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



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

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

 

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

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 16^th 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.

What I did for ME!

Well, tonight's blog post is going to be short, and for once, thankfully, it won't be completely about the kids. I am so excited about what I did for ME today. I went to Homegoods and bought a new duvet cover and shams for my down comforter and finally think I have the room I want. After over a year of living in our house, I love my room. It just feels right now... Take a look...

And... the best part of the duvet and shams is that they were only $30 bucks! I was thrilled. The ones I have been looking at were at least $150, just for the duvet.

The two pillows that look like they have flower petals on them were at Kirkland's Home for only $15 on clearance! Score! And, the other two I owned already.

The only opinion that really matters is the kids... he said it was Sofff...

Aiden and I had a great weekend. We went to the park yesterday and to La Centerra today. He had a blast running around and getting some good exercise. It was so awesome to see Aiden's mental development in action, because I think it's really taking off. His seizures, which I pray are under control after seizure on 3/6 and the EEG on 3/16 (which we won't know results on until next week). I just know by how he's acting that he's probably doing fine. He was ALL over the place. Acting VERY much like an almost normal two year-old. He still falls quite a lot, and there's a great deal of weakness still on the right side and the upper body as a whole, but nothing major enough to call the doctor on, I will just mention it at his one year appointment in May unless new symptoms develop. They did say to expect some weakness with the CP.

Well tonight, Sophie got home around 5 o'clock. We ate Chinese food and did 30 minutes on the Wii Just Dance game. Wii are both going to be sore tomorrow. I was just glad she was up to shaking her booty. Poor thing has been so run down lately. She's lying on the couch now, about to go to bed and can barely keep her eyes open. She had to wake up this morning at 6am and I heard from her that she was the acolyte at the early service this morning. I'm sorry I missed it. She said that going to three services with her dad is a lot of work, but she also said that she's feeling a little better this week (thank God). Hopefully, she will continue on the positive path and will continue to heal and won't develop any new issues between now and her next appointment, April 11th.

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!!!

************************************************************************************
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.

What a day!

Well today was THE day. The day that Sophie, her dad, my mom and I all met the doctors that will be carrying us through Sophie's treatment for the next 12 months. I woke up around 4:30am today to shower and get a few things squared away before we made the trek to Texas Children's. I wanted a moment to focus and pray before we left for what was sure to be a life altering day. Sophie slept 'til 5:15am and woke up asking questions.... a million questions and wanted to go ahead and go over there and see the doctors so she would know what's going on. I completely understood.

The sitter arrived to care for Aiden, my almost 2 year old that's not allowed in group care yet due to his immune disorder. We said our goodbyes and my mom picked us up for the journey at 6:00am. I had packed two overnight bags (one for Sophie, one for myself) just in the event that we had to have a procedure of some sort done and had to stay over night. Luckily we did not, but it's always good to be prepared. So, we arrived at Texas Children's around 7:15am and got coffee and Sophie had some berries in the car and a muffin once we got there. She was in relatively good spirits, but my stomach was in knots! I couldn't eat and my stomach was doing flip-flops the whole hour we waited for the nurse to call us back.

The hardest part about being there was seeing the really sick kids. Sophie's sick too, but some of these little angels could barely sit up, they felt so bad. My heart ached for the little 15 month old whose mom was there in her business suit and he had to wear a helmet for fear he might fall. He was precious. Then, there were the teenagers, so awkward and beautiful, peering over their masks from under wigs and hand made hats. I wish there was a cure for these diseases. These kids absolutely don't deserve to live this way, struggling to breathe, constantly in pain, or on crutches...Such hopes and potential... I just desperately hope that they all see adulthood. It truly broke my heart.

I really have a heart for kids. When I was a single girl, I thought I might never have kids, but now I can't imagine my life without them. After Aiden's severe prematurity, cerebral palsy, immune issues and now with Sophie's LCH, I still wouldn't trade either one of them for anything in the world. I would take on every last ache and pain she feels now away if I could. I would wave my wand and relieve every pain, frustration or disappointment they will ever feel, if it meant that they could live longer and happier lives. I guess that's just the sign that I'm supposed to be a mom. I used to think that money was more important than things, but these two "things", Aiden & Sophie, have changed who I am to the core. To think that Sophie might have to suffer like one of the kids in the waiting room, I just wish I could bear that burden for her and she could recover anyway. Kind of like chemo surrogacy! What a concept... But, for now I will just be there, holding her hand, easing her frustration and trying to make sure she's happy, content, and as normal as possible given the circumstances we've found ourselves in.

