Sunday, November 30, 2008

Thankfulness


I am a little late on the Thanksgiving post, but I figured that it was always a wonderful time for a post full of thankfulness.

What a year to be thankful! In fact, I have to be honest here...the real reason I have put off this post is because I am just overwhelmed with thankfulness and don't have the foggiest where to start in listing it all. When I think of how the Lord has blessed us this year, my heart starts racing, my mind starts skipping from one thing to another, and I just get lost in it all with a huge smile on my face. What a year to be thankful!

We are definitely thankful for the newest addition to the Ferrell family...Mr. Nathan Andrew, himself. Our life changed in so many ways when he was born. So many told me that a son will steal a mother's heart like nothing anyone can explain, but that is definitely something that you can not understand until you actually feel the love soaring from your chest. Our baby boy...he has added so much to our family this year. What a year to be thankful!
No one could have ever prepared us for hearing the dreaded presumed diagnosis of SMA for our son back in May either. I still can not think back on those heart-wrenching 6 weeks without my eyes filling to the brim with tears and my heart aching that same heavy ache it did until I heard the delightful words that Nathan's genetic testing came back negative for this horrible disease. Despite those tough days that were almost debilitating at times, I would not erase those few weeks from our life for anything. As difficult as it was to bear, it was an intense growing and loving experience in our family and with our walk with God. I will not trade our close relationship with our heavenly father through those times for anything...when thinking of that, I have tears of joy. For He saw us through a trial in our life that seemed so insurmountable...He led us along and embraced us close to his heart, and that was an amazing experience. What a year to be thankful!

It still amazes me how the Lord prepares the tiniest of details for changes in life. Before Nathan was born, I was greatly afraid for how Emma was going to handle the extra attention devoted to her little brother and not her. She was my clingy child who rarley left my side and who craved the daily rockings to sleep. Over time, the Lord prepared her heart to handle having to be brushed aside at times and pushed off to be cared by others...sometimes for days at a time. I would have never believed that she made this transition so well. Now, my little snugglebug loves the adventure of staying with others and so far has never gotten homesick. What a year to be thankful!I never realized that God can use a 4 year old to speak volumes to others in times of need. He did just that with Abby over the past 9 months. She has given us encouragement when we felt like we were at wit's end, laughter when our spirits were so low, and a smile and a twinkle in her eye when we felt like we were losing life's battles. She has been such a joy in our lives. What a year to be thankful.I never realized how much I treasured the love and prayers and friendships of our church family until this year. Yes, we have always truly enjoyed belonging with a wonderful group of people, but things have changed along the way. This year, we have felt their saddness, happiness, joys, frustrations, and prayers as we have embarked on the difficult journeys we have endured. We have felt the intense love in their hugs and words of encouragement. We have missed them terribly from one Sunday to the next and enjoyed every moment of togetherness during the times we have spent with them. They are special to us...and we love each and every one of them in a way we absolutely can not describe. What a year to be thankful!Then there are the less obvious things to be thankful for...the things that often get brushed aside as not much of anything...

Jay's job is a wonderful stability in these troubling economic times. It has been a blessing that he has been able to take off so much time from work this year to either keep our girls or go with me to different doctor appts.

We would have never thought that we would be so thankful for insurance...and good insurance at that. To date, our insurance has paid quite a bit over $100,000 in Nathan's short life. We have not run into many snags to date with them yet, and we are so thankful that they have been so accomodating with all of the tests, procedures, and therapies along the way.

We are thankful to live a few short miles away from a wonderful Children's hospital with many wonderful pediatric specialists. There are families who drive from hundreds of miles away to come to our pediatric clinics, and we have a short 10 mile drive through town. And we are thankful to have wonderful doctors who have put us in touch with other world-renowned doctors to help try and figure out what is wrong with our son medically.

So yes, a majority of these thanksgivings center around Nathan, but he has been through so much in his 9 months of life. The Lord has provided for him and us greatly through this time and he continues to provide...what a year to be thankful!

Wednesday, November 26, 2008

Lots and Lots and LOTS of snapshots from KY


Quote of the month: "Emma, he is crying because he doesn't want you to ride him like a horsey!"
So, I'm making up for not being able to post pictures for the entire time I was in Kentucky. Here are just a few from our week visit. Hailey is the most precious little redhead ever. She's so dainty and has the sweetest little smile on the smallest lips I have ever seen (and they are quite kissable).
Here is "Uncle John", my sister's fiance'. He is such a good man and will be a wonderful husband to Ashley and father to Hailey. They are getting married sometime next fall (correct me if I'm wrong, Ash).

