Friday, October 31, 2008

Halloween 2008

Here are some pics from this morning...we are about to head out to a doctor appt, Boo at the Zoo, and then end the day with some neighborhood trick-or-treating. I am a STRESS BALL! Emma and Nathan were awake for eons last night, so Miss Emmalion was banned to her bed until she took a nap this morning. It took her all of 3 seconds to fall's hoping that it puts Miss Whineybutt into a better mood.
In typical Nathan fashion, the kid can NOT do anything by the book, so I should have expected some mishap during the planning of this muscle biopsy next week. They have started doing these biopsies at the Pediatric Surgery Center in ATL, and we had a surgery time for 10:00 on Wednesday. But after the anesthesiologist found out that Nate was baseline tachypneic, he said he wouldn't do the surgery there. In a mad dash to change venues to a hospital and times and being prayerful that we could still do everything on the same day, I finally got an email from the scheduler saying that his surgery has been moved to Children's Healthcare of Atlanta at 9:45 on Wednesday. I am now in a mad dash to complete his pre-registration before we leave for his GI appt in a few mins. I'll update more when I'm less of a stress ball.

Update: Okay, I'm less of a stress ball now...probably because I am too pooped to stress. We just got back from our Boo at the Zoo where the kids had a BLAST. I really enjoying taking them each year. Emma is on nap #2 right now...all that Halloween excitement obviously got to her.

Nathan's GI appt went well...he has now been diagnosed with gastroparesis (delayed gastric emptying). Our GI said that he wants Nate to have a gastric emptying scan done to see how delayed his emptying is, but we can wait on this scan since he has so much going on right now. He said that it is clearly evident that he does indeed have this from his symptoms (spitting up food 2-3 hours after eating it, horrible pain and congestion at night, not eating much at each sitting) and the upper GI scan he had Wednesday, so he started Nathan on erythromycin to help speed up his motility. If this works, it should help with his reflux and pain at night. Our GI also said that we need to give him solids sparingly until we get his motility under control since it is clear that his stomach isn't digesting solid food like it is supposed to.

All in all, he is still happy with his growth...17lbs 9oz and 27 inches long. And I really hope that the e-mycin works and we can all get more sleep from now on.

Okay, now off to make a healthy dinner of non-cavity forming foods before sugah-fest begins.

Wednesday, October 29, 2008

That 4 year old wit...hardy har har

Abby: "Mom, what does this say?"
Me: "I don't know. I can't look behind me when I am driving."
Abby: "But I thought that you had eyes behind your head."
Me: "Yeah, but they only open when you are doing something you aren't supposed to be doing."
Nathan had his upper GI scan done today, and it went almost exactly like we expected. It didn't hurt him at all, but he was so ticked off about having the be held down and lie still, and I just hate seeing him so upset. He did not aspirate...woohoo!! I knew he wasn't aspirating, but it was more of a precautionary test that we needed to do to make sure.They needed to see him swallow, see it go into his stomach, and then see it go into his small intestine before the test was over. So we saw the barium go down into his stomach, and it sat there...and sat there...and sat there. There were a couple of looks between the radiologist and the nurse in the middle of them trying to coax the barium into Nate's intestine with "Come on. Just make that curve. Come on." We fed him more barium that sat in his stomach...and sat...and sat. Mind you, this is all amidst the poor child declaring to the world that he did not like to be held down. We finally fed him the last of the barium bottle and I sang to him until he calmed down. He sat there for a few more minutes and then the barium finally made the first move into Nate's small intestine. It was slow going, but it did make it.
There has previously been some talk about Nathan having Delayed Gastric Emptying (DGE), so this kind of confirms that to a degree. The radiologist did say that he would have to have a gastric emptying scan to tell how delayed it is, and to talk to our GI about it. Nate has an appt with GI on Friday. I really don't want to have the gastric emptying test done unless it is absolutely neccessary because Nate hates these types of tests so bad, so I'll see what the GI has to say about it.Nathan had more bloodwork done today to check his AFP levels again, and while we were at the hospital, I picked up his labwork from this month for our records. I found out that when he had the last round of labwork done, he was having mild neutropenia again (low absolute neutrophils). This was about 4-5 days before he had one of his monthly "weak cycles", so this is even more evidence that he is going through cyclic neutropenia during these cycles. I am going to wait to see if he continues to get bacterial infections during these weak cycles before we start with the testing of this though, since it involves blood tests every week for 6 weeks. The poor little man gets stuck way too much already. It's just not cool that the ladies who work in both labs we frequent know the little guy by name.
And to make this medical post even longer, I also picked up the immune workup he had done 3 weeks ago. Only one little part was back in time for our appt with Immunology earlier this month, so it was interesting to see the remainder of the workup. Turns out that Nathan has no antigens (antibodies) to tetanus and candida. He has had two immunizations for tetanus (DTaP), so he should definitely have antibodies for that. I emailed our NP for immuno to see what we needed to do because of these results. We will more than likely just have to have additional immunizations to tetanus until he is able to retain some titers. He has had some issues with unexplained diarrhea and a nasty yeasty diaper rash, so those may be from the candida. Who knows? It definitely makes you question it all. Nathan also had some other immuno labs come back abnormal (shocking!), but I can't figure out what they mean and am waiting for a return email from the NP to see if they are of importance or not.

