Wednesday, December 30, 2009
Thursday, November 19, 2009
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!
Saturday, October 31, 2009
Wednesday, October 21, 2009
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!
Tuesday, October 13, 2009
Here we GO!!!
Wednesday, October 7, 2009
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!!!
Monday, September 21, 2009
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.
Friday, September 11, 2009
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.
Saturday, September 5, 2009
Sunday, August 30, 2009
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!
Wednesday, July 29, 2009
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.
Monday, July 27, 2009
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
Thursday, July 23, 2009
Wednesday, July 22, 2009
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.
Wednesday, July 15, 2009
Friday, July 10, 2009
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)
Monday, June 29, 2009
Thursday, June 11, 2009
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)
Wednesday, June 3, 2009
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!!
Thursday, May 21, 2009
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!
Wednesday, May 6, 2009
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.
Tuesday, May 5, 2009
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...
Wednesday, April 15, 2009
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.
Monday, April 13, 2009
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
Brett & Milo