Summer Reflection Part 3

July was much more relaxed. While practices continued the only camp was an all day camp at church the older 4 participated in. They learned a lot about the rosary and it was a chance for them to get to see some of their friends again.

 But of course it was HOT. A couple of times we were concerned our air conditioner has going to go out all together. Thankfully we were just able to get away with a quick service call. We'll cross our fingers again for next year.

Corbin's inhibitor is holding steady right now, so that's kind of frustrating, but there's really nothing I can do just keep waiting for now.

July marked the end of my first college class in 13 years! Yes you heard right I took Nutrition this summer. After much praying and talking things over I've decided to pursue a career change. I'm taking my prerequisites to apply to nursing school.

Looking Forward

This older kids went back to school this week. I am so happy for them. It seemed the closer the first day got the more fighting I heard. They are all happy with their teachers (so am I!) and right now they are excited to start the school year.

The start of school also means the start of soccer season. Once again we are super busy with Jody coaching tennis, two swimming and this year we have three playing soccer. Our calendar scares me sometimes, but thankfully we have lots of people who have offered to help chauffeur kids around.

My classes started again last week. I am feeling a bit of a panic trying to get the kids ready for school, keep the house in some sort of order and keep up with my homework. I'm confident that once I get a routine it will be much better. Oh and did I mention I've taken up running?

I ran my first 5k it was ok. I'm still not really excited about running but I am really looking forward to trying to improve my time. I've also been enjoying the time on my own, it's kind of nice to have 30-45 minutes of quiet. Sometimes Clare goes with me so it's also really nice to get some special time with her.

Summer Reflections Part 2

For me the highlight of summer was our vacation to Seattle to see family. I've never been to that part of the country and since we were also going across the border to Canada I wanted another stamp for the passport!  The day after Kolbe and Clare got home from camp we loaded up, headed to KC and hopped a plane to Seattle. Yes, we flew with 7 children.

Packing meds for the boys was an interesting experience. We've traveled with factor before, but Corbin requires more than just a box of factor and a needle. We did get stopped in security, but it was because we had forgotten to take Corbin's cup of apple juice out of the back pack before it went through the machine. We later found we left a small bag of supplies at security.

This is all the gear for two boys three doses each.

Of course we did all the touristy things you do in Seattle. Went to the Space needle and the market, rode the monorail and of course ate seafood!

Kolbe and Emily at the top of the Space Needle.

Clare looking up at Space Needle.

We loaded up 3 cars took 11 kids under 12, and 6 adults and headed north. The kids enjoyed "going out of the country" as part of vacation. We managed to keep our caravan together and crossing the border with some of my kids and husband in one care and me and the rest in another without a problem!

Lions Gate Bridge.

We made a stop at Stan Lee Park to play on a beach. The Capallanos Bridges were amazing and they kids did awesome with all the walking.

This picture doesn't really do justice to the size of this suspension bridge. 

Glass deck on the Cliff walk. I was really impressed (or scared) of how well Corbin did on this.

The next day we visited the Aquarium complete with our matching T-shirts!  This is part of our group after the Beluga Whale show, we sat in the splash zone. Do you know what happens when a whale waves good bye? You get wet!

Corbin and I got just a little wet! He was not excited!

Kolbe and Clare with the penquins.

Corbin and starfish.

Of course we have many, many more pictures this would be the longest post ever if I included them all! It was so nice to spend time with our nieces and their parents too! We had such a great time and it was really hard to leave the beautiful weather and come home to temps over 100!

Summer reflections part 1

With school just a few weeks away and many teachers (including my husband!) going back to work I decided to take a moment and look back at our crazy, lazy summer.

June seemed to be all about camps. Kolbe and Clare continued to swim competitively all summer joined by the three younger girls going to the team "swim school". Becca has advanced far enough that she is also able to race and competed in two meets this summer. The first was a short course 25 meter pool the second was a long course (Olympic sized) 50 meter pool.  In her second meet Becca was disqualified from the 50 backstroke because she was too close to the lane line and pushed off of it. She was pretty upset, but we have a sure fire way to help her feel better.

