Decision

We have been busy! The fall season is upon us and Luke is getting back to his old sickly self. We made it 9 days into October before our first hospital visit. I think last year it was sooner than that. Way to go Luke! Wednesday morning I was awoken by Luke screaming and sounding awful because he was having trouble breathing. After trying various things here at home I decided enough was enough and rushed him to the nearest ER, which happened to be IU North. I broke several laws on the way there, so to any cops I passed...sorry. They took excellent care of him there. They diagnosed him with croup, and after 6 breathing treatments we were on our way home. He is doing much better now. He just sounds horribly congested in his sinuses. Matt is convinced he needs to "hock up a loogie" and has been trying to teach him how.....

I finally decided the new therapist wasn't a good match for us and made plans to have Luke evaluated at another place. Per our First Steps Physical Therapist Sharon's recommendation I called the pediatric rehab people with St. Vincent's. Luke's evaluation was today. I loved this place the moment I walked in! The lady I met with was super nice. She said she agreed that Luke needed more therapy and had many other suggestions. She wants him standing. This should help develop more muscles that he will can use now and later and also will help his spine (which is something I never thought of). She said kids who can't sit/stand can develop scoliosis from not being in the right position. The wheelchair topic came up again. At this point I think I am ready for Luke to get a wheelchair. I am trying not to think of it as the "end all be all" of his life and that far ahead, but instead as what will make him happy. She made many good points as to how a wheelchair will make him happier, and eventually keep him in line with his peers once starting preschool. For the standing, she wants to get him braces for his feet (he curls his toes and rotates his feet) and braces for his knees (to keep them straight), along with a "stander". I was ready.....lets go!
Then, insurance happened.
When trying to make the appointments necessary to get all this in order, I was informed by the lady that does all the scheduling/insurance stuff that per our insurance company, Luke had "exhausted" his funds for any more physical therapy and equipment! We haven't gotten a damn thing from them! I was flaming mad! I spend the rest of the day on the phone with various people and still have not gotten any answers. I have to work tomorrow, but will be back on the case Wednesday.

Luke is still being awful most of the day and especially in the afternoon/evening. He doesn't want me to put him down and screams at the top of his lungs if I do. I have been letting him cry, but it doesn't seem to be working.

That is all for now :)

"Normal"

I am having a rough time lately. I used to love the weekends so I could spend time with Matt and Luke and do family fun things. What I would call "normal" family things. Going places, doing things, etc. However, because Luke is Luke we aren't able to do these things. He will either not enjoy it (therefore putting more stress on me) or not even know/understand what we are doing. I was telling Matt today that I wanted to be able to do these "normal" things with he and Luke. He told me that Luke isn't "normal" and I needed to stop thinking that way. BIG HELP! My way of coping is to sleep all weekend. Matt hates that, I don't blame him. In my head I think that if he had to deal with Luke for two days like I do on a daily basis, then he would understand. He doesn't.

Lately Luke is having a fit when we go out to eat. I have no idea why. We usually end up leaving most of our food uneaten to go home because no one wants to listen to Luke scream in a restaurant. I am done going out to eat for a while. Part of the problem is that Luke can't sit in a high chair/booster seat etc. I have yet to find anything that is designed for a kid like him. So we end up holding him. I think that is what he doesn't like. He can't "play" around with his food like he does at home. I don't know.

Luke officially started his new therapy last Monday. It was the same girl we met with for the evaluation. I am not sold on this yet. This therapist doesn't seem to care. She just acts like this is her job, she will put in her hours and be done. I need someone that gives a damn. She doesn't really talk to me and when I do say something I usually get one word answers. I voiced my concerns to Luke's therapist through First Steps and she suggested I go somewhere else. I am looking at other options. 

I have done about all I can do around the house for now. We can't afford to do much more. The house next door to us FINALLY sold (been on the market for almost 5 years) so that should help us when we want to sell ours. 

Anyway, I am done rambling....

More Therapy

First, let me say thank you for every one's kind words of encouragement since my last post. I knew you all cared, but wow! I feel good knowing I have plenty of people supporting me through this difficult journey. 

