Well....
The wedding photos are now available courtesy of my dear friend, Melissa Brewer with Snapped with Love Photography. I couldn't be happier with the end result. Come on by and take a look!
http://paulkbunch.shutterfly.com/
Have a great weekend,
J
Showing posts with label Mom. Show all posts
Showing posts with label Mom. Show all posts
Friday, January 27, 2012
Monday, October 24, 2011
Where's my UMBRELLA??
WHERE'S MY UMBRELLA?? The state of Texas has been going through the worst drought since the sixties, yet in our house, it doesn't seem to stop RAINING. I know that the rain will stop eventually, but it's just hard sometimes to wrap my head around everything that is happening.
Just when I got Sophie out of the hospital, now Aiden's sick again. His tubes that were surgically placed in his ears just over a year ago have dislodged and now he has to have surgery again. Any time an epileptic has surgery, it can be bad. Praying to God for a positive outcome and that he does well. This time, we suspect the surgeon is going to take the Tonsils and Adenoids also. She's the same surgeon that did Sophie's surgery and I do trust her. And I know that this is a blessing, because I know the surgery will help him (as it did last time) but I just want them both to be HEALTHY for ONCE! And, I'd really like to have some BORING days for a change, but that probably won't be the case because both the kids are just going to have to deal with the chronic problems that they both have. Which means, I get to develop thick skin, and some coping mechanisms. It also means that hopefully, throughout all of this, the kids will both be stronger people and I will somehow keep my sanity.
I am pleased to say, Sophie is back at school today! She has a letter of modification saying that she can be excused from PE and she needs to carry a water bottle with her but she's there. She is still REALLY light headed and not feeling well, but she's been told that she's just going to have to cope with it as well as she can, and we see the neurology team at TCH during the first week of November. I have also coached her that she needs to get up SLOWLY when she stands, and not overdo it. We will let you know what the plan is from there. Just so you know, the oncologist said that the Dysautonomia is not connected to the Histiocytosis and was likely present before the Histiocytosis diagnosis. It's just completely and totally frustrating that the episodes keep happening. I can't do anything but sit and watch it happen when it does. Luckily with some of the medications they have prescribed her, her symptoms are lessening a little bit. I pray that will continue. She had a couple of bad sinking spells last night.
Here is some information about Disautonomia:
About this weekend…. I got away to see the Amazing Mr. P, and to clear my head. IT WAS TIME WELL SPENT!!! And, Sophie was at her dad's for the weekend. I did have to take Aiden to the pediatrician Saturday morning, but Adam's mom is a nurse so I thought it would be safe to take Aiden up there and get away from the rain for a little while. I had the time of my life. We witnessed two of his good friends getting married, which was beautiful. He is a Captain in the military and has served in Afghanistan, so it was a powerful service. I got complimented to no end about my amazing man, and what a difference his friends have seen in him since we started dating. I was totally humbled and honored (as I am by him much of the time anyway) by what all they said about him. He's an Amazing guy, and this was all confirmed AGAIN for me this weekend. And, to top it off, his oldest boy was baptized this weekend and I got to see it. I couldn't make it to his daughter's recent baptism because I was laid up from back surgery, but I was honored to be there for JR's baptism. It's an awesome and powerful moment to see a child decide for themselves that they want to invite Christ into their heart. Few things compare.
It always touches me when I am part of these Mountaintop moments in his life. I am so glad I went up to the hill country and got a chance to get away and things look more manageable now. Between doctors visits, medication dosing, and managing the responsibilities of a full time job, it does get overwhelming. I just see bright things on the horizon and I know that all is not lost. And, I know that God must think I'm really strong, because he keeps giving me more than I can handle. He's stretching me pretty thin, but somehow I know it'll be okay. God brought the Amazing Mr. P and I together and has changed us both from the inside out for the past few years, preparing us for each other. I can't wait to be his wife!
Have a great day friends,
J
Sophie
This was Last Monday... She was hospitalized for three days following this blog post...
I don't even know where to start. Sophie's not doing very well this morning. Her mobility is really decreased. We're waiting on TCH neurology to get back in touch with us, but we're having to wait several weeks to get in, and though she slept through the night, she did end up in my bed early this morning and was so dizzy this morning that she couldn't even walk down the hall without holding on to stuff. I even had to help her get dressed. She also said that she's having trouble showering, though she hasn't yet asked me to help her with that. I think it's just a matter of time. She gets so dizzy and nauseous every time she stands up. I'm wondering if I can rent a wheelchair or walker to help her get around. I don't think it's something that we need permanently, but it would do a lot in her being able to get out of the house. I can't carry her because of my back surgery (and the fact that she weighs over 130 pounds), but with her dizziness she can't do much... Contrary to today, Sophie had a good day yesterday. She was able to go to Kids XD. It did totally wipe her out, but she went, which I thought was good for her, considering... She got very nauseous and dizzy and lightheaded before bed and had a low grade temp. Adam's kids were here, so I think she wanted to put on a brave face for them.
I don't even know where to start. Sophie's not doing very well this morning. Her mobility is really decreased. We're waiting on TCH neurology to get back in touch with us, but we're having to wait several weeks to get in, and though she slept through the night, she did end up in my bed early this morning and was so dizzy this morning that she couldn't even walk down the hall without holding on to stuff. I even had to help her get dressed. She also said that she's having trouble showering, though she hasn't yet asked me to help her with that. I think it's just a matter of time. She gets so dizzy and nauseous every time she stands up. I'm wondering if I can rent a wheelchair or walker to help her get around. I don't think it's something that we need permanently, but it would do a lot in her being able to get out of the house. I can't carry her because of my back surgery (and the fact that she weighs over 130 pounds), but with her dizziness she can't do much... Contrary to today, Sophie had a good day yesterday. She was able to go to Kids XD. It did totally wipe her out, but she went, which I thought was good for her, considering... She got very nauseous and dizzy and lightheaded before bed and had a low grade temp. Adam's kids were here, so I think she wanted to put on a brave face for them.
God please help us get through this. Help the doctors realize that she is my HEART and she NEEDS to be seen! Give us peace.
Amen.
Have a good day friends,
J
Monday, October 10, 2011
We have to do WHAT?? (and an update on the kids)
We have to do WHAT? A marriage class? But we've done this before! lol
I want to start tonight by saying, I have the most amazing fiance in the world. He has had to endure so much with us this year. From Histiocytosis (www.histio.org) that appeared in my daughter's system, literally days after we met, to Epilepsy and immune system issues with my son, the AWESOME Mr. P gets his name from being my rock, my fortress and the man I truly truly respect and look up to. He exhibits such grace and class and is a calming force in times of trial, and lately we've really seen our share... And he's romantic and loving and kind to my children, he has a heart for God and is more than I ever could have dreamed to find. I am blessed to know him. It has been one year today since the day we met, and I am a better person having him by my side. I can't wait to become the Awesome Mrs. P!
So, with some trepidation, I enrolled. I had no idea how this would work; the Awesome Mr. P in another city, and me in Houston, but we'd give it a shot. We were both committed and wanted to be certain we were prepared in every way to walk down the aisle next June. So, we did it. I talked to the director of the class to be sure that doing the Skype thing would be alright with everyone, and they agreed. The Awesome Mr. P and the Future Mrs. P (that's me) would both be going through this journey toward marriage, even though we would have to work out the technical side of the course as we went along.
The course we are studying is called Love and Respect by Emerson Eggerichs. I read through my workbook that first night, just to be SURE that what he was saying was going to go in line with what I wanted for MY marriage. It makes me laugh now, because I was being such a girl. MY marriage? REALLY? I am certainly NOT the kind of girl that wants to wear the pants, and there I was trying to take control of the situation, and what I needed to think about was how I was going to LET Mr. P take the reins, and through that, let God take the reins.
What the course is about is the point that men need RESPECT like they need air to breathe. They would rather be left alone and unloved out in the cold than be disrespected by peers. Women on the other hand, need LOVE like they need air to breathe. Not that they don't need respect and men don't need love, but it's a different level of need. This is a critical NEED. Women would rather be disrespected by their peers than be left out alone and unloved. (para. Eggerichs)
I was always sure I was a relatively liberated woman, until I heard what he had to say... you may not completely agree with him, but I do think he's doing a lot to teach us not only how to respect and love each other through the vows of marriage, but also how to better parent our sons and daughters. He talks at great length about how the unkind words and tumultuous marriage of his parents led to major insecurities on his part that he has been working his whole life to resolve. I don't ever want my kids to hurt like that.
Update on the kids...
I want to start tonight by saying, I have the most amazing fiance in the world. He has had to endure so much with us this year. From Histiocytosis (www.histio.org) that appeared in my daughter's system, literally days after we met, to Epilepsy and immune system issues with my son, the AWESOME Mr. P gets his name from being my rock, my fortress and the man I truly truly respect and look up to. He exhibits such grace and class and is a calming force in times of trial, and lately we've really seen our share... And he's romantic and loving and kind to my children, he has a heart for God and is more than I ever could have dreamed to find. I am blessed to know him. It has been one year today since the day we met, and I am a better person having him by my side. I can't wait to become the Awesome Mrs. P!
