Yesterday, a young child lost his life due to a Mitochondrial Disease. I'm not sure about which specific one. But I know his mother, father, and sister know everything about it. This child is one out of many that have lost their lives due to a Mito/FOD disease. There are many wonderful charities out there that do research/education for childhood/adult conditions. To name a few, Susan G. Komen, Jerry's Kids, St Judes, Children's Miracle Network, etc. But how many of you have heard of Mitochondrial Diseases? Much less a place to facilitate funds as well as education on these types of diseases? There are 2 wonderful websites that I go to quite often for my own education and support with Evangeline's LCHAD (which falls under the Mito "umbrella" so to speak) The first one is a way to get facts and info as well as to be able to donate/be an advocate for these wonderful children who cannot, themselves, speak.
www.umdf.org
The second one is a way for family and friends of children with these disorders/diseases to connect. To share recipes, get support, etc. We are talking practical advice that the Drs don't tell you about. Day to day life living with a Mito/Fatty oxidation disorder.
www.FODsupport.org
These past few weeks I have had it on my heart to start being an advocate for not only my child but for others suffering from these disorders/diseases. We have been blessed beyond belief by being able to get a Nurse in the home for 30 hrs a week. So I now have more time and more energy to focus on finding me. While I do want to get a job, I also want to try and bring people information, clear, information about Mito diseases. The more people that are aware of the severity and the dangers that these particular conditions, the more likely we are to get a cure.
Perhaps if we came together, as a community of 1, we could work together to try and find a cure for not only my sweet Evie Grace, but for all children (and adults as well) living with these diseases.
What is my place in all of this? Starting next week, I am going to try and see if we can't raise awareness here in Shreveport. Denton, Tx had a 5k coming up that was for Mito. Perhaps we can find a way to have a 5k here? I am not sure. Many ideas are in the works, and God is helping me to figure all this out.
So, you may ask, "how can I help?" Firstly, you can pray. Pray for these kids, and their families that are dealing with this day to day. Secondly, if we can get a 5k here in town, get out your best sneakers and start preparing! Thirdly, know that while cancer, muscular dystrophy, cystic fibrosis, etc, are all known about, Mito diseases, while not as rare as you might think, are generally not. So begin talking about it!
There is also another need here in Shreveport. We have so many kids in the hospitals that need our support. Physically, mentally, spiritually. Not all kids are born with parents that are supportive. Some kids are simply left in the hospital for days on end. Other times the parent has other responsibilities and simply cannot stay with the child. Then, there is the need for the kids in the hospitals to feel safe and more at home. Again, you ask, "how can I help?" There are several ways. You can volunteer at Sutton Childrens, here in Shreveport and just do whatever is needed. You can also donate gently used toys or even brand new ones for kids of all ages. Then lastly, you can always pray. Pray for these kids as they are in an unfamiliar, often scary place, sometimes alone.
Thanks for listening and being a part of this chapter in our lives. Hopefully, we, together, can help minister to children and adults in this very practical and much needed way. Thanks again.
Friday, September 24, 2010
Thursday, September 23, 2010
Where do I begin?
Hey guys. We just got back from New Orleans from a weeks stay at Children's Hospital. For anyone that may not know LA, this is a 6 hr drive from Shreveport. So it was quite an ordeal. We went in on August 27th to a hospital here in Shreveport, where Evangeline had her G-Tube placed. WE were discharged 5 days later,where she was taking bottles so well, seemingly tolerating her G-tube. The next day, she spiked a temp, her BS was 206, and she was very lethargic. This is odd for an LCHAD child. Usually low BS is an indicator that something is wrong. So I ended up taking her back to the hospital. It was there, that she decided she no longer wanted to eat. At all. She began screaming every time we turned her pump on, and it was even worse bottle feeding. She was then on only D10, because her body could not handle formula. She began retching (she had a nissen done as well.) They transferred us to Children's after a week there.
Children's was somewhat better. She began tolerating some tube feeds, and we are still working on getting her to bottle feed. We have had her evaluated by GI specialists, who suggest to turn her G-Tube into a GJ tube, which I am certainly NOT a fan of. Meaning, they would internally, move her tube from her stomach to directly into her intestines, bypassing the stomach. Meaning she would eat only by tube. They would also give her meds to help with the pain of eating. They, however, can't do this until the G-tube tract has fully formed. Thank God, I don't have to make that decision just yet.
