Go to Gunner's facebook page here.
Happy Friday everyone!
Friday, April 26, 2013
Gunner's facebook page..
is officially up and running. I want to thank Christie Zink, a wonderful EB advocate for helping with the design of the page and all the helpful info that you will find there. She is such a blessing to the EB community! Please feel free to "like" and "share" Gunner's story. His page will be more of day to day updates on Gunner. I will still be posting on the blog as well. Thank you all so much for all the prayers and support for our lil prince. :)
Go to Gunner's facebook page here.
Happy Friday everyone!
Go to Gunner's facebook page here.
Happy Friday everyone!
Tuesday, April 23, 2013
Just wanted to say...
Thank you to everyone that reads Gunner's blog and keeps up to date on him. Thank you all for the prayers, the gifts, the kind words, and everything in between. You do not realize just how helpful everything is. Cody and I are so proud of our strong little prince and it brings us much comfort to know that Gunner is loved by others as well. <3
Gunner is doing great right now. He is finally trying more new foods. Although he still has a texture aversion, he is eating things he does like to eat, more! He also learned how to drink from a straw on Saturday! He hasn't done it much today, but he is still doing it and I am so thankful!
His kid walk is doing him good! He knows how to take the big wheels on it and roll backwards and sometimes forwards. He is slowly learning how to put his feet forward and not drag them when he moves the chair. Steady progress I would say! The best part about it is, the kid walk hasn't broke down Gunner's skin anywhere so far.
Last Saturday, we went and got Gunner's hair trimmed, as you can see, it was getting pretty long in the front! It wasn't a huge haircut, but his first one none the less! Now, when we put his hair in his Mohawk, it is shorter. :)
Before
After
The lady at the bakery in the grocery store today gave Gunner a cookie. He ate all the icing off of it :)
Gunner's facebook page is still in the works, but will be up soon. I am very grateful to have the help of a WONDERFUL EB advocate to help me design it to bring maximum awareness to everyone who visits. I promise as soon as we "launch" the page, I will post a link to the blog to let everyone know how to follow our prince. Thank you everyone!
Gunner playing in his giant bandage supply shipping box. :)
Gunner is doing great right now. He is finally trying more new foods. Although he still has a texture aversion, he is eating things he does like to eat, more! He also learned how to drink from a straw on Saturday! He hasn't done it much today, but he is still doing it and I am so thankful!
His kid walk is doing him good! He knows how to take the big wheels on it and roll backwards and sometimes forwards. He is slowly learning how to put his feet forward and not drag them when he moves the chair. Steady progress I would say! The best part about it is, the kid walk hasn't broke down Gunner's skin anywhere so far.
After
Gunner's facebook page is still in the works, but will be up soon. I am very grateful to have the help of a WONDERFUL EB advocate to help me design it to bring maximum awareness to everyone who visits. I promise as soon as we "launch" the page, I will post a link to the blog to let everyone know how to follow our prince. Thank you everyone!
Saturday, April 6, 2013
Big things to share with Gunner's readers...
First and foremost, we have Gunner's genetic testing results back! We got them back last week. First, we told our close family, but now we want to tell all of the amazing people that have helped make this test possible. Gunner's test came back and verified through DNA that he does in fact have RDEB. (We already knew this from his skin biopsy, but they always confirm it through DNA). We also found out that Gunner has two separate mutations in his DNA that cause his DNA. One comes from Cody and one comes from me. (Thus making it a recessive form of EB). In the report, I was expecting it to say, "This patient's DNA shows that he has _____ subtype." Wasn't that simple... The report that we got back told us the two mutations. But the two mutation "names" were made up of a bunch of jumbled letters and numbers and symbols combined. I then went to a fellow EB mother (whom I respect so much from her vast knowledge about EB and genetics!) and asked her if she could possibly "interpret" the report for me. I sent her a picture message of the report and within minutes she found links about Gunner's specific mutations. The first mutation is a RDEB-HS or (Hallopeau-Siemens) mutation. She then looked up the second mutation. Sure enough, that one too is a RDEB-HS mutation.
This is from http://epidermolysis-bullosa.com/Understand-the-pathology/Dystrophic-EB-DEB:
The Hallopeau-Siemens (RDEB-HS) form of EB is the most severe, since it causes major disability. It manifests initially with a general eruption of blisters, however these are predominantly localised on the extremities of the limbs. It includes dental complications and mucous lesions including oral, anal and esophageal stenosis which can cause malnutrition and retard growth. Scarring of the cutaneous lesions is slow and abnormal and is accompanied by milia, terminating in the characteristic atrophic lesions that cause disability (syndactylies, contraction when flexing the limbs). During childhood, repeated blistering and long periods of pathological scarring result in a significant handicap: it becomes more and more difficult to walk and perform everyday movements. Anal erosion makes defecation painful. Death often occurs during the first three decades of life as a result of infectious complications, malnutrition with anemia, retarded growth and even secondary amyloidosis. Spinocellular carcinoma often appears on the most affected areas of skin and mucous membrane.
So, not good news. Frankly, Cody and I were quite shocked that Gunner has the most severe subtype. BUT, the way we look at it is, Gunner has had this subtype since he was given to us by God. We are just putting it on paper and finding out now. The other kiddos and adults with EB that I have seen pictures of that have RDEB-HS as well all present differently. Some genetically have the worst subtype of EB, but only have to wrap areas that have wounds, others, have the worst subtype and have to wrap completely head to toe whether there is a wound there or not. That is the weird thing about EB. You can put two kids that have the same type AND subtype, and they will not look the same or have wounds in the same areas. All EB kids and adults are different.
Cody and I want to thank EVERY single person that contributed in one way or another to help us raise the money to get these results for our Gunner. Without the generosity of so many people, it wouldn't have happened. THANK YOU!
We had a great Easter and hope you all did too! Cody pushed Gunner around in his little blue car to hunt eggs and put them in the trunk of the car. Gunner was squealing and laughing the whole time. He kept picking up the eggs, opening them and throwing them.
