Wednesday, June 29, 2011

Hanging in there

Nafey magic had a purdy good day. He has eaten a good share of dry cereal through the day and started receiving pedialyte through his tube around lunchtime. They are going pretty slow with the feeds to make sure that he tolerates it well. They started at 5mls per hour (essentially a teaspoon of fluid in an hour) for 4 hours before moving to 10mls per hour and now he is at 15mls per hour. Since he is still going strong without any complaints, they are going to increase it to 30mls during the night. If all goes well, we'll start him on his formula sometime tomorrow. At this rate, we are looking at coming home hopefully on Friday.

The little guy was in some pain last night and didn't sleep all that great, so he was pretty cranky at various times, but he really perked up nicely tonight and was more of his good ole' self again. His IV infiltrated this afternoon, so they had to place a new one. Poor little guy was a hard stick today. He cried and cried but never once fought the nurses placing the IV. When they were finally successful in placing it, he looked through tear-filled eyes at one of the nurses and said "We all done now? I was a good boy". They all showered him with high fives and gifts and said that his highly uncharacteristic attitude and behavior for any kid, much less a 3 year old, amazed them. One of his other nurses from earlier in the week said, "Nathan is why I do pediatrics. For all the hard things we deal with here, every once in a while you get a kid like him and it makes it all worth it."

He's definitely not laid-back and friendly and good all of the time. He can be grumpy and refuse to talk to people at awful times. He can be ornery and hard to convince sometimes. But for the most part, he really does seem to be an extraordinarily special kid growing up in special circumstances. Alas, he's a mito kid...and due to the complexities of issues they all face, they are hands down some of the toughest kids around. Whatever they are lacking in energy production, they are totally making up for in strength of heart and spirit.

And if none of this makes sense, it is because I have had veeeeeery little sleep the past couple of nights. I think I'm going to curl up beside my precious little son and drift off to sleep soon.

Tuesday, June 28, 2011

A tubie

The little guy was taken back to pre-op and then the operating room about an hour earlier than we were expecting this morning. I have heard horror stories in the past about anesthesiologists not wanting to adhere to the somewhat controversial mito protocol when it comes to anesthesia, but we were nothing but impressed with the doctors who worked on Nathan today. They asked what has worked best for him in the past and what anesthesia we preferred from a mito standpoint and went with that plan.
 They gave him a good slug of morphine directly after surgery, so that really helped control the pain. He has received 2 more doses throughout the day to help as well. We can always tell when he needs more pain meds because he either starts breathing really fast or starts holding his breath to keep from breathing as much. Once the morphine kicks in, he is a totally different kid. We are expecting that he will be much better with less pain tomorrow.
He has been an absolute trooper. He's tired and sore, but he has charmed the nurses off and on and enjoyed his company throughout the day as long as he can still see the TV over their heads. Tonight as one of his nurses was listening to his chest, he started rubbing her arms and said "You have really soft skin." Who knew the kid knew how to flirt so early! Or maybe he gets a little more friendly with some pain meds in him. Regardless, it gave us a good laugh.

His sense of comfort in this hospital is better than it has ever been, which is both great and sad. He rarely gets anxious anymore unless something is happening that he isn't used to happening in past visits. He has been darling and sweet and kind and well-mannered. His attitude continues to amaze me with everything he has to endure. God's grace and loving hand is definitely evident in Nathan's life, and it is simply incredible to be a witness to it.
Except for his meds, the little guy has been NPO all day to give his stomach a chance to heal some. We will start feeds tomorrow and see how he tolerates them. For you tube feeding moms, we are doing EO28 Splash (Neocate). And he is pretty excited that he no longer has to take his yucky meds by mouth starting tomorrow since we can just put them in his tube.

Thanks for all your prayers and words of encouragement. They truly do mean a lot to us.

