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!
Tuesday, April 30, 2013
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.
Wednesday, April 24, 2013
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.
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.
Thursday, March 7, 2013
removal for gain
Let me just start this one off with a return to memory lane. 2 years ago I was 10 weeks pregnant and hadn't even seen the doctor yet. The morning sickness was just beginning, but the thoughts on what our first baby would look like and act like weighed heavy on my thoughts. We thought we had everything figured out. We had just moved to Bristol, so we could be close to family. I was going to drive back and forth to school to finish up my nursing degree in August and Luke would be here around September 19th. Never did the idea of a not so regular pregnancy, birth, or life after hit us. Yesterday Jonathin, Luke, and I drove down to Riley for what now seems as our monthly routine I asked Jonathin, "Did you ever think that you would be one of these parents? Did you ever think you would have a Riley kid?" Of course the answer is no. Nothing pointed that things would not be "normal." That Luke would have a difficult beginning. We all planned to be watching our "normal" child running around the house, getting into all the cabinets, chasing the dogs. I even have all the cabinet locks and power plug protectors to prove it. It was on my registry from the very beginning. We planned for a chunky little kid, not a string bean that can't keep some clothes on. If you know me at all, you know I'm a planner and a list maker. I learned from the best in that area. The past 2 years have shown me though that plans can change in a heart beat. There is a reason that we are now the parents of this little prized possession. As much as I get upset, worked up, tired, and just strung out I wouldn't want him any other way. We now have a new normal, and the funny part is it can change everyday.
So going with the idea that we are once again changing our life and what we expect, lets update you on our trip to pulmonary. Usually they are the most routine visits. We have seen Nancy Valentine since Luke was home. She monitored him on turning down his oxygen and since removing it. She also watches to see if he needs inhalers just to get through some rough parts. She has seemed to be the most helpful also. We were first seen by a nutritionist because she wondered about his weight and growth. I can honestly say I feel the most comfortable around her.
On our way to Riley Jonathin was complaining...insert comment here, just kidding. Anyways, he was talking how the trip was pointless this month. Luke hasn't been sick, were not on oxygen, and all she is going to do is listen to him and say see you in 3 months. However, I pointed out that if we don't go and Luke does it get sick it is a pain to get back in to see her and to get medication, so we go. This way we stay in the loop.
There is a routine when you have an appointment at the Riley Outpatient Clinic to see a doctor. They call you back and Luke has to be weighed, measured, and looked at. I don't really enjoy this part particularly. For some reason Luke shrinks when we go to Riley. It doesn't matter which specialty we are there to see, but we;re always smaller. Yesterday was no exception. Luke only weighed 18 and a half pounds and was only 30 inches tall. Just last month he was over 19 pounds and 31 inches tall at our own pediatrician. Who knows? So then we go back to the procedure room and go to the list of questions. Am I the only parent of a special kid that feels like my memory is just a filodex? Has he been admitted since we saw him last? Has he had a fever? How much is he eating? What is he eating? Are his vaccination up to date? What did he eat and wear on January 13th? Okay, Okay that last one is a little far fetched, but you get the idea. I have so much in my head about dates and times and what I do and see I don't know how I have room for school things or even if I pushed the start button on the dishwasher. I at least pride myself on my Luke memories. I have calendars, I have notes, and my mind hasn't let me down yet.
Okay so after we go through the normal round up Nancy comes in. She asks a few more in depth questions and then we get to an unexpected area...tonsils. After looking at the lack of growth...nothing new there, she dives deeper. How does Luke sleep? Well I think he sleeps fabulous. I mean all I see on Facebook are mom's complaining about sleep and how they're so tired and here I have a champion sleeper. Sleeps for 10-12 a night, takes 2 naps a day sometimes lasting 4-6 hours. I just assumed that he was like his dad. Jonathin could sleep in the middle of a firestorm and have no recollection of it. Nancy however informed me that this sleeping habit is not normal. Uh oh, there is that word again. We dive into if Luke is comfortable when he sleeps or if he is restless. Well I usually hear every little peep he makes at night in the monitor so I would say he sleeps peacefully. However, I then think about how much he moves. I mean this kid is in a different position every time you check on him. He also seems to get stuck in the corner of his crib by the morning. Just last week I thought to myself, man how are we gong to keep him in a toddler or even a twin bed when he gets too big?