Can you tell he helped dye Easter eggs by the color of his dressings??
We went to the Colorado Children's hospital for the EB clinic on the 3rd. We learned quite a bit. The derm team said that his skin and skin care was looking good. They looked at his feet and said that for EB feet they look good. They agreed that his nutrition is something that we are going to have to really keep a close eye on. They told us to start him on pediasure as well as still offering table foods. (He is doing better and trying most things that are puree consistency of course.) They said that pediasure will is the last resort as far as getting him to gain enough weight on his own. This is hard for him since he doesn't take a whole lot of nutrition by mouth and what he does take by formula and table food, all his calories go to wound healing first and growth second. In the next visit, since he will be on pediasure for 6 months, we will see where he is at on the growth chart and may start recommending a G-tube. Right now he is in the 5th percentile. So, we are praying he gains weight! I know he looks chunky in pictures, but he is short, so that makes him fall into a low category.
Waiting on the derm team at the EB clinic..
They gave us some prescriptions. Two itching meds. One for daytime and one for night (because this one will make him drowsy). Itching is important to control because Gunner's skin itches all the time day and night and even while he is sleeping. Even with no nails, he still breaks open wounds just from the rubbing motion.We also got a prescription for some numbing medicine to help with Gunner's mouth blisters and ulcers. This is going to be so helpful when he can't eat because of mouth blisters. They put him on a multi-vitamin with zinc and iron as well as a prescription for extra iron to help replace all the blood that he loses from blisters and wounds. This is important because EBer's tend to be a little anemic and need blood and iron transfusions. At last check Gunner was right under the "normal" level and technically considered anemic. They also put him on Vitamin D. He needs this because Vitamin D you get from the sun and being outside. Because he can't be in the sun much (because heat causes blisters too) and if he is in the sun, most of his body is covered in bandages, EBer's don't get the adequate amount needed on their own. They also put him back on his reflux medication. Although his reflux has slowed down a lot, he still gets it from time to time. It's important to control this because the reflux burns the esophagus and is a main cause of strictures in the throat.
The PT said his hands look great, no signs of webbing or fusing yet-so that is good. They gave him some night splints to wear to keep his foot in the 90 degree angle it needs to be in. His heels are contracting up making his foot drop down all the time. When he tries to stand, his foot doesn't stand flat. Shoes would (hopefully) fix this. But his foot had never been in a shoe, until a couple days ago! We found these pair of Adidas at the mall in Aurora, and they fit great and haven't caused any blisters yet! When we would stand Gunner up on his feet before, he would whine within seconds because it hurt to put pressure on his feet. So far with his shoes, he hasn't whined! YAY!!! He will get his kid walk Tuesday, so Cody and I are praying that with shoes, splints, and his kid walk, he will take off in no time! We can't wait!
Playing in the playroom at Ronald McDonald House...
They also said that it seems Gunner has developed a food aversion with textures and that we will have to really work with him and be patient as we keep offering new foods and help him to like textures. As far as the anxiety goes that he has been having, we were told he is too young to really do anything. To keep offering comfort for Gunner during bandage changes and all times of day and reassure him that we are doing this because we have to keep him healthy. I know with time and as he gets older, he will understand.
It is a ten and a half hour drive to and from Oklahoma to Colorado. It turns into about 11 to 11 and a half with the stopping for Gunner. This is Cody and Gunner on the way to Colorado.
And on our way back... He has beef jerky in his hand. We bit off the ends so they weren't rough thinking he would be able to suck on it and taste it. He liked the taste and sucked on it for a while, but paid the price for it in blood blisters all over his tongue and mouth afterwards... :( Mommy and daddy felt so bad..
We thankfully were blessed to stay at the Ronald McDonald House again! How awesome is that?! They are all so sweet and truly care about the people there. Here is Gunner's latest picture with Ronald McDonald! Remember how I said we were going to make this a tradition? :)
Overall it was a good and informative trip. We also got to see two other families. One at the RMH and one at the clinic. Both families were sweet. They both had boys that have RDEB as well. Both were walking and eating soft things by mouth. Cody and I were so thrilled to see that. We both literally just stared at them watching them walk and play. We believe and can't wait for that day for Gunner!
I am thinking about making Gunner a Facebook page. I have been asked ever since Gunner was pretty young if he has one or if I am going to make one. At first, I wasn't as open to sharing wound pictures and other details of Gunner and his struggles, but now I am to the point where all I want to do is educate and get awareness out there about EB so we can find the cure for all EBers. I think this will be great for awareness since most people are already on Facebook. They can "like" the page and I can share links and stories and they can share and that will just start a chain of awareness. Also, I will post updates everyday on how Gunner is and what he did, whether good or bad. Not that I will stop updating the blog, because I won't. I just feel like not everyday something happens that is "blogpost" worthy, so I wait until something "big" happens to post about, then it turns into a huge post. I feel like I will be able to post smaller, simpler posts on Facebook everyday and then post the same kinds of things on his blog. I will make a post soon with a link to Gunner's page. Thank you all so much for following our Butterfly Prince's story and all the kind words and support we receive! Can't wait to join you on Facebook soon!
Love,
This is from http://epidermolysis-bullosa.com/Understand-the-pathology/Dystrophic-EB-DEB:
The Hallopeau-Siemens (RDEB-HS) form of EB is the most severe, since it causes major disability. It manifests initially with a general eruption of blisters, however these are predominantly localised on the extremities of the limbs. It includes dental complications and mucous lesions including oral, anal and esophageal stenosis which can cause malnutrition and retard growth. Scarring of the cutaneous lesions is slow and abnormal and is accompanied by milia, terminating in the characteristic atrophic lesions that cause disability (syndactylies, contraction when flexing the limbs). During childhood, repeated blistering and long periods of pathological scarring result in a significant handicap: it becomes more and more difficult to walk and perform everyday movements. Anal erosion makes defecation painful. Death often occurs during the first three decades of life as a result of infectious complications, malnutrition with anemia, retarded growth and even secondary amyloidosis. Spinocellular carcinoma often appears on the most affected areas of skin and mucous membrane.
