Its a CP thing.

New Blog at His Label is Superman!

Big Changes

Hey Everyone! With a new year and new goals around here Luke has made a change to a new blog...

His Label is SUPERMAN! From now on this is our new blog so make sure to follow Luke from there for now on.

Thanks, Jordan

Ick

Let's start off this post with a little caution. Don't read while eating...

Okay, now let's continue. VOMIT! OH how it bothers me so much. I know it is just a part of being a mom. Your child gets sick and you get over it and clean it up. However, since the G-tube placement Luke has taken it to a new extreme. I have now learned that no matter how gross it is, it's better if Luke just pukes on me if I'm holding him. This way my floor isn't dirty and there is less clean up other than the washing machine. His dad on the other hand, can't handle that. He has resorted to running with Luke to the bathroom...leaving behind a trail and wall splatter. I'll take the change of clothes over that mess.

Don't think that vomit is an everyday occurrence, however it can be weekly and maybe more than once a week. It is a very precise game with play with Luke's feedings. We take into consideration the amount the doctors would like Luke to receive, the amount Luke's belly might allow, the time between feeds, along with other variables like being sick. No day is exactly the same. I hate to say it, but I can't even explain to someone how I actually know when or how to feed him. I can tell someone time and amount, but I things could change and his feeding should change. Even Jonathin asks when, how much, and what to feed him. I know if he is snotty like he is now, we can't feed him formula. He is left with juice or pedialyte. The amount can be different depending on the time. It also can change depending on where we are. I'm not going to pump him full if we are out and about.  Why you ask....VOMIT. This kid can puke anywhere. It can be 3 hours after eating and he can still have a good shot. After he eats, Luke has to sit for a good 30 minutes. The older and more interested he is, the harder it is to keep him sitting.

We have looked into reflux, but that didn't get any where. I am now hoping with the CP diagnosis we can get some where. As much as a pain the G-tube is, it is the only way I can get something in Luke. Even if he is not feeling well. It is a fine line that we walk with Luke and his nutrition. Hopefully Luke can get over this little sinus issue and we can have a few clean days soon.

THE DIAGNOSIS

Life has been busy the past two months. We've doing a lot of work around the house. We have celebrated Luke's 2nd birthday. I've been swamped with school work as I finally finish school. Luke himself has kept us on our toes the past few weeks and months.

In May we were finally able to have the MRI done I have been asking for. The results were what I figured and planned on...severe bilateral periventricular leukomalacia (PVL). In non-medical terms, there is dead areas in the middle of his brain. All I have ever been told is that therapy is the only option to help treat Luke. I was never given outcomes, Luke's life was a big unknown. I don't like the unknown. I'm a planner. I am also a realist...don't sugarcoat things for me. Instead of just getting the PVL diagnosis I wanted more. I want answers to why things are the way they are. I want someone to tell me why? Maybe it's the medical background, maybe it's the fact that I've been next to Luke everyday of his short life watching him fight. I want someone to tell me what we're in for, and specifics at that. I wanted a neurology consult and diagnosis. Today I finally got what I was looking for.

After a discussion and exam with the neurologist she granted us the diagnosis of a mild case of cerebral palsy. Why do I say "grant?" I might be an odd person, but that is what I needed to hear. For the past year I looked into this diagnosis. The Luke's mannerisms and difficulties fit along with the diagnosis. I just wanted someone to back me up. I also needed the diagnosis to get Luke all the funding and help that he will need now and in the future. I know many people would say just having a child is so expensive. Try having a child that has special needs. Yes we have insurance, but we live on one income and the bills are still there and more larger ones are coming in the near future. We can take all the help we can get.

More than the insurance and funding issues, I needed the diagnosis for my own sanity. When Jonathin and I found out we were expecting, we had such big dreams for our son. Please don't think we are now completely depressed and disappointed, because Luke won't live up to our dreams. They were exactly that..."our dreams." Every parent has them, now we move to our new reality and dreams...to walk unassisted, run and play in our backyard, to go to a restaurant and eat a meal off the kids meal, tell me when he hurts or when he is hungry, sit in the living room and play with a toy. These are now my dreams that bring tears to my eyes. Sure we are guilty of watching other kids and getting upset. We are allowed that, but our Superman will get there. These little tasks will take more time and work, but they will be so worth it when he reaches these goals. So my dreams of Luke warming up in those famous striped pants or wearing a gold helmet that matches a famous dome haven't disappeared, but have been overtaken by the more important things in life.

