What the???

Okay… Here's an update on everyone…

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

 

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

We are SO HAPPY! Katy Magazine has published Sophie's story!!!

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!

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].

http://en.wikipedia.org/wiki/Intraventricular_hemorrhage for the full article.

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

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

Miracles, Memories and a Birthday!

As many of you already know I have been struggling with GI problems since mid-February. I am finally going to go have some tests run on Wednesday. After four ER visits and countless specialists, I did go to a great GI doctor last week and a wonderful urology specialist today that should help me get to the bottom of the pain I have been having. Please pray that we get some answers, this is getting really old.

As for the kids, they are both doing well. Sophie continues to plug away at school. She maintaines an A/B average in spite of having to miss a few days every month for various Histiocytosis screenings and tests. Her attitude is remarkable and her resolve is amazing. I wish I was as strong as she is. She is my hero.

All dolled up for Easter, you'd never know anything was wrong with Sophie. Thank God they're saying that she may go into remission. I pray to God every night with Sophie that Hisitocytosis would just GO AWAY!

Aiden is doing incredibly well. He runs and climbs all over the place just like a normal 23 month old. And, guess what? His birthday is tomorrow! He's grown into such a beautiful boy and has a hilarious personality. I am looking forward to many, many more birthdays to come! I love you, my big and strong boy!

At 30.5 weeks gestation, Aiden struggled through Premature Lung Disease and a Level III IVH while in the NICU. He was so beautiful to all of us. I could see through the tubes and wires to his precious blue eyes, and I knew he knew me.

Looking at that smile, you'd never know that he was early. Thank you to the doctors and staff at Women's Hospital that saved my son's life almost two years ago today. You're a blessing from God to us moms and we thank you!

Tonight, I leave you with this. Miracles happen every day. Take time to look at your life and see the miracles God has already worked in you and those around you. God has worked two very clear miracles in my life, and I know he will see us through this too.

If God can bring you to it, He can see you through it!

God, I know you don't make people sick, but rather give us the strength to make it through one day at a time. Amen

Goodnight friends,
J

I'm RICH!!!

And we wait... for EEG results for Aiden and for Sophie's next round of scans. In the mean time, I am searching for ways to laugh more, savor more live more richly than ever before. And, I'm not talking about money. I am talking about living a rich life!!!

Today I was taken to lunch by a few women I really admire. We celebrated a birthday, we shared about our heritage, our children and ate excellent food. I was deeply touched by the love each of them has for their children. I think all moms who truly love their children are a gift like no other. I learned from my mom, who was a great role model, and still is. I know she gets tired and needs a break from us, but I appreciate and see her in each of these women I had lunch with. The mothers with grown children who are trying to help them be better adults. The woman with pre-teen children who worries about missing a homerun or other milestone. I can relate. Though my concerns are medical, I think the fact that we all four had that in common was really neat.

I trimmed Sophie's hair tonight and we laughed over and over about just silly stuff that nobody else would understand. I am so proud of the woman she's becoming. I don't want to hear bad news in her future, and I know God is watching over us, but if we do, I will know... know in my heart that I have loved her, cherished her and laughed and appreciated her enough. I try every day to love her more, appreciate the little things she does. Like watching American Idol and listening to her talk about how she could do what those kids do. She then asked what I want her to be when she grows up. A very philisophical question for a nine year-old. I told her I want her to be whatever makes her truly happy. She said, "No mom, what did YOU want me to be when I was a baby", and then I told her how she always sang and cooed so well that I wouldn't mind it if she sang for a living. She cracked up laughing, and said, "I knew you would say that"... We both had a good laugh... she laughs and my heart smiles.

Me and Sophie at her 9th birthday party a few weeks back.

This picture makes me want to cry. So sweet of my mom and Aiden.

