Our Ordinary Stories

Crazy 2 Weeks

2012-01-23T12:44:00.001-05:00

The last 2 and a half weeks have been absolutely CRAZY! Life has been an whirlwind and its hard to remember everything that's happened (partially because I was super medicated for some of it), but I'm going to try to fill everyone in on what's been going on.

Since Thanksgiving I have been having some pretty crazy stomach issues, which included some pretty major water retention and the expansion of my belly. The first week of January my belly got huge...I mean I looked 9 months pregnant huge and couldn't fit in any of my clothes. I started having a lot of back pain and was just miserable in general. On January 5, I decided to go to the ER because I was in so much pain and Dr Z wanted me to make sure I didn't have some sort of obstruction causing all the problems.

In the ER, they got my pain to at least a manageable level and did some tests that showed I had mild pancreatitus. The ER doctor decided I should be transferred to the clinic and admitted for pain management. After a long day in the ER, I was finally transferred at 3am to the hospital where Dr H is. We thought this was the best idea considering I was supposed to meet with him the next day and then start the chemo regimen that Dr Z had chosen. Boy were we wrong.

Dr H completely disappointed us and we have since decided not to work with him or the clinic anymore. First off, I was so full of medication that I don't remember much of my hospital stay or even the next few days after I was discharged, but I do remember how upsetting Dr H's conversations were. He refused to do Dr Z's treatment, he wanted to do his own treatment and after 2 weeks if it wasn't working he said we would need to discuss hospice care. WHAT?!?!?! I didn't want his treatment I wanted the one Dr Z had explained to me and I am so not in any shape to discuss hospice care!! I am still quite healthy, you know besides the cancer thing...lol (oh, while there, they did remove almost 2 liters of fluid from my stomach which made a huge difference...we learned the fluid build up is a defense mechanism of my body's against my tumors)

So we said good-bye to Dr H and the Clinic on Friday and on Sunday Joe, my mom, my dad and I flew back to Texas. I only vaguely remember flying down here at all, the Clinic had me on so many drugs while there I still felt the effects days later. We met with Dr Z on Tuesday the 10, and I had my first chemo session that evening. It was a LATE night, I finished my chemo at 1am! On Wednesday, I didn't feel very good at all, but assumed it was the affects of the chemo. I didn't sleep at all on Wednesday night, I was up in a lot of pain (my back again) and my stomach had gotten bloated again. By Thursday morning, I was feeling very short of breath and we all decided I should go to MDA's ER.

I got there at 9am and after a little while they got my pain under control again (and I wasn't out of it) and they did a bunch of tests which determined I had a large amount of fluid built up in my stomach again and that I also had some in my lungs and had pneumonia. So it was decided I would be admitted, I just had to wait for a room. I spent 32 hours in the ER waiting for a room, my mom slept in a chair beside me and Joe and my dad slept in the waiting room. That was an awful night. I was in pain a lot and short of breath and had multiple panic attacks. That was the first time I have ever had a panic attack and wow they are not fun.

On Friday, after I got my room, I had 2.2 more liters removed from my stomach and immediately felt some relief in both my pain and my breathing. I spent the next 5 days in the hospital getting IV antibiotics, adjusting pain meds, trying to get my blood levels under control, getting my crazy high blood pressure controlled, and a few other things including a blood transfusion. I am still trying to recover from the hospital stay, I'm still pretty weak and get tired really easily, but every day I'm a little better. Due to blood counts, I had to skip my second chemo session. I ended up getting another blood transfusion and 3 more nupogen shots (shots to stimulate white blood cells). Hopefully, when they check my counts on Tuesday I'll be able to have my 3rd session.

If I have my 3rd session on Tuesday, then we will hopefully be flying home on Thursday and I won't have to be back here until February 6. We're currently working on trying to find an oncologist back in Ohio that is willing to give me Dr Z's treatments. If we can't find one, then I will be moving back to Texas because my treatments are every week for 3 weeks, then 1 week off (so prayers we find a cooperative oncologist are greatly appreciated!).

So that's how the last few weeks have gone. Crazy. We've cut our ties with my original oncologist and the Clinic, got plane tickets and another apartment and came to Texas with 24 hours notice, I've started my chemo, had pneumonia, was hospitalized twice, had 4 liters of fluid removed from my stomach (its stayed away so far, which is a small sign the chemo is working), and am waiting to find out where I will be getting my chemo from now on. Phew...I think I need a vacation.

Past Due Blog Update

2011-12-17T15:24:00.001-05:00

So, I am way past due on updating my blog, and a lot has happened since my last post. The amazing trial I was so excited to be part of turned out to not work for me. 2 weeks ago my scans showed small amounts of growth in my tumors, but Dr Z couldn't be sure of the growth was before or after I started the new chemo, so I was to continue with the chemo for 2 more weeks & then re-scan.

During that 2 weeks, I became very sick. I had terrible stomach cramps that doubled me over in pain and I was constantly nauseous. I could barely eat or drink anything. I ended up in the ER on December 7 for the pain and for dehydration. Dr Z decided then to have me hold my chemo meds until I came down to Texas to see him (about a week). Once I stopped the meds, my stomach issues went away almost immediately.

This trip my dad came down with me. I had my scans on Thursday, and when we met with Dr Z yesterday he told me the trial was not working. All of my current tumors have gotten larger, my lymph nodes are larger and I have some new tumors that have popped up. So, I have dropped out of what I believed was going to be my miracle trial. Now I am not discouraged, I still believe I will get my miracle, I just may have to wait a little while longer.

What's the plan now? I am going to be doing a more standard chemo regimen, not a trial. I have had 2 of the 3 drugs I am going to get before. One is carboplatin, which I had last spring and we know has an effect on my cancer. Dr Z's current thought is that by doing a treatment we know will have a positive effect we can improve my status and then try another trial later on, rather than try another trial now and possibly let my cancer continue to get worse if it doesn't work. I completely agree.

One awesome thing about going with just a general chemo treatment is that I will be able to receive it in OHIO! I will still be under Dr Z's care and will have to come back to Texas every 4 weeks or so for scans and a check-up, but will spend most of my time at HOME! I am incredibly excited about that!

So tomorrow I say good-bye to my Houston apartment when we leave for the airport and I won't be returning to it :o) It has been great spending time with my dad this trip and I'm glad he was able to come. I think it may be a battle from now on who gets to come with me...its like a mini vacation for my family members...haha!

A Timeline (Part 3)

2011-11-15T22:17:00.000-05:00

Here's the final wrap up of the last year...

June 2011
*June was blissfully uneventful for the most part :o) I was watching the kids again and was even doing the things I had missed around the house. Julianna and I went berry picking and canned homemade jam. We spent some weekends at the camper. And life was good!

July 2011
*July 4th weekend, we went to the camper and had both our families over for a picnic. It was then that my back pain returned with major vengeance. I was in almost as much pain as I had been 9 months previously. I could barely walk or move.

*Dr H scheduled me for another long MRI (4 hours!), this time including scans of my pelvis. He put me back on pain meds until the results came back, but they didn't seem to help much. A few days later when I met with him he gave me the news that there was a fairly large tumor in my pelvis and it was pushing on my sciatic nerve (finally a source for my pain!). I was scheduled to see a surgeon for a consult.

*I met with Dr L (the surgeon) on Monday, July 18 and after seeing my pain and looking at my scans, he scheduled me to have surgery just 3 days later! I was so thankful for him being able to get me in so quickly. The day before my surgery, I was in so much pain I pretty much just layed on my parents couch crying all day and counting down the minutes between pain meds.

*July 21, I had surgery to remove the tumor from my pelvis. Basically, they cut clear through the left side of my rear end to get to it. I would go through 10 c-sections again before I would ever want to have the surgery to remove that tumor again. It was an extremely painful recovery. I spent 5 days in the Clinic recovering & then was transferred to a rehab facility.

*While in the rehab facility, I was the youngest resident by at least 50 years...haha! I had 30 minutes of physical therapy each day. By day 3 I had decided it was silly for me to be there and I was ready to come home. I was told I could go home the next morning :o) Unfortunately, Joe got a call from Dr H shortly after that and we received the news that I had multiple new tumors show up in my last scan and that my cancer was again getting worse. I was so upset I didn't give anyone a chance to keep me there. I told them I was going home right then. I hadn't seen my kids in over a week and I just wanted to be home with my family. I was discharged within 30 minutes.

August 2011
*I spent August trying to recover from my surgery (it was awful!) and starting radiation therapy on the parts of the tumor that could not be removed. Joe also got things rolling on getting a second opinion on my treatment at MD Anderson.

*August 25, I started having back pain again. This time I had a large knot on my back that was causing the pain. It felt like a really tight muscle knot and when it was rubbed it would ease a little. After some completely sleepless nights Dr H ordered another MRI of my back. This one showed I had a new tumor next to my spine and that my cancer was spreading quite quickly up my spine. So radiation to my back was added to what I was already getting on my pelvis.

*By the end of the month things were all set for Joe and I to travel to Houston, Texas to get my second opinion at MD Anderson the beginning of September.

September 2011
*I finished radiation therapy on Sept. 7 and Joe & I flew to Texas on Sept. 8th. September 9th, I met Dr Z for the first time. We instantly liked him and were really excited about everything he had to tell us.

*After lots of testing, Dr Z decided on a trial for me and things moved pretty quickly. We had to get an apartment, my parents flew down to help out, and I sadly wasn't able to return to Ohio to spend time with the kiddos. I started chemo and thanks to the steroids I got as a premeds I started feeling amazingly better!

*During all this time, a few things were discovered about my eyes. It is thought that I have carcinoma related retinopathy, BUT Dr S is so unclear about things that we still aren't exactly sure what is going on with my eyes.

October 2011
*I continued with chemo during October & dealt with periods of my severe back pain. We still don't know what is causing the back pain, but it seems to always be the worst at night, and so far the only thing that helps it is steroids, which none of the doctors want me to be on.

*Joe and Erin brought the kids out to see me for a week and I couldn't have been a happier! We took the kids to the zoo, and shopping, and we just had a wonderful time. Watching them leave for the airport was so hard.

*October 21, I met with Dr Z to go over the most recent scans & I learned that the trial I was on was not working. The cancer was still slowly growing. I was scheduled for an appointment the following week to find out a new plan of attack.

*October 25, I was put into a new trial and just a few hours later my mom & I were on a plane back to Ohio for a short trip. It was so nice to be home! It was even nicer to see Julianna's face when she woke up the next morning and found mommy was not in Texas!

*Here's where my miracles really start rolling in. A few days later, on October 26, Dr Z called Joe and told him they were 99% sure they now had found the primary source of my cancer. I am now diagnosed pancreatic neuroendocrine tumors (PNET). The good thing about that is that there is a specific treatment for it! Even better was that a trial just for PNET opened that day and I was accepted! And it included that new chemo drug that had been approved in May! This drug (everolimus) has an 86% success rate at reducing the size of PNET tumors and a high percentage of patients reach remission very quickly. I was thrilled!

November 2011
*Erin & I flew back to Texas and I started my new trial on November 4th. I love that this chemo is all pill form. No IV's or ports for me baby! I alternate between 2 different chemo pills each day. Its so simple. It also doesn't have the extreme side effects as the chemo I had last winter. So far, I still have my hair :o) Its thinner, but no balding! I also, have an incredible appetite...no nausea or sickness!

*I made another quick trip back to Ohio last week and got to attend the fundraiser my family & friends threw for us. Then my mom and I returned to Texas. This time we brought Julianna with us. She was having such a hard time being away from mommy that we decided it was in her best interest to be with me for a little while.

So that's where we are as of right now. We are planning on being here in Texas through December 6th when I have some tests and scans scheduled, but after that I shouldn't have to be down here except for a few days a month. I can't wait to see how well this chemo is working! I know in my heart that God has big plans for me and that this cancer is just a bump in the road.

I hope the last few posts haven't bored everyone, but I thought it would be easiest to just do a recap and catch people up in case they had missed anything. If you want anymore in depth details you can click here and read all my cancer related posts.

A Timeline (Part 2)

2011-11-14T17:44:00.000-05:00

Here's some more about how the last year has gone...

January 2011
*A few weeks after my first round of chemo I had repeat scans done and miracle #1 appeared...a mass that had shown up on my spine before chemo was completely gone...GONE! The doctors were amazed. I continued with chemo sessions every 3 weeks and scans every few weeks.

*I went in for a routine CT scan on January 21 and instead of heading home after the scan I ended up admitted to the Clinic with a pulmonary embolism (a blood clot in my lung). I had no symptoms and felt great, but was so thankful it was caught! I started blood thinner injections and the PE was resolved by my next scan. Unfortunately, I still have to do twice daily blood thinner injections...not fun.

February 2011
*On February 5, my sister, family & friends held a benefit in my honor to help raise money for our medical expenses. I was completely overwhelmed at the success of the event! They did an amazing job and I was so touched that so many people came out to support me! I have never felt so much love.

*The chemo began taking a harder toll on me as each session happened. I would feel really crappy for the first week after (no appetite, really tired & just completely drained), I'd feel slightly better the second week and the third week I'd feel great...unfortunately I had chemo every 3 weeks, so it was a never-ending cycle.

March 2011
*I had a repeat bone marrow biopsy to check the progress of my cancer and was completely floored when it showed I was in "nearly complete" remission. I was given the option to either stop chemo and just monitor the cancer or I could opt for 2 more rounds and see if I could get complete remission. I opted for 2 more rounds. Dr H said he still couldn't believe how well I was responding to the chemo. He was so pleased.

April 2011
*After noticing some hearing changes, Dr H switched the type of chemo I got for my last round. I still have some hearing loss(a side effect of cisplatin), but overall it is very minor. I finished my last round of chemo on April 7 and then it was just a waiting game...3 weeks and then a repeat biopsy to check for complete remission.

May 2011
*May was a busy month for us medically. On May 5th, I went to the Clinic to see Dr H and get the results of my biopsy. It showed I was in COMPLETE remission! Since then, we have started to doubt whether I was actually in remission. There were no scans of my tumors to check them and now we know they were obviously still there. Another important event took place on May 5, but we had no knowledge of it or that it would become important to me...that's the day that my current chemo (everolimus) was approved to treat pancreatic neuroendocrine tumors.

*May 10th, Will had his second heart cath since his birth. The doctors tried to balloon his aorta to make it bigger, but unfortunately it wasn't successful (he will see his cardiologist, Dr Awesome, in January to determine what our next step is, right now its just monitoring him).

*Just 2 weeks after getting the great news about my remission, I had a few days of the same severe back pain I had experienced in the fall. Dr H immediately scheduled an MRI of my back for me, it didn't show anything, and we were relieved. We would later learn it was because the tumor causing the pain wasn't in my back, but was in my pelvis.

*May 25th, we left for a MUCH NEEDED family vacation to visit friends in South Carolina and then to spend a week with my family at the beach. It was the first time we felt like a normal family in a very very long time.

(To be continued again...)

A Timeline (Part 1)

2011-11-14T02:16:00.001-05:00

My amazing friends and sister organized and threw yet another successful fundraiser for me and my family this past weekend. I am constantly in awe of the generosity and care that people have shown us during the last year. The money from the fundraiser is going to make it possible for me to continue to fly to Texas for appointments and treatments. YAY! I am going to write more about all those wonderful people and what they've been doing for us, but today's post is for all the people that asked me this weekend about exactly how the last year has gone and how I am feeling about where I currently am (in treatment and life).

So here's a hopefully easy to understand timeline of the last year (including some lovely parts that I know are indeed answered prayers), since there's so much info to tell, I am going to break it into several posts.

September 2010
*The normally sporadic back & leg pain (along my sciatic nerve) begins to increase and occasionally interferes with daily activities.

October 2010
*I see a new primary care doctor and she suggests physical therapy for the pain. I begin PT, but the pain just continues to worsen. I start some pretty heavy duty pain killers, but they don't work very well or for very long.