Emma couldn't remember his name for the life of her. After asking her numerous times what his name was, she finally looked at him and said, "I just want to call you 'Him'." Typical Emma. The stinker.
Nathan was in love with Ashley and flirted with her constantly. The kid knows pretty women when he sees them...though he did flirt with John as well. Hmmmm, I think I'll keep that one from him as he gets older. My other sister's boyfriend, Ben, came to visit for the weekend, and we all had so much fun just hanging out and enjoying eachother's company. I've been trying to hook these two up since they were like 2. I distinctly remember being at a church meeting in Atlanta and saying to Bethany (who was about 10 at the time), "Okay, that kid over there climbing the tree...he's Ben Mozingo and he is your age. Come on. Just go and talk to him. No, he will not think you are stupid. Just do it. Trust me."

No, she did NOT go and talk to him that day, but 6 years later...Yes, I am the idiotic mother who let her children go out in the snow in their pajamas. But to my defense, they were footey pajamas...and I made them wear their hats and finger coats. I was just scared that all the snow would melt away in the 20 minutes it would take to dress them in the best snow gear we could muster. Nevermind the fact that it was like 25 degrees outside. I mean, the youngest two have never seen snow before, and I was going to let them enjoy it, by golly....frostbitten and all.
They kept making snowballs and putting them in the freezer so they could eat them later. Too funny, those kids. Abby has already decided that she wants to make a snowman when we come back at Christmas. So hear that, Kentuckians...here is our order for some more snow at Christmastime. (More pics of the snow from the last night we were there on Tara's blog.)
Hailey is doing well and gaining weight. Her metabolic doctor ran some more blood tests to check for other fatty acid oxidation disorders at last week's appt...they should be back in a month. She does not think that Hailey has MCAD, but she is definitely a carrier for it. And since some of her levels are still a little off, they are checking other metabolic labs. She also goes back to see the cardiologist in a month to check everything.

One thing is for sure...the girl sure does look like a Gowens. I couldn't get over how much she looks like her Pawpaw (my dad) here:
In other news, we knew that this stomach virus was a big test for Nathan, and we were so glad he did so well during it. However, his little body has had a really tough time getting back on track. The poor guy is in so much discomfort and has been horrible reflux and at least one huge projectile vomit each day. Conversations with his GI doc have proved that his gut motility has slowed down exponentially. Currently, we are trying to give him little feeds (about 2 ounces) to keep him hydrated and hoping that his body kicks in and starts moving the food out of his belly at a better pace again. Right now, it just sits there and hurts him. If he hasn't improved by next Monday, we are going to have to start increasing some of his motility meds to help out some.

I just hate seeing him like this. He cries when he eats, and he is just so fussy all of the time...so unlike him. His smiles have been few and far between the past few days, and I just wish I had my little Nateman back. Poor little guy.

Tuesday, November 25, 2008

9 months


My dear Nathan,

Apologies for posting this a day late, son. Your mama was throwing her toe nails up on your 9 monthday. Better late than never though, right?9 months...this is such a fun age. It's the age where we can really start to see you learn new skills at a pretty fast rate. Just a few days ago, you started babbling in the cutest little baby boy voice ever. You have even repeated the word "Bye Bye" to us a few times...though you absolutely WILL NOT perform in front of others. It's kind of a "I'll do it when I feel like it" sort of thing.
You also started clapping a few days ago, and it is the cutest little uncoordinated clap I have ever seen. I love it. We have played many rounds of "Pat-a-cake" lately because of your new found skill. Another big thing you will do every once in a while is let go of whatever you are holding onto and stand by yourself for a second or two. You will be walking before we know it...I'm predicting that it will be around your first birthday.
You are still the smiliest little thing ever, and I just love that about you. You love your mama and daddy, but you also love to be around people you sometimes barely know. You smile at strangers and get everyone's attention where ever we go. I know I say this every month, but it still amazes me how friendly you are and continue to be...even through the quintessential separation anxiety stage. You are just such a sweet and loving little guy.Stat wise, you are 17 pounds 9 ounces and 27-3/4 inches long...pre-virus. You have 4 teeth on top and 2 on bottom, and you have recently learned that when you grind them against eachother, your mama screams in psychological pain. Listening to teeth grinding is like hearing fingernails on a chalk board...or hearing someone puke. Not good sounds, no.
You are such a boy that it's funny! We are starting to have to teach you what "Be gentle" means as we take your hand and slowly stroke our faces with it. As soon as we stop, you resume your boyish smacking against our cheeks and ripping our glasses off our faces. We're working on it. If you weren't so darn cute when you did it... You also like to scratch everything with your fingers in a curious way to try and figure out the texture. I love seeing you explore everything these days.
So 9 months Nafey boy. I can not believe that you are this old already, and before we know it, we will be celebrating your year birthday. Oh, do you bring so much light into our family! Happy 9 months, my son.

