As I sit down to write this blog, a new feeling pours over me. This is the first time (at least the first time in a long time) that I feel vulnerable while writing. These are such intimate, personal details of our journey and the struggles that come along with it. Honestly, I've sat here for quite a while, contemplating whether or not I want to continue with this blog. I think it's good to share. It gives me an opportunity to educate others and advocate for my kids. On the other hand, it really opens a door and lets people into our lives. I guess, if nothing else, I ask that others respect this vulnerable place that we are in. Maybe it is out of fear of judgment and scrutiny, but this is a difficult blog. "Then why post it?" you may ask. Well, it all goes back to the good that has come from this blog. The awareness that I hope to bring to Eli's disease, the hope that another mother may come across it and realize that she is not alone and the feeling that I am sharing these details (most importantly) with the people who love our kids and truly care about what is going on with them. So, here it goes....
The past month has definitely been a challenge for all of us. Only seeing each other in passing, late nights, early mornings, new routines, new challenges.... The days seem to be longer than their 24 hours and just run together in a blur. Our weekly "Huddles" at OCH are a time to meet with the team: Psychology, Feeding, Speech, OT, PT and Nutrition, along with myself, all come together to discuss the previous week and develop a plan for the week to come. A few weeks ago, our discharge date was given: Tuesday, June 14. That would be our 30th day of in-patient services. At the Huddle two weeks ago, Eli was making great progress. His overnight feeds had decreased from 10 hours to six. He was almost solely off straight Gerber Stage 2 purees and at least on a mixture of Gerber and blended table food-versions of those foods. Some of them were straight blended foods! He was also up about 4 pounds. Then there was a shift....
Part of the process at OCH is the therapist (feeder) stepping out of the room and allowing the parent to begin feeding using the protocol. The first week of this for us went fairly well. There was minor protesting, but Eli ate his food for the most part. Then we continued to shift the mixture of his foods from a 50/50 mix to more of a 25/75 mix, adding more of the blended table food and less of the Gerber. This was a HUGE deal for Eli. Gerber is really all that he has ever eaten. It's safe for him. He knows it's safe for him. Anything else; well, there's just too much unknown and too much fear. With this, the minor protest turned into defiant refusal. Screaming, yelling, crying... the whole nine yards. There was one day that Eli was fidgeting with his feeding tube and I was terrified that he was going to rip it out. Luckily, that didn't happen. But it was obvious that this part of the process what taking a toll on Eli and his capacity to handle such a scary thing. I'm 32 years old... I've dealt with a lot in my life and as a parent, I've seen a lot of things and experienced a lot of difficult things related to my kids and it was difficult for me to sit and try to get him to eat when he was crying and begging me to not make him. He would bargain with us, "Can I just eat my fruit?" Or reassure us through tears, "I'll eat next time." Then came the threats of "I'm never going to eat again!" As overwhelming as Eli's emotions were, mine and Adam's were just as high; part frustration, part defeat; part anger; part... mixture of every other emotion in the book.
This past weekend was the toughest. There was one day that Eli refused 3 out of 4 meals. Like I said, my days are all blobbed together, but I think that actually happened two days in a row. Eli had been steadily gaining weight after practically no gain in the past 2 years. He was actually up to 49.4 pounds on Friday. By the time of weigh check on Monday morning, even after eating breakfast, he had dropped to 47, losing 2.4 pounds. With discharge one day away, we had what was supposed to be our last Huddle.
This evening, Eli said to me, "Mommy, are you so excited that we get to go home tomorrow?" And I had to sit down with my little boy, hold him close and tell him, "Not just yet..." I explained to him that because he had been refusing meals and losing weight, we are not getting to go home tomorrow. The plan now is to stay until Thursday. The psychologist apologized and said that we should have altered the protocol a week ago. So now, here we are, going for a final Hail Mary... we've altered the protocol and are trying a new approach in the hope that Eli will begin eating again and we can go home on a good note instead of filled with fear. They are working out a plan for us to monitor his calories on a daily basis and adjust his overnight tube feeds accordingly. Because of his weight loss over the past 2 days along with decreased fluid intake, they are bumping his tube feeds up from 6 hours to nine for the next few nights. I won't go into details of the other changes right now.... It's just too much for my mind to handle right now. But we're praying for good results. And as the Psychologist said, if we go home and it just doesn't work, he has his feeding tube; he doesn't have to eat. We've been trying to monitor his anxiety and keep tabs on it, but we just pushed too hard, too fast. I asked her, "How long do we go with him refusing to eat when we get home? We can't risk him losing more weight." She reassured us that we will go home with a plan to make sure that doesn't happen.
