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Showing posts with label Epilepsy. Show all posts
Showing posts with label Epilepsy. Show all posts

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

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...
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


Thursday, September 29, 2011

BREAKING NEWS...

Well we got some really great news yesterday. Sophie’s art has been chosen by her art teacher to be part of the display in the district’s current Administration office display. The artwork was chosen from artwork by students from students in Kindergarten – twelfth grade from selections throughout the forty-five campuses in our district. I am so proud. I don’t even know which piece of hers was chosen, and I can’t wait to see the display! I will most certainly post pictures as soon as they are available.

 

Ahhh… Back to school. Nothing like being back to school… The movie “You’ve got Mail” affectionately discusses back to school’s essence as “Don't you love New York in the fall? It makes me wanna buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address.” The affection is somehow lost on us… For us, back to school really means that the cesspool of germs and viruses is running rampant through the halls. Sneezy, Viral, Snotty Mucus-riddled children wiping their noses and then slobbering down a water fountain just really makes me wish I could wrap both my kids in bubble wrap before send them off… But then again, the ridicule that would be directed their way would be unparalleled and I would rather save them both the horror of that humiliation. Unfortunately, in our case, that’s how we look at things. It’s not the most ideal thing in the world as far as my children are concerned. With Sophie suffering with Histiocytosis and now Mononucleosis, and Aiden having Epilepsy and Hypergammaglobulenemia, it makes for an interesting season to say the least. Both kids have missed a lot of school thus far. The first two weeks of school it was a bad stomach bug. Included vomiting and diarrhea and temperatures and we all passed it around. Aiden and Sophie both had to go to the ER with that one, but for different reasons. Aiden because he was absolutely dehydrated. He had to receive IV fluids because he couldn’t eat or drink ANYTHING without throwing up which also meant he couldn’t get his seizure medicine, so we HAD to get him well enough to take his meds. I am hopeful that as their immune systems get stronger, they will both see a break in all the viral illnesses. Sophie’s was different. She presented last Saturday with chest tightness and dizziness. So, I automatically assumed she was having a Histio relapse, but she wasn’t thank God. She tossed her cookies as we were sitting in the ER waiting after triage had seen her and moved her to the front of the line. It’s not good to have a kid with an illness that gets moved to the front of the line… but both of mine do. When you walk into the ER and tell them your kid has tightness in her chest and dizziness and she’s got Histiocytosis and is treated at Texas Children’s Cancer Center, you’d be surprised how quickly they push you to the head of the line. Unfortunately, I have spent WAY too much money this year on copays, prescriptions and coinsurance amounts. We are totally just spent…

 

I am hopeful that this year will turn around and that next year will be better as far as medical expenses go. It could be so much worse, and I am thankful for all we DO have. I am blessed beyond measure…

 

Have a great day 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!








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!
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.
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
 

Tuesday, June 28, 2011

Surgery and SKYPE ROCKS!!!

The last few days have been hard. There's no other way to put it. I went to the orthopaedist to get my MRI results yesterday, which was something that I have been dreading. I would much rather have my teeth drilled, get up and speak in front of thousands and sing karaoke with a cold than get the results of the MRI. Frankly, I knew what they were going to say. I knew he was going to tell me I had a badly herniated disc and that I needed surgery. My fiance had already looked at the MRI films, as had I, and we had been able to see clearly that there was a bad herniation and a degeneration in another disc that isn't far behind the ruptured one. I have been in a lot of pain, but have put it off for months because of the kids' problems.

And, well, I just don't like the idea of having to have surgery... but after the GI doc told me I can't be on anti-inflammatory meds anymore because they're tearing up my stomach, well something had to give. A few weeks ago, when I threw my back out as we were going in for Sophie's MRI, I knew I needed to do something. So, I got into the room and heard the doctor's squeaky tennis shoes creeping closer to my door. He put his little rubber hammer down, and said, "Let's just talk..." I said, "What did it say?" He tactfully tried to lay out my options, but explained that he knew what I would probably want to do. He said that epidural injections and PT may buy us a little time, but that surgery was going to give me quality of life and prevent nerve damage. I am scared to death at this point. So, he talks a little more and all I can hear is "Wah wah wah (think Charlie Brown's mom here)" and I am led by the Yale educated doctor out to the screen where he shows me my MRI pictures in more detail. He says, "here's the herniation, and here's where it's pushing the nerves that control your left leg, and your right" All I could do was choke back tears as I walked back to the exam room. I said that I needed to know what kind of recovery was involved in something like this. He explained, and I probably heard half of what he said. He gave me a pamphlet and then said to think it through and to let him know, but encouraged me to get on his schedule because he only does surgery one day a week. I thanked him and a nice young lady walked in and had me go out into the waiting area. A thought cloud formed above my head.... "Surgery??... Sigh... Don't they know my daughter has LCH and my son has Epilepsy and CP? Don't they know I have a friggin' nough on my plate without THIS?" I started to text my family and then got called back to get on the schedule. I talked to my family and friends and am definitely getting a second opinion. Please say a little prayer for me. I would be grateful!

