the 23rd he will have yet another bronch and if all looks good his trach will come out. He will stay at least 24 hours after decannulation to make sure everything is alright. I'm keeping my fingers crossed that this will all work out and he does well without the trach. I'm getting more comfortable with the idea, I'm about 85% sure he will be fine. I won't say 100% because I learned a long time ago in this journey there are no 100 percents. I think Milo is about ready for it too. Today he pulled his trach out twice while trying to remove the cap. Once we were in the lobby of the hospital waiting for his prescriptions to be filled and the other was in our backyard. Neither time did he struggle to breathe, turn colors or seem like he cared in the least. I will admit that the 2nd time his trach came out we weren't vey fast at getting it back in. I wanted to see what he would do, and he passed with flying colors. It reminded me of when he would pull himself off the vent and we took our time hooking him back up. I've decided that removing the cap is just a control issue for him, it's something that he can control in his life. If he gets mad he pulls it off and throws it just as far as he can. He also likes to play with it :0)

Now I have to get him to wear a nasal cannula for his oxygen while sleeping and do his nebulizer treatments though is nose and mouth rather than his trach. These are 2 big steps for him. In fact the doctors offered to remove his trach mid June but I just didn't think we could accomplish these 2 things by then. The other day I tried his nebulizer with the face mask and he kept pushng it down to his trach and looking at me like I was crazy and didn't know what I was doing. Ugh, the nasal cannula will be much harder though. Little prongs going up his nose and blowing air is not something he enjoys. We've been using a neonatal cannula since his nose is so small and I've cut the prongs off but he wants nothing to do with the thing. Wish us luck!!

Summer's Here!

Wow, it's been hot here the last few days! Milo has been enjoying playing outside in the water. He loves to play in his water table pouring water from one cup to another, he can entertain himself for hours if ya let him. Of course he gets soaking wet in the process so when his lips turn blue we know it's time for a break to warm up :0) Milo also doesn't mind walking through the sprinkler. The other day we were in the front yard watering flowers and Milo started to run off so I sprayed the hose across the sidewalk assuming he would stop rather than get wet but he kept on running and giggling. The next day I turned on a sprinkler in the back yard and he would walk right though it. His water table was right on the edge of the water and stood there playing even with the water sprinkling in his face.

Milo has been tolerating the cap on his trach much better these days. He is allowed to have it on "all waking hours" and for the most part he leaves it on all day. He knows he isn't supposed to take it off so he will spin it around every now and then. Today he took it off and put it back on a couple of times. He is ornery though and will take it off and throw it just as hard as he can for no apparent reason at all, we have lost quite a few caps this way. He also grabs it off when he is upset and crying. I don't think he "needs" it off when crying it just a habit at this point. Sometimes when we can't find the cap we will ask him where it is and he will go get it, especially if he gets to go outside when it's back on. I've also caught him pulling it off and playing with it, putting in a dump truck or tractor. I guess it's a toy that's always with him...

We still don't have a date for decannulation (trach removal) yet. I have a call into the doctors to remind them so hopefully we will hear something very soon!

See Ya Later Ventilator!

Today we had a going away party for the ventilator :0)

I gathered up all the bits & pieces that go along with it for the respiratory therapist to come pick up. Slowly we are reclaiming our house from all the medical equipment..

When I was disassembling the circuit from the ventilator and heater Milo had to check it out, he tried to put it back together, it was too cute...

I made the vent a going away sign and we blew party blowers (quietly of course because loud noises still scare Milo) to mark this historic event.

Milo waved bye-bye to the ventilator just before it took it's last roll out of the house. At 2:30pm on Wednesday May 6th 2009 the ventilator left our house for destinations unknown. I'm sure it will be put to good use though.