So, not good news. Frankly, Cody and I were quite shocked that Gunner has the most severe subtype. BUT, the way we look at it is, Gunner has had this subtype since he was given to us by God. We are just putting it on paper and finding out now. The other kiddos and adults with EB that I have seen pictures of that have RDEB-HS as well all present differently. Some genetically have the worst subtype of EB, but only have to wrap areas that have wounds, others, have the worst subtype and have to wrap completely head to toe whether there is a wound there or not. That is the weird thing about EB. You can put two kids that have the same type AND subtype, and they will not look the same or have wounds in the same areas. All EB kids and adults are different.
Cody and I want to thank EVERY single person that contributed in one way or another to help us raise the money to get these results for our Gunner. Without the generosity of so many people, it wouldn't have happened. THANK YOU!
We had a great Easter and hope you all did too! Cody pushed Gunner around in his little blue car to hunt eggs and put them in the trunk of the car. Gunner was squealing and laughing the whole time. He kept picking up the eggs, opening them and throwing them.
We went to the Colorado Children's hospital for the EB clinic on the 3rd. We learned quite a bit. The derm team said that his skin and skin care was looking good. They looked at his feet and said that for EB feet they look good. They agreed that his nutrition is something that we are going to have to really keep a close eye on. They told us to start him on pediasure as well as still offering table foods. (He is doing better and trying most things that are puree consistency of course.) They said that pediasure will is the last resort as far as getting him to gain enough weight on his own. This is hard for him since he doesn't take a whole lot of nutrition by mouth and what he does take by formula and table food, all his calories go to wound healing first and growth second. In the next visit, since he will be on pediasure for 6 months, we will see where he is at on the growth chart and may start recommending a G-tube. Right now he is in the 5th percentile. So, we are praying he gains weight! I know he looks chunky in pictures, but he is short, so that makes him fall into a low category.
They gave us some prescriptions. Two itching meds. One for daytime and one for night (because this one will make him drowsy). Itching is important to control because Gunner's skin itches all the time day and night and even while he is sleeping. Even with no nails, he still breaks open wounds just from the rubbing motion.We also got a prescription for some numbing medicine to help with Gunner's mouth blisters and ulcers. This is going to be so helpful when he can't eat because of mouth blisters. They put him on a multi-vitamin with zinc and iron as well as a prescription for extra iron to help replace all the blood that he loses from blisters and wounds. This is important because EBer's tend to be a little anemic and need blood and iron transfusions. At last check Gunner was right under the "normal" level and technically considered anemic. They also put him on Vitamin D. He needs this because Vitamin D you get from the sun and being outside. Because he can't be in the sun much (because heat causes blisters too) and if he is in the sun, most of his body is covered in bandages, EBer's don't get the adequate amount needed on their own. They also put him back on his reflux medication. Although his reflux has slowed down a lot, he still gets it from time to time. It's important to control this because the reflux burns the esophagus and is a main cause of strictures in the throat.
The PT said his hands look great, no signs of webbing or fusing yet-so that is good. They gave him some night splints to wear to keep his foot in the 90 degree angle it needs to be in. His heels are contracting up making his foot drop down all the time. When he tries to stand, his foot doesn't stand flat. Shoes would (hopefully) fix this. But his foot had never been in a shoe, until a couple days ago! We found these pair of Adidas at the mall in Aurora, and they fit great and haven't caused any blisters yet! When we would stand Gunner up on his feet before, he would whine within seconds because it hurt to put pressure on his feet. So far with his shoes, he hasn't whined! YAY!!! He will get his kid walk Tuesday, so Cody and I are praying that with shoes, splints, and his kid walk, he will take off in no time! We can't wait!
They also said that it seems Gunner has developed a food aversion with textures and that we will have to really work with him and be patient as we keep offering new foods and help him to like textures. As far as the anxiety goes that he has been having, we were told he is too young to really do anything. To keep offering comfort for Gunner during bandage changes and all times of day and reassure him that we are doing this because we have to keep him healthy. I know with time and as he gets older, he will understand.
It is a ten and a half hour drive to and from Oklahoma to Colorado. It turns into about 11 to 11 and a half with the stopping for Gunner. This is Cody and Gunner on the way to Colorado.
And on our way back... He has beef jerky in his hand. We bit off the ends so they weren't rough thinking he would be able to suck on it and taste it. He liked the taste and sucked on it for a while, but paid the price for it in blood blisters all over his tongue and mouth afterwards... :( Mommy and daddy felt so bad..
We thankfully were blessed to stay at the Ronald McDonald House again! How awesome is that?! They are all so sweet and truly care about the people there. Here is Gunner's latest picture with Ronald McDonald! Remember how I said we were going to make this a tradition? :)
Overall it was a good and informative trip. We also got to see two other families. One at the RMH and one at the clinic. Both families were sweet. They both had boys that have RDEB as well. Both were walking and eating soft things by mouth. Cody and I were so thrilled to see that. We both literally just stared at them watching them walk and play. We believe and can't wait for that day for Gunner!
I am thinking about making Gunner a Facebook page. I have been asked ever since Gunner was pretty young if he has one or if I am going to make one. At first, I wasn't as open to sharing wound pictures and other details of Gunner and his struggles, but now I am to the point where all I want to do is educate and get awareness out there about EB so we can find the cure for all EBers. I think this will be great for awareness since most people are already on Facebook. They can "like" the page and I can share links and stories and they can share and that will just start a chain of awareness. Also, I will post updates everyday on how Gunner is and what he did, whether good or bad. Not that I will stop updating the blog, because I won't. I just feel like not everyday something happens that is "blogpost" worthy, so I wait until something "big" happens to post about, then it turns into a huge post. I feel like I will be able to post smaller, simpler posts on Facebook everyday and then post the same kinds of things on his blog. I will make a post soon with a link to Gunner's page. Thank you all so much for following our Butterfly Prince's story and all the kind words and support we receive! Can't wait to join you on Facebook soon!
