Thursday, July 31, 2014
July 31st 2014: Who Would Think?
Who would think my sick child who carries a backpack around for twenty hours a day would ride a bike, finish her first year of school, have a ton of friends, and just be a normal four year old? Who would think that she knows her limitations, and protects herself better than most adults? Who would think that she would make it this far? Crying more over knee cuts, and scrapes rather than boo boos at the hospital. Who would think that she could read books, color in the lines, and create a story in her imaginative world? I would have never thought so four years ago...
I never have much to write, I just want to enjoy the moments. Reflect on how much a year can change everything... I want us to live, since we work so hard at staying alive. <3
Tuesday, June 18, 2013
June 18th, 2013: It's Been A Long Time.
I can't even tell you the last time I wrote a blog about Janessa. It was before she was walking, before she was really talking, before she was actually a child! She is doing so well though. Tonight though I want to write a blog just to express my feelings on what it is like being a mom of a child who has medical needs.
A lot of times I get frustrated, stressed, and angry at life. Normally I do alright at accepting that Janessa isn't physically normal, but at other times I question it for hours. The biggest thing that I have trouble with is trying to look through the eyes of other parents and why they do the things they do. When a parent will sit there and complain their child is sick, or has a tummy ache, anything along those lines it just makes me upset. It makes me upset because why are they complaining about something mild? I mean yeah their child may have a tummy ache from eating some bad food so why cry about it, it could be worse right? Your child could have a tummy ache because their stomach bile is eating away at their stomach all the time... I mean it even gets to the point when people are complaining about more serious things such as surgeries, or cancer... I know that makes me sound absolutely like a horrible person, but hear me out here, at least cancer is curable right? My child's condition will NEVER be cured. There is no guarantee in life, no medicine, no therapy. It's horrible I feel this way, and I realized I am so consumed with my child's life that I don't think about anyone else. No one else understands because no one else has a child like this, so why would they, and who am I to judge them? Maybe I need to look toward the brighter side of things, she isn't dying, or she doesn't have a profound intellectual disability. Maybe I should just look at the good things...... She is so intelligent, and is doing so well despite this all! I shouldn't worry about other people. I should try and empathize with them on their level. I should try and put myself in their shoes because if Janessa was born without any complication I would probably be doing the same thing. There is a lot to learn in life when you are giving these circumstances. It's almost like starting over, you have to learn about the world, and understand everyone in it.
I'm going to try to keep this updated more often with our summer vacation pictures! :) positive vibes.
A lot of times I get frustrated, stressed, and angry at life. Normally I do alright at accepting that Janessa isn't physically normal, but at other times I question it for hours. The biggest thing that I have trouble with is trying to look through the eyes of other parents and why they do the things they do. When a parent will sit there and complain their child is sick, or has a tummy ache, anything along those lines it just makes me upset. It makes me upset because why are they complaining about something mild? I mean yeah their child may have a tummy ache from eating some bad food so why cry about it, it could be worse right? Your child could have a tummy ache because their stomach bile is eating away at their stomach all the time... I mean it even gets to the point when people are complaining about more serious things such as surgeries, or cancer... I know that makes me sound absolutely like a horrible person, but hear me out here, at least cancer is curable right? My child's condition will NEVER be cured. There is no guarantee in life, no medicine, no therapy. It's horrible I feel this way, and I realized I am so consumed with my child's life that I don't think about anyone else. No one else understands because no one else has a child like this, so why would they, and who am I to judge them? Maybe I need to look toward the brighter side of things, she isn't dying, or she doesn't have a profound intellectual disability. Maybe I should just look at the good things...... She is so intelligent, and is doing so well despite this all! I shouldn't worry about other people. I should try and empathize with them on their level. I should try and put myself in their shoes because if Janessa was born without any complication I would probably be doing the same thing. There is a lot to learn in life when you are giving these circumstances. It's almost like starting over, you have to learn about the world, and understand everyone in it.
I'm going to try to keep this updated more often with our summer vacation pictures! :) positive vibes.
Saturday, August 11, 2012
August 11th 2012: Motility Study
So, not much recently has happened, except for our long drawn out waited motility study that occurred last week in Columbus Ohio that determined Janessa's actual motility in her stomach and bowels! We left for Columbus on Tuesday, it was about a 4 hour drive, of course we got lost so it was a bit longer, but we made it there in one piece! The study occurred at Nationwide Children's hospital, and I must say it is such a clean hospital, and organized hospital!! Everybody was so impressed with how well behaved Janessa was, she was such a doll for the whole procedure.
Basically her procedure lasted about seven hours, and they put a series of sensory tubes into her tummy and they picked up any series of bowel movements over that time period, during the time period also we gave her IV medications that could potentially help increase her motility, and hopefully we would be able to get feeds into her tummy.
Well unfortunately, Janessa has minimal bowel movement... I wasn't really expecting much, I knew with her diagnosis she wouldn't have much, but I was hoping that there would be a bit of a chance somewhere out there... So now those result will be sent to our gastro and transplant team, and we will see what our plans will continue to be or how they will change, I will update this on Thursday with that information.
