My baby isn't a baby any more

I can not believe how fast the last 3 years have flown by. Ami is no longer a baby or a toddler, he's a kid. He learns so many new things everyday.  He is very smart.  I wouldn't be surprised at all if he is reading when he's 4. I hope his love for learning continues for a long time.  This kid is going places.
I'm sure you all know that he is going to be a big brother.  He is very excited about it. He was dead on when he told us the baby was a sister.  Josh still isn't too keen on having a girl but there isn't a whole lot we can do about it. I emailed the specialist yesterday asking her a bunch of questions. I asked if this baby has NEHI as well, will she present the same way Ami did. I also asked if there are any special things we should do once she is born. I asked if she had any suggestions for nursing since that was such a huge issue for Ami. I got a long email back, but the just of it was they have no idea.  They now believe NEHI is an autosomal dominant gene. Which means that it is a dominat gene carried by one parent.  This means that each child has a 50/50  chance of having the disease.  She also told me that every child is different so there is no way of knowing how she might present with the disease. She may have a more severe case or a more mild one. She told me that if we notice rapid breathing or retracting we should start testing but not automatically assume she has NEHI. She said she wants all of the same tests ran just not the lung biopsy. That's soooooo many things to test for. That's a lot of blood draws. That's putting her under for bronchial lavages, and CT scans. It's a lot to watch a little tiny baby go through. I'm not excited at all. She also suggested having more frequent weight checks. I'm having a lot of anxiety about it all. I want so much for her to be healthy.
We are going to be staying in our house for a few more years. When Ami was in the hospital so much, and having all of the tests done, we had to live off our credit cards. We also got sent to collections a lot because of the enormous bills. All of that tanked our credit. We are finally seeing some light at the end of the tunnel, and hope to have our credit back in 3 years or so. 
Josh got a "promotion" at work and really seems to be enjoying it. He is now in charge of all the ordering they have there. He's pretty much second in comand. He's starting to understand the stresses of being the boss man.
I am planning on going back to school for spring semester.  I still very much want to open up my own center. I want to get a degree in business management and marketing.  I have worked at enough centers to know that if you don't have a good grasp on the business side of daycare then you aren't going to make it very far.
Life is busy and crazy but it goes on.

Holy Two Year Old Batman

     Big thanks to my mom, who brought to my attention it's been a long time since I have written in my blogs. 

     Wow a lot has happened since August. Lets recap: Ami started getting sick at Halloween and stayed that way for the next six weeks. At the end of November or beginning of December we took him to Silver Dollar City so he could see the Christmas lights. Very cool stuff. Christmas went really well. We were able to spend the weekend with my grandparents in Eminence. We made it to just about every family gathering. There was the feeding tube incident Christmas morning; but what holiday season is complete for Amadeus, without a trip to the hospital? He is also completely done with his therapies! Thanks Nana. We couldn't be where we are today without you.

     We just recently took the rails off of Ami's crib. (He has been sleeping at the grandmas' houses in a big boy bed for quite a while now.) He loves it. I love the fact that he hasn't figured out he can willingly get off of it. The first two nights were rough. He fell out once each night. Now he has a mesh rail thing on one side to keep him in.

     He is growing up way to fast, and I have a love-hate relationship with it all. I love watching him learn new things, and get so excited about the littlest stuff. He is starting to express his love to us. He is so smart, and he wants to learn. He is starting to come out of his comfort bubble, and is realizing how fun this world is. I hate the huge fits in the middle of Walmart. I hate seeing him so socially awkward around other children. I hate the days he just lays in his bed talking and kicking his feet on the wall instead of taking a nap AND then he is horrible two hours after you finally let him get up and the rest of your night sucks. Yes I do know that was a huge run on sentence but jeez. Josh and I joke that this is the crap people don't tell you about when your going to have a kid. Everyone who dares to go through all of this more than once is crazy and my hero. I could never do it. Most of all I hate seeing the little glimps of "kid" coming out. There are times where I realize that I am having a full conversation with him! He wants to do everything we do, and he wants to do it all by himself. He is realizing he has a choice in certian decisions. The toddler moments are disappearing. He's almost three! WHAT?!? These past couple of years have flown by. Next is kindergarten, and that moment will get here just as fast as this moment has. I hate it.

     Medically, 2012 was awesome. He went to the hospital twice, and once was scheduled. Ami has had his feeding tube for a year now. In that year it has been changed three times, twice because it fell out. He went to urgent care a couple of times, and the doctor way less often. He is now on the growth cart and, is curving! He is eating so many more types of foods I never thought he would do. He can skip, and jump several times in a row with both feet off the ground. I could almost bet by this time next year he is starting to read. 

     Being a mom to this amazing little boy is the best thing ever. 2012 was a wonderful year, and I am so excited to see what 2013 has in store for our little family.

    

    

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.