Thursday, March 21, 2013
I find myself dreaming...
Of the cure (or even a successful treatment for that matter) for EB more and more everyday. Because, every single day that goes by, EB gets harder. Especially for our Gunner, but also for Cody and I having to watch what EB is doing to our prince. Those of you that are close to us are probably thinking to yourselves, "What? I think Gunner is doing pretty good right now", and your right he is, in most things. His skin I would say is decent right now. The usual worst places are open and draining, and it seems like everything is O.K. But, the thing is, as he is getting older and more aware of what is going on, EB is affecting him emotionally also. It seems that once we get one problem cleared up, here comes a new one.
It is safe to say now, that Gunner's anxiety is through the roof. As you all know, I stay at home with Gunner while Cody works. Which means I am the one that does dressing changes, the baths, the diaper changes, the blister popping with the horrifically large needle. I do everything. To Gunner, I am the one that represents pain and being uncomfortable. I am the one he is constantly watching, seeing what I have in my hand now. No lie, Gunner has gotten to where he starts whimpering (sometimes even tears) when he sees me come to him and pick him up. No mother should ever have to explain to their child that "mommy isn't going to do anything that hurts baby, I just want to hold you" before their child will be calm in their arms. It breaks my heart- no-shatters my heart that he is constantly.... nervous around me. Here is some of the latest wound pics:
His whole foot was a blister here.
The sound of a package opening, the sight of a needle, or the bath tub, or the container of bleach, a diaper, scissors, any dressing product sends Gunner into freak out mode, On top of the daily EB problems, he is teething. Which, don't get me wrong, I am THRILLED about, but it makes blisters on his gums before the teeth come in, and his mouth hurts probably double what a non-EB child would when teething. We have to put orajel on his gum so that it feels better for him and gives some relief, and even the pad of our finger against his gum opens new areas on his mouth. Especially when I don't get my finger in and out fast enough and he jerks his head back and forth. Sometimes the pad of my finger brushes his tongue and he then gets a huge blood blister on his tongue and can't eat, but yet he is hungry.
We have also been seeing Gunner getting frustrated with himself. Besides his EB, he is a "normal" child. He still has the urge, like any 15 month old would, to get into everything, and pick toys himself, and open drawers and such. In order to do those things, Cody and I have to figure out what it is he is wanting. He will whine and whine and Cody and I go through 1001 things (usually we start with EB problems that could be happening, then to diaper, then hungry, then assorted toys) before we actually get to what he is wanting. Thankfully, he now knows what "show mommy/daddy" means. So we ask him to show us, and even still it takes a little bit to know what he is wanting exactly. In the process of waiting on mommy and daddy to figure out what is going on, he will slap himself, or hit one of us, or try to take off some of his bandages, or simply scream and shake his head and fists. He literally looks like a little boy with just... rage built deep inside. Red faced, screaming, hands balled into fists, and shaking. I absolutely hate it. Not because of his actions, just that he is having such a hard time INSIDE too. We have been teaching him to sign words like "more" and "please" and "drink" and "eat" and he is smart and remembers them when prompted, but to just do it to let us know what he wants before becoming frustrated, we are not there yet. But, we are working on it. He still isn't walking yet, but he is somewhat scooting around the floor. He will reach really far for something, then he is so far stretched his bottom and legs scoot up to his arms to then he is moved forward. He doesn't know to scoot for something he wants deliberately though. (Some of that is that he knows someone will eventually get it for him, but when I am with him, I make sure what he wants is within reach and let him get it on his own, then make it a big celebration when he does.) So, he has no mobility yet, and doesn't know exactly how to communicate with us for what he wants, therefore, he is frustrated. Frustration makes him act out in behavior. So it is this vicious cycle.
When I tell people we are doing this for him, or that for him I often get the response, "Well, will he really need that?" "I thought EB was a skin condition?". Yes, EB IS a skin condition, but, it affects people on the inside just as much physically as it does emotionally and we are seeing that first hand. If you read the above, hopefully you understand a little better.
Gunner's kid walk (the assistive chair that is going to help him learn to walk that I posted about a while ago) has finally been approved by Oklahoma Medicaid. It was ordered by the company last Wednesday and we were told it takes 2-3 weeks to make. So we should have it soon! Also, we were seen by an orthotist a week ago today. Gunner's feet turn in all the time towards one another. It is the default position that he keeps them in due to them being wrapped all the time. I have been wrapping the opposite way to pull them out and it has helped some but not much. He is starting to stand and put a little pressure on his feet in his walker. Which is good but his feet most of the time turn in and he ends up putting pressure on the sides of his foot.
The blister that formed from the strap from crocs that we tried on his foot.
So, we thought shoes would help, and they probably would keep them straight while he is standing in his walker and learning how to walk, but we ran into a problem. He needs a size 5 for them to stay on his feet. But a size 5 is too tight around his bandages and there is NO way we can just put his foot into a shoe. Pressure and tightness makes blisters too. SO that is a no go. We move up a size to a 5 and a half, then a 6, and they would work, but his ankle is starting to contract. Meaning his heel chords in his ankle shorten lifting his ankle up. So that his foot doesn't make the 90 degree angle we have and doesn't lay flat. So his foot wont hold in a 5 and a half or a 6. Back to the orthopedist, we explained all this to her. She was extremely helpful. Gunner is getting some splints that have tread on the bottom and look like a boot you would wear after a surgery or something. They just aren't black. They are lined with sheepskin, which is what will touch his bandages, then a foam on top of that, then the Velcro straps to hold the splint on. With the splints and the kid walk, we are praying our lil guy takes off soon and never looks back. Both things should be ready around the same time.
