Saturday, November 20, 2010
Why Shutterly you might ask? I have always recieved wonderful quality in a timely fashion from them. My favorite Shutterfly project was a photo book I made about Milo's medical story. I wanted to remember the whole story and be able to share it with others. The book I recieved was wonderful! So professionally printed and bound. So far I have ordered 3 hard back copies, one for Milo, one for me and one for my mom. I am contemplating making another one that is geared toward preschool/Kindergarden age for Milo. I also made some small soft back photo albums for my nephews and niece of their vacation time with us. They were a hit! Shutterfly makes it easy, choose simple path and they will do most of the work for you or fully customize the book yourself (my choice because I'm a bit of a control freak). I have also made calendars and photo mugs for Christmas presents that have turned out beautiful. They also have greeting cards for about any occasion. I especially love the cards who's proceedes benefit the American Lung Association, Heifer International, and LIVESTRONG. I just saw graduation announcements too, for everyone from preschool graduation to college graduation!
Oh and if you have a blog and would like to earn free holiday cards from Shutterly click here to learn how. Even though I wrote this post to earn some fabulous free cards, everything I have said is absolutely true :0) I really do love Shutterfly!
Tuesday, November 2, 2010
|Eeyore at the Zoo|
|Jen & Faith (Snow White), Janay & Milo (Eeyore), Tina holding Noel (Elmo), Lily (mailbox), Dustin holding Landen (horse) & Marissa (Minnie Mouse) and Jeremy|
|Milo the kitty|
Wednesday, October 6, 2010
Friday, September 10, 2010
When the little blue bird tried to make noise and that horrible stridor sound came out of him I immediately said "that bird needs a trach, he can't breathe!". It was a feeling from way down deep that caught me off guard when I heard that noise. Then the little sneezed out a feather and all was fixed, if only a sneeze would fix kids who sound like that :0) Now I don't know if the people that made this video thought of this and did it purposefully or not but WHY is the bird with breathing issues BLUE and the smallest one too? Just made me realize how much my world has changed in the last 4 years...
Sunday, August 22, 2010
Wednesday, August 18, 2010
Last week we had the opportunity to meet his teacher and see his new classroom. I was prepared to go into this school year fighting for Milo's needs. After 1 hour with his teacher I am hopeful that no "fighting" will need to be done. I can't tell you how relieved I was/am. This year's teacher, Ms. R, is a much better fit for Milo than last year's teacher. We were able to talk about Milo's medical issues, allergies and where he stands developmentally as well as behaviorally. He was not happy about the visit and clung to me, cried, and screamed for the majority of our meeting but finally settled down and played with a few toys. Ms. R is absolutely fine with Milo having a comfort item with him in the classroom, something last year's teacher was definitely opposed to. She assured me he would get the help and attention he needs to learn to follow the routine and be re-directed when necessary. Most importantly she seems excited and up to the "challenge" that Milo will bring into her classroom. He will have the same speech, occupational & physical therapists as last year but will have a new Special Education teacher. The Special Ed teacher is new to this school & has also taught deaf/hard of hearing children so she is fluent in sign language. After the big stink about Milo's lack of accessible communication I put up at the end of last year I find it no coincidence that the new teacher knows sign. Ms. R also knows a bit of sign language and both feel it is a good bridge for speech delayed kids as well as thos learning to speak English as a second language. That being said it is amazing how much Milo talks now. He tries to say most words and much of the time will sign at the same time which makes it easier to understand what he is trying to convey. I'm sure being in a classroom full of peers will spur his language skills even more.
Monday, August 9, 2010
While doing some internet research on SPD I came across a book called "The Out-Of-Sync Child" by Carol Stock Kranowitz. I looked for it at the library but there was a fairly long wait list for it so I ended up buying it and it was definitely worth the price. I read the whole thing in less than two days! While reading the book and watching him I could see some red flags and while I don't think he has a severe form I really hope some Sensory Integration therapy can help. His pediatrician gave us a prescription for an Occupational Therapy (OT) evaluation including sensory and luckily we were able to schedule the eval pretty quickly and I received the official report the end of last week. At the end of the assessment the OT wasn't gung-ho on the sensory diagnosis but sounded more confident in the written report and has recommended therapy both regular OT and sensory therapy. The catch is that Children's Hospital has at least 4-6 week waiting list for therapy especially at the main hospital and 4 days a week of preschool limits our availability too. The outlying clinics could probably get him in sooner but they are all at least a 45 min drive. A friend of mine has recommended another facility that provides therapy so I will check into that option soon. "The Out-Of-Sync Child" (and it's sequel) has examples of helpful activities and exercises to help SPD kids but there is such wide range of sensory issues I think he needs formal therapy and then we can integrate some activities into our daily routine. I guess adding OT will not be the end of the world if it helps him in the long run.