Today was Aiden's EEG. Mom had to take him, but she said Elmo saved the day. She put that in the DVD player in the room, sat him down, and before he could see the machine, he said, "Head", like he just knew. Part of that makes me deeply sad, but another part is thankful that he now knows what to expect when he goes into have the EEG's. Mom dropped him by my office on their way home tonight. It was so great to see his little face when he saw me when he was getting off the elevator on my floor.... He smiled SO big! He grabbed me and kept putting his head down on my shoulder, it was so sweet. My mom walked into the office, and then I told her to go ahead and go, because she was tired. It was quite an ordeal to hold a two year-old down while he has a million little leads placed on his head. God I hope it's normal! He was so cute in my office. He got into my co-worker's leather chair (with a little help) and kept sliding down and giggling. It was cute, even if he was a little loud. Aiden was so tired tonight, he didn't eat much dinner. He drank his milk, and wanted to run around the living room. That is, until he's too tired. Then, he goes into his room, grabs his blankets (sometimes more than he can carry) and says, "Nigh Nigh?" and walks back toward his room. He's such a good baby. I turned up the baby monitor tonight so I can hear him breathe. I know it's weird, but every time he has a test like that, even if I can't be there, I go back to him in the NICU. And, I pray earnestly that he keeps healing and developing normally. God and some great doctors, and I do think he will. He's come so far already.

See.... :)

The same Lion is used in both pictures. Puts it into perspective how small he was at 3lbs 11.8oz.

Aiden at 22 months. 30 pounds of happy!

On some days, I don't know how I get out of bed. I just want to crawl back into my clean white sheets and hide. But, when I think of these two sweet faces, and how far they've already come, I know I can face another day. I like my job, my family and friends are amazing (yes, that includes you). I am living a rich life, just full of blessings. I am overwhelmed by God's grace, though I know he loves me through my iniquities. I know he's MORE. He's MORE than I need. He'll provide MORE than I need, and more than THEY need. He's going to see us through this, and I know my worry is normal, but it still hurts. I'm not going to lie about it. It just does.

Histio sucks, Epilepsy sucks, Cerebral Palsy sucks, and Hypergammaglobulunemia of prematurity sucks! But, God doesn't promise us that life won't suck. His promise is that it might be bearable with his help, if we let him walk beside us through our trials. And, on another note, Matthew 9:21 says, "She said to herself, "If I only touch his cloak I will be healed."" I know in my heart that God is the great healer, and that through Jesus, healing is very very possible.

I am RICH!!!!

Goodnight friends,
J

A whirlwind of ups and downs...

Today was a veritable roller coaster of emotions. From the highs of finding out that Sophie's blood work was normal (YAY!) to the low of realizing that this is still an extremly unfair diagnosis for any child, I spent my day working and trying to catch up for some of the things I had missed while I was gone. And quite frankly, I spent a little time feeling sorry for myself on the way to work this morning. I don't think that kind of emotion is useful, but hey, it happens and I was reflecting on the past three years as a whole. Granted there are some major bright spots, but also some very sad moments as well.

Some of you know, but some of you don't know the story of my son's birth. Here is a post I wrote about his birth and as a thank you to all of you who have prayed us on along the way... I enjoyed re-reading this as I was feeling sorry for myself and quickly realized that God CAN work miracles!!!

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Aiden’s Birth Story, May 3, 2009
Jodi Morgan, written by Aiden & Sophie’s Mom
Aiden Bradley Morgan was born on Sunday night, May 3, 2009 at 6:53pm. He was 30.5 weeks along and was 3lbs 11.8ounces and 16 1/2 inches long. 

Hours after Aiden was born... What a trooper!

It was a Sunday morning like any other for a woman on bed rest. I had been ordered to “strict bed rest” after pre-term contractions had hospitalized me three times. On this particular Sunday, I woke up, got cleaned up, and watched what I like to call "TV Church" which consists of watching the worship service with St. Lukes' senior pastor and friend of ours, Dr. Tom Pace (on May 3, Justin preached), and First UMC's Steve Wende who preaches shortly after Tom on another channel. [My mom had been staying with us for some time now and was helping maintain some sense of normalcy for Sophie and me during this phase. She deserves a medal!] This morning, something was different, contractions picked up shortly after I had called the doctor about a suspicious feeling I was having. About an hour later, they called back and I told them that the contractions (then 8 minutes apart) had really picked up so they told me to go into the Hospital. I was nervous because my doctor was on a medical missions trip to Guatamala and was going to be gone ALL WEEK. Ugh ~ scary! So, with butterflies in my stomach, my mom drove me to Women’s Hospital and we both prayed. The doctor on call ordered us straight to labor and delivery because they thought that this could really be it. I went into the hospital and they checked things out and though the contractions were then about 4 minutes apart, I was hanging in there so they started medicating me to make them stop. I had been contracting for five weeks (went into the hospital for the first time with contractions at 25 weeks) so I thought they'd get it stopped, and surely I would be home with my feet propped up by 5 o'clock. We prayed and prayed that they could get the labor stopped. They pumped me full of medicine… we were SURE it would stop, well Aiden had another idea...