On one more note, I'm sure some people may read this and think, "Wow, what a brat." I won't lie, I've had days where I thought "Eli needs to quit being a brat and throwing a fit." And then I remember that this is one of the absolutely hardest things for him. I'm terrified of flying. Give me an all expense paid 10-day trip to Italy... Nope, Not gonna happen. I'm terrified of flying and I will NOT get on a plane. That's how Eli feels about food. He doesn't find it pleasurable. He doesn't get joy out of eating. Comfort food (which I have been indulging in quite a bit over this past month) simply does not exist for him. And honestly, Eli is a super smart kid. I realized it a few months ago. He knows that some foods are safe, and therefore, other foods are not safe. He knows that foods that are not safe for him can result in pain and bad things for him. And I'm sure he realizes that eating the wrong food (he's anaphylactic to dairy and egg) could do more damage than just cause him pain... That's a scary thought for anyone, much less a 7 year old boy. So, for me, instead of looking at it as my son is throwing a fit and being a brat because he doesn't want to do something, I'm trying to re-frame that in my own mind that we're asking him to do something that is extremely difficult for him and something that a lot of adults I know wouldn't be willing to do. And I just keep telling myself, "It may not always be easy, but (hopefully) it will be worth it."
I keep getting sweet text messages, cards and phone calls of love and encouragement. Tomorrow is a new day and that means we're one day closer to getting to come home and be a family again. And I can't wait for that day to come.
Monday, June 13, 2016
Thursday, June 2, 2016
It's been a LONG week
Well, we're almost at the end of the week and Eli's projected discharge date is June 14. He has been so brave and strong these past few weeks and has made so much progress. But it's been a LONG week.... But the good news first.
Eli has only been eating Stage 2 Gerber purees over the past several years. We've never been able to get him to eat table foods. The psychological side of it, the PTSD symptoms of remembering the pain that he had in the beginning associated with eating, has always played a factor in Eli being too afraid to eat anything but Gerber. Through his hard work and the dedication of the therapists and team here at OCH, Eli is TOTALLY off Gerber! All of his foods on his menu are now blended, real table foods! It is so exciting and I'm so proud of Eli and the progress he has made!
So now for the bad news.... Eli still really struggles with the fear aspect of eating. And I totally understand. Food has never really been pleasurable for him. And Eli is very smart; he understands that eating the wrong thing could result in a lot of pain or even be fatal to him. Because of that, he has hit a bit of a brick wall as far as his progress. Something as small as his food looking different, having a different colored speck in it, having a chunk that didn't get blended down, or his two separate foods touching each other can set off a total meltdown. Over the past week, he's refused at least one meal almost daily. And because of that, his weight has dropped. He was up a couple of pounds, but at his last weight check, he was down almost a pound. It may not seem like much, but for kids like Eli, every ounce counts.
And it's hard to not get frustrated with him. When he pulls his head into his jacket and refuses to eat, then lays his head on the table sending spoons and bowls of food pouring all over the place... I struggle with not getting onto him. Then he looks at me, with tears rolling down his face and all he wants is for me to hold him... I have to fight against every fiber of my being to not wrap him in my arms and tell him that it's all going to be okay. You see, OCH has a very strict Cognitive Behavioral protocol with feeding. Meals are filled with comments of "Good bites!", "Great swallowing!" and Awesome taking your drinks!", as well as comments of "Take your bites or the game goes away.", "Take your drinks and you can have your music back." and "Chew and swallow to your tummy and you can watch your show." Words and phrases are very restricted in order to keep from rewarding undesirable behaviors with positive reinforcement of attention. It seems harsh, but it really does work. But that doesn't mean it's easy for either of us.