We also had her evaluated by OT and by speech therapy was well, and neither one noticed anything with her sucking/swallowing nor her gross/fine motor skills. Just having some difficulty with tummy time, because of the G-tube still being somewhat sore.
She was also diagnosed with Anemia, so it could be an issue of not having the energy to suck. We have her on Iron Supplements, for the time being, until we get the results of those tests back. We can then know if it is due to lack of nutrition, or other reasons.
Things are looking, up, however. She drank a little less than an ounce today and got 1/2 of her rice cereal from the spoon. She just loves that spoon. Anything can go in her mouth except that stinking bottle. We also received our Extended Care nurse. Things are working really well, so far. It is so wonderful to have someone who understands how to handle her and has experience dealing with special needs kids. Currently, we use her 9a-3p M-F. WE can also change hours up, if we have a special occasion or want to go on a date. It is kind of like having a Nurse for a Nanny. I am having difficulty letting her take over, but I realize that Evie needs to know other people than just her Daddy and Me. She will hopefully get used to Mrs A. pretty quickly. I would love to go back to school to work on getting either Alt. Cert to teach music in public school, or simply finish my Ed degree, only 22 hrs left. Either way, it means me finding me again and having peace in our marriage.
Children's was somewhat better. She began tolerating some tube feeds, and we are still working on getting her to bottle feed. We have had her evaluated by GI specialists, who suggest to turn her G-Tube into a GJ tube, which I am certainly NOT a fan of. Meaning, they would internally, move her tube from her stomach to directly into her intestines, bypassing the stomach. Meaning she would eat only by tube. They would also give her meds to help with the pain of eating. They, however, can't do this until the G-tube tract has fully formed. Thank God, I don't have to make that decision just yet.
We also had her evaluated by OT and by speech therapy was well, and neither one noticed anything with her sucking/swallowing nor her gross/fine motor skills. Just having some difficulty with tummy time, because of the G-tube still being somewhat sore.
She was also diagnosed with Anemia, so it could be an issue of not having the energy to suck. We have her on Iron Supplements, for the time being, until we get the results of those tests back. We can then know if it is due to lack of nutrition, or other reasons.
Things are looking, up, however. She drank a little less than an ounce today and got 1/2 of her rice cereal from the spoon. She just loves that spoon. Anything can go in her mouth except that stinking bottle. We also received our Extended Care nurse. Things are working really well, so far. It is so wonderful to have someone who understands how to handle her and has experience dealing with special needs kids. Currently, we use her 9a-3p M-F. WE can also change hours up, if we have a special occasion or want to go on a date. It is kind of like having a Nurse for a Nanny. I am having difficulty letting her take over, but I realize that Evie needs to know other people than just her Daddy and Me. She will hopefully get used to Mrs A. pretty quickly. I would love to go back to school to work on getting either Alt. Cert to teach music in public school, or simply finish my Ed degree, only 22 hrs left. Either way, it means me finding me again and having peace in our marriage.
Friday, August 20, 2010
"Normal"
I'm not sure what everyone knows as of late, so I will try to give a *brief* update of Evangeline's health and issues surrounding this area of her life. Evangeline is having surgery next Friday, a week from today, to get a G-tube placed. This will help her to eat better, and also help her to sleep better at night. It will also help her stomach to stretch, enabling her to take more formula. At the same time they are also doing a Nissen: this is a procedure in which they are tying part of her stomach around the top of her esophagus, to prevent her from vomiting/burping. Enabling her to keep all formula down. She will, however, still have the need to dry heave/retch. Meaning we will have to do what is called "manual burping" where we use a syringe at the g-tube site to burp her and let the gas out. IF she is retching,we can try to get her mind off of it by running her hands under water or other things like that.
We are going into the hospital on Thursday morning, the day before, to have some tests run to see how big her stomach is, and since she needs to fast for that test, we are staying in the hospital and she will be on IV fluids. The Drs suspect she will be in for at least 4-5 days.