So, with some trepidation, I enrolled. I had no idea how this would work; the Awesome Mr. P in another city, and me in Houston, but we'd give it a shot. We were both committed and wanted to be certain we were prepared in every way to walk down the aisle next June. So, we did it. I talked to the director of the class to be sure that doing the Skype thing would be alright with everyone, and they agreed. The Awesome Mr. P and the Future Mrs. P (that's me) would both be going through this journey toward marriage, even though we would have to work out the technical side of the course as we went along.
The course we are studying is called Love and Respect by Emerson Eggerichs. I read through my workbook that first night, just to be SURE that what he was saying was going to go in line with what I wanted for MY marriage. It makes me laugh now, because I was being such a girl. MY marriage? REALLY? I am certainly NOT the kind of girl that wants to wear the pants, and there I was trying to take control of the situation, and what I needed to think about was how I was going to LET Mr. P take the reins, and through that, let God take the reins.
What the course is about is the point that men need RESPECT like they need air to breathe. They would rather be left alone and unloved out in the cold than be disrespected by peers. Women on the other hand, need LOVE like they need air to breathe. Not that they don't need respect and men don't need love, but it's a different level of need. This is a critical NEED. Women would rather be disrespected by their peers than be left out alone and unloved. (para. Eggerichs)
I was always sure I was a relatively liberated woman, until I heard what he had to say... you may not completely agree with him, but I do think he's doing a lot to teach us not only how to respect and love each other through the vows of marriage, but also how to better parent our sons and daughters. He talks at great length about how the unkind words and tumultuous marriage of his parents led to major insecurities on his part that he has been working his whole life to resolve. I don't ever want my kids to hurt like that.
Update on the kids...
Sophie is battling a sinus infection and also had a biopsy on Thursday of some spots that flared up on her arm. Additionally her oncologist has requested that she come in on Thursday of THIS week to have a few additional biopsies of places on her skin. Eventually we will get some results. The not knowing gets me every time...
Aiden has his own share of issues this week. He has an ear infection (again) because his tubes have dislodged. And, the ENT wants to take his tonsils and adenoids out as well, but we can't seem to get him well enough long enough to do the surgery. She started him on a new antibiotic today and we are hopeful that it will help. For the four days of "healthy" we had this month, I am truly grateful. Here are some pictures from those days....
Goodnight friends,
J
Tuesday, September 6, 2011
Crazy Day!
Well, I had to be away from the office today... BOTH kids were sick. So here's the scoop on everyone...
Sophie has some sort of bug. It latched on Saturday and didn't really let go. She still managed to play and put on a smile when Adam and the kids were here, but she was very tired and congested. Last night she broke out into a horrible sweat and drenched her bedcovers with perspiration. I woke her up and gave her some Motrin because she felt hot, but she didn't have a temp, from what my thermometer read. She is really only one half the reason I stayed home. I needed to take her in and figure this out. I knew Dr. D would have an answer. She didn't know EXACTLY what it was, but said she suspected it was viral. So we wait... She said she'd either start to get better in 3-6 days or worse. ugh...
Aiden's been sick for weeks and though I thought he might be getting better, he took a turn for the worse over night last night. He can't breathe well at all and has so much congestion, I had no clue what to do for him. So, after myself or my mom sleeping with him for the last four nights in a row, nudging him because he would stop breathing in the middle of deep sleep, we knew it was time. Dr. D said it was a bad infection of the sinus and that he had some fluid in his lungs. When the doctor looks down at your kid and says, "poor little guy", you know it's not good. So, she prescribed an antibiotic and a breathing treatment for every six hours, she encouraged us to go see our ENT (the one who also diagnosed Sophie's Histiocytosis whom we love) TODAY. She urged us to call and say that she said that he needed to be seen. So, later this afternoon we got in to see the ENT.
Sophie was so cute, she insisted on going with us, because she wanted to thank her herself. I thought that was SO sweet. We got into see her, and the first think she said when she saw Sophie (who still felt kinda lousy) was, "You're a celebrity", obviously referencing the Katy Magazine article. You can read it here: http://www.katymagazine.com/blog/wp-content/uploads/Katy-Texas-My-Story-Helping-Sophie-Heal-Katy-TX.pdf. I thought that was SO sweet! Sophie just smiled and blushed. I don't think she knew how to handle it. Then we got down to business... li'l man was siiiick.
She looked in his ears with the otoscope and said that his tubes (installed on 2010) had dislodged and that one of his ears was pretty infected also. She said that we needed to let this upper respiratory/bronchial thing play out and then she would recommend a tonsillectomy/adenoidectomy for li'l man. She wants to follow up in six weeks. Knowing how sick he gets when he gets sick (high fevers, seizures) and that his snoring has gotten significantly worse as he's grown, she really understands his case and we think she knows what is best. I believe we will schedule the surgery and she said he may have to have a new set of tubes in his ears at that time. I prayed to God that no one in our family would have to have surgery for the remainder of this year, but sadly not the case. While we were there she also observed that Aiden hasn't gained any weight since April. 31 pounds and holding.
It's frustrating because I have one kid who looks at a brownie and gains 10 pounds and another who can't gain weight though he eats... a LOT... Well I guess another day, another bunch of fun for us.
On another note I had a great weekend with the AMAZING Mr. P and his brood of gorgeous and precious children. Here are some fun pictures to enjoy!
Sophie has some sort of bug. It latched on Saturday and didn't really let go. She still managed to play and put on a smile when Adam and the kids were here, but she was very tired and congested. Last night she broke out into a horrible sweat and drenched her bedcovers with perspiration. I woke her up and gave her some Motrin because she felt hot, but she didn't have a temp, from what my thermometer read. She is really only one half the reason I stayed home. I needed to take her in and figure this out. I knew Dr. D would have an answer. She didn't know EXACTLY what it was, but said she suspected it was viral. So we wait... She said she'd either start to get better in 3-6 days or worse. ugh...
Aiden's been sick for weeks and though I thought he might be getting better, he took a turn for the worse over night last night. He can't breathe well at all and has so much congestion, I had no clue what to do for him. So, after myself or my mom sleeping with him for the last four nights in a row, nudging him because he would stop breathing in the middle of deep sleep, we knew it was time. Dr. D said it was a bad infection of the sinus and that he had some fluid in his lungs. When the doctor looks down at your kid and says, "poor little guy", you know it's not good. So, she prescribed an antibiotic and a breathing treatment for every six hours, she encouraged us to go see our ENT (the one who also diagnosed Sophie's Histiocytosis whom we love) TODAY. She urged us to call and say that she said that he needed to be seen. So, later this afternoon we got in to see the ENT.
Sophie was so cute, she insisted on going with us, because she wanted to thank her herself. I thought that was SO sweet. We got into see her, and the first think she said when she saw Sophie (who still felt kinda lousy) was, "You're a celebrity", obviously referencing the Katy Magazine article. You can read it here: http://www.katymagazine.com/blog/wp-content/uploads/Katy-Texas-My-Story-Helping-Sophie-Heal-Katy-TX.pdf. I thought that was SO sweet! Sophie just smiled and blushed. I don't think she knew how to handle it. Then we got down to business... li'l man was siiiick.
She looked in his ears with the otoscope and said that his tubes (installed on 2010) had dislodged and that one of his ears was pretty infected also. She said that we needed to let this upper respiratory/bronchial thing play out and then she would recommend a tonsillectomy/adenoidectomy for li'l man. She wants to follow up in six weeks. Knowing how sick he gets when he gets sick (high fevers, seizures) and that his snoring has gotten significantly worse as he's grown, she really understands his case and we think she knows what is best. I believe we will schedule the surgery and she said he may have to have a new set of tubes in his ears at that time. I prayed to God that no one in our family would have to have surgery for the remainder of this year, but sadly not the case. While we were there she also observed that Aiden hasn't gained any weight since April. 31 pounds and holding.
It's frustrating because I have one kid who looks at a brownie and gains 10 pounds and another who can't gain weight though he eats... a LOT... Well I guess another day, another bunch of fun for us.
On another note I had a great weekend with the AMAZING Mr. P and his brood of gorgeous and precious children. Here are some fun pictures to enjoy!
Hopefully the kids are going to continue to see better days in spite of the stress we are having to go through now. I am so completely grateful that I have my family to stress about. I also am really blessed to have such an AMAZING fiance to lean on. And, he knows he can lean on me to. I know the next 9 months are going to fly by. I can't wait to marry him! I just pray that my kiddos are heeealthy!
May the Lord Bless You and Keep You Tonight, Dear Friends,
J
Wednesday, August 31, 2011
What the???