We have a tradition that DQ  means Dairy Queen!

Rebecca was probably the busiest kid in June. She and Clare had basketball camp at Hayden (the high school Jody teaches at) followed by swimming the first week of June. The next week she had soccer camp with Emily and Katie in the morning with swimming in the afternoon. She slept really well those weeks!

I didn't think to take any pictures of them at these camps. This is Katie's first year to be able to go to soccer camp she's looking forward to playing this fall. Special thanks to Grandma Karen for helping us get everyone around!

We were very blessed to be able to send Kolbe and Clare to Camp Kateri again this year. It is such an amazing place and the kids make lots of new friends from all over. They both said one of their favorite parts was making it to the top of the rock wall. They are both already looking forward to next year!

Photo courtesy of Prairie Star Ranch.

Photo courtesy of Prairie Star Ranch.

It's me again.

So it's been awhile since I've written. Something about adjusting to a newborn, having four kids and a husband home from school, and some other changes I've been making (more about that later) has left me little time to write. I'm hoping in the next few weeks to start some summer reflections. Until then know that everyone here is healthy and we "just keep swimming" through our day.

Celebration Extravaganza!

It was such a beautiful weekend! Not only was the weather wonderful, but our family had much to celebrate. Rebecca received her First Communion, Blaise was baptized and Katie turned 4 this week.

I love baptisms. Bringing new life into the church, hearing the words of blessing and encouragement remind me that I'm not alone.

Thanks to Fr. Brian for getting us in before First Communion and
our Godparents left the country!

I love the smell of Chrism oil. I still find myself smelling Blaise's head, yes it still has the scent of the oil.

Blessing over Blaise.

One of my favorite parts of the rite is:
"The Lord Jesus made the deaf hear and the dumb speak. May he soon touch your ears to receive his word, and your mouth to proclaim his faith, to the praise and glory of God the Father."

What more could I ask for my newest little man?

With Godparents Aunt Tyann and Uncle Bob.

Next stop, First Communion. Becca has been waiting for this day since Clare's First Communion two years ago.  She looked absolutely beautiful!

Becca waiting for Mass to start.

Between celebrating the two sacraments and that some of my favorite "church songs" were part of the liturgy this mom couldn't help but wipe back a few tears.

Fr. Brian, Becca and Blaise.

Finally we also celebrated Katie's fourth birthday. We took advantage of  having so many of our family and friends around and made the most of the day! What do you make for a kid that doesn't like cake or cookies or brownies?  An ice cream cake of course! 

She really did have fun! Just making faces for having to take pictures instead of play! 

Just when you think you have it all figured out.

This is not the first time I've been induced. I knew what to expect, how long it should take and what I needed to do to help speed my recovery. I had it all figured out.

Morning of induction 39 weeks 4 days!

7:00am arrive at hospital
8:00am iv started antibiotics and other induction meds begin
1:30pm holding beautiful new baby boy in my arms

Well my plan was pretty much blown from the get go, but I had no idea how far off it would go.

8:30am antibiotics started
9:30am induction meds begin
1:30pm very little progress made and my doctor is held up at the other hospital. There goes my timeline!
4:30pm Doctor comes to break my water and so begins the whirl wind. This part of the story is a little lot hazy for me as I was on pain meds by now. Within 5 minutes several alarms started sounding, my nurse tried to readjust the monitors, but that didn't seem to be helping. More and more nurses started coming into the room I was given oxygen and my doctor was called back in. At some point after my water was broken baby boy put his hand on the top of his head and brought the umbilical cord down with him. After trying to re-position baby it was decided we needed a c-section. Since I don't do epidurals and there wasn't time to get one now, I was put under for the surgery. Last thing I remember is being told to breath deep.
4:47pm time listed on Blaise Alexander Madden's birth certificate paperwork.

