Stewing

I never thought in a million years I would be mad or even upset with Riley...but that day has came. The more I think about things the more upset I get. Not with Riley in general and especially the NICU, but I feel like the ball was dropped in the developmental peds department. We have seen them a total of three times in the past 16 months since Luke was discharged from the NICU. We've changed doctors after a cruddy first visit. After Luke's G-tube placement I was the one to call about an appointment since it was never mentioned or scheduled. Each time I fill out a paper asking me what my concerns are and they are always the same three things: 1. Developmental delays 2. Feeding issues 3. Diet. They give me suggestions about feeding and diet and I even speak to a dietician on occasion, but we never really get answers for the delays. Now I find that they knew all a long why he had the delays and I was never informed.

I have Luke's full report from the NICU while he was a patient there. It is broken down to birth and all the main systems of the body. In bold letters it says: RIGHT IVH GRADE 1. Now to a person that doesn't have any background of medical studies you might not know what this means. It means there is a right interventricular hemorrhage grade 1 AKA: brain bleed. This is something that we were never in formed of that we can remember. This can cause some of our problems we have been experiencing. That isn't all I found. It also says that on an ultrasound on 6/23/11 it showed possible periventricular leukomalacia and that it is recommended to follow clinically! It says it right there that it should have been watched, yet I was never informed. Now I know I could/should have seen this before since I do have a copy, but really should that be my job. There are some many other things that could have been done before now. I can't say things would be different, but we could have had the chance.

The more I think and wonder about things the more upset I get. I have since called our regular pediatrician to discuss it with him next week. I think we need to see a neurologist just to clarify everything. I know if I call Riley myself it will be a couple months. I might be able to get Luke into a neurologist around our area. I think that sometimes doctors don't want to diagnose children right away, but in the long run it is better to have these diagnoses. Then I wonder if I should have looked at the report closer myself and picked it apart. So as it stands Luke's therapists know where we are, and have changed a few things to help up. Luke is wearing his shoes more, especially in his exersaucer. This will help with stability.  Hopefully we can get answers and some clarification.

Answers

It has taken over a year, but we might finally have an answer to the delays. No, it isn't just because it was a preemie, but it is "side effect" if you would like to say that.

Yesterday Luke, my mom, and I loaded up and headed to Riley to see the Developmental Peds department. We hadn't seen them since July when the decision to try inpatient feeding therapy was made. At that point they never really gave us many answers other than he needed more nutrition to catch up. So we did what they recommended. Since then we have had our struggles, but we are slowly seeing improvements. However, Luke still does not sit. We have increased therapy and are watching Luke become stronger. For example right now I am watching him roll around the floor just trying to reach things that he has thrown around.

Don't get me wrong, I am PROUD of him and all that he has accomplished. I just really want some answers why we aren't progressing like we had hoped. I was told over and over that he should catch up by the time he is 2...NEWS FLASH! Isn't gonna happen. I know that, and others are finally realizing that too at this point. I'm just more upset that I don't know why.

Well the NP we saw yesterday was happy with Luke's weight gain...wasn't expecting that. Luke is on the chart for height and on the height/weight chart for his adjusted age. He isn't on there by much, but he is on the graph instead of below it. She asked me my concerns, I had three.
     1. weight gain
     2. nutrition and diet
     3. developmental delays

In no particular order. I had heard before that the more nutrition he takes the more he will catch up. The problem is this, his diet changes each day. We fight the vomit, we fight the schedule, we fight life in general with Luke. I was told to work hard at getting in Luke's 5 feeds a day at 6 ounces. Even if Luke is sleeping, we need to feed him. We can either wake him or feed him in bed. I am now going to try and feed Luke earlier so we have a better chance to get his feeds in. I never thought I would say the great sleeping Luke does would hurt him in the long run. We also need to watch our schedule to make sure we are able to feed him on his schedule. Of course this happens when school is just starting and we're still trying to get ourselves in a routine. Also, they would like us back on Duocal. This is the added calories we were on almost a year ago to help a little. So no feed is simple. We have some with Duocal, some with Miralax, some with other meds. Not to mention the occasional inhaler. A complicated life, just got a little more stressed. The dietician is also going to call me this coming week to hash out some details.

Now we get to the big question...developmental delays. Like I said before, we need more nutrition for his growth. It all stems back to an ultrasound from the age of 1 week. At this time we were more worried and stressed about brain bleeds and we celebrated when there was minimal or none. I don't believe we were ever told about the minimal amount of white matter on the right side of Luke's brain. They are saying that his brain is delayed because it is rewiring itself. When he was born so small and so early his brain wasn't ready like the rest of his body. We are playing catch up more than most because of this smaller amount of matter. From what they told us, the greatest help to Luke with rewiring is therapy. To work with him all the time. Along with the high nutritional valued food, he should catch up. They of course can not give me an age when things will get there. They are hopeful that Luke will be sitting within the next 6 months. He is getting so close, he just needs to go over that threshold.

