Wednesday, April 29, 2009

The good, the bad, and the ugly


The good...Nathan saw the audiologist for a hearing test yesterday and passed with flying colors. In fact, they tested levels that they don't always test in kids Nathan's age, and he still responded accurately. The audiologist cheerfully announced that his hearing could not be more perfect right now! Oh, what a wonderful thing to hear! We don't have see her again for another year for his yearly hearing test.The bad...Nate's physical therapist came over yesterday and said that something has caused Nate to decrease in muscle strength in his core (chest/back area, etc). He was doing so well for quite a while and then we all of a sudden started seeing issues with his breathing again, problems with him choking more frequently, changes in the way he was walking, and him sitting in the "C" position again (curved back). This weakness just seemed to snowball into a whole mix of problems. The strange thing is that there was not any thing that seemed to trigger any of this...he hasn't been sick all month, so I don't know quite why he has gotten a bit weaker lately. Thankfully, it is not drastic at this point, and we have a whole slew of new stretches and exercises to do with him to help regain his core strength back.The ugly...after emails and phone calls with Nathan's pulmonologist about his increase in respiratory symptoms lately and his problem with wheezing nearly every time he is active, the pulmonologist fit us in for an appt today...and diagnosed Nathan with asthma. He will be on an oral steroid for 5 days to get a jump start on the inflammation and then have to take Flovent twice a day to help keep the inflammation down. He will also have albuterol as a rescue drug for break-through wheezing.Nathan also has a sleep study set up for May 27th. He has always been a fitful sleeper, and the Pulm. wants to make sure he is not suffering from hypoventilation at night or central apnea...both relatively common in mito patients. Nathan gets more tachypneic as the day wears on, and we really need to make sure he has the muscle strength at night to breathe effectively. Oh, I pray that this sleep study is normal, as I am just not ready for the potential respiratory support that can come with this disease...though I don't think anyone would ever be ready for their kid to have to have support.Our pulmonologist also brought up a very, very difficult conversation about the future with this disease in regards to respiratory progression...a conversation that we knew we would eventually need to have but have been ignoring the topic entirely. He said that we need to talk about these things when Nathan is relatively healthy...but really, living in the land of denial is so much easier at this point. Nathan looks great right now, and it is extremely difficult to think of a day where he may not look this good health-wise. It makes my heart and stomach hurt.Alas, this pulmonologist has been there with us from the very beginning of this journey...he was the first specialist we saw in the hospital when Nate was 2 weeks old. He's been through a lot with us, and he seems to care about Nathan...we are officially on a first name basis, as he insists that I just call him by his first name (mainly because his last name is so stinkin' hard to pronounce). So even though it took me by surprise when he brought up the conversation about the "future" and gave me a depth of sadness that is so hard to explain, I do appreciate him bringing up these difficult things we have to think about in regards to our son. But good grief...the reality of everything is so hard to swallow sometimes...especially when he looks so "normal" right now, for the most part. Some days are so incredibly tough. This is one of those days where I just wish I could rewind and never have to live through.Nate must have known that I was quite "down in the dumps" this afternoon because he decided to lift my spirits quite a bit. Little dude decided that during his "naked time" (he needed some "airing-out", okay?), he would eat his own poo. Yep...even with 3 kids under wing, there is a FIRST for everything! Not only did he eat his own poo, but he had the biggest grin ever when his sisters and I were screaming at him. Obviously, he has no taste buds whatsoever (or else, lunch was good the second time around...okay, just scratch that thought...NASTY!). Despite the tough talks we have to have about our precious little boy, he is still just a boy...who is often up to NO GOOD whatsoever!

12 comments:

mandie on April 29, 2009 at 11:32 PM said...

my 19 month old has just been diagnosed with mito. we do not know what type. we just got the call yesterday that his labs indicated liver disease. we have to wait for his ammonia levels to come back.
i know what you mean about wanting to rewind.
this is a really hard road to walk.
you and your family are in my prayers.

Rodney Chandler on April 30, 2009 at 8:43 AM said...

We love you.
Praying for today's strength plus a a little extra for you today. And Will pray for tomorrow's strength for you tomorrow!

Tara on April 30, 2009 at 10:37 AM said...

Nate, that is NASTY! Jolee is sitting here in my lap and when I told her what he did, she said...you don't eat poo-poo, that goes in the potty!!! Sorry you have had a rough couple of days. If there is anything I can do, Im here. Love ya and always praying for you and the family!

Amanda on April 30, 2009 at 11:00 AM said...

Amber, I wish I could say something to make all your heartache go away but I know I can't. Just know that I think of you every day and pray that the Lord will give you strength for your days. God knows that as mother's we all need his grace and strength but the things you have to face calls for much more than average. I love you and hope to see you in May!

Jill on April 30, 2009 at 1:09 PM said...

My dear friend,
Pryaing for peace and strength for you guys.
Love, Jill

erin f. on April 30, 2009 at 2:33 PM said...

I check up on your blog often and always say a prayer for Nathan. I will continue to pray for him and for you're family. He is truly one of the most precious adorable little boys I've ever seen - I LOVE all your pictures!

mandie on April 30, 2009 at 3:59 PM said...

just wanted to let you know that i am praying for you and nathan. the Lord has put you guys on my heart. i pray for peace even in the midst of mito and all that it entails.

Anonymous said...

We love you!! Our thoughts and prayers are always with you!!!

Beth

Anonymous said...