Otherwise other than that, Janessa has been well, she has been counting like crazy, knows all her colors, shapes, and her ABCs. She hasn't fully learned to walk yet, she walks with a push walker, but she can climb up playground equipment, and stairs, so hopefully it's only a matter of time!!
Basically her procedure lasted about seven hours, and they put a series of sensory tubes into her tummy and they picked up any series of bowel movements over that time period, during the time period also we gave her IV medications that could potentially help increase her motility, and hopefully we would be able to get feeds into her tummy.
Well unfortunately, Janessa has minimal bowel movement... I wasn't really expecting much, I knew with her diagnosis she wouldn't have much, but I was hoping that there would be a bit of a chance somewhere out there... So now those result will be sent to our gastro and transplant team, and we will see what our plans will continue to be or how they will change, I will update this on Thursday with that information.
Otherwise other than that, Janessa has been well, she has been counting like crazy, knows all her colors, shapes, and her ABCs. She hasn't fully learned to walk yet, she walks with a push walker, but she can climb up playground equipment, and stairs, so hopefully it's only a matter of time!!
Thursday, April 19, 2012
April 19th 2012: Falling
We haven't been inpatient for quite some time, but our good luck streak seems to have run out. We came into Children's the 17th, Janessa had a fever at it's highest of 101.3, and had a pretty bad cough with it. Of course with a fever we can't be sure if it's a line infection or anything else with our central line kids. After our 6 hour ER stay with various culture draws from her central line, peripheral line, urine, stool, and a viral panel, we were placed on floor 8 until a room opened up on our normal 7B transplant floor.
So far we have had many issues with her GJ so clogged that we can't drain it, she has been throwing up so much that finally someone is calling the IR team to change it, hopefully they will do it either today or tomorrow. Janessa's viral panel came back positive for a virus, she has a pretty nasty cold going on, and she is just so exhausted and weak, but keeps fighting it. Her central line came back positive for staph on the 17th but was negative for the 18th so we think her line is a contaminate, if it's negative for the 19th, then her line is clear of infection. Her peripheral is clear, her stool is clear, and her urine is always positive as usual.
The doctors are upping her TPN to 20 hours because she lost weight and is 17.14 pounds again :( this is going to be a challenge for us since she is a mobile 2 year old! Janessa will be celebrating her second birth on Sunday, hopefully not here in the hospital.
Well I have to go, Janessa needs a nap! Sorry for any spelling or grammar errors as usual!
So far we have had many issues with her GJ so clogged that we can't drain it, she has been throwing up so much that finally someone is calling the IR team to change it, hopefully they will do it either today or tomorrow. Janessa's viral panel came back positive for a virus, she has a pretty nasty cold going on, and she is just so exhausted and weak, but keeps fighting it. Her central line came back positive for staph on the 17th but was negative for the 18th so we think her line is a contaminate, if it's negative for the 19th, then her line is clear of infection. Her peripheral is clear, her stool is clear, and her urine is always positive as usual.
The doctors are upping her TPN to 20 hours because she lost weight and is 17.14 pounds again :( this is going to be a challenge for us since she is a mobile 2 year old! Janessa will be celebrating her second birth on Sunday, hopefully not here in the hospital.
Well I have to go, Janessa needs a nap! Sorry for any spelling or grammar errors as usual!
Wednesday, March 14, 2012
March 14th 2012: A Delay, But A Great One!
Sorry everyone for the delay in my update! My computer completely crashed on me and I had to buy a new one! It finally came today, and I can finally update the Janessa blog!! Well where to start, today was such a beautiful day, Janessa has been doing well, but she has been throwing up a lot lately, she has been having a lot of issues where she has been eating her crib, and other wooden objects such as her toys, or her toybox that we had to resort to putting her toys away and have her sleep in her playpen! It's been clogging up her gtube, and we have been having a hard time draining it. It times about an hour to drain her stomach completely at times, but we get it done. It's been pretty hard on her since we had to cut down on her intake.
In her ICARE news that I haven't updated most of you on, Janessa has dropped from her 5 organ transplant down to just an isolated bowel transplant of course with a colon added on since hers is a microcolon! We are just so happy about this because she was put on the 5 organs originally because her liver was failing when she was a newborn, and it's healed! She also has dropped to status 2 on the transplant list, which is fine by us because Caleb and I both decided we were not ready to put our baby girl under the knife yet especially because we feel her quality of life is alright right now. It's hard to make such a decision like that, both TPN and transplant have their pros and cons, neither is a cure, and both have their benefits and risks depending on the child. Transplant will always be an open option for us, but as time progresses so does the success of transplant and modern medicine. We will be going to Columbus Ohio in the next few months to do motility testing to see how her stomach and bowels contract, and if there is any kind of motility medicines out there that might be successful for her. I like to keep an open mind that it might help her out, but I always have to keep in the back of my head that it may not, and not to get my hopes up. Janessa finally also gained a little bit of weight, she is near 19 pounds after being 18 for 5 months! This has happened since we increased her TPN by 2 hours, and continued her GJ feeds. We also started ferrous sulfate(Iron) into her GJ so hopefully we can avoid so many blood transfusions, and get down to this wood eating problem she has.