From here I had a feeling I needed to bring up the big tonsils. In the two times he has been sick this year they have swabbed him for Strep throat because his tonsils are huge. One time they were touching. I have brought up removing them, but since it was Strep no one really said much. However, it worried Nancy. So as she did her own exam she had me look in Luke's throat. Tonsils are supposed to be flat and against your throat if you are not sick...Luke's are the size of marbles and stick out...dun dun dun! So where does this leave us? Well Luke could be restless in his sleep because the tonsils could be obstructing his breathing. He moves around so much to find a good place. He is then tired from not sleeping well at night. If he is not sleeping well it could be affecting his growth!!!! There you have it...another possible answer to the never ending question, Why is Luke not growing and catching up????? This then left me to chuckle to myself and I could see on Jonathin's face he knew what was making me laugh.
For the past year at least my grandma Watson has retold the story about my dad. Apparently when he was little he was a skinny little stick of a kid. Then he got sick and they removed his tonsils and adnoids. She swear that did something for him, because he became the husky kid of the family. So much she had to go buy him husky pants. She has sworn up and down about this for some time. So there you go Grandma, Luke might be husky soon too.
So where do we go from here? Do I get in contact with a ENT specialist at Riley? Oh no my friends, first we have to have a sleep study! Do we all remember how that went last time? SLEEP STUDY if you don't remember please review here. I would have to say it is on my top 5 of the worst nights in the past 2 years and that includes all 98 in the NICU. I have never dreaded something so much as a night locked in a room with lights, beeps, and a crying child hooked up to so much stuff that he looks like he is from a horror movie. Also, that when he is upset and wont stop crying, I can't hold him. It is just me and him in this room. It gets to you so much that you have to leave the room, but then you feel so guilty if he wakes up and you are not there.
So, here Jonathin thought we were going to a pointless trip and we come out with some possible answers where we least expected it. Hopefully everything is as simple as removing his tonsils to get this boy moving.
I also forgot other big news. Luke is eating food again. Slowly we are getting back to a jar of food a day. It's been months since he would eat food. He has so began to eat cookies and other food he can handle. He still struggles, but can usually get it down by himself. His tonsils could also be part of his eating and swallowing problem...
So going with the idea that we are once again changing our life and what we expect, lets update you on our trip to pulmonary. Usually they are the most routine visits. We have seen Nancy Valentine since Luke was home. She monitored him on turning down his oxygen and since removing it. She also watches to see if he needs inhalers just to get through some rough parts. She has seemed to be the most helpful also. We were first seen by a nutritionist because she wondered about his weight and growth. I can honestly say I feel the most comfortable around her.
On our way to Riley Jonathin was complaining...insert comment here, just kidding. Anyways, he was talking how the trip was pointless this month. Luke hasn't been sick, were not on oxygen, and all she is going to do is listen to him and say see you in 3 months. However, I pointed out that if we don't go and Luke does it get sick it is a pain to get back in to see her and to get medication, so we go. This way we stay in the loop.
There is a routine when you have an appointment at the Riley Outpatient Clinic to see a doctor. They call you back and Luke has to be weighed, measured, and looked at. I don't really enjoy this part particularly. For some reason Luke shrinks when we go to Riley. It doesn't matter which specialty we are there to see, but we;re always smaller. Yesterday was no exception. Luke only weighed 18 and a half pounds and was only 30 inches tall. Just last month he was over 19 pounds and 31 inches tall at our own pediatrician. Who knows? So then we go back to the procedure room and go to the list of questions. Am I the only parent of a special kid that feels like my memory is just a filodex? Has he been admitted since we saw him last? Has he had a fever? How much is he eating? What is he eating? Are his vaccination up to date? What did he eat and wear on January 13th? Okay, Okay that last one is a little far fetched, but you get the idea. I have so much in my head about dates and times and what I do and see I don't know how I have room for school things or even if I pushed the start button on the dishwasher. I at least pride myself on my Luke memories. I have calendars, I have notes, and my mind hasn't let me down yet.