So that's what's been going on at our household the last few weeks along with some fun outings, road trips, house guests & getting ready for school. Milo starts preschool again next week already...where DID summer go?
Sunday, July 25, 2010
Wednesday, June 30, 2010
All is right with world as long as Milo can play outside! I saw this on Sesame Street this spring and found it quite fitting for my little nature boy. I can't help but smile when I hear this song. The days he can't play outside are very long and difficult for both of us. He has been enjoying water play in the sprinkler, the water table & his kiddie pool as well as digging in the dirt. He drives his tricycle around, he can almost reach the pedals :0) He likes being outside by himself too. Yesterday he made it clear that I was not invited outside with him so I took to peaking out doors and windows to make sure all was alright.
Saturday, June 26, 2010
He was admitted to the hospital and ended up staying for 4 days. He needed oxygen longer than normal after surgery and sounded horrible. He was rattely, like he needed to cough secretions up but he just wouldn't cough very much. His pulmonologist, Dr. D was the attending that week so get got a little more attention than normal to fine tune his treatments and try to keep his airways clearer.
By the 4th morning Milo was ready to go. He found a pretty blue button with the word "code" on it and pushed it, everyone came running. He was amused :0) they discharged him shortly after that. In May he went back for another bronch which showed the scar tissue had grown back somewhat despite the drug used last time. Milo was treated to more laser but this time he was able to come home that day. He continues to sound like he needs to cough most of the time. His normal secretions get stuck on that scar tissue and he has a hard time getting them up. He is scheduled for another bronch mid-July, we'll see what's going on then.
Last Monday Milo had his annual heart catheterization. I'll have to say this procedure is one I dread, almost more because of the recovery than the procedure. He has to lay flat on his back for 4 hour afterward. Ever since he was tiny he knew everything was alright as long as he could sit up after a procedure, an IV stick, surgery, trach change, etc. We wrestled him for about 1.5 hours before I nearly demanded they find a drug that would work to chill him out. They had already tried the normal versed, valium and dalaudid which worked for about 10 min each. Finally they gave him a combination of dalaudid and benedryl which worked and he finally rested for most of the rest of his 4 hours. At the 4 hour mark he popped straight up on the bed from a half awake state and there was no holding him down after that. The results were a mix of good and not so good. He still has narrowing in both of his pulmonary arteries (they take the blood from the heart to the lungs to get oxygenated) and they did not respond to the balloon dilation (I sence a theme here). The good thing is that his heart is not really suffering from it. The pressures are higher than they should be but not danerously high so we have time. Ideally they would like to put in stents to hold those arteries open and he is big enough for that now. The only problem is that when they tried to dilate the right artery his breathing was affected. The theory is that the artery then pressed on his airway (bronchus) in his right lung and collapsed it. The doctor recommended that Milo have a CT scan to figure out his unique anatomy and then a plan can be made. He said that should be done in the next 6-12 months so while it is important this be fixed, we do have time on our side.
Yup bones, this is new territory for us. In December Milo saw a genetic doctor to try to figure out if he has a "syndrome". I have mixed feelings about this but that's a subject for a post all on it's own :0) I took him to this appointment confident they would find nothing and boy was I wrong. Turns out he has funky bones, like the technical term? Seriously he has a form of skeletal dysplasia also know as dwarfism. Now if he follows his current growth pattern he will be around 5 feet 4 inches as an adult so I hardly consider that dwarfism. It was also noted that he has osteoporosis so he is now on rather large doses of vitamin D so his body can use the calcium it is getting. Milo has been refered to the new Skeletal Dysplasia clinic at Children's Hospital but they only see 4 patients a month so I suspect it will be several months before he is seen. This clinic is comprised of several specialists (probably all the remaining ones Milo hasn't seen before) that try to put everything together to come up with a more specific diagnosis and medical treatment plan. If they can't come up with a diagnosis they will send his information on to another doctor (in California I think) who is apparently the guru of skeletal dysplasias. I still think he is a uniquie kiddo and doesn't have a "syndrome" or maybe it's a new one they will name after him :0)
I am proud to say that Milo's stomach really hasn't been an issue for a while now (knock on wood). He had the stomach flu in February and some mysterious something 2 weeks ago but other than that he's been doing well. He continues ot take his daily reflux medication and I'm not messing with that! We still avaoid certain foods that we know or suspect he may be allergic to. He is starting to eat by mouth now (that's a story for another post) and all those allergy foods are hard to avoid.