My first time feeding Eli this week was met with a meltdown; total refusal of his food and tears... and sobs... and pleadings for comfort. I fought back tears through the entire meal. Then when we came back to the room and Eli quickly fell asleep, as he often does when he's overwhelmed, I had my own little meltdown of tears and sobs and wishes of comfort.
This process has not been easy, but we have seen our little victories. Eli is down from 10 hours of overnight tube feeds to only 6 hours. Gerber is out the window, something I thought we might never achieve. And each day, we are one step closer to coming home with Eli progressing in his eating. I fully expect more tears and struggles and meltdowns along the way. But we're making progress. ELI is making progress. I don't know many adults who could go through what he has and still have a smile on their face, but he does it every day. And at the end of the day, he's going to sleep with little successes under his belt.
Eli has only been eating Stage 2 Gerber purees over the past several years. We've never been able to get him to eat table foods. The psychological side of it, the PTSD symptoms of remembering the pain that he had in the beginning associated with eating, has always played a factor in Eli being too afraid to eat anything but Gerber. Through his hard work and the dedication of the therapists and team here at OCH, Eli is TOTALLY off Gerber! All of his foods on his menu are now blended, real table foods! It is so exciting and I'm so proud of Eli and the progress he has made!
So now for the bad news.... Eli still really struggles with the fear aspect of eating. And I totally understand. Food has never really been pleasurable for him. And Eli is very smart; he understands that eating the wrong thing could result in a lot of pain or even be fatal to him. Because of that, he has hit a bit of a brick wall as far as his progress. Something as small as his food looking different, having a different colored speck in it, having a chunk that didn't get blended down, or his two separate foods touching each other can set off a total meltdown. Over the past week, he's refused at least one meal almost daily. And because of that, his weight has dropped. He was up a couple of pounds, but at his last weight check, he was down almost a pound. It may not seem like much, but for kids like Eli, every ounce counts.
And it's hard to not get frustrated with him. When he pulls his head into his jacket and refuses to eat, then lays his head on the table sending spoons and bowls of food pouring all over the place... I struggle with not getting onto him. Then he looks at me, with tears rolling down his face and all he wants is for me to hold him... I have to fight against every fiber of my being to not wrap him in my arms and tell him that it's all going to be okay. You see, OCH has a very strict Cognitive Behavioral protocol with feeding. Meals are filled with comments of "Good bites!", "Great swallowing!" and Awesome taking your drinks!", as well as comments of "Take your bites or the game goes away.", "Take your drinks and you can have your music back." and "Chew and swallow to your tummy and you can watch your show." Words and phrases are very restricted in order to keep from rewarding undesirable behaviors with positive reinforcement of attention. It seems harsh, but it really does work. But that doesn't mean it's easy for either of us.
My first time feeding Eli this week was met with a meltdown; total refusal of his food and tears... and sobs... and pleadings for comfort. I fought back tears through the entire meal. Then when we came back to the room and Eli quickly fell asleep, as he often does when he's overwhelmed, I had my own little meltdown of tears and sobs and wishes of comfort.
This process has not been easy, but we have seen our little victories. Eli is down from 10 hours of overnight tube feeds to only 6 hours. Gerber is out the window, something I thought we might never achieve. And each day, we are one step closer to coming home with Eli progressing in his eating. I fully expect more tears and struggles and meltdowns along the way. But we're making progress. ELI is making progress. I don't know many adults who could go through what he has and still have a smile on their face, but he does it every day. And at the end of the day, he's going to sleep with little successes under his belt.
Sunday, May 29, 2016
Half Way There!!
Well, Eli has almost hit the half-way point of his stay at Our Children's House (if we end up only staying 4 weeks). It has been an eventful and exciting 2 weeks!