Let's review: as of right now Luke can't sit, crawl, stand, walk, talk more than hi or hey, won't eat or drink, or gain weight. To someone on the outside or someone that don't understand things from the beginning or his special birth it looks like a dismal life. I however would argue till I am blue in the face.  This little boy isn't supposed to be here. He fought every obstacle that was placed in front of him. He is stubborn and determined. How else do you overcome a 20% chance of life, numerous infections, a blood pressure as low as 18/12, kidneys determined to shut down, 3 surgeries at once, and not to mention a crazy mother like me. Now we have one less obstacle to cross and we can hopefully move forward.

It's a huge accomplishment for smiley to ride in a cart

Cruisin'

May, June, and July cousins

the diagnosis

The only fair animal Luke doesn't cry and try to move away from

Spring has Sprung

Spring is finally here, which leaves us extremely busy. I hope I can get all caught up in this post along with passing along some really cute pictures.

First lets touch base on how big of an Indiana Hoosier Luke is...A couple weeks ago Luke apparently wrote a little note to the IU Men's Basketball team with the help of his Gammy. He told them how he has been cheering for them since he was 1 pound. He had worn cream and crimson on the flight to Riley at a week old. Luke even sent pictures of him cheering on the team the past 2 seasons. He asked if there was any way possible for a few autographs to go with his striped pants. Less than 2 weeks later Luke received a package! The team out did themselves. Luke's pants are now covered by the team. Cody and Victor even signed his pictures to put in his scrapbook. Luke has a couple jealous friends over his pants. They're now going in a shadowbox for Luke to keep in his room.

The weather has been up and down lately. Luke has been fighting allergies so we haven't been able to be outside a lot lately. When we are able to go out Luke takes full advantage of his swing set. Him and his dad had a nice moment the other night on the swing set after work. 

If you haven't heard through the grapevine yet, Luke has begun to roll. And by rolling, I mean non-stop moving and getting stuck. About a month ago, Luke started rolling. Nothing really quick, but moving around the room. Now we can't keep him down. I can't put him down before he is on the move. Even changing his diaper is challenging. More than once I've had a naked baby rolling through the living room. It is time to start baby proofing the house. As the picture shows, he seems to get stuck in uncomfortable places like closet doors. He was still happy though.

This past weekend was our first March of Dimes March for Babies walk. We didn't take part last year because Luke was still in RSV isolation. We made a goal this year of $500, and I'm proud to say we doubled our goal and had over a thousand dollars worth of donations. We had great weather for the walk. It was a little chilly at the beginning, but the 3 mile walk warmed us up nicely. I can't thank everyone enough that walked with us and donated in Luke's name. Hopefully we can double walkers and donations again next year for Superman's Squad.

For Mother's Day Luke surprised me with a new talent...he sat in a high chair for the first time at a restaurant. Usually we have to take an umbrella stroller in and he sits in that the entire time. Sometimes it can be challenging to explain to hostesses that he can't sit up on his own. We weren't given an option on Sunday. The restaurant was so busy there wasn't room for the stroller. We did have to put padding all around him, but he did really well. He started to get fatigued after a little while, however he made it through our entire meal. It was a great surprise. He felt so grown up he thought he could have a drink on his dad.

Yesterday we packed up Luke and made a trip to Riley. It was the appointment I have been waiting for...Developmental Peds. We were there 4 months ago, and that's where the Periventricular Leukomalasia diagnosis came up. We were also told that if Luke still wasn't sitting at this time we could look into a MRI. There was no turning back, I want the MRI. I am tired of guessing about the extent of his brain problems. I want to know what exactly were dealing with. The MRI is scheduled for June 3rd. Luke will be sedated for the procedure, so he can relax. After this, we will be sent to a Neurologist for a consultation. I know therapy is that best treatment, but I need to know what we are going into. We also had x-rays taken of Luke's hips. This is to make sure there isn't holding him back for walking. Apparently breech birth can affect his hips even at 1 pound. Those came back perfectly normal. We also had to have the conversation about Luke's weight. He eats and we don't gain weight. We are going to try a new formula and a new schedule. Luke now has snack times. We are also going to work on getting his digestive system working regularly. We have a few new ideas and medications to try. It seems like were back to trial and error. Hopefully we can get more answers as we move forward.