Okay so after we go through the normal round up Nancy comes in. She asks a few more in depth questions and then we get to an unexpected area...tonsils. After looking at the lack of growth...nothing new there, she dives deeper. How does Luke sleep? Well I think he sleeps fabulous. I mean all I see on Facebook are mom's complaining about sleep and how they're so tired and here I have a champion sleeper. Sleeps for 10-12 a night, takes 2 naps a day sometimes lasting 4-6 hours. I just assumed that he was like his dad. Jonathin could sleep in the middle of a firestorm and have no recollection of it. Nancy however informed me that this sleeping habit is not normal. Uh oh, there is that word again. We dive into if Luke is comfortable when he sleeps or if he is restless. Well I usually hear every little peep he makes at night in the monitor so I would say he sleeps peacefully. However, I then think about how much he moves. I mean this kid is in a different position every time you check on him. He also seems to get stuck in the corner of his crib by the morning. Just last week I thought to myself, man how are we gong to keep him in a toddler or even a twin bed when he gets too big?
From here I had a feeling I needed to bring up the big tonsils. In the two times he has been sick this year they have swabbed him for Strep throat because his tonsils are huge. One time they were touching. I have brought up removing them, but since it was Strep no one really said much. However, it worried Nancy. So as she did her own exam she had me look in Luke's throat. Tonsils are supposed to be flat and against your throat if you are not sick...Luke's are the size of marbles and stick out...dun dun dun! So where does this leave us? Well Luke could be restless in his sleep because the tonsils could be obstructing his breathing. He moves around so much to find a good place. He is then tired from not sleeping well at night. If he is not sleeping well it could be affecting his growth!!!! There you have it...another possible answer to the never ending question, Why is Luke not growing and catching up????? This then left me to chuckle to myself and I could see on Jonathin's face he knew what was making me laugh.
For the past year at least my grandma Watson has retold the story about my dad. Apparently when he was little he was a skinny little stick of a kid. Then he got sick and they removed his tonsils and adnoids. She swear that did something for him, because he became the husky kid of the family. So much she had to go buy him husky pants. She has sworn up and down about this for some time. So there you go Grandma, Luke might be husky soon too.
So where do we go from here? Do I get in contact with a ENT specialist at Riley? Oh no my friends, first we have to have a sleep study! Do we all remember how that went last time? SLEEP STUDY if you don't remember please review here. I would have to say it is on my top 5 of the worst nights in the past 2 years and that includes all 98 in the NICU. I have never dreaded something so much as a night locked in a room with lights, beeps, and a crying child hooked up to so much stuff that he looks like he is from a horror movie. Also, that when he is upset and wont stop crying, I can't hold him. It is just me and him in this room. It gets to you so much that you have to leave the room, but then you feel so guilty if he wakes up and you are not there.
So, here Jonathin thought we were going to a pointless trip and we come out with some possible answers where we least expected it. Hopefully everything is as simple as removing his tonsils to get this boy moving.
I also forgot other big news. Luke is eating food again. Slowly we are getting back to a jar of food a day. It's been months since he would eat food. He has so began to eat cookies and other food he can handle. He still struggles, but can usually get it down by himself. His tonsils could also be part of his eating and swallowing problem...
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| Eating some yogurt bites |
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| just waiting for dinner |
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| playing with some corn |
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| coming home from Riley |
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| Our skinny monkey at his pulmonary appointment |
Wednesday, January 23, 2013
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.
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.
