1st Day Of Preschool

Today Milo started preschool for this school year and I couldn't have been more proud of him. He walked from the car to his classroom door (although he did try to go to his classroom from last year) and waited patiently for the teacher to let the children in the classroom. He walked right in and was met by his speech therapist, Steve, and never looked back. It's a new room, a new teacher, new kids & a new routine so he has to adjust to the new routine but I bet he'll get there before long. When I got there to pick him up the teacher called is name to meet me at the door and it took a minute for him to come. What a change from last year when he was charging out the door the minute it opened or cried sitting on the carpet if a teacher attempted to keep him where he belonged. His teacher said he had a great day! He walked back to the car holding my hand and most amazing of all only had 2 small temper tantrums between getting home and bedtime. Milo is in afternoon preschool this year which I was initially hesitant about but after thinking about for a while I decided that it just might work better. The afternoons is when he needs more structured activities and preschool fits the bill. I think he was a bit tired after school today :0)

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.

At our meeting last week the teacher explained that on Friday a folder will go home with that weeks art work, newsletters, therapy notes, etc. I love that idea but had one problem. Milo's backpacks are all too small to fit a standard size folder in. He has several and I tried them all. Standard size backpacks are way to huge for his little body to be able to carry. I scoured the stores and the Internet and couldn't find any backpacks that were in between toddler and school-age size. Finally I did find a pattern (http://www.made-by-rae.com/) so I could make one, it was toddler size but had instructions to enlarge it to fit a standard size folder. It turned out great! It is probably just a little big for him but is lightweight and definitely manageable.

They are easy and kind of fun to make. What do ya think? Could I sell these?

"The Out-Of-Sync Child"

In the end of July Milo had another well child visit to his pediatrician. He is growing and gaining weight! Although he is still small for his age he is 35.5" inches tall and 29 pounds. I expressed some concern about Milo's behavior (mainly his temper tantrums) and the pediatrician suggested that we have Milo tested for Sensory Processing Disorder. He is definitely high risk for SPD (high stress during pregnancy, birth trauma-not breathing for him, early surgery, lengthy hospitalization). Milo will have tantrums out of the blue with no rhyme or reason, he can't seem to recover from these by himself. He has no fear when climbing on things and he climbs on everything, very frustrating for me. He is always on the move, he never stops! Circle time was the worst for him at school. I've taken him to story time at the library and as long as I'm in very close proximity to him or have a hand on his leg he will sit otherwise he would be up running around. He also throws everything, sometimes out of frustration and sometimes because it's "fun" and today was a day of throwing EVERYTHING he could get his hands on. He wakes up in the middle of the night and can't get back to sleep on his own. I've watched him on the video monitor trying to go back to sleep for an hour before getting up and coming to my room. He changes position, bangs his foot on the mattress, etc. If he lays down with me he wants my arm over him and falls right to sleep. I moved him into a full size bed from a toddler bed and it has nearly eliminated him coming to my bed but he flops around all night long and takes advantage of every square inch of his "big boy" bed and I know he wake up frequently. Some days he is so wound up that I put him in the car and go for a drive. I don't know if it's the confining carseat, the motion of the vehicle or both but it calms him down. Chasing him all day is exhausting and not much gets accomplished around the house.

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?

2 New Milostones! No, Make That 3!!

"Mama, Look"!

It clicked, he finally got it. It's like turning on a light switch when he gains a new skill. He has figured out talking. "Mama, Look"! Those are the words I heard clear as a bell from the backseat of the car a few weeks ago.

He saw a playground and wanted to stop and play, unfortunately it was a daycare so we couldn't stop. He tries to say most words now and is successful at many of them. Of course it's like any kiddo learning to talk, maybe only a few people really understand but he is getting better by the day. His sign language vocabulary has increased too. If he won't attempt to say a word he will sign it & sometimes he signs and talks which really is a big help. The other day I asked his speech therapist if she knew the sign for pillow, she didn't and couldn't find it in her big reference book either. The next day I remembered to look it up on the computer and did the sign once while I though Milo was playing in his room. He obviously saw me because yesterday he was signing pillow as he carried a pillow around the house all day. Oh, did you see the lollipop in the pictures above? Occasionally he will put new food type things in his mouth! The lollipop didn't last long for any one attempt but he went and found where he left it a couple of times that day. He will now eat crunchy rice crackers too. I think he ate half a package today. Then there is the good old standby, shredded cheese. Talking and eating...2 very important milostones.

1st Decanaversary

Last Friday, July 23 marked one year without a trach! It's been an interesting year and not without it's bumps in the road. I am happy to report though that Milo had his 4th bronch in 5 months about 10 days ago and magically all the offending scar tissue has disappeared! I think Dr. K was just as surprised as I was. Well surprised might not be the right word, anything is possible with Milo and we both know that but we definitely were not expecting that good of an outcome. We are back to the "call me if you need me" status with Dr. K, now that I know what "needing her" looks like I am confident with that directive. Now we are on to conquer more pressing developmental issues...more info to come on that topic!