After returning home, she will continue to try to nipple first, then, if after 25-30 she doesn't finish her bottle, we will use the G-tube to feed her. We don't want her using all of her energy trying to suck on a bottle that she won't eat. Especially since she has LCHAD, and she needs all the energy from her food that she can get to keep her sugars high.
We are still in the process of getting an extended care nurse. Through all of this, I am a stay at home mom, who really does miss working, however, I do love spending time with Evie. Right now, we could really use help at night, but we have the NG Tube, which is sooo very dangerous. (You can look at previous posts). I learned that we can get an extended care nurse and once we get her in the home, we can choose whatever hours we want, so if I wanted to go back to work, after the G-tube is placed, to feel more like a human, instead of a Zombie-Nurse-Mother-Wife (in that order) we could use her skills to watch Evangeline and to keep her safe and healthy, without worries that she will get sick, like she would at a daycare. Of course, this could just be another pipe dream, and I may be stuck at home until she goes to school. But until then, there is always hope.
I hope you are well informed of all that is going on. All of my energy is going into trying not to worry about this "procedure" that everyone seems to think is a great thing. They think it should be easy for me to watch my baby go in the hospital like that. This will be her 3rd hospital stay in 6 mo. This has been anything but easy. However, as painful as it is for me to watch her go through this, and as little sleep as I am getting now, (and I would continue to do so, if it were in her best interest) I know that this surgery will help her in the long run. And that, is the ONLY reason I have chosen to do this to her. Not for my sleep, not for my sanity, but for her well being. I love her too much to let anything bad happen. And that is why I am dreading this surgery. I know the NG tube. I have done it in my sleep. I've learned it in and out, backwards and forwards, but this G-Tube will be brand new. I can handle that. But watching my little girl have something sticking out of her belly, for an indefinite amount of time, and seeing her with and IV in her arm for 4-5 days, laid in a hospital bed is simply too hard. And then knowing that she will have that Tube sticking out of her belly when we do finally eave, it is just heartbreaking. But, like everything else we have been through, I will adjust. We will adjust. And she, just like everything else that she will have to do, will think that it is "normal".
We are going into the hospital on Thursday morning, the day before, to have some tests run to see how big her stomach is, and since she needs to fast for that test, we are staying in the hospital and she will be on IV fluids. The Drs suspect she will be in for at least 4-5 days.
After returning home, she will continue to try to nipple first, then, if after 25-30 she doesn't finish her bottle, we will use the G-tube to feed her. We don't want her using all of her energy trying to suck on a bottle that she won't eat. Especially since she has LCHAD, and she needs all the energy from her food that she can get to keep her sugars high.
We are still in the process of getting an extended care nurse. Through all of this, I am a stay at home mom, who really does miss working, however, I do love spending time with Evie. Right now, we could really use help at night, but we have the NG Tube, which is sooo very dangerous. (You can look at previous posts). I learned that we can get an extended care nurse and once we get her in the home, we can choose whatever hours we want, so if I wanted to go back to work, after the G-tube is placed, to feel more like a human, instead of a Zombie-Nurse-Mother-Wife (in that order) we could use her skills to watch Evangeline and to keep her safe and healthy, without worries that she will get sick, like she would at a daycare. Of course, this could just be another pipe dream, and I may be stuck at home until she goes to school. But until then, there is always hope.
I hope you are well informed of all that is going on. All of my energy is going into trying not to worry about this "procedure" that everyone seems to think is a great thing. They think it should be easy for me to watch my baby go in the hospital like that. This will be her 3rd hospital stay in 6 mo. This has been anything but easy. However, as painful as it is for me to watch her go through this, and as little sleep as I am getting now, (and I would continue to do so, if it were in her best interest) I know that this surgery will help her in the long run. And that, is the ONLY reason I have chosen to do this to her. Not for my sleep, not for my sanity, but for her well being. I love her too much to let anything bad happen. And that is why I am dreading this surgery. I know the NG tube. I have done it in my sleep. I've learned it in and out, backwards and forwards, but this G-Tube will be brand new. I can handle that. But watching my little girl have something sticking out of her belly, for an indefinite amount of time, and seeing her with and IV in her arm for 4-5 days, laid in a hospital bed is simply too hard. And then knowing that she will have that Tube sticking out of her belly when we do finally eave, it is just heartbreaking. But, like everything else we have been through, I will adjust. We will adjust. And she, just like everything else that she will have to do, will think that it is "normal".
