Wedding Pictures!

Well....

The wedding photos are now available courtesy of my dear friend, Melissa Brewer with Snapped with Love Photography. I couldn't be happier with the end result. Come on by and take a look!

http://paulkbunch.shutterfly.com/

Have a great weekend,
J

Breaking News!!! Wedding & kids update!!!

Well the kids are doing okay today... Sophie had some rocky moments, but they are both okay for now...

Sophie: Well, we got a good report at Sophie's Neurology appointment today. We got a call that it had been moved from 9:00 to 10:15, so we ended up finally getting to see him around 10:40 and he did a very thorough exam. This man is the best in the world at this disorder supposedly, so to see him give her a work up was mind boggling. I think he checked everything going on with her. It was great. It took a long time, but even though she was very shy at first, she warmed up. He speakes with an accent, so I think it took some getting used to. She said her favorite part was when he took the vibrating tong and put it on her hands and feet and tested how long it would take her to stop feeling it. He asked a ton of questions, and after she got over her initial shyness, I think she did really well. He wrote a bunch of notes and kept having to run out into the hallway to give his notes to someone and they would type it into the computer. He said that today was their first day on a new computer system. Lucky us! It just meant everything took ten times longer than normal, but it was okay. We all desperately want her to get better, so I think her opening up to such a qualified physician was a great thing. You can't put a time limit on that... He said that she is going to continue to have issues with what he is calling a "generalized disautonomic disorder" but that she should get better with the treatment he is prescribing. He also recommended that we increase her iron because she was severely anemic. He has also recommended vitamin D3 because her vitamin D was low and a few other prescriptions. He said that she should continue to improve.

Then.... we went to the lab. Sophie and I waited and waited until her name was called. She has MAJOR needle anxiety and this was no different. They called her name and said to go to the orange room and then someone came in to stick her. She looked for a vein for a long time. Then, she tried to stick my little angels hand. The woman said she was having trouble getting a vein and that the vein wasn't pumping so she called for back up. Three other techs came in. Sophie started hyperventelating, sweating and got really really red and hot. She was scared to death. The one kindof motherly tech started wiping Sophie's face off with a rag. Sophie started to calm down a little bit. Then the bad news...They were only able to get about 8 cc's and they needed more for the tests they wanted to run. Then, they said they needed to go talk to the supervisor to see if they could get the rest with a finger stick. Sophie started to get more upset. She was really having a tough time... They came back, and got the rest of the blood that they needed but not without a few tears. She is so anxious about bloodwork. I do everything I can to comfort her but her anxiety is through the roof. But, with a promise of going to my office for the balance of the day, Sophie did well. After many long hours at the clinic, we finally got to leave and she was happy as a clam sitting at my office credenza, drinking and Diet Dr. Pepper and playing her game. She's such a kind hearted little girl, it's hard for me to see her have to go through this.


As far as Aiden, the Adenoid/Tubes surgery is in just over a week and though I am nervous, I know he will be allright because he is in good hands. Though I know there could be risks, I also know that he's gone through tubes surgery before and he did really well. And, overall it really helped him have less ear infections than before.

WEDDING NEWS!!! Well... Here it is... After planning for a few months now and realizing that waiting 'til June 2012 with all of the trips back and forth, we've decided to move the wedding up! So, we are getting married in December instead. The wedding is going to be beautiful and we are all very much looking forward to it.

We're going to have a small wedding with our closest family and friends. We appreciate in advance, your prayers for a long and happy marriage. We are overjoyed!

Goodnight Friends,
J

Courage

C'mon PARENTS, GET OFF THE BENCH!!!

In the movie, Courageous, they call out absentee or lukewarm fathers, they call on them to GET IN THE GAME! While I agree that these men need to take responsibility, I feel that as women, we ALSO need to step up to the plate for our children (whether we are single or married) and instill in them the values we want them to mirror to the world. Regardless of whether we have a man who is willing to step up and be the father he needs to be for his kids or not, we still need to take a stand for them and point them toward the best choices possible. Parenting is no easy task, and I am by no means an expert. However, one of the most pogniant questions asked in the film is that if you knew today that your child wasn't going to be with you tomorrow, what would you change?

Would you color with her when all she really wants is time with you? Would you change the way you speak to your teenage daughter who gives you that smirk across the dinner table just to test you? Would you laugh more with the toddler who just wants to roll around on the carpet and be silly? Would you have that shoulder-to-shoulder friendship you know your college aged children are desperate for? Would you take the time to give him the one hug that you said you didn't have time for this morning? Would you listen more? What would you do?