Monday, June 27, 2011

One amazing kid

Little guy was admitted this morning for his surgery tomorrow. We met with surgery a few times and anesthesia and have everything squared away for tomorrow. It has truly been smooth sailing all day, and the little guy put in a really long nap and has remained in the flat on his back position the whole time. After being going and going like crazy the past couple of weeks, today seemed to be exactly what he needed. He seemed to really enjoy being able to chose whatever movie he wanted to watch without having to share the choice with his sisters. Speaking of them, the whole clan came to visit for a bit tonight. Let's just say that two energetic girls in a small hospital room where there are multiple lines coming off their brother is not a good combination. But, Nate seemed to enjoy having them here for a short visit. Saying goodbye to them all tonight was pretty tough for the little guy.
Grammie read a couple of books to settle everyone down. She and Papa are taking care of the girls this week so Jay can be up here and at work. And my parents are coming in next week, so our kids will surely be spoiled absolutely rotten at the end of their grandparent adventures this summer. They won't know what to do when everyone leaves...and neither will we. Surgery is set for around 10:00 tomorrow. Post-op, Nathan will be moved up to the PICU for closer monitoring. They like to keep a pretty close eye on the little guy here, and I truly appreciate that. He is taking everything in stride in his general laid-back attitude. As long as he has Tebow and his paci, he can go through anything. He sure does have an excellent attitude about it all. I love this kiddo.

Sunday, June 26, 2011

Marco Island

There is something special about watching a child run from the ocean onto the beach. All children run when they get to the point where the salty water hits below their knees. They run until they reach the place where the sand is still wet from the periodic wave that comes to moisten the sandy earth and walk once they hit the dry sand. They run because they have no cares in the world...and their legs are entirely too short to walk everywhere they go.
I'm not sure what age children stop running in from the waves...but at some point, there is some unspoken rule that as you get older, your once carefree life of running along the beach's edge is from yesteryear. Maybe it is because adults are too jiggly, watching carefully to walk just the right way so to minimize the amount of thigh and stomach fat that jiggles as you make your way from the hiding waters of the ocean onto the revealing sands of the beach. Maybe the hustle and bustle of the world has been completely left behind so the desire to run on the beach is squelched with the plan to vacate from anything fast that this life entails. I'm not sure what exactly causes us to stop the carefree run from water to dry land along the way to adulthood, but I secretly wish that it was socially acceptable in our culture to do such acts. That carefree act seems so appealing at times.
Marco Island was a beautiful as ever this year. It is truly one of my favorite places on earth, and we all look forward to the sights and relaxation each June. Its a time to revamp and reorganize our thoughts...a time of relaxation that brings us home rejuvenated and ready to tackle the daily struggles of our lives once again. The key prefix being "re" in quite a few of those words..."re" essentially means "again". While living in this world where we must undertake hardships again and again, it is always good to rest your mind and body every once in a while in order to rejoin the ranks of daily life.
I have to say that this is the first year that I have truly relaxed. The kids are older and easier and Jay's parents came along to help with the littuns while enjoying God's amazing handiwork labeled as Marco was indeed the best relaxation I have had in quite some time. The girls being able to swim this year coupled with the calm waters of the gulf makes for a nice day at the water's edge enjoying a good book while peeking out of the pages every once in a while at the shenanigans of the cheelren. The girls are also at the age where they scope out the beach and find various friends to meet and play with, so that's an added bonus. It was indeed a fun and relaxing few days.
Nafey boy did great for about a day and a half before starting the downward spiral of exhaustion. He did awesome the first much energy and excitement! He loved the beach and especially LOVED the pool where he went down the water slide for the very first time...the first of about 25 times. But by the third day, he didn't want to slide and he didn't like the beach. On the 4th day, he asked to stay in the hotel and sleep. When he woke, Jay took him to the pool where he swam for about 30 minutes before asking to go back to bed. Thankfully, Jay and his dad aren't too fond of the beach and Jay had some work to do, so he didn't mind staying in the hotel with Nate a lot of the time while all of the girls basked in the sun each day. And Nate's good moments through the week were priceless. It is so much fun to see the excitement of the beach on every kids' face.
It was a great of those weeks that ended before you ever wanted it to end. One of those weeks where you try everything you can to ring every last drop from it. One of those weeks that I am hoping we can do again next year. This was the 7th year we have been able to go to Marco, and I hope that we will be able to continue to attend each summer. It was indeed what we needed.