At around 4:30pm, they checked me again because with a cocktail of pain medicines as well as a number of things that they typically use to get contractions stopped, nothing had worked! I was contracting even closer and closer together and they were actually getting CLOSER together and far more painful.  I kept hearing alarms go off, the baby's heart rate kept going down, down, down and mine was going up, up, up with every single contraction. I was scared to death... drugged and scared to death! My mom kept reassuring me that everything would be all right and with tears in her eyes, she looked down at me and said, "We are in the best hospital in the country, I am sure this kind of stuff happens all the time and it will be all right". I have no idea how she held it together. The nurse rushed in and in a calming tone, said, "Just in case we have to have a C-section, I am going to go ahead and get the room ready". Just in CASE??? REALLY??? I thought for sure that the hospital staff had lost their marbles. Dr. Cooper could always get this to stop!!! On the verge of freaking out, I felt a calm rush over me. I told mom that I was scared, but that I was worried about her. Everyone kept looking at me saying how calm I was and all I could say was that God would take care of us. I was so sure of it now.

Paralyzed by fear, the doctor on call for my “mission working doctor” [by the way, it’s only cool that they are charitable and do missions work when you’re not in labor!] came back into the room. She checked me. Two centimeters. She looked at my mom, "Looks like we're going to have to do a C-section, because of their heart rates... we have no choice". She reassured me that the baby, though fragile, would probably be fine since I had been given steroid injections a few weeks beforehand. And, though at 30.5 weeks it would be a tough road, it would be allright because we had made it almost six weeks further than when we first arrived in the hospital at 25 weeks before I was put on strict bed rest. At any rate (argh) we were having a c-section. So, they pumped me full of IV fluids, and rushed me into the operating room. Mom got dressed in her scrubs and because you know my mom, you know that the scrubs swallowed her small frame. I don't think you could see much but her brown hair, her comforting grin, and the tears in her eyes at this point. Someone was going to be a grandmother again, ready or not!

They got me prepped, including an epidural which really helped with the contractions. I remember the anesthesiologist walking in and he said, “How are you holding up?”, and though, I wanted to say, “Great, for someone who is trying to raise a 7 year old and soon to be newborn preemie on her own, I’m FABulous!”, but I didn’t… Unlike my normally opinionated self I was sooooo calm. Maybe they had put something in my IV, but a few moments later and for the first time in months, I was pain free. I wanted to cry, what a relief... but I was terribly concerned about the baby. I was overwhelmed by the cloud of “what-if’s”…. “What if he is malformed”, “What if he can’t breathe”, “What if, what if, what if…”.  I was paralyzed by fear but in my heart I knew that God was steering the events of the day. I had asked him to so many times, so I knew he was in control. Faith, Faith, Faith, I kept telling myself. I had bought a plaque from Hobby Lobby in the early part of my pregnancy which simply read, “FAITH”, and had placed it on the bookshelves near the entrance of the apartment so I could see it on my way in and out. I knew that through Him Aiden and mom and I would be safe, no matter what.

Before I knew it I was lying there with a blue curtain over me and they were tugging and pulling on me. Someone said, "Get her family…. I think her mom is here" and I saw my mom come into the room. She didn't know where to sit or what to do so she sat by my head and kind of pet me and reassured me that it would be okay. I had her watching those baby shows on TLC for weeks before and warned her, "Don't look below the curtain". I didn't want to put her through that. Suddenly, and at about that time, they pulled out the baby and he cried. I couldn't believe he cried!!!  After some more crying on our part, sweet preemie, Aiden, was taken out to the NICU and I laid there with my mom at my head. I told her that it kind of hurt and she said that everything went well. All I could do was say, “I can't believe he cried”.