8lbs. 8oz. 21 inches long

I don't remember a lot about the rest of the evening. I don't remember holding him for the first time, I don't remember being moved from one room to another. I remember bits and pieces and have watched video. Things continue to come to me, mostly ridiculous things I said. My husband did a fantastic job holding our little guy and documenting those hours I lost during recovery. Recovering from a c-section is much different than what I'm use to. I don't exactly sit still well. I am doing my best to follow all the "rules."

The crew coming to meet Blaise for the first time.

The next day the kids came to meet their little brother, I was in no condition to have the kids visit me the night before. We let them go to school late so we could have some time together. So few things warm my heart like watching the instant love the kids offer. They were so excited to get a turn to hold the baby, all had big smiles on their faces and rarely left the couch just so they could see him a little longer. Corbin is having a little trouble adjusting he fluctuates between being jealous to being extermely possessive of Blaise not allowing anyone else to hold him. The older kids love helping with him.

This is probably one of my favorite photos! I 

We already know like his big brothers, Blaise has hemophilia. Right now we don't do anything with it unless there is a big problem.  As to Corbin's news...his inhibitor levels went up this month instead of down so that is a little obstacle but we knew there would be some bumps in the road.

My boys. Kolbe 11 years, Corbin 20 months, Blaise 1 day!

Timing is Everything

Corbin threw me another curve ball last week. For once it wasn't medically related, he's decided he's done with diapers. Yes, I know I should be completely over joyed I mean who wouldn't be happy to have their child out of diapers before they turn two. But honestly I think his timing stinks! The new baby comes home in just 2 weeks...sounds like a recipe for disaster to me!

I really shouldn't have been too surprised. I mean his sisters all trained very early between 16 and 18 months but he's a boy, I was already planning on  actually and you'd think by now I'd be a pro. I was thinking about all the kids I've had in my care over the years and I think I've had a hand in potty training around 20 kids! Believe it or not, including Corbin only 5 of those were boys and two of those were "mostly" potty trained before they started with me. So really, I'm no expert!

I have to say he's been the easiest ever! We've had just a couple "puddles" on the floor. He was even dry all day when in Kansas City! I must say I am super impressed with that one because he was with his Dad! So here's to the prospect of being a diaperless house! (If even for a few days!)

More good news!

Wednesday Corbin went up to Children's for his monthly inhibitor level check. I was hoping they would be lower but trying not to get my hopes up. Thursday we got the news his levels went down by about half! I am so excited they seem to be dropping quickly, but it also makes me a little nervous about the next step of actually getting rid of the inhibitor.

That still seems like it will be a long time from now, probably because of the more pressing issue of baby coming in just a few more weeks! Nesting is starting to set in, wanting to get everything cleaned up and ready. Been fighting the urge to get his clothes out washed and put away, not sure where they will go just yet. So much organizing and rearranging to be done. Good thing this week is spring break, I should have some extra time to get some things ready. And of course I'll have extra hands around to help out! I'm not sure the family understands what I have in store for them. Wish me luck!

Road Trip!

With just a little over a month until we welcome our newest addition we have a few things we need to get done. One of the fun things is a little family tradition we have, making a gift from the big sibs to their new baby. So, off to Kansas City we go!

After a quick trip to USA Baby for a sit and stand stroller it's on to Oak Park Mall and Build a Bear!

Don't we all look so excited about our new ride! Well, this mom is pretty excited! 

Picking out a bear for our new brother. Grandma Karen and Aunt Cindy were able to join us! Believe it or not we all agreed on one and we don't have any duplicate bears!

This is probably my favorite part. Each kid gets their own heart to put in the bear, the staff has always been great about us taking so many hearts for one bear! We followed all the directions, warming the heart, hugging it, and finally giving it a kiss and making a wish for our new baby!

Everyone got a turn to wash the bear before the hard part....picking out clothes!

Corbin likes his new ride and gave the bear lots of snuggles! 

We ended our visit at Oak Park Mall with a ride on the Carousel. Thanks Aunt Cindy! 

This is what it looked like when we finally made it home! So tired! It was a quick trip and we weren't able to catch up with any of our fantastic friends that live in KC, but I was able to cross a couple of items off my pre-baby to get list!