Monday, November 24, 2008

The sick house


Abby: Mama, we shouldn't call this the "Ferrell house" anymore. We need to start calling it the "Sick house".

In all of my 8-1/2 years of marriage to my dear hubby, I have never seen him throw up. Granted, I was NOT on the deep sea fishing trip he took last year when he realized that he was indeed not a good candidate to take to sea...on a rocky boat...in choppy waters. Not a good combo for him.

So last night, my poor pitiful spouse got this brutal virus. And it was very brutal to him. After a dose of phenergan (thank you leftover pregnancy stash), he was finally resting comfortably. Well, about as comfortably as you can be when your stomach is performing cannibalistic acts on its own lining.

So you know what this means? I'M NEXT! I'm skeered. I'm very very skeered.

Crap.

And since my poor pitiful pukey hubby would probably not like me to snap a picture of him all layed up in this sick house, here's a pic of the feverish one relaying a message for the day: Peace Out Sickies!

Sunday, November 23, 2008

The plague is upon us


It ain't too purdy around this hood, so I would HIGHLY recommend keeping clear. Nathan started blowing out of both ends yesterday (isn't that a nice picture?), and I have to say that he really scared us last night. He just wouldn't stop throwing up and had very little muscle control. I would have to hold him upright just so he could throw up because he had such little muscle strength. We were definitely contemplating taking him in to the ER, but as soon as he finished throwing up all the bile in his belly, he perked up almost immediately. All in all, the poor kiddo threw up 15 times in 3 hours. We were so relieved and thankful that he did relatively well with such a violent virus.

I woke up about every 45 minutes to give him some Pedialyte for a majority of the night to make sure he would remain stable metabolically, and he is doing great today. He is tired and weak, but he is almost back to himself. It is so hard right now since we don't know what is going on with him metabolically. Harsh sicknesses like this have the ability to make him turn for the worst really fast, but he seemed to do okay despite the fact that he was so sick. And it is so wonderful to see him look so much better today.

On the other hand, Jay and the girls were about 100 yards from the church parking lot this morning when Emma threw up for the first time. He stripped her down to her skivvies and turned the van towards home again. She's gotten sick a couple more times, but she is keeping some Pedialyte down pretty well right now.

After Abby not having a fever for the past couple of days, it has returned to the 100 degree range. Em and Nate haven't had a fever through this virus, so I think Abby has something completely different.

We've all just sat around in our jammies and watched movies...in fact, the girls were introduced to the crazy world of The Wizard of Oz this afternoon, and they were quite impressed. Those flying monkeys still give me the creeps, but whatevah. Here's hoping there will be no nightmares tonight...for me.

Through all of this (and in the week of thankfulness), I am TRULY thankful that the kids waited to get this sick until we got home. I could not imagine having to make the long trip home from Kentucky with puking younguns. It's so great to be home...where today's high temp was 68 degrees. Sah-weet!

Thursday, November 20, 2008

Heading South


Tara and Jolee are here now...the van is packed up, and we are ready to head south first thing in the morning.

However, it is snowing like CRAZY outside right now. So far the roads are not covered, but the ground has a good amount on it. We had a fun snowball fight a little bit ago, and we have tracked in so much snow and muck that mom has had to mop the floor twice. My little Florida girls walked outside barefoot to see it snowing and quickly found someone's back to ride on so they wouldn't have to walk on the cold fluffy stuff. I'm thinking of bringing their rain boots to walk in the snow when we come at Christmastime.