Well something absolutely wonderful happened tonight. I got to talk to Sophie with Aiden in my lap while she was in South Padre Island visiting the other side of her family. Though some people may not think this kind of technology is amazing, for us it absolutely was.

See, I have only been using Skype for a few months. And, well Sophie was just diagnosed with LCH in January, so having her gone this summer has been a gut wrenching time to say the very least. I also was absolutely amazed to see the two kiddos interacting. And, as a bonus, Aiden initiated a lot of their interactions, from "fist bumps" to "high-bye" (aka. high-fives) as well as blowing kisses over the computer. To me, with his developmental issues, and yearning to see her sweet face again after all we've been through this year, this absolutely and 110% MADE MY DAY. Sophie's dad and I may not always get along, but he and his mom get major brownie points for facilitating this interaction. Thank you.

My thought for a Tuesday... Tonight I want to pray for all the parents out there. I want to pray that God come between you and your ex and/or current spouse and intervene in a way that is positive for the children. May you always remember that there are precious little hearts and minds at stake in every parental situation and may you be blessed in knowing that you have the power to enrich them. May every day you be granted peace in knowing that you made the best choices possible with the day you have. Today is all we have, people. You can plan for tomorrow, but LIVE LIFE FULLY TODAY.

Dear God,

May we find peace in knowing YOU more. May we share you with our children through our example so that our children will see the love you first gave to us through your Son, Jesus Christ. And tonight, may we remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." God, we try to make the best decisions for our children and ourselves TODAY. And, in spite of our mistakes, you remind us continually that you've got us covered for tomorrow without us having to do anything to earn it. God, help us to have peace in knowing that you've got our back, and that you will give us the stamina to push through another day and live it fully through your strength and love.

Amen.

Goodnight friends,
J

Friday, May 13, 2011

For Aiden: Epilepsy Info, IVH Information, and a Preemie Prayer!


What is epilepsy?
Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person's consciousness, bodily movements or sensations for a short time.
These physical changes are called epileptic seizures. That is why epilepsy is sometimes called a seizure disorder. The unusual bursts of energy may occur in just one area of the brain (partial seizures), or may affect nerve cells throughout the brain (generalized seizures). Normal brain function cannot return until the electrical bursts subside. Conditions in the brain that produce these episodes may have been present since birth, or they may develop later in life due to injury, infections, structural abnormalities in the brain, exposure to toxic agents, or for reasons that are still not well understood. Many illnesses or severe injuries can affect the brain enough to produce a single seizure. When seizures continue to occur for unknown reasons or because of an underlying problem that cannot be corrected, the condition is known as epilepsy. Epilepsy affects people of all ages, all nations, and all races. Epilepsy can also occur in animals, including dogs, cats, rabbits, and mice.
What is the difference between seizures and epilepsy?
Seizures are a symptom of epilepsy. Epilepsy is the underlying tendency of the brain to produce sudden bursts of electrical energy that disrupt other brain functions. Having a single seizure does not necessarily mean a person has epilepsy. High fever, severe head injury, lack of oxygen -- a number of factors can affect the brain enough to cause a single seizure. Epilepsy, on the other hand, is an underlying condition (or permanent brain injury) that affects the delicate systems which govern how electrical energy behaves in the brain, making it susceptible to recurring seizures.
Which doctors treat epilepsy?
Neurologists, pediatric neurologists, pediatricians, neurosurgeons, internists and family physicians all provide treatment for epilepsy. Specialized care for people whose seizures are difficult to control is available in large medical centers, neurological clinics at university and other hospitals, and from neurological specialists in private practice.
Is epilepsy ever contagious?
No, epilepsy is never contagious. You cannot catch epilepsy from someone else and nobody can catch it from you.
What should I consider if there has been only a single seizure?
When a child or adult has never had a seizure before, the first seizure is usually followed by a careful medical evaluation to help the doctor decide whether to recommend treatment with seizure-preventing drugs, or to wait and see whether it occurs again. The most important factor in deciding whether to begin drug treatment for a single seizure is the probability of further seizures. Physicians use both diagnostic tests and careful evaluation of the seizure itself to determine how likely it is that the patient may have more seizures in the future. Age, family history, and possible causes of the seizure are among the factors that are considered. Non-medical issues, such as loss of driver's license or worries about impact on employment, may also enter into the decision. In many cases, the doctor will recommend waiting to see if another seizure occurs before beginning treatment.