Gunner went on a fishing trip with daddy a couple weekends ago. Not far, just down the road, but he loved it. He loves being outside in general. Loves looking at animals. We have a screen door now that Gunner loves to look out. The pig pen is right in view from the front door. The other day I was looking outside with Gunner and said "Gunner pigs go, (oink oink)" and said it a couple more times. Then I changed it up and asked Gunner what sound a piggy makes. He then made his own piggy noise (sounds more like when you have something in your throat and can't get it out) lol it is so cute. Now, when he sees the pigs, even before I do, he makes his piggy noise. Gunner loves animals so much, we wanted to get him a small dog to play with. Thinking about it, we decided not to. For one, dogs will jump and play rough. If we raised it to be gentle, we would still have to go through the puppy stage and deal with blisters. There is no way to prevent not one blister. I asked the opinion of the EB community on who had dogs, what breed, etc, and a lot of people have dogs. The only thing they said was a continued problem after training them, was that even dogs that barely shed the hair gets under bandages. It sounds crazy, but it gets through all the layers of bandages and then embeds in the skin. When the skin heals, it grows over that dog hair. Which can cause a lot of problems and then parents have to dig out the hair with a needle. I believe it, because at times when I have unwrapped Gunner's arm dressings I find one of his own hairs. Not under the skin just on it, but still. Plus, if a wound was open at the time, and a dog hair embedded on it, that would be totally unsanitary.We could rescue an older dog, but we just really don't have the room right now. We will probably hold off getting a dog until we move. So, we decided to get him a hamster. Yes, a hamster. It is small, requires little care for right now, and Gunner can look at it and play without actually holding it. We bought it a big cage, with all these tubes and things to run in and a running wheel. We also got it a ball that it runs around the house in. Gunner loves that. He is gentle with it now, but at first he didn't know what to think. He likes bouncing balls and thought that the hamsters exercise ball was one he could play with and he threw it across the living room. The hamster, (or "squishy" as we named him) is still alive and kickin.
Gunner making the "piggy sound".
Sleeeeeeepy Gunner
Gunner and daddy playing games together at the Wal-Mart gameroom. Cody is actually the one that asked me if I had money for any games haha.
Gunner and daddy at Incredible Pizza. We went with Papa Bill and Grandma Kari and Uncle Wyatt and Kolton. He had fun on the horse.
Gunner eating a cookie. He is finally trying more things. But only things we eat. He gets excited about seeing food or drink and wants what we have. He will not eat baby food though. I have even tried making my own and he just does not like it. But he eats mashed potatoes and gravy really well. Anything we have I chop up real fine and he will take 4-5 bites of it. For him that is really good. Things like a cracker or cookie or cheeto, he sucks on rather than bites down on it. He doesn't know to mash the food so he sucks until it is soggy and then swallows. It works for us now. We go back to see the pediatrician on the 25th to check Gunner's growth. Last time at his 12 month well child appointment, he was in the 9th percentile. His ped wanted him on formula as his main nutrition until 15 months then we would recheck. I'm hoping the ped is happy with his growth. But at the same time, he doesn't eat enough now to sustain his weight only with solids let alone gain any weight. That is why we are going to see a speech therapist again. We have a home appointment with the new ST next Tuesday, and I am hoping she can give us some new ways to help Gunner. He has really developed a fear of things going into his mouth. He also like I said doesn't know to mash his food. His tongue being fused to the bottom of his mouth doesn't allow him to form a bolus (the ball of food you make with your tongue before you swallow.) to eat. He is also getting teeth now (his first two teeth are through the gum at 15 months, yay!) but all and I mean ALL his teeth are coming in at once. His first two teeth were his two side teeth on top. Now, his jaw teeth on top are the closest to coming in next. Plus there are 3-4 more bumps on top that I can feel under the gum and 4-5 on bottom that I can feel right under the gums. Plus his mouth is always very open and sore and with blisters so his teeth on top of all that is making him cranky pants lately. Who wouldn't be?
I have also started watching my best friend's son, Landon during the week. He is 4 months older than Gunner. Gunner and Landon both are adjusting well. Needless to say I have been busier, but I love it and am so happy that Kara has trusted me to watch the lil guy. :)
Yesterday in the mail, we received a package from a sweet EB mother. She found online some all natural mentholated rub and got some for Gunner and sent a scentsy buddy (a monkey). The scentsy buddy was part of a fundraiser for EB babies a while back and we are so thankful for everyone that participated! The mentholated rub is needed because it is a natural way that other EB families have found to relieve itching instead of putting their child on medication. It doesn't work for every family of course. At first, we tried regular OTC mentholated rub, and Gunner had a reaction to it. SO far with this natural version we have had no reactions and it seems to have relieved the itch. Praise God! Itching is very common in EB. Wounds that are healing (sometimes even raw ones) itch very intensely. It makes the person wake up at night even to itch sometimes not actually "waking up" and scratching through bandages down to the skin. Only to wake up and have another open wound and no bandages on anymore. So controlling the itching is very important. Thank you SooAnn!
Until next time,
It is safe to say now, that Gunner's anxiety is through the roof. As you all know, I stay at home with Gunner while Cody works. Which means I am the one that does dressing changes, the baths, the diaper changes, the blister popping with the horrifically large needle. I do everything. To Gunner, I am the one that represents pain and being uncomfortable. I am the one he is constantly watching, seeing what I have in my hand now. No lie, Gunner has gotten to where he starts whimpering (sometimes even tears) when he sees me come to him and pick him up. No mother should ever have to explain to their child that "mommy isn't going to do anything that hurts baby, I just want to hold you" before their child will be calm in their arms. It breaks my heart- no-shatters my heart that he is constantly.... nervous around me. Here is some of the latest wound pics:
The sound of a package opening, the sight of a needle, or the bath tub, or the container of bleach, a diaper, scissors, any dressing product sends Gunner into freak out mode, On top of the daily EB problems, he is teething. Which, don't get me wrong, I am THRILLED about, but it makes blisters on his gums before the teeth come in, and his mouth hurts probably double what a non-EB child would when teething. We have to put orajel on his gum so that it feels better for him and gives some relief, and even the pad of our finger against his gum opens new areas on his mouth. Especially when I don't get my finger in and out fast enough and he jerks his head back and forth. Sometimes the pad of my finger brushes his tongue and he then gets a huge blood blister on his tongue and can't eat, but yet he is hungry.
