Where's my UMBRELLA??

 

WHERE'S MY UMBRELLA?? The state of Texas has been going through the worst drought since the sixties, yet in our house, it doesn't seem to stop RAINING. I know that the rain will stop eventually, but it's just hard sometimes to wrap my head around everything that is happening.

Just when I got Sophie out of the hospital, now Aiden's sick again. His tubes that were surgically placed in his ears just over a year ago have dislodged and now he has to have surgery again. Any time an epileptic has surgery, it can be bad. Praying to God for a positive outcome and that he does well. This time, we suspect the surgeon is going to take the Tonsils and Adenoids also. She's the same surgeon that did Sophie's surgery and I do trust her. And I know that this is a blessing, because I know the surgery will help him (as it did last time) but I just want them both to be HEALTHY for ONCE! And, I'd really like to have some BORING days for a change, but that probably won't be the case because both the kids are just going to have to deal with the chronic problems that they both have. Which means, I get to develop thick skin, and some coping mechanisms. It also means that hopefully, throughout all of this, the kids will both be stronger people and I will somehow keep my sanity.

I am pleased to say, Sophie is back at school today!  She has a letter of modification saying that she can be excused from PE and she needs to carry a water bottle with her but she's there. She is still REALLY light headed and not feeling well, but she's been told that she's just going to have to cope with it as well as she can, and we see the neurology team at TCH during the first week of November. I have also coached her that she needs to get up SLOWLY when she stands, and not overdo it. We will let you know what the plan is from there. Just so you know, the oncologist said that the Dysautonomia is not connected to the Histiocytosis and was likely present before the Histiocytosis diagnosis. It's just completely and totally frustrating that the episodes keep happening. I can't do anything but sit and watch it happen when it does. Luckily with some of the medications they have prescribed her, her symptoms are lessening a little bit. I pray that will continue. She had a couple of bad sinking spells last night.

Here is some information about Disautonomia:

http://my.clevelandclinic.org/disorders/dysautonomia/hic_dysautonomia.aspx

http://dynakids.org/what.jsp

http://www.aan.com/elibrary/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-200703060-00024

About this weekend…. I got away to see the Amazing Mr. P, and to clear my head. IT WAS TIME WELL SPENT!!! And, Sophie was at her dad's for the weekend. I did have to take Aiden to the pediatrician Saturday morning, but Adam's mom is a nurse so I thought it would be safe to take Aiden up there and get away from the rain for a little while. I had the time of my life. We witnessed two of his good friends getting married, which was beautiful. He is a Captain in the military and has served in Afghanistan, so it was a powerful service. I got complimented to no end about my amazing man, and what a difference his friends have seen in him since we started dating. I was totally humbled and honored (as I am by him much of the time anyway) by what all they said about him. He's an Amazing guy, and this was all confirmed AGAIN for me this weekend. And, to top it off, his oldest boy was baptized this weekend and I got to see it. I couldn't make it to his daughter's recent baptism because I was laid up from back surgery, but I was honored to be there for JR's baptism. It's an awesome and powerful moment to see a child decide for themselves that they want to invite Christ into their heart. Few things compare.

It always touches me when I am part of these Mountaintop moments in his life. I am so glad I went up to the hill country and got a chance to get away and things look more manageable now. Between doctors visits, medication dosing, and managing the responsibilities of a full time job, it does get overwhelming. I just see bright things on the horizon and I know that all is not lost. And, I know that God must think I'm really strong, because he keeps giving me more than I can handle. He's stretching me pretty thin, but somehow I know it'll be okay. God brought the Amazing Mr. P and I together and has changed us both from the inside out for the past few years, preparing us for each other. I can't wait to be his wife!

Have a great day friends,

J

Sophie

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

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

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

Sophie Update... IS ANYBODY OUT THERE??

How do you begin to process this? Sophie has been sick since September 12. It's been one month today. We were ordered by her pediatrician to get seen in the Emergency Room after our office visit yesterday. Sophie had been feeling very sluggish and tired after having to go home from school mid morning yesterday. She had missed a lot of school this year so far, so in spite of her having her usual "headache, tummy pain, dizziness and sluggishness", I told her to suck it up and get to school. She didn't have a "fever" it was only 99.5, so I gave her Motrin and sent her on the way…

Well at 8:45am I got a phone call from the nurse. Sophie was there, and she felt terrible. She got on the phone and spoke to me in her puny voice, "Mommy, I don't feel good", I told her that I thought it might be the new medication they put her on and told her to lay down, get a glass of water and something for a snack and then to call me later. She called later and said she was MUCH worse.

She went home to my mom and dad's house and my mom called and said she had just thrown up a LOT. She said that Sophie was asleep but looked like she felt TERRIBLE. So I decided I would go home at lunch and assess the situation and go from there. I got home and saw Sophie lying on the couch and she was completely unaware of her surroundings and was sound asleep. I woke her up and asked what all was wrong. She said, I have a terrible headache, tummy pain, dizziness and I can't stay awake. She also said she was itchy all over. I decided I needed to take a ½ day and got her checked out at the pediatrician's office.