Please keep the little guy in your prayers this week...he will be admitted to the hospital tomorrow for his tube placement on Tuesday. I'm hoping we will be home by Thursday or Friday. I'll post more pictures of Marco when I return home, but should be able to post some updates on Nate's surgery and inpatient stay through the week.

Tuesday, June 21, 2011


I meant to post something before we left for the week, but it seems that packing the kitchen sink and all other belongings for a week at the beach is a little time consuming. We are currently on our yearly vacation to one of my mostest favoritest places ever: Marco Island, FL. The weather has been perfect, the company has been superb (my in-laws are with us this time), and the kids are having an absolute blast. While jumping back and forth from the beach to the pool throughout each day, the kids are sporting quintessential beachy pink-tinged skin. I've taken tons of pics the past couple of days but won't be able to download them until I get home, but I can't wait to edit some of these pics.

So, I'll be gone until this weekend but hope to post pics and recap this week this weekend before Nate is admitted for his tube surgery next week. He will be admitted on Monday morning and the surgery will be Tuesday morning.

Until we return from the land of baby sea turtles...

Thursday, June 16, 2011

Whoever quoted "lazy days of summer" didn't have kids

This week was our first full week without school...first full week of summer vacation. Summer equals laying around sun bathing and watching all the tv you missed through the year, right? Yeah...that's what I thought too. Our prior summers have been pretty easy and sometimes a bit boring. How dare I utter that absurd word these days! "Boring". What in the world is that?

We had about 3 hours sometime after school ended to catch our breath before the madness of our schedule started once again. I honestly think we have been more busy this week than we were when school was in session...but that just makes our vacation to the beach next week all the more sweeter.

This is our week in pictures...

The kiddos on Monday morning before dropping the girls off at a local VBS. It is held at the church where Emma attended preschool and has a really neat VBS each summer...not to mention that almost every one of the kids' friends attend it each summer. It makes for one really fun week for them...and about 3 hours of semi-quiet each morning for the mama.

The little man loves to utter each morning "It's just you and me, Mama! No girls!" To which I have to remind him that I am a which he replies "no, you're a mama!" Okay, I'll take that. At least I have had tons of snuggle time with the little guy this week.
The little man has been able to watch what he wants to watch, read what he wants to read, and play whatever he wants to play each day. If he wasn't spoiled before this week (he was!), he surely will be now. I took this shot when he was watching a show...but mainly because he was complaining of belly pain and became bloated really quickly after eating a little watermelon. Since we are entertaining the stomach pacer idea, I want to take pics of his bloating issues so I can have something to compare to if we should do the gastric stimulator. Also, he has had some really weird bruising in weird places on his body lately. His platelets and h&h are fine and other blood related labs are okay, but I wonder about his clotting factors. However, he is also a 3 year old boy who may get 3 year old boy bruises. But a mother who constantly stresses about her child's health always wonders about the "other stuff" it could be. ;-)
We had our preschool friends over one day after VBS. They were all ecstatic to play with one another. Makeup and dress-up clothes were strewn about the playroom, and a mock wedding was performed. Directly thereafter, a discussion between mother and child was had of the fact that we should not kiss others on the lips, no matter what you saw Prince William and Kate Middleton do...and yes, I know you saw the bride and groom kiss on the lips in the wedding Daddy took you to of his grad student...but no, we still don't kiss our friends on the lips, even if you are pretending to get married. It spreads germs...and yeah, we just don't do it.
A wardrobe and role switch-a-roo...who's characters did not kiss one another on the lips, thankfully.
The little man had his yearly sleep study last night. He's an old pro and completely used to the entire process of being hooked up to the stickers and glue and wires and whateverelse. The only thing he absolutely hates about his sleep studies is that he has to wear 2 cannulas in his nose instead of his normal for oxygen and one for CO2 reading (however, I am still not sure how this one is needed when they have a skin thingamajigger that reads CO2 as well). He also equally hates the red thing that sits on his upper lip and reads his air flow exhales because it gets in the way of his paci.
But all that said, the little guy is that greatest little warrior I know. He fussed a bit about the 2 cannulas and red thingy being uncomfortable, and when I told him that I was sorry that he didn't like it, but he would have to deal with it for one night, he uttered a sad "okay mama" and stopped complaining. It broke my heart. Nathan has to endure more than most people do in a lifetime, yet he takes it all in stride. Often it makes me so sad that he is used to being in pain, uncomfortable and inconvenienced. But then I realize that God gives extra grace and mercy to those who need it most, and I have no doubt that our heavenly father is helping our precious son through these difficult times in his life.

