Summer flew by

     What a weekend... what a summer! This has been an eventful summer for our little family. We went to Nashville and got good news. Josh and I went to Florida, leaving Ami for the first time for more than 24 hours. And we had another wonderful birthday. Plus a bunch of little firsts. It's been nice to finally have a handle on this disease, and be able to do things because we aren't afraid any more.

     Birthday weekend started off with pictures with the wonderful Erica Turner. I'm excited to see what they will look like this year. Saturday was the party at Dan Kinney park. I love that park, and the party went very well. Ami ate a whole slice of pizza, and the icing off a cupcake.  It was unbelievable. He got lots of fun toys, some new clothes, some movies, and Mickey Mouse. I got him a giant Mickey Mouse balloon that is taller than he is. That thing goes every where he does. Ami will grab Mickey by the hand and drag it all around the house saying, "Come on, Mickey." Sunday we went to Branson, and walked around the Landing. Then that evening we went to a Springfield Cards ball game. He didn't understand what was going on, but running round in the grass and people watching was great.

     I think Ami is starting to recognize when he needs to go potty. Friday he was grunting, so I asked him what he was doing. He told me "Potty" so we went, and he went. Then last night, in the middle of the episode he had, he said potty again and this time he peed! I'm getting excited, but I'm also afraid it's going to be very hard finding underwear small enough for his tiny tushy.

     We took the bottle away a week and a half ago. The first three days were the worst, but since then it's been great. Dr. Moore put him on a higher calorie Pediasure, and increased his daily caloric intake. To better manage his calories we started a schedule. His eating, tube times, and naps are all scheduled. It seems to be working out so far. She increased his calories so much that it would be impossible to manage everything without one.  Hopefully we will see some more growing.

    Last night we had a huge episode. I'm going to call it that because I don't know what else to call it. Ami woke up screaming in a way I have never heard him scream before. He seemed to still be asleep, but he had his eyes open and was semi responsive. Then he would become completely responsive, but then start screaming again and be less responsive. He would stare through you, but also cling onto you like his life depended on it. He was shaking, and crying. It lasted about 10 minutes. I finally turned the hall light on and Josh set him on his feet, and he started calming down. He then said he wanted to go the potty. I wasn't sure if he was going to throw up, or if he wanted to take a shower. Josh set him on the potty and he peed. Then we sat on the couch for 30 minutes and watched a show. He went right to sleep, to wake up again in an hour screaming again. This time it took much less time to calm him. I don't know what was going on, but I hope it never happens again. It was horrible. I was truly scared that something was really wrong, and I don't scare that easy anymore.

     I'm sad to say good bye to summer, but this fall is going to be a  lot of fun! 

Nashville

Well we did it. We drove 16 hours in 2 days and survived. Not something I want to do every weekend but it wasn't horrible. We got our answers, finally. Amadeus has NEHI. NEHI is the only ILD that is not fatal and does not require a lung transplant. He is on the mild side, since he doesn't require a lot of oxygen. The doctor was pleased to see how we were dealing with the disease. She would like to have a couple of more tests done, but they are not major tests. She would like for us to do the sweat test again for Cystic Fibrosis. If the test comes back elevated like it did before she wants him genetically tested for all the different types of CF. He has already been tested for the 60 most common types, but there is 1600 known types of CF. She would also like a chest x-ray done when he is well. All of his x-rays have been when he is sick, and she wants to know how much damage is really there. According to his CT scans he has a lot more diseased area in his right lung than what is typical for NEHI. She isn't sure why. We talked about research. I told her that I would be happy to submit any of Ami's info for research. She said he is an unusual case but not uncommon. About 1 in 4 NEHI cases have results like his. She told us to continue using the inhaled steroids. She told us to treat his symptoms even if it doesn't go along with typical NEHI treatments. She did not know how much longer he would need the use of oxygen. She said that everyone is different, and it is based off of how well the child is or isn't doing. We also talked about things like daycare/preschool and future children. She said that by 3 or 4 she would be okay with introducing him to a school setting, but be prepared for him to become very ill. She told us to look into the school carefully. To make sure they understood his disease and how to properly manage it. She also said to look into their cleaning practices. Which are all things I had planned on doing. She said that because he has NEHI not to let it keep us from having more children. As many families that have multiple NEHI children also have just one affected child. She said typically it is easier the second time around because you know what to look for and how to deal with it. With all that being said that is still not a risk Josh and I are willing to take. I can't put another child through all of this again. Even though Ami has NEHI he will NOT out grow this disease. The damage to his lungs will always be there. He will always breathe differently. He will get winded quicker. He may always need oxygen. He may develop asthma. This is something that he will have for the rest of his life, and will be a constant struggle for him. Because so little is known about NEHI no one knows for sure how this will affect him later in life. He goes to see his pulminologist and pediatrician next Tuesday the 12th. That is when we will know when they will be doing the other tests. Until then more waiting.