Sophie
Ladies First, so we'll talk about Sophie first. Sophie is doing really well, a happy fourth grader. I am hopeful that she won't have any symptoms having to do with her Histiocytosis EVER, and the doctor has cleared her to wait 'til November to see him at the Cancer Center, which is a HUGE BLESSING! Because of the delay in needing scans, we went ahead and travelled over to the Merle Norman store and got her ears pierced! She's a big girl now and I think this was a real coming of age moment for her. She's not a "little girl" anymore, even though she will always be my precious little girl. I am so excited for the girl she is and the woman she is becoming. Amazing to watch!
Ladies First, so we'll talk about Sophie first. Sophie is doing really well, a happy fourth grader. I am hopeful that she won't have any symptoms having to do with her Histiocytosis EVER, and the doctor has cleared her to wait 'til November to see him at the Cancer Center, which is a HUGE BLESSING! Because of the delay in needing scans, we went ahead and travelled over to the Merle Norman store and got her ears pierced! She's a big girl now and I think this was a real coming of age moment for her. She's not a "little girl" anymore, even though she will always be my precious little girl. I am so excited for the girl she is and the woman she is becoming. Amazing to watch!
Aiden
Aiden is having more struggles than normal lately, however. It's upsetting to me to talk about, because he's been through so much. He's such a remarkable survivor. I never thought I'd be sitting her writing about Aiden. After all, I didn't expect him to make it out of the NICU after 32 days being born at 30.5 weeks with too many apneas and bradycardias to count as well as a level III IVH... much less, make it to two years, four months old! But... back to my point, he is currently having struggles with seizures and his Cerebral Palsy. He appears to have a greater degree of weakness in his lower extremities than we had originally suspected and is continuing to sit in a "W" posture, like a baby in lieu of "criss cross" like most kids are able to do at his age. He is also having no right or left handedness and is struggling with gross and fine motor skills especially on his right side. Thankfully, the ECI people are getting involved again and have recommended him for physical and occupational therapy. This is a great intervention and helped him immensely when he was enrolled when he was 6 months old.
Aiden is having more struggles than normal lately, however. It's upsetting to me to talk about, because he's been through so much. He's such a remarkable survivor. I never thought I'd be sitting her writing about Aiden. After all, I didn't expect him to make it out of the NICU after 32 days being born at 30.5 weeks with too many apneas and bradycardias to count as well as a level III IVH... much less, make it to two years, four months old! But... back to my point, he is currently having struggles with seizures and his Cerebral Palsy. He appears to have a greater degree of weakness in his lower extremities than we had originally suspected and is continuing to sit in a "W" posture, like a baby in lieu of "criss cross" like most kids are able to do at his age. He is also having no right or left handedness and is struggling with gross and fine motor skills especially on his right side. Thankfully, the ECI people are getting involved again and have recommended him for physical and occupational therapy. This is a great intervention and helped him immensely when he was enrolled when he was 6 months old.
And, last night he had a seizure again. It's so hard to deal with, especially right now considering I can't lift him because I am only three weeks out from having the back surgery. It was about 10:45 when I was getting ready for bed and I heard this rustling and whimpering coming from his room. He then started SCREAMING bloody murder from his crib. I walked in to find him on his back (he's a tummy sleeper) and he was all spread eagle which is the position is is usually in after a seizure. He always has this kind of powerful reaction after a seizure. Sophie even woke up, jumped out of bed, and helped me by carrying her screaming little brother into my room. I got him a warm wash cloth and laid down next to him and attempted to wipe his face and head and calm him. But, at that point, he was still screaming for Nanny. I called her and let her know she needed to come because I thought more seizures were eminent. For a few moments before she arrived, Aiden calmed down a little bit because we were able to FaceTime with Adam (aka. The Amazing Mr. P). Once mom arrived, he was really foggy looking, just staring off into space once he calmed down, for what seemed like forever. He just laid there with his eyes open in a daze. Eventually, he fell asleep, but I think the whole thing just freaked him out. He's getting to the point where he is able to formulate more thoughts and put together sentences so I can only imagine he was thinking, "what the HECK just happened to me?". Obviously he doesn't remember what happened before... Babies just don't remember that far back.
Once Aiden was back in his bed, I went in to check on Sophie who had, understandably, migrated back to her room. She was still awake (barely) and I told her how amazing she was and how I hated that she had to help, but was so thankful that she had been there to lift Aiden last night. Again this morning, I praised her efforts and quick thinking because she knew what had happened. She heard and seen the whole thing. I just hate that she had to be so close to this, it scared her to death, but some instinct kicked in and she just did what she needed to do to help him. It was an incredible sight to see.
It's days like this, tired, and hurting when I am so thankful for my fiance. He was so soothing to Aiden last night. He said one word and Aiden looked at the screen and instantly just calmed down. I really don't think Adam knows just how much this meant to me. He's such an amazing dad. I cried like a baby when it was all over. I just curled up and laid in my bed, powerless to hold or console Aiden, and I just felt completely incompetent. I went into the living room about an hour or so after my mom took Aiden, and saw them cuddled up on the couch. Yet, Aiden still laid there with eyes like saucers. I then suggested that mom lay Aiden back down.in his crib so maybe he would calm down the rest of the way and sleep.
Me
As far as I am concerned, other than having a few new gray hairs because I have had to rest so much and can't tend to my kids like I would like, I do get stronger each day. I am working full days now, but have to lay down after each work day and I also have to walk quite a bit during the day so I don't get too stiff. I am really ready to go home and lay down at the end of the day, but I am enormously thankful to be back at work. The routine and the challenges of the work day really help.
We are contemplating looking into a service animal for Aiden. I want to collect information and see if this would be a good idea to help recognize when Aiden is about to have a seizure.
After what happened, I realize several things about my life. I am happy in spite of having some rough days mixed in sometimes. Everyone has those. My kids are phenomenal little miracles and I am so blessed to have the family that surrounds me and the love that is around to support us and keep us sane. I am most thankful also, for the love of Christ, without whom I don't know sometimes how I'd get through this. Just remember, when you give your life over to Him, He doesn't guarantee that things won't be awful sometimes, He just guarantees you won't ever be alone.
I don't want to slam anyone over the head with the God thing, but it's so true and it's truly changed EVERYTHING. I have a comfort and strength about me that I haven't ever had before. That's all because of God. I just know that even if he doesn't deliver us from our struggles and we have to endure CP, Epilepsy and Histiocytosis for the rest of our lives, at least we will be surrounded by the love of Christ. And, at least I have two beautiful children to share these moments with. I am blessed to have one more day to tend to a seizure, to wipe away someone's tears or be by their bedside if they need chemo one day. I am thankful, humbled and thankful.
Have a great day friends,
J
Wednesday, August 24, 2011
THANKS Y'ALL!
Well I can tell you one thing, it's a LOONG road to normal from this back surgery. I'm relieved to feel better after all the pain I had suffered with for so long, but it's just hard to readjust as well as deal with not being able to pick up my son or travel anywhere for six weeks!
I had back surgery on 08/08/2011. It was a lumbar laminectomy microsurgery aka. microdiscectomy (see earlier post). I am slowly but surely getting back to normal, but am not on nearly so much medication and the pain is very real, though it does get better with each day. I have read all of the latest fashion magazines, am up to speed on the bridal trends of this year and I know all about a family I never wanted to know named Kardashian. I never thought I'd be so entrenched in pop culture at my age, but that's what happens when you can't do anything. On the bright side of things, I am gradually getting back to normal.
I just wanted to let y'all know we're hanging in there. And, it's not like we haven't had anything newsworthy to talk about, but I am physically challenged when it comes to sitting upright. I will update you more as time goes by and I continue to heal.
Tonight, I just wanted to stop by to say THANK YOU for your prayers and support during the surgery. The flowers and gifts were GORGEOUS! Additionally, I am humbled by the generosity of those of you who brought meals by for us. I am extremely grateful to have such wonderful family and friends right now. Thank you SO SO SO SO much!
Big hugs going out your way tonight friends,
J
I had back surgery on 08/08/2011. It was a lumbar laminectomy microsurgery aka. microdiscectomy (see earlier post). I am slowly but surely getting back to normal, but am not on nearly so much medication and the pain is very real, though it does get better with each day. I have read all of the latest fashion magazines, am up to speed on the bridal trends of this year and I know all about a family I never wanted to know named Kardashian. I never thought I'd be so entrenched in pop culture at my age, but that's what happens when you can't do anything. On the bright side of things, I am gradually getting back to normal.
I just wanted to let y'all know we're hanging in there. And, it's not like we haven't had anything newsworthy to talk about, but I am physically challenged when it comes to sitting upright. I will update you more as time goes by and I continue to heal.
Tonight, I just wanted to stop by to say THANK YOU for your prayers and support during the surgery. The flowers and gifts were GORGEOUS! Additionally, I am humbled by the generosity of those of you who brought meals by for us. I am extremely grateful to have such wonderful family and friends right now. Thank you SO SO SO SO much!