When Nate woke this morning, he had a blood test to check how his breathing is affecting the rest of his body. When our sleep tech came in and unhooked the little guy from all of his gear, he finished by giving him and huge hug and telling him that he was the best patient he had ever had (I found it comical because we had this sleep tech the very first time Nate had a sleep study, but he obviously didn't remember it). It was a sincere compliment to my little boy. God's grace is evident in Nathan's life, and others are able to see it continuously by how he responds to the hardships in his life.
Please keep the Moody family in your prayers, as their precious son, Zach, passed away this week. Additionally, please pray for the Hilliard family as they continue through these difficult days after placing their daughter, Eithene, on hospice.

Wednesday, June 15, 2011

THE night

Emma was all dolled up and ready to get her dance on during her recital Saturday night. It was actually quite really, really sweet. And I have to be honest in saying that the entire recital was quite entertaining. All 3 hours of it. They perfected the line up by putting older kids in between the younger, less experienced ones. It is definitely a show I would love to see again.

My little munchkin was so excited to be able to perform, and she was uber adorable in doing so. She can not wait to get back in the mix in a couple of months.

I was so glad that I was able to get this video during her rehearsal, as it would have been nearly impossible to get it during the actual performance. See if you can spot the Emmabear...she's the smallest little munchkin in the land.

Friday, June 10, 2011

With deep sadness...

I have mentioned in the past how small our mito community is and how we all lift one another up through the good and the bad in the lives of our children. It is impossible not to get attached to these kids and families living similar lives and hardships as our own. I have also mentioned before how hard our mito community has been hit over the past year with the deaths of numerous of our little friends. It is always such a heart-wrenching time to watch these families live through our nightmares when it comes to this disease.

I have had a heavy heart over the past few days as I have learned that two of our dear mito friends have come to the difficult decision to stop all life-prolonging treatments and have been switched over to hospice care in these final days of their lives.

Please do remember and keep Zach Moody and Eithene Hilliard in your prayers as they live out their final days on this earth. And please ask God to give peace and comfort to their families as they suffer through the unfathomable pain and heartache of watching their young children pass from this earth.

Thursday, June 9, 2011

Some tough decisions ahead

I have so many thoughts and emotions going through my head that it is difficult to put it all down in words. Sometimes the emotions of all of this is indeed too much to handle. Sometimes we grow weary of having to make difficult decisions and not knowing if we took the right step or not. Sometimes we wish there was a road map that showed us what exact treatments we should try. Sometimes we break down from the weight of watching so many of our little friends pass from this earth. Sometimes we beg for God to make all of this just vanish.

Oftentimes, our faith is weak. Our trust wanes. Our outlook of the future on this earth is full of heart break. Oftentimes, we are reminded that we must surrender our fears to our omniscient God.

"Nevertheless I am continually with thee: thou hast holden me by my right hand. Thou shalt guide me with thy counsel, and afterward receive me to glory." Psalm 73: 23-24We met with Nathan's surgeon this morning. He was a delightful man who smiled a lot and seemed to have a good sense of humor. I like it when doctors make you feel comfortable around them, especially during the initial visit. After being told by several doctors that Nathan needed to have a GJ tube placed instead of a G tube, this surgeon was the first who shared my hesitancy on that plan of action and voiced his reasoning that gave me the eerie sense that he had been camping out in the "thinking portion" of my brain for a while.

Let me explain why I was never fully comfortable jumping straight to a GJ tube...(bare with me; it may get rather technical and wordy through here.)