The next thing I really remember, I was in the recovery room chatting up my nurse, Sharon [anesthesia will do that to you]. She was one of the kindest people. She even moved me to the back of the recovery unit so I could have peace. An eternity went by and my mom was starting to get really anxious (though she didn't tell me for obvious reasons). Then.... the baby was wheeled in! Yep, he was brought in to see me with his entourage of nurses and two doctors in tow and was warming in a mobile incubator. They even let me touch him! He was soft as velvet and was very pink. He looked really healthy short of all of the tubes and wires. He was so tiny and I just thought he was a fighter through my tears; I leaned over and said, “I love you, Aiden”. I reached my hand into the incubator and touched his hand. His breathing was taxed until I touched him. I looked up at my mom and said through my tears, “He knows me!”. The doctor told us that he would be stable and doing well in no time and that he was bigger than most 30 weekers. We said that with the height that runs in our family, I wasn't really surprised.

Knowing that I wouldn't be allowed to see him until the next day, I focused on rest and on praying for my baby. God was in control, and I was going to just let him stay that way. The next day I focused on getting to see my little Aiden. I knew he was struggling and through my tears, I prayed. I sang to him and talked to him. I think he knew me. I also think he knew that I was scared, but that he was safe. I had the doctors and nurses explain to me what the tubes all were and they were able to quell some of my concerns and answer all my questions. I knew that he was going to be protected by that host of angels I had called to stand watch at his bedside.

After being laid off in November, dumped three days before my wedding in December, Bed rest in March and delivering a baby in May, I had had enough… More than a lot of people. I decided back in December of 2008 to permanently and completely let God take the reins and I wasn't about to grab the reins from Him just yet. I don't know that I ever will. I know that he is going to protect us and care for us like he has so many moms along the way. I was discharged three days later and though I thought it was too early (thank you insurance companies), I went home and left my precious little angel at the hospital. I visit every day, pray every hour, and every day he makes a little progress. From breathing with a lot of help, to breathing on his own, he has come a long way.

I just have to focus on healing myself now and giving Aiden enough space to heal himself and visiting him enough so he knows me. I have never felt so stretched, but also never so happy. There really is no greater reward than having your child look into your eyes for the first time, or having your oldest child visit and read to your new baby, "Cus I know how and he needs to hear some of this stuff from me."

In the following picture, Sophie is reading to Aiden in the Level III NICU because they weren't sure that he was going to make it. She read Dr. Suess to him and she swore up and down that he was looking right at her as she read. The lion was a gift to Aiden from my brother's family and was meant to symbolize the fighting spirit and courage of a lion. Just to give you some perpective, the lion is the size of a standard beanie baby.

Sophie came to visit Aiden for the first time in the Level III NICU.

This article was written while Aiden was in the NICU at Women’s Hospital of Texas, where they saved his life almost a year ago today. After 32 days in the NICU Aiden was sent home from the hospital on June 4th, 2009. Though he had oxygen, he soon was released from it and spent the last several months growing… Aiden is a happy one year old and is starting to crawl, pull up, eat solid foods and is the picture of health for the time being. Thank you to all of my friends and family who have, with their support, paved the way for Aiden, Sophie and I to grow as a family. I never could have done this without each and every one of you. Thank you!!!

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After I wrote this post, Aiden continued to fight for his life through Epilepsy, Cerebral Palsy and an immune disorder over the next year and is actually doing terrific. He will be two in May. He and his sister adore each other and thankfully for all of us, he's doing very well now.

Aiden on 2/05/2011

I just KNOW that God will see us through this problem with Sophie and I believe He can work miracles because he already has! As the clock winds down tonight I think of how blessed I am. I have two terrific kids, a loving family, a man who adores me, a strong network of friends and extended family and most importantly a God who knows that I have given every challenge to Him.