Eczema may very well be the most annoying ailment we deal with on a daily basis. He is itchy a lot of the time. When it got hot his skin flared up pretty bad but we quickly got it under control. The oral steroids he is taking for his airway also help the eczema. His arms look 1000% better than last year and his legs are clearing up as well. The red patches on his cheeks are gone most of the time but if they do appear they are less noticable. Recently I took him off his daily dose of zyrtec and he has had no increase in itching. He still gets an antihistamine at night but I am trying to wean him off that as well because I don't think it helps either. He still does need to be moisturized twice a day and every now and then we have to use a steroid ointment but over all it's not as bad as it could be.
Well this has been a very long post, thanks for hanging in there with me. I do have lots more to tell ya and hopefully I'll get to it soon!
Wednesday, March 24, 2010
We woke up to lots of snow this morning which closed the schools so Milo has now had his first official "snow day"! Of course we were supposed to have a meeting at the school this morning to go over his IEP so that was a no go either. We had a great day playing in snow in the morning and again in the afternoon. Milo is so much better about touching the snow with his hands. I also learned that he likes to eat the snow, now to teach him the color yellow and to not eat yellow snow. By late morning the sun was starting to peek out and it was quite warm so I didn't bother fighting with him about a coat or mittens. He did have snow boots and fleece lined overalls on so he was quite warm :0) He was so cute trying to figure out how to use the snow shovel. Every now and then he would stop what he was doing and sign "snow" and try his best to say it. He is trying so hard to say words but most of the time all that comes out are the vowel sounds so it takes me a minute to figure out what he means but it is definately a step in the right direction.
Thursday, March 4, 2010
Monday, January 25, 2010
The house is cleaned, the floors steam mopped & the bathroom sanitized so now it is time for me to shower and get to bed. Since Milo went to sleep not longer after his dinner I expect to be up in the wee hours changing sheet tonight :0)
Sunday, January 24, 2010
Off to clean up and then hopefully bed time for me!
Saturday, January 23, 2010
He's so cute in his little undies, even the smallest size I could find (2T/3T) are baggy on him. Some I even have to roll the waistband and they still sag. Socks on the kiddo are not such a great idea either :0)
Friday, January 22, 2010
Must try it out! No falling in here.
Well I'm off to re-read my 40 page e-book once more for inspiration. Wish us luck! I'll try to report in over the next 3 days to let you know how it's going and if it was worth the $24 e-book.
Tuesday, January 12, 2010
Tammy & Milo May 2009
First of all I want to thank our two wonderful nurses who had been with us since the day Milo came home from the hospital. Tammy & Shirley you guys are the best, thank you so much for all your help! Having a medically complicated kiddo requires a lot of vigilance, add in Milo's activity level and boy does it make for a busy & some times crazy day. Hauling around Milo & all his "stuff" was no easy feat in the beginning. I don't think I would have made it through the last 19 months without you guys, or at least not as calm and rested as I was :0)
On the other hand there a lot of things that are nice about not having nursing care. First is that I don't have to get written doctors orders for every little change in medication, food, therapy, etc. I feel like I don't have someone (the agency not our in home nurses) watching over my shoulder second guessing every decision I make about Milo like when he is sick enough to go see the doctor or if he really needs to go to the ER for falling and bonking his head on a toy and getting a eighth inch cut on his scalp. I know that all of this was to cover the nursing agency in case something major came about but it is nice to know that all the decisions are mine to make without having to worry about what the agency thinks about my decisions. And ya know what? It make us that much more of a "typical" family although still far from normal.