When you are part of a small online community of parents raising kids with mito, you learn an awful lot from each other. One of the hard lessons I have learned over the past couple of years is that for the kids with worsening GI dysmotility, there are only a few steps you can take until you plum run out of steps. The main steps (with some variations along the way for some of the kiddos) is a g-tube, then a gj tube when the g-tube fails, then TPN (total parental nutrition) through central access when feeding through the jejunum fails. Due to the high sugar content in TPN and the fact that bacteria love foreign objects in the body (and throw in the fact that some kids seem to translocate nasty gut bacteria into their lines as a result from the dysmotility), TPN and mito is an extremely risky combination. A central line infection can cause sepsis and take the life of an immune compromised mito kid quicker than you can shake a stick at it.TPN scares me. Central access lines scare me. Worsening GI dysmotility scares me.

If feeding through the jejunum fails, central access and TPN is the next step. So, maybe you can understand my hesitancy of skipping straight to the GJ without even trying a g-tube. We need to at least let Nathan show us how he reacts to having a g-tube before we automatically deem it as a failure.

But let me back up a sec and tell you the other doctors view on this... I mentioned a while back that Nate's gastric emptying study in Houston was significantly delayed across the board while he was off his motility meds for a couple of days. We recently repeated that test while he was on his meds to compare the difference. Much to our surprise, the results were a tad worse than they were in Houston, and again showed significant GI dysmotility across the board. Obviously, his prokinetic (the third we have tried in 2 years) was not working.
So, we have reached a point where his stomach just can not make the adequate strength and frequency of contractions to move food through efficiently. Why do we still want to try a g-tube instead of GJ? Well, because the stomach moves liquid through differently than solids. We know Nate doesn't handle solid food too well, but we have no idea what his GI tract will do with elemental formula, as it is easier to move through and digest. His surgeon and I feel like we at least need to give him a run with a g-tube to see if it helps. Another perk is that I can replace a g-tube at home if this one should pop out or needs changing...a GJ has to be replaced in the OR or IR.

Should he not be able to tolerate the g-tube like we are hoping, it will be a fairly quick procedure for the surgeon to guide in a GJ tube in the same stoma created for the g-tube.
And to make this post even lengthier, after talking about the tube placement surgery, the surgeon surprised me with his next proposal. He said that his desire was to try Gastric Electrical Stimulation on Nathan...essentially by placing a gastric stimulator on Nathan's stomach to cause it to contract and hopefully help move food through like it should. Shands and Nationwide Childrens in Columbus, OH are the only two hospitals that have recently been performing this new form of treatment on pediatric patients with gastroparesis.

The problem that has had my head spinning all day with unanswerable questions, tough emotions, and doubt and hope at the same time is that we are not sure how this treatment will work on a child with mito. The surgeon mentioned that due to the nature of the disease, the pacer may not work. And if it does work, it probably won't last his entire life. But he believes that if it does indeed work, it could potentially help preserve his gut function for a longer time. He said that he believes that Nathan is a good candidate for the stimulator placement.

If we agree to the treatment, he will have the temporary stimulator leads placed through the stoma for his g-tube after it has healed while the actual device (looks like a pacemaker) is taped to the outside of his belly. The temporary stim will last around a month. This will be the time when we should be able to tell if it is working or not. If it does work, he will have a permanent stimulator placed inside his body with the leads on his stomach.
Now, one of the problems is that there is a risk of infection for any foreign object in the body, and infection and mito are enemies, as it saps the body of energy. But if it works, it could potentially be huge for Nate. But we don't know if it works with diseases of energy metabolism, where the disease originates in the cells. But how do we know it won't work unless we try it? But why does Nathan have to be a guinea pig?

You see where my frustration comes into play? These decisions are so very difficult to make, especially when even our leading doctors aren't quite equipped with the knowledge of how to lead us through this due to the fact that it is such a new treatment. But it is times like this that make me remember that God has lead us through so much over the past few years. He has guided our hearts and minds through this entire journey, and he will not forsake us through this difficult fork in the road. I pray that he will continue to guide us, for we need it so desperately.

I used to think that it was a hard decision to pick out which restaurant we should go to when Jay and I were dating. That is comical to think about when you put it against having to make numerous decisions that could positively or negatively influence the life of your child. My, how things have changed over the years.

Wordless Thursday: not as fun as Wordless Wednesday

My brother and I on the top picture...circa 1986-ish.
Nate and Emma on the bottom picture...2011.

Genetics are funny that way.