First off, let me say just how proud I am of my family, as a whole. There are two major differences between this admission and Eli's last stay here back in 2012: We live MUCH closer now and Ella is here (I was pregnant with her during Eli's first admission). So this stay has definitely been a balancing act with Adam working and taking care of Ella then me being here with Eli and working from the hospital..... then the big switch every weekend with Adam staying with Eli and me going home to be with Ella for a day or two. It hasn't been easy, but we've found a pretty good rhythm and it has worked out really well. Today was also the first time that the kids really got to spend a good amount of time together. We attempted it last weekend, but Ella really didn't seem to like being at the hospital, so she and I headed back to Granbuy just an hour or so after she and Adam got here. So living closer this time around has definitely been a plus, but making sure that Ella doesn't get lost in the shuffle has been a big challenge. But with the temporary routine Adam and I have worked out, along with my Mom and Dave coming up for a few days to help us spoil (and take care of) the kids, we've managed really well! Eli and Ella got so excited when they first saw each other. It melted this Momma's heart!
And Eli.... WOW! I am SUPER proud of him, as we all are. After being at roughly the same weight for the past 2-3 years, he has gained almost 3 pounds since being here! I giggle when I tell people that he has a little 'pudge' in his belly now! That's something we've never really seen before and it's such a wonderful sight!!! The therapists and other professionals here have really been working hard to help Eli learn to eat, while also helping to manage his stress and anxiety. They seem to have found a good plan for introducing new foods and working them into Eli's diet. Hopefully in the next week or so, Adam and I will be introduced into meal times and will also be taught how to work their plan into our lives at home.
For those who don't know the process here, the first week or two is spent with Eli in a "Feeding Room" with a therapist. Parents do not go to feeds at this point because the therapists are trying to do several things at this point: they want to break any bad eating habits that the parents and kids may have as well as get an opportunity to observe the child and learn their eating habits, strengths and weaknesses. Then, about half-way through, parents are taken to an "Observation Room" where they can view feeding sessions and learn key phrases to use during meals and see how the therapists work through meals, especially rough spots when kiddos are resistant or having difficulty. The last phase it bringing the parents in to be involved in preparing meals and actually participating in meal times. So, hopefully we will start observing soon!
Their plan so far has been to introduce 'table versions' of the pureed foods that he is already eating, like sweet potato, carrots, pears, apples, etc. So instead of being smooth purees, they are mashed or slightly blended, so they are thicker and have a different texture and consistency. He's also eating some of the breakfast bars and cookies (EnjoyLIfe brand, which is one of our favorite products!) that are more dense than the soft Snickerdoodles that he is used to. Eli has really responded well to this. The other day, he told Adam that he didn't like the sweet potatoes (because of the texture and consistency), but he ate them anyway! Adam had a major proud daddy moment!
I think one of the most difficult parts of this admission is the fact that Eli is older. He is such a smart kid anyway, but this time around, he is really struggling with being in a hospital for so long, not able to get out and do the normal things that we are so used to. I get anxious and have to leave every few days, even if it's just to go walk around a store or something. I can't imagine not being able to leave at all for an entire 1 to 1 1/2 months! He has hit a bit of a wall, which is normal for this point in the process. He's more clingy than normal and doesn't want to leave me or Adam. Meltdowns happen fairly regularly at this point. It's hard to imagine for some people, but for Eli.... eating isn't fun. It is stressful. It is hard work. It's a scary thing with a lot of bad memories.
But he's taking on the challenge like to super star that he is and We couldn't be prouder of him and all the hard work that he does each and every day. Even being here and seeing him struggle, I can't fully comprehend how he feels or what thoughts are going through his head. But I do know that he's a fighter. He may only be 7 years old, but this kid, my sweet, funny, fun-loving boy, is my hero and I'm proud to call him that. He's accomplished so much in his 7 years on this Earth and I can't wait to see the adventures and experiences the good Lord has planned for him.
First off, let me say just how proud I am of my family, as a whole. There are two major differences between this admission and Eli's last stay here back in 2012: We live MUCH closer now and Ella is here (I was pregnant with her during Eli's first admission). So this stay has definitely been a balancing act with Adam working and taking care of Ella then me being here with Eli and working from the hospital..... then the big switch every weekend with Adam staying with Eli and me going home to be with Ella for a day or two. It hasn't been easy, but we've found a pretty good rhythm and it has worked out really well. Today was also the first time that the kids really got to spend a good amount of time together. We attempted it last weekend, but Ella really didn't seem to like being at the hospital, so she and I headed back to Granbuy just an hour or so after she and Adam got here. So living closer this time around has definitely been a plus, but making sure that Ella doesn't get lost in the shuffle has been a big challenge. But with the temporary routine Adam and I have worked out, along with my Mom and Dave coming up for a few days to help us spoil (and take care of) the kids, we've managed really well! Eli and Ella got so excited when they first saw each other. It melted this Momma's heart!