November 2010
*The pain got so bad I was no longer able to take care of the kids. I would average about an hour of sleep per night. The day after Thanksgiving, I ended up the ER for the first of almost a dozen visits for severe pain. I continued with PT, but still things got worse.

December 2010
*After much pushing we were finally able to get me an MRI of my back (this was after my PCP told me she wouldn't give me anymore pain killers and that she was concerned I might have just been a drug seeker...oh yeah she totally went there). The MRI showed some minor back issues (a slightly herniated disc and degenerative disc disease), but I was told by the back doctor (no clue what his name was) that they were not severe enough issues to be causing me this much pain. I then received a call from my primary care doctor (at 7pm on a Thursday night) that the MRI showed I had abnormal bone marrow all through my back and that it was often a sign of cancer, but try not to worry until I can get more information. Not worry???

*I met with a local hematologist and had a bone marrow biopsy. The phone call I got with results was shocking to say the least. I was immediately sent to the Clinic with an initial diagnosis of Harry Cell Leukemia (Dec. 18).

From Dec 18-Dec 25 I have very few memories. I only vaguely remember any of the hospital stay, so the next events are what people have told me happened.

*I had a gazillion tests done over the first week I was in the Clinic, more MRI's, PET scans, CT scans, another bone marrow biopsy and other tests. I slightly remember having a pretty nasty fall one day and hitting my head really hard, which didn't go over well with Joe or my mom considering I was not supposed to be left alone.

*It was determined that I did not have leukemia and I was transferred to a different floor of the hospital and Dr H became my oncologist. Dr H is definitely the first of some answered prayers. It was decided that I had Neuroendocrine cancer, but they had no idea where it was coming from and were shocked that it was in my bones. None of the doctors there had ever seen some with NETS in their bones. I remember being told later on that they contacted multiple other hospitals and doctors for consults and no one was able to give any information about my rare NETS.

*On Dec. 23 Dr H decided to start me on chemo. I later learned that all the other doctors told him the chemo wouldn't work on NETS (it usually doesn't) and that it was probably a waste of time. Dr H didn't listen and the first of all the prayers was answered. After just one dose of chemo, Joe and my mom said I improved so drastically they were shocked. By the 3rd day of chemo, I can remember a lot more. I was in so much less pain.

*Dec 28, I was discharged from the Clinic to go home. The chemo had made such a difference in me and from this point on I can remember everything fairly well.

*Dec 31, we celebrated Christmas and New Year's together as a family :o)

(To be continued...)

Quick Trip

2011-11-03T03:50:00.000-04:00

We're baaaack. Look out Texas, I have returned! This time I feel better coming down here. I am coming down here with a game plan (mostly) and that feels so much better than when I came back in September not really knowing what would happen. Its also a lot easier coming down here this trip because it is a very short trip, just a few days.

I am supposed to be packing a ton of appointments into my short trip, but as of this very minute, tomorrow's (I guess actually "today's" since its 2am) schedule is still blank. It should be filled with all the scans this new trial needs me to have before chemo begins. So, it looks like I will be making lots of phone calls in order to get them all done so I can start the trial on Friday.

Friday's schedule had a new appointment added to to it today, I am going back to neurology to have my right leg checked out (my left leg was the one affected by my surgery in July). While I was home, the back of my right leg (from my rear end all the way down to my 2 smallest toes) went numb. The numbness is weird feeling, but doesn't really bother me. What did bother me was the excruciating pain I was having down that leg as well. I really feel it is some sort of pinched nerve because sometimes I can just shift positions and the symptoms vanish almost instantly.

Saturday, Erin and I get to just hang out with nothing to do. Unfortunately, the weather is supposed to be cold the next few days or we'd probably hang out by the pool. Then, on Sunday, we'll return home, me for just a few days. Due to me being a not so smartypants, I didn't buy the travel protection for our plane tickets when I originally booked them last Thursday. I didn't feel we needed it because I knew I was only going to be here for 2 days and then wouldn't be back again for a month. Then the trial I am in changed and so did the plans.

Technically, I could stay here in Texas and not return home since I will have more appointments each week for the next month or so, but since I didn't get the travel protection, it was going to cost me as much to change our flight plans as it would to just get another ticket for me for next week (I'll only need a one-way ticket next week). As promised to Julianna before my trial changed last Friday, I am coming back after just a short trip, I'll be there a few days and then be Texas bound mid-week.

Speaking of Julianna...the past week at home with my kiddos was A-M-A-Z-I-N-G!! I'm not sure I can even convey how awesome it felt to feel good and be playing with my kids in our own home, and doing things like taking Julianna to school, and going grocery shopping, and loading and unloading the dishwasher (yes, even that had a wonderful sense of normal that made me smile), and putting the kids to bed at night and saying bedtime prayers, and marveling in all the new things that Will can do by himself (some good, some not so much, lol)...it was all so fabulous. It has been so long since I felt good while in my own home (my symptoms all returned July 4th weekend) and I stinkin' loved it. I cannot wait to get home and stay home.

Now that this post has become just a rambling of sorts, I'll put an end to it. Hopefully, all the appointments I am cramming in will bring some great news...I love sharing good news, and I feel from this point on, there will be lots of good news. :o)

Ta Da!!

2011-10-27T21:04:00.000-04:00

I was going to give tell everyone my incredibly wonderful news, but changed my mind.

KIDDING...please don't go all torches and pitchforks on me...heehee!

So today, I lined up plane tickets for my first chemo next week, put in notice on my apartment for next Sunday & made a bazillion phone calls and changed appointments to be able to go to them while I was there. And then Dr Z called Joe...and then Joe called me...and this is what he had to say...

They are now POSITIVE I have pancreatic neuroendocrine cancer...that alone would be enough good news...BUT WAIT, THERE'S MORE!

The trial that Dr Z really wanted me in but that wouldn't open for at least a month, OPENED today and I GOT IN IT!!! Now this is pending insurance approval for 1 of the meds, but who cares, I will make it work! I got in the pancreatic cancer trial that is using 2 meds that on their own have had amazing results, and now I will be trying both at once to see if they give an even better result.

HOW AWESOME IS THIS?!?!?!

Last night, part of my prayer went something like this "Dear God, put me in the trial that is best for me. I would really like in the second one, but know if you want me there, you will do it when you see fit, whether its in 1 month or 10."

He apparently decided I didn't even need to wait a month. My miracle is happening! GOD IS GOOD!

Ok, now that you've read my fantastic news, you can all start jumping up and down and yelling. Oh, you mean only I was that excited???

More Sure Than Ever

2011-10-26T14:24:00.001-04:00

Lots to tell! First off, I am home from Texas!!!! Its only for a week, but when I go back next week, I'll be packing up our apartment and only staying for a few days. Here's why...

Yesterday, when I met with Dr Z, he had a number of things to tell me besides what my new trial was going to be. The first amazing news he had was that they are almost certain they found the primary source of my cancer! That is awesome because until now it has been a mystery and without knowing the primary source it couldn't be treated very specifically. Dr Z, the radiologist & the pathologist all agreed on what my PS is...my pancreas.

There are 2 types of pancreatic cancer. The first is what most people know about (the one that Patrick Swayze had) that has very few treatment options, is very aggressive & doesn't allow much "time" for the patients (Dr Z said the average expectancy of a pancreatic cancer patient is only 4-6 months). LUCKILY, I have the second (very rare) type.

My cancer is still neuroendocrine, but neuroendocrine cancer (as I just recently learned) actually begins as a normal cell from another part of your body (usually the lungs) that becomes cancerous and moves to a new location in the body. In my case, some of my pancreatic cells became cancerous and instead of staying in my pancreas moved to my bones and became neuroendocrine cancer. Until now, I have been treated as though it started in my lungs since that's usually where it starts and we didn't know where it started. That would explain why I didn't stay in remission and possibly why the first trial didn't work. Pancreatic neuroendocrine cancer has a standard of care, which means it has a treatment for it!

I am still going to do a trial instead of the treatment, and I'll explain why. The trial Dr Z really really wants me in doesn't start for at least a month. And it uses the same drugs as the standard of care for my cancer along with another one. But he didn't want me sitting doing nothing for a month or more and just letting my cancer grow, so he put me in a different trial (that may also work) and put me on the list for the pancreatic neuroendocrine one. If my new trial isn't working in 1 month, he'll pull me from it and put me in the one he really wants. If it is working, then I'll just keep going with it (why quit something that works).

So my new trial only requires 1 day of chemo every 28 days & blood draws once a week (which they already told me I can do here at the Clinic). The other med in the trial is a pill and I just take it daily at home. What does this all mean for my traveling? It means I won't be living in Texas anymore!!! I will fly there once every 28 days for chemo and then come back home! I am leaving next week to go down and pack up the apartment and have my first chemo session, it will be a nice short 4 day trip. When I go back the beginning of December for my next round, I will have to be there a few days also because Dr Z will redo all my scans and tests and see if the treatment improved me at all. If it did, I keep going with it. If it didn't, I switch to the new trial (not sure what its schedule is, but Dr Z thought it was a once a month thing also).

I had several people tell me their prayers for the last week or so have been that I would get to come home to my kids (my mom was so disappointed when we found out the last trial didn't work and we might be staying there longer than we thought), this new trial got me home even sooner and lets me stay here longer :o) So prayers were most definitely answered. And I have been praying for months and months (almost a year now!) that someone would find the primary source of my cancer and finally someone did. Thank you God for sending me Dr Z!

I have been so sure that going to Texas was where I was meant to be and that it would be there that I would find my miracle. Now, I am more sure than ever.

MY KIDDOS!!

2011-10-23T11:06:00.000-04:00

Last Sunday, I wasn't the only one super excited for a long awaited reunion.

I could barely peel Julianna off of me in order to hold Will :o) It was so wonderful to see my kiddos again (it had been over a month and a half!)...I of course was excited to see Joe and my sister too, but seeing my kiddos was the best!

On Tuesday, we all went to the Houston Zoo. And everyone enjoyed it. The weather was gorgeous for going to the zoo...only a high of 75!

On Wednesday, we drove to Galveston to see the Gulf, but it was freezing that day, apparently the weather man was wrong when he said 70, because WeatherBug on my phone said 62 and it was SUPER windy! I did put my feet in the water, but we didn't stay very long.

Sadly, Thursday and Friday were spent at the hospital having testing done and meeting with Dr Z, so we didn't go do anything fun, but we did uphold our Halloween tradition (another post).

Saturday, morning we went to breakfast and then it was time for Joe, Erin & the kids to load up and head back to the airport. Julianna was very good about the whole thing until I started buckling her into her carseat. At that point it was an absolute meltdown, her first, then me. I knew saying good bye would be hard, but even trying to prepare myself didn't work. I sobbed like a baby.

I'm holding out hope that when I meet with Dr Z on Tuesday I will have a break before I start a new trial and can come home for a break. He did also tell me that he will try his hardest to make sure I get to go home for Thanksgiving. I really like Dr Z :o)

Waitin' on Tuesday

2011-10-22T13:51:00.000-04:00

Although I received quite a bit of news yesterday that could really bum a person out, I am far from bummed out. I was not scheduled to get any of my testing done until next month, but Dr Z is doing some research of his own and decided to include me in it. That meant instead of waiting 2 complete cycles for my restaging, I would have it done at 1 month. Thank goodness I did.

The scans I had done on Thursday showed a few things. It showed that most of my cancer is stable (hasn't gotten worse, but hasn't gotten better either). It showed that the radiation I had on the tumor on my back (last minute radiation before we came to Texas) almost completely got rid of the tumor, it was barely visible on the scan. Woohoo! It also showed that one of my lymph nodes has gotten larger (more cancerous) and a small spot of fluid (not cancer, but cancer related) on my pancreas has significantly increased in size.

So, Dr Z decided that since a few things were getting worse, he didn't want to waste time continuing my current treatment if it wasn't working 100%. He is currently talking to the pathologist who gave a recent report (he had a few questions for him) as well as a few other doctors (there are some questions about my pancreas) and then he will decide what my next treatment will be and I will find that out on Tuesday.

Until then I am already 1 week into my 2 week wash (the time it takes to get all of the chemo out of my system before they can introduce a new one) and it may take 2-3 weeks for insurance to approve a new trial. We knew there was a chance going into clinical trials that they may not work and it may take several tries to find one that does, so we're not really shocked or disappointed. The disappointing part is that our stay here in Texas has now definitely been extended at least another month. And there is still the chance that depending on what trial I am in I could have to stay down here for all my treatments.

We're praying for a fabulous new trial, quick insurance approval, and a trial that I can also get back at the Clinic.

I'll be posting some fun pictures from this past week with the kiddos later :o)

The "Eyes" Have It!

2011-10-07T08:47:00.000-04:00

Although we're still waiting on the results of my spinal tap from last week, yesterday at my appointment with Dr S I found out my eyes are stable. That means my vision is not getting worse right now and there's no rush to start a treatment. YAY!!! Some excellent news! Also the treatment Dr S was going to suggest for me right now was a once a week IV steroid and it just so happens that I get an IV steroid once a week before my chemo...perfect! She said that works out great.

It still looks like I do have CAR (carcinoma associated retinopathy), but they haven't been able to identify what antibody I have (my body produces antibodies to fight my tumors and they just happen to also fight my retinas). She actually thinks I may have a so far unidentified antibody. Some how it wouldn't surprise me if I have something no one else has ever had! I could be ground breaking...haha!

Thanks again for all the prayers and good thoughts! Love you all!

A Week...A Month

2011-10-05T23:22:00.000-04:00

This is the hardest thing I've done. Not the dozens of doctor's appointments, or all the scans, IV's & bloodwork, not even the chemo. Being away from my family is the hardest thing. It's been a week since I've kissed my husband and a month since I've hugged my kids. Will was 17 months old when I left and now he's 18 months old. I've missed Julianna's entire first month of preschool.

I think I would seriously go crazy if it wasn't for Skype. I can't wait to see them on the computer every day and hear Will's "mama! mama!" and see what kind of a mood Julianna is in (some days she'll talk my ear off and other days she could care less if she talks to me & I have to pry a conversation out of her).

It gets even harder when I hear that they are sick :o( Both kiddos are on antibiotics, Will because he's on the verge of an ear infection and Julianna because her cold has started making its way into her lungs (surprise surprise...gotta love those preemie lungs). She's also had a temp the last few days. This is the picture Joe sent me yesterday...he said she spent almost all day on the couch.

Will however does not let something like a silly cold and ear infection stop him. He was up and playing all day and watching Toy Story in "Julianna's chair" (one of his favorite seats). Joe also said he would periodically bring Julianna toys to play with. Such a sweetheart!

This is also hard on my mom. She has made the sacrifice of moving to Texas with me. She hasn't seen my dad in a week and that's the longest amount of time they have been apart in 34 years of marriage. We're looking at at least 7 more weeks here with the possibility of up to 7 months (if that's the case I may need some volunteers to come live with me to give her a break!)

As far as medical things go, I see Dr S tomorrow and should finally get some definite answers about my eyes and the treatment for them. I also have my second round of chemo on Friday afternoon. Its amazing how much less I dread chemo when it isn't as harsh as it was last winter. I have also ditched the crutches for good! Woohoo! And I'm not even walking with a limp! Now I am working on building up my stamina again. My current goal is to be able to walk to the grocery store down the street (0.3miles...I know its not far, but I'm a weakling still and I'm afraid I could get there, do the shopping and then not be able to make it back...haha!).

As always, thank you everyone for your prayers, good thoughts & vibes. Every one of them is greatly appreciated!