War on Clutter

We're at war at the Madden house. It's a war on paper clutter. We had been losing, sure we'd win a battle here or there, but stacks of paper were on just about every surface of my kitchen counters. Then earlier this week I helped my oldest clear out several months of graded papers from his book bag. Wonder how that happened? I've decided I (we) need to set a better example.

See, I use to be so organized. Once upon a time, my tables were all clear, my files were all updated and in there proper places and I could tell you where to find things. Now horizontal space is fair game for stacking "stuff", my files are in boxes waiting to be dealt with and I may know where something is, but I have to be the one to get it. I can't just tell you where it is. (This makes my husband a little crazy.)

Now you may be thinking, "of course you have lots of paper. You have several kids in school and two home businesses." This is true, but I really believe it doesn't mean we have to live in a state of CHAOS! I do not expect my house to look like a page out of Better Homes and Gardens. But I think in our crazy schedule a little more organization could bring us some peace. I've been reading "Absolutely Organize Your Family: Simple Solutions to Control Clutter, Schedules &Spaces"

It has some good ideas, some of which we've already done. Like start planning our summer calendar, granted some of that was from necessity. Camp enrollment already started and these camps fill quickly. By having our swim meets and other activities already on the calendar we could see when a good week would be for us. Other ideas just won't work for us, and that's ok. It's not about following someone else's plan, but finding a balance that works for us. I've done Flylady I really liked it. I felt like I got things done, my house was presentable and I liked the "you can do anything for 15 minutes" concept. Just not sure it's completely for us either.

Bottom line. Somethings gotta give around here! I spent yesterday getting rid of the paper clutter in my kitchen, it felt great! The kids pitched in getting rid of papers that weren't important to them. I know it's going to be important to have their help completing and maintaining this process. We believe in chores around here. And no they don't get allowance for them. But that's another post altogether.

Finally! Some Good News!

We got Corbin's inhibitor levels back yesterday and they are lower than last month! Not just a little lower, it went from 173 to 88! It's still really high (our magic number is 10) and it may not go down that quickly in the following months. But at this point I will celebrate any progress!

Speaking of progress, I never posted how my do to list went. Well let's just say some days were better than others. Some projects got completed and others never even got started (like our taxes!). With just a couple months left in this pregnancy I am starting to feel the third trimester fatigue setting in. I know at some point I will be scrubbing the house like a mad woman amazed at the energy I suddenly have, but for now I am quite content to sit in my rocking chair with a cup of coffee and dare I say it....read a book on my kindle!

One Step Forward, Two Steps Back

Since my last post I wanted to be sure I was clear...I was trained by a medical professional before accessing the port. You should never do anything like that without training. Also, these are just my experiences and not medical advice. Please consult your medical team about your child's health! Ok on with the newest post.

Once a  month Corbin needs to get his blood levels check to see what his inhibitor is doing. It is my understanding that once the "levels" get low enough we will begin trying to teach his body that Factor 8 is a good thing! But that's still the distant future.

Since it was a day for his factor anyway, we headed up to Children's Mercy Hospital (CMH) in the afternoon to get meds done and labs drawn. After dinner we were playing when I noticed a red spot on his shirt, the site were his port had been accessed was bleeding a little. So, back up to CMH for an ER visit. By the time we were ready to draw more labs, and use a different factor product to stop the bleeding it was decided it had become too active to get a good seal with the sterile dressing. So we had an IV started.

Novo7 and pressure dressing stopped everything right away, x rays showed the port looked good and still in its original place. All good news. At 1:30 AM we go the go ahead to leave, if we wanted to. We've had a couple different times with the kids over the years, we've been discharged only to have to come back again a few hours later.

Our ER doc last night was truly awesome, he easily could have said, "well the hematologist says you can leave so head out." Instead he understood our concerns and let us stay for monitoring until Corbin could receive his next does of Novo7 if needed. Sleeping in an ER room is not the most restful sleep ever, but it sure beat driving at such a crazy time of night. He also understood my concerns about accessing the port on Sunday for our normal prophy day with all that had gone on. So when I pushed for leaving in the IV to give the port some time to rest he did. He was pretty sure the hematologist on call would not let us do it, but he asked anyway!  It ended up he didn't need a second dose and we were allowed to leave with the IV still in. See I've done this before!