Sophie and me as we waited to be called back to see the Oncologist.

After playing a game and watching Sophie enjoy a Star Wars book they had in the waiting room, we realized it had been a while. We all started to look around and I started to get a little antsy about the appointment. What would he say? Is it possible that she has something else? What is the treatment? How bad will it be? How long? Will she lose her beautiful hair? Will she have to have another surgery? After taking a deep breath and praying for peace, I calmed down and leaned over to her and said, as much to Sophie as to myself, "It's gonna be okay, baby." About that time, Sophie went over to the computers with her dad and her pager went off. We went to the front of the room and waited until we were escorted back to the room and Sophie's vitals were taken and everything was status quo, and then the doctor walked in.

A cordial man in his fifties, he started by talking about what has happened to Sophie so far, he asked a lot of questions and we talked about her symptoms in detail. He said that chemo was the best option considering the entire picture of what symptoms she has.... and then the most important thing... He said this treatment plan they wanted to start on her was 90% effective! I wanted to jump to my feet and yell HALLELUJAH! The doctor then explained the detail of what type of chemotherapy drugs they will use and that it's a lower dose than used to treat cancer so she may have less discomfort and would likely not lose all of her hair. He then said that it will be a 12 month course, with 6 weeks every week and then a reassessment period and then hopefully every three weeks for the remainder of the year time frame. She will be monitored closely and have things re-adjusted as need be. He explained the side effects but then also reminded us that this would likely send her into remission to which we all smiled.

I sucked back tears and looked at my mom, then to Sophie's dad and then to Sophie who's face was still in shock I think as she played with the stuffed dog she's had since she was two. The doctor even asked what the dog's name was. She said, "This is Puppy". He sat on the exam table next to Sophie and reassured her that it was going to be okay as his associate walked in and he removed her stitches. He explained that they would both be monitoring her closely and then gave us his card with his direct information and his email address. I guess when there are 300 new cases worldwide every year, you can afford to have your patients reach you. He seemed like a nice enough guy, and they both seemed highly intelligent and personable.

After the appointment, Gerald went back to work and Sophie got her second wind after we grabbed a quick bite to eat. We went by Target and picked up a few new things for Sophie for school and I just sank. After the adrenaline pumping through my veins the last few days I really needed a nap. After getting Sophie settled in, I laid down for a little bit and felt 110% better. I was thankful that my mom had offered to run to the store real quick for milk and when she came back I was revived and rejuvenated and she went home and got some much needed rest herself.

So, as I live with little sleep and choke back the constant lump in my throat, I wonder how long this fear and sadness will linger before I find peace with the whole situation. I am writing this blog to help me find some sort of outlet to express my feelings, and as I read and edit my posts I see why it is so important for me to write when I'm going through the tough stuff. It really helps you find your strength and I HIGHLY recommend it!

In closing tonight, as I ponder the future, I wonder about a lot of things... I wonder about what chemo will really be like. I wonder if the doctors are downplaying how bad this is going to suck just because to them... well to them they see it all the time. I need to go to bed, but for now I am going to stop and pray. And...remember WHOSE we are!

I pray Psalm 147:3-5  tonight...

Dear God,  Tonight, I am reminded that our Father....

He heals the brokenhearted and binds up their wounds.

He determines the number of the stars and calls them each by name.

Great is our Lord and mighty in power; his understanding has no limit.

Help reveal the answers and your understanding to the doctors and the nurses that will watch over Sophie this year. Show me your grace and your peace as I assist her and act as the sidekick to the hero she already is with your strength to back her up. O Lord, our comforter and our strength.

Amen

Everyone urged me to do this...

I want to dedicate this blog to my kids... Sophie and Aiden. Many of you have asked me to start keeping a blog and I really think it will help too. I am pouring my heart out here.... so here it goes.