Big hugs going out your way tonight friends,
J
Tuesday, August 9, 2011
Surgery for Mommy, Medical Message and Prayer
Well I kissed and hugged sweet Sophie good-bye when my mom and dad arrived that morning at 6:30am. Mom was waiting in the car for me so we could make our way to Methodist for the surgery. One that had been on the back burner for way too long because of Sophie and Aiden's health issues. But, now that my GI Doctor had cut me off of all Anti-Inflammatory drugs because my stomach has been torn to shreds, it was time to make a decision. It's not like I can be on pain medicine for the rest of my life, and I have been on it for way too long... It was sad to say good-bye to Sophie knowing that the last time she had heard the term "surgery" it was she who was going under the knife. Petrified, my little one was up at 5:45am to be sure she could see Mommy before I left. I assured her that the kind of surgery I was having wasn't to "find out what it is", but rather we already know what it is because of the fancy pictures I had shown her on the MRI, and that my surgery was so I could walk better and have less pain. She acted like she was all right with that, so with a tight squeeze, I was out the door.
The ride to the hospital was by far one of the longest I had EVER had. The preop instructions forbade me from taking my pain meds or eating or drinking anything past midnight. After review of the preop instructions, I also noticed something VERY disturbing. There seemed to be some debate on whether they were operating on my right or left side of the L5-S1 disc. I definitely wanted to get that cleared up ASAP!!! I thought I distinctly remembered them saying LEFT, and since that's where the majority of my pain has been, I had to make certain to clear that up. During the painful drive there (NPO after midnight, remember) I felt every bump, every jerk of the wheel, every stop light... Excruciating! The good news is that my sainted mother drove me to the hospital and stayed there for what was probably a gut wrenching day for her, and the pain I was in also quite literally drove home the need for the surgery. When we got to the check in desk, we were pointed to the preop room where I was told by the nurse there that I could have had the pain med after all! WHAT??? Ugh! I asked if I could have one to take the edge off while we waited. I was the second surgery of the day. She said yes, and that she was so sorry that the pre-op group hadn't explained this. I downed the medicine with a tiny wallow of water and started to feel a little better and had a short siesta.
Just then there was a knock on the door. It was anesthesia. A nice young woman walked in to get a brief history on me and before she could start her spiel, I said, "There's one big question mark here. Is it Left or Right???" She assured me with a blank stare, that I would have a chance to talk to the Neurosurgeon BEFORE I was cut on, so I listened to her. She was a bit perplexed herself and I did notice her looking through the file where she saw that the word "right" had been written repeatedly. She told me that she just did the anesthesia side, but would voice my concern. I felt a bit like a child getting a pat on the head at that point... Could someone PLEASE answer this question?? Ugh
The transport team walked in as anesthesia was wrapping up, and said, "They're ready for you!", to which I said, "nobody's cutting on me without knowing what side... MMMkay!!!???" Just about that time, the doctor rounded the corner and said, "I know you", trying to be clever. I said, "Good to see you, Doc, could you PLEASE tell me what side you're cutting on? There seems to be some confusion on the paperwork!". He then pulled out an index card that said, "Morgan, L5-S1, Left", and showed it to me. He then asked, "what side is the pain on?" and I said "BOTH". He then said, "Well if the pain is on both, doing a discectomy on the left only won't help much, will it? What did the consent say that you singed?" I replied, "I thought it said Right" but then I explained that I thought that the resident that was with him that day I came for my office visit said Left Side L5-S1! " He then directed the transport staff to wheel me back into the room to wait some more. He said that he would get to the bottom of it. He was IRRITATED at the nursing staff that hadn't properly prepared the forms. He told us he would go prepare new forms and would go look closer at the MRI. Upon his return, he said, it's definitely a LEFT L5-S1 herniation, and it's a BIG DISC," and he went further to explain that it was large enough and could very well be causing the bilateral pain I've been having. He then took hid sharpie out and marked on my skin where he would operate.
So, new consents were hastily signed and they rolled me in to get the IV installed and I was sure we were almost there. Someone asked, "is 10 ready?" and they yelled yes and pushed me down through Dunn Tower OR to room 3. I saw all the docs and nurses lining the halls and exclaimed, "Are we having fun yet?" just another day at the office for them, One of the British doctors looked down and said, "Good luck, and thanks for asking". The transport team stopped me in the hall in front of OR3. A nice young nurse came in and said, "I'm a nurse anesthetist that has a cocktail that makes you relax"... We got to talking about the anesthesia (I guess I get talky when I am on the medicine. I thought, "Relaxing Is good at this point", and I pleaded with her to put me WAY under and we both laughed. I could tell that this wasn't her first rodeo. They wheeled me into the OR, and then the anesthesiologist came in and put a mask over my nose and mouth. She said that it was just oxygen and told me to think of happy things to think about, so naturally I started thinking about Adam and our upcoming nuptials. As I looked around I noticed the neat stereo equipment and TV set up in the OR. Pandora Radio - fully wired. Adam had told me how they listened to Pandora in the OR at Scott & White, but this set-up was neat. It almost made me want to be awake so I could rock out with them. Nah, not quite....
So the next thing I remember, I am waking up in ACUTE pain in recovery. I started crying and gasping for air and was trying to say, "Help me", but no one could hear me because my voice was so hoarse. I looked around and couldn't see a nurse or anything much because my eyes felt like they were glued shut. I finally got them opened, and tears ran down my face. I finally saw a nurse, who said that everything was going to be okay as she pushed some pain meds through my IV. At that point, I got really sick and was glad she was right there at that point. Her name was Liz. She kept saying, "It's okay honey, deep breaths", and told me to think of family... friends... things I like to do for fun... I quickly came around and she gave me something for nausea. I felt so much better. My first question for the nurse, besides "Help me?" was "How long did he actually operate?" and she said an hour and a half. TWICE the time he told us that it would take in the pre-op area. I wondered what went wrong and she said that she would look into it and either she would let me know or the doctor would.
At this point, I am sure I was talking Liz's ear off. I told her about the C-section recovery nurse, Shannon that had been such a wonderful comfort during the moments after Aiden's birth at 30 weeks gestation. I expressed my gratitude for recovery room nurses and shared with her the story of the recovery room nurses that meant so much comfort to Sophie during her recovery from the curettage of her Histiocytosis tumor. The world greatly underestimates good nurses! Having had both yesterday, I was thankful for Liz. Thankful by a LOT.
At that point, I was taken by the waiting room where we picked up my mom. She was happy to see me. I can't imagine the fear she must have felt when a 45 minute surgery turned into an hour and a half. On second thought, that reminds me of exactly what happened during Sophie's surgery and I just apologized to mom that it took so long. She said that the doctor had come into the waiting room to tell her I made it through surgery when he was done. She said that he also told her that it was a BIG disc, and that it took quite a bit of dissection because it was really stuck in there. He said I should start to feel relief from pain over the next week and that I need to be careful not to over do it, but that I should really feel a lot better. About the time we made it into the recovery room, he came by, and told me much the same thing. I thanked him profusely for making sure things went well and how appreciative I was for his talent. The moral of this story is ALWAYS ask for a "time out" before you have surgery! You don't want them operating on the wrong part!
About the time he left, I dozed and the nurse came in to wake me up with Apple Juice and Cranberry Juice as well as some crackers. I told her that I got sick in the recovery room so she said, probably best to stick to water until I get my bearings. So, I went straight for the water. My throat was sore and I needed hydration. After downing the apple juice I asked for more water and the nurse got me up to walk around. I was impressed that I was able to pass the criteria to be able to go home very quickly. I rested for a bit, and then I was allowed to go home. Home... just where I wanted to be!
Needless to say I made it through surgery just fine and was home by about 5pm after what was another bumpy ride home... It's always comforting to arrive home when you've been dreading a procedure for years. I had contemplating doing this some time ago, but when the GI doctor said no more anti-inflammatory meds, and that I was cut off because my stomach was such a mess, and the pain started to creep in with a VENGANCE, I knew it was time to act. After two opinions from two very skilled doctors, I feel like, I got the very best care possible. I pray that the recovery goes smoothly and I am able to be the best mom to Sophie and Aiden and best mom and soon to be wife to my future husband "The Awesome Mr. P" and his family. I look forward to the quality of life I will have if this surgery was a success and I am able to recover properly. Now it's up to me to discipline myself enough to know not to bend or lift for six weeks, though I will probably be back to work in just a few weeks. I am really looking forward to that!
To my Histio Family, I will tell you, I mentioned Histiocytosis to about every nurse, nurse anesthetist, doctor and tech I could get my hands on. I encouraged them all to look it up, and even though they probably thought I was nuts, I just wanted to let them know about so maybe, if they see a case of it going forward, they won't miss it!
Thank you to all of you who have held us in your prayers. Thank you to my church, who had food delivered to us last night for last night's dinner and breakfast this morning. Thank you to my fiance, "The Awesome Mr. P" for driving three hours with his four children in tow to be here for me to help me heal. We are so humbled by this gesture and grateful that I can just focus on my getting better instead of worrying about anything. This has been pretty painful, but hopefully the pain will improve as healing begins. Now to get some sleep! Big hugs from all of us to you!
