Rosie Cheeks…

Lucy is sporting that post transfusion glow tonight, she looks warm and radiant.  Our day was long, eight hours long, but uneventful as far as transfusions go, thank God.  Day med was busy, the lab work got a little confusing, the pharmacy made an error on one of our bi-weekly scripts, all of my electronics ran out of power or were unable to connect to the hospital internet for one reason or another, and the scale in day med was broken and reading numbers much higher than I like to see(but then again doesn't it always) which had us taking a field trip to our favorite sunshine module to get weighed.  There was a time when issues like these would have gotten to me more.  Sitting through hours and hours of infusions is not exactly my idea of fun, but I will do it over and over and over again because it’s what she needs.  Lucy was a doll baby and slept for five hours this afternoon, oh yes she did!  She even slept through being transported from Day Med to the MRI suite, amazing, I know.  We had to move after 6:00 pm as day med was closing. 

My heart was heavy today as I watched blood drip ever so slowly into our little girl’s body.  Friends of ours said their final good-bye to their little girl today.  Please keep the Dunne family in your thoughts and prayers.

Time flies…

Whether or not we’re having fun, time flies these days.  Our days have been a mix of fun and exciting, and chaotic and worrisome…what else would you expect!?!

Lucy is in need of a blood, thankfully she is scheduled for transfusion tomorrow. She is beyond white in appearance, she looks, for lack of a better description, translucent.   There are times when I look at her and it takes my breath away how pale she really is.  Her autonomic nervous system is an even bigger mess and we hope that by giving her blood things settle down a bit for her.  Her energy levels are lower than her normal low, being anemic isn’t helping. 

Lucy has had a combination of not so good and not so bad days.  The massive increase in Keppra appears to be doing its job, please please knock on wood.  The “Keppratude” is not bad, in fact Drew and I joke asking if it is possible that she is paradoxical to Keppra, we have had more days during the past week where she has been as sweet as pie.  For those of you who don’t “really” know our girl, we describe Lucy as being mostly irritable and sometimes happy.  This is just who she is, and we love her!  So to have days where she is mostly happy and sometimes irritable has been a pleasant change.  All joking aside, we are hoping that this is an indication that the meds are working.

We are nearing the end of the school year for 3/4’s of our kiddos. Translation, our calendar is full of events and activities that I can’t seem to keep straight or remember when they are happening.  Drew is working on loading this information onto my calendar so that I can freak out even more when I get a reminder that I forgot an event, thanks babe.

An update on our refrigerator, in case you were wondering, it’s fixed.  We had a power surge as a result of a storm the day before the frig died, which fried the mother board on the back of our refrigerator.  Since when do refrigerators have a mother boards? We paid the repair man for diagnosing the problem and then promptly ordered the part we needed off of Amazon, saving ourselves a few hundred dollars in the process.  What would we do without Amazon?

Consider yourself sort of informed.  Thanks as always for your love and support, thoughts and prayers, we appreciate them very much.  And now… I am going to bed, tomorrow is going to be a long day.

What Kind of A Mother Are You (In the Spirit of Mother’s Day)…

Not sure if you have seen the most recent cover of TIME magazine?

 

Media has gone and done it again, they are trying to define who we are.  I will admit that I have not read the entire article, mainly because I don’t have time/TIME…ha. But it did spark my interest, because according to TIME magazine I guess I fall under the category of being an attachment parent and I didn’t even know it.