Abby has a fever tonight. That's the only symptom...once the motrin brought the fever down, she was running around like usual. I have asked her about 2 dozen times if her stomach hurts, and she says no. Here's hoping that it is just a little cold.

So we are heading home tomorrow...that is, if the roads are okay in the morning. These two Florida girls don't really remember how to drive on snow. We've had a great week, and I will post some pics next week.

Wednesday, November 19, 2008

Wintertime is for the birds


It is mind-numbingly cold here, and the girls still aren't quite so sure how to deal with coats and shoes all of the time. We seem to be missing our 75 degree days the longer we are in the arctic. The girls did get to play in the snow a few times over the weekend, but snow on canvas sneakers and thin knit pants don't mix too well. And then a sleet pellet poked Emma in the eye one day while she was in Cincinnati. Obviously, they weren't as impressed in the snow as I thought they'd be...though there are still 4 snowballs in the freezer so they won't melt.

GREAT NEWS: Hailey's cardiologist appt was today, and she was 6lbs 4oz. She has gained 8 ounces since Friday!!!! That's awesome for that itty-bitty thang. The cardiologist was very pleased and upped her intake to 2.5 ounces every 3 hours. She will still just take a little over a teaspoon by mouth before getting completely exhausted, but she is tolerating the tube feedings so much better.

BAD NEWS: Tara and Jolee have a naaaaaaaaasty stomach virus. She is visiting family in Owensboro, and everyone has been sick. I feel horrible for her. Sadly, my list of "I owe yous" for her will now take a lifetime to pay back.

So this puts us coming home later than we expected. We don't know when it will be safe to venture on the trip back to warm weather, but we are hoping to be home by the year's end. :) We both miss our husbands terribly and are so ready to get home.

And on that same front, it seems that about 63% of the people we know up here have this stomach virus. Bethany and I are crossing all of our fingers, toes and legs that none of us come down with it...and we say that as our stomachs rumble due to the mere mention of a virus sweeping the land. Kind of like how your head itches everytime someone mentions lice. It's not a comforting feeling.

Keep Tara and Jolee in your prayers...the poor pitiful thangs! I owe them BIG TIME!

Saturday, November 15, 2008

Now I remember why I like Florida so much


Emma wanted to go outside earlier and wanted to know where her finger coats were. It took me a few minutes before I realized that she was talking about her mittens. It is freeeeezing here, and the girls are looking forward to hopefully seeing a few snow flurries in the morning like they are predicting.

Hailey is home and doing well. She is starting to tolerate her feeds better and not spitting up nearly as much as she was yesterday. Hailey pulled out her feeding tube tonight, but Ashley put it back in perfectly. She is such a good mama! I was able to feed her part of her bolus feeding tonight since I needed some practice on everything...I am keeping her Monday and Tuesday while Ashley is at work, and I can not wait snuggle with her all day on those days. My sister-in-law from Cincy is keeping the girls from tomorrow night until Tuesday night, so I can devote my attention to Hailey and Nate...and the girls are totally excited to see their other cousins for a couple of days.

The plan right now with Hailey is to focus on getting her to gain weight, and they will decide the plan with her heart once her weight is stable. There is still some question on the MCAD diagnosis also...remember, that's the fatty acid oxidation disorder that inhibits mitochondrial metabolism. Her cardiologist says that they believe she does indeed have MCAD, but her metabolic doctor has not made that official call yet and wanted to run more tests. Currently, they are all treating her with medication to help if she does have MCAD.

What we do know is that she is the most precious little thing with gorgeous bright red hair...but hey, I'm partial to that. She's a little fighter and has completely stolen my heart and the hearts of everyone around her. I have loved every minute of being able to see her on this trip.

The kids are doing great! They have loved the extra attention over the past few days, and they have all been pretty good. And I miss my darling husband and can't wait to see him in a few days....thanks for folding that mountain of laundry hun. :)

Abby: Mom, Emma keeps poking Nathan in his eyes.
Me: Em, why are you poking Nathan in his eyes?
Emma: Because it's funny.