We have also been seeing Gunner getting frustrated with himself. Besides his EB, he is a "normal" child. He still has the urge, like any 15 month old would, to get into everything, and pick toys himself, and open drawers and such. In order to do those things, Cody and I have to figure out what it is he is wanting. He will whine and whine and Cody and I go through 1001 things (usually we start with EB problems that could be happening, then to diaper, then hungry, then assorted toys) before we actually get to what he is wanting. Thankfully, he now knows what "show mommy/daddy" means. So we ask him to show us, and even still it takes a little bit to know what he is wanting exactly. In the process of waiting on mommy and daddy to figure out what is going on, he will slap himself, or hit one of us, or try to take off some of his bandages, or simply scream and shake his head and fists. He literally looks like a little boy with just... rage built deep inside. Red faced, screaming, hands balled into fists, and shaking. I absolutely hate it. Not because of his actions, just that he is having such a hard time INSIDE too. We have been teaching him to sign words like "more" and "please" and "drink" and "eat" and he is smart and remembers them when prompted, but to just do it to let us know what he wants before becoming frustrated, we are not there yet. But, we are working on it. He still isn't walking yet, but he is somewhat scooting around the floor. He will reach really far for something, then he is so far stretched his bottom and legs scoot up to his arms to then he is moved forward. He doesn't know to scoot for something he wants deliberately though. (Some of that is that he knows someone will eventually get it for him, but when I am with him, I make sure what he wants is within reach and let him get it on his own, then make it a big celebration when he does.) So, he has no mobility yet, and doesn't know exactly how to communicate with us for what he wants, therefore, he is frustrated. Frustration makes him act out in behavior. So it is this vicious cycle.
When I tell people we are doing this for him, or that for him I often get the response, "Well, will he really need that?" "I thought EB was a skin condition?". Yes, EB IS a skin condition, but, it affects people on the inside just as much physically as it does emotionally and we are seeing that first hand. If you read the above, hopefully you understand a little better.
So, we thought shoes would help, and they probably would keep them straight while he is standing in his walker and learning how to walk, but we ran into a problem. He needs a size 5 for them to stay on his feet. But a size 5 is too tight around his bandages and there is NO way we can just put his foot into a shoe. Pressure and tightness makes blisters too. SO that is a no go. We move up a size to a 5 and a half, then a 6, and they would work, but his ankle is starting to contract. Meaning his heel chords in his ankle shorten lifting his ankle up. So that his foot doesn't make the 90 degree angle we have and doesn't lay flat. So his foot wont hold in a 5 and a half or a 6. Back to the orthopedist, we explained all this to her. She was extremely helpful. Gunner is getting some splints that have tread on the bottom and look like a boot you would wear after a surgery or something. They just aren't black. They are lined with sheepskin, which is what will touch his bandages, then a foam on top of that, then the Velcro straps to hold the splint on. With the splints and the kid walk, we are praying our lil guy takes off soon and never looks back. Both things should be ready around the same time.
Gunner went on a fishing trip with daddy a couple weekends ago. Not far, just down the road, but he loved it. He loves being outside in general. Loves looking at animals. We have a screen door now that Gunner loves to look out. The pig pen is right in view from the front door. The other day I was looking outside with Gunner and said "Gunner pigs go, (oink oink)" and said it a couple more times. Then I changed it up and asked Gunner what sound a piggy makes. He then made his own piggy noise (sounds more like when you have something in your throat and can't get it out) lol it is so cute. Now, when he sees the pigs, even before I do, he makes his piggy noise. Gunner loves animals so much, we wanted to get him a small dog to play with. Thinking about it, we decided not to. For one, dogs will jump and play rough. If we raised it to be gentle, we would still have to go through the puppy stage and deal with blisters. There is no way to prevent not one blister. I asked the opinion of the EB community on who had dogs, what breed, etc, and a lot of people have dogs. The only thing they said was a continued problem after training them, was that even dogs that barely shed the hair gets under bandages. It sounds crazy, but it gets through all the layers of bandages and then embeds in the skin. When the skin heals, it grows over that dog hair. Which can cause a lot of problems and then parents have to dig out the hair with a needle. I believe it, because at times when I have unwrapped Gunner's arm dressings I find one of his own hairs. Not under the skin just on it, but still. Plus, if a wound was open at the time, and a dog hair embedded on it, that would be totally unsanitary.We could rescue an older dog, but we just really don't have the room right now. We will probably hold off getting a dog until we move. So, we decided to get him a hamster. Yes, a hamster. It is small, requires little care for right now, and Gunner can look at it and play without actually holding it. We bought it a big cage, with all these tubes and things to run in and a running wheel. We also got it a ball that it runs around the house in. Gunner loves that. He is gentle with it now, but at first he didn't know what to think. He likes bouncing balls and thought that the hamsters exercise ball was one he could play with and he threw it across the living room. The hamster, (or "squishy" as we named him) is still alive and kickin.
Gunner making the "piggy sound".
Sleeeeeeepy Gunner
Gunner and daddy at Incredible Pizza. We went with Papa Bill and Grandma Kari and Uncle Wyatt and Kolton. He had fun on the horse.
I have also started watching my best friend's son, Landon during the week. He is 4 months older than Gunner. Gunner and Landon both are adjusting well. Needless to say I have been busier, but I love it and am so happy that Kara has trusted me to watch the lil guy. :)
Yesterday in the mail, we received a package from a sweet EB mother. She found online some all natural mentholated rub and got some for Gunner and sent a scentsy buddy (a monkey). The scentsy buddy was part of a fundraiser for EB babies a while back and we are so thankful for everyone that participated! The mentholated rub is needed because it is a natural way that other EB families have found to relieve itching instead of putting their child on medication. It doesn't work for every family of course. At first, we tried regular OTC mentholated rub, and Gunner had a reaction to it. SO far with this natural version we have had no reactions and it seems to have relieved the itch. Praise God! Itching is very common in EB. Wounds that are healing (sometimes even raw ones) itch very intensely. It makes the person wake up at night even to itch sometimes not actually "waking up" and scratching through bandages down to the skin. Only to wake up and have another open wound and no bandages on anymore. So controlling the itching is very important. Thank you SooAnn!