What causes epilepsy?
In about seven out of ten people with epilepsy, no cause can be found. Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works. For example, head injuries or lack of oxygen during birth may damage the delicate electrical system in the brain. Other causes include brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, problems in development of the brain before birth, and infections like meningitis or encephalitis. Epilepsy is often thought of as a condition of childhood, but it can develop at any time of life. About 30 percent of the 125,000 new cases every year begin in childhood, particularly in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65.
What should I do if I suspect a seizure disorder?
If you think you or a loved one might be having seizures, it is important to discuss with your physician what has been happening. Keep a record of how often the unusual episode occurs, the time of day it happens and what form it takes. Giving the doctor this information will help him or her determine if what you are describing might be a type of epilepsy. (http://www.epilepsyfoundation.org/)



IVH is described here: In infants (Wikipedia Article, that actually is quite good)
This type of hemorrhage is particularly common in infants, especially premature infants or those of very low birth weight.[2] The cause of IVH in premature infants, unlike that in older infants, children or adults, is rarely due to trauma. Instead it is thought to result from changes in perfusion of the delicate cellular structures that are present in the growing brain, augmented by the immaturity of the cerebral circulatory system, which is especially vulnerable to hypoxic ischemic encephalopathy. The lack of blood flow results in cell death and subsequent breakdown of the blood vessel walls, leading to bleeding. While this bleeding can result in further injury, it is itself a marker for injury that has already occurred. Most intraventricular hemorrhages occur in the first 72 hours after birth.[2] The risk is increased with use of extracorporeal membrane oxygenation in preterm infants.[3]
The amount of bleeding varies. IVH is often described in four grades:
  • Grade I - bleeding occurs just in the germinal matrix.
  • Grade II - bleeding also occurs inside the ventricles.
  • Grade III - ventricles are enlarged by the blood. (ßAiden’s Grade)
  • Grade IV - there is bleeding into the brain tissues around the ventricles.
Grades I and II are most common, and often there are no further complications. Grades III and IV are the most serious and may result in long-term brain injury to the infant. After a grade III or IV IVH, blood clots may form which can block the flow of cerebrospinal fluid, leading to increased fluid in the brain (hydrocephalus).
There has been various therapies employed into preventing the high rates of morbidity and mortality, including diuretic therapy [4], repeated lumbar puncture [5], streptokinase therapy [6] and most recently combination a novel intervention DRIFT (drainage, irrigation and fibrinolytic therapy). DRIFT has been tested in an international randomised clinical trial, although it did not significantly lower the need for shunt surgery, severe cognitive disability at 2 years Bayley (MDI <55) was significantly reduced [7]. Repeated Lumbar punctures is used widely to reduce the effects in increased intracranial pressure and an alternative to ventriculo-shunt (VP) surgery that cannot be preformed incase of intraventricular haemorrhage. The relative risk of repeated lumbar puncture is close to 1.0 therefore it is not statistically when compared to conservative management and does raise the risk of subsequent CSF infection [8].


A Premature Baby's Prayer

God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him. He has been taken
from my womb without warning and I long to hold him
in my arms.

Lord, I ask in your name that my child be healed.
I am willing to accept your decision no matter what
it will be. I am willing to take on the responsibilities
for caring for this child. I am willing to give this
child love and understanding no matter the cost.

Please Lord help me to accept reality and what has
happened without explanation or warning. Help me
face the fact that this is not my fault and that
I was given a special task to complete here on Earth.

God give my child the strength to make it through another
second, minute, hour and day as each moment is
a blessing and a triumph from heaven.

God, may you give the strength and compassion
to the caregivers and nurses that take care of my child
May you keep my child protected and free from all injury
and pain.

Please take away the guilt and burden from my heart dear
Lord. It is heavy and I feel it is all my fault.
Take it away dear Lord. Sweet Jesus allow me the strength
and understanding I need to communicate with the Doctors
and Nurses.

As you see dear Lord, I am at your mercy for the life of
my child. Please leave him here on Earth and know that
I will provide all the love and understanding that
this child needs. I accept the challenge and will be
your humble servant dear Lord.

~Author unknown~


Good night friends,
J


Thursday, May 12, 2011

Three Simple Reasons...

Well we spent all night in the ER with Aiden with Seizures, Panting and Roller Coaster Fever (100 – 103 degrees). He’s got a viral illness of some sort (they don’t suspect Meningitis, thank God). He’s home resting now, but just wanted to ask for your prayers that he gets better, and quickly. Every time he runs a high fever, or has a viral illness, his threshold for seizures is decreased and therefore the seizures commence. He had three seizures, and thankfully they all decreased in severity due to the meds on board, but it’s just a lot… Epilepsy sucks!



Sophie goes back to TXCCC on Monday for evaluation by the Oncologist for her monthly check-up. Thankfully, she is doing well right now.