Healing prayer
Dear God,
We know that illness doesn't come from You! You are there to see us through...
We know that you are the God of comfort, guidance, peace and truth
We know that everything we do should be to glorify YOU and build each other up
When given the opportunity You call us to be an example to others by how we handle ourselves in crisis.
We know as we heal from disease or physical challenges or deal with terminal illness,
If we lean on you, O Lord, we will find comfort and peace,
We know that You are the God that has delivered people from illness and has also comforted the ones who can't be healed.
Help us to feel your omnipresence as we go through these days.
Help us to continue to lean on you and believe in you through the doubts that creep in because we are human.
You are strong, invincible and are a rock to lean on to be our refuge in times of trouble.
Help us to remember and be grateful for the Grace you sent in the form of Jesus Christ who died on the cross while we were yet sinners so that we may not have to suffer, but have eternal life with You in heaven.
(John 3:16 para)
AMEN!
Talk to you soon dear friends,
Jodi
The ride to the hospital was by far one of the longest I had EVER had. The preop instructions forbade me from taking my pain meds or eating or drinking anything past midnight. After review of the preop instructions, I also noticed something VERY disturbing. There seemed to be some debate on whether they were operating on my right or left side of the L5-S1 disc. I definitely wanted to get that cleared up ASAP!!! I thought I distinctly remembered them saying LEFT, and since that's where the majority of my pain has been, I had to make certain to clear that up. During the painful drive there (NPO after midnight, remember) I felt every bump, every jerk of the wheel, every stop light... Excruciating! The good news is that my sainted mother drove me to the hospital and stayed there for what was probably a gut wrenching day for her, and the pain I was in also quite literally drove home the need for the surgery. When we got to the check in desk, we were pointed to the preop room where I was told by the nurse there that I could have had the pain med after all! WHAT??? Ugh! I asked if I could have one to take the edge off while we waited. I was the second surgery of the day. She said yes, and that she was so sorry that the pre-op group hadn't explained this. I downed the medicine with a tiny wallow of water and started to feel a little better and had a short siesta.
Just then there was a knock on the door. It was anesthesia. A nice young woman walked in to get a brief history on me and before she could start her spiel, I said, "There's one big question mark here. Is it Left or Right???" She assured me with a blank stare, that I would have a chance to talk to the Neurosurgeon BEFORE I was cut on, so I listened to her. She was a bit perplexed herself and I did notice her looking through the file where she saw that the word "right" had been written repeatedly. She told me that she just did the anesthesia side, but would voice my concern. I felt a bit like a child getting a pat on the head at that point... Could someone PLEASE answer this question?? Ugh
The transport team walked in as anesthesia was wrapping up, and said, "They're ready for you!", to which I said, "nobody's cutting on me without knowing what side... MMMkay!!!???" Just about that time, the doctor rounded the corner and said, "I know you", trying to be clever. I said, "Good to see you, Doc, could you PLEASE tell me what side you're cutting on? There seems to be some confusion on the paperwork!". He then pulled out an index card that said, "Morgan, L5-S1, Left", and showed it to me. He then asked, "what side is the pain on?" and I said "BOTH". He then said, "Well if the pain is on both, doing a discectomy on the left only won't help much, will it? What did the consent say that you singed?" I replied, "I thought it said Right" but then I explained that I thought that the resident that was with him that day I came for my office visit said Left Side L5-S1! " He then directed the transport staff to wheel me back into the room to wait some more. He said that he would get to the bottom of it. He was IRRITATED at the nursing staff that hadn't properly prepared the forms. He told us he would go prepare new forms and would go look closer at the MRI. Upon his return, he said, it's definitely a LEFT L5-S1 herniation, and it's a BIG DISC," and he went further to explain that it was large enough and could very well be causing the bilateral pain I've been having. He then took hid sharpie out and marked on my skin where he would operate.
So, new consents were hastily signed and they rolled me in to get the IV installed and I was sure we were almost there. Someone asked, "is 10 ready?" and they yelled yes and pushed me down through Dunn Tower OR to room 3. I saw all the docs and nurses lining the halls and exclaimed, "Are we having fun yet?" just another day at the office for them, One of the British doctors looked down and said, "Good luck, and thanks for asking". The transport team stopped me in the hall in front of OR3. A nice young nurse came in and said, "I'm a nurse anesthetist that has a cocktail that makes you relax"... We got to talking about the anesthesia (I guess I get talky when I am on the medicine. I thought, "Relaxing Is good at this point", and I pleaded with her to put me WAY under and we both laughed. I could tell that this wasn't her first rodeo. They wheeled me into the OR, and then the anesthesiologist came in and put a mask over my nose and mouth. She said that it was just oxygen and told me to think of happy things to think about, so naturally I started thinking about Adam and our upcoming nuptials. As I looked around I noticed the neat stereo equipment and TV set up in the OR. Pandora Radio - fully wired. Adam had told me how they listened to Pandora in the OR at Scott & White, but this set-up was neat. It almost made me want to be awake so I could rock out with them. Nah, not quite....
So the next thing I remember, I am waking up in ACUTE pain in recovery. I started crying and gasping for air and was trying to say, "Help me", but no one could hear me because my voice was so hoarse. I looked around and couldn't see a nurse or anything much because my eyes felt like they were glued shut. I finally got them opened, and tears ran down my face. I finally saw a nurse, who said that everything was going to be okay as she pushed some pain meds through my IV. At that point, I got really sick and was glad she was right there at that point. Her name was Liz. She kept saying, "It's okay honey, deep breaths", and told me to think of family... friends... things I like to do for fun... I quickly came around and she gave me something for nausea. I felt so much better. My first question for the nurse, besides "Help me?" was "How long did he actually operate?" and she said an hour and a half. TWICE the time he told us that it would take in the pre-op area. I wondered what went wrong and she said that she would look into it and either she would let me know or the doctor would.
At this point, I am sure I was talking Liz's ear off. I told her about the C-section recovery nurse, Shannon that had been such a wonderful comfort during the moments after Aiden's birth at 30 weeks gestation. I expressed my gratitude for recovery room nurses and shared with her the story of the recovery room nurses that meant so much comfort to Sophie during her recovery from the curettage of her Histiocytosis tumor. The world greatly underestimates good nurses! Having had both yesterday, I was thankful for Liz. Thankful by a LOT.
At that point, I was taken by the waiting room where we picked up my mom. She was happy to see me. I can't imagine the fear she must have felt when a 45 minute surgery turned into an hour and a half. On second thought, that reminds me of exactly what happened during Sophie's surgery and I just apologized to mom that it took so long. She said that the doctor had come into the waiting room to tell her I made it through surgery when he was done. She said that he also told her that it was a BIG disc, and that it took quite a bit of dissection because it was really stuck in there. He said I should start to feel relief from pain over the next week and that I need to be careful not to over do it, but that I should really feel a lot better. About the time we made it into the recovery room, he came by, and told me much the same thing. I thanked him profusely for making sure things went well and how appreciative I was for his talent. The moral of this story is ALWAYS ask for a "time out" before you have surgery! You don't want them operating on the wrong part!
About the time he left, I dozed and the nurse came in to wake me up with Apple Juice and Cranberry Juice as well as some crackers. I told her that I got sick in the recovery room so she said, probably best to stick to water until I get my bearings. So, I went straight for the water. My throat was sore and I needed hydration. After downing the apple juice I asked for more water and the nurse got me up to walk around. I was impressed that I was able to pass the criteria to be able to go home very quickly. I rested for a bit, and then I was allowed to go home. Home... just where I wanted to be!
Needless to say I made it through surgery just fine and was home by about 5pm after what was another bumpy ride home... It's always comforting to arrive home when you've been dreading a procedure for years. I had contemplating doing this some time ago, but when the GI doctor said no more anti-inflammatory meds, and that I was cut off because my stomach was such a mess, and the pain started to creep in with a VENGANCE, I knew it was time to act. After two opinions from two very skilled doctors, I feel like, I got the very best care possible. I pray that the recovery goes smoothly and I am able to be the best mom to Sophie and Aiden and best mom and soon to be wife to my future husband "The Awesome Mr. P" and his family. I look forward to the quality of life I will have if this surgery was a success and I am able to recover properly. Now it's up to me to discipline myself enough to know not to bend or lift for six weeks, though I will probably be back to work in just a few weeks. I am really looking forward to that!
To my Histio Family, I will tell you, I mentioned Histiocytosis to about every nurse, nurse anesthetist, doctor and tech I could get my hands on. I encouraged them all to look it up, and even though they probably thought I was nuts, I just wanted to let them know about so maybe, if they see a case of it going forward, they won't miss it!