Wednesday, June 8, 2011

Crunch time

She could hardly wait until early afternoon for her makeover. Its something she has talked about for weeks and the day was finally here. Today was the day that the costume came out of the wardrobe bag for the first time. Today was the day that she was able to wear red lipstick for the very first time, accompanied by makeup she could wear out of the house. Today was dress rehearsal for the upcoming recital. It's been months in the making. Many monthly tuition checks written to the dance studio, weekly classes, and countless personal performances in front of the long bathroom mirror to make sure she had to just right. Today was the very last practice before the big event.
The rehearsal brought forth copious amounts of nervous giggles from the petite ballerinas, periodic tear swipes from the tuition payers sitting in the auditorium with video cameras in hand, and a huge sense of accomplishment for an entire year of learning and practicing. I definitely did not expect the afternoon to be quite so emotional. But alas, my sentimental heart gets the best of me sometimes.
I can't wait to see the final performance on Saturday!

Monday, June 6, 2011

Long day

I have to say that I LOVE having a camera on my phone. I have always enjoyed capturing as much of life as I can in pictures, but taking a big honkin' camera with you everywhere you go just isn't feasible all the time. Having a camera on my phone helps me to be able to capture the everyday stuff that I normally wouldn't...or helps when I forget my other camera or flat out don't want to lug it around, which seems to happen quite a bit these days.

Nate had a big day at the Shands Med Plaza today. We left at 6:45 this morning and pulled into the driveway at home at around 4:30 this afternoon. It was a long day. However, the little guy was an amazing trooper once again, never once complaining or whining about anything whatsoever.He had the 6 hour gastric emptying scan again today...a repeat test of the one he had when we were in Houston, except for the fact that he was on his motility meds this time around where he was off them for the test in Houston. We want to be able to compare the results to see how the meds are making a difference in his GI motility. Essentially, he had to lay completely still for 90 minutes while a camera took pictures of how food moved through his stomach and intestines...then come back for another short set of pictures at 4 and 6 hours post eating. We should get results within the next few days.After the gastric emptying test, we met with our GI again since his tube placement should be coming up soon (we meet with the surgeon Thursday). It was a straight-forward appt where we talked about how long the hospital stay will be (about a week) and what formula they want to put him on (they are going to contact Houston on this one). Seeing the docs and nurses in our clinic here is almost always a treat...I say that tongue in cheek, as I never thought I would utter such phrases. However, since we have been part of "the system" for over 3 years now, Nathan is pretty widely known around the med plaza. He sees multiple specialists, so he is there quite often. We've been there long enough that the nurses call out to him with waves and smiles as soon as they seen him in the full waiting room and everyone else pretty much knows us by name. He is definitely spoiled with stickers and toys and hugs each and every time we are there. It is always heart-warming to see your child being loved and doted on by others.

(His absolute favorite hiding place in the waiting room at the med plaza)

So the day went very well. Although, we did pick up some results from the labs he had run last week, and they were a bit off in different areas. If he weren't looking so good right now, I would be more concerned...but in all honesty, he is doing great (aside from not gaining weight in a few months). His white count was a tad low again and his IgG levels were lower than they have been in 2 years, so I am praying earnestly that he won't get sick before our vacation or his tube placement. At least it's not winter time with his levels being low like this. He also had another few immune levels that were off, and when talking to our immuno's nurse practitioner, she said that she had already planned to discuss his labs with his immunologist when she gets back from a conference tomorrow. This kid is always a mystery. I wish I was able to see more of what was truly going on inside his little body...what kind of war was being fought in there.

But today I am exceedingly thankful for a little guy who goes with the flow. Who doesn't mind being completely strapped down to a table with a large boxed camera inches away from him for an hour and a half. Who will let me know when something itches so I can scratch when he can't get his hand free during tests. Who cries in fear but willingly holds out an arm so that a needle can be inserted and blood gathered. Who tells strangers "hope you have a good day" after they finish whatever test they have to do on him. Who gives open-armed hugs to his favorite nurses and sly smiles when he asks for more than one sticker. Who never ever complains about the circumstances of his life, but tackles it all with a strong and courageous spirit, a sometimes nervous smile on his face, and an ipad in the crook of his arm. He is my Nafey boy, and God has blessed him with more strength for a little boy than I could have ever imagined.