So that about sums up our day. Except for the fact that poop after consuming barium is NASTY! Just so you know for the future. And that people who live here truly don't know what to do when it gets down to the 30's in October...we're all like reptiles. We move slowly when it's cold and complain a lot. So get used to it.

Tuesday, October 28, 2008

It's freeeeeeeezing!

Spoken like a true Floridian now...with teeth chattering and all. Nathan is taking a nap in an oversized hooded sweatshirt on top of all of his clothes. The girls are bundled up in their coats while watching Maggie and the Ferocious Beast. And idiotic me has the windows opened because it finally feels and smells like fall...and it will only last for one day and by golly, we are going to ENJOY IT! Teeth chattering and all.So yeah, our blood thinned. Our high today is going to be 61, and that is about as cold as it gets down here for a high temp...maybe a few degrees colder in the heart of what we call winter (ie: for a week and a half in January). We are going to the park this afternoon with some friends (so we can all enjoy these unseasonable artic temps), and I can guarantee that all of our kids will be decked out in hats, scarfs, parkas, mittens and flip-flops. And I know all you northerners are totally making fun right now, but we have lived here for almost 5 years now...and I'm not ashamed to say that IT'S FREEZING DOWN HERE! Make fun all you want. At this rate, we'll have to retire, I dunno, the Bahamas. Fine by me.Since we are going to be gone next Tuesday, we took full advantage of our state's wonderful early voting system last Friday. For 2 weeks before the elections, you can go to a handful of election sites around here and cast your ballot at your convenience. It truly is a great set-up. And since 3/4s of our city was off work last Friday because of homecoming, there were a TON of voters. I love voting. I love the feeling of satisfaction that I did my part after I place that "I voted" sticker on my chest. I love showing my children this privilege and importance we have in voting...and watching them proudly show their "I voted" stickers as well. It was a fun day! Here's hoping and praying that our vote made a difference in putting McCain/Palin in office.