Thank you to all of you who have held us in your prayers. Thank you to my church, who had food delivered to us last night for last night's dinner and breakfast this morning. Thank you to my fiance, "The Awesome Mr. P" for driving three hours with his four children in tow to be here for me to help me heal. We are so humbled by this gesture and grateful that I can just focus on my getting better instead of worrying about anything. This has been pretty painful, but hopefully the pain will improve as healing begins. Now to get some sleep! Big hugs from all of us to you!
Healing prayer
Dear God,
We know that illness doesn't come from You! You are there to see us through...
We know that you are the God of comfort, guidance, peace and truth
We know that everything we do should be to glorify YOU and build each other up
When given the opportunity You call us to be an example to others by how we handle ourselves in crisis.
We know as we heal from disease or physical challenges or deal with terminal illness,
If we lean on you, O Lord, we will find comfort and peace,
We know that You are the God that has delivered people from illness and has also comforted the ones who can't be healed.
Help us to feel your omnipresence as we go through these days.
Help us to continue to lean on you and believe in you through the doubts that creep in because we are human.
You are strong, invincible and are a rock to lean on to be our refuge in times of trouble.
Help us to remember and be grateful for the Grace you sent in the form of Jesus Christ who died on the cross while we were yet sinners so that we may not have to suffer, but have eternal life with You in heaven.
(John 3:16 para)
AMEN!
Talk to you soon dear friends,
Jodi
Thursday, July 7, 2011
Mid-Summer Update…
This time of the year (where Sophie’s with her dad) is hard on me. I will admit it. I miss her every day and feel like a part of me is missing. Luckily, she and I have been able to Skype with Aiden there and he’s gotten all giggly with her on the line. Also, she got to stay overnight last Friday before she went back down to see her grandparents and cousins for the second part of her dad’s time with her. On another positive note, I have been distracted by many things like work, wedding planning and hanging out with my li’l man. So, life is really good. And, for the moment, to my surprise, the kids have both been… wait for it… HEALTHY! I thank God daily for that.
I have been able to spend a lot of time with my fiancé over the first part of this summer, which has been incredible. Being with him more often confirms our decision to marry and being around he and his four gorgeous children delights my heart and makes me look forward to the future in a LOT of ways. I can’t wait for our wedding next summer and the fun events that will surround our event. I can’t even begin to tell you how I am looking forward to being his wife. The amazing Mr. P’s WIFE! **sigh** And, mother to SIX beautiful, amazing, precious, intelligent, unique and God-filled CHILDREN! ME, who I thought might never have more than one child… and I’m going to have SIX! WOW!!!
I am going to be researching many many things over the next few months. Aside from all the wedding stuff, I am going to be researching blended families and finding out what works and what doesn’t. I am going to be asking everyone I know about how they keep track of scheduling, budgeting and organizing their homes with that many kiddos. I am completely open to your suggestions and look forward to hearing them!
Well… I guess that’s all for now! Have a great day friends!
J
Wednesday, June 15, 2011
We are SO HAPPY! Katy Magazine has published Sophie's story!!!
My daughter was diagnosed at age 9 with LCH. she lives in fear of this terrible disease every day, thou so far (luckily) it has only caused her to have one surgery to remove a tumor that had eaten through a 3cm hole in her skull. Now the doctor suspects pituitary involvement, and has ordered an MRI which will be done tomorrow. Tons of testing has been done on her, I know she feels like a pin cushion! MUCH RESEARCH is needed, and the medical community needs to be EDUCATED about Histiocytosis! To many the disease is fatal, but to us, it is terminal. She will live in fear of another flare up for the rest of her little life. PLEASE HELP however you are able!
http://www.katymagazine.com/articles/2011/summer/Katy-Texas-My-Story-Helping-Sophie-Heal-Katy-TX.pdf
My daughter was diagnosed at age 9 with LCH. she lives in fear of this terrible disease every day, thou so far (luckily) it has only caused her to have one surgery to remove a tumor that had eaten through a 3cm hole in her skull. Now the doctor suspects pituitary involvement, and has ordered an MRI which will be done tomorrow. Tons of testing has been done on her, I know she feels like a pin cushion! MUCH RESEARCH is needed, and the medical community needs to be EDUCATED about Histiocytosis! To many the disease is fatal, but to us, it is terminal. She will live in fear of another flare up for the rest of her little life. PLEASE HELP however you are able!
Tuesday, May 10, 2011
Our story
This is our story.
Sophie (picture attached) is 9 now. She's the only daughter to me, a single mom, and we have a very close relationship. She IS my heart, and I never expected to have to deal with a diagnosis like this. No mom ever does, I don't think. She was born a little bit early, but other than that has had a pretty normal and healthy life. Until last fall.
She had a weird bump come up on her scalp that we saw a dermatologist for back before thanksgiving. It would NOT go away and was growing quickly. Amid our frustration, we were told it was everything from a swollen gland due to dandruff to a Lipoma and ultimately, we were sent to a head and neck surgeon after the dermatologist attempted to biopsy it and noticed some abnormality in its content. He also said that it couldn't completely be removed in his office because it was SO deep... Early the next week she was seen by a head and neck surgeon and the surgery was scheduled.
We woke up very early (this was January, 28 2011) and went to the surgery center. Sophie was in good spirits and was put under general anesthesia for the surgery. An hour went by… the doctor said it shouldn't take more than an hour… and then an hour and a half… and the surgeon came out with her arms folded and a teary-eyed look on her face. She said that there was a tumor deep below the surface and that there was a weird "film" underlying the tumor. She said that she did two biopsies and that she sent them both off for pathology. She said that Sophie did really well and was in recovery. She also said that she'd never seen anything like this in the 20+ years of her practice.
The following week, Sophie was ill. She felt really tired and run down and we spent the Saturday after surgery at Memorial Hermann ER because she was having an allergic reaction to one of the medicines they had given her in recovery. Then, they gave her steroids and IV antibiotic and she did terrific. Her energy level went back up, so we were sent home that evening. They sent her home and Sunday she was a little better, but took a VERY long nap that afternoon. She felt terrible… So, Monday morning, I called the head and neck surgeon and we went back in to see her. She explained that this was Histiocytosis – X and it was distinctly positive on biopsy. It had eaten through the skull. She referred us to Texas Children's Cancer Center, so we got scheduled. She said that she had already notified the pediatrician and they were on the same page. When we went home the next day, Sophie continued to have symptoms, so I took her over to TCH where they did a skeletal survey to look for more lesions and told us to keep our appointment for later that week. The doctors in the ER had at least heard of Histio, but they didn't know how to treat it without calling the experts. They were very compassionate and kept Sophie comfortable but we were there ALL day. I will never forget how hot and flushed she looked…
Sophie got in to see the fine doctors at Texas Children's who are leaders in this disease. They first recommended chemotherapy and steroids for a minimum of one year. They did many scans on her, and to our surprise, there was no increase in disease in her system and the tumor that remains in her skull (the surgeon had only partially biopsied it back in January) has not continued to grow. They surprised us at her second clinic appointment by saying, still no chemo was needed. I can't tell you the relief we felt! Sophie is a best case scenario for the time being. She is being followed monthly on a "watchful waiting" program by her oncologist. We will have to go to TCH once a month for the next year, and our visits will take 1-3 days depending on the CT's, MRI's, lab work and PETScans he wants to order. Poor thing feels like a pin cushion... I pray to God every day with Sophie that the Histiocytosis (hers is the LCH variety) would just go away somehow.
So the last several months have been pretty much surprising to us in a million different ways. It's a total roller coaster of uncertainty. I wake up every day saying, Okay… What's NEXT? What does today hold? And, although we have had to adjust to a "new normal", we do realize it could be MUCH worse. I hate having to miss work, I do like my job and my coworkers have been amazing. I am desperate to find a cure, but powerless to do so. I am financially strapped because the other item that I should mention, is that I have a little boy whose been sick his entire life, and is only now starting to feel better and see some "healthy" in his life. He was born at 30 weeks and has Epilepsy, Cerebral Palsy, Kidney, Blood Pressure issues as well as Hypergammaglobulenemia of Prematurity (Immune Disorder). I am thankful that, for the most part, he's healthy, but I have often asked myself "Why HER?", and "Why THEM?", and "Why US". They're just such amazing little kiddos. Both tenderhearted, kind, innocent and sweet.
Please do what you can to help Histiocytosis research! With a cure, and better information distributed to doctors, the better off these kids and adults will be. Why support Histiocytosis over other diseases? Because right now there is NO government funding for this disease. And though most often, it's treated in Cancer/Hematology Clinics but it's not called "Cancer" because it's a hybrid disorder that is half immune disease/half cancer. And, medical students don't study Histiocytic disorders much at all because it only affects approximately 1/250,000 kids and 1/650,000 adults annually. It's called an "orphan disease" because there is so little known about it. And, families of patients can't get the help they need if they fall above the poverty line because they make "too much money" for government help, but their child doesn't have "Cancer" so they can't get private assistance either. It's a frustrating roller coaster ride and we really need people like you to step up and help.
Please do what you can to help!