What's Been Happening

2011-10-03T05:57:00.000-04:00

I know its been over a week since my last post, but I have been one very busy girl! My mom and I are all settled into our temporary home. Its a cute little apartment that has everything we need (except for groceries and our clothes). Its also fabulous that it has a shuttle to the hospital. If we want to go anywhere other than MD Anderson though we have to take a cab, and they are not cheap! So we have tried to limit our cab rides. Here's a few pics of our temporary home :o)

Our kitchen

The living room

The dining area and door to our balcony

Without having a car here we've had to find some alternatives for getting things we need. Amazingly, we found a grocery store that delivers! You place your order online and then pick a delivery date. Even better is that they were having a special we were able to get that means we'll have free delivery for the entire month of October.

As far as the medical aspect of our stay goes, I had my lumbar puncture (spinal tap) on Thursday and it wasn't bad. I barely felt a thing, thank goodness! I was pretty worried about it. Unfortunately, one possible side effect of it is back pain, and that just happens to be the only side effect I'm experiencing, but add that to my current back pain and I had a pretty miserable time.

I had 2 days this past week where my mom and I spent more than 13 hours at the hospital. The first was Tuesday. My blood counts were really low (due to the cancer being in bone marrow again) and I had to have a blood transfusion. We got to the hospital that day at 8am and left at 9:30pm. I started my chemo this past Friday and that was our second extremely long day (7:45am-9:15pm). My third drug was finally approved thanks to Dr Z changing the wording in my diagnosis just slightly. I will have chemo each Friday (only 1 day a week) for 3 weeks and then have the 4th week off. Then the cycle repeats. There is no set time for how long I will get this chemo. Since its a clinical trial, they are still working on finding correct dosage and length of administration. The hope is that with cooperation from the Cleveland Clinic I will be able to come home and receive treatments there after my first 2 cycles. I would still need to fly down here once a month to see Dr Z, but that would mean I could be with my kiddos rather than staying here in an apartment.

I was excited to learn that the drugs I am getting this time (although still very strong) are less harsh than the ones I got last winter. They have fewer side effects (I haven't had any so far...fingers crossed!), and the side effects they have are not as severe as the ones from the drugs I had before (no risk for hearing loss, hair loss should be minimal, nausea is less severe, etc...).

I am still doing testing for my eye sight. I see one more specialist tomorrow ( a retina specialist) and then hopefully will finally have a definitive diagnosis on my eyes and a plan for treatment. Dr S has been working with a doctor at the Mayo Clinic for my case. They apparently found a certain antibody in my blood that is caused by cancer and it affects the eyes (this is my understanding so far) and this particular doctor is the one who discovered this antibody so he's an expert. I am hoping to know more when I meet with Dr S on Thursday.

This week is another busy week with appointments every day except Wednesday. I feel great after my first round of chemo and I am praying that continues! I'll keep everyone updated. :o)

Coming Together

2011-09-24T06:30:00.001-04:00

Things are finally starting to come together.

The last 2 days have been really rough. I started having really bad muscle spasms in my back and stomach (bad as in curled up in a ball crying when they would happen). I spent all of Thursday night sitting on the couch watching TV propped up by a million pillows because they were so bad I couldn't even lay down in bed to try to sleep. When I went to my first appointment yesterday, they got so bad Joe had to get me a wheelchair and took me to supportive care (the department that helps patients with pain or any non-chemo related issues).

I was crying and a complete mess. They gave me an injection of morphine and an anti-inflammatory while I was there, and after 20 minutes I was feeling much better. I left with 2 new meds, an anti-inflammatory and a muscle relaxer specific for spasms. I slept most of the afternoon and evening and then from 9:30 to 5 this morning! I feel amazing after all that sleep! And the best part is that I haven't had any muscle spasms!

So my meds have finally been worked out as far as pain goes. I hate that I am taking so many medications...4 just for pain & spasms (I normally refuse to take meds, I just don't like to take many) but this time I don't care because they are actually working!

I'm excited that we are going to pick my parents up from the airport this morning. I can't wait to see some family other than through Skype. My dad is only staying through Wednesday, and then he and Joe will fly back home, but my mom is going to be staying with me for at least the next 2 months. We are moving into our apartment tomorrow, I can't wait to be out of a hotel room. The apartment is super nice, but rent is so much higher here than back home. One of the main reasons we chose it was because it has a shuttle to and from the hospital and to the grocery store (my mom and I won't have a car here). It's also great because its set up for patients so it is completely furnished and stocked with "everything but your clothes".

I still have to get a spinal tap done (we had to cancel yesterday's appointment due to being in supportive care) and we are waiting on pharmaceutical approval on 2 of my chemo drugs (if we'll get them free, our insurance approved everything except those 2 drugs), but otherwise I am tentatively set to start treatment on Friday. I'm happy to get started and get this all over with, but I'm not looking forward to months of chemo and being away from Joe and the kids. We were able to get 2 free round trip tickets on Southwest for me to use anytime between now and the end of December, so hopefully I'll be coming back for visits soon!

All in all things are finally coming together and I am so glad! Thank you so much to everyone that has been praying for us, sending us love, good vibes, and any other good thoughts! I still believe this is where I am meant to be and that Texas is where I am going to finally kick this cancer's butt!

Making Plans

2011-09-22T02:09:00.000-04:00

I hate making plans when you really have no idea what's going on, but that seems to be the way things go around here. So we've started making plans.

We will not be flying home on Saturday like we had originally planned. I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning. I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP. Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free). At that point I will probably start my treatment next week.

So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do. My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work. We've extended our hotel stay and our rental car. We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months. And we need everything solidified before next Wednesday when Joe and my dad will fly home. We're making these plans in the hopes that everything doesn't fall through.

Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses. That means I have very little vision loss so far. Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.

Some other possible good news happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could be home for them! I would just have to fly out here the beginning of each cycle to be evaluated.

And so we keep making plans, not really knowing what exactly is going on.

This is Where I'm Meant to Be

2011-09-17T16:09:00.001-04:00

My last update talked about Dr S and my possible miracle...well, it didn't turn out to be the miracle I hoped for (there had been a teensy weensy itty bitty chance I had been misdiagnosed and had an auto-immunne disorder rather than cancer...too bad that didn't end up being the case!). But seeing Dr S was still a great thing. It turns out I have carcinoma associated retinopathy (CAR).

Basically, CAR is the result of someone with cancer producing a certain type of antibody that attacks the retina and eyes, eventually causing blindness (its very rare...go figure!). The good news is that Dr S is hopeful that since I'm young (this usually only occurs in older people) and it has been caught at a very early stage (I have minimal vision loss so far) that treatment will stabilize my eyes and keep my vision from getting worse.

The bad news is she may want to start treatment right away which means I may not be coming home between my consult & when I start chemo :o( I'm obviously going to do whatever she wants me to, but it will sure be hard to not come home & see my kiddos.

I am still in the clinical trial, as long as insurance goes through. I meet the requirements to get 2 of the 3 chemo drugs free, so I'm hoping for that, then insurance would only have to pay for one of them and my standard of care. We'll know more this week after another eye consult & testing, a spinal tap, meeting with Dr S again and finding out about insurance. So, I'll update again when we know more, but I know this is where I am meant to be.

Please keep praying!

Miracles on the Horizon!

2011-09-15T00:01:00.000-04:00

There is still so much I can;t tell you right now, but here's what I can.

As of right now I am scheduled in a clinical trial! The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved. Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week. Then back for 3 weeks off for 1. This would be for at least 4 months. That's a lot of time away from home :o( But we've alreafy started coming up with a plan if thats the way things go.

Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer. To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist. But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House" We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it. She found out I am having a lot more vision issues than I thought. I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.

So what does it all mean? She had me go get some bloodwork today to check for a host of things no one has ever checked for. She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!). Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight. Miracle #1! My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight! Best case scenario I don't want to share just yet. It has a slim to none chance, but I am holding out hope for the chance. Let's just say it would TOTALLY change my life! And by totally I mean its HUGE!

Right now, we're basically "on call" We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be. But it all hinges on Dr S.

Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!! One less surgery! I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!! But again the biggest news of the day was Dr S possible new theory. Its killing me not to share, but we want to wait until there is actual news to share.

On a kiddo note...I MISS THEM! We skype with them every night before bedtime and it has definitely helped...at least me :o) Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart. But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!

Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day. I really hope when we get back we'll be able to keep clothes on him! Haha! Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more. I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!

Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know. But in the meantime, pray like you've never prayed before for Dr S and my miracle! Thanks everyone!

*sorry for any typos, I'm typing in the dark while Joe is sleeping.

Hello Texas!

2011-09-10T04:13:00.000-04:00

We arrived safely Thursday afternoon, after a few mix ups which included almost missing our plane(even though we were at the airport 3 hours early!) because the gate changed at the last minute, arriving at a different airport than Joe thought (we came into Bush and he thought we were coming into Hobby) and trying to get a rental car since we were at a different airport. But everything worked out and we are here!

We met with Dr Z for my consult today and basically he scheduled some testing for me on Monday and I will see him again on Tuesday to hopefully get a plan of action. He did say some things that sounded promising (about my health and type of cancer), but I'm not going to share until I know more and understand them for sure.

So Joe & I have the weekend to have fun. We're not sure what we're going to do, maybe some museums or something (since I can't do a ton of walking yet). I keep telling him this is our honeymoon. Haha! When we got married, we didn't go on a honeymoon, instead we took our money and bought our first house. At the time, it was an excellent decision and we were so glad we did it. We promised for our 5th anniversary we'd take the honeymoon we missed. Well, this year was 5 years and life had other plans that didn't include an exotic getaway. Even though this trip doesn't include a beach, or room service, or romantic settings, but rather hospitals, testing and lots of paperwork, it is our first trip without the kiddos. Every chance we get we comment about how much we're enjoying our honeymoon...heehee!

And speaking of the kiddos, thank goodness for Skype! Julianna has skyped with us several times each day. Today she AMAZED me and went through all her alphabet flashcards out of order and got them correct! She's such a smartie and I'm so glad I'm not missing out on anything while we're here! We also got to say bedtime prayers with her tonight which was wonderful! Will also loves to chat with us, mostly just blowing kisses :o)

I hope I'll have more info for everyone soon (and really good info at that!). Please keep saying prayers, I really believe I am meant to be here right now and that my miracle is just around the corner!

1 Step Forward, 2 Steps Back

2011-08-31T23:12:00.000-04:00

Yesterday was a bit of a surprising day for us. Starting last Thursday, I began having some pretty bad back pain. It was muscle aches and pains because I could feel all the muscles tense up. I had a knot the size of a baseball form on the left side. I assumed it was because I am now walking on my left leg and using muscles I hadn't used in 6 weeks.

After a few nights were I was in so much pain I didn't sleep at all, a call was made to Dr H to see if he could prescribe me some kind of muscle relaxer. He wanted to see me first and re-evaluate all my meds, so we made the trip to see him yesterday. After he looked at my "knot" he ordered a STAT MRI to rule out a tumor before prescribing me anything.

About an hour after my MRI I got a call from Dr H. The "know was not muscle, it was a tumor. Not only do I have a rather large tumor next to my spine, but it is rapidly growing and the cancer was spreading from just my pelvis up my spine. And did I mention the reason it was so painful is because it resting on a nerve that comes off my spinal cord and wraps around my waist to just above my bellybutton. What's up with these tumors sitting on nerves?!?!?! Not a fun afternoon.

Since we already have everything booked for our trip to Houston, the plan of attack for the tumor had to be quick. So today I met with my radiation oncologist, Dr L and he mapped out a treatment plan And I start radiation on it tomorrow afternoon (in addition to the radiation I am already getting). We are going to pack the whole treatment into 5 days, I'll get my last treatment the morning we leave for Texas. Both Dr H and Dr L believe that radiating this tumor will have the best effect. If it were to be allowed to continue to grow it would begin compressing my spinal cord which would be very bad.

Once again, pain has saved me from what could have been a much worse situation. Although, I would really like for a different symptom next time I need tipped off about something. So that is why my Tuesday was so bad. I feel like I take one step forward and cancer kicks me and sends me back 2 steps. I truly believe that I will frond the answers I am looking for in Texas. And I am very eager to get there and see what they have to say.

Questions Answered & Second Opinions

2011-08-08T18:19:00.000-04:00

We just got home from seeing Dr H (my oncologist). Today's appointment was long! A few different things were accomplished, I had blood work done (there are lots of levels that are a little low), I had a bone building treatment done, and a lot of questions were answered. The questions weren't all ours though, my parents and Erin went with us today. They all had lots of questions that Joe & I couldn't answer, and we thought it would be best to just have Dr H answer them.

A few of the new things we learned today are...

*NETS does not usually respond to chemo...WHAT?!?!?!?! Are you as confused as we were yet? When I was in the hospital for my surgery, my roommate also had NETS and she was told she would not get chemo because NETS doesn't respond to chemotherapy. My mom just happened to mention that to Dr H today and he looked at her and said "that's correct, it does not". He went on to say that when he discussed my case with other doctors back in December he was basically told "good luck" when he said he was going to do chemo. But for me it worked! We now know that it did not completely work (my cancer is back), but it worked to the point that I am still alive, my cancer is not as bad as it was last fall, and that it kept the cancer from spreading to anywhere other than my skeletal system. I have NETS in the most unusual way (Dr H reminds me how rare my case is) and it responded in an unusual way to chemo. God is truly at work.

*As of right now, I will be doing chemo again. I am scheduled to get a port (YUCK!!!) and start 3 new chemo drugs in 6-8 weeks (once I am healed from surgery and have recovered from radiation). I am not looking forward to more chemo. My hope is that after radiation when I get a repeat PET scan that it will show all my tumors are gone and I won't need the chemotherapy!

*Dr H also suggested I get a second opinion. He said he encourages all his patients to get second opinions (I was in such desperate need of treatment last December it was never brought up). He also said that because I am such a rare case, he would really like more opinions on treatment options and such to make sure he is making the best decisions. So as of right now, we are planning on getting a second opinion and are looking into 2 options (one is in New York City and the other is in Houston, TX). Dr H suggested both hospitals and Erin had actually mentioned both to us previously about possible second opinions.

So, what are we going to be doing over the next 6-8 weeks? I have approximately 2 more weeks of surgery recovery before I can start radiation (if I can travel we'll get our second opinion during this time), then I will have 2 weeks of radiation therapy, and then 2-3 weeks of recovery from radiation (if I couldn't travel earlier then this is when we'll get the second opinion), then a PET scan and I'll start chemo.

And what can you all do over the next 6-8 weeks? Pray! Please pray lots and lots for me, our entire family, for the doctors that will be looking at my file soon, for tumors to go away, for blood levels to return to normal, and for the radiation to finish off what is left of the tumor in my pelvis. Whew! That's quite a list :o)

Thanks again to everyone that has prayed for us, brought us meals, and has watched our kiddos! You are all amazing people!

Relapse

2011-07-30T09:47:00.000-04:00

Of all the news I got yesterday from my oncologist, the only thing that actually made me cry was the word "relapse". Not the news of new tumors or even of the possibility of chemo. It was just a simple word that broke me. I can't tell people I beat cancer anymore. I can't say that I won. I can't use the wonderful words "cancer free" to describe myself. My cancer has relapsed. I have cancer again.

Now, I am not discouraged by it. I had actually anticipated having to deal with cancer again...but I thought it would be years and years and years from now. Not 3 months after I finished fighting it the first time. I am ready to deal with whatever my body has to. Although the idea of more chemo is NOT something that I want to think about, if that's what I need to do, then that's what I'll do. If I must lose the precious little bit of hair that has grown back, then fine...it'll grow back again (and this time I know how long it will take). Although it kills me to miss out on so much with my kids when I'm not feeling well, I know that this short time in their life won't even compare to the years I get to spend with them afterwards. I don't doubt with even a single fiber of my being that I won't beat this again. Its just the road I have to take to get there that isn't so pleasant.

I thought everyone might like to know exactly what we know as of right now. My PET scan from last week showed that I have multiple new small tumors on the bones in my pelvis (new as in weren't there during my last PET scan last December). They are small, but the surgeon who removed my tumor last week was still able to see them during my surgery. The good news about the tumors (yes, I guess you can have good news about tumors) is that they are on my bone. What I mean is that, the cancer is still only in and on my bones, it hasn't spread to any organs or other parts of my body. Its still confined.