Having two kids with recurrent medical issues, I have had a lot of time to think about this. To cry and think about what might be... and all I can say is that we must do the best we can, strive to be better parents than we know how to be, and savor the time we DO have. Live life fully today, and count your blessings one by one because TODAY, friends... TODAY may be all we've got.

In closing, I hope that for each and every one of you this causes you to take a moment and hug the ones you care about.

Dear God, Be with my friends who don't take the time to savor each moment with their children. Take their hearts and turn them towards You, so they might see grace and peace. It's in Your Son's precious name we pray, Amen.

Goodnight friends,
J

Sophie

This was Last Monday... She was hospitalized for three days following this blog post...

I don't even know where to start. Sophie's not doing very well this morning. Her mobility is really decreased. We're waiting on TCH neurology to get back in touch with us, but we're having to wait several weeks to get in, and though she slept through the night, she did end up in my bed early this morning and was so dizzy this morning that she couldn't even walk down the hall without holding on to stuff. I even had to help her get dressed. She also said that she's having trouble showering, though she hasn't yet asked me to help her with that. I think it's just a matter of time. She gets so dizzy and nauseous every time she stands up. I'm wondering if I can rent a wheelchair or walker to help her get around. I don't think it's something that we need permanently, but it would do a lot in her being able to get out of the house. I can't carry her because of my back surgery (and the fact that she weighs over 130 pounds), but with her dizziness she can't do much... Contrary to today, Sophie had a good day yesterday. She was able to go to Kids XD. It did totally wipe her out, but she went, which I thought was good for her, considering... She got very nauseous and dizzy and lightheaded before bed and had a low grade temp. Adam's kids were here, so I think she wanted to put on a brave face for them.

God please help us get through this. Help the doctors realize that she is my HEART and she NEEDS to be seen! Give us peace.

Amen.

Have a good day friends,

J

What God Really Wants Us to Know!

The New Testament "Gamble" by John Lynch

"What if I tell them who they are?" What if I take away any element of fear in condemnation, judgment or rejection"?

"What if I tell them I love them, will always love them? That I love them right now, no matter what they've done, as much as I love my only Son? That there's nothing they can do to make my love go away"?

"What if I tell them there are no lists? What if I tell them I don't keep a log of past offenses, of how little they pray, how often they've let me down, made promises that they don't keep?"

"What if I tell them they are righteous, with my righteousness, right now"?

"What if I tell them they can stop beating themselves up? That they can stop being so formal, stiff and jumpy around me?"

"What if I tell them I'm crazy about them? What if I tell them, even if they run to the ends of the earth and do the most horrible, unthinkable things, that when they come back, I'd receive them with tears and a party"?

"What if I tell them that I am their Savior, they're going to heaven no matter what--it's a done deal?

"What if I tell them they have a new nature--saints, not saved sinners who should now 'buck up and be better' if they were any kind of Christians, after all He's done for you!"

"What if I tell them that I actually live in them now? That I've put my love, power, and nature inside of them, at their disposal?"

"What if I tell them that they don't have to put on a mask? That it is OK to be who they are at this moment, with all their junk. That they don't need to Pretend about how close we are, how much they pray or don't, how much Bible they read or don't?"

"What if they knew they don't have to look over their shoulder for fear if things get to good, the other shoe's gonna drop?"

"What if they knew I will never, ever use the word "punish" in relation to them?"

"What if they knew that when they mess up, I will never 'get back at them'?"

"What if they were convinced that bad circumstances aren't my way of evening the score for taking advantage of me?"

"What if they knew the basis of our friendship isn't how little they sin, but how much they let me love them?"

"What if I tell them they can hurt my heart, but that I never hurt theirs?"

"What if I tell them I like U2's music too?"

"What if I tell them I never really liked the Christmas hand bell deal with the white gloves?"

"What if I tell them they can open their eyes when they pray and still go to heaven?"

"What if I tell them there is no secret agenda, no trapdoor?"

"What if I tell them it isn't about their self-effort, but about allowing me to live my life through them?"

*****

I had the privelege to hear John Lynch speak this Sunday at my church (http://www.whatisgrace.org/). This was one of the most incredible messages in my recent memory. He talked about the MASKS we put on at church because in some way we believe that the "works" we do will get us into heaven. The Mask Wearers are totally missing the boat. Your ticket to heaven is already bought and paid for!!!