Not much has changed with us since my last post. We met with another Physical Therapist (PT) on Monday to have Luke evaluated for more therapy (at the suggestion of his developmental pediatrician). Currently our therapists come to the house on Wednesday and Thursday. This new therapist was at Methodist Hospital. We got there and she seemed very nice and knowledgeable. She spent 45 minutes with Luke and he of course wooed her with his charm :) She did think he needed more PT. I knew that would happen. I don't disagree but I also hate the idea. We will start seeing her on Monday starting in 2 weeks (she has to get it through insurance). This means that every day I am off work, Luke has therapy of some kind. My life is supposed to revolve around my child, not my child's therapies! 

Luke is becoming your typical toddler as far as behavior goes. He is starting to throw fits. Because he is so immobile we do carry him around a lot, but we try not to. Lately, if we put him down in the living room on the floor (where he plays) he starts throwing a massive fit. He cries soo hard and loud. I know I need to just ignore it and I do. But there are times where he is gagging himself with his forceful crying and then it has to stop. I know he is frustrated because he can't move around like he wants to. I wish I could help him....

My depression is about the same. I see Dr. Stone about every 2 weeks. She is helping me to focus on things that don't involve taking care of Luke, as that is wearing on me and stressing me out. My friend Meg said I needed a hobby. I agree, as does she. While I love to read, that makes me tired which is something I am trying to avoid. Dr. Stone suggested that I use this extra time to work on our house. Ideally, we need to sell it and move to a place more suitable for Luke and his growing needs (and again "ideally" for our growing family). However, in order for us to get what we need out of this house, some work needs to be done. So I am taking this idea and running with it! I am currently repainting the garage door (we really need a new one but can't afford it), after that I am resealing the driveway, and then staining/painting our deck in the backyard. That should keep me busy for a while.  

Luke and Daddy :)

Update

Well, it has been a while since I have posted anything on here. It has been suggested to start it up again as a way to discuss all that is happening in our lives. So here goes.....

First, Luke....he is about to be 21 months. I can't believe we will soon be celebrating his 2nd Birthday! I love him to pieces and can't imagine my life without him. He is doing well. He still isn't sitting/crawling/walking yet. We see physical therapy and occupational therapy weekly. He hates therapy, but it does help him. We recently met with some equipment people at Riley to discuss his needs. We ordered a bath seat (since the one he uses now is an infant seat and he will soon bounce out of it) and some foamy things to help position him when needed. We looked at and discussed wheelchairs. This was heartbreaking for me. I have always known that Luke may need assistance with walking, etc...but this made it all hit me front and center. It was hard to look at it, all I could picture was him sitting in it helpless and sad. We decided that a wheelchair wasn't needed yet and we will revisit it next year.
Luke's Likes.....
1. Food: The boy can't get enough. Now that he pretty much eats what we eat, he wants to all the time! We love having him try new things and seeing some of the faces he makes is priceless.
2. Walks: Daddy and Luke go for a walk just about every night (weather permitting). He is so content when out walking.
3. Talking: Now that he knows how, he does it all the time! We may not be able to understand him all the time but that doesn't stop him! Current words: Bye-bye, hi, mommy, Luke, night-night, thank you, truck, no, ba-ba, book, ball, Ellie (elephant toy)

Luke's Dislikes....
1. Being left alone in a room. Just don't do it.
2. Waiting for his food. It better be ready when you put him in his high chair or he will scream!
3. His glasses, he has a love/hate relationship with those.
4. Shoes. I try and put them on him all the time to keep him from curling his toes!

Recently, I decided it was time for me to go see someone to talk about my depression/anxiety. It has been getting worse for a while. Matt is a great husband/daddy, but sometimes he just doesn't get it. I feel like the an awful mommy because while everyone else wishes they could stay home from work with their kids, I am the exact opposite. I HATE staying home with Luke. I love going to work and wish I could work more. I am constantly worrying about money and how we are going to do this or afford this. I am worried Luke won't ever walk, and that upsets me. This is just not what I imagined for my baby. I wanted his life to be amazing and great. Not hard. Matt hates that I am so depressed because I want to sleep all the time when he is home. It is all really starting to build. So about three weeks ago I met with Dr. Stone here in Indy and have been seeing her just about once a week. She has had many great suggestions, one of which was to post more on this blog. She can tell that I am not one to tell everyone all about my emotional needs. She is hoping that by doing this people will see the support I need, because she knows I won't ask.

I am going to try and post more from now on!