Friday, October 24, 2008

8 months

My dearest Nathan,

I just fed you the last bottle of the evening, kissed your squishy cheek and laid you back down in your crib as you slept. I enjoy these times...the times when I can sit and feed you. When you are enjoying your bottle, you take your hands and put them in my mouth. Or you run your fingers through my hair and then hold on to a handful of strands for a while. Sometimes when I look down at you, you give me a smile that causes you to stop eating for a brief few seconds. I see your eyes narrow and point up at the ends, and there is always a special glint inside your eyes. I love to see you smile. It warms my heart like you can't imagine every time I see it.
I have enjoyed this month with you, my darling boy. You're personality is really coming alive right now, and I love seeing the little man you are becoming. You love your mama, that's for sure. And I have to tell you that I am secretly so glad that you are currently a full-blown mama's boy. You will always reach out for others to pick you up and hold you, but as soon as you see me near, you reach your arms to be near to me. I love that. I just can't help but snuggle your head under my chin when you are in my arms. I can't quite explain to you how my heart feels in those moments, but there is such a sense of contentment that overwhelms me each time I hold you.After being on another reflux med for over a week due to you waking up screaming and in clear pain every hour or so each night, you slept from 11:30-6:30 for the first time in months last night. You have only slept through the night twice in your little life, so you sleeping for 7 hours last night delighted me to no end this morning. I truly hope that the additional medications will help you out and cause you to sleep like that more often.
You have really started playing with your sisters this month, and you love them both to pieces. Your favorite is Abby right now because she thinks the world of you and spends almost every bit of your waking moments playing with you. She truly loves you so much and tries everything in her power to make you laugh, smile, and pay attention to her. Because of this, you often crawl up to her and lay your head in her lap as she watches TV...either as a sign of affection or you wanting more attention.
Your relationship with Emma is still budding, as she has just recently seemed to be aware that you are indeed alive. HA! She plays with you and asks you questions, and you always respond by pulling her hair or laying on her...both of which she hates. But within the past month, I have seen a spark in your relationship with Emma. She now pays extra attention to you and talks to you like you are her best friend in the entire world...and you often respond to her with a smile, which makes her more happy that I can convey. She loves you Nate...I hope you always know that.
I still love comparing what you are doing to what the girls did. You definitely LOVE to bang whatever toy you have on the ground, against the wall, or against either of your sister's heads. You love balls. I have gathered all of our balls and put them in one basket for you, and you will routinely empty that basket and then crawl after all of the escape balls. You also love enjoy spinning them and just watching them go round and round. I am truly amazed at the way your brain thinks regarding toys versus the girls. It's definitely cheap entertainment.
You are still not a big eater these days, but you do seem to like table food a lot more than bottles. It is sometimes a struggle to get you to eat 4 ounces at a feeding most days, but you will scarf down a cracker in no time flat. You also love pinto beans, green beans, and little strips of chicken. You still eat a good amount of your banana oatmeal each morning, and you always love to sit and eat what everyone else is eating at dinner. I see the days of baby food jars quickly leaving us, as you would rather eat what we are eating...I don't blame you. I do love our family of 5 being able to sit at the dinner table together. I hope we continue that family time as long as we are able.
My little Nathan, this month has been a great one. I enjoy seeing the everyday blessings that God has given you...and given us. This next month is busy with more tests, more Dr. visits, more pain...but also more love, more laughter, and more happiness. I am constantly amazed at your bright attitude and happy spirit through all that you have had to endure in your short life. God has blessed you, my son. And God continues to bless. That, I can assure you.

I love you, my precious boy.

Wednesday, October 22, 2008

Carnies and Biopsy info: quite the unusual pair

First, the carnies. Does anyone else just laugh every time they say that? Cracks my junk up. Now get is also our neurologist's name. HA! I love it. Flows off the tongue so well. Okay, we decided to continue our yearly cultural experience for the kids by visiting our county fair last Saturday at a time when we "thought" everyone was fever-free. By my guess right about now, there are probably some sick carnies manning the kiddie-car due to my inability to realize that the wee middle one was running about 3 degrees too hot. Apologies all around.
So, the girls LOVED going to the fair this year. We left last year saying "Well, at least Emma will be tall enough to ride the rides next year." Little did we know that we had such a slow grower on our hands and the wee one was about an inch and a half too short again this year. But...mix in a few non-english speaking workers and they don't usually try to explain to you that your child wearing the $15 ride bracelet is too short to ride their seriously dangerous contraption. She was only really denied once. Aren't we the good parents? But she's almost 3, for crying out loud. When is this kid going to grow?The kids really enjoyed seeing their mix of quintessential fair animals...the only time they get to see such furry creatures all year. Emma wasn't amused. A cow mooed at her, so she gave it the ugly eye. Abby is my more adventurous kid who will indeed touch the animals, but then requested to wash her hands the moment she stepped out of the shed. Oh, my poor sheltered kiddos.And where else can you get the opportunity to milk a tub of milk with rubber nipples (another word that makes me giggle...I could totally go back to middle school, I know.). Now the girls will have the know-how to get a job milkin' if ever we truly have another depression. Score one for teachable moments.Other skills you can help your children master while at the fair: counting...numbers of tattoos one person can have on a given body part. Cognitive recognition...perferably the "what's making that smell" game. Visual many mullets can you see? Memory...Girls, how would Dora interpret what that carney just said?I'm telling ya, it's a total field trip. We're all smarter for going. And fatter...come on, everyone's gotta love fair food.I received another call from Dr. Shoffner's office today...Nathan's consult and muscle biopsy are scheduled for November 4th and 5th in Atlanta. On the 4th, he will have a Resting Metabolic Rate test performed early that morning to see how many calories his body needs to live day to day (basically, how many calories your body needs while resting). And then we have our consult with Dr. S scheduled from 11:00-1:00. The muscle biopsy will be at Scottish Rite Hospital on Wednesday, the 5th.