The other thing we know is that although they were not able to remove all of the larger tumor last week and I will have radiation to treat it, the biopsy results showed some good and some bad things. The good things are that it was extremely necrotic (dead) and had very little live cells left. That means that the chemo I had worked its magic on that tumor. Had it not been loosely attached to my nerve, it probably wouldn't have had to be removed. The biopsy also showed that although it still was not a typical neuroendocrine tumor, it was indeed NETS. That's good, because it means I don't have a second type of cancer. Unfortunately, it took a PET scan, surgery and a biopsy to convince my doctors that I was experiencing the same pain as last fall and that I thought this tumor was the source of all my back and leg pain then & now.

I don't have an appointment with my oncologist until August 8 (what a long wait). Then we'll come up with a plan for how to proceed. Until then I could use some prayers for recovery from my surgery and calm & peace for our family over the next week.

Visiting SC

2011-06-05T09:30:00.001-04:00

Before we met my family for vacation, Joe & the kids and I drove down to SC to have a quick visit with friends. We don't regret our decision to move back to Ohio, but sometimes we really miss living in South Carolina and our friends there. We hadn't been there to visit in 2 years and that trip was less than 24 hours, so we were long over due for a visit. Unfortunately, this one was also a quick visit (just 48 hours) and we weren't able to see all our friends. It was a last minute decision to go since we weren't sure if we would be able to with my issues and Will's recent heart cath. We stayed with our friends Nick & Mandy. What's great about staying with them is they have a little girl who's 3 and their son is 7 months, so the kids had a blast playing with them!

Our only full day there, we went to downtown Charleston (which just happened to also be my birthday). We had lunch at the Noisy Oyster, visited the South Carolina Aquarium (Nick & Mandy have a family pass so we got in free!), and walked around downtown. It was a FANTASTIC day for walking around! The temp topped out at only 84 degrees and it was slightly overcast and breezy, so much nicer than the normal 90's and sunny and humid and you sweat just standing still.

Feeding the sting rays.

We very often heard "Hey Julianna" or "C'mon Taylor"...these 2 loved being together!

We let Julianna splash in the fountain at Waterfront Park.

Sadly, there was some major camera fail going on the day we were downtown. My camera would randomly stop focusing. I couldn't get it to work on the automatic or manual settings, so I didn't get to take a lot of the pictures I really wanted to. I can't wait until our next visit to SC, hopefully this time it won't be so long between trips!

Water Table Fun

2011-05-22T09:12:00.001-04:00

Grow Aorta, Grow!

2011-05-12T10:03:00.000-04:00

Its always so nice to be home after being in the hospital, but especially so when you're there for your kiddos. Will's heart cath went really well. Several people that were in the cath lab for it commented on what a great job he did. He didn't fuss when they took him back, and sat there watching everything while they did some more prep work. They said he didn't even mind the mask when they put it on him.

In the waiting room after signing in.

I was impressed that he wasn't even cranky from not getting anything to eat. :o)

In the cath lab waiting area.

Although he did really well during the cath, the news we got afterwards wasn't all that great. We found out he has bilateral femoral vein occlusion (both veins in his legs have been damaged and they cannot be used for caths...I guess this really isn't a big deal and happens in a lot in kids that have had IV's or caths in thier legs as infants). They also found out he has some kidney abnormalities. Instead of one output or "tube" going from each kidney to his bladder, he has 2 from each kidney. After talking with nephrology, Dr W called us last night and said it wasn't a concern and just increases his risk of UTI's and kidney infections. But the most disappointing news was that the balloon angioplasty of his aorta (the section where he had his coarc repair) was unsuccessful.

Still groggy from the anaesthesia.

When they ballooned the aorta, instead of staying open wide, it shrank right back down to where it was. Most of his aorta is 8mm across (pretty normal size), but there is a long section (long as in not just a single location) that is only 4mm across.

Trying to tie his monitor wires in his gown so they would quit getting wrapped around his legs.

The good news is that the cath showed the gradient (difference in his pressure before the narrowed section and after it) was not as bad as the echo showed. So, that means for now he will just get monitored. If there is a change in his blood pressure (they take it in his right arm and then in his leg and compare the two) or any other symptoms worsen, then we'll be looking at most likely another surgery.

This is how most of his pictures look, all blurred because he wouldn't stay still!

They didn't really discuss much about surgery since he's just being monitored, but anytime surgery is mentioned for a heart kiddo its super scary.

Ready to be discharged.

Dr W told Will yesterday that he needs to tell his transverse aorta to grow so he wouldn't have to see him again except for a visit. So we'll be praying for Will's transverse aorta to grow.

Praying lots.

Today's the Day...

2011-05-05T10:00:00.000-04:00

...that I will get to hear the words "complete remission". I just know it. I meet with Dr H this afternoon to get the results from last week's bone marrow biopsy and I know the last 2 rounds of chemo did their job and kicked my cancer's behind.

I am ready to be done with this whole thing and move on. We have the March for Babies on Saturday, Will's heart cath next Tuesday and then the end of the month...we go on VACATION! I cannot tell anyone how much we NEED a vacation! I'm so excited to go to the beach (with a hat and sunscreen on my head of course!) and see all our friends in SC!

I know today's appointment will lift a huge weight off my shoulders, Joe's shoulders, and those of our families as well. So if you have a spare minute today, please say a prayer that I get the wonderfully good news I am waiting to hear. :o)

1 Year Later

2011-04-14T15:08:00.000-04:00

Yesterday marked 1 year since Will's heart surgery. In some ways I can't believe that a year has passed and other times it feels as though its been 10 years since that day. Today, ill had a check-up with Dr Awesome. He hadn't had a cardiology appointment since November, so that meant the usual blood pressures and EKG, but also an echo.

Will's BP was pretty high in his right arm (always been slightly higher due to his coarc), like, high for an adult high, but Dr Awesome wasn't too concerned because Will was pretty upset right before they took his blood pressure. But he didn't want to rule it out as a sign of a problem either. His EKG looked superb :o) His exam went well and Dr Awesome was happy with how well he looks. He did say his murmur (the noise due to his coarc) was pretty loud, but again said he needed an echo to see if it was a sign of a problem. So we went for an echo...boy, oh boy is it hard to keep a 1 year old still for a 45 minute long echo!

A rattle, a light up toy, Elmo in Grouchland, a baby cell phone, a bottle of juice, his socks, goldfish and a book helped us keep him relatively calm during the echo. He actually did better than I anticipated and only grabbed the wires once. The echo showed us good things and bad things.

The good was that his heart is still functioning normally! The left ventricle is still working and not over-working, his aortic valve is still opening well, his mitral valve stenosis is still considered mild and the left side of his heart is growing normally (nothing is too small). It also showed that his aorta has grown! There was a section of his aorta that could not be repaired during his surgery last April and as of November it was still not growing the way it should. It was still very small and causing some pressure issues. If it did not start to grow with him, there wasn't really anything they could have done for it. But it DID grow! A lot!

There is narrowing at the point where he had his coarctation repair. We knew this was a possibility (I think its something like 20% of babies that have a coarc repair have re-narrowing). So next Wednesday, Dr Awesome is going to get the opinions of the other cardiologists, the surgeons, etc.. to see if they feel Will should have a heart cath. Dr Awesome says he feels Will should have one before too long to try to balloon the narrowing section, but always likes to have other opinions.

So next week will be a big week for our family. Monday, we find out what's next for me (when biopsies and test will be and how often I will need check-ups, etc...) and on Wednesday, we'll find out if Will will be having another heart cath and how soon it will be. I asked Joe this morning how it feels to be the only medically sound person in our family...haha! His response was he may be medically sound, but mentally sound may be another thing now :o)

Help me reach my goal!Sponsor Me at March for Babies!

2011-04-07T10:56:00.001-04:00

Picture Time

2011-04-04T11:55:00.000-04:00

We took the kids to get their pictures taken yesterday. We were a little behind in the picture department. Julianna got her 3 year pictures, Will got his 1 year pictures and we got a family picture (the picture we had hanging in our living room didn't have Will in it). Will was not in the mood for pictures and refused to smile. Julianna however was her usual ham and most of her pictures included a really cheesy smile. Here's a few of my favorite pictures :o)

1st Birthday Party

2011-04-03T09:25:00.000-04:00

Last night was Will's 1st birthday party. I had wanted a huge celebration for my little heart warrior, but my present state of being made the final decision. So we had a family affair with grandparents, great-grandparents, aunts, uncles & cousins. It was a monster themed party for our little monster :o)

The birthday boy looked so grown-up!

He had an adorable smash cake thanks to my friend Sarah (owner of Tutu Sweet) and he loved every bite!

It was a wonderful party and I am so thankful for such a healthy little boy! One year ago we were gearing up for a heart cath and who knew what else and today we have a med-free little guy who has amazed us and his cardiologists. Happy birthday little man!

Nearly Complete

2011-03-15T15:35:00.000-04:00

I am in "nearly complete remission"!!!

What does that mean? I am technically in remission...its just not 100%. I had an appointment with Dr H yesterday to go over all my test results and he was very happy with the results. In December, my bone marrow was mostly cancer with a little bit of normal marrow, now, it is almost all normal marrow with just a little bit of cancer. The cancer was very responsive to the chemo :o)

Dr H gave Joe and I two options for what to do next. The first, was to not do anymore chemo treatments and just follow-up every 3 months to keep an eye on the last of the cancer cells. The second, was to go through 2 more chemo sessions and then have a repeat bone marrow biopsy to see if we could get to 100% remission. At the end of those chemo sessions I may be in 100% remission or still just nearly complete remission, but at that point I would be DONE with chemo and just do 3 month follow-ups. We decided to go with 2 more chemo sessions and shoot for 100%!

So, I start another round of chemo on Thursday (wonder if I could get a green beer during chemo? heehee!). My LAST round will be April 7-9. I think I am much more accepting of more chemo knowing I absolutely will be done with just 2 more sessions. No wait and see how the tests go. I also feel so relieved knowing how well the cancer responded to the chemo and to know how happy my doctor was with the results. He also gave me some stronger anti-nausea meds since that has gotten worse with each session.

So during the next 6 weeks we'll be praying for those last few cancer cells to take a hike. I can't wait to feel good all the time again!

First Steps

2011-03-04T09:00:00.000-05:00

This post is about a week over due, but Will has started taking steps! On February 26, he turned away from the exersaucer at my parents and took a few steps to my mom! Now he is taking 2 or 3 steps successfully all day long. Sorry for the bad video quality (all I had was my cell phone & it was dark in the room), but here is Will taking a few steps shortly after his first few.

My Little Cuties!

2011-02-23T12:09:00.000-05:00

I haven't posted any pictures for quite awhile...so here's a few of my little cuties :o)

My Last Chemo?

2011-02-21T20:23:00.000-05:00

I have started my countdown to another chemo session today...I have my 4th treatment this Thursday, Friday & Saturday. But this session is different...it's my last scheduled treatment. That means that after this session I'll have a bunch of tests (probably bone marrow biopsy, MRI & CT) to see if the chemo was successful. If it was then I'll get to hear the word I have longed to hear since I was diagnosed in December...REMISSION. I am praying my heart out to hear that I am in remission.

I whole heartedly believe the chemo was successful. During my one week of feeling good between sessions, I feel amazingly good. With as bad as I was feeling before my diagnosis, I can't imagine that I am not better. I have completely quit taking my pain meds because I have NO PAIN anymore. None. Considering I was in so much pain in the fall that I couldn't move at all, having no pain now is amazing!

On the kiddo side of things, both are on the up side of colds. We took them both to the pediatrician last week because they sounded so bad and we were concerned with some crackly breathing from Will, but luckily both just had nasty colds and nothing worse. I am still surprised that I have a 3 year old and that Will will be 1 in just a month...I really need to get to my party planning!

And Joe has been super Mr Mom...working 2 jobs, taking care of the kids, doing all the housework, and taking care of me. He's amazing! I am so lucky to have such a wonderful husband and kids and family!

Bump in the Road

2011-01-29T09:21:00.000-05:00

Well, we hit a bump in the road yesterday. I came to the clinic for some testing to see how well my chemo is working and the CT scan showed I have a pulmonary embolism (blood clot in my right lung). So I was immediately admitted. It stinks because I feel great right now and yet here I am sitting in a hospital bed.

I am thankful that they found the PE, since they can actually be fatal if not treated. But it stinks that I got it. Dr H says that it isn't an uncommon thing to have happen for chemo patients and that I will need to be on blood thinners for quite a long time to prevent more. We're waiting for some insurance approval right now. If our insurance approves a home injection, I can go home soon. If they don't I will be here for at least 3-5 days on an oral med instead.

As far as results from the tests about how well my chemo is working...we're still waiting on those. I do know thee CT showed no cancer BUT I don't think the cancer showed up in my CT before either. I need to get some clarity on that before I start jumping for joy. Hopefully today will be a multiple post day and I'll have some good news to share later!

Losing My Hair

2011-01-11T20:45:00.000-05:00

I've had a few people ask me just how quickly my hair is falling out. Well the best way to explain it is to show you. This is what a chemo patient's bathroom sink looks like after brushing their hair before bedtime...

I have very thin hair right now with a few bald spots (but today I was able to hide them still). My sister was going to shave my head for me tonight, but didn't have the clippers she needed when I was there...I was slightly disappointed, but also kind of relieved. I get to keep what little bit of my hair I have left for a few more days.

I also received some amazing news this evening! During my time in the hospital, in addition to my cancer they found a mass on my spine. They weren't sure if the mass was cancerous or not, but were pretty sure it was the source of most of my pain since it was pushing on my spinal cord. I went today for a follow-up MRI and tomorrow I was supposed to meet with doctors in radiation treatment and neurosurgery to consult about the mass. I unexpectedly got a call from Dr H (my oncologist) this evening telling me my appointments tomorrow were cancelled because the mass on my spine was GONE!

Today's MRI showed there is no longer a mass on my spine! After one round of chemo it is gone! That means that the mass was probably cancerous, but it also means it responded amazingly well to the chemo. I am praying that means my NETS cancer is also responding really well to the chemo!

I have an appointment to get lab work done on Thursday morning (7:30am) and then an appointment with Dr H (8am) and if my blood counts have come up enough then I will start my next round of chemo that day at 8:45am. It's a long day (7-8hrs) of chemo. Then I have 2 more days (Friday & Saturday) but they're each 2 hour sessions. That will be it for chemo then until my next round, 3 weeks later. Please say a prayer that my blood counts are up & that I can tolerate my chemo well (I didn't do very well with day 1 of the first round). Thanks everyone! I know all these prayers are working and I am looking for my own little miracle, just like each of my kiddos have had.

4 Foods...

2011-01-01T20:27:00.000-05:00

that I can eat without my anti-nausea meds (I can't even eat most foods with them!)

mashed potatoes
grapes
Katie B's chicken soup
chocolate covered pretzels

So it appears this will be my diet for the next few weeks...haha!

One-Of-A-Kind

2010-12-30T16:40:00.000-05:00

What happens when a boy hopes that someday he'll marry a one-of-a-kind girl? Joe gets a wife that has a cancer that no one in the world has ever had the same way. Haha! I am finally feeling up to spending a few minutes blogging again so I thought I'd share a little about my one-of-a-kind cancer.

Neuro-endocrine tumors are not unusual. They are actually (and THANKFULLY!!!!!) one of the most responsive types of cancer to treatment. But mine...mine is not normal. Normally you would find a tumor (hence the name) and then see where it may have spread. I however, have no tumor. They cannot find one. They've looked and looked and still no tumor. My cancer is all in my bone marrow (not the normal place for this!). Being in the bone marrow is what led to my initial diagnosis of leukemia. But after test after test and scan after scan, they realized it was not leukemia but this other type of cancer...just not like it would normally be seen.