Thursday, June 2, 2011

Is it really June?

With the end of the school year festivities piling up like crazy coupled with an upcoming ballet recital for the middle-un, our life looks like most every other comparable family during this hectic time of year. But add in the littlest little-un with his copious specialist appts that seem to last at least half a day that somehow got added on during the last two weeks of school plus another upcoming 6 hour gastric emptying scan along with a CT of his lungs and sinuses...well, all dat just adds fuel to the ever growing fire of insanity that we call our life right about now...And then, just to give misery some company, add in a total house makeover...complete with painting and decorations and brand spankin' new carpet throughout the entire house. Well, that just confirms our stupidity to schedule such foolishness during one of the busiest times of the year. It's purdy and all that, but we are so darn exhausted and ragged that having time to sit back and enjoy it all seems to be weeks away still.
I have to admit that I LOVE our new carpet. And I LOVE my husband for not fixing his pay stub to where we wouldn't get a good sum of change each spring from having too much withheld throughout the year. This is the best income tax carpet I have ever laid eyes on. When we moved into our house over 7 years ago, one of the only downfalls was the horribly damaged and stained carpet. We merely shrugged our shoulders and said that we would replace it once the kids stopped peeing on the floor. And so, that was our plan.
Along with the rule of "Thou shalt not wee-wee on the floor", we have implemented other widely known rules of "thou shalt not carry thy Capri-Sun past the table" and "thou shalt not trance through the house with sand, mud, nor debris on thy footies". I am now one of "those moms" who really would rather the kids take off their shoes at the threshold and tip-toe through the house, lest they knock any dandruff or dead skin cells onto our fresh flooring. I am also test driving a new set of shock collars for the chillens that they must wear any time they have food or drink in hand, so to keep them in the confines of the invisible fence that encloses around the kitchen. It's a great little discipline tool. You should hear them yelp each time they walk too close to the doorways. Fo' rizzle though, it is really nice to have new, squishy carpet that makes you want to bounce with each step. I am so thankful that we were able to improve the house in that way.
Nafey boy had an appt with our local immuno on Monday. In the paperwork I have to fill out each time I see her, one of the questions was "Is your child better, the same, or worst than their last appt with us?" Without much thought, I immediately circled "the same". I mean, he seems the same as last year...still going strong, smart as a whip, ornery at times, active for the most part...yep, seems the same as last year. But once I started talking to the nurse practitioner and doctor and started mentioning that since we saw them last a year ago, he has had problems with iron deficiency anemia, hyperammonia, increased GI dysmotility, and had an increase in his O2 requirement, they laughed at the fact that I had thought he was "the same". But in all honesty, he seems the same to me...he's still Nathan...the rest is semantics. I guess it is all a matter of how you look at everything. Anyway, our immuno brought up an excellent point in that all of our doctors here have always assumed that Nate's breathing issues were a result of respiratory muscle weakness, but no one has ever really looked at his lungs to rule them out completely. She is right on the money with that. In fact, I asked a couple of years ago if we could do more testing on his lungs to make sure that we weren't missing anything there, but it was strongly assumed that his retractions and tachypnea were a culmination of muscle weakness and metabolic stress...which is most likely still the case, as it makes the most sense. However, since our immuno wanted to take a closer look at his sinuses since he has had a few sinus infections along the way, she said that she wanted us to get a clearer picture of his lungs as well...hence the CT of his sinuses and lungs. The little guy also has appts with GI and our surgeon coming up next week where we will plan the tube placement. It will more than likely be the end of June of first of July, as they gave us permission to wait until we got back from Marco Island to go through with the surgery. Emma also has her ballet recital next Saturday, and she won an award for "Most Inspirational Student" in her dance class. I am so proud of my little gal. And Abby's last day of school is Tuesday. Man, this has been a crazy few weeks. (Pics from our trip to Augusta/Middle GA; Memorial Day Weekend 2011)

Blog Archive



Life with the Ferrells Copyright © 2008 Green Scrapbook Diary Designed by SimplyWP | Made free by Scrapbooking Software | Bloggerized by Ipiet Notez