Friday, November 14, 2008

Baby, It's cold outside


We made it to KY safely yesterday, and I must brag on all the chillens for momento...they were soooooo good! Nathan fussed for maybe 15 minutes the entire trip. Emma was a bit whiny, and the girls' DVD player broke, and we ran over a squirrel...other than that, it was a very fun trip. Thankfully, Tara brougt her DVD player too, so we rigged a make-shift DVD stand made of pillows, blankets and the diaper bag in the middle of the van so that all of the girls could watch a movie from time to time. Dude, what did we do before DVD players and cell phones? Huh? Anyone care to remind me?

I finally got to hold my baby niece for the first time last night, and I am in love. She is precious and gave me the sweetest wide-mouthed squinty-eyed smile ever. She is so darling! But oh my, is she tiny!

She gets so tired eating from a bottle, so she will only take a few mls of formula by mouth, so they are trying to feed her 2 oz a feeding through her ng tube (feeding tube through her nose). Currently, she is spitting up a good portion of it because her little stomach can not hold all of the 2 oz, but they must stretch it out to do so.

Her cardiologist said that her heart will be at its worst when she is 3 months old (in a month), and there is a possibility that they will have to do surgery to repair it at that time. The only problem is that they really want her to be 10 pounds to be able to do this surgery...she is currently 5lbs 12oz.

I am about to head off to visit her again, and I'm coming with camera in tow. But unfortunately, my laptop's charger pooped out on me the other day, so no pictures until I get home. Just take my word on it that she is the most dainty, precious little thing...and she looks just like her mama.

Wednesday, November 12, 2008

Baby Hailey


My neice, Hailey, was admitted to Kentucky Children's hospital this morning for congestive heart failure and failure to thrive. She is still under 6 pounds at 2 months old. They are monitoring her formula intake today and will more than likely insert a feeding tube tomorrow. Please keep her in your prayers. We have no idea how long she will be hospitalized.
The kids and I will be driving up to Kentucky tomorrow with Tara and Jolee...it is truly amazing what a best friend will do for you in time of need. Thanks so much, T. I look forward to the road trip! I have been burdened to go up to KY to meet Hailey and visit with everyone for the past couple of months, but things have been so hectic around here lately. Thankfully, after the two appts we had this week, we have no more Dr. appts until December. What a perfect time to travel.

Let me stress that this is not a freak-out post. Yes, Hailey is very sick and desperately needs to gain weight, but she is okay. We are merely going up there because A. I want to snuggle my nose into that itty-bitty neck of her's, B. I want to help Ashley out if she should need me to bring Snickers and Mt. Dews and give her some company during those looooong, boring hours, C. We want to try out our new coats for the season, D. We haven't been to KY in almost a year, E. I can't think of anything better to do than listen to Nathan cry for 12 hours straight in a closed in van, and F. Did I mention that I want to snuggle my nose into that itty-bitty neck of Hailey's. And like I said, this is just a great time to go up there and be of emotional and physical support.

We'll be gone for about a week, Lord willing. I'll try to update when I can.

Tuesday, November 11, 2008

The sneaky one


Me: Why in the world are you stealing money from our change jar?
Emma: Cause my piggy's hungry and I need to feed him.I think I may re-steal some of that moolah and buy the kid a belt...I've been seeing way too much crackage around here lately. And yes, I did correct her cardinal sin of "W" sitting after this shot, thankyouverymuch.

Friday, November 7, 2008

An attempt to save money on the grocery bill...


Did you teach this to them this week, Tara?