As I mentioned earlier we haven't had any nursing since just before Thanksgiving and things have been going quite well. There was some adjusting to do though. I learned to take a shower at night while Milo sleeps because leaving him to the house for even a few minutes is no good, did ya see the picture of him in the sink in the slide show? I was in the bathroom for less than 2 minutes! I always left Milo with a nurse to do the shopping, not so much any more. He goes where I go and he's learning to like it, slowly. He hates riding in shopping carts so the seat belts are my best friend, his worst enemy. Now that he is in preschool 2 days a week I can hopefully get most of that stuff done while he's at school so I don't have to torture him so much.
Today was a significant day in life with Milo. Another day I couldn't wait for nearly two years ago. Today went by with little fan fare, it was a normal day. Now we just have less paperwork in the house and have reclaimed the shelf where the chart & paperwork "lived".
Wednesday, January 6, 2010
January 6, 2007
Still In The Hospital ICU Step-down Unit
January 6, 2010
First day of Preschool
Milo's first day of preschool went about as I expected. He did not like having to follow directions or participate in group activities. I stayed with him today to make sure he would be alright (breathing wise was my main concern) and although he threw himself on the floor several times he did okay, not great but okay. His favorite time was play time of course, he played nicely with the other kids and was visited by the occupational therapist. It was cold and snowy today so no outside play time which was a bummer because he has been talking about the playground for days. They did go down to the gym but he refused to do anything but cry, poor guy was just out of his element and didn't know what to expect. He sat nicely for snack time although he didn't eat a thing, he did play with his snack and had a sip of water. At the end of school the kids gather on the carpet one last time. Milo sat much better this time :0) The teacher draws a picture and the kids "help" her write a sentence or two about the picture. Today she drew a picture of Milo and he recognized himself, it was a proud moment. Their story was: Today we have a new friend. His name is Milo. Then it was time to go home. School lasts all of 2 hours and 45 minutes and he goes 2 days a week, Wednesday & Friday. I think in about 3 weeks he should have the routine down much better. So Friday will be an interesting day. I have decided to just drop him off and see how he does without me there. The teachers will have their hands full that's for sure! I tried to keep as low a profile in the classroom as possible. When he couldn't find me he cried but I imagine he will be fine...eventually :0)
Milo's least favorite part of the classroom:
The Circle Time Carpet!
Monday, January 4, 2010
I have a few hopes for this year. I hope that Milo will find his voice just a little more. It can be verbal or with a communication device, as long as he can tell me what is going on in that little head of his. We've been struggling with tantrums lately that I can best attribute to not being able to communicate and be understood. He's doing a great job with sign language but he can not communicate with the general world around him. I am very grateful for the amount of communication that he does have though :0) I really really hope we can get his eczema under control, by far it has been the most irritating aspect of his medical stuff. I hope that he will learn to eat even just a little. Really it would be nice but I'm not pressuring this at all. He is more interested in eating or at least playing with food which is a step in the right direction. He requests to be in his highchair to eat cheese or whipped cream, it's definitely progress. I hope he blows the socks off of the preschool staff! He starts school on Wednesday, I can hardly believe it. At his evaluation he didn't feel like preforming the tasks he was asked to so I think it was not a great snapshot of his abilities. I hope he gets the hang of school and follows their routine instead of insisting on doing his own thing.
I know there are a few medical things brewing for Milo this year. In the spring he will have to have another heart cath so they can get another good look at his pulmonary arteries and how the narrow parts are affecting his heart. There can be several outcomes 1. Everything is great no further intervention needed right now 2. They can try to balloon out the narrow areas which they tried last year and Milo didn't tolerate well on his right side. 3. They can put in stents to help hold open the arteries but he is kind of young for this and they would have to be expanded and possibly replaced as he grows and again he may not tolerate this either 4. This is the biggest and riskiest--another open heart surgery to cut out the narrow areas, really it isn't a surgery on his heart but that's the best way to describe it because it will require the incision down his chest, being put on a heart-lung bypass machine and his sternum being wired back shut again. I really hope this doesn't need to be done! The other medical issue that is being looked at is his genetics, to see if he has any genetic syndromes that might explain all his abnormalities. So far they haven't found anything but he has a few more blood tests and x-rays that I haven't heard back about. The genetics doctor is concerned about him being short, me not so much. If they find something it won't change Milo at all it just might explain a few things and give us some things to look for as far as growth and development. I've been kind of defensive about his genes which is kind of strange seeing how none of them are mine. I think it's because I don't want to hear that something else is "wrong" with him, he is perfect just the way he is.
Whatever 2010 bring us we will take it head on and thrive just as we have for the last 3+ years!