All of Nathan's records were sent to Dr. S and after reviewing them, he said that he wants a radiologist that he trusts to have an additional viewing of the MRI Nathan had done in August. It was ruled as "normal" by the radiologist down here, so Dr. S wanting a second opinion makes a mama's eyebrows raise. It could be nothing, but it isn't usual protocol, so I am anxious to see if they find anything different.

For the most part, we are so thankful to get a different set of eyes on all of Nathan's records. Dr. Shoffner has ALL of Nathan's records and is reviewing all of them. And we found out that his EKG results were NOT in his chart which means that no doctor ever reviewed them. Nice. Thankfully, I have a copy that we are faxing to Dr. S's office tomorrow. And as much as we love the doctors down here, I believe that this is probably the first time that someone has sat down with everything and looked at the big picture instead of whatever their "specialty" takes care of. With Nate's problems being so systemic, this has created quite the problem in seeing the big picture with him.

I am nervous and anxious about our consult in 2 weeks. I need to use a day soon to gather all of the info and questions we have for the appt and put all of my thoughts and concerns on paper. Please keep Nathan in your prayers for those couple of days...and please pray that God would give the doctors seeing eyes and healing hands and knowledge that we may have to help our son through the future.

Tuesday, October 21, 2008

What day is it?

The kids are better and I am doing well on a steady diet of sudafed and motrin, thanks for asking. Its funny how kids can just bounce in and out of the sickies pretty fast and it takes forstinkingever for us add-dults to overcome the same thing. Makes me feel a sort of need to take more vitamins, drink more water, and eat a daily regiment of prunes and bran cereal sort of way...that kind of old. Forgive's the sudafed brain fog talking.

Nathan had PT this morning, and it was clearly evident that he has regressed some for the first time in quite a few months. He is back to the hump-back sitting, not able to fully straighten up where the band of weakness that circles his chest and back when he sits, he slouches really badly. We worked for 2 months on strengthening that part of his back and he has regressed back. It's frustrating, but we hope that he will bounce back quickly and regain what we have worked on so diligently.

We were aware that it could happen with kids who have metabolic issues, so disheartening as it has been, it came as no surprise...the recent sicknesses have seemed to put on strain on his body causing him to regress some. His muscle tone was pretty bad for the duration of the sicknesses/shots and it caused us to lose a little ground. But, it can be regained...and hopefully quickly!

On a great note, we have been able to lessen his PT appts to once every 3 weeks. We have realized that Nathan has the skills he needs to move around, and all we are working on right now is strength and endurance and stretching out his legs muscles that are constantly too tight...these are things that I can work on at home daily, so there is no need to go to PT every week. His muscle tone issues can not be changed, but his strength can be helped so we will probably constantly have to work on this. As much as I LOVE taking him to PT, this will help us get at least some normalcy to the weekly routine again. We may even start going to the library every Tuesday like we used to! Our therapist wants me to order some "hip helpers" (look like little bike shorts) for him to wear when he is moving around on the floor to help his hip abduction. So, all in all, we are moving forward!

Nathan's swallow study test is next Wednesday, and when I was talking to his GI doc on the phone last week, he mentioned that he probably wanted Nate to have a Gastric Emptying Scan done sometime after the swallow study. Obviously, reflux in low toned kids is taken pretty seriously. A few of his docs think that Nate may have delayed gastric emptying (DGE or gastroparesis) that is causing his reflux to worsen, and there are some meds out there that can help with that. Sometimes it is hard to know which tests truly need to be run and which are just precautionary stuff. Hopefully things will quiet down a little more soon.

Monday, October 20, 2008

In generation x-ers terms: This sucks!