I wrote this article for a friend of mine that is showing it to a member of our government next week. Please pray that it goes well.
God bless!
J
Friday, May 6, 2011
Help for Histio
Well today was one of those days. I felt terrible, but pushed through the pain. I was so grateful for my mom, who had dinner fixed for the kids when I got home around 6 o'clock, and let me eat and even helped us get started with baths and stuff. What an awesome mom I have!!! I am so blessed! I felt terrible today. The soreness they warned me about because of the amount of stuff they took out during the exam yesterday was more than evident today. I am prayerful and hopeful that I will be back to normal tomorrow. I am settling in from the day with a nice glass of wine after folding a couple of loads of laundry.
After getting an email from a Histio dad today, I got to thinking... What is stopping us from really getting help for Sophie's disease? Nothing! I want to share with you some additional information I found about Histiocytosis and the research that the doctors at Texas Children's are doing. Won't you support this? If I can save one baby's life. Just one. It will be worthwhile. I am pledging my support, whatever I can do to help the cause. I don't know what that looks like yet, but stay tuned, I will certainly be helping however I can. Kids with LCH and HLH and the related Histio disorders usually have a pretty high mortality rate if diagnosed before the age of two. There are a handfull of doctors in our country that are trying to change that. And, they already are. By working late into the night, staring at slides under a microscope day after day and performing research on how these cells act, they are changing things. One slide at a time.
This is why the "small stuff" doesn't bother me any more. I don't get my feathers ruffled too much, because I know that lives are at stake every day in our world, and by doing what I can to raise awareness, I just might be able to save one. I never thought that "one" might be one of my children, but it very well could be after receiving this live altering diagnosis. Please feel free to COMMENT if you or anyone you know has been affected with a rare disease like Histiocytosis. Please don't be shy... and know that your story matters to me too!
http://www.histio.org/atf/cf/%7B28840284-40A5-43E3-B0FF-82F1D54C440D%7D/atypical%20cellular%20disorders%20(mcclain).pdf
This article was written last night... I forgot to press "submit". Hope y'all had a great day!
Goodnight friends,
J
After getting an email from a Histio dad today, I got to thinking... What is stopping us from really getting help for Sophie's disease? Nothing! I want to share with you some additional information I found about Histiocytosis and the research that the doctors at Texas Children's are doing. Won't you support this? If I can save one baby's life. Just one. It will be worthwhile. I am pledging my support, whatever I can do to help the cause. I don't know what that looks like yet, but stay tuned, I will certainly be helping however I can. Kids with LCH and HLH and the related Histio disorders usually have a pretty high mortality rate if diagnosed before the age of two. There are a handfull of doctors in our country that are trying to change that. And, they already are. By working late into the night, staring at slides under a microscope day after day and performing research on how these cells act, they are changing things. One slide at a time.
This is why the "small stuff" doesn't bother me any more. I don't get my feathers ruffled too much, because I know that lives are at stake every day in our world, and by doing what I can to raise awareness, I just might be able to save one. I never thought that "one" might be one of my children, but it very well could be after receiving this live altering diagnosis. Please feel free to COMMENT if you or anyone you know has been affected with a rare disease like Histiocytosis. Please don't be shy... and know that your story matters to me too!
http://www.histio.org/atf/cf/%7B28840284-40A5-43E3-B0FF-82F1D54C440D%7D/atypical%20cellular%20disorders%20(mcclain).pdf
This article was written last night... I forgot to press "submit". Hope y'all had a great day!
Goodnight friends,
J
Wednesday, May 4, 2011
The verdict from today.... and my some of my favorite pics
Hey y'all! I made it through the Colonoscopy and EGD. The prep, though terrible, is not the end of the world. And, I actually encourage this sort of test if you need it. Guys, listen up, because Colon Cancer is one of the deadliest cancers out there, and early detection is key! The good news is that the doctor came out and talked to me after the test and told me he thinks I'm fine, and he doesn't think it's cancer - yay!!! There were a few areas of concern that we talked about and a few polyps that he biopsied. He doesn't think they are the cancerous kind and thinks I'm really probably going to do well after the cleaning out I had today. I know it's gross to talk about and may be way TMI for people, but if I can do this, so can YOU!
The only thing about today that I didn't anticipate was the nausea and the fatigue that I would experience after having general anesthesia. It was a long day, but I lived through it. Though I'm frustrated that I don't have an action plan attached to the report, I do know that there were some things going on that could be causing me issues, and that the doctor said sometimes when we go clean things out, people really do a lot better. I pray he's right.
We've got a very long road ahead with Aiden's and Sophie's issues. But, I am looking at the future hopefully because I know great things are looming ahead on the horizon along with the challenges that it holds. I know that everyone gets sick every now and then, and with their issues, we will just have to keep better records and keep up with things more, but we WILL make it through this.
After a VERY long day, and sleepless night, I am heading to bed. I just wanted to make sure I touched base and let y'all know that I'm okay. I didn't like the prep one bit, but the test itsself was no biggie, and can be critical in helping people find out what's going on if they have GI problems. So, fear not dear friends!
Just for fun, here are a few of my favorite shots from the last couple of months...
Dear God, Help us find out what is going on with the GI problems I have been having and take the pain away so I can be a happy healthy working mommy and support my two great kids and live the life you have gifted me with. I know you will watch over us and walk beside us on this journey and we are grateful for each day we are able to see! We love you, Lord! Amen.
Goodnight friends,
J
The only thing about today that I didn't anticipate was the nausea and the fatigue that I would experience after having general anesthesia. It was a long day, but I lived through it. Though I'm frustrated that I don't have an action plan attached to the report, I do know that there were some things going on that could be causing me issues, and that the doctor said sometimes when we go clean things out, people really do a lot better. I pray he's right.
We've got a very long road ahead with Aiden's and Sophie's issues. But, I am looking at the future hopefully because I know great things are looming ahead on the horizon along with the challenges that it holds. I know that everyone gets sick every now and then, and with their issues, we will just have to keep better records and keep up with things more, but we WILL make it through this.
After a VERY long day, and sleepless night, I am heading to bed. I just wanted to make sure I touched base and let y'all know that I'm okay. I didn't like the prep one bit, but the test itsself was no biggie, and can be critical in helping people find out what's going on if they have GI problems. So, fear not dear friends!
Just for fun, here are a few of my favorite shots from the last couple of months...
Dear God, Help us find out what is going on with the GI problems I have been having and take the pain away so I can be a happy healthy working mommy and support my two great kids and live the life you have gifted me with. I know you will watch over us and walk beside us on this journey and we are grateful for each day we are able to see! We love you, Lord! Amen.
Goodnight friends,
J
Vote, OBL and Crowns!
Please click on the following and VOTE FOR US! This is a contest that is being held by a local photographer (and dear friend), Melissa Brewer, who donated her time to come and photograph Sophie's birthday party when she found out that Sophie has Histiocytosis. We could win a family photo, but more importantly, other people will read your comments and hear about how amazing she was to donate her time!!! Please vote, ours is about 2/3 down on the right (#84)! You have to "like" snapped with love photography's page and then go to http://www.facebook.com/media/set/?set=a.101501658439432727.298301.89366308726
So you may be asking yourself, why is she up at MIDNIGHT on a Tuesday? Well, I'm having the GI tests run tomorrow and I can't sleep... So, there you have it! Say a little prayer for me, and please know that I will be unreachable for most of the day. I am praying for a result that has a plan attached to it. I'm sick of being in constant abdominal pain and sick of having crazy symptoms!
Tonight, I wwant to share with you some fun pictures of Aiden's birthday party today. I was turning six shades of green, but my mom still wanted me in the picture, so here you go...
My favorite song lately is Glorious Day by Casting Crowns. Only one man's death changed my life. It wasn't OBL!
Glorious Day (living He Loved Me) lyrics
One day when Heaven was filled with His praises
One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now is ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One bringing
My Savior Jesus is mine
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
Goodnight friends,
J
So you may be asking yourself, why is she up at MIDNIGHT on a Tuesday? Well, I'm having the GI tests run tomorrow and I can't sleep... So, there you have it! Say a little prayer for me, and please know that I will be unreachable for most of the day. I am praying for a result that has a plan attached to it. I'm sick of being in constant abdominal pain and sick of having crazy symptoms!
Tonight, I wwant to share with you some fun pictures of Aiden's birthday party today. I was turning six shades of green, but my mom still wanted me in the picture, so here you go...
Glorious Day (living He Loved Me) lyrics
One day when Heaven was filled with His praises
One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now is ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One bringing
My Savior Jesus is mine
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
Goodnight friends,
J
Sunday, April 3, 2011
Once in a lifetime!
A note to readers of this blog...