And Eli.... WOW! I am SUPER proud of him, as we all are. After being at roughly the same weight for the past 2-3 years, he has gained almost 3 pounds since being here! I giggle when I tell people that he has a little 'pudge' in his belly now! That's something we've never really seen before and it's such a wonderful sight!!! The therapists and other professionals here have really been working hard to help Eli learn to eat, while also helping to manage his stress and anxiety. They seem to have found a good plan for introducing new foods and working them into Eli's diet. Hopefully in the next week or so, Adam and I will be introduced into meal times and will also be taught how to work their plan into our lives at home.
For those who don't know the process here, the first week or two is spent with Eli in a "Feeding Room" with a therapist. Parents do not go to feeds at this point because the therapists are trying to do several things at this point: they want to break any bad eating habits that the parents and kids may have as well as get an opportunity to observe the child and learn their eating habits, strengths and weaknesses. Then, about half-way through, parents are taken to an "Observation Room" where they can view feeding sessions and learn key phrases to use during meals and see how the therapists work through meals, especially rough spots when kiddos are resistant or having difficulty. The last phase it bringing the parents in to be involved in preparing meals and actually participating in meal times. So, hopefully we will start observing soon!
Their plan so far has been to introduce 'table versions' of the pureed foods that he is already eating, like sweet potato, carrots, pears, apples, etc. So instead of being smooth purees, they are mashed or slightly blended, so they are thicker and have a different texture and consistency. He's also eating some of the breakfast bars and cookies (EnjoyLIfe brand, which is one of our favorite products!) that are more dense than the soft Snickerdoodles that he is used to. Eli has really responded well to this. The other day, he told Adam that he didn't like the sweet potatoes (because of the texture and consistency), but he ate them anyway! Adam had a major proud daddy moment!
I think one of the most difficult parts of this admission is the fact that Eli is older. He is such a smart kid anyway, but this time around, he is really struggling with being in a hospital for so long, not able to get out and do the normal things that we are so used to. I get anxious and have to leave every few days, even if it's just to go walk around a store or something. I can't imagine not being able to leave at all for an entire 1 to 1 1/2 months! He has hit a bit of a wall, which is normal for this point in the process. He's more clingy than normal and doesn't want to leave me or Adam. Meltdowns happen fairly regularly at this point. It's hard to imagine for some people, but for Eli.... eating isn't fun. It is stressful. It is hard work. It's a scary thing with a lot of bad memories.
But he's taking on the challenge like to super star that he is and We couldn't be prouder of him and all the hard work that he does each and every day. Even being here and seeing him struggle, I can't fully comprehend how he feels or what thoughts are going through his head. But I do know that he's a fighter. He may only be 7 years old, but this kid, my sweet, funny, fun-loving boy, is my hero and I'm proud to call him that. He's accomplished so much in his 7 years on this Earth and I can't wait to see the adventures and experiences the good Lord has planned for him.
Tuesday, May 24, 2016
Playing Catch Up
It has been an incredibly long time since I've written anything on here. I think it said my last post was in June 2014! EEK! Life was in the fast lane and it seemed like we were constantly on the go. New jobs, new schools, new town.... Lots to explore and an entirely new routine to get accustomed to. And honestly, the past 2 years have really been great! Since moving to Granbury, the kids have been healthier than they have been in such a long time. And they have grown so much!
Eli is just finishing up 1st grade. This kiddo loves school! He is a fantastic reader and really enjoys reading anything he can get his hands on. Of course, Dr. Seuss is a favorite, as well as dinosaur books and Ninjago books! About a year ago, he also started playing golf! There is an amazing program here and two of our favorite people from church run it. Eli is such a natural and he really enjoys it. After playing 1 season of flag football, it didn't take long for us to decide that any kind of contact sport was not something we wanted to explore. So golf came along at a great time and has really been a saving grace! Most evenings, he'll be in the back yard chipping balls up on to the roof! He won a tournament last year and was even on the front page of the news paper! One thing that has always been true about our Eli.... He's an amazing kid; a true fighter and a little hero. His kind heart and sweet smile; God has blessed him and I pray his personality and spirit never change!