Until next time,
Tuesday, February 12, 2013
Gunner has been doing...
good lately. He is quite the character! He is so full of love, and life. I love him so dearly. I wanted to let you all know that Gunner's insurance issues have been resolved, Praise God! He is now on a different type of insurance he already had that is specifically made for children with a disability. Now, if he will need some type of formula like pediasure or boost (we will know at his 15 month check up in March depending on his weight then) they will pay for it. Also, they will pay for any type of assistive device he may need. As well as diapers (if for some reason he continued to need them past potty training age). This program is great. I truly believe (and not just because of this happening, I have always believed that) that when something happens, and you feel like it the world is crashing down around you, wait. God has something planned for you that is bigger and better and that will bless you in a way that you did not even know was possible.
Last week when Gunner had his weekly PT appointment, a representative from a child's chair company came. We tried Gunner out in this chair that is really padded with soft material and it will make him stand and learn how to walk forward. Once he is comfortable with walking forward, we will add different wheels that will allow him to go backwards and side to side in it. They don't want him starting out with the other wheels at first because that would be too much stimulation for him at first and all at once. We tried him in the chair and Gunner looked like such a big boy in it! He cried when we put him in it. Not because he was hurting (which I was afraid might happen), but because I wasn't directly holding him and he was close to the chair representative so he could adjust the chair. He kept wanting to get by me ha ha.
You might be wondering if the straps will hurt his skin. I am not going to say that they cant hurt him, because they CAN. But, they are adding extra padding to his straps and lowering them a bit so that they will not be right underneath his armpits (one of his really sensitive areas). The strap will also not be needed for long (if at all) because he has really strong trunk control. They are also lowering his chair an inch or so. We got to pick what color chair and we chose a deep metallic green color. The front wheels will be clear and will light up when he moves (more motivation to want to move). We will get it in a few weeks. We are excited for Gunner to start being mobile and getting into everything!
Gunner is so smart. He has this elephant that shoots plastic balls up in the air out of it's trunk. He got it from Santa Claus for Christmas this year and he has just learned how to push the button and turn the music on and he will dance to the music. He LOVES to dance and move, ALMOST as much as he loves to go outside and go for a drive. :)
Gunner's feet have been looking pretty "angry" lately so we are back to doing bleach baths and using antibiotic ointment on them. Finally today we are noticing some healing with them. Slowly but surely. It is a little strange to us, because Gunner usually heals (even with an infection) in about 3 or 4 days and it is taking a little longer this time. He is also itching SO bad lately. He will literally rub his raw red feet together because they itch so bad. One of our EB mom friends suggested that we do the bleach bath like normal, then drain the water and do the Aveeno oatmeal bath to soothe his skin because the bleach can really be itchy on his skin. Itchiness is a side effect of EB, but bleach makes it worse. SO since we started using the oatmeal bath after the bleach, it has helped with his feet. He still itches the wounds on his sides and breaks them open repeatedly, but his feet seem to have some relief.
This blister wrapped around his entire top part of his foot around to the back. I had to lance it in several places to drain because there was so much pressure. Even then, all the fluid didn't come out in one try. It is just too sore and sensitive for Gunner. All that pressure of the fluid and the needle popping it, it just hurts him.
This is the picture after I popped all that Gunner would let me. You can see a little bubble of fluid at the bottom that I wasn't able to get. This was about a week ago, now, this place is really raw, red, and draining.
But, like always, you would never know anything hurt Gunner by looking at him. He is something else, and I am so proud to call him my son. I am so so blessed. :)
Thank you all for reading!
Last week when Gunner had his weekly PT appointment, a representative from a child's chair company came. We tried Gunner out in this chair that is really padded with soft material and it will make him stand and learn how to walk forward. Once he is comfortable with walking forward, we will add different wheels that will allow him to go backwards and side to side in it. They don't want him starting out with the other wheels at first because that would be too much stimulation for him at first and all at once. We tried him in the chair and Gunner looked like such a big boy in it! He cried when we put him in it. Not because he was hurting (which I was afraid might happen), but because I wasn't directly holding him and he was close to the chair representative so he could adjust the chair. He kept wanting to get by me ha ha.
Gunner is so smart. He has this elephant that shoots plastic balls up in the air out of it's trunk. He got it from Santa Claus for Christmas this year and he has just learned how to push the button and turn the music on and he will dance to the music. He LOVES to dance and move, ALMOST as much as he loves to go outside and go for a drive. :)
But, like always, you would never know anything hurt Gunner by looking at him. He is something else, and I am so proud to call him my son. I am so so blessed. :)
Sunday, February 3, 2013
It's late evening on a Sunday...
Cody and Gunner are both in bed. My poor husband has been so sleepy lately, and Gunner always goes to bed around this time. So, that means quiet time for mommy to catch up on the blog and eat some milk and cookies. :) Gunner is doing pretty good, both of his big toes are open and draining, but thankfully are starting to clear up. Both of his sides are open and sensitive, and he has open wounds under both armpits and a circular wound on his chest. His nose is also still giving him problems. We found out that it is from him rubbing his eyes when he is tired or cranky. Now, both sides of his nose and across the bridge of his nose are looking pretty rough, but actually are starting to heal. His mouth has been a problem this week as well. He had a HUGE blood blister that didn't let him eat normally for a day and a half. Here is what it looked like, the thing coming out of his mouth is the tip of the blister. It went all the way to the back of his mouth inside.
But, as always, he is my little warrior.