Thursday, November 6, 2008

Daily Life Resumes


Today has been a good day of REST! I had no idea how exhausted I was until we got home. My sister-in-law and I were talking about how amazing it is that God will give you the strength to get through what you need to do during these situations for the exact amount of time you need it. I truly had no idea that I was so worn out until last night and was finally able to rest...both mentally and physically.
Nathan has been doing wonderful today. His fever broke, and I haven't had to give him any pain meds since mid-morning. He started out the day barely crawling around, but he is almost back to new with crawling and pulling up to stand right now. He's still weak and tires easily, but he is doing great overall!
These are some pictures from the last few days...the top one was of my little dude during the RMR test. They were checking his oxygen/CO2 levels to see how many calories he needs each day. I wish I would have thought to take off his sweater beforehand because he got beet-red in that bubble and was NOT happy after a few minutes. And then he had another EKG done to check his heart rhythm.
Here's my little guy after surgery, all swollen and sleepy. He made friends with all the nurses and they took turns holding him while he flirted and laid his head on their shoulders. He is such a sweet, personable little thang. As the OR nurse was taking him back for surgery, he just kept smiling and laughing at me. It made it so much easier to send him back happy...his smiling face was something that remained in my memory throughout the time we were apart.
Let me backtrack a little...Brother Coy Thomas from Bethany PB Church in Atlanta just so happens to work at Scottish Rite, and he found us as we were doing pre-op on Tuesday. It was great to talk with him and see a familiar face. On Wednesday morning, he was there with us along with Brother Gus Harter, which was a huge surprise. We were able to visit with them for a good 2 hours before Nate's surgery, and it was so wonderful to catch up on so much. I have missed Brother Harter so much over the past 8 years and was absolutely delighted to be able to hear about his family and stories from the past few years. I am so thankful that these two men came to sit with us...it made the wait time enjoyable and kept our nervousness to a nil. It was exactly what we needed without us even knowing it.
The girls had a complete blast while we were away. They stayed with their best friend, Jolee and the rest of the Ford's for a couple of days, and then stayed the remainer of the time with Wandy. Thank you all so much for keeping them! It was truly a vacation for them, and they still haven't stopped talking about it. There are some pics of the girls and Jolee on Tara's blog.

Thank you again for your prayers during this week. The week went smoothly, and we are so glad that it is over. The Lord continues to bless.

Wednesday, November 5, 2008

Home


A quick post before I hit the hay...we are home, and Nathan is doing well. He has been in some pain throughout the afternoon/evening, but the surgeon prescribed some tylenol with codeine for him that is helping quite a bit. The surgery went well. They took a 2cm cube of muscle from his left thigh, a sliver of skin from that same area, and some blood, urine and spinal fluid for other labs. Thankfully, all of this was done after he had been "put under".

Nathan managed to pull out his own IV as he was coming out of anesthesia...that's my crazy boy. He was groggy and sleepy, but did very well afterwards. He had a few issues with high heart rate, but that is just the norm for him, and he is running a low fever this evening, but it is coming down with medication. All in all, he has done wonderfully.

Scottish Rite is a wonderful hospital, and I was highly impressed with everything! Every single appt all week was exactly on time, and we were kept informed through every little step. This definitely made the week a lot less stressful than we had set it up in our minds. I am so thankful for this. And I can not say enough good things about Scottish Rite...you Atlantans are blessed with a wonderful hospital and staff there.

I'll update more tomorrow with some pictures. Right now, I am off to give one last kiss to my sleeping girls and boy and slide into my own bed. It's good to be home. The Lord has been merciful to us.

Tuesday, November 4, 2008

Today's events


I want to thank you all so much for your thoughts and prayers for us today and tomorrow. The Lord has heard them and has blessed us exponentially already. Nathan was so great today. He slept for about an hour at Dr. Shoffner's office and has just been happy and friendly all day. And today's events were not nearly as stressful or strenuous as we thought they would be. It has been a wonderful day.

Nathan had a resting metabolic rate test and another EKG done this morning. The EKG looked good other than his heart rate being a little higher than normal (no surprise there), and they will give Dr. Shoffner the results from the RMR tomorrow.

We met with Dr. Shoffner after that and just really enjoyed this visit. He had spent quite a bit time looking over Nathan's records, and this was evident in his knowledge about Nate. It was very interesting to get his view on everything. Dr. Shoffner was mostly concerned with the fact that Nathan goes through these weak cycles where he is lower-toned and weaker than usual and that he has hepatic dysfunction (liver dysfunction). Nathan's abnormal AST, LDH, and AFP levels along with the fact that he had prolonged jaundice for the first 2 months of his life are evidence that he has had hepatic dysfunction since birth. This and his "cycles" are the most concerning symptoms at this time in Dr. Shoffner's eyes. Everything else (GI issues, Immuno issues, etc) are all just milder symptoms of whatever else is going on with Nathan.

Dr. Shoffner also confirmed that Nathan does indeed have autonomic dysfunction. The autonomic nervous system controls things your body does involuntarily...heart rate, digestion, temperature regulation, and respiratory rate. I have recently thought that his issues with tachypnea, tachycardia and temperature problems were related to dysautonomia, and Dr. Shoffner confirmed that suspicion today. This autonomic dysfunction does seem to be just another symptom of whatever else is going on with him.