Have a great day friends!!!

J

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



BREAKING NEWS...

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

 

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

 

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

 

Have a great day friends,

J

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

 

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

Fun, Guacamole, Aiden and a Worthwhile Cause!

Fun times...

So, last weekend, I went to visit the Amazing Mr. P and his family (my soon-to-be family). As usual, it was crazy times with five kids in the house. It was very enjoyable though…

Lots of fun and I had the kids take me out on the land and walk me around. Kara and Jonathan have such vivid imaginations. They showed me their hideouts, which are little spots where the trees overhang each other and make these little shelters where they can hide and play and be creative. They talked about all the characters they encounter in the forest and how their adventures take place. They described in vivid detail some of their adventures that involve wolves, cats, badgers and the like. It was incredible to see their little minds working so actively. They're not even eleven yet!

I went to the store on Saturday morning and got a bunch of groceries for the bunch. It was fun grilling out on Saturday! We also had my miracle guacamole.

Here's the recipe:

Miracle Guacamole

7 large avocados, cubed, peeled and seeded

1 Tbsp guacamole

2 limes, juiced and seeded

2 lemons, juiced and seeded

1 cup diced onion

1 cup diced tomatoes, drained

½ Tbsp Cumin

2 Tbsp Salt

1 Tbsp Pepper

1 Jalapeno, seeded, deveined and diced FINE

Combine all ingredients in a LARGE bowl and mash with a potato masher. This guacamole is amazing. If you seal it in an air tight container, you can even have some more the next day!

***

So, we got home Sunday evening, and had a real adventure on the way home. Aiden was so happy, he sang the entire way. We stopped at Applebee's in Brenham, TX for something to eat. We checked in at the front of the restaurant. I told the hostess, we will need a table for two, but we need to tidy up a bit first. So, we made our way to the restroom. There, I changed Aiden's diaper and got him cleaned up and ready to eat. We were both pretty hungry, but Aiden kept flirting with the server. She was a really cute girl in her mid-twenties. She was cooing and gooing at Aiden and he kept playing hide and seek with her. I was hungry, and just as my salad and Aiden's bunch of croutons and tomatoes made it to the table, I heard this awful sound coming from my son... It was #2 time whether I was ready or NOT! I had only brought one diaper in and that was the one I had used BEFORE we sat down. As I pondered... I thought, well they're not THAT busy, we could stay here and eat until someone gave us the 'stink eye', or I could just go get another diaper out of the trunk and go get him cleaned up again. As hungry as we were, I excused ourselves to the hostess and told her to please not give our table away, but the diaper bag was in the car, and I went out and grabbed another diaper and got him cleaned up. I put Aiden up on the changing table and did our thing. Just as I got him cleaned up, and was about to reach for the diaper, I realized that something wet was in my hair. I looked down, and saw my two year-old laughing hysterically at the steady stream spraying the walls and everything in his path. As I quickly covered him up, I realized just how many times I had said, "make sure you put something over that" to other new moms. I just never thought it'd be me. As I strapped his diaper on, I slipped his shorts (which were surprisingly dry at this point) back on his little bottom. I proceeded to grab a hand full of wipes, paper towels and whatever I could find. I felt like a blend of Cinderella and the little Wizard played by Mickey Mouse in the Sorcerer's Apprentice with mops a flurry as I was almost sure someone was going to walk into the restroom and be adequately disgusted at what was happening.

 I cleaned up the mess, had us each wash our hands...WELL... and we went to have our meal. Thankfully the meal was wonderful and the food was hot and tasty. With all that said, it was a terrific (and quite hilarious) trip home. It was awesome to see Aiden so happy and cheerful. I played Elmo videos on the portable DVD player in the car, which never hurts.  He stayed home sick Monday with a low grade temperature, which I'm praying was just because he was exhausted and/or teething. The moral of this story is, NEVER LEAVE THE DIAPER BAG IN THE CAR, ALWAYS COVER LITTLE BOYS DURING DIAPER CHANGES and ALWAYS PACK ELMO when a two year old is involved. This episode might have been upsetting to some, but to me it was just funny. It's like nothing little (like this) bothers me anymore. I have something pretty useful these days... it's called PERSPECTIVE. lol...

Aiden Update:

In other news today, we got some news... This morning, the woman from the PT/OT's office got to visit Aiden in day care. She said that she is still noticing (As I have been) that Aiden is still not moving as much on his right side of his body. It's disheartening, considering how much work we have done. It's like he's just not there yet.