And then there's Ella! That little girl is a ball of energy running around! There's definitely never a dull moment with her! She is three now and is the definition of a "threenager"! Haha! Sassy, strong-willed, talkative, silly.... and absolutely amazing! We started her in dance this past fall. I love seeing her in her little tutu's and outfits. She's had fun, but we've discovered that dance is not her thing. She is in need of something more active and a little faster paced. We've joked that she will be our football player! She's actually surprised us and has been begging to play golf with Eli. So, she has some little clubs (passed down from some amazing friends) and she enjoys getting out in the backyard and playing around, too. Either way, I'm keeping the tutu's... She's just too cute in them!
I know I've said this before, but moving to Granbury was definitely a "God thing". This move was a difficult choice and it hasn't always been easy, but we know that God knew what He was doing when He led us here. We've gotten involved in an amazing church. The people there are an amazing support. They have wrapped us in love and acceptance. It's nice to truly know what "Church Home" really means. We're blessed to be a part of this church and are so happy to be raising our children to know God.
No matter how old you get, I don't think making new friends ever gets "easy". But we won the lottery in that arena! We met some pretty amazing people here. Their family has become our family. Our kids all love each other and it's an awesome feeling to have a couple that we mesh with so well! Our weekend bar-b-ques and pizza & wine nights are some of our favorite times!
I truly believe this move has played a huge part in our kid's health. Less stress, amazing doctors (and easier access to them) and the opportunities the kids have had here; I think it all plays a roll in their physical health and we're so happy to be where we are!
Eli is just finishing up 1st grade. This kiddo loves school! He is a fantastic reader and really enjoys reading anything he can get his hands on. Of course, Dr. Seuss is a favorite, as well as dinosaur books and Ninjago books! About a year ago, he also started playing golf! There is an amazing program here and two of our favorite people from church run it. Eli is such a natural and he really enjoys it. After playing 1 season of flag football, it didn't take long for us to decide that any kind of contact sport was not something we wanted to explore. So golf came along at a great time and has really been a saving grace! Most evenings, he'll be in the back yard chipping balls up on to the roof! He won a tournament last year and was even on the front page of the news paper! One thing that has always been true about our Eli.... He's an amazing kid; a true fighter and a little hero. His kind heart and sweet smile; God has blessed him and I pray his personality and spirit never change!
And then there's Ella! That little girl is a ball of energy running around! There's definitely never a dull moment with her! She is three now and is the definition of a "threenager"! Haha! Sassy, strong-willed, talkative, silly.... and absolutely amazing! We started her in dance this past fall. I love seeing her in her little tutu's and outfits. She's had fun, but we've discovered that dance is not her thing. She is in need of something more active and a little faster paced. We've joked that she will be our football player! She's actually surprised us and has been begging to play golf with Eli. So, she has some little clubs (passed down from some amazing friends) and she enjoys getting out in the backyard and playing around, too. Either way, I'm keeping the tutu's... She's just too cute in them!
I know I've said this before, but moving to Granbury was definitely a "God thing". This move was a difficult choice and it hasn't always been easy, but we know that God knew what He was doing when He led us here. We've gotten involved in an amazing church. The people there are an amazing support. They have wrapped us in love and acceptance. It's nice to truly know what "Church Home" really means. We're blessed to be a part of this church and are so happy to be raising our children to know God.
No matter how old you get, I don't think making new friends ever gets "easy". But we won the lottery in that arena! We met some pretty amazing people here. Their family has become our family. Our kids all love each other and it's an awesome feeling to have a couple that we mesh with so well! Our weekend bar-b-ques and pizza & wine nights are some of our favorite times!
I truly believe this move has played a huge part in our kid's health. Less stress, amazing doctors (and easier access to them) and the opportunities the kids have had here; I think it all plays a roll in their physical health and we're so happy to be where we are!
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