Wednesday, August 11, 2010
Operation
Ahh this one sounds like it should be fun. You know, the old game called "Operation" where the guy has all these different body parts that you have to insert back in his body and you have the tweezers attached to a wire? If you touch the metal side, the guy's nose lights up and makes a really loud beeping or I guess I should say honking sound telling you that you screwed up? Don't you wish that real life operations worked that way? That the patient's nose lit up every time you almost screwed something up?
In my last blog I wrote about how I received a phone call from Lady L talking about Baby Girl's Dr asking questions about a G-Tube. Well, I sucked it up and made an appt today. I was nervous because I didn't know how it was gonna go and I certainly had a right to be! Little did I know that when I did this he would want to do surgery right away. Meaning, my appt with the surgeon is in the morning and we are doing surgery, presumably next week, to get a G tube placed.
It was in the back of my mind, but I guess that I never really thought she would need it. I thought she would get better by now. That her reflux would get better, that she would start liking food more, that she would be more than in the 10th percentile in weight and height.But it hasn't. She has stayed the same. The only thing that has changed is the fact that we have been able to move from a 1 hr feeding schedule to a 2.5 hr feeding schedule, which, yes, is a heck of a lot better. But we are at a standstill. At the beginning of the NG tube placement, we said by August, if nothing had changed, we would consider something different, and the Dr came up with this solution. She has been on the NG tube now for 3 mo. It is so dangerous and is not a permanent solution. Not that the G tube is a great solution either, but it is a bit more safe for at home care.
All that being said our best outcome is us having this for less than 2 years. Our worst outcome is 10 years or more. No one will give us an estimate. I am hoping for the 2 year range. I pray that Baby Girl will enjoy foods and begin to eat more and more! But that was our prayer with the NG tube as well.
Now about the surgery:
With an ordinary child, this could probably be done as an outpatient procedure. However, an LCHAD child cannot go without fasting, therefore Evangeline will need to be admitted the day before so that she can be hooked up to IV fluids so that her sugars remain stable. Ordinarily they would ask that she not eat from say midnight till she gets out of recovery. For Evie, this is impossible. They will also need to be in close contact with Dr Marble, he specialist, during the surgery, should anything happen, like her sugars dropping for no reason, as commonly does with LCHAD patients. She will also probably have to stay the night that night to ensure that she tolerates the Gtube and the formula pretty well so that we don't end up right back in the hospital. And if she doesn't tolerate it, then we stay another night until she does. This is what is scary to me. All these "what ifs".
It is so hard for me to pray for "God's Will" because God's Will is not "Brittany's Will". My will would be for her to be perfect. Digest fats, no tubes, take all of her bottles, and be in the 90th percentile. But instead, she is in the 10th percentile, can't digest Long chain fats, needs a tube to help her eat, and is not "normal". I realize that the NG tube is dangerous for her and is certainly not helping my marriage or myself but this just seems so unreal. So permanent. The G tube will be better for all, if the surgery goes well.
I don't really know what more I can say. It is out of my hands.It really does feel like I am living someone Else's life. It is a very odd feeling.
In my last blog I wrote about how I received a phone call from Lady L talking about Baby Girl's Dr asking questions about a G-Tube. Well, I sucked it up and made an appt today. I was nervous because I didn't know how it was gonna go and I certainly had a right to be! Little did I know that when I did this he would want to do surgery right away. Meaning, my appt with the surgeon is in the morning and we are doing surgery, presumably next week, to get a G tube placed.
It was in the back of my mind, but I guess that I never really thought she would need it. I thought she would get better by now. That her reflux would get better, that she would start liking food more, that she would be more than in the 10th percentile in weight and height.But it hasn't. She has stayed the same. The only thing that has changed is the fact that we have been able to move from a 1 hr feeding schedule to a 2.5 hr feeding schedule, which, yes, is a heck of a lot better. But we are at a standstill. At the beginning of the NG tube placement, we said by August, if nothing had changed, we would consider something different, and the Dr came up with this solution. She has been on the NG tube now for 3 mo. It is so dangerous and is not a permanent solution. Not that the G tube is a great solution either, but it is a bit more safe for at home care.