Whatever happened to moms having super immunities? To being able to wipe the snottiest of noses and give doses of tylenol and motrin at all hours of the night to miserable high-fevered kids without worrying about being contaminated with whatever nasty bug was flying around? Isn't that how it is supposed to work?

I had that "sore throat whole body achy" thing going on before I hit the sack night. And by "hit the sack", I mean that I played musical beds between the couch, the bed and Nathan's floor because he was burning up and miserable all night and would only sleep for about 20 minutes at a time before whimpering out in the saddest little "I'm miserable" voice ever.

I woke up with swollen lymphnodes and more body aches...and a nose that I'm contemplating on just cutting off and trading it in for a better model. In a desperate measure this afternoon, I asked Abby to please please please watch her brother for about 10 minutes so I could just close my eyes. She did well...and turns out that Nateman loves himself some Dora and didn't move for those 10 minutes. Score!Oh, my littlest bro turned 18 yesterday! Happy Birthday Jared!!! And like always, I wanted to prolong your birthday a little longer, so your card will be there a few days late. Hope you had a great birthday.

Sunday, October 19, 2008

Nice try

Emma and Nate both have pretty high fevers today, so I stayed home with the two littlest littleuns while Jay and Abby (whose fever broke yesterday morning) ran off to church. After it was decided this morning that Nathan had indeed caught whatever the girls had, Abby (who has been trying to desperately figure out a way to keep from getting the flu shot next month) sighed a big sigh and proclaimed "Seeeeee! I knew that the flu shot wasn't going to work this year!"

No, they do not have the flu.

And yes, she is still getting the flu shot next month. The little smarty pants.

Friday, October 17, 2008

A few random facts

Emma somehow managed to get Elmer's glue in her hair yesterday. I somehow managed to comb through it all this was not a tearless approach.

Abby is one sick little 3 of fever and one nasty sounding cough. But she is the sweetest little cuddle bug when she is sick.

I give Nate a little "air out" time first thing each morning after laying in a soaking wet diaper all night. During this morning's "airing out", I was holding him in my lap while I checked my email. He peed in a perfect arch onto the keyboard. My fingers may smell a little ammonia-esque for a while, but I'm just glad that keys still work.

Emma is going through a horrible spell of disobedience.

I went to bed last night at 9:00. Woke up twice to feed Nateman and woke for the day at 6:45. Can I say how much I needed that?

Emma goes through a half box of bandaids every day. I let her. I find no problem with wearing 6 bandaids on your body covering imaginary boo-boos.

In the past two days, I have fished out carpet fuzz, hair rubberbands, money, and a dead wasp out of Nathan's pie hole. No wonder the kid has reflux.

Emma walks up to Nathan and uses her knees to push against him just enough so that he falls over. She's my trouble kid right now. We're working on her.

We took a walk to the park last night and Nate rode in the wagon for the first time. *sniff* My kids are growing up on me.

Wednesday, October 15, 2008

She's the artsy one of the fam

So I was just kidding when I said that we had no doc appts for the rest of the week. Little did I know that our ped's office would get us in so quick for flu shots and a recap of everything going on with Nate's specialists. Abby's been stressing about the flu shot ever since she heard me talking to the receptionist on the phone yesterday, so she decided to figure out how to induce a 102 degree fever during her unusual nap today, getting her a pass on the flu shot until next month. (Amanda! I am totally hoping that this fever is just a fluke. She has no other symptoms, so I am crossing my fingers, but it's not looking good for this weekend. Dude, are we ever going to get together?)Anywho, I took crayons with me so the girls could entertain themselves by coloring on the paper thingy that covers the exam table while we waited for the doc. Abby wrote her name...first and last name with wonderful penmanship, if I may add...which totally made me beam with pride that our pediatrician would see it and realize how smart she truly is. Come on, don't pretend that you don't think the same things sometimes. I'm only being honest here.
And then I peeked over to inspect the gorgeous portrait of a stick figure that Emma was finishing. It had crazy hair, three eyes (that she later told me were two eyes and a nose), a smile that stretches past it's football-shaped face, 2 arms growing out of it's ears, and 3 legs sprouting from it's chin.
After praising my artistic child for her incredible work, she gave me a run through on each body part...where I was informed that her brilliant drawing did not include 3 legs, but was rather an anatomically correct portrait of her little brother. Hummmm, wonder how much therapy that will cost her when she gets older.
Their peciatrician got a laugh from it. I also a sort of "dude, these kids are totally going to make me completely grey by the time I'm 30" kind of way.Nathan received an additional reflux scrip for zantac to take with the prevacid as an attempt to get him to stop spitting up/coughing/hiccuping/gagging quite so much and hopefully to SLEEP at night. This kid absolutely positively won't sleep more than 2-3 hours at a time at night, and it is exhasuting. I was just spoiled with the girls being such good sleepers. I talked to the ped about him not sleeping who suggested that we should ferberize him when we are able to completely rule out fatty acid oxidation disorders...if he has an FOD, we will have to give him night feedings until he is 2. But since we don't know what is going on metabolically with him right now, we can't really let him go all night without eating. Every night, I dream of getting a hotel room and sleeping for 10 hours straight...heck, I'll even take 8 hours. It's been 8 months since I've slept 8 straight hours. Okay, enough whining from me. I'm blaming it on the lack of sleep. :)