Last week my heart dropped into the bottom of my stomach when we heard those horrifying words.... Your daughter likely has Histiocytosis - X. She's eight. We haven't met with the doctors to confirm everything or verify to what extent the disease has spread in her body, but this was not exactly what we (or anyone for that matter) wants to hear.

Sophie - Christmas 2004

Our journey as a single parent family began when, in 2004 when Sophie's father and I separated after almost five years of marriage. She was 2 1/2 when we divorced in May of 2005. Though she had struggled with asthma since she was born, she was doing very well with her new course of medication and with breathing treatments. She was a thriving and very normal, happy kid. She loves most of the things that eight year-old girls are into... Horses, Dogs, Fashion Design and playing with her itouch. She enjoys playing with her friends and even her little brother, Aiden who is now almost two after overcoming some amazing obstacles of his own since birth. That's a story for another post. This one is about her.



Sophie on the first day of second grade with her baby brother.

She was even on a cheer leading squad until November of 2010 when we first noticed it. "It" she would soon nickname "Ouchie the bump". One evening, she didn't want to do cheer because her bump hurt so bad, so I knew something was very wrong.

Sophie loves Cheer 4 U and got over some of her shyness.

Sophie cried and said Ouchie hurt, so I took her to the dermatologist, where due to some scaly rash on her scalp, prescribed a dandruff medication that did not ease the bump or the dandruff. So, a few weeks later, we went back. Ouchie had then grown to about half an inch. Ouchie hurt more. So, the Dermatologist lanced Ouchie and, though he didn't get much, sent it off to be cultured anyway and prescribed antibiotics. At this point I had a VERY bad feeling. You know the kind of gut feeling you get when you know things just aren't right? Well, the antibiotics didn't work and the culture didn't show anything, but by then Ouchie was much larger and much more painful so we went back to the dermatologist who then did a biopsy of Ouchie. I watched as the Dermatologist took a scoop of tissue out of Sophie's head. She cringed, and I almost fainted, but I thought surely it wouldn't show anything. And, when it came back as a "Lipoma" (just a benign fatty tumor) we were relieved, VERY relieved... Then, we went to the head and neck surgeon the very next week. I still had a bad feeling, but was hopeful at this point that my butterflies were just me being overprotective and worrying too much (I'm a mom, it comes with the territory).

So, we walked into the Specialist's office and I thought, "this is gonna be a piece of cake! she did my son's tubes, I know her, she's got an impeccable reputation and this is gonna be EASY PEASY!".... I was VERY WRONG! After the Head and Neck Surgeon/ENT looked at the tumor on Sophie's head she said, "I'm not convinced it's a Lipoma". "Huh, What?, Did I hear you right?" She said it looked like an area of suspicious inflammation but likely not a tumor.... Okay.... Well, then I asked her, "Do you think it's cancer?", to which she said, "Well, skin cancer usually doesn't hurt"... So, I'm making the rounds in my head... Well it's probably just a bad cyst or an inflamed hair follicle... But then she said, "It really has to come out and get biopsied".

So, we scheduled the surgery for last Friday, the 28th. At 6:45 am, we left my house, with multiple stuffed animals in tow, to head to the surgery center for the procedure. She was such a trooper.


Sophie waiting to go into surgery 1/28/2011

 They walked Sophie into surgery and my ex and I walked out into the waiting room. The time really dragged by slowly. Until it had reached one hour that she had been in there. I got a terrible feeling in the pit of my stomach because she said it would be a very straight forward procedure and she might be in the OR a total of 20 minutes max for this procedure. So, when the doctor came out of surgery MUCH later than she was expected (at about an hour and 12 minutes, but who's counting), my suspicions that something was wrong were confirmed. She came out, looked at my mom and I, crossed her arms and began to describe going in to the lesion area and realizing that the original biopsy hadn't even scratched the surface of the existing tumor. We called my ex over and then the surgeon then explained that she removed the existing tumor/lesion and sent it off for biopsy and then as she went in further, there was a very abnormal inflammatory area beneath the lesion that was in the lining of the skull. She said that she also sent that area off for biopsy and that we would either know that day (Friday) or possibly Monday.