Janessa still is not walking on her own, but she has shown a huge interest in walking while holding our hands, even with her little backpack on! We are hoping by summer she will be walking, and will be catching up physically to where she should be!
To finish off this wonderful blog post, I would like to say congrats to my dear friend Brianna, she had her beautiful baby boy yesterday on the 13th, and he is just beautiful!!! :)
I will update everyone soon on our next ICARE appointment! <3
In her ICARE news that I haven't updated most of you on, Janessa has dropped from her 5 organ transplant down to just an isolated bowel transplant of course with a colon added on since hers is a microcolon! We are just so happy about this because she was put on the 5 organs originally because her liver was failing when she was a newborn, and it's healed! She also has dropped to status 2 on the transplant list, which is fine by us because Caleb and I both decided we were not ready to put our baby girl under the knife yet especially because we feel her quality of life is alright right now. It's hard to make such a decision like that, both TPN and transplant have their pros and cons, neither is a cure, and both have their benefits and risks depending on the child. Transplant will always be an open option for us, but as time progresses so does the success of transplant and modern medicine. We will be going to Columbus Ohio in the next few months to do motility testing to see how her stomach and bowels contract, and if there is any kind of motility medicines out there that might be successful for her. I like to keep an open mind that it might help her out, but I always have to keep in the back of my head that it may not, and not to get my hopes up. Janessa finally also gained a little bit of weight, she is near 19 pounds after being 18 for 5 months! This has happened since we increased her TPN by 2 hours, and continued her GJ feeds. We also started ferrous sulfate(Iron) into her GJ so hopefully we can avoid so many blood transfusions, and get down to this wood eating problem she has.
Janessa still is not walking on her own, but she has shown a huge interest in walking while holding our hands, even with her little backpack on! We are hoping by summer she will be walking, and will be catching up physically to where she should be!
To finish off this wonderful blog post, I would like to say congrats to my dear friend Brianna, she had her beautiful baby boy yesterday on the 13th, and he is just beautiful!!! :)
I will update everyone soon on our next ICARE appointment! <3
Friday, January 6, 2012
January 6th 2012: What A Year
2011 was a great year for Janessa, we had a few incidents the occurred from August - November, but nothing that wasn't helped by Children's of Pittsburgh. We also met a few great people this year, that I hope to remain in contact with, and hope that Janessa grows with within the years to come! Janessa this year has walked a long path, and has did very well, I am grateful that everyday I have her in my life, and I am willing to do anything in my power to keep her as well as possible and as I am sure as a lot of others who are experiencing this lifestyle with their children and family members as well their main priority is to keep their them happy, and to strive to keep them alive. <3 I hope that I can meet other TPN families this year, hopefully not in children's of course, because I want Janessa to meet others just like her, to know that she is not alone, and the world is full of possibility.
Janessa had her GJ tube put in on December 22nd, she did pretty well with it, it seemed like it irritated her for a few days at first and her pediasure peptide may have been a bit complex for her, but her neocate JR seems to be working well for her! We are hoping this will put some weight on her, but as with her diagnoses we can't get our hopes up because there is always a possibility it just won't happen. I'll update you guys once we get an idea on how much she really is absorbing and if she is gaining any weight on this new method, it's hard to imagine she would because she's starting out on such a small amount, but hey you never know!!
Marybeth
Sorry for any grammar errors I'm a bit tired :)
Janessa had her GJ tube put in on December 22nd, she did pretty well with it, it seemed like it irritated her for a few days at first and her pediasure peptide may have been a bit complex for her, but her neocate JR seems to be working well for her! We are hoping this will put some weight on her, but as with her diagnoses we can't get our hopes up because there is always a possibility it just won't happen. I'll update you guys once we get an idea on how much she really is absorbing and if she is gaining any weight on this new method, it's hard to imagine she would because she's starting out on such a small amount, but hey you never know!!
Marybeth
Sorry for any grammar errors I'm a bit tired :)
Monday, December 12, 2011
December 12th 2011: She's Getting So Big!
Janessa is getting so big, she's now finally starting to walk with me while I hold her hands, as soon as she gets a bit of balance to her step I'm sure she will be off soon! Janessa's vocabulary has really advanced as well, she refers to our cat as kitty kitty kitty, and is starting to have a large variety of words to match objects or wants with. Not much is really going on with Miss Janessa which I am extremely happy about. She went to Children's hospital on Friday for a Kidney Ultrasound and urology examination, her kidneys look great, and her bladder is big as always which is good for Janessa's kidneys.
Not much else to write, except she will be getting her GJ placed on the 22nd of this month
Not much else to write, except she will be getting her GJ placed on the 22nd of this month
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