In my real life, where media dose not define me, I am a mama who gave birth naturally to 4 kiddos, two of which were water births.  I breastfed all of my kids well into toddlerhood, even tandem nursed Megan and Jack, and Sophie and Megan.  I was an anti-formula mama for as long as I could be until I was confronted with the reality that our youngest needed it to survive.  I admired those who cloth diapered their kids, but never did it personally. I found the convenience and cost of LUVS diapers to fit our lifestyle well.  I own more slings and baby carriers than I do bras, and was so sad when Lucy had to have a central line because it was just too challenging for me to wear her in a sling anymore.  I buy organic when I can and when the prices fit our budget.  I love to cook healthy and nutritious meals for our family and pride myself in doing so, but will admit that it is not as easy to do given our current circumstances.  Eating is essential to living, but when you have a child who can not eat orally it essentially changes your life.  I am not anti-fast food, in fact we prefer quick service dining for oh so many reasons.  I am an environmentalist in the loosest sense of the word.  Drew jokes with me that we are environmentalists who throw away more garbage every year.  You should see the amount of medical waste we have on a daily basis.  We recycle as much as we can, but we use disposable products (minus disposable dinner ware, eek…it’s just not my thing, I don’t care how convenient, life is too short to eat off of paper plates!) now more than ever!  We slept with all of our babies when they were born because it felt right, and because who wants to physically get up in the middle of the night to nurse a baby. Yep, call me what you want, I’m lazy.   We got wise and bought a co-sleeper bed when Sophie was born.  I loved that she could sleep next to me but not in our bed, this mama needed her space and to be able to reach over and touch her husband without having a little person in between us, especially after being pregnant for nine months.  We vaccinate our kids because we feel it is the right thing to do for all of our kids even Lucy, but we along with the guidance of Lucy’s medical team pick and choose which vaccines are most important for her.  Our kids very rarely watch television, I am not anti media, I love a good intellectual, and at times not so intellectual, show or movie.  We love, love, love Netflix.  I love that I can monitor what our kids are watching and I love that we have the freedom to pick and choose the shows that we see fit and fit our schedule.  I choose to limit our kids screen time to just a few hours on the weekends(this can be a very liberal few hours some weekends, a parent’s got to do what a parent’s got to do :) this includes video games.  I do this mainly because I want our kids to be kids and use their imaginations to play, craft, create, invent,  run, jump, swing, bike, read, role play…If truth be told, we very rarely have time to watch television, we have too many other things that we need to do or would rather do. I love order more than chaos, but anyone who knows our life is laughing at this statement.  I love my husband, my kids, our family, our life, and try my hardest to give it everything I’ve got, but some days I have more to give than others.  Moderation is the key, or so “they” say, but I am a passionate person and moderation is sometimes difficult for me to achieve. I am sort of an all of nothing kind of gal, sort of. I’m not one who easily defines herself as being this that or the other, I’m more eclectic. I like to take bits and pieces from one idea or another and use them in our life as I see fit.  I admire differences, without it what would the world be like? I believe very strongly in following your heart when it comes to choosing what is right for you and your family.  I am a Christian mama who by no means has this whole parenting thing figured out, but I trust that God does.  

Mothers day….

What do I love most about my mom…Have you met my mom, what’s not to love?  She is one complex woman, yet so practical!

My mom believes in us, in me, in our abilities to do anything we put our minds to!  Never doubting, that we can and will do it. There are so many more things about my mom that I love, but this, this is what I love most about her, she believes in us!

Motherhood is an art, a gift, a calling… it is my hope and prayer that as a mama I will mother my kids so that they too know that I believe in them.

To all of the Moms we know and love,

Happy Mother’s Day!

If my kids had superhero powers…

Jack would be able to read you like a book.

Megan would coat you in sweetness and win your heart in an instant.

Sophie would be able to talk you in circles in no time, ultimately convincing you to give in to whatever it was she wanted.

And Lucy would be able to demand anything she wanted and have you get it for her in a blink of an eye.

What about your kids?

Issues…

(This picture has nothing to do with this post, it is just a random adorable picture of our girl with her daddy.  Yes, those are feathers in her hair :)

Drew and I flew threw Costco last night, from the time in to the time out of the store, 20minutes!  Impressive, we know.  We arrived at 6:17pm and had to pick up 3/4’s of our kiddos twenty minutes away at 7:00 and 7:15pm respectfully.  We were only a few minutes late getting the kids, we forgot to factor in the time it takes to load an entire cart of Costco groceries into our van around a wheelchair and a walker.  How’d we do it, no kids in toe or a wheelchair, and we can walk fast.  It also helped that we needed everything, so no list necessary, just grab what we usually buy and head to the checkout.