We were waiting with baited breath but then Sophie started feeling really bad on Saturday afternoon. I called the doctor on call because she had a very flushed look, a rash and a low grade temperature. The on call doctor said to take her off the Antibiotic, the pain med and give her Benadryl and Motrin instead. I did and she rested, and looked like she felt a tad better on Sunday. And then she got much worse. Her temp came back and the rash was red again and she just felt VERY tired. She never naps during the day and she actually laid down for over two hours. I called the on call doc when she woke up complaining again and said she really still felt sick. So, we went to the ER on his advice, and were given IV antibiotic, fluids and steroid. At discharge around 10, I thought I had a new child. Seriously. She was feeling so much better. Tired, but better... So, we went home and tried to get some sleep.

Monday morning, I called the ENT to see if we could get an appointment that day because she was still feeling rotten when she woke up. They then called us back and said, you guys need to come in and get the results of the biopsy because they are back and she can talk to you then. So, I took Sophie to the doctor and we got the terrible news I described earlier. Histiocytosis X. I can't even describe how it felt. When the doctor says, "Don't google it, It'll scare you to death", it's only natural to get worried. She explained that this disorder was serious, but that the cure rate was good now. She told us that she had already called the pediatrician and that she had also called the Oncologist at TCH with a referral for us. She said that it's treated in the Cancer Center at TCH even though it's not cancer.

What? Not cancer, but treated like cancer? That means Chemo and Radiation, and that my kiddo was sick people! I was NOT happy! Two sick kids? REALLY???

After crying a LOT Monday night, and talking to my mom in the hallway at Methodist about what was going on Monday after the appointment, we went home and tried to act like business as usual.... Easier said than done!

Tuesday morning, my dad had just had surgery and the babysitter was at my house. Sophie was complaining of being short of breath, and her rash was worse and she again had a temp. We then went to the ER. I was thinking, as we drove across town that I needed to be calm and remember what God did for Aiden over the last few years. He was surely going to protect her too! We called the Cancer Center at TCH to let them know we were on the way because we weren't sure that the ER was where she needed to be. They said definitely go through the ER!




Sophie drew a picture for everyone that helped her that day, I think.

  So, once we got there, got through triage, we sat and waited most of the day for them to give us answers. They examined her thoroughly and finally had a "skeletal survey" done and went home. Being there didn't yield much, but we did get moved to the front lines of the schedule at TCH. They said that normally people have to wait a long time to see this doctor, but that we could have Monday morning, the 7th at 8am. Sign us up! I said.... I am so ready for her to stop hurting, stop itching and stop having suspicious symptoms.

The silver lining in all this is that Sophie's still in pretty good spirits, even though there have been a few tears. I got the report from the skeletal survey and it says the lesion is still there. I called yesterday (Friday the 4th) and got the final biopsy report and it's not good. The words "diffusely and strongly positive" were used. I wept. I just wept and wept as those two forms opened up off the email. I had to look at the top of the paper and make sure they had the right patient.

After reading some more information last night, and reviewing the biopsy reports I did some research. I know she said "don't google it" but WHATEVER. I know I'm not a doctor, but I looked through papers authored by the doctor that will assist us and watched videos by him. I think that's likely to be relevant information. And, in looking at the information, the diagnosis of Langerhans Cell Histiocytosis is EXTREMELY RARE. Only 5:1M kids get it every year and even fewer adults. It tends to afflict children <10 y/o most often, and in the youngest children it can be fatal. There is no known cause and no known cure. Government funding is nonexistent because it's too small of a population that suffer from this disease.

http://www.histio.org/ is the link to the Histiocytosis Foundation.

I have spent the last few days sick... just sick to my stomach and confused beyond belief and numb. I have cried on the phone with my boyfriend, shared with a few of my friends who have been through their own share of medical stuff... but no one that has been through this exact thing because it's so rare. It's called an "orphan disease".

I am sad and scared and prayerful. I know God is good because he is still here loving me, even though I am not the best person. He loves me like I'm one of his kids, and he will never leave me. I have tried to give back this year by helping with CHLB and giving money when I can to the church, but we will lean on him again, just like I did when my son was so sick. I am uniquely equipped to handle this, and maybe that's why I feel so strongly that we're gonna be alright. I don't know how we'll get through, but we will. We just have to!