All that being said our best outcome is us having this for less than 2 years. Our worst outcome is 10 years or more. No one will give us an estimate. I am hoping for the 2 year range. I pray that Baby Girl will enjoy foods and begin to eat more and more! But that was our prayer with the NG tube as well.
Now about the surgery:
With an ordinary child, this could probably be done as an outpatient procedure. However, an LCHAD child cannot go without fasting, therefore Evangeline will need to be admitted the day before so that she can be hooked up to IV fluids so that her sugars remain stable. Ordinarily they would ask that she not eat from say midnight till she gets out of recovery. For Evie, this is impossible. They will also need to be in close contact with Dr Marble, he specialist, during the surgery, should anything happen, like her sugars dropping for no reason, as commonly does with LCHAD patients. She will also probably have to stay the night that night to ensure that she tolerates the Gtube and the formula pretty well so that we don't end up right back in the hospital. And if she doesn't tolerate it, then we stay another night until she does. This is what is scary to me. All these "what ifs".
It is so hard for me to pray for "God's Will" because God's Will is not "Brittany's Will". My will would be for her to be perfect. Digest fats, no tubes, take all of her bottles, and be in the 90th percentile. But instead, she is in the 10th percentile, can't digest Long chain fats, needs a tube to help her eat, and is not "normal". I realize that the NG tube is dangerous for her and is certainly not helping my marriage or myself but this just seems so unreal. So permanent. The G tube will be better for all, if the surgery goes well.
I don't really know what more I can say. It is out of my hands.It really does feel like I am living someone Else's life. It is a very odd feeling.
Thursday, August 5, 2010
Pros and Cons
Let me simply state that Baby Girl is doing well. Very well, in fact. Developmentally, that is. She is, actually, according to Early Steps, an early childhood development program, meeting all of the 5-6 month milestones. We have met with these people several times and they have evaluated, looked, observed, and scrutinized her. She has played, and I have answered question after question, as honestly as possible. This particular program does not adjust or correct her age. Meaning that since she was born nearly 2 months early they take none of this into consideration. This is amazing, that she is doing everything a normal 5-6 mo old baby would be doing. She is just tiny. And I mean tee-tiny.
I have a almost 6 mo. old, 12 lb, 3.5 oz baby.I couldn't love her more. The only problem is her eating habits. I struggle daily with getting her to take what her dietitian says she needs to keep growing. She is staying right along the 10th percentile curve, which is great.
I received a phone call from....lets call her Lady L. Lady L is an office case manager for Baby Girl's Dr's Office. She has a daughter with a peg tube. She called to get some info on Baby Girl, which is normal, I get these calls all the time. And she and I have spoken before. Well, She also mentioned, at the end of our conversation that The Dr had come in a few days ago asking her about her daughter with the Peg tube. He also mentioned that he had a patient who he was thinking about recommending to get one. Lady L asked, "Is it Evangeline"? To which the Dr replied "Yes". She stated that he had mentioned this to her, because winter was coming up and there would probably be more issues with Baby Girl getting sick because it does go through the nasal passages that and we have had SO many issues with it.
I have no problem with Lady L or the Ped's conversation. What I do have an issue with is the Dr not calling me about this. He has obviously been thinking about it, and to hear it from someone other than him, is very disrespectful, in my opinion. On that note, however, when all of this tube business started, Patrick and I did say that if things were not better by August then we could start discussing other options. At least I know I tried my best, to try everything before jumping directly to the G-Tube.
Here are a few of the differences for those that may not know:
NG Tube:
Goes through the Nose
Is seen by everyone
has to be replaced weekly
Tape has to be replaced bi-weekly
Can be pulled out by Child
Not permanent-meaning if the situation gets better, then we simply don't insert it.
Requires Home health visits weekly
Has a pump that can be used for nightly feeds but is dangerous due to the fact that the child can inadvertently pull it out, meaning Child can aspirate.