In the back on my head I always wondered about cerebral palsy. He has less muscle tone and is spastic at times. It comes and goes throughout the day. They want to see Luke back in 4 months to see if we have progression. If he is still not sitting and were in the same place they would like to do an MRI to make sure we haven't missed anything. Like I said before this is the first time I've heard about the small amount of brain matter. After speaking to Heather, Lily's mom, she went looking online just to see what she could find today. I give her a huge amount of gratitude. She found something that looks like Luke to a T from what we can see.  Periventricular Leukomalacia is what we believe to be Luke's diagnosis. Here is a link This is what the developmentalist was speaking of. The link sums Luke up correctly. The brain dies in areas around the ventricles. This happens predominately in premature infants, especially those with severe infections...ding ding ding. Infants with PVL can face major nervous system problems, especially in movement in the first year and the second year. The only treatment: therapy.

I heard the big words from the doctors, but all the answers come from Heather's searching. I can finally say that there is a reason to the madness and it isn't something were doing wrong. This is our baby, and we need to work with him. I guess in the back of my head I always thought I was the reason he wasn't sitting and I was the reason he was so behind. Now I know that there is a rhyme or reason to all of this. I feel relieve, and hope that we can overcome the obstacles. So not all great news, but I'll take it.

Now just to add some cuteness to your day:

Little Elvis

Looking real excited for his January Synagis vaccine

Big Catch Up!

Hey everybody, we're still here I promise! Starting tomorrow a crazy 16 weeks of school begins, so I figured this is the best time to catch everyone up on the past month and a half. I don't know why it has taken so long, but we have a lot to cover. So here goes. 

December was a odd month for all of us. At the beginning we were looking so forward to Christmas, then on the 3rd we lost my grandma. She was a huge part to all of our lives. She would babysit Luke at least once a week for me. We also spent at least once a night each week with her while Jonathin worked. Everything happened so sudden and unexpectedly. So the month left everyone in my family a little lost. However, we pulled it together and even though it was a little sad and different, we had a good Christmas. Luke didn't mind another visit from Santa this year either instead of going to the mall to see him there. 

 In December we also made a trip to Indianapolis for a visit to Riley. It was a pulmonary check-up since Luke had been sick a month before and we needed to follow-up with them. His doctors decided to start him on a daily inhaler just to keep his lungs strong. Luke is not a fan of the inhaler, just due to the mask and chamber that goes along with it. However, it is easier than doing a nebulizer twice a day.

Indiana Basketball has hit it's stride also around here. Luke has his striped pants and is ready for this season. He is also to blame for their one loss, which also means that is due to his mom too. We didn't dress him in crimson and cream that night against Butler. Oh well, we think we did them a favor to alleviate some pressure on the guys. We won't do it again though. Go Hoosiers!

So far we have had our moments with our feeding tube. As of two weeks ago Luke is 18.5 pounds. I feel that he is getting heavier. No week is the same. If Luke is sick we have to dial down the feeds. If were feeling good, then we have to work our way back up to full feeds. Throw in a goofy schedule and that makes things funny. The little extra weight is helping with some sitting also. Luke is trying to sit himself up, but it looks a lot like baby crunches. His therapists are happy with the progress. I just wish it  was little quicker. He has been spending a lot more time in his exersaucer lately. He really enjoys it FINALLY. I'm actually afraid he might break it. He is a roller also. He will take off across the floor when you aren't looking. Earlier this week he was in the basement and ended up rolling into the entertainment center and scratched his face. It didn't mind after about 15 seconds.

We also have been waiting patiently for the BIG GAME. That being BCS National Championship Football Game. This little boy hadn't missed a game all season and he wasn't going to start with this one. However, it would have been okay if he went to bed, cause he wouldn't have missed much. Him and his daddy were dressed to impress in all Notre Dame, but even that didn't help the team. It was a good season though, and we are ready for next year.

We've started watching movies and actually paying attention here lately. Also Luke got a DVD/VCR for Christmas this year. So I've been letting him watch movies throughout the day. His favorite is still The Lion King, but he is just starting the Disney collection. Just yesterday we were at my parent's house picking up some of my VHS tapes for him to start watching. He is more into the musical parts, but who isn't really. I just want to give him plenty of time to learn some characters before his first trip to Disney in 22 months, but hey who is counting.

Luke and Quin have been hanging out over the school break also. Luke can still fit in Quin's baby stroller...barely. So Quin has been practicing pushing Luke for the trip to Disney also.

We spent New Years at my grandparents house. Luke stayed awake till midnight, more than I can say about his dad. This year we have many goals for Luke and for us as a family. This is the year for sitting and crawling. Maybe, just maybe a few steps also. We would love Luke to get over his food adversion. Hopefully we can get Luke to take more feeds by mouth and can wean some from the tube. Just really hope that this year is a year of catching up.

This is also the year I can finally finish school and can go to work full time. However, that may be with Luke and his status. It would be nice to have a little more money to work on our house. Slowly we would like to make some upgrades to start making it our own.

Finally, we have signed up for March of Dimes and their March for Babies walk in April. Luke's team is known as Superman's Squad. The walk in April 20th in Elkhart. We hope to have a large walking crew with us. Our goal is to raise $500 before the walk. You can help us, either by donating or walking with us. We hope to also have shirts made for the walk. Any little thing is help to us. I will have more next update, which hopefully will be within a week or so. We are headed to Riley on Wednesday to see Developmental Peds and are hoping to finally get some answers on the delays that Luke experiences.  Hope we have caught you all up. School starts tomorrow and it is going to get crazy here real soon. Hope everyone has a great week.

Jordan