Please don't misunderstand my blog/facebook posts about my family. It's by no means intended to be some sort of pity party on my part. I get up and plug away at work every day I can possibly go and work hard because I enjoy the company I have the priveledge to work for. I blog for three reasons (1) to update family and friends without re-living the sometimes painful experiences of mothering two kids with ongoing medical issues, (2) to let people know what we're going through so that maybe they can share our experiences and testimony of God's enduring love, and (3) as a personal outlet to get things off my chest. If you don't like what you read, or don't want to know, please, with all due respect, don't read. I am not looking for sympathy, but rather to help you grow in your walk, closer to us as friends or inspire you to do something great for someone else. I hear Histiocytosis Research needs some "great" helpers (http://www.txccc.org/content.cfm?content_id=928). Just sayin'....

Also, unfortunately, I know that some of you are hopeful that my children will be fully healed. Though I think this is a very real possibility, the doctors have told us that Histiocytosis (Sophie) and Epilepsy (Aiden), in the forms that they suffer from, are very unlikely to just go away. Sophie may go into remission, but we will always be wondering if it will come back, and she will have to live with Histiocytosis for the rest of her life. It's the reality of it. Additionally, Aiden's epilepsy will likely be a life long struggle for him. It's unfortunate, but I've come to grips with this reality. This is our "new normal". I'm not saying I like it, but I also know it's best to be somewhat of a realist so you're prepared for the worst, yet expecting the best. I am VERY hopeful, but also realistic.

We are so humbled by grateful for those of you who love on us, pray for us and think about us. It's your prayers and kind thoughts that keep us going.

Also know, that though the weight of what we're going through is heavy, I don't discount that everyone is going through something, and by no means think our issues are more important than any one else's. God will see us all through our struggles, even if the outcome isn't always what we'd hoped for. Every day I wake up, get dressed and look in the mirror and know that the heart of the person staring back at me isn't the same as the person I was a few years back, and for that I am truly thankful to God. I know He has prepared me and strengthened me to adequately parent these little angels and be right where I am today, even if that means another trip to the ER or TXCCC.

Dear God,

Help me to hear your word, and to continue to see you working in my life every day. Because I know:

“For with God nothing will be impossible.” (Luke 1:37)

But He said, “The things which are impossible with men are possible with God.” (Luke 18:27)

“Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” (Ephesians 3:20)

Amen,


Have a good day, friends,
J

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


Tuesday, April 26, 2011

Today's Excitement

Me and Adam on Easter
Me, Sophie, Adam and Aiden
Aiden, Me & Sophie. Fun times at Easter!
Today is full of excitement for us once again.

My dad is going to the cardiologist, so please pray for him as he looks at the potential for more testing. He’s been having symptoms and was in the hospital for three days last week going through tests. I just want him to be better. He’s too young for this.

Also, Sophie was home from school yesterday with severe back pain. She’s going through more testing on May the 16th at the Cancer Center, but had to go endure another “it’s nothing, just take ibuprophen” visit with the pediatrician. We love Sophie’s pediatrician, but it’s hard when we know the LCH could be at work in her, and probably is just searching her little body for weak spots to attack. Depressing, but we will push through. And, I’m doing everything in my power to distract Sophie from the pain and discomfort by keeping her busy. She has swimming lessons today and also has TAKS tests today and tomorrow at school which will most likely wear her out. She was SO tired when I laid her down on her pillow last night  that she went right to sleep. She came into my bed in the middle of the night again though, so I didn’t sleep too well. Occupational hazard of motherhood, I guess…

Just as a reminder to all of you out there, there is a Histiocytosis web page at www.histio.org and I am going to hopefully start volunteering with them soon. There is also a Histio eStore out there where you can buy fun little items and the proceeds go to benefit Histiocytosis research!

Aiden will be TWO next week. It’s hard to imagine that it’s been two years since my precious little man landed on the scene. He’s been such a blessing to us and even with the immune disorder, the Epilepsy and Cerebral Palsy, I think it’s amazing how far he’s come in such a small amount of time. The kids are such a miracle.


This weekend, we had an amazing time with Adam and my folks. We went down to Bay City on Saturday and spent Sunday with them as well. Though the trip was too short, it was good to go and see everyone at St. Paul’s UMC and be a part of the service. Sophie was the most precious acolyte and Aiden helped carry the Easter lilies down to the communion rail in the front of the church. It’s a tradition for the little ones to carry the lilies down to the front. It was so cute to see a parade of little munchkins carrying their Easter lilies down. Some of them weren’t any bigger than their plant.

May the God of Easter be with you again as you walk through today… He has risen from the grave and dwells among us until the ascension. Cherish His presence this Easter season, my friends! To God be the glory, Amen.