G-Tube (AKA-Peg Tube)
Goes through the stomach
requires surgery for insertion and removal
Not visible
Must be kept clean
More Permanent than NG Tube meaning that if the situation gets better, the tube will more than likely stay, just to make sure that the situation stays stable and Baby Girl can eat everything she needs to by mouth, even when sick.
Has a pump that can be used for nightly feeds
Can also do another surgery at the same time to help ensure that Baby Girl keeps food down. This Makes her not throw up as easily.
Causes a scar
She will more than likely have this till she is at least 5 or 6.
This is not a decision we bear lightly. We have spoken about this at length. There are many, many benefits to getting the Peg tube, however, only time will tell if her stomach will get bigger to where she can handle larger volumes of formula. We were hoping that she would be better by now, to where we could extend her feeding time to 2.5 hrs, and then to 3, and then to 3.5, then to 4, etc. At the beginning of the summer she was able to eat every hr. We got to 2 hrs a few weeks later and are at a standstill there. It is exhausting to constantly worry about how much liquid your child is ingesting. Then, too, we had her on a feeding pump, but because of several issues with it, I no longer trust the saftey of Evangeline, so we are now bolus feeding her (feeding through the tube) every 2.5 hrs through the night. Meaning, we aren't sleeping again.
I would love to get an in home night nurse. However, we are waiting for paperwork to go through. These things take forever. Please pray with us, as we weigh these heavy decisions that will affect Evangeline for many years. Thanks.
I have a almost 6 mo. old, 12 lb, 3.5 oz baby.I couldn't love her more. The only problem is her eating habits. I struggle daily with getting her to take what her dietitian says she needs to keep growing. She is staying right along the 10th percentile curve, which is great.
I received a phone call from....lets call her Lady L. Lady L is an office case manager for Baby Girl's Dr's Office. She has a daughter with a peg tube. She called to get some info on Baby Girl, which is normal, I get these calls all the time. And she and I have spoken before. Well, She also mentioned, at the end of our conversation that The Dr had come in a few days ago asking her about her daughter with the Peg tube. He also mentioned that he had a patient who he was thinking about recommending to get one. Lady L asked, "Is it Evangeline"? To which the Dr replied "Yes". She stated that he had mentioned this to her, because winter was coming up and there would probably be more issues with Baby Girl getting sick because it does go through the nasal passages that and we have had SO many issues with it.
I have no problem with Lady L or the Ped's conversation. What I do have an issue with is the Dr not calling me about this. He has obviously been thinking about it, and to hear it from someone other than him, is very disrespectful, in my opinion. On that note, however, when all of this tube business started, Patrick and I did say that if things were not better by August then we could start discussing other options. At least I know I tried my best, to try everything before jumping directly to the G-Tube.
Here are a few of the differences for those that may not know:
NG Tube:
Goes through the Nose
Is seen by everyone
has to be replaced weekly
Tape has to be replaced bi-weekly
Can be pulled out by Child
Not permanent-meaning if the situation gets better, then we simply don't insert it.
Requires Home health visits weekly
Has a pump that can be used for nightly feeds but is dangerous due to the fact that the child can inadvertently pull it out, meaning Child can aspirate.
G-Tube (AKA-Peg Tube)
Goes through the stomach
requires surgery for insertion and removal
Not visible
Must be kept clean
More Permanent than NG Tube meaning that if the situation gets better, the tube will more than likely stay, just to make sure that the situation stays stable and Baby Girl can eat everything she needs to by mouth, even when sick.
Has a pump that can be used for nightly feeds
Can also do another surgery at the same time to help ensure that Baby Girl keeps food down. This Makes her not throw up as easily.
Causes a scar
She will more than likely have this till she is at least 5 or 6.
This is not a decision we bear lightly. We have spoken about this at length. There are many, many benefits to getting the Peg tube, however, only time will tell if her stomach will get bigger to where she can handle larger volumes of formula. We were hoping that she would be better by now, to where we could extend her feeding time to 2.5 hrs, and then to 3, and then to 3.5, then to 4, etc. At the beginning of the summer she was able to eat every hr. We got to 2 hrs a few weeks later and are at a standstill there. It is exhausting to constantly worry about how much liquid your child is ingesting. Then, too, we had her on a feeding pump, but because of several issues with it, I no longer trust the saftey of Evangeline, so we are now bolus feeding her (feeding through the tube) every 2.5 hrs through the night. Meaning, we aren't sleeping again.