It may not be necessary to give the port rest, but we are new to this whole thing and with it being a weekend and not being able to talk to our "normal" doctors and nurses makes me very anxious. I had been so confident! After accessing the port successfully twice in a row I was ready to take on the world and handle it myself! Needless to say with everything that went on this weekend I will not be doing meds by myself tomorrow, or even this week.  It's very frustrating, to not be sure why he reacted this way. Will it happen again? Right now I don't have answers.

Rest assured Corbin is doing just fine! He's been bugging his sisters all and played some video games with his big brother. (I missed my chance to get a pic of Kolbe with his DS and Corbin with a Leapster. So cute!) After a 31/2 hour nap with dad this afternoon, normal bedtime was a joke. He and I had some great one on one time this evening! Dad is working the winter sports dance. We are both exhausted, but doing our best to take turns resting.

I really had no idea what we were in for with this inhibitor diagnosis. I'm not sure it's something you can prepare for. Having an inhibitor puts you in a small group of an already small group. From what I have heard, inhibitors are different from kid to kid. What works for one may not work for another.

I guess I had thought the bleeds the would normally get would just be harder to treat. We've been blessed Corbin really didn't have many bleeds so I thought while the inhibitor might be a pain, it would not really be anything big. My thoughts are changing, this is most defenitly going to be a bumpy ride filled with many trips to CMH.  But I am confident we will get through.

Flying Solo

Well I did it. I accessed Corbin's port by myself. Without a medical professional in my home. Ok so I wasn't completely by myself, I did have my mother-in-law to provide an extra set of hands. I had been nervous about it this morning. I've only attempted to access it a handful of times, been successful three and two of those, well lets just say I barely got it. But today we did it! Set him up in front of his favorite show, currently Yo Gabba Gabba. (Which I can't stand, but if it makes him happy during the hour it takes to do his meds then I'll deal with it!) Got my sterile procedure started, Grandma made sure he didn't touch the sterilized area and we did it!

Here's a picture from Corbin's book "Infusion Time" of an accessed port.

Being able to do meds ourselves has several advantages, one is that we are free to do meds when it works for us secondly, it's really good for Corbin. While it may not be fun for family members to hold or stick him, he knows we love him and he trusts us. I have noticed he doesn't get as upset when we look at his port than when a nurse he doesn't know looks at it.

Photo from Drugs.com

How do I know this? Well, Katie (3) being such a great big sister shared her cold bug with Corbin. Any time his fever is over 101.5 degrees F it means a trip to the ER. I had it 103 degrees yesterday afternoon! See, the port is attached to a catheter in a large vein in his chest. This makes the risk of infection a little higher so we need to check everything out. Even if we feel sure the fever is about the runny nose and cough and not something more serious. We've had family with blood infections so we know how serious those can be.  So off we went to the ER for labs and antibiotics done through the port. As ports are used for many reasons I felt our local ER could handle this. Our nurse was great, but honestly I have never seen Corbin get so upset about having it accessed. I really think it's because he didn't know who was messing with him. Today he didn't but up a fight at all, just some tears and needing to be sure to keep his arms out of the way. Several hours and questions later we were released. Today we are fever and runny nose free!

Over all I still feel the port will be very good for us. We had gotten so use to being independent with Kolbe's meds it's sometimes hard being tied to someone else's schedule again. I realize there will be other things we learn as we go along and there will be other challenges. But for today I'm feeling pretty good!

A Taxing Issue

Every year I do this....January comes we start getting our tax information and I panic. I'm not even close to ready. Yes I know I have until April to get done, but I don't want to be worrying about my taxes in the last few weeks of pregnancy!  I have several boxes of receipts waiting for me to enter into my daycare accounting program. I spend hours getting all the information into my computer, I vow to NEVER get behind like that again. But I spend so much time catching up on the previous year, I want nothing to do with keeping up with the current one. Vicious cycle!  Don't get me wrong, I'm not behind on everything. I have all my parents invoices and W4s ready to go. I do know how much I was paid last year. But my expenses....well...I'll have to get back to you on that.