Oh, and I thought it was very fitting that the appt was primarily to talk about Nate's reflux and he just so happened to hurl all over his check-out sheet...twice.
Oh yeah...we got the appt date for our genetics appt here. Ready for this? May 19, 2009. All I could do was laugh at that. Turns out that if you truly do have something genetic, it isn't going away anytime soon, so what's the use in seeing you sooner? If we hadn't been warned about the long wait to see them before now, I'd be a freakin'! But this makes me even more glad that we are going to ATL for the biopsy...Dr. Shoffner is a geneticist. And we should have the results from the biopsy by the time we see genetics down here which would tell them if we still need to try to figure out this mystery or just talk about the genetics of it how the girls could be affected, how our future grandchildren could be affected, how it is passed down, etc.

Tuesday, October 14, 2008

Another great appt!

I can not fully explain to you how good it feels to have Dr. appts with good news attached to them. We go into each and every appt now with a feeling of dread regarding what they are going to say or some new thing they are going to bring up, so we are always so pleasantly surprised when the news is mostly good.
Nate saw Immunology today, and they were super nice. I LOVED her nurse practitioner. The great news is that Nathan's IgG levels are not low enough to need IVIG at this time. WOOHOO!!! That is such a huge weight lifted off our shoulders for the time being. They are going to give him 6 months to see if he can start making more IgG on his own before we even explore that possibility again. The other great news is that while his IgG is a little on the low side, he has indeed made titers to his pneumoccocal vaccine...the Dr. described it as his "quality of immune cells being better than his quantity" and that is fine right now.For the time being, he is to receive no live vaccines until we do some more immune function testing in March. Unfortunately for the girls, they are going to have to have the flu shot instead of the flu mist this year because the flu mist is a live virus and the girls would be contagious...they said that it is too much of a risk of Nathan actually getting the flu from them if they got the mist. Crazy, eh? But we don't have to see immunology for 6 months unless we see some other immune function things pop not responding to oral antibiotics, etc.
Little dude has an ear infection and is now on abx for the next 10 days. We've noticed that he has been acting really strange lately, but he just came out of a weak spell from last week...hmmmm, makes me wonder if he is indeed going through cyclic neutropenia during those weak periods and his low neutrophils caused his ear to be infected. Interesting. (Don't mind me, just talking to myself here. I do it often.) We're also wondering if his seemingly worsening reflux is what has caused his ear infection since he hasn't had a runny nose or cold in a good month.
Which brings me to the next point of business...we are more than likely going to be doing a barium swallow study with Nathan to see if he is aspirating any since he is still refluxing so much. All of his doctors are completely stumped as to why his body temperature seems to be all over the place and why he gets daily low grade fevers, so they want to rule out aspiration. The NP also said that she was interested to see if there was an issue with his gut motility since he sometimes spits up whole pieces of undigested food up to 2 hours after eating. That's something we'll talk to his GI doc about at our appt in a couple of weeks.

So, there's your medical mystery update for the week. No more appts this week...ahhhhhhhhhhhhhhhhhhhhhhhh (that's a happy sigh, for those who can not actually see my happy sighing smile).

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