One of my doctors (I have so many, I don't have cool names for them yet), said he spent literally hours looking for another case like mine from anywhere in the world and could not find one. The doctors are still searching for a tumor (looking everywhere!), but are treating me as though they have already found it.

So that's what happens when a boy wishes for a very special girl someday. Moral of the story...be careful what you wish for...heehee...JUST KIDDING!

While I was in the hospital I was pretty hopped up on drugs and I literally do not remember almost a whole week...but during that week I do remember insisting that Joe take the kids to the fire department Christmas party to see Santa (since it's such a small group). Here's the kids with Santa...Thank you for taking them Joe!

Here's the News We Got Today

2010-12-16T15:34:00.001-05:00

Since my appointment at the hematologists at 9:45 this morning the following news has spread like wildfire, so I figured I would at least let everyone know as much as we do.

I had a bone marrow biopsy done on Monday (super duper painful by the way! Dr. A said I have unusually hard bones...ha!). I have had a total of 3 blood draws (from Dr A's office) and each one showed my hemoglobin's, white blood cells & platelets dropping. Then during today's blood draw the lab testing my bone marrow called and we were told my bone marrow has abnormal cancerous cells.

They haven't identified a type yet and are still running more tests. So, Dr A sent me to the hospital right away for CT scans of my chest, abdomen & pelvis to look for tumors as a possible cause of the cancerous cells. He already called back and said the scans were all normal. The next plan of action is that Dr A already called the Cleveland Clinic and has referred me up there. I'm just waiting for a call from them to set up a first appointment.

I am still optmistic that since they have yet to pin-point exactly what type of cancer it is, that it will be an easy one to beat, especially through faith & prayers!
I would definitely appreciate any prayers and lots of good thoughts. Thanks everyone!

Taking Over For Me

2010-12-07T16:24:00.000-05:00

While my back has been getting worse over the last few weeks, Joe has really stepped up and been the most amazing husband and father ever! He does all the housework, all the meal planning, grocery shopping, laundry (even washed a load or two of cloth diapers!), cooking, takes care of the kids, arranges for other people to watch the kids while he's at work, and so much more! He is hands down the best husband and father I could ever ask for! I am truly thankful for him!

But on top of all that he has even stepped up in the photo department. He knows how much I love to take pictures of the kids and it has been hard for me to do it while laid up on the couch, or zonked out from meds, so he has taken over in that area too. It really means a lot to me that he has picked up the slack with my camera because I don't want to miss a thing!

I thought I'd share a few of the great pictures he has taken of Will lately (I'll post pics of Julianna on another day), so you too can see how great he's doing!

I love my hubby!

I Guess Its My Turn

2010-12-04T02:27:00.000-05:00

Ok, well it seems as though Our Ordinary Stories is going to become a means to keep folks updated on medical issues once again. But I guess this time its my turn to have the issues. Most family & friends know that I have been dealing with some back issues for the last several months. Since Thanksgiving, things have gone downhill extremely fast. I am pretty much in severe pain all day long every day. It's gotten to the point where I can't even take care of Will & Julianna (they have been spending a lot of time at grandparents and at Aunt Erin's).

Monday, my pain got to the point where we pushed really hard to get me in for an MRI. I am just so tired of hurting all the time and wanted some answers. On Thursday evening my doctor called me back with the results, and things have just snowballed in the last 36 hours. I have degenerative disc disease (arthritis in my back I guess) and a herniated/bulging disc. They said this could be causing me some discomfort, but should not be causing me all the pain I am feeling. Even the strongest pain meds I could be prescribed wear off within 2-3 hours. My doctor then went on to drop some unexpected news that then led to all this craziness.

Disclaimer: I do not know a lot of information right now and could totally be screwing things up, but this is what Joe & I were told today. The MRI also showed that I have red marrow reconversion in my back. The explanation we were given is that the bone marrow in my back (which should be yellow in adults-mostly fatty) has reconverted back to red (what it is in children). This can happen for about 800 different reasons, but most the of the top causes are not good ones.

So Joe went into his "get things done" mode and moved things along pretty quickly for us. My doctor was kind of dragging her feet on doing much of anything until next week (since today was Friday), but Joe was great and today I got x-rays of my hips and legs (another area of extreme pain when my back is bad), I had a crud load of blood work drawn and next week I have appointments to see a back specialist about the disc issues and a hematologist/oncologist for the other issue...got the call this afternoon that that appointment will include a bone marrow biopsy...fun.

So needless to say, I'm freaking out just a little bit. Some scary words were thrown around by my doctor (whom will most likely not be my doctor for much longer...she admitted she had to google some of what she was explaining to us! Seriously????) I would love if everyone could say some extra prayers for me and for Joe, who is now doing ALL of our household/parenting responsibilities on his own in addition to working, and for my kiddos who are not all that happy with being shuffled around houses since mommy can't take care of them.

Thankful

2010-11-25T02:58:00.000-05:00

What am I thankful for this year? Is there anything to not be thankful for??? There's a list a mile long to be thankful for, but 2 of the highest on the list are my happy little man and my silly little girl.

Kiddo Haircuts

2010-11-18T17:38:00.001-05:00

Both kiddos got haircuts today :o) It was Will's first and Julianna's second. Will just had some really really long hair on top of his head. I mean, like 3 inches long just on top. When he woke up this morning and I thought he looked like a little old man with a really bad comb over, I decided it was time for his first haircut. He went to Daddy's barber just like a big kid.

Here's the before (check out the shagginess above his eyes)

Here's the after (just a little trimming on top & in front)

Julianna needed a much more in depth haircut. The first time she got her hair cut, I did it in our living room and that was over a year ago. Her hair was just starting to look shaggy no matter what I did with it, except for pigtails...which I will so dearly miss now :o( I didn't think she'd sit for me to do it, so she made her first trip to a salon.

Here's her before (look how long her hair was!)

Here's her after (I think she looks so much older now!)

Both kiddos look so much better and now I won't hear Julianna crying every morning "No! No! Don't brush my hair Mommy! (Ha! she'll probably still whine).

And just because I think its a super funny picture, here's another one of will :o) And check out there's top teeth now!

Update on the Kiddos

2010-11-09T20:20:00.000-05:00

Quick update...Will's cardiology appointment went really well...so well, that he doesn't need to go back until April! All the concerns we've had recently Dr Awesome explained are not an uncommon thing when the weather turns colder. He said we'll probably notice the color change and temperature change even more as it gets colder, but unless its accompanied by breathing issues, sleeping too much, or starts eating less then it isn't a major concern. His blood pressures were good and so was his EKG. YAY!

Julianna also got her custom "butterflies" today (aka braces). They are not at all what I was picturing. They are much bulkier than the ones we've been borrowing and are bright purple! I wanted a fun color for her, but that was when I thought they were smaller. There will be no missing these when she wears dresses, haha! And I cannot find her shoes to wear with them! All the shoes I find are way to narrow to fit the braces in. Guess we'll be looking for some wide width shoes in the next few days.

All in all, today was a great day for my kiddos! I am so appreciative of every one's prayers for both of them! THANK YOU!

Awake

2010-11-09T05:07:00.000-05:00

It's 5am and I am awake...ugh. I have been awake since 3am thanks to a little man who hardly sleeps anymore, a back that just won't get better and quit hurting and anxiety over a cardiology check-up.

Will's last cardio appointment went really well. So well, that he was taken off his last medication and we were moved to 8 week appointments instead of 6 week ones. I am praying that today's appointment goes as well, but I am worried. Yeah, I have the normal (can you call any of these feelings normal????) anxiety for just wanting a good report, but we also have some concerns since his last appointment with Dr Awesome.

Will hasn't ever been a "pink" baby. He's always had a slightly blue tint to him, but unless you see him next to a "pink" kiddo, you don't really notice it. When he would eat or get really tired, his hands and feet would get even more blue, almost purple. But lately we've noticed a lot more blue. Not just when he's eating or tired, but when we're holding him, or sometimes when he's sleeping, really just random times.

We've also noticed major differences in the temperature of his hands. Where his coarc was (and still somewhat is), is after the blood flows to his right arm & head. That was one of the reasons he had blood pressure differences (high in the right arm, low in the left arm and legs). Lately his right hand & arm have been keeping very warm, but his left hand will be ice cold. This is new. We've never noticed temperature difference before in his hands. This really worries me.

One of his still trouble spots is his aorta. They were not able to completely repair his coarc and it hasn't been growing as well as it should. It has grown, which is good, just not as much as it should have. I am terrified that these new symptoms are a sign that his aorta hasn't grown enough. Or that his coarc has recurred (about 20% of babies with a coarc repair have that happen).

So if y'all could say an extra prayer for him today, we would really appreciate it. And now on a lighter note....he's some pics of the kiddos :o)

Isn't he looking so grown up! I can't believe we have less than 5 months until he's a year old! And you gotta love the puff stuck to his cheek...haha!

Julianna drew her pumpkin face again this year and we carved it, but she did an awesome job! I love the crooked smile! She is doing so well cognitively her teacher said she has run out of activities from school for her to do!!

Almost Wordless Wednesday: My ADORABLE kiddos!

2010-10-27T16:36:00.000-04:00

And yes, that's how Julianna has decided to smile for pictures now....weirdo :o)

Pumpkin Patch

2010-10-21T08:30:00.000-04:00

We started taking Julianna to a pumpkin patch her very first fall (pictures here). It was kind of like our last hurrah before winter lockdown...haha. We went back last year (pictures here), and we went again this year. My back was really bothering me that weekend, but I was determined to go, so I popped a few of my "make my back feel better" pills and took a nap in the car on the way there...lol...I seriously fell asleep during the 10 minute drive from my parents to the farm. Stupid pills.

Julianna had a blast this year and the weather was gorgeous! 86 degrees that day! And there were 2 extra kiddos to take pictures of :o)

Nummy Nummy

2010-10-06T15:20:00.001-04:00

Topic: Wordless

Neglected

2010-09-29T23:11:00.000-04:00

I realize I have neglected this blog yet again, but it has been for several reasons. I've been working hard on Spoons, Spades & Stitches...I've been getting some awesome reviews & giveaways lined up (if you aren't already a follower of SS&S, you should check it out!). I have also been super duper busy. Earlier this week we had a funeral to attend and I took both kids to mass for the first time by myself. It went much better than I had expected...Will fell asleep about 15 minutes in and Julianna fell asleep on Aunt Erin's lap just after communion...ok, so I had some help. And this week is full of doctor's appointments. I had one yesterday, another today, Julianna had one today and Will has one on Friday...sheesh!

Julianna's appointment didn't go quite how we had expected, but I'm not sure how much of it I want to share yet (I know that's so unlike me! I share everything!). It was an emotionally taxing day. but you know what makes everything better? These kids!

This tutu is a hint for one of the giveaways this weekend on SS&S :o)

His foot had just been removed from his mouth...seriously it was in his mouth!

Whatcha Doin'?

2010-09-26T09:59:00.000-04:00

She just looks so grown up anymore!

My First Award

2010-09-20T10:51:00.002-04:00

I got my first blog award today :o) Thank you so much to Liz from "From Chalkboards to Strollers"! I was so excited that Liz chose me!

The rules for accepting the award:

1. Accept the award. Post it on your blog with the name of the person who has granted the award and his or her blog link.

2. Pay it forward to 15 other bloggers that you have newly discovered.

3. Contact those blog owners and let them know they've been chosen.

And here's my 15:

Melissa from "These are the Stories that will Write our Book"
Abbie from "The Craziness That is my Life"
Danielle from "The Happenings of the Harper Household"
Jennifer from "The Martin Family Blog"
Mallory from "Diamonds & Pearls"
Heather from "3 Under 3"
Shannon from "Webbisodes"
Tracy from "Hall of Fame Moms"
Amy from "Life with the Wahls"
Kelly from "Miller Times"
Mama Hen from "Mama's Little Chick"
Jill from "Meet the Dubiens"
Melanie from "Going Green with Noah"
Beverly from "The L Family Blog"
Jackie from "3 Little Ones"

Some of these blogs I follow from here and some I follow from Spoons, Spades & Stitches...but they are all awesome blogs!

Treats

2010-09-18T10:04:00.002-04:00

Today was Trick-or-Treating at our campground. Yes, it's early, but the campground really has nothing to offer come the end of October. Julianna totally got the concept this year. Instead of "trick or treat" she would say "please", take her peice of candy & then say "thank you". It was too cute!

My little pirate

And check out Will with his Grandpa Snyder...William Joseph & William Joseph.

Julianna-isms

2010-09-16T08:58:00.002-04:00

Julianna can say the most unusual and seriously funny things. So today, it's all about my toddler's talk...and I'm totally writing it just how it sounds, so good luck reading it!

"inna"
I wanna go inna da house. I put it inna da tawset. William (oh yes, she calls him William) go inna his tarseat.

Oh mommy you so siyee. You mate me laugh youd youd youd.

I tolor with my chotolate chip crayon.

I a bid girl. No more do do Dora's.

Mommy you hair is metty metty metty. (gotta love the honesty)

I hummy...please I have em ems? (a no from mommy) Please I have chotolate chip? (another no from mommy) Please I have sayad? (seriously, her next question...a big YES from mommy!)

I love my little girl and I love how well she is communicating now! She has exceded her age vocabulary wise, but we're still working on clarity. She's such a talker!

A Confession

2010-09-15T11:03:00.000-04:00

I totally still have "when I grow up" dreams for myself. I know it may be silly, but I still have my list of all the things I want to be/do when I grow up. My list doesn't seem to be getting any shorter and in fact seems to be getting longer almost every day!

Every time I see something I love I think "Hey, I can do that!" and it gets added to my list. So what are some current things on my list of "when I grow up"?

I want to open another Etsy shop and make things I love...baby stuff...girlie stuff...boy stuff...anything!
I want to be an awesome photographer...guess I should start learning how to use my camera better.
I want to go back to teaching...but not to the kids...heehee.
I want to be a world traveler...does Canada & Mexico count?
I want to be fantastic chef...you know the kind that doesn't make dinner from the freezer...and no, I don't do it very often.
I want to be a cake baker...I am a sucker for gorgeous cakes!
I want to work with babies...everyone's a sucker for babies!
I want to be an artist...art supplies make me want to be creative, but totally intimidate me and make me feel pressured to be creative.

I feel just like a kindergartner telling her teacher what she wants to be "when she grows up". But what tops my list is...I want to be an awesome mom...always working on this one.

Do you have a confession? It can be big or small...add it to our list!

Lovin' the Grandparents

2010-09-14T16:59:00.000-04:00

My kids love going to their grandparents' houses and thank goodness too!They have to spend quite a bit of time with them sometimes. This past weekend I had some sciatica issues and ended up on some pretty strong meds (knocked me out in 15 minutes!). So the kids got to spend time with their grandparents. Sunday I went with the kids to my parents house. Julianna loves grandpa's grapes!

Will doesn't get quite so excited.

And neither one was a fan of the scarecrow.

Yesterday, they got to spend the day with Joe's mom & dad. Julianna gets very excited to go to Grandma's house (both grandparents' houses are Grandma's house...grandpa's apparently don't count...lol). Julianna cried when they left our house because she wanted a "jamma party" at grandma's house. I love how close my kids are to their grandparents!

Butterflies & Cereal

2010-09-09T20:59:00.000-04:00

Yesterday, Julianna & I went to a botanical garden & butterfly house. She had so much fun.

She walked around the butterfly house with their brochure and would look at it and then look around, just like a little scientist looking for a specific species.

Emma & Ellie got to experience butterflies right on their heads.

The kids all loved going on the short trail walk afterwards.

Then yesterday evening, Will got his first taste of rice cereal. I put off starting cereal longer than I did with Julianna by about a month or so, and I'm glad I did! He was much less messy than she was. The cereal actually all stayed in his mouth!

