I am a Christian mom of two kiddos with medical challenges (Histiocytosis-X, Dysautonomia, Epilepsy, Cerebral Palsy) who wants to share my story to inspire others to keep going and leaning on God while living life fully today! This blog is intended to express that we are living life fully today... one day at a time... no matter what happened yesterday or what will happen tomorrow.
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Monday, October 24, 2011
Where's my UMBRELLA??
Monday, October 10, 2011
We have to do WHAT?? (and an update on the kids)
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...
Thursday, September 29, 2011
BREAKING NEWS...
Well we got some really great news yesterday. Sophie’s art has been chosen by her art teacher to be part of the display in the district’s current Administration office display. The artwork was chosen from artwork by students from students in Kindergarten – twelfth grade from selections throughout the forty-five campuses in our district. I am so proud. I don’t even know which piece of hers was chosen, and I can’t wait to see the display! I will most certainly post pictures as soon as they are available.
Ahhh… Back to school. Nothing like being back to school… The movie “You’ve got Mail” affectionately discusses back to school’s essence as “Don't you love New York in the fall? It makes me wanna buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address.” The affection is somehow lost on us… For us, back to school really means that the cesspool of germs and viruses is running rampant through the halls. Sneezy, Viral, Snotty Mucus-riddled children wiping their noses and then slobbering down a water fountain just really makes me wish I could wrap both my kids in bubble wrap before send them off… But then again, the ridicule that would be directed their way would be unparalleled and I would rather save them both the horror of that humiliation. Unfortunately, in our case, that’s how we look at things. It’s not the most ideal thing in the world as far as my children are concerned. With Sophie suffering with Histiocytosis and now Mononucleosis, and Aiden having Epilepsy and Hypergammaglobulenemia, it makes for an interesting season to say the least. Both kids have missed a lot of school thus far. The first two weeks of school it was a bad stomach bug. Included vomiting and diarrhea and temperatures and we all passed it around. Aiden and Sophie both had to go to the ER with that one, but for different reasons. Aiden because he was absolutely dehydrated. He had to receive IV fluids because he couldn’t eat or drink ANYTHING without throwing up which also meant he couldn’t get his seizure medicine, so we HAD to get him well enough to take his meds. I am hopeful that as their immune systems get stronger, they will both see a break in all the viral illnesses. Sophie’s was different. She presented last Saturday with chest tightness and dizziness. So, I automatically assumed she was having a Histio relapse, but she wasn’t thank God. She tossed her cookies as we were sitting in the ER waiting after triage had seen her and moved her to the front of the line. It’s not good to have a kid with an illness that gets moved to the front of the line… but both of mine do. When you walk into the ER and tell them your kid has tightness in her chest and dizziness and she’s got Histiocytosis and is treated at Texas Children’s Cancer Center, you’d be surprised how quickly they push you to the head of the line. Unfortunately, I have spent WAY too much money this year on copays, prescriptions and coinsurance amounts. We are totally just spent…
I am hopeful that this year will turn around and that next year will be better as far as medical expenses go. It could be so much worse, and I am thankful for all we DO have. I am blessed beyond measure…
Have a great day friends,
J
Tuesday, September 6, 2011
Crazy Day!
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!
Wednesday, August 31, 2011
What the???
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 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.
Tuesday, June 28, 2011
Surgery and SKYPE ROCKS!!!
And, well, I just don't like the idea of having to have surgery... but after the GI doc told me I can't be on anti-inflammatory meds anymore because they're tearing up my stomach, well something had to give. A few weeks ago, when I threw my back out as we were going in for Sophie's MRI, I knew I needed to do something. So, I got into the room and heard the doctor's squeaky tennis shoes creeping closer to my door. He put his little rubber hammer down, and said, "Let's just talk..." I said, "What did it say?" He tactfully tried to lay out my options, but explained that he knew what I would probably want to do. He said that epidural injections and PT may buy us a little time, but that surgery was going to give me quality of life and prevent nerve damage. I am scared to death at this point. So, he talks a little more and all I can hear is "Wah wah wah (think Charlie Brown's mom here)" and I am led by the Yale educated doctor out to the screen where he shows me my MRI pictures in more detail. He says, "here's the herniation, and here's where it's pushing the nerves that control your left leg, and your right" All I could do was choke back tears as I walked back to the exam room. I said that I needed to know what kind of recovery was involved in something like this. He explained, and I probably heard half of what he said. He gave me a pamphlet and then said to think it through and to let him know, but encouraged me to get on his schedule because he only does surgery one day a week. I thanked him and a nice young lady walked in and had me go out into the waiting area. A thought cloud formed above my head.... "Surgery??... Sigh... Don't they know my daughter has LCH and my son has Epilepsy and CP? Don't they know I have a friggin' nough on my plate without THIS?" I started to text my family and then got called back to get on the schedule. I talked to my family and friends and am definitely getting a second opinion. Please say a little prayer for me. I would be grateful!