In an effort to structure the blog a little more going forward, I wanted to let you know that I will start dividing it into three types of posts. Some days there will be all three types, like today. First is the Spotlight, which will serve as a journal of what we've been up to. Secondly there will be a section for Medical Messages, which will outline medical issues, situations and concerns that I have been privy to as we walk through the illnesses with which my children have been diagnosed. Thirdly, there will be a Spiritual Sideline at the end, which will sometimes contain a prayer, Scripture or devotion that resonated in my heart while I was writing the post. Sometimes there won't be all three segments in each post. I hope this helps you be able to look through the blogs more easily depending on where you are in the audience of people who follow this blog. Thank you for stopping by and I pray that you are well and hopeful that you can "Live Life Fully Today" right along with us. Thanks again for stopping by!
Weekend Spotlight....
This was one of the best weekends we've had in a very very long time. My daughter and my son were both healthy. My incredible boyfriend, Adam, brought his kids to visit us. All four of them. Yes, that means if things progress the way we all hope, there would be a total of six children between us. SIX!!! I always wanted kids, but never in my life imagined SIX. What an amazing blessing each and every one of them are! Precious gifts from God, each one!
It was the first time we had ever all been together face-to-face. We made some great once-in-a-lifetime type memories that I will treasure and ponder for the rest of my life. I haven't been this happy about where my life is heading in a long time, and this amazing man and his family are a big huge part of why. They got here on Saturday afternoon and we grilled and had a great dinner together, got everyone bathed and put to bed and even had time to play at the park. Aiden was very overstimulated, but all in all had a wonderful time. I knew Adam was a great dad, but seeing him with all the kids together just really solidified things for me in a lot of ways.
Everyone went to bed at a reasonable hour and we (rather ambitiously I might add) got everyone together and went over to church. Afterward, we came home, got some lunch and the littlest three got their naps and the big kids played while they waited for Sophie to get home from her dads. It was so cute to see Sophie and Adam's oldest girl play together. They were inseparable from the very moment they met. They are both into horses, puppies and enjoyed playing stuffed animals together. I am so excited that the girls (and all the kids for that matter) have been raised with similar values and they were able to get along so well. As a matter of fact, all six of the children got along well. I realize that they will eventually have challenges if things progress to the next level, but for now everything went very well.
I think we're headed in the right direction. And, after six months of dating, it was time for our children to meet. It just feels right...
Medical Messages... Epilepsy
Credit goes to eftx.org for publishing the italicized information about Epilepsy.
Spiritual Sideline...
This is from Jim's sermon today... Read John 9:25 and think of what you are blind to in your life, and earnestly ask God to intervene. Ask him to open your eyes so you can see the light and let go of the sin and secrets that are permeating that one part of your life. Be fully honest with yourself and give this area over to God. I have done this exercise and it has made an amazing difference in an area of my life that I thought would just continue to tear me apart. I am by no means perfect, but am trying every day to be just a little more like Christ. Baby steps...
May the Grace and Peace of our Lord comfort you now and always... Amen
Goodnight friends,
J
In an effort to structure the blog a little more going forward, I wanted to let you know that I will start dividing it into three types of posts. Some days there will be all three types, like today. First is the Spotlight, which will serve as a journal of what we've been up to. Secondly there will be a section for Medical Messages, which will outline medical issues, situations and concerns that I have been privy to as we walk through the illnesses with which my children have been diagnosed. Thirdly, there will be a Spiritual Sideline at the end, which will sometimes contain a prayer, Scripture or devotion that resonated in my heart while I was writing the post. Sometimes there won't be all three segments in each post. I hope this helps you be able to look through the blogs more easily depending on where you are in the audience of people who follow this blog. Thank you for stopping by and I pray that you are well and hopeful that you can "Live Life Fully Today" right along with us. Thanks again for stopping by!
 |
| Sophie and Aiden |
This was one of the best weekends we've had in a very very long time. My daughter and my son were both healthy. My incredible boyfriend, Adam, brought his kids to visit us. All four of them. Yes, that means if things progress the way we all hope, there would be a total of six children between us. SIX!!! I always wanted kids, but never in my life imagined SIX. What an amazing blessing each and every one of them are! Precious gifts from God, each one!
 |
| All Six Kids!!! |
 |
| The Big Kids |
 |
| The Little Kids |
 |
| The Girls |
 |
| The Guys |
Everyone went to bed at a reasonable hour and we (rather ambitiously I might add) got everyone together and went over to church. Afterward, we came home, got some lunch and the littlest three got their naps and the big kids played while they waited for Sophie to get home from her dads. It was so cute to see Sophie and Adam's oldest girl play together. They were inseparable from the very moment they met. They are both into horses, puppies and enjoyed playing stuffed animals together. I am so excited that the girls (and all the kids for that matter) have been raised with similar values and they were able to get along so well. As a matter of fact, all six of the children got along well. I realize that they will eventually have challenges if things progress to the next level, but for now everything went very well.
I think we're headed in the right direction. And, after six months of dating, it was time for our children to meet. It just feels right...
 |
| Adam and I as we were going into church this morning. |
What is Epilepsy?
Epilepsy is a neurological condition caused by sudden brief changes in the brain's electrical balance. When there are excess electrical discharges in the brain, seizures occur. Seizures can alter awareness, physical movements, consciousness or actions. Seizures generally last from a few seconds to a few minutes.
Epilepsy is often called a "seizure disorder." Both terms are used to describe recurring seizures.
Epilepsy is not a disease, mental illness or a sign of low intelligence. It is not contagious. Epilepsy is generally a chronic and/or lifelong condition.
When epilepsy develops
A person could have a seizure at any time during his or her life. In fact, it is estimated that 1 in 10 people will have a seizure during his or her life time. Approximately 1 in 2 percent of the population has epilepsy/seizure disorders. About one-third of the 186,000 cases diagnosed each year occur in childhood. However, senior citizens are increasingly diagnosed with epilepsy/seizure disorders.
A person could have a seizure at any time during his or her life. In fact, it is estimated that 1 in 10 people will have a seizure during his or her life time. Approximately 1 in 2 percent of the population has epilepsy/seizure disorders. About one-third of the 186,000 cases diagnosed each year occur in childhood. However, senior citizens are increasingly diagnosed with epilepsy/seizure disorders.
Treatment
The most common treatment for epilepsy/seizure disorders is anti epileptic medications. Many people with epilepsy are able to control their seizures with medications. However, the side effects of medications can be severe, and some people with epilepsy do not respond well to medications and have little or no control of seizures. In some individuals, surgery can also be used to treat epilepsy/seizures disorders.
The most common treatment for epilepsy/seizure disorders is anti epileptic medications. Many people with epilepsy are able to control their seizures with medications. However, the side effects of medications can be severe, and some people with epilepsy do not respond well to medications and have little or no control of seizures. In some individuals, surgery can also be used to treat epilepsy/seizures disorders.
Aiden's Case...
In Aiden's case specifically, we first noticed seizures during a series of viral and bacterial illnesses that he had when he was just over one year-old last summer. He was sick over and over and we thought he was having febrile seizures, but the seizures became more and more chronic and frequent and were not always coincidental with fever, and there were major developmental delays (gross and fine motor). His temps got over 103 a few times (once over 104.7) and after spending a lot of time back and forth to doctors, and finally finding a great neurologist, he was diagnosed with Epilepsy and Cerebral Palsy. We also got to the bottom of why he kept getting sick by doing a series of tests with an Allergy/Immunology specialist who diagnosed the Hypogammaglobulenemia of Prematurity, that he will HOPEFULLY outgrow as his system catches up with his prematurity. He was born at 30.5 weeks (see earlier posts). Aiden is now on an anti-epileptic medicine called Keppra. He takes it twice a day. It's VERY sensitive, and the dosing and scheduling of the medicine is extremely important. I don't know that I've forgotten a dose the entire time he's been on the medicine because when Aiden has a seizure, as a mom, it scares me half to death. You feel completely powerless, and though the neurologist assured us that the seizures would likely not harm Aiden long-term unless they last longer than 5 minutes, they can be extremely scary. I have a few more gray hairs than I did this time last year. Aiden also now has an emergency medicine that is pre-dosed and is dispensed in the even that he has a seizure that lasts longer than two minutes. He has had a few lengthy seizures, the longest lasting over 15 minutes, hence the Neurologist giving him the new medicine to help prevent any long-term damage. Epilepsy is a slippery slope, especially with a quickly growing boy, we constantly have to monitor his medicine and make sure that his dosing is adapted for his growth. Thankfully for us, Aiden has received physical and occupational therapy for his motor delays and is developing very nicely now given his diagnoses.
Credit goes to eftx.org for publishing the italicized information about Epilepsy.
Spiritual Sideline...
This is from Jim's sermon today... Read John 9:25 and think of what you are blind to in your life, and earnestly ask God to intervene. Ask him to open your eyes so you can see the light and let go of the sin and secrets that are permeating that one part of your life. Be fully honest with yourself and give this area over to God. I have done this exercise and it has made an amazing difference in an area of my life that I thought would just continue to tear me apart. I am by no means perfect, but am trying every day to be just a little more like Christ. Baby steps...
May the Grace and Peace of our Lord comfort you now and always... Amen
Goodnight friends,
J
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