I don't think he really liked it though...haha!

Big sister Julianna of course had to help and she did wonderful!

Fairs & Mohawks

2010-09-02T13:42:00.000-04:00

Yesterday, we took Julianna to the county fair (it was free admissions before noon!).

We thought she would love all the animals. We were wrong. She could have cared less about any of the animals. Correction...she could have cared less about any of the live animals. She LOVED the carousel horses. Haha! I knew we wouldn't be able to get away with not letting her ride the horsies. She loved riding all of the other rides just as much.

She had even more fun once her cousins got there and Ian rode with her.

Will didn't go with us, instead he enjoyed the AC with his Grandma K & cousin Mia (it was so stinkin' hot yesterday). On a completely unrelated note (hey, it's my blog I can jump topics whenever I want), Will seems to only be growing hair on the very top of his head. We laugh and call it his military haircut. But the other night he told me...remember we have great conversations...he wanted to look a little more rock. I obliged and this was the result...

He was totally rockin' a baby mohawk! The funniest part was that I did this while it was wet and it stayed that way overnight and all day the next day!

Julianna's Special Doctor

2010-08-31T13:07:00.000-04:00

Julianna saw her neurologist, Dr A, today. It's been a year since she saw him last! We spent last night & this morning talking up her "special doctor". She got really excited when we told her Will had a special doctor too. She likes anything that makes her and Will similar. She did so well! She stood on the scale and under the height measurement all by herself. She even let them take her blood pressure with just a tiny wince at the beginning.

Overall Dr A was pleased. Her muscle tone is good, as are her reflexes, and her quick neuro exam was good. He agreed that she needs braces on both her ankles and wrote us a prescription to get our own pair (we're still borrowing from her therapist...although she has much cuter ones now! They have flowers all over them.).

After watching her walk & run, he decided she needs a podiatry consult. In addition to her ankles rolling in, he noticed her knees tend to be close together when walking or running and that her left foot turns out (this is what causes her adorable booty shaking run...seriously, if it wasn't bad for her, it really is adorable!). She'll see Dr. B on the 29th for the consult. Dr. A thinks she may need a different type of brace or other intervention to correct her foot.

Our next doctor appointment will be for Will on Tuesday. He'll see Dr Awesome and have another echo...praying it shows improvement and the word "cath" isn't even mentioned!

Jump Baby Jump!

2010-08-30T15:02:00.000-04:00

My little mister has finally learned just how to operate his jumperoo...and he LOVES it!

And the New Winner is...

2010-08-28T09:33:00.000-04:00

Sadly, one of the Skoy cloth winners did not contact me, so I chose a new winner this morning!

Congratulations Marah!

Marah said: The SKOY cloth has an absorption factor of 15x its own weight. AMAZING!

**Marah, you need to email me with your full name & address by 11:59pm on August 29. If I do not get an email from you by then, a new winner will be drawn.**

Thanks again to everyone who entered! And remember all future reviews & giveaways will be hosted at Spoons, Spades & Stitches! Become a follower over there, so you don't miss out! You can also become a fan on Facebook!

One Little Pearly White Tooth

2010-08-26T15:36:00.000-04:00

Until 2 days ago I didn't even know Will was teething. Sure, he drooled a lot...but babies drool. On Tuesday morning a tooth was discovered. One little pearly white tooth. Since then, I know he's teething. He has a second tooth just below the surface and this one must be giving him more trouble because he looks like this...

...and this...

So, I do what any mommy would do...I pop in a teething tablet...ah, relief...now he looks like this...

...and this...

...and even this...

Do you see his tiny tooth on the bottom? If you haven't tried teething tablets yet...you totally should!

(They're all natural by the way.)

And the Winners are...

2010-08-26T00:30:00.000-04:00

I am excited to announce the winners of the Skoy Cloth giveaway!

Congratulations Jackie at 3littleones!

Jackie said: I've made reusable swiffer duster mop pads and wet jet pads as one way to help out family go green :)

Congratulations Danielle Harper!

Danielle said: I have your button on my blog: happeningsoftheharperhousehold.blogspot.com

**Both winners need to email me with your full name & address by 11:59pm on August 27. If I do not get an email from you, a new winner will be drawn.**

Thanks to everyone who entered! And remember all future reviews & giveaways will be hosted at Spoons, Spades & Stitches! Become a follower over there, so you don't miss out!

The Farthest I've Traveled...

2010-08-24T23:55:00.001-04:00

Ok, so I cheated and I'm technically posting this on Tuesday, but it's close enough!

I'd love to write about traveling to see the Great Pyramids. Or about sipping wine in France. Or even about walking on the Great Wall of China. But I can't. I don't even have a passport!

I have not traveled as much as I would have liked. I once dreamt of going to Ireland, Italy, France, Hungary (where I have family), Australia & so many other places. But alas my life has taken a different turn, one that I wouldn't change for all the trips in the world. My kids can be a real trip most days anyway!

But what is the farthest I've traveled? I went to Cancun when I was in college. No, it wasn't for Spring Break, and no it wasn't a wild crazy time. I went with 3 girlfriends and we had a blast. Days were spent on the BEAUTIFUL beach, evenings included delicious food & nights were spent having fun and enjoying ourselves. I was glad I got to experience a trip outside the US (besides the family trips to Canada as a kid).

Maybe someday I'll get to travel to one of my wish list destinations.

**Want to join Whatever Wednesdays? Write a post about the furthest you've traveled and then link to it below! There's also more info when you click on the Whatever Wednesdays tab above, including the WW button!**

Blankets & Jammy Pants

2010-08-23T18:18:00.000-04:00

I watched my sister's kids today while she had an appointment & let me say this is the one (& only) time I am thankful for Yo Gabba Gabba. It got the 3 oldest kiddos all to sit down and they were absolutely silent for 24 minutes! Ian & Ellie both have blankets they love. They carry them everywhere. Julianna never really became attached to a blanket, or really anything. So, what does she insist on holding during Yo Gabba Gabba? Her "jammy pants". Yes, those are her pajama shorts.

Today's Trip to the ED

2010-08-21T22:52:00.000-04:00

It's late, I've had a long day and I'm exhausted. So, here's a quick update on everything that happened today. This morning while I was feeding Will 3 times he had episodes of closing his eyes and shaking all over. Each one lasted a little bit longer (the longest was about 10 seconds) and all happened in less than a 15 minutes time span. I remembered he had done this a few days ago while eating (it was very short and wasn't too concerning) and began to worry that something might be wrong with his heart.

We have been told over & over that at his age the first signs of anything going badly with his heart would show up during feedings. I started wondering if his heart wasn't working well enough as he made his way through the bottle & somehow he wasn't getting enough oxygen & causing the shaking. We were also concerned that since he was closing his eyes & was unresponsive during the shaking that they were seizures. Joe came home from work & we took Will to the hospital.

The ED doc said her initial thought was it was possibly heart related. They did a chest x-ray, EKG, CBC & had him on the monitor during his next feeding. Everything showed his heart was working fine and there were no problems. They called Dr Awesome and he said, with the test results, he felt confident he wasn't having any heart related issues. The CBC also showed that he didn't have any signs of an infection. We were discharged with instructions to just watch him & if it happened again follow-up with the pediatrician or come back to the hospital. They said that unless they saw the shaking there really wasn't anything they could do. Grrrr.

I know that what was happening with him was not a normal thing to have happen. And being that today was the second time it has happened, and was worse than the first, I am sure it will probably happen again. And so it's a waiting game as to whether he'll have another episode or if it really was a fluke thing. Seriously, can my kids STOP causing me to freak out!

A New Blog

2010-08-20T14:45:00.003-04:00

I love my blog! But lately Our Ordinary Stories has started to lose it's family identity. It started as a blog simply about our family & our everyday stories, but I've been doing more posting lately about food, things I find that I like, our attempt to be greener, and now reviews & giveaways. I really like writing about those things too, so I decided to give them a home of their own.

I am excited to introduce Spoons, Spades & Stitches!

So, what will you find on Spoons, Spades & Stitches? Cooking, cleaning, gardening, baking, sewing, crafts and other topics related to me trying to become more domestic. I'm also going to use this blog sort of like a bookmark for all the awesome things I find on the internet that I want to try later on . All my future reviews & giveaways will also be done over there, rather than on Our Ordinary Stories.

It's just a start and still has lots of things that need to improve, but pop on over to my new (2nd) blog...Spoons, Spades & Stitches...and let me know what you think!

**And don't forget to enter the Skoy Cloth giveaway!

Potty Training Update

2010-08-19T22:13:00.000-04:00

Well, it has been one week since we ditched the diapers and I am so happy to say Julianna is doing great! I'm almost afraid to tell everyone how well she's been doing for fear of jinxing it, but she really has done awesome. She has not had a diaper or pull-up on since last Thursday morning...not even to sleep in!. We've only had a few accidents & none of them have been earth shattering for her, the house, or her anti-bodily fluid cleaning mommy. In fact (fingers crossed) she hasn't had an accident since Monday. Today, she even told me every time she had to go potty...I didn't have to ask her!

I am so happy to say that I only have 1 kiddo in diapers now, and he has awhile to go...or can you potty train a 4 month old?

**Don't forget to enter the Skoy Cloth giveaway!

The Skoy's the Limit

2010-08-18T20:40:00.012-04:00

In my venture to make our family greener, one night I searched the internet for a solution to our paper towel addiction. We seriously have a problem. I was intrigued when I came across Skoy Cloths who claimed that 1 of their cloths could replace 15 rolls of paper towels! So I kept reading...100% biodegradable & reusable...those 2 statements sold me on wanting to try some!

I was even more excited that after contacting Skoy, I was sent a set of 4 to try! They came just 3 days later (such fast service!) & were so cute.

My first thoughts were how on earth was I going to use these for cleaning? They were stiff as cardboard. But as soon as I wet the first one I was hooked. I didn't even need to use it! It became so soft! Within a few minutes I had wiped down the kitchen counter, Julianna's chair, my cabinet doors, my stove top & the sink. After each item I simply rinsed the cloth & used it again.

I loved that the pack contains 4 different colors. The purple one is Julianna's. After every meal (or snack) she asks for her purple paper towel (she hasn't kicked the name yet...haha!). The blue & orange ones we use around the kitchen & first floor, and the green one is reserved for Will (who will be starting solids soon & will need a good face & hand wiping after meals).

So what do we use the Skoy cloth for that we used to use paper towels for? Wiping counter tops, wiping down the stove & fridge, wiping off the table & Julianna's chair, wiping Julianna's hands & face, cleaning up spills (even though it has to be wet when you use it, it holds a ton of liquid from spills!), and a number of other things. We still use paper towels as napkins (hoping to get some cloth napkins soon) & to put our toast on in the morning (a bad habit leftover from the days of no dishwasher). The cloths can also be used with cleaners.

To keep using the cloths all you need to do is disinfect them. How? You can put them in the washing machine, the dishwasher or in the microwave...yep you can microwave them to kill germs. I roll mine & put each one in a section of my utensil basket in the dishwasher whenever I run it.

So how much does this greener option cost? Less than I thought! Just $6.99 for a 4 pack. About the same as 6 rolls of paper towels. So if each cloth can replace 15 rolls of paper towels...that's a big savings!

HERE'S THE BEST PART....drum roll please....dadadadadadadadada...Skoy is going to give 2 of my readers a set of Skoy cloths for free! To enter, simply leave me a comment telling me one thing your family is doing to be greener (this is mandatory). Easy peasy!
Want more chances to win? Do any of the following (leave a seperate comment for each):

Visit the Skoy website & tell me which of its many benefits appeals to you the most.
Follow Our Ordinary Stories via Google Friend Connect in the sidebar or tell me if you already do.
Vote for Our Ordinary Stories on Top Baby Blogs or Top Mommy Blogs (or both) by clicking on the buttons in the sidebar. You can do this once a day (leave a comment every time you vote).
Put our button anywhere on your blog & leave the link to where it can be found.

The giveaway ends next Wednesday, August 25th at 11:59pm EST. US residents only.
Good Luck!

**And check out my newest blog, Spoons, Spades & Stitches...all future reviews & giveaways will be posted there!**

The Worst Gift EVER

2010-08-18T10:34:00.002-04:00

I was at a major loss for today's post. I really could not remember what the worst gift I ever got was. So I decided to make up a bad gift for Julianna & take pictures of her with it. This is about how this morning went.

Me: Julianna, Mommy has a present for you!

Julianna: *gasp*

Then she saw the toaster.

Oh, it's a joke! Haha!

Haha!

Ok, now seriously, where's my real present?!?!?!

I did giver her a white chocolate sucker after I tortured her with my photo shoot. I'm not that mean of a mommy!

If you want more info on Whatever Wednesdays click here.

Mommy Bread

2010-08-16T15:16:00.004-04:00

I had several people contact me about what recipe I was using to make my bread, so I decided to go ahead & post the recipe along with easy to follow directions (I think they're easy).

Mommy Bread (that's what Julianna calls it)

Recipe makes 2 loaves

2 cups warm water
1 packet quick rise yeast
2 tablespoons sugar
2 tablespoons butter
3/4 tablespoon salt
5 cups all-purpose flour + 1/4 cup for kneading

Put water, sugar & yeast in a bowl and whisk together. Tip: yeast that's kept in the fridge will rise better than yeast kept at room temperature.

Wait for the yeast to proof (I usually wait about 15-20 minutes). It's ready when it has a nice thick foam on top.

At this point I literally just dump my flour, salt & butter into the bowl. I use my mixer with a dough hook to mix my dough, although if you wanted, you could mix it by hand. The dough is mixed well enough when it forms a ball. There should be very little dough on the dough hook or stuck to the bowl.

At this point I cover the bowl with a clean dish towel & set it on my front porch. It needs to be set somewhere warm to rise & with our AC on it just doesn't rise well inside. Let the dough rise for about an hour. It should double in size.

After the first rising it's time to take out your frustrations! Punch down the dough. Seriously, just punch it a few times to get the air out.

Use the extra flour & sprinkle it on the surface you're going to work on. I put it right on my counter. Knead the dough by hand and then form it into a ball. Cut the ball in half. Each half will become a loaf.

Knead each half for a few more minutes & form it into a small loaf. Place each loaf into a greased bread pan.

Cover your pans (I use the same towel from above) and place in a warm spot for a second rise (I put them on my porch again). This time let them rise about an hour & a half, depending on how big you want them to get (I like to let mine rise longer since we use our bread for sandwiches).

When you're loaves are almost risen enough, turn your oven on to 350 degrees to preheat. Bake bread for 35-40 minutes depending on your oven (mine takes exactly 40 minutes). The bread is done when it's a golden color on top.

Let the bread cool in the pan for a few minutes then turn it out onto a wire rack (or the same dish towel used during rising...this is what I do. If you use the towel, be sure to turn your loaves every few minutes so they don't get soggy in one spot).

Although I LOVE yummy warm bread, if you cut bread while it's warm it can sometimes make the rest of the loaf a little gummy (or so I've read), so I always wait until it's completely cooled before slicing into it. The bread will keep for several days in an air tight container (we use gallon size ziploc bags, that I re-use for the loaves). I end up making bread about every 3-4 days.

I plan on trying this recipe with half the all-purpose flour replaced with wheat flour (another trick I've read about). If you make this bread let me know how it turns out! And if you make any changes that make it better, let me know that too!

**The original recipe I used was from The Hungry Mouse, but I have not been able to get back on the website since the day I found the recipe. I made a few changes to the volume of the ingredients (amount of flour & salt) from the original recipe I copied down.**

Rock-A-Bye Baby

2010-08-15T20:49:00.002-04:00

I just spent the last hour rocking Will to sleep in his room. Smelling his freshly washed hair. Feeling him rise & fall with each breath. Listening to his sleeping baby whimpers. Loving him. Saying a prayer for him & his miracle heart. Praying for some of his heart friends that are currently in the hospital & those that will be there for surgery soon. Taking in how quickly he is growing. Wishing the last 4 months hadn't gone quite so fast. Wondering what the next day...week...month...year will hold. Wanting to rock him to sleep every night.