Thursday, January 17, 2013
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:
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:
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| Little Elvis |
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| Looking real excited for his January Synagis vaccine |
Sunday, January 13, 2013
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.
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
Monday, December 3, 2012
GG = GREAT Grandma
It has been too long of time since an update. Luke has went through a cold, cough, and a stomach bug. He has had his first RSV vaccine of Synagis. He has been to Riley for a surgery check up for his g-tube. He has also began speech therapy every other week. And lastly we had a switch of occupational therapist....that is just the past couple of weeks. As much as I could go into all of that, it's not where I'm going with this one...
This past Friday my Grandma, Luke's great grandma was watching him while I worked that evening. She had mentioned that she was having pain in her abdomen and might go to the emergency room later that evening. She has had the pain before along with a bowel blockage. No one in my family expected what would entail now 48 hours later. We have witnessed 2 emergency surgeries and a fighting will of our grandma. We have been up and we have been down. Now as I sit in the intensive care unit waiting room, surrounded by family, my mind wanders to my own great grandma and how little I remember of her. I was 8 when she passed and I can't count enough memories on both hands that I have of her. Then I think of Luke and him being only 1, and how he may not remember not even one memory of his time with his GG. It hurts, especially because he will never know all she has done for him since his earlier than planned birth.
Grandma raced to the hospital to see him before he was airlifted to Riley. She didn't want to miss that little guy. She braved the pain to ride to Indy to see Luke at Riley, when he was only a month and a half old. When we were locked in our home for RSV season, GG would call to check on us and make sure his Mom had a Mountain Dew to get through home arrest. She would always drop everything to come to our house to sit with Luke while we packed our house, or when I would get out of the house for a couple hours. Grandma would always squeal when Luke would grab her and pinch, because it would leave a mark. Just Friday she got a kick out of feeding Luke her whipped cream from her milkshake,
Grandma would jump over backwards and do anything for any of us grand kids, no matter how old we got. She will ride with us to doctor appointments and chase after the kids throughout the house. These memories Luke might not remember specifically, but I hope that we can all keep these memories for him. The pictures tell the story of how much she loved her grand kids, and the way she bragged about her 1 pound miracle great grandson. No matter the outcome of her situation at this early morning, there is no other person I would want to call my G, or my son's GG. We love you Grandma! <3
This past Friday my Grandma, Luke's great grandma was watching him while I worked that evening. She had mentioned that she was having pain in her abdomen and might go to the emergency room later that evening. She has had the pain before along with a bowel blockage. No one in my family expected what would entail now 48 hours later. We have witnessed 2 emergency surgeries and a fighting will of our grandma. We have been up and we have been down. Now as I sit in the intensive care unit waiting room, surrounded by family, my mind wanders to my own great grandma and how little I remember of her. I was 8 when she passed and I can't count enough memories on both hands that I have of her. Then I think of Luke and him being only 1, and how he may not remember not even one memory of his time with his GG. It hurts, especially because he will never know all she has done for him since his earlier than planned birth.
Grandma raced to the hospital to see him before he was airlifted to Riley. She didn't want to miss that little guy. She braved the pain to ride to Indy to see Luke at Riley, when he was only a month and a half old. When we were locked in our home for RSV season, GG would call to check on us and make sure his Mom had a Mountain Dew to get through home arrest. She would always drop everything to come to our house to sit with Luke while we packed our house, or when I would get out of the house for a couple hours. Grandma would always squeal when Luke would grab her and pinch, because it would leave a mark. Just Friday she got a kick out of feeding Luke her whipped cream from her milkshake,
Grandma would jump over backwards and do anything for any of us grand kids, no matter how old we got. She will ride with us to doctor appointments and chase after the kids throughout the house. These memories Luke might not remember specifically, but I hope that we can all keep these memories for him. The pictures tell the story of how much she loved her grand kids, and the way she bragged about her 1 pound miracle great grandson. No matter the outcome of her situation at this early morning, there is no other person I would want to call my G, or my son's GG. We love you Grandma! <3
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