Here's what she said, "Hi J, I wanted to let you know that I did get an opportunity to go to school to "peek" at Mr. Aiden cutie. I too noticed some asymmetry in his movements. This perhaps could be about him getting a bit bigger or about him trying to perform movements faster as I saw him on the playground with friends.   After I spoke with T, we both feel he would benefit from services again.  Unfortunately (due to the paperwork process), this means re-qualifying him, unless of course you would prefer to access private therapy facilities that are here locally.  I can provide you with that information should that be easiest for your family.  He otherwise was very engaging, friendly, and eager to perform the "big boy" skills.  Just let me know if you would like me to initiate a PT/OT referral again so that T and I can schedule a mtg. with you.  Take Care, D" I agree with her, that we would like to see him qualify for services again, but it's just a hard pill to swallow. I know the doctors said to prepare for him to have developmental delays, he's just been doing so well.

I will keep you guys posted as to the process with li'l man. I pray that he is really going to benefit from PT/OT again and hopefully make strides, and keep improving. I am praying for education, awareness and increasing ability in the disorders that both of my children have.

Histiocytosis (A Worthwhile Cause!) Update:

I also had the blessing of attending a Twitter chat on www.twitter.com at #abcDrBchat today during my lunch hour. It was amazing!!! I am new to twitter. You can follow me @BuzzAboutJodi if you would like. I forwarded this twitter chat on to a few people in the effort to raise awareness about histiocytosis, and we just might get some folks interested in helping partner with us to raise awareness and to help with fundraisers. It's so exciting to be able to help. Most caregivers of histio patients have too much care giving to do, therefore the awareness aspect is the last thing they are able to help with. Thankfully, Sophie isn't one of the sickest, so I can help. I can be a voice for those who can't speak for the ones they love.

Tonight Dear God, I just want to pray for those moms and dads who have too many worries to watch and enjoy a TV show. I want to pray for the ones who sit by their sick kids' bed and watch them breathe just to be sure they don't stop.. I want to pray for those parents who sit exhausted after many long nights at the hospital or by a bed side, and the drip of an IV bag becomes like a second hand on a clock to them. Only there isn't any real time in their world anymore; other than the time it takes for the chemo or the life saving medicine to reach their child, so they can finally be sure that the next breath will come. I want to pray for those people who sit, months after an illness with pile of medical bills they're afraid to open, tears running down their tired cheeks. I want to pray for the people in our country who can't get the care they need for themselves or their children for whatever reason, and for the doctors on the front lines, who have a heart to find cures for illness. May you comfort them all, Lord. May you comfort them all right now. Amen.

Goodnight friends,
J

Mid-Summer Update…

This time of the year (where Sophie’s with her dad) is hard on me. I will admit it. I miss her every day and feel like a part of me is missing. Luckily, she and I have been able to Skype with Aiden there and he’s gotten all giggly with her on the line. Also, she got to stay overnight last Friday before she went back down to see her grandparents and cousins for the second part of her dad’s time with her. On another positive note, I have been distracted by many things like work, wedding planning and hanging out with my li’l man. So, life is really good. And, for the moment, to my surprise, the kids have both been… wait for it… HEALTHY! I thank God daily for that.

I have been able to spend a lot of time with my fiancé over the first part of this summer, which has been incredible. Being with him more often confirms our decision to marry and being around he and his four gorgeous children delights my heart and makes me look forward to the future in a LOT of ways. I can’t wait for our wedding next summer and the fun events that will surround our event. I can’t even begin to tell you how I am looking forward to being his wife. The amazing Mr. P’s WIFE! **sigh** And, mother to SIX beautiful, amazing, precious, intelligent, unique and God-filled CHILDREN! ME, who I thought might never have more than one child… and I’m going to have SIX! WOW!!!

I am going to be researching many many things over the next few months. Aside from all the wedding stuff, I am going to be researching blended families and finding out what works and what doesn’t. I am going to be asking everyone I know about how they keep track of scheduling, budgeting and organizing their homes with that many kiddos. I am completely open to your suggestions and look forward to hearing them!

Well… I guess that’s all for now! Have a great day friends!

J

YOUR WEDDING PICTURES WANTED!

This is going to be so NEAT!

I hope I can get your participation with this... It will be so cool...