Busy, busy, busy

     I feeling like everyday is blurred together. I can't believe it is mid-May already. We've been busy with doctors, therapists, and everyday life. I am trying to get everything prepared for Nashville. We finally set a date, June 4th. I booked our hotel today. I am still waiting to hear back from insurance to make sure that this appointment has been approved. I still need to talk with the oxygen supply company to get tanks for this trip. They are on my shit list right now, though.

     Ami is doing very well. He has completed physical therapy. Occupational therapy is going well, and he is catching up quickly. We haven't taken him to the doctor lately, so I'm not sure how big he is now; he looks like he has grown a lot. He has 7 more teeth, and he will be done with that horrible experience! Before it started getting hot he seemed to be doing well with less oxygen so that's exciting to hear.

     He has turned into an independent, stubborn toddler. He tells you "No" and throws big fits when he doesn't get his way. He loves to go outside, and go for walks. He is speaking really well. He can count to 13, and he knows most of his shapes and colors. He knows animals and their sounds. He still gets confused on the horse and the cow. He lays on his belly and puts his face in the water during bath time. He will also stick his face in the spray of the shower. He is getting pretty good at brushing his teeth, and he'll wipe his mouth off on a napkin. He is growing up way too fast and I HATE it.

     I have begun birthday plotting. I know the theme; I just need a place. I'm really not sure what I am going to do. I think I will most likely rent a place. I really want to rent the Ozark Community Center, or maybe the Chesterfield Community Center. He loves water so much that it would be a crime to not have a water related party again. But... these types of places get pricey and you can only have so many people. Ami's family is HUGE. I have his birthday pictures booked, and I'll start on decorations and things like that soon. My other dilemma is he doesn't like cake. He doesn't like sweets in general, so I'm not sure what to do. 

     I will post again after we see Dr. Young in Nashville and let everyone know what she said.

Life is Good

Today life is good.

     Tuesday I found out Ami is finally in the 5% in weight! That is huge for him. For a year now he has been in less than the 3%.

     Today I found out that the ILD specialist has accepted his case. She hasn't gotten all of his info yet, and when she does we'll set up a time to go and see her. Her name is Dr. Young and she in at Vanderbilt, which is in Nashville. She is very interested by just the little she has read, and then from what I have told her. She did explain his biopsy to me. She basically said that it's junk. From the THREE slides she has gotten so far; the biopsy wasn't taken correctly, and then it wasn't sliced and put on the slides correct either. She is hoping more slides come in. She explained the correct way to do all of it, and I know that is not what they did.  Nice to know it was a waste, but you live and learn. She didn't have enough info yet to be able to give a more definite answer, but she does see some red flags. It will be an office visit. If she wants more tests done she typically has them done at home, and the results faxed to her.If she tells me Ami has NEHI, awesome. If she tells me Ami doesn't have NEHI, awesome. I just want to know that we are treating and managing this disease the correct way.

I hope tomorrow life is still good................

Spring Has Sprung!

     It is March 13th and it is supposed to be 80 degrees today. The trees are blooming, the grass is turning green, and last night we could hear frogs! I am more than happy so see winter go. It's such a stressful time for us; it brings up a lot of anxiety. I am so happy to be able to report Amadeus got through cold and flu season with 2 sinus infections and 1 ear infection. I will gladly pay $1,500 every month for 5 months to not have RSV. The only hospital stay was a scheduled event that lasted for as long as they said it would. Even though we were at the doctor on average once every 2 weeks I'd say this was a very successful winter.

     It's been nice to be able to take him out in public again. We took him to the circus on Sunday. He was a little freaked out at first, but it quickly grew on him. The clowns were very scary, but the elephants are the coolest thing EVER. He kept saying "Mom, please, please" and pointing at them. I see visit to the zoo in our near future. We've taken him out to eat with us and shopping. I really want to take him to Jump Mania. It's an indoor bounce house play center. Now that he is so caught up on his gross motor, and his tube has healed so much I think he'll really like it. This spring and summer are going to be so fun.

     He had his OT evaluation today. Think it went pretty well. From all of the questionnaires I filled out I feel like he does have some areas of need, but I don't think it's going to be major or hard to correct. He also had PT today. He is still on target, but needs to keep working on walking down stairs. He also has started to walk on his tip toes. When I told his therapist about it she said that is normal for children who have sensory issues. The last 2 times Ami has gone to speech I have let him go back with the therapist alone. He has done so much better. He is talking and participating more. He responds and mimics so much more. She is very impressed with his language skills.

     Something that I have noticed about Ami is that he has a lot of the issues Josh and I have/had. Josh and Ami both have extreme oral sensitivity.They both have to chew on something all the time. Ami and I have texture issues. We both are very tactile. We want to know how everything feels. We touch everything. We like the same textures. I walked on my tip toes a lot when I was younger. Good thing is we know why he is doing what he is doing, and we are getting him help early.

