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

Aiden Update, the end of an era & fundraising for Histio!

Well li'l man got very sick overnight. My prayer request is that it is just a virus and isn't something more serious. I'm exhausted, I've been up since 3am. I am going to try hard to make it through the day today, but I'm dragging along. The only thing that keeps me going is my fiance, sending me kind words of encouragement through the day. The hope is that this day will be over soon and that I can go home and get some rest. I'm VERY sleepy. I'm not trying to whine, it just is what it is...

Today is the end of an era at my company. We have sold our entire crude oil business (our largest business segment) to another company and today is the last working day for the 10 employees of the new company that remain here. Their stuff is all being boxed up today and is moving out officially tomorrow. I am going to miss all of them for different reasons. It's been great spending the last two years getting to know these people, and in many cases their families as well. It's been a long time coming... the announcement, that came on the heels of the firm being announced Houston's most profitable private compnay, was made a few months back. I just know the employees are ready to move on and that things may be different at the new company, but they do have jobs. That's the silver lining in all of this...

I am also collecting donations for the Hisito Cure foundation today! So far, we're up to almost $200 that will go directly to Hisitocytosis research. I couldn't be more excited! Yay! I will be mailing them directly to the foundation after the event on Saturday. Please contact me now if you want to send a check our way, and get in on the action!

Here's the email I sent...

Sophie and I are going to Galveston this weekend to raise money for the Foundation with a group of patients that are seen by Sophie’s oncologist and his team (Dr. M & Dr. A) at TCHCC. We are asking for everyone we see that day to just give $1 for Histiocytosis Research. Every dollar they earn goes directly to research. They have recently received a small grant from the National Institute of Health that should cover administrative costs, but their research is still very expensive. Right now there is no known cause, and no cure... People diagnosed with Histiocytosis live with it their entire lives, and many die very young.

I just wanted you to know what we’re up to because this is our philanthropic effort, and I think it really could do a lot of good for a lot of kids with Histiocytosis. If you would like to donate, please let me know.

EMAIL ME AT: jodimmorgan@yahoo.com to get involved!!!

Kids, Histio & Fundraising

This has been such an eventful week I couldn't let another moment pass without posting. I have to first update you about my li'l man, Aiden. He is now 2 years 4 months old. I never thought he'd make it past the first month of life, much less to be a thriving and happy two year-old. He has a few developmental problems that have gotten more pronounced over the last few weeks. There is a right food "drag" going on with li'l man. Last night, I got an email from his OT with Project Tyke. Here is what she said.

"Got to see Mr. Cutie this afternoon and boy, was he "on"!  He performed all my motor skill challenges which emphasized him manipulating lids in twisting, pulling, pushing and visually/bilaterally problem solving the containers. (I had just begun saving containers from the kitchen and he really liked finding the hidden toys within.) Worked super hard and just kept trying....Continue to tuck things into pockets and wallets, and have him help to remove them...

I also challenged him to maintain good balance when reaching for items positioned above his head, right and left sides, just a bit out of reach. He became a little annoyed by this but mixed up with running and "stop/go" games, he just pushed through it.... He requires work in maintaining his stance, while engaged in language or learning or using his hands.  It's harder for him to sustain so activities such as yoga, karate I suspect would be harder than activities like soccer or baseball, physically I mean.

He worried me a little bit too. He was demonstrating a big toe drag on right foot.  I'll watch this closely and after talking with one of our physical therapists today, he may end up requiring an orthotic.  Notice at home if occurs at certain periods of day (on weekend). This toe drag may just be some weakness coming through, and so have him play games like toes up and lead into doorways, stairs with right foot to see if we can strengthen. Pretend to make circles/letters with foot ABC's.....Sometimes kids will temporarily look weak "distally" when they are in a growth spurt period.

Anyways, keep up the great work at home and he seems so very happy at his school. He names his friends, is talkative and interactive, such a big boy!!

Any luck locating information about service dogs? D."

So, I responded with…

"I noticed the right toe drag, too, but I thought it was just the CP? I'm not opposed to the orthotic just know that whatever needs to be done, we will heed your recommendations."

 

And, this morning early, she sent me…

"yes of course, with Cerebral Palsy there are the tone abnormalities but not always evident what is tone or weakness....certainly not pulling into position of toe pointing (hypertoncity) but kind of falling in to so the question is low tone (hypo) or weakness. So best practice with this would be to see if can influence his function by strengthening prior to accommodating it with orthosis.   He could also benefit from some kinesotaping for support so that he doesn't appear clumsy if toe dragging persists.  So, I'm "on it" and I'll watch very closely and keep you informed."

 

And I just said, "Thank you SO much"

 

Here I am thinking it's all related to his CP, but it's a real abnormality nonetheless and needs to be monitored. So… here we go again. Pushing ahead with the little guy, though I think he is making progress every day. I don't need him to be some sort of tri-athlete or anything; I just want him to have every possible advantage. And in his case early intervention is key.

 

So now here is the update on Sophie. She has officially lost five pounds. No small feat when you're growing up as well as trying NOT to grow out. Sophie is eating right and exercising and I am so proud of her. Attending a diet/nutrition program at her age isn't what I wanted for her, but it is helping, so I'm all for it.

 

As for the other exciting thing going on in our house, we have a houseguest from another country this week. We have opened our home to a patient who is battling RDD (A version of the Histiocytosis Sophie has). They were desperate to come see Dr. M to get help and to possibly receive a treatment plan because no one in their country would or could help them. Unfortunately, contrary to what a lot of people believe, there is a huge problem with socialized medicine. You have to wait for 6-8 weeks to get an MRI or CT and Dr. M was able to schedule her test immediately. The patient will have a thorough treatment plan soon and I am so blessed that they were able to come here to get the help they need from Dr. M. They also said that in their country if you have a blood disorder you can't EVER be on the transplant list. Can you imagine needing a liver for your dying child and not be able to get one for them??

 

I just hope the best for this patient and all patients coping with Histiocytosis. Actually we are going to go to Galveston soon to assist with a fund raising effort that will directly affect the cancer center where Sophie goes for her treatment. I hope we can raise some money to assist with the research efforts for Dr. M and his team. Every dollar raised goes directly to research so I'm so pleased that we might be able to help, even if it's just small potatoes. Every little bit counts.

 

I am also blessed that my fiance is supportive in this effort. I am so honored that I get to be with a man who is not only willing to help others right along side of me, but doesn't stand on a soap box, pretending that he is all holier than thou. He just acts... simply. He doesn't put the kind and generous things he does all over the internet and make a big announcement about all the nice things he does. He just does them. That to me, is the personification of Christ in the world. That is why I love this man so much! He is humbly serving others and he doesn't even really realize he's doing it because it's just a sincere act. Just who he is. That is why I call him The Awesome Mr. P!

 

Well 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