I would love to get an in home night nurse. However, we are waiting for paperwork to go through. These things take forever. Please pray with us, as we weigh these heavy decisions that will affect Evangeline for many years. Thanks.
Sunday, August 1, 2010
The Devil Works in the Night
It always happens at night. Those feelings of inadequacy, jealousy for wanting something I know I can't have, feeling that the 2 most important people in my life deserve better.
I try during the day to accomplish goals to make myself feel better about day to day life. For instance, yesterday, I wanted to finish up Evie's room, do dishes, etc. So when something happens and get in the way of letting me accomplishing my goals for the day it really bothers me. Not only not accomplishing the simple things like laundry and changing the sheets, but also not accomplishing mental goals as well. For instance, trying to accept that other families will have normal lives, unlike me and Patrick and Evie. It is a daily battle. What is the "norm" for us, is completely different from other people's norms.
We went to Dallas a few weeks ago to meet with some pretty awesome people. We stopped about halfway there to reinsert Baby Girls NG tube, on the side of the road, on a picnic table. (Good thing its not a sterile process!!!) We drove up to the hotel, after having had a 3 hr trip turn into a 5 hr trip. Proceeded to get all of our things out of the car, looked around and realized that no one else had an IV pole attached to their stroller so that their kid could eat. Little things like that.
The rest of the trip went relatively smoothly. We met at a little shop in Denton, and had beautiful Fat Free Yogurt, although I added a smidgen of granola to mine. IT was wonderful. I guess the most important thing that I got out of this trip was a wonderful friendship with another family that, hey, is just like mine!
These people, have a wonderful, funny, bright 18 year old daughter who has LCAHD. IT is so nice to see that she is normal, and can hang out with her friends. I guess I had it in my mind, that Evie would have a very select group of friends that knew and understood about her disorder, and would accommodate for that, and that still may be true,but she can go to school, she doesn't have to let the entire world know that she is Fat intolerant, so to speak. Fat content is a very big topic in our household, and I do get concerned about what how future friends and their families will handle Evie. I heard of one family who had really good friends who had a shelf in their house dedicated to their child. Its just nice to know that even if this family is 3 (er....5?) hrs out of the way, they are nearby and we can get together regularly. We ARE all in this together.
Literally, it pains me sometimes to look at healthy babies that are Evie's age. For whatever reason, I have no problem with older children, just the younger ones that are healthy. I think all sorts of horrible thoughts and I can only beg God to forgive me. Its not, necessarily, that I want something to happen to those kids. Its just that I want Evie to be healthy and "normal". I want Evangeline. I just want her to have all the enzymes necessary to process fats so that she can lead a normal life. The Dr told me Monday to keep her away from other kids , so I guess that solves that problem. The germs are too sneaky and can find their way to make baby girl sick. On the one hand thats great because I don't have to put myself in a situation, where I get upset and come home and cry, and Evie doesn't get sick. On the other hand, I need adult interaction, especially now that we are back to staying up at night. Patrick will be leaving to go back to work next week and also begin taking more classes soon, and I know these feelings will all get worse.
IT always happens at night. I am laying in bed trying to go to sleep, and I can't for many reasons. Fear, worry, just can't relax, then all of the sudden these feelings of inadequacy and jealousy creep in, as if i am simply waiting for them.
I try during the day to accomplish goals to make myself feel better about day to day life. For instance, yesterday, I wanted to finish up Evie's room, do dishes, etc. So when something happens and get in the way of letting me accomplishing my goals for the day it really bothers me. Not only not accomplishing the simple things like laundry and changing the sheets, but also not accomplishing mental goals as well. For instance, trying to accept that other families will have normal lives, unlike me and Patrick and Evie. It is a daily battle. What is the "norm" for us, is completely different from other people's norms.
We went to Dallas a few weeks ago to meet with some pretty awesome people. We stopped about halfway there to reinsert Baby Girls NG tube, on the side of the road, on a picnic table. (Good thing its not a sterile process!!!) We drove up to the hotel, after having had a 3 hr trip turn into a 5 hr trip. Proceeded to get all of our things out of the car, looked around and realized that no one else had an IV pole attached to their stroller so that their kid could eat. Little things like that.