Sophie laying on the bed at the pediatrician's office. I can just see the worry on her face.

On the way into the pediatrician's office, she almost fell down twice and I had to catch her. I escorted her into the office, and helped her take a seat. All the while she clutched a bucket to throw up in just in case. We also had brought some wash clothes just in case there was "something" that might need to be cleaned up. So I checked her in and she continued to look pretty tired... leaning her head on me and then the back of the cushion. Luckily for us, it was the first appointment after lunch, so we didn't have to wait long. She was starting to look pretty green, so we were glad to get to a room where she could lay down.

The nurse came in and started to triage her. I said she's about to throw up everywhere, so I'd be grateful if you could just look in her chart and READ before you start asking me 100 questions. And, I had written out a nice little "cheat sheet" with all of Sophie's current meds, dosing, her doctors and their telephone numbers on them as well as her list of current symptoms that day. She looked at me like I was crazy, I said "We've been at this since November of last year, cataloguing symptoms and medications… you get good at it" she thanked me, took Sophie's vitals and then the doctor came right in.

Sophie liked the young doctor. I told her I had given the nurse this paperwork that might assist her in assessment, and she said that she would definitely take a look as well as at Sophie's chart. She reviewed Sophie's information in the symptoms… and Sophie began to fall asleep lying there. I told the doctor, this just isn't LIKE her! And She felt around on Sophie's tummy, looked into her ears and eyes, nose and mouth. She said her throat was red, but that she was more concerned with the enlarged spleen and LOW BP's.  So, the young doc went and got Sophie's pediatrician who knows us well. She said that she definitely thought Sophie should go over to the ER to get some labs & possible CT or Ultrasound. Sophie was still so dizzy someone had to help her to the car.

Sophie felt realy puny yesterday. Still managed PINK for her IV, though. Girl's gotta REPRESENT!

The Child Life Specialist at TCH, who made Sophie feel so much more comfortable. What you don't see on Sophie's outstretched arm is that the nurse is drawing 12 tubes of blood! Yikes!!!

 We got home after 9 hours of running tests on my precious Sophie with very few answers except to follow up with the pediatrician and Dr. McClain's (her oncology) team this week. In the mean time, Sophie still feels terrible, with nausea, weird rashes, abdominal pain, enlarged spleen and dizzy and I'm praying that someone sees SOMETHING on all these tests that might point to a reason! I'm so tired and worried. Sophie is home now, still feels AWFUL. She has a terrible headache and is very dizzy and lightheaded and though the spleen was on the large side of normal on Ultrasound, when we were in the office (Oncology and pediatricians) no one was even concerned about her spleen, so I believe in my gut that the spleen is enlarging, and that may be part of what is making her feel so rotten. The other factor is that her blood pressure readings are low 91/50 & 81/48 while she was resting prior to discharge. They came up to 105/55 when she was sitting up, but they didn't give any fluids or anything, so I am still concerned because of the dizziness/lightheadedness. She can barely walk, she's so dizzy. Normal for her is 115/78'ish... They gave her Zofran for nausea/vomiting when we arrived, but no fluids were administered. A bunch of labs were drawn and a sinus wash was done as well. An abdominal ultrasound was performed and they sent us home with three prescriptions for stomach issues in hopes that they might help.

Some of the most frightening numbers I've ever seen, though I know it could be worse.

I am praying in the name of Jesus that she is all right. She is going to the Pediatrician and the Dermatologist tomorrow. She's having a few punch biopsies in the morning and then her follow up with the pediatrician in the afternoon. We just HAVE to be able to figure this OUT!!! She still has a low grade temp and a myriad of symptoms this morning. Meanwhile my heart is breaking for my baby girl.

The last time she really felt well... First day of School 2011

Baby Sophie 2002, Easter

Dear God,
The storms that come about in our lives do not make me doubt YOU!!! I do not doubt WHAT YOU DID for ME on the cross. You still changed EVERYTHING for me when I realized that YOU love your children enough to send your only son to DIE for MY SIN! How could I wonder about who you are and why YOU would give Sophie and Aiden these illnesses, when this isn't of YOU at all? I know the NEW covenant and know that the promise of Jesus is to bear our sins FOR us (and our children), not to punish us for it. I want You to be with me right now dear Lord. Be with me, and be with my precious children, Lord. Be with them as they face the most difficult trials they have ever faced!!! Be with me, and walk with us as I see them through this. I only have the power to help them because I love like YOU showed me to love by loving me first! All I can do now is show love to the ones I love, and even the people I don't. All I can do is empty all my selfish thoughts and wants out at the base of the cross and fill myself with Your grace and Your peace. It's by that and that alone that we will be able to face anything, and I thank YOU, God. Help me to show Your unconditional love to my children and please give us peace.

Amen

Goodnight 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