Good night little man, sleep tight.

Bragging Moment

2010-08-13T14:06:00.002-04:00

I just have a minute to post & I wanted to brag a little bit. I went to a local second hand kids sale this morning (you know the type you show up to an hour before it even starts) & I rocked in the buying department! Here's a breakdown of everything I got:

Julianna
*6 jumpers (2 with shirts)
*5 sweaters
*1 pair of jeans
*1 corduroy skirt
*1 OSU outfit
*2 shirts

Will
*5 footed PJ's
*7 rompers
*2 long sleeved onesies
*1 pair of pants

Total spent on my 31 items...$95...the best part is that averages less than $3 an item AND all but 2 items are Gymboree, Children's Place, Baby Gap & Carters. I could have bought much much more, but Julianna didn't need any pants (hers from last winter still fit) & I didn't want to buy too much for Will since I have no idea how quickly he'll grow.

Ok, bragging over.

Cold Turkey

2010-08-12T21:18:00.003-04:00

I'm not talking the yummy post Thanksgiving kind that makes a great sandwich. I'm talking about the method of potty training we started using today. Julianna has been in pull-ups for about 3 weeks now & they are doing nothing for her in the potty training department. So today we went cold turkey on all pull-ups & diapers.

I know, I know, everyone says to wait on potty training until she lets me know she's ready, but seriously folks, she's ready. She spent an entire day at my in-laws house & told my MIL every single time she had to go potty. But at home, she wants nothing to do with the potty. So today, I finally hit the wall...no more money will be spent on pull-ups for her. She has an entire drawer of big girl underwear she picked out on a mommy-daughter shopping trip & that is what she will wear from now on.

By now you may be wondering how today went? Am I ready to pull my hair out yet? Does Julianna have any clean underwear left? The answers are good, nope and yes. She has been diaper free since 9am this morning and has only had 2 accidents one of which she stopped and asked to go potty where she finished going peepee (the other was while I was down at the car loading some things in it to go away, so I'm not convinced she would have had that one if I was in the house). She took her nap without any problems (clarification: she had no problems...I almost had an anxiety attack worrying about her bedding) and now she is sleeping soundly, and hopefully accident free, for the night.

Honestly, I was terrified to try the cold turkey method & tried everything else I could first. I was not a fan of possibly having pee all over my house...ew! But with a few minor changes in routine & furniture there is very little opportunity for anything cloth or carpet to get wet. I am hoping the no diaper/pull-up route works for us. Please, please, PLEASE work for us!

Something I Love...Something I Don't

2010-08-11T08:01:00.004-04:00

Today is the beginning of Whatever Wednesday...Yay! Some friends and I decided we wanted to start our very own blog hop & this is it. Each week, one of us will pick a new topic about whatever we want and we'll all post about that topic. Today's topic...something I love...something I don't.

Something I love...my mister man.

Something I don't...his dirty diapers

Next week's topic: ?

If you want to join in on the fun, just add yourself to the linky.

Ta Da!

2010-08-10T21:38:00.004-04:00

What do you all think about my fabulous new header & button??? I L-O-V-E, love it! It was designed especially for me by Becca at Jumping Jax Designs.

There's still more changes to come, but that involves me learning how to change HTML code, so it may take weeks! Seriously, weeks.

So, really what do you think of the new look of "Our Ordinary Stories"?

(And while you're leaving me a comment about how incredible my blog is looking, grab my new button for your blog!)

"Mommy Tate a Piture of Me, Pleeeease"

2010-08-09T21:31:00.001-04:00

Saving Money is Yummy

2010-08-08T21:19:00.003-04:00

I love to bake. I mean I really love to bake. I have been thinking about baking bread for months now. Homemade bread is so dee-licious! I've never done it simply because I thought it would be a lot of work. But as I read more about it, I realized it could save us a ton of money!

The type of bread we buy at the store costs $2.29 a loaf. To bake a loaf of yummy white sandwich bread at home costs about 50 cents...50 CENTS! (that's the average I got when looking at lots of stats) That's a difference of $1.79 a loaf. We buy 2 loaves a week, by baking 2 loaves a week we'll save $3.58 a week. That's $14.32 a month and $171.84 a year!

That made up my mind to start baking our own bread. Seriously, who wouldn't want to save almost $200 a year and be eating much yummier bread?? So, I searched & searched for an easy non-bread maker recipe. After weeks of searching (really, it was weeks) I found an easy 6 ingredient recipe that would require less than 30 minutes of me actually doing anything (but 2 hours still for rising). And this afternoon, I made my first loaves of homemade bread.

Don't they look yummy! Unfortunately, they look yummier than they actually are...hah! They're not bad, but I think I wrote down the wrong salt measurement because they seem a little salty. I tried to check the website I got the recipe from & it's gone! Since Friday, it has ceased to exist...crud. So I'll be tweaking this recipe myself and hopefully I can get it less salty. I plan to try a bunch of different recipes until I find one I really like. I'd also like to try some with wheat flour.

Anyone have a good bread recipe you'd be willing to share?

Goin' Wild

2010-08-06T21:49:00.002-04:00

My sister & I were tipped off to a free wild animal show this weekend in our hometown (thanks to her MIL!) and we decided to take the kids this afternoon. It wasn't anything fancy or extravagant, but it certainly entertained 2 toddlers & a pre-schooler.

Julianna & Ellie checking out the tiger.

The sleeping kangaroo was so cute.

Julianna loved watching the monkeys run around.

After I took the picture of the monkey, I realized there were signs all over the place about buying pictures of the animals. Oops. Anyone that knows me, knows I don't have the most inconspicuous camera (I take my Canon Rebel XT everywhere). So I quickly put it away and didn't take anymore pictures. The sad thing about putting my camera away was that I missed getting pictures of Julianna & Ian riding the ponies (Julianna's first time ever!).

It took up less than an hour of the day, but Julianna was still talking about it when she went to bed 4 hours later, so I would definitely call it a win.

Adorable!

2010-08-05T17:27:00.003-04:00

I love getting mail. I love getting mail even more when it's a package. And even better is a package containing something I won! Today's mail brought the blazer from es + es that I won in a giveaway hosted by Amanda at Chasing Twins in Louboutins. It arrived while Julianna was sleeping, so I of course opened it, adored it, & rewrapped it so she could open it when she woke up. It is seriously adorable! She was very excited to have gotten something in the mail!

Check out that smile! And the cute box!

The blazer fits PERFECTLY! And my clothes loving little girl adored it as much I did. After the first picture I took with the box she was running around so excited that I couldn't get her to stand still long enough to take a picture of her in it.

This is the best I could get.

Then major excitement took over & complete craziness ensued.

Now to find the perfect accessories for with it!

Time to Buy New Shoes

2010-08-05T15:24:00.003-04:00

Julianna started physical therapy again today. She did excellent and cooperated very well. Julianna's left side is much weaker than her right & besides lots of strengthening exercises for both her arms & legs, we also got a temporary insert for her left shoe (we'll have to buy one for her soon...after we check out insurance stuff).

Isn't that cute? Hah! She's supposed to start out wearing a few hours a day (so she doesn't get any blisters) and work up to wearing it all day. This means her days of flip flops, crocs, & sandals are numbered. I am obviously more disappointed than she is about it...my matching outfit, bows & shoes ego has taken a blow...haha! The insert bumps her from a size 6 shoes all the way to an 8! Since all her shoes are 6's she has to wear it right now with a hand-me-down pair of tennis shoes from her cousin Ian (which are meant for Will someday).

UGH! Definitely not girlie! The positive side of things is that I get to go shopping for new shoes for her. I love shoe shopping for her...hopefully I can find a few really cute pairs of shoes that will work with the insert.

The hope is that the insert will keep her left ankle from rolling in so badly and force the muscles in her left leg to strengthen. Once they are stronger she may not need the insert anymore, but then again she may always need an insert or orthotic shoes (hope I can find cute orthotic shoes...but the name itself makes me think not).

She also missed qualifying for therapy through our school district (once she turns 3) by a tiny little bit...so if she still needs therapy come January we'll be shopping for a physical therapist. Even with my own selfish shoe issues, we are still incredibly thankful that this is the most she has had to deal with due to her PVL.

Thinking About School Already

2010-08-04T09:18:00.008-04:00

While pregnant, Joe & I had a plan (our first mistake...hah!) for after Will was born. Julianna would start her toddler classes in May & that would give me 2.5 hours twice a week to spend time with just my little man & get errands done. Julianna is so ready for being in a school situation.

But as everyone knows, you should never make plans while pregnant and assume things will go normally...or is it just our family? Along came Mister Will, and nothing has gone according to plan, but that's ok because he's awfully dag-gone cute.

Germs once again have topped our list of enemies. After hearing multiple times, from multiple doctors how bad it could be for Will to even get a cold, we made the decision to not send Julianna to school yet. All those other germie kids make me nervous. Now I am NOT saying that all of other people's kids are germie, but I was a teacher, I know how many germs are floating around classrooms...A LOT & it only takes one sick kid to get a whole class sick. Sigh. She is so ready to be in school. Her teacher still comes out to see her twice a month, but that's not enough (especially now that the hour her teacher is here is divided between her & Will). She needs more, she loves learning!

I have been trying to "teach" Julianna some since May (I am in no way actually doing anything structured, just misc. things a few times a week). She loves it and has caught on to so many things very quickly. But she needs more.

Learning colors...she's got all but blue & red down...we're working on red now.

We've also done shapes and some numbers.

Her teacher has suggested, if we are comfortable with it, that she start pre-school in January when she turns 3. Wow. Pre-school?!? Already?!? We are so torn. She would do amazing with school. It would be so good for her to be in such a social situation & play with kids her own age (not 4 months old...heehee), and to have a structured learning environment. I think she would flourish.

This is where we hit our dilemma. We have to chose between keeping germs away from Will for as long as possible (sending Julianna to school in January would be sending her in the middle of RSV season...yikes!) and enrolling Julianna in pre-school where she will benefit so much. What's a parent to do? Luckily we still have almost 6 months before she turns 3 to figure it out. And I have decided to start using a free pre-school curriculum I found online to try and teach Julianna more than I have been. It's more structured and should only take a small portion of our morning a few days a week. I am so not a homeschooler (I know my limits) and I am definitely not an early childhood teacher (give me middle schoolers any day), but this is the best answer I have found so far to our problem. I am hoping to not fail...but would even settle for just not failing miserably.

**Once again blogger is being weird and has made some of my paragraphs all run together...sorry.

This is What You Get

2010-08-03T10:39:00.005-04:00

On Sunday, I mentioned that I had like 5 things on my "to write" list. Did I mention my "to write" list is a mental one? No? Did I also mention that since having 2 kids, my brain more closely resembles a bowl of grits rather than a normal human brain? No? Well, now you know. Needless to say, until those 5 wonderful ideas come back to me, this is what you get. Me, rambling about being forgetful & really wishing I had written those 5 fabulous topics down. Exciting stuff, huh?

So, if you too suffer from mush mind, please tell me about it! I need to know I'm not the only one out there that no longer remembers where I put my keys, my purse & even sometimes my kids (just kidding about the kids...sort of).

Pictures for Your Sunday Viewing Pleasure

2010-08-01T10:16:00.003-04:00

I have like 5 posts on my "to write" list, but today I just feel like sharing some pictures. So, here's my kiddos playing after their baths the other night.

I think this picture just screams the beginning of a little brother terrorizing his big sister! Haha!

He is already doing AWESOME during tummy time! You'd never know he wasn't allowed to be on his tummy until just 5 days ago!

1st Success...2nd Challenge

2010-07-31T13:36:00.006-04:00

Ok, so we finished our first Green Challenge...yay us! Here's a breakdown of our stand-by power assessment & our changes:

Living room- The only things plugged in all the time are the floor lamp (we use every day) & our electronics. The TV cannot be unplugged since it hangs on the wall & you have to take it down to unplug it. I cannot unplug the DVR...just ain't gonna happen. That only left the DVD player, which we put on a power strip & now we only turn it on when we are going to use it, and the laptop, which I already unplug when it's turned off.

Kitchen/dining room- In the kitchen the only thing plugged in all the time is the major appliances...so nothing to change there! In the dining room we have our small candle we use as a nightlight at night (I don't want to run into things when I get up in the middle of the night to get the occasional bottle) and we now unplug it during the day rather than just turn it off.

Playroom-The only things plugged in are the small TV & DVD player which were already on a power strip that we turn off when Julianna isn't watching her Laurie Berkner Band DVD for the bazillionth time.

Bathroom- Just a small candle for a nightlight & now we unplug it during the day.

Kid's bedrooms- We unplugged their lamps, since it's still light when they go to bed right now, those lights very rarely get used. They both have actual nightlights, but they are LED & on sensors.

Our bedroom- Yikes! We had our cordless phone charger plugged in, 2 cell phone chargers, several lamps, an alarm clock, our TV, & a fan. Now we only have 1 lamp, the alarm clock, our cordless phone & the TV plugged in all the time (I watch it nearly every night Joe is on shift). Much better. But I still want to put the TV on a power strip that can be turned off when we're not using it.

Garage- The only thing plugged in was our freezer. Nothing to change there!

Basement- Other than the dryer the only other thing plugged in was our desktop computer, which we never use so we unplugged it.

All in all, we really didn't have to change much...we were already doing pretty good!

Challenge #2 Reusable Bags

This one is going to be tough for me. I am such a fan of plastic grocery/store bags. I use them for everything...to line our small trash cans, to pack Joe's lunches (he brings them back home & uses them multiple times), to occasionally wrap a terribly smelly diaper in (I KNOW this is really bad...that's a whole other challenge), and so much more.

Not only am I going to try to switch to reusable bags, but I am gonna go one step further & make some of my own reusable bags! I have a super easy bag pattern & some scrap canvas so why not make a few. And besides by making my own I can easily personalize them using some of my other fabric scraps and they can't be mistaken for someone else's.

I am actually hoping to start making these today because my sewing machine is still sitting out from when I made Julianna some dresses last weekend (I really should have put it away...but I knew I as going to make bags...yeah, that's it). I think a bigger challenge than me starting to use reusable bags is going to be getting Joe to use them as well. Well, I guess it wouldn't be a challenge if it was easy.

Balloons!

2010-07-31T09:26:00.005-04:00

We took the kids to the annual hot air balloon launch last night. Oh my gosh! Julianna loved it! I was so surprised by how excited she got. I really thought it would hold her attention for 30 seconds, but she clapped for every balloon that went up & waved to the people in the baskets. She was so cute!

Will...not so enthralled.

She needed a higher view.

There were more than 40 different balloons.

Julianna loved the ladybug balloon.

She just couldn't stop watching them all take off.

This has to be the creepiest hot air balloon I've ever seen!

Will just loves anytime he gets to go away...which isn't very often.

Julianna was not happy daddy made her stop watching the balloons to take a picture with mommy.

We had so much fun and Julianna has not stopped talking about the balloons. I can't wait for this evening and hopefully we'll be able to go outside & see them from the house.

Things Are A Changin'

2010-07-29T13:22:00.003-04:00

As all of my avid readers (yes, I mean the 10 of you that consistently visit my blog...haha!) have I'm sure noticed, Our Ordinary Stories has been having a sort of an identity crisis. I think I have changed the look of the blog about 20 times in the last few days. I just can't seem to find something I like. I still don't like how it looks, so I entered a giveaway at Webbisodes to win a blog makeover. I didn't win the makeover, but I did win a custom header, blog button & text box! I am so excited to finally get something totally unique & professional (you know, not made by un-techy me using a basic paint program)!