Mommy got creative about a week ago with Gunner's hair. It is getting long enough now that it stands up and wont lay down right sometimes. So, the other day, it stuck up on its own like a mowhawk. Mommy has gel and hair spray of course, so I put gel in it to make it stay. :)
We have been blessed this past week. We got approved for SSI for Gunner! This will help with the extra expenses monthly to help care for our little guy. :) We are having a small problem with insurance though right now. I am working on getting it worked out, but we could use some prayers that everything gets fixed quickly! Thank you!
Cody is doing well too. He loves his job here locally and it is great for mommy and Gunner for daddy to be home every evening and on the weekends.
The other day, we got a package from The Butterfly Fund. Not for any certain reason, it was a "just because" package. It had in it some really soft shirts and a onsie from a company called Kicky Pants. Their clothes are so EB friendly. They are REALLY soft and made from bamboo. :) Also they are pretty breathable, which is good because too much heat and pressure of tight clothing can make the blisters and skin slough off. Oh, how we love The Butterfly Fund!
We have been working with Gunner to do some sign language. He now can sign "more" and "please". He is so so smart.
It seems like at least everyday, I learn something new about EB. Whether it be little or big, everyday I learn something, and it is almost always from a fellow EB parent or an adult with EB. I learned today, that people with EB have sensory overload with their skin. A lot of times I have noticed that Gunner will whine or arch his back and act like touching a certain part of him hurts, even when their is no blister there. For example, Gunner had his back break down really bad back in July/August of last year. Now, it is healed for the most part but still has the milia (white bumps) and scar tissue where that wound once was. I will be changing his clothes and I will rub aquaphor on his back (to keep it lubricated) and he will cry like something happened or a wound is there. I will check for any new blisters or wounds, and nothing will be there. Well, one of my fellow EB moms asked this question, and got responses that EB skin gets sensory overload. :( I will now be more aware of what areas he acts like this in.
I am so very thankful to our EB family. Yes, doctors help us, but in all honesty I have gotten SO much of my knowledge of EB from my EB adults and parents! It is scary/frustrating/exhausting and makes me want to cry when you go to a doctor and they do not know what to tell you to help your child, or what they tell you to do you already know that it won't work because they do not know about your child's disease. But I find comfort in knowing that I can cry, let out my frustrations, then go to my EB family and vent and re ask the question and get a better idea of what to do. God sure has blessed us.
Finally, I want to close this post with some GREAT news!!!
Gunner's blood work is sent off to the company that is doing his subtype testing GeneDX!!! Gunner did get scared when they drew his blood. He started crying before we even got back to the lab. We go to the doctor and see specialists so much, that immediately now when he sees someone in scrubs he automatically cries. BUT, good news is, we came out with no open skin or blisters from the blood draw!! GeneDX called earlier this week to let us know everything looked good, and that the lab has started working on his blood and we should expect results mid to late March. It takes so long because since Gunner has a recessive form of EB, they do not know what specific areas of his DNA to start looking at for the altered genes. We are so thrilled! Thank you to each and every one of you that have supported Gunner and to continue to support him! We are so very thankful to each and every one of you!
Photo Courtesy: Christie Zink
But, as always, he is my little warrior.
Mommy got creative about a week ago with Gunner's hair. It is getting long enough now that it stands up and wont lay down right sometimes. So, the other day, it stuck up on its own like a mowhawk. Mommy has gel and hair spray of course, so I put gel in it to make it stay. :)
Cody is doing well too. He loves his job here locally and it is great for mommy and Gunner for daddy to be home every evening and on the weekends.
The other day, we got a package from The Butterfly Fund. Not for any certain reason, it was a "just because" package. It had in it some really soft shirts and a onsie from a company called Kicky Pants. Their clothes are so EB friendly. They are REALLY soft and made from bamboo. :) Also they are pretty breathable, which is good because too much heat and pressure of tight clothing can make the blisters and skin slough off. Oh, how we love The Butterfly Fund!
We have been working with Gunner to do some sign language. He now can sign "more" and "please". He is so so smart.
It seems like at least everyday, I learn something new about EB. Whether it be little or big, everyday I learn something, and it is almost always from a fellow EB parent or an adult with EB. I learned today, that people with EB have sensory overload with their skin. A lot of times I have noticed that Gunner will whine or arch his back and act like touching a certain part of him hurts, even when their is no blister there. For example, Gunner had his back break down really bad back in July/August of last year. Now, it is healed for the most part but still has the milia (white bumps) and scar tissue where that wound once was. I will be changing his clothes and I will rub aquaphor on his back (to keep it lubricated) and he will cry like something happened or a wound is there. I will check for any new blisters or wounds, and nothing will be there. Well, one of my fellow EB moms asked this question, and got responses that EB skin gets sensory overload. :( I will now be more aware of what areas he acts like this in.
I am so very thankful to our EB family. Yes, doctors help us, but in all honesty I have gotten SO much of my knowledge of EB from my EB adults and parents! It is scary/frustrating/exhausting and makes me want to cry when you go to a doctor and they do not know what to tell you to help your child, or what they tell you to do you already know that it won't work because they do not know about your child's disease. But I find comfort in knowing that I can cry, let out my frustrations, then go to my EB family and vent and re ask the question and get a better idea of what to do. God sure has blessed us.
Finally, I want to close this post with some GREAT news!!!
Gunner's blood work is sent off to the company that is doing his subtype testing GeneDX!!! Gunner did get scared when they drew his blood. He started crying before we even got back to the lab. We go to the doctor and see specialists so much, that immediately now when he sees someone in scrubs he automatically cries. BUT, good news is, we came out with no open skin or blisters from the blood draw!! GeneDX called earlier this week to let us know everything looked good, and that the lab has started working on his blood and we should expect results mid to late March. It takes so long because since Gunner has a recessive form of EB, they do not know what specific areas of his DNA to start looking at for the altered genes. We are so thrilled! Thank you to each and every one of you that have supported Gunner and to continue to support him! We are so very thankful to each and every one of you!
Photo Courtesy: Christie Zink
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