I would like to put together a project for my upcoming wedding to the amazing Mr. P and I need your help! I need you to have your friends and family members email me their wedding picture. You know, bride and groom, for this project I'm working on. Could you please try to do this soon? I would also like their first names and their anniversary date. This will be so neat and VERY vintage in feel... I can't wait! Please join in the fun. You can email me at jodimmorgan@yahoo.com the picture or message me for my mailing address to send a copy.

Thanks!

I will update my blog after the wedding day with the results of the VERY cool project! I can't wait!!!

Have a great day friends,
J

A crowded room

Sophie is in having her MRI now. They are checking her thyroid and pituitary function for something called Diabetes Insipidous. DI is not Sugar Diabetes but is water diabetes and is a side effect of Histiocytosis. I pray she doesn't have it, but they're going to check. They are also checking her tumor to see if it is shrinking. I'm praying that is the case and nothing else is going on... As I sit, I am pondering...

I am a part of a new community of Histiocytosis and cancer parents I can't help but flash in my head the men, women and children we have seen on our many visits to the cancer center.

We have seen parents wrought with worry and concern, siblings bored out of their minds, but you can see their concern too. I walk by them, with their different electronic devices and I pray silently to myself that something would ease their pain.

As I sit in this crowded room, a mom sits with her eight year-old son peering over her shoulder at her iPad. Next to her sits a man who appears to have cried a lot today. His face is red, and he keeps getting up to pace the room.

Next to them, a father and his son sit with their Astros shirts on. They laugh and look over to the TV that's playing an old movie about a dog with a very solemn soundtrack. Further around the corner lay two brothers with their mom texting anxiously.

Then the doctor came out to report on their child's heart. This is the dad who looked like he was crying and the iPad mom and big brother. Now I know why they looked so sad. Mom has a stoic expression.... And tries to smile in spite of the news she just got. Inoperable isn't a good thing to hear. She tells her son that he can go stay with Grammy. He hugs her tight and just says, "I just want to be with you and Dad" and he starts to cry.

Every family has a story. Before you judge people for wearing the wrong thing, having hair that's a mess... or something else... Just please remember that they are probably going through something heavy too.

In this crowded room...

God bless dear ones,
J

Sent from my iPhone

This weekend, Sophie Update and Prayer for Adam!

This was an amazing weekend, filled with some of the best memories of my lifetime. My brother had just been ordained a United Methodist Pastor, so his church held a very nice reception for him. There was a pot-luck and the food and fellowship were amazing. Sophie was not able to attend, but Adam was able to join us. A beautiful letter was written by my mom and dad to my brother. It was read at the reception. Lots of fun memories were described and I think my brother was totally speechless.

We got in around four o’clock and settled in for the evening. It was a lot of driving for poor little Aiden, he was extremely tired and cranky, but after he got his bath, he laid down just fine. Sophie is the one I am sort of worried about today... When she got out of the shower, I examined her for any changes in “Ouchie the Bump”, well to my dismay the area where her bump is has changed. There used to be a “nodule” where the original tumor was, as well as a kind of sunken in part to her tumor injection site. Well, last night, it was more bulbous and curved outward instead of inward. I am hoping and praying that it’s nothing because that would mean chemo… I have emailed and called her doctor at the Cancer Center to see if we should go ahead and get her seen, or wait ‘til Mid-July when her scans are scheduled. Please keep the prayers coming!

In wedding news… The wedding planning is coming along nicely. We have decided on a venue and are looking forward to being married there. It’s tough to do a wedding on a super tight budget, but I am sure it will still be very nice. We have been hunting for a reception venue and I’m sure we’ll come up with a place soon, and it will be beautiful. We have decided that we need to get some things planned now, and set, so that if Sophie’s LCH gets worse, we have some things checked off the “to-do” list and can roll forward easily towards our wedding date without too much stress. God knows we have enough from other sources, lol…

This is a prayer for my fiance and I...

Dear Lord,

Grant that I and my future spouse may have a true

and understanding love for each other.

Grant that we may both

be filled with faith and trust.

Give us the grace to live

with each other in peace and harmony.

May we always bear with one another's weaknesses

and grow from each other's strengths.

help us to forgive one another's failings

and grant us patience, kindness, cheerfulness

and the spirit of placing the well-being

of one another ahead of self.

May the love that brought us together

grow and mature with each passing year.

Bring us both ever closer to You

through our love for each other.

Let our love grow to perfection.

Amen.

Good day friends,

J

What Happens In Vegas, doesn't always stay in Vegas!!!