A Treacherous Path

Spring has sprung and along with the flowers & spring snow storms has come several medical procedures for Milo. I'm calling it his preventative maintenance :0) In March he had an ECHO (ultrasound of his heart) to check on his co-arc repair and to try to get a look at his pulmonary arteries that were so very small at birth. His pulmonary arteries were what I was most curious about. When he was born he had a Left Pulmonary Artery Sling that caused his trachea to be very small and both the left & right pulmonary arteries to be VERY small and the doctors HOPED they would grow at all and hopefully fast enough to catch up to the proper size. No one has looked at his pulmonary arteries very closely since then. Turns out because of the trach his pulmonary arteries can not be seen with an ECHO. I talked to a cardiologist and it was decided that he should have a heart cath to get a real good look at them and if necessary they could try to stretch them out with a balloon or if they were still very tiny a stent. On the positive side his co-arc repair was great, they never would have known he had one. A few weeks later Milo was scheduled for a heart cath, he had one when he was a month old but not since then. He was originally scheduled at 8am on a Friday but didn't end up having the procedure until 4:30, never again will I let it happen that late on a Friday. At the same time he had a bronchoscopy to check on his airway & make sure things look good. Of course his normal ENT couldn't be there for the bronch so she sent a new Fellow to do it but explained to him what Milo's airway looks like (cuz it's very far from normal) and the Fellow assured me he understood. The bronch was done first and out came the poor Fellow, he was a few shade whiter than when he went in. He said there's lots of scar tissue and he would need that removed as soon as the regular ENT could. I sat him down and showed him pictures of Milo's last bronch and I could see the guy physically relax. I just know he couldn't figure out how Milo was breathing at all after looking at his airway. He said "Oh yeah, that's exactly what it looks like now." OK problem solved, Milo's airway looks great, for Milo at least. Milo has broken in another new Fellow! On to the heart cath, it seemed to take forever and several hours later the cardiologist came out to talk. He brought pictures with him to explain what he saw. He got to the pictures with this Pulmonary arteries and explained that both of them had small areas of narrowing but that they didn't seem to be causing any problems. They did try to balloon them open a bit. The left one did alright with this procedure but it didn't seem to help a whole lot. Totally different story with the right one, as soon as they started to inflate the balloon Milo's heart & respiratory rate fell, his blood pressure in his lungs sky rocketed, NOT GOOD at all. Luckily as soon as they removed the balloon he returned to normal, phew. I asked about his left artery and if it was kinked since it didn't form in the correct place, when he was tiny I was told that he might have to have a stent if it got kinked. He said it was not kinked but took a "treacherous path" of turns to get to the left lung, it looked good. A treacherous path, how fitting for Milo, I think that sums up all of Milo's medical adventures! He stayed one night on the cardiac floor and we were out the door the next morning. With all this behind us the question became, When is the trach coming out? Today we got closer to that answer. Last week we saw the ENT who felt it could come out in June/July as long as his trach was capped all day and he doing well. Today we saw the pulmonologist who wants to get a date nailed down and "get that thing out". The doctors will get together and come up with a date that both of them will be around to the big event. He will probably have to be admitted a day before so they can watch him and cap him during sleep, after the trach is out he will stay for at least 24 hours maybe longer. I know this is a good thing but to be honest, I'm scared. Last time he tried breathing without the trach he wasn't very successful at all. I know he'll be better at it now, but will it be good enough? I think I'm attached to the trach...
Good news, the ventilator gets to leave the house, it has been gathering dust for the last 6 months, I think we will throw it a going away party. I'm defiantly not attached to the vent...

Eating, or rather putting food into his belly, continues to be a challenge. Luckily he is growing though, he has gained about 5 pounds and grew 4.5 inches in the last year. He has good days every now and then but most are not so good days. He retches & gags, his belly hurts, he drools, his heart rate goes up and lays on the floor. He was constipated for awhile, thought that might have been the problem but nope. He had a barium enema to make sure his anatomy was normal, it was. That was a messy procedure though. Not sure where to go from here but hopefully the GI doc will have another guess, another thing to try...I feel like we are living a bad episode of Mystery Diagnosis where the person lives with problems for 10-15 years before figuring out what is wrong.

I think that's about it for the medical update...

Another Milostone

In the past when Milo was sick he wasn't just a little sick he was dramatic about the whole thing. He didn't get a cold, he got pneumonia. He didn't get a little infection he got a blood infection. He didn't get a little scar tissue, he got enough to almost close off his airway. He didn't get strep throat, he got antibiotic resistant bacteria growing in his trachea. He doesn't have seasonal allergies, he has major food allergies. The nurses (and probably a few doctors) in the PICU called him the Drama King and were on the hunt for his crown.

This week Milo got his first normal, run-of-the-mill childhood illness--a double ear infection. The doctor asked if he was allergic to amoxacillin. I told her he had never had the "little" antibiotics before, he always went for the ones reserved to fight big nasty infections that could be life threatening and usually got them in combinations of 3 at the same time. She laughed and said to watch for hives and call if he got them. Well, so far so good. No rash, much lower temperature (although not normal yet) and back to his old self. He felt so bad yesterday he fell asleep on the floor of the exam room at the doctor's office, poor guy.

I'm Dreaming Of A White....EASTER?!?

We went to Alamosa for Easter and woke up to snow on Easter morning. It snowed most of the day. In fact it snowed more than it did at Christmas. Go figure...

The Easter Bunny braved the snow and freezing cold temperatures to leave a few treats for Milo. Note the pink pig, the bunny knew just what to bring.

The Bunny had to hide the eggs in the house this year. Milo was interested for just a few minutes. He had an egg in each hand and was done :0)


We had a great Easter Weekend. Our adventure started on Thursday when we went to Colorado Springs to welcome my Grandparents (Milo's Great-Grandparents) home from Texas where they spend the winters. We met them & my aunt at the airport and went to my aunt's house where we spent the night after a nice dinner with more aunts, uncles, cousins & little cousins too. Milo played with the little girls and had lots of fun. Friday we continued on to Alamosa and arrived there just after lunch. We relaxed in the afternoon and did a bit of shopping. I finally found some jeans to fit my skinny little dude, Wranglers of course, size 1T slim with an adjustable waistband. Finally pants that stay up. Check out how cute they are!
Saturday we went to Uncle Chad & Aunt Melissa's house to dye Easter Eggs with Brett, Dylan and Owen. Milo had a blast. He ended up with one yellow hand and one green hand. His skin dyes better than the eggs! Later that afternoon we dyed eggs with Grandma too. This time he prefered to have a blue hand...
Grandma & Milo

Owen very proud of his yellow egg.

Dylan & Brett working hard.

Check out these Easter Cuties all dressed up and having fun hunting eggs...

Owen

Dylan

Brett & Milo