We came home and unloaded everything only to learn that our refrigerator was warm and our freezer even warmer…ugh!  Needless to say I am waiting on the appliance repair person to come and take a look at it this morning.  What I also didn’t realize is that my loving husband is one appliance repair away from losing it, well not really, but kind of.  Last week it was our AC that needed repair, my laptop is/has been giving us grief for quite some time so we have been talking about our needs and how to cover those, our new van needs to go back to the dealer to have a part replaced and the airbag sensory adjusted again, it was just in for service last week Friday.  And by the way, does anyone have a hay bailer that we can borrow to mow our lawn .  It’s not so much the finances, although it’s never fun to write a check for repair costs, it’s more the time that it takes to address all of these issues.  We are short on time, and our list of things that need our time is growing.  Who on God’s green earth does not have this problem… we’re normal, right!?! 

Lucy’s is experiencing plumbing problems of her own, her gj-tube has stopped draining altogether and is in need of replacement.  Of course it’s Friday so it’s imperative that we get it fixed today, not to mention that she is uncomfortable.  We are scheduled in IR this afternoon, and so begins the process of figuring out who’s going to be where and when.  

Please know that I write all of this not for your sympathy, but to relay the humor and irony of the everyday.  Drew and I know that one day we will look back on all of this with nostalgia, we love our life broken refrigerators, gj tubes, and all.  

These days…

The weather in our neck of the woods has been a bit unusual, one day we are running our air conditioner the next day the heat is on.  Our days are kind of like the weather, unpredictable.  We are so grateful for continual antibiotics, antifungals, and ethanol lock therapy, we believe that the combination of all three of these have allowed us to spend more days at home as a family of six, as our littlest one has not had to battle life threating infections as often as she has.  Please, knock on something wooden!  We are however dealing with a host of other issues that fall under the umbrella of “disease progression”.

We recently had an appointment with Lucy’s cardiologist who continued to emphasize to me how severe Lucy’s dysautonomia is,  I believe he said something to this effect, saying that Lucy has POTS is like saying a hemophilic bleeds.  Point well made!  Many of the anti-epileptics that Lucy is on have the side effect of lowering heart rates which is both good and bad.  Good in that they are helping to reduce the stress on her heart muscle by lowering her heart rates.  Bad because heart rates, especially high heart rates, are often a sign that the body is in distress.  By lowering Lucy’s heart rates with medication we run the risk of masking a symptom of more serious problems.   This combined with her severe temperature instability…well, that just makes it all the more difficult to determine if she is really “sick”.  We discussed Lucy’s declining vascular health and how that goes hand and hand with her declining autonomic nervous system.  Her hands and feet are chronically cold, very pale, and extremely dry.  Her cardiologist asked me who her rheumatologist was, my response, “Believe it or not, we don’t see rheumatology.”  His response, “Perhaps you should.”    

Seizures…ugh!  We were nine days seizure free until BAM, they struck again, and with a vengeance.  Lucy has a mixed bag of seizures in which she often has several seizures in a row with a few seconds break in between which are then followed by a sleepy then grumpy postictal period.  She has this look about her that is all too telling now, when you see it you know it’s going to be a bad day seizure wise.  Conversations were had with her medical team and it was decided that we are going to increase her Keppra dosing by more than one hundred percent, that's a lot of Keppra!  Unlike the other times that we have increased her dosing this time she appears less “foggy” and more alert,  we’re hoping that this means we are finally achieving the correct dosing.  Due to the large increase in Keppra, we were stepping Lucy up to the desired dosing. Her seizures managed to break through earlier this week so we decided to skip a few steps and go straight to the top.  We all hope and believe that seizure control is key to better days for our girl.

In spite of all things medical, summer is fast approaching and I for one, and Jack, Megan, Sophie, and Lucy for two, three, four, and five are looking forward to the lazy days of summer.