Tomorrow, we are to be at the hospital at 7:45am. There is a slight possibility that we would have to be there earlier so Nathan can have another echo done if they can't find the one he had done when he was 2 weeks old. With his chronic tachypnea, they HAVE to make sure that his heart is strong enough for the surgery, and I am glad they are taking these precautions.

During surgery, they will take blood for testing, muscle and skin from his thigh, and spinal fluid for testing of neurotransmitters and other labs. He will be under general anesthesia, and the surgery will take about an hour. Dr. Shoffner's lab will automatically take the samples and start testing for numerous disorders and diseases affecting metabolism. He said that we should see some results in 6-8 weeks, though it could take as long as 12 weeks...that is definitely a lot sooner than we were originally told.

We are thankful for today. It has been a great day of information. Everyone has been professional and kind, and I am just a wee bit jealous of the incredible set-up they have at Scottish Rite CHOA. I just hope that the plans for our city to have a free-standing Children's hospital in the future do not fall through. Meeting with Dr. Shoffner was such a wonderful privilege, and it was great to hear him say that while Nathan is not severely affected currently, we definitely need to find out what is wrong with him for appropriate treatment, precautions, and genetic involvement for our children as they grow older.

Again, thank you for your prayers. I believe they have been heard and answered.

Monday, November 3, 2008

Atlanta


Nathan and I sat on the couch in our hotel room tonight decompressing from the day of travel. He was going to town on his paci; I was trying to go over in my mind the things I wanted to make sure to talk about at tomorrow's appt with Dr. Shoffner. It has been a long few months, and Nate's medical history is so long and expansive that I know I am going to forget certain questions. I rubbed Nathan's pudgy little thigh and my heart sunk thinking about the scar that is going to be on that thigh from now on.

I have written on here before about it being hard to know which tests to run in this search for a diagnosis for our son. Him having a muscle biopsy done is a very invasive test, and it has been very difficult at times to know what to do regarding this test...

Our neurologist brought up the muscle biopsy quite a few months ago, but quickly dismissed us needing to do it at this time. At a later appt, he said brought it up again but also said that he didn't think we needed a muscle biopsy, so we brushed it aside as a distant thought. Before last month's appt with him, we didn't know what we should do regarding more testing for Nathan. He was having a great few days before the appt, and when he looks good, our worries are low. I prayed so hard before that neurology appt that if we needed to search more for whatever is wrong with Nathan, that the Lord would open a door for us.

My neice Hailey had been born just a couple weeks prior to this appt and we had updated our neurologist on her abnormal metabolic newborn screening test, so he decided to look at all of Nathan's abnormal bloodwork and abnormal organic and amino acid levels...I think this was the first time he had looked at everything together. He came in the room with these abnormal levels written on a scrap sheet of paper and brought up that it was time to have a muscle biopsy if we were willing.

The Lord opened a door for us.
Nathan has had a rough month in regards to weakness, sickness and GI issues, but he has had a great week this past week. He has had a REALLY great week. He looks so strong and healthy right now. I have doubted this move to see Dr. Shoffner and have a biopsy done all week. Was this the right thing to do? We are putting our son through surgery, and he is looking so good right now. What are we doing? Sure, he has other quirky things constantly going on, but look at him! He looks so good. Why are we doing this?

When the pediatric surgery center called last Friday saying that their anesthesiologist would not do the surgery anywhere except a Children's hospital, I thought it was a way out. "Would a hospital do it on the same day?" I asked, and was told that they didn't know...I would have to be in contact with Dr. Shoffner's office. I prayed so hard that if it wasn't the Lord's will that Nate have this biopsy, that he close this door for us. The door looked halfway shut already...maybe we were too hasty to begin with. Nathan looks so strong right now.

10 minutes later, I get an email from Dr. Shoffner's office manager saying that we were moved to CHOA at Scottish Rite...at an even earlier time than previously scheduled.

The Lord opened a door for us.

We are in Atlanta and a bit nervous about tomorrow. Nathan has a metabolic test from 9:00-10:00, we see Dr. Shoffner from 11:00-1:00, and Scottish Rite called today and said that we have to come there for pre-op for Nathan from 1:30-2:30. I ask for your prayers for tomorrow...that Nathan can endure the long day; that the doctor will be given wisdom and understanding regarding Nate's case; that we can have clear heads and energy throughout the day. I hope to update tomorrow night.

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