The rest of the trip went relatively smoothly. We met at a little shop in Denton, and had beautiful Fat Free Yogurt, although I added a smidgen of granola to mine. IT was wonderful. I guess the most important thing that I got out of this trip was a wonderful friendship with another family that, hey, is just like mine!
These people, have a wonderful, funny, bright 18 year old daughter who has LCAHD. IT is so nice to see that she is normal, and can hang out with her friends. I guess I had it in my mind, that Evie would have a very select group of friends that knew and understood about her disorder, and would accommodate for that, and that still may be true,but she can go to school, she doesn't have to let the entire world know that she is Fat intolerant, so to speak. Fat content is a very big topic in our household, and I do get concerned about what how future friends and their families will handle Evie. I heard of one family who had really good friends who had a shelf in their house dedicated to their child. Its just nice to know that even if this family is 3 (er....5?) hrs out of the way, they are nearby and we can get together regularly. We ARE all in this together.
Literally, it pains me sometimes to look at healthy babies that are Evie's age. For whatever reason, I have no problem with older children, just the younger ones that are healthy. I think all sorts of horrible thoughts and I can only beg God to forgive me. Its not, necessarily, that I want something to happen to those kids. Its just that I want Evie to be healthy and "normal". I want Evangeline. I just want her to have all the enzymes necessary to process fats so that she can lead a normal life. The Dr told me Monday to keep her away from other kids , so I guess that solves that problem. The germs are too sneaky and can find their way to make baby girl sick. On the one hand thats great because I don't have to put myself in a situation, where I get upset and come home and cry, and Evie doesn't get sick. On the other hand, I need adult interaction, especially now that we are back to staying up at night. Patrick will be leaving to go back to work next week and also begin taking more classes soon, and I know these feelings will all get worse.
IT always happens at night. I am laying in bed trying to go to sleep, and I can't for many reasons. Fear, worry, just can't relax, then all of the sudden these feelings of inadequacy and jealousy creep in, as if i am simply waiting for them.
Thursday, July 29, 2010
Yes, It Could Have Been Worse, But Still....
This will be short and sweet as I have a toddler wanna-be in my arms.
Tonight began like any other night. We got home, I gave Baby Girl a bath, a bottle, which she struggled with, and then put her on the pump. She was kinda fussy. With Evie, she fusses for about 5 min, then usually goes straight to sleep. This time was no exception. Except that 15 min later I hear rustling, so I give it a minute and hear more fussing. So I go in and check on her, and she had pulled her tube out. She had been asleep i know, and then in her sleep, I guess, pulled it out. I figure the bath removed some of the adhesive on the tape and when sucking on her fingers/paci somehow she missed her mouth and grabbed it out. This poses 2 very different problems:
#1. Praise God she is still with us. I am so thankful she pulled it all the way out and not just part of the way because she would have died. No doubts. Because I wouldn't have heard her, and it would have slowly drowned her.
#2. Now she is awake, and playing, praise God, and I have to reinsert that blasted tube when I really dont want to, on account of her safety.
What do I do? Leave it out and not get sleep anymore, like before, or trust that she will be "ok"?
Tonight began like any other night. We got home, I gave Baby Girl a bath, a bottle, which she struggled with, and then put her on the pump. She was kinda fussy. With Evie, she fusses for about 5 min, then usually goes straight to sleep. This time was no exception. Except that 15 min later I hear rustling, so I give it a minute and hear more fussing. So I go in and check on her, and she had pulled her tube out. She had been asleep i know, and then in her sleep, I guess, pulled it out. I figure the bath removed some of the adhesive on the tape and when sucking on her fingers/paci somehow she missed her mouth and grabbed it out. This poses 2 very different problems:
#1. Praise God she is still with us. I am so thankful she pulled it all the way out and not just part of the way because she would have died. No doubts. Because I wouldn't have heard her, and it would have slowly drowned her.
#2. Now she is awake, and playing, praise God, and I have to reinsert that blasted tube when I really dont want to, on account of her safety.
What do I do? Leave it out and not get sleep anymore, like before, or trust that she will be "ok"?
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