Milo's Summer Theme Song

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.

The Nitty Gritty

I know it has been way too long since I've updated the blog...I was reminded that there are still snow pictures and it is now officially summer. Well, there's lots to say, so much in fact that I don't know where to start. Most of the time I just give up after staring at the computer screen for awhile but today I'm going to take a stab at getting something written. At least part of it anyway, the medical part, which is probably the most boring but has the biggest impact on daily life. Deep breath, here we go!

Airway

When I last left off Milo was scheduled for a bronchoscopy in early April. That bronch got moved up to March 17th and I was given about 15 hours notice. It was a whirlwind of a night and definately gave me less time to stress over it. This bronch showed severe narrowing of his trachea near the bottom where there is scar tissue from his very first surgery when he was a week old. Here's the picture the surgeon gave me, the black spot is the opening and it should be much bigger, the white above it is the offending scar tissue. You can also see that his trachea is more a tear shape than round like a "normal" trachea.

Dr. K was able to use a balloon to open up the area. It was very stubborn and took inflating the balloon 7 times to get any results at all. Inflating a balloon will stretch the scar tissue and cause little tears which should then firm up and hold the trachea open. Here's what it looked like after the balloon dilation, it's a little red and irritated but the opening is much bigger now:

This scar tissue has been there for basically his whole life and it had been stable for over 2 years and now it is causing issues again. This part of his trachea is well below where a standard tracheostomy tube can reach and so far no talk of re-traching. Pulmonology also joined in and took a look deeper into his lungs and got a sample of secretions to culture to make sure there was no deep infection brewing, and there wasn't. Milo didn't appreciate this part so he was admitted overnight for observation. Here he is finally resting in his room.

In April he went back again for another bronch to check on that scar tissue and not suprisingly it had grown back. This time Dr. K used a laser to remove the tissue and put in some medication that is supposed to keep scar tissue from forming. Here he is waiting in pre-op playing with his toys. It really is hard to keep him enteratined in that room.
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.

He came home with a CPT vest that shakes all the junk loose from his lungs and airway so it is hopefully easier to cough out. It does help some but not as much as we had hoped. Here's a video of him in the hospital.

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.

Heart

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.

Bones

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)

The Belly

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.

Skin

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!

SNOW DAY!!!

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.

A Not So Gentle Reminder...

This week life gave me a not so gentle reminder that Milo's medical journey is not completely behind us and he still is medically fragile. On Tuesday Milo had a routine pulmonology appointment, he hasn't seen the pulmonologist since last September I think. I didn't expect much at this appointment, pretty much just a yup everything looks good and we're not making any changes to medication until respiratory season is over. Well that's not even close to what happened. The appointment wasn't until 4:30 so we ran some errands in the morning including a haircut for Milo then he had speech therapy at 1:15. I told him we would go to the park before his doctor appointment since it was so nice outside. I noticed that he was starting to wheeze a bit as I was getting things together to leave so I decided to give him a breathing treatment to head off whatever was going on. It usually takes about 20 min to see the full effect of this medication so we hung out for a bit before we left. I have noticed that at times he does seem wheezy and then he will be better in 10 min or so and sometimes he breathes a little fast for a bit but then returns to normal so I did want to ask the pulmonologist about this anyway. He was still sounding pretty wheezy when we left but I figured he'd settle out of it in the car on the way. He played for about 10 min and I decided it was time to head to the hospital because he still sounded bad and was using his neck muscles to breathe. We took our time and picked up a prescription at the hospital pharmacy before heading over to the clinic but we were still 15 min early. We checked in and very efficiently saw the nurse. The doctor came in shortly after that (we usually wait 30 min to see her) and was obviously concerned about what she was hearing. Now by this time the wheezing was considerably less and let me assure you he was his normal active curious self the whole time. In fact she was so concerned she almost admitted him to the hospital but ultimately decided to send him home with a whole bunch of steroids and had us get a chest x-ray before we left. I called yesterday to get the results of the x-ray and it looked alright, no pneumonia. Today I found out that he will have a bronchoscopy with both the ENT and the Pulmonologist on April 9th. I'm not really looking forward to that because once again life could unravel depending on what they see. The results could be anything from it looks fine to something is definitely wrong. Personally I'm hoping it's just an allergic reaction to something so I have limited his diet even further and watching what is going on around him. It could be mucus accumulating in his abnormal trachea so I'm giving him extra water to try and thin them out. It could be that the scar tissue is getting worse or that his collapse (malacia) has worsened it instead of getting better as it should. Oh and not to mention the heart cath that he needs this spring/early summer to see what needs to be done about his pulmonary arteries. I feel like I've been transported back in time 3 years when these were the exact same issues we faced. We're definitely in a better place since Milo can breathe effectively on his own but the fundamental issues remain...some day this will be resolved, I hope...