     Last week at the doctor he weighed 21 lbs 11 oz. He gained 10 oz in 8 days. I was very impressed. He goes back on the 20th for his 18 month check up. I don't know why we need to an official one. He sees her all the time, and she always goes every aspect. But that's fine I'm always up for a weigh in. We have changed his diet and feeding patterns again. Hopefully this one will work out, and we can get into a better schedule of eating. I haven't noticed a change in his eating since starting the appetite stimulant, but I've been told that it can take up to 30 days.

     Josh and I had an awesome anniversary. We went to a comedy show, and then out for sushi. Josh has been having a much better time at work so that's been nice. He also got a good review this year and a nice raise. We are joining a gym. By the way nothing good comes from looking up your BMI. Just saying. I am happy to see spring and looking forward to a much less stressful future.

18 months

Amadeus turned 18 months on Sunday. He is such a toddler now. When you look at him you can hardly see that little baby any more. He is doing so well in physical and speech therapy. His feeding tube looks really good and he is handling it like a champ. I'm so proud to be his mama.I took him for a weight check today and he weighs 21 lbs 1 oz and the doctor is very happy with his progress. We don't have to go back for a month. She also prescribed an appetite stimulant to help out.
Josh and I took him to the park this past weekend. He loved it. He climbed the stairs and went down the slide all by himself. I can't wait for the weather to stay nice so we can take him more often. Josh and I have talked about get him into some sort of play group this spring. He wants to play with other children so bad. Its so hard to tell him he can't and move him away. He is very sociable and doesn't seem to shy away from playing with other kids. I hate keeping him away, but I'm very happy to have avoided a major illness so far this year.
This Friday is mine and Josh's 4 year anniversary. My parents are supposed to keep him over night on Saturday. This will be the first time anyone had kept him since he had his tube put in. My mom is pretty nervous.
I got a new tattoo last week. I got a pin wheel on my left shoulder blade. Yes it hurt but I love it. I chose a pin wheel because its the symbol the chILD foundation uses. I wanted to have a forever way of raising awareness and showing Ami how proud I am of him.

Update on Amadeus

Wow a lot has happened the past couple of months. I am very pleased to say that everyone stayed healthy enough to be able to go to the holidays this year! I am also pleased to say we have avoided the hospital so far; urgent care has been a different story. Right after Thanksgiving we took Ami to urgent care. He had a cough, green snot, and a slight fever. He had a chest x-ray done and the doctor said that it looked better than the last 3 he had. Diagnosis was a bronchial infection and gave us antibiotics. Then the stomach flu struck, and it was horrible this year. Then about a week later his snot went from clear to green in 3 days. Took him in and he had a sinus infection, and another antibiotic was given. He was better for about a week. The 30th he had his tongue clipped and everything went great. That afternoon he spiked a fever that we couldn't get rid of. We took him to urgent care on the 31st and he had an ear infection in his left ear, and another antibiotic was given. Josh took him for his weight check on Friday and she believes he also has a sinus infection again. The antibiotic he is currently on should take care of the ear and sinuses.
     That brings us up to date. So Friday we got some interesting news. We have lost the battle with weight. Ami is getting a feeding tube. As much as we have tried to avoid this situation, I do believe it is for the best. The nutritionist wants him to eat 1300-1400 calories a day. 600 should come from food and the rest from the Pediasures he drinks. On a good day he eats maybe 300-400 calories plus Pediasures. We see the surgeon on Tuesday about the feeding tube. Really that's all we know. We don't know what kind he is getting,, or how long he will have it for. I have a ton of questions for the doctor. It's going to be an interesting experience. The reason Ami needs so many calories is, one, because we are try to play catch up, and, two, because of how he breathes. Ami weighs 19 lbs and 7 oz. Most kids his age weigh at least 22-25 lbs. He also breathes twice as fast as a child his age should. He takes about 60 breathes or more a minute. Plus he has been sick and it takes a lot of energy for your body to fight an illness. I think that is why we have seen a weight drop in the past several months.
    On a brighter note he is doing great every where else. He can now drink from a cup without any leakage. He can squat down in the middle of the floor, pick something up, and stand back up. He can stand up in the middle of the room from a sitting position. He has about 20 words and is trying to make 2 word sentences..Still only 8 teeth but the "I" teeth are on their way. He is trying to feed himself with a spoon. He is becoming very independent and is pushing all of his boundaries. He is interested in the potty, especially the toilet paper and flushing. He has starting climbing. He is getting very big very fast. I know that's what I always say but geez he is changing a lot right now. He is also at my favorite age. He is getting to be really fun with his little attitude and his new found mobility, but he is still very baby like and wanting to snuggle. Like his doctor said he is too smart for his britches. He has never met a stranger and is always happy. Everybody loves him where ever we go. The doctor also says he lungs sound better than they ever have; the breathing treatments must be working.
     I will post another update after Ami gets his feeding tube and we get the hang of everything.