Terry Fator: Live from Las Vegas  <-- We saw this comedian/ventriloquist while we were there. He was AWESOME! He gives a lot of $$$ back to St. Jude's and our Troops! Buy a CD! It's for a great cause!!!

I am so happy! The weekend in Vegas far exceeded my expectations!!!

Getting to Vegas was no easy task. I was buzzing around like a busy bee at work on Friday, trying hard to keep my focus before such an amazing trip. My boyfriend had told me he needed me to go and get something from the jewelry store on Friday when he left last weekend, so I kind of knew it was coming. I just didn't know when exactly. My friend Tonya and I went out for a celebratory lunch on Friday and toasted with our sodas to the fun that was about to commence after picking up the ring. I had to try it on to see if it would fit at the jeweler but I didn't keep it on long before putting it back in the box… lol... That afternoon I buzzed around the office some more, until 5 o'clock finally arrived, and I could cruise on over to the airport.

The suspense had been building for our trip for weeks, so I was extremely excited. And, with the events of the last few months, I really NEEDED a break. Seriously! I went straight from work to the airport, and upon arrival, my flight was delayed 20 minutes, then 30, then an hour. Then, we got on the plane to board and took off for Phoenix. It was an extremely rocky flight. A lot of turbulence on this flight! And I kept thinking, "Okay, God, we've come through so much, you can get a plane full of people to Vegas!" and besides, I had so much to look forward to, I was like, "C'mon l'il plane, you can DO this!!!"

We finally got to Phoenix at around 9:30 Phoenix time (11:30am central). Then we found out that the flight that would be taking us on the connection to Vegas would be delayed an additional few hours, but no one had any idea it would be FOUR MORE HOURS. So, it was about 12:45am Phoenix time before they arrived. Adam and I had been texting along the way, and when they got on the runway, he texted me and said, "We've landed" and I was able to wake up, shake myself off, and be somewhat presentable after lying around the airport for four hours. I most certainly looked exhausted and my cute outfit that I had meticulously planned that morning was wrinkled, my hair a mess, my shoes were killing me (remind me NEVER to wear heels on a flight half way across the country) and I had the ring in my purse!

I couldn't wait to see Adam, the love of my life, sitting on the plane waiting for me. My expectations diminished a bit when I couldn't even see him when I got on the flight. I looked and looked and I couldn't see him. My heart absolutely SUNK…. Then, 20 rows back, his brown hair and blue eyes popped up to reveal his amazing smile, as wide as his face and he welcomed me to the row with a great big hug! Then, we talked for a bit and I silently reached into my purse and grabbed the ring and handed it to him. He took it out, looked at it, smiled, and we talked a bit more and he put it back in my purse because the flight was getting ready to take off. And, we had the row to ourselves. It was awesome to be able to sit and snuggle and look at the lights of Vegas as we landed.  So, we were pushing back from the gate at about 1:15pm. Reminded, this is 3:15am central time! So, we were in our room at the Mirage by 3:30am (5:30am central time). It was frustrating, but we were so thankful to just be together at this point!



As I reached down to unpack my suitcase, Adam walked up behind me and said my name, and I turned around like, "huh?" There he was, on bended knee and he looked up at me and said, "Will you Marry Me? I want you to wear the ring this weekend and for the rest of our lives", I got down on my knees and hugged him tight and said "Yes, of course I will!" and we were both shaking at this point. Then, he reached down and took the ring out of the box and put it on my finger. I was so surprised, even though I had been expecting it sometime this weekend. I am totally overwhelmed with gratefulness to God for bringing Adam to my life. He has changed everything. After the heartache of the past, God has brought someone to my life that has changed everything for the better, and has caused my heart to expand in ways I never thought it would. I love you Adam!

All dressed up to go see Terry Fator at the Mirage!

Ready for a night out in my new Stella & Dot necklace!

We had an incredible weekend of great food, fun times and LOTS of walking. Even though it was cut short by the delays on Friday/Saturday, it was still so much fun and we had some terrific memories. We went to Madame Tussuad's Wax Museum, which was one of our favorite photo ops!

I can't wait to start my life with him. Having a long engagement will be good for everyone involved, but I realize that it will be challenging. I know we'll make it. Us and our little Brady Bunch Family...  I am 100% sure it won't be perfect, but it will be fun, it'll be exciting, and it'll be full of love and awesome memories.  

God is SO good!

Goodnight friends!!!

J