Well something absolutely wonderful happened tonight. I got to talk to Sophie with Aiden in my lap while she was in South Padre Island visiting the other side of her family. Though some people may not think this kind of technology is amazing, for us it absolutely was.
See, I have only been using Skype for a few months. And, well Sophie was just diagnosed with LCH in January, so having her gone this summer has been a gut wrenching time to say the very least. I also was absolutely amazed to see the two kiddos interacting. And, as a bonus, Aiden initiated a lot of their interactions, from "fist bumps" to "high-bye" (aka. high-fives) as well as blowing kisses over the computer. To me, with his developmental issues, and yearning to see her sweet face again after all we've been through this year, this absolutely and 110% MADE MY DAY. Sophie's dad and I may not always get along, but he and his mom get major brownie points for facilitating this interaction. Thank you.
My thought for a Tuesday... Tonight I want to pray for all the parents out there. I want to pray that God come between you and your ex and/or current spouse and intervene in a way that is positive for the children. May you always remember that there are precious little hearts and minds at stake in every parental situation and may you be blessed in knowing that you have the power to enrich them. May every day you be granted peace in knowing that you made the best choices possible with the day you have. Today is all we have, people. You can plan for tomorrow, but LIVE LIFE FULLY TODAY.
Dear God,
May we find peace in knowing YOU more. May we share you with our children through our example so that our children will see the love you first gave to us through your Son, Jesus Christ. And tonight, may we remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." God, we try to make the best decisions for our children and ourselves TODAY. And, in spite of our mistakes, you remind us continually that you've got us covered for tomorrow without us having to do anything to earn it. God, help us to have peace in knowing that you've got our back, and that you will give us the stamina to push through another day and live it fully through your strength and love.
Amen.
Goodnight friends,
J
Friday, May 13, 2011
For Aiden: Epilepsy Info, IVH Information, and a Preemie Prayer!
The amount of bleeding varies. IVH is often described in four grades:
- Grade I - bleeding occurs just in the germinal matrix.
- Grade II - bleeding also occurs inside the ventricles.
- Grade III - ventricles are enlarged by the blood. (ßAiden’s Grade)
- Grade IV - there is bleeding into the brain tissues around the ventricles.
There has been various therapies employed into preventing the high rates of morbidity and mortality, including diuretic therapy [4], repeated lumbar puncture [5], streptokinase therapy [6] and most recently combination a novel intervention DRIFT (drainage, irrigation and fibrinolytic therapy). DRIFT has been tested in an international randomised clinical trial, although it did not significantly lower the need for shunt surgery, severe cognitive disability at 2 years Bayley (MDI <55) was significantly reduced [7]. Repeated Lumbar punctures is used widely to reduce the effects in increased intracranial pressure and an alternative to ventriculo-shunt (VP) surgery that cannot be preformed incase of intraventricular haemorrhage. The relative risk of repeated lumbar puncture is close to 1.0 therefore it is not statistically when compared to conservative management and does raise the risk of subsequent CSF infection [8].
Good night friends,
Thursday, May 12, 2011
Three Simple Reasons...
“Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” (Ephesians 3:20)
Tuesday, May 10, 2011
Our story
Tuesday, April 26, 2011
Today's Excitement
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| Me and Adam on Easter |
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| Me, Sophie, Adam and Aiden |
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| Aiden, Me & Sophie. Fun times at Easter! |