Also, I have been thinking about starting to do reviews. I wasn't sure if this was a direction I wanted the blog to go in, but thought I would give it a try and see. I am very excited to say that I have my very first review in the works! AND the "soon-to-be-announced company" offered several of their products for a giveaway! I am very excited about the review, not only because it is my first, but because it fits in so nicely with our attempts to become a greener family. I know you will all want to stay tuned for details.

I want to assure everyone that despite the fact that Our Ordinary Stories will soon have a new look & be joining the ranks of mommy reviewers, you will still be able to get your daily dose of our family's ordinary stories (Have you noticed I'm back to blogging more regularly? Of course you have!).

The Details

2010-07-28T21:30:00.002-04:00

There really isn't much to report on Will's cardiology appointment yesterday. Did you hear me??? NOT MUCH TO REPORT! That means nothing bad! That is the first time that we have seen Dr Awesome since March that we have nothing bad to tell everyone about. Sigh.

But here's the details. Will is now a whopping 13lbs 6oz...just 2 ounces shy of my goal for him (13.5 lbs). He is still eating pretty well & Dr Awesome was really happy with his weight gain. His coloring looked very good and although his murmur (the noise made when blood moves through the spot where his aorta is still pretty tiny) was still pretty loud, Dr Awesome said Will's clinical exam was so good he didn't even do an echo. Another first! The first time we have seen Dr Awesome and not had an echo!

I am so thankful for all this improvement...words cannot even begin to describe how happy I am over it. I know I've said it before and I'm sure I'll say it a million more times, but his little heart is totally a miracle! I know things may not always be so great, but I am going to bask in this moment of my little man's wonderful strong heart working.

**Please keep 2 of Will's little heart friends in your prayers...Jacob is on track for his second OHS to happen in about 6 weeks (he's 9 days older than Will) and Baby Hannah had her second surgery today to get a pacemaker, her first OHS was at just 5 days old (she is now 3 weeks old).**

Woohoo For Tummy Time!

2010-07-28T10:48:00.003-04:00

Will is finally allowed to have tummy time! Which works out so nicely since he can now roll onto his tummy (I would spend 90% of my day turning him over if he still wasn't allowed on his tummy). Dr. Awesome felt his heart is working well enough for tummy time to no longer be too much of a strain on it. Yay!

Now to start building up those arm muscles, gotta get some guns to make all the girlies swoon.

Pizza Night

2010-07-27T21:12:00.005-04:00

Tonight was homemade pizza night. Julianna loves to help cook, and tonight she had a blast.

Cheese on the pizza...

...cheese in the mouth.

Pepperoni on the pizza...

...pepperoni in the mouth.

Caught sneaking pizza toppings.

And what's a girl to do while the pizza is baking? Play with Mr. Potato Head parts of course! Daddy also got into the game, but I was nice and didn't post the picture of him with the bright red Mrs. Potato Head lips. Heehee!

Yummy goodness!

Dee-licious!

Will had fun too, despite not being able to enjoy the yummy pizza!

Rollin' Like a Tumbleweed

2010-07-26T23:01:00.004-04:00

Ok, so not quite like a tumbleweed, but Will decided today would be the day he'd finally roll from his back to his belly...and I missed seeing every time he did it. I sat next to him for almost an hour while he layed on his side...but he never rolled. I went into the kitchen to get a drink and when I came back he was on his belly. He rolled over about a half dozen times and I never saw it. Maybe tomorrow I'll see it...and this time the video camera will be right there with me (that should pretty much guarantee I don't catch him doing it...ha!).

Will has a cardiology apointment tomorrow. If the remaining section of his coarc is the same or worse (as seen on the echo) then he will get scheduled for a cath. Please say a prayer tonight (or tomorrow morning) for improvement. I'm not ready for another hospital trip yet.

And the Thunder Rolls

2010-07-25T21:08:00.002-04:00

I'm the weirdo outside watching a storm approach...last night's storm clouds caught my attention and the lens of my camera.

Found It!

2010-07-24T14:58:00.008-04:00

Since having Will, I have commented multiple times about the lack of cute boy clothing in stores. Buying clothes for Julianna was always easy, there are so many cute girl things. Everything for baby boys has puppies, and trucks, and sports all over it.

Over the past few days, my love for Etsy has been re-kindled (Erin & I had a short lived Etsy shop a few years ago). I started browsing some of the kids clothes & I found it! I found something cute for baby boys. Check out this hat...

Isn't it adorable! It's from We Choose Joy, which makes unique and environmentally friendly(fits into my goin' green phase) kid's clothes. Seriously, are these onesies not the cutest ever??

And even better, you can buy sets that include matching shoes!

I am thinking that come fall Will just might be sporting something from We Choose Joy.

Someday She'll Realize

2010-07-23T14:06:00.002-04:00

Just how lucky she is that her mommy can sew her adorable little things.

I made Julianna 2 reversible pinafores (which I am going to blog about later today) and matching ruffled bloomers yesterday. I got her to put one on just long enough to snap some pictures with my cell phone yesterday. Today, I asked her if she wanted to wear her new pretty dress that mommy made her. Her answer...

"NOOOOOOOOOOOOOOOOOOO!! No pretty dress!!"

And she proceeded to run away from me and the pretty pinafore (in just a pull-up) as fast as she possibly could and continued to scream "No pretty dress! No pretty dress!"

Someday...sigh...she realize how lucky she is that her mommy can sew her adorable little things,but by then I'm sure she'll look silly in a pinafore and ruffled bloomers.

It's Not Easy Being Green...

2010-07-20T21:59:00.006-04:00

Or is it? Our family is about to find out. We've been talking about becoming "greener" for quite awhile now and have made some basic easy changes. We only use recycled paper towels, I try to buy green cleaning products, we use energy efficient bulbs in some of our lights (sorry, but candle bulbs cannot be replaced), and we recycle everything we can. but we'd really like to do more.

We decided we need to take baby steps (drastic changes scare me & I think they just set you up for failure sometimes). And so we begin our "Green Challenge".

I saw on another mom's blog, that they choose one eco-friendly challenge to do each week, in the hopes of becoming greener. Well, I'm not sure we could handle 1 a week right now, so we're going to do one every 2 weeks. If you'd like to join us in this journey to green, feel free to use the "Green Challenge" button on your blog, and then blog about how you do with the challenges. Also, if you have a suggestion for a green challenge, please e-mail it to me (e-mail address in side bar).

Challenge #1 Stand-by Power

Stand-by power is the power that electric devices use while they are not turned on, things like lamps, radios, chargers, toasters, etc... 1 device may not use up a lot of power if left plugged in, but if you have 20 things plugged in when not in use, the electricity starts add up (and so does your electric bill).

Our challenge is to assess every room in our house (including the garage and basement) for stand-by power suckers. Then, we'll decide what things can actually be unplugged and which ones need to stay plugged in (I am so not unplugging our dvr!). I'll let everyone know how we do. Let me know if you take the challenge too!

*If you join the challenge & blog about it, please link back to my challenge post. Thanks!

Computer Mayhem

2010-07-19T13:38:00.004-04:00

My lack of posts since last Wednesday has actually not been entirely my fault. Joe was off for several days (which always means I am on the computer less), but our laptop has also decided it is finally reaching the end of its life.

I know I overworked it this past year (I may, or may not, have neglected to turned it off for ummm, the several months I was on bed rest). It's performance has slowly been deteriorating. And this weekend it decided it had had enough. On Friday, it just completely froze up. On Saturday, we got it running again, but it kept shutting down randomly. On Sunday morning, not all the keys on the keyboard worked. By last night, it was working again, so I wrote a post just catching up on what has been going on lately, and then it shut down again. ARGH!

We have *gasp* started the search for a new laptop. It's kind of sad for me, I love my computer (it was the first credit card purchase I ever made!). But I know it's time to move on. It's been a great little laptop for the last 5 years, and has put up with a lot of abuse, including toddlers spilling things on it, being dropped on the floor, and being yelled at a multitude of times.

So, before it shuts down again, I'll do a quick update on us. We finally bought all our plants for the landscaping in front of our house (ooh, exciting stuff, I know). We went to our second heart group get together. It's always nice to talk with parents of other heart babies & see how well their kids are doing. Joe & I were going to attempt a night out alone, but that didn't happen. Will is doing great. Julianna is SLOWLY potty training, but that's going to be a post all in itself!

Does anyone have any suggestions for a good (but not too pricey) laptop? I'm not an apple fan (being in education I've used them plenty & just don't like them).

Why I Still Go To Preemie Parent Meetings

2010-07-14T21:41:00.003-04:00

Ever since Julianna was 2 months old, I have been going to the monthly meetings for parents of preemies at the NICU she was in. Sometimes, the topics aren't really relevant to me, but I go anyway (partially because it's its one of my few nights out alone!). Tonight's speakers were the two OT's that Julianna saw, Mary was her OT while in the NICU and Stacy was her OT for 9 months once she was home.

After the meeting, I spent quite awhile talking with Stacy about Julianna and then about Will. She was so excited to hear how well Julianna is doing, but said she was disappointed Julianna didn't get PT intervention sooner than she has (she has yet to have a PT session since qualifying over a month ago). She also gave me several things we can do with Will, since he isn't allowed tummy time, to help with his development. She also told me that I can get Will into the "Yes, You Can" program for therapy, which means he could possibly see Stacy for his OT once he's cleared for it. That would be great, because we already know her and loved having her work with Julianna.

She and Mary are also talking to the social worker in the NICU about some other programs Will might qualify for to help with getting him therapy and other things. I was surprised that the social worker at AC's never mentioned it to us, so either she knew Will wouldn't qualify so why bother with it, or with everything going on it was just "missed". Either way, I am willing to do whatever I need to to get him all the help he needs.

This isn't the first time I've gone to a PPC meeting and come away with some important information. Last spring, the director of Julianna's early intervention school spoke and that's how I found out Julianna qualified to go there and should have been since she came home from the hospital. Because the meetings have people that have had preemies and dealt with medical issues, they can also be filled with really useful information.

Leaving the meeting tonight with all the information I did, that could help my non-preemie kid, is the reason I still go to the preemie parent meetings.

Comparing

2010-07-13T22:58:00.004-04:00

I know moms shouldn't compare their kids. I'm talking about comparing your own kids. But with 2 kiddos that both have had medical issues, weight, feeding and developmental issues and whose due dates were only a day apart, it's hard not to. I often find myself looking in Julianna's baby book to see what she was doing by this age.

I compare what milestones they each hit at this age (Will is behind, but since he's still not allowed tummy time, I'm not surprised). I compare how much they were eating (Julianna was a little piggy compared to Will, but he's only about an ounce a bottle behind). Julianna was sleeping all night by this age (Will is close, some nights he actually sleeps all night...wish I could).

I also compare their weight. Since Julianna was a preemie, she was often far below where she should have been on the charts. Will is also not where he should be, however he was in the 17th% as of his last appointment with Dr. M! Will's 11lbs 10oz was actually a few ounces more than Julianna at the same age. He is about 1/2 an inch longer. But looking at pictures of each of them I would never guess he weighs more than she did!

Will and Julianna at the same age (hers adjusted)...and he weighs more than she did!

I think he just looks so tiny compared to her! Once Julianna started to put on weight, she did it very quickly, so I am kind of expecting the difference in weight to start to widen. In order for Will to keep up, he has to be at least 13lbs 7oz by his appointment with Dr Awesome the end of July. I am hoping he can manage it! But he has to start eating better again!

Eat boy! Eat!

It's Hard When You Remember

2010-07-12T16:49:00.004-04:00

Will is such a typical baby. He is eating well, growing, talking up a storm, and smiling and laughing constantly. Even though he gets meds twice a day and sees his cardiologist every 6 weeks, it's still so easy to forget sometimes that he has Shone's. I mean, it's always in the back of my mind, and it makes me a much more nervous...um...cautious mom, but still, there's times I can almost forget.

Since the day Will was diagnosed a week before his birth, I have been in touch with other families with little ones (& big ones) with CHD's. It is so helpful and reassuring to hear the input of parents of "older" kids and hear ideas that worked for them. It's also been helpful to meet parents with kiddos Will's age. We've met Jacob who is just 9 days older than Will and has already had several heart caths and his first OHS. And I met Amy, who was still pregnant with her little girl. This past week Hannah arrived and today, at just 5 days old, is having her first OHS.

I find myself, although not knowing these families for long, checking my computer frequently for updates and the good news that the babies are doing well on surgery days. Will did not have to have OHS, but that doesn't mean it has been completely ruled out as of yet. It will all depend on how well his heart does as he grows. And so far it is doing AMAZING!

It is so very very hard when you remember what could happen and that although Will seems so typical in many ways, he will always be a heart baby and therefore not be typical.

Pictures of My Chickens...er...I Mean Children

2010-07-10T22:18:00.005-04:00

I am trying so hard to get back into my daily blogging (ok, I'd be happy with every other day again), but it's just so hard to find time most days. And then the days I do have time, I often find myself at a loss for things to write about. I mean I'll start writing something and then re-read it and think "who the heck would care about this?". So I delete it and decided that having no post that day is better than the gibberish I had just typed.

Today is one of those days where I have time to write, but just don't have any interesting topics. So, instead I will just distract you from my lack of witty interesting to read posts with adorable pictures of my ADORABLE children (seriously, I just typed "chickens" instead of children and had to fix it, pretty sure pictures of chickens would not be the way to go here).

Julianna asleep during lunch while camping over the 4th.

Attempt #1 to fit his entire fist in his mouth.

He is a persistent little man!

This is what happens when you take away daily TV, and then let your daughter watch old Mickey cartoons...they are AMAZING to her. She didn't move for almost 40 minutes!

Routine Maintenance

2010-07-07T22:22:00.003-04:00

I started putting together a daily routine when Julianna was 6 months old (3 months adjusted). I had a daily routine for both her and I which included her feedings, my eating, her naps, my housework, free time for me, playtime for both of us, and much more. Well, that all went to heck in a hand basket when I went on bed rest (OK, so maybe it went south a lot earlier in the pregnancy). Will is now about the same age Julianna was when I stared a daily routine, so I have begun the process of getting back into a daily routine ad tweaking it until I find one that works for us.

Things I am trying to fit into our routine:
~Will's feedings and naps (we've started having nap times...and so far so good!)
~Daily household chores (dishes, cleaning, laundry, etc...)
~Crafts, activities & lessons for Julianna
~Playtime
~Time to bake, cook & make some of our own foods (salsa, jams, etc...) again
~Time to blog more frequently again
~Time for exercise (yuck)

Things I am trying to cut out of our daily life:
~TV (I got really relaxed with TV time while on bed rest, but it's easy to cut out in the summertime!)
~Wasting time (I often come to the end of my day and realized I accomplished only a fraction of what I wanted to simply because I just didn't do it)

I am getting back into a routine slowly, I don't want to deal with either kiddo having a completely breakdown over a massive change. Will's feedings and naps are the first thing I've been working on since it will determine how everything else goes. So far he has drastically improved his sleeping habits! Instead of 6 or 7 random short naps during the day, the last 2 days he has taken 3 longer naps, which makes for a lot more time to accomplish other things!

Although this is a slow process, I am hoping to have a routine in place by the end of July. Wish me luck!

Hot Weather = Dumb Me

2010-07-06T15:21:00.003-04:00

I think this hot weather has melted my brain and made me dumb.

Here's an example, twice, while doing laundry, I forgot to start the dryer and went down an hour later to still wet clothes. I also left the lid open on the washer once, so it filled, but didn't run, and I had to wait another 30 minutes till I could start another load.

Another example, I wrote a blog post before we went to the camper for the holiday weekend and I forgot to post it (it's no longer relevant so it won't get posted). It was good, I was happy with it and now it's been junked, because it should have been posted last Friday.

The saying "you'd forget your head if it wasn't attached to your shoulders" TOTALLY describes me these days. I must find a cure for this new onset of ignorance. I'm thinking just don't leave the safety of my AC.