Reid's Arrival

This past weekend we had some excitement around here. Luke's best friend finally arrived. I woke up to a text from my best friend Danielle at 7:30am on Friday...she was having contractions. Now, let me say this wasn't the first time I got my hopes up with her pregnancy. During the  past few weeks she had contractions, so I didn't want to get too excited. After checking in on her throughout the day, her wife Cassie finally texted me around 8pm and said they were headed to the hospital. That gave me 3 hours of a drive ahead of me. The way I was running around the house grabbing stuff, getting ready, and going over Luke's schedule with Jonathin you would have thought I was going in labor. I got on the road around 9:30pm and set off for Indianapolis. I kept getting check ups as I was driving. I got to the hospital around 12:30am. Around 8am things started to get exciting...time to push. Let me tell you, I am so glad I never had to go through that. I can't give Danielle more props. She pushed that little boy for over 3 hours. It was amazing when he was born. I am so proud of her and Cassie. They are going to be great moms to this little boy. I was able to stay till that afternoon and visit and hold that little mister. He is adorable. After I left he had a little setback in the eating category. He was in no mood to try to eat, he sure is Luke's friend. So he wanted his own little NICU story. After a few days he is getting the hang of eating now and will hopefully be home soon. I keep trying to explain to Luke he has to wait till we go back to Riley on the 15th to see Reid. He just can't understand that. Danielle says she keeps having to tell Reid that Luke isn't going to show up just cause he is in the NICU. I can only think about all the trouble these two are going to get into. 

As much of a happy day it was for everyone, it was a little bittersweet also. I knew I would cry when he was finally born, because I was so happy and excited. But I think I cried a little for myself also. I didn't get to experience labor or the typical birth. Believe me, I'm thankful for everything we went through also or we probably wouldn't have Luke right now. I just feel a little cheated out of the whole experience. It makes me think about having another child in a couple years and trying it again. I can honestly say I haven't really thought about it much, other than my known answer...NO! Jonathin wants at least one more sometime,  but right now Luke is my first priority. I couldn't imagine going through this all over again and this time having another child already that I need to be there for. I'd feel like I was cheating one of them if something did go wrong. Oh well....we are no where near this point and I guess it is just food for thought. Reid can fill my baby gap for the time being. Now we have more trips to Indy for play dates. Congratulations again to Danielle and Cassie!

First Steps

As a lot of you know, Luke has weekly therapy sessions. Weekly he has occupational and physical therapy and twice a month he has speech therapy. When Luke first came home from the hospital he only had occupational therapy twice a month. As we have watched Luke not progress like we want we have upped therapy and introduced other forms. His therapy is through the First Steps program. It is through the state of Indiana for children 0-3 years old that are developmentally and/or physically behind. After Luke's third birthday, he will move to a preschool program through the school system. He will have his therapy while in preschool.

Today we had a meeting with Luke's coordinator and I came with questions. I know that Luke will need therapy after his third birthday. I needed to know where we went with therapy after his birthday in a year. You might think I'm crazy, but I'm a planner. I want to know before it comes up and bites me. The answers came and a lot more. To go to school, Luke has to be mobile. The teachers can't carry Luke. He can't crawl. So...we had the talk about a wheelchair. As much as I can say it is shock, but it isn't. Jonathin calls me Negative Nancy, but I consider myself Rita Reality. He says it is the medical education, but I think it is just my mom instincts. So where does this leave us...we now have the thoughts of a wheelchair or stroller like wheelchair. While then talking to our physical therapist she brought up some other home medical equipment. If possible she would like to get a stander. It will allow Luke to "stand" and work on muscles. Our therapist also thinks we will end up needing a walker and maybe braces. Once again I am not surprised and am glad someone finally said it.

I didn't get upset until Jonathin came home. I shed a few tears. In the words of our PT, Luke will have to fight for everything he does. Crawling, walking, standing will not come easy for him. As much as I like the support from everyone saying he will catch up, it can drive a person crazy at the same time. Reality is this...Luke is no where near where he should be. I still can't get over all the hurdles he has jumped. He makes me proud daily. Just sometimes, I need someone to speak reality to me.