I know myself well, I love lists. I make them all the time. I even keep a pad of paper by my bed so that I can make them if when I wake up in the middle of the night and just can't sleep until I get all that needs to be done out of my head! I tend to make my lists too long, too detailed, I get focused too much on one huge project, get bogged down.  I know that if I just concentrate on just a couple of things a day I'll still get to cross things off my list and will actually get somewhere in the process.  In comes my new project, weekly goals.

So here are my goals for this week.
1. Spend 30 min a day entering in receipts.
2. Complete 2 loads of laundry a day. (this means folded AND put away)
3. Complete one of the other smaller tasks listed below each day.
     a. Freezer meal cooking in an hour. This week I'll be making waffles, Asian Chicken and lasagna. (if you              don't know what I'm talking about check out moneysavingmom.com)
     b.Complete curtains for downstairs.
     c. Plan next weeks menu.
     d. Update family calendar in kitchen.
     e. Print off and mail W4s to daycare parents.

So there you have it! I'll check back next week with how I did and what my plans are for the next week!

Taking the Plunge

It's kind of scary putting yourself out there. What if no one reads what you write? Worse yet, what if people DO read it, and you make a fool of yourself? Many of my friends have started blogs recently, and other friends have been blogging for years. I wondered, what I could possibly have to share. Then we had a medical issue with one of our children over Christmas vacation. After that I felt like starting a blog was something I needed to do.

As to not reinvent the wheel here is part of a facebook note I wrote about what was going on with our 18 month old.
Over the next couple weeks we (Jody and I) will probably be posting a lot of medical posts about Corbin, so I thought it might be best to explain a little. Below is an excerpt from the National Hemophilia Foundation website.

"Hemophilia A is the most common type of hemophilia.  It is also known as factor VIII  deficiency or classic hemophilia. It is largely an inherited disorder in which one of the proteins needed to form blood clots is missing or reduced.

When a person with hemophilia is injured, he does not bleed harder or faster than a person without hemophilia, he bleeds longer. Small cuts or surface bruises are usually not a problem, but more traumatic injuries may result in serious problems and potential disability."

To treat hemophilia you give doses of the factor they are missing via IV, sometimes multiple treatments are needed for the injury to heal. Teatments can be done on demand to treat an injury or on a schedule to prevent injuries (prophylaxis)

The boys have severe hemophilia we do preventative treatments to keep injuries to a minimum Kolbe does treatments 3 times a week and we had started Corbin on preventative treatments once a week. If there is an injury such as a fall more factor can be given to further help the body heal. Thanks to a to a small cut on his tongue before Chirstmas it was discovered Corbin had developed an inhibitor to the factor we give him. This means his body sees it as something that doesn't belong and fights it causing it not to work. We managed to get his tongue to stop bleeding using a different medication. 

There are times when this is all totally overwhelming, like when I'm putting away all our supplies only to realize I forgot to order more tubing for the pump. Or last night when we were finishing up our 45 min factor drip I looked at where is port incision is and couldn't help but be sad he has to go through all this. Granted, the port was coming with or without the inhibitor and will make everything much easier for him but it still made this mama tear up a little.

Never in a million years would I have thought I could do the things I do for my boys. After all, I am not a nurse. But I start IV's (we use butterfly needles), taught my 11 year old to do his own IV, I mix thousands of dollars of medications every day, I've dealt with a PICC line for Emily, I know how to work an IV pump, I've learned sterile procedure and have accessed Corbin's port with the help of our awesome home health nurse. We still have a lot to learn about Corbin's inhibitor, but we have a fantastic support team.

I've been part of the First Steps program for years, we provide support for parents with a newly diagnosed bleeding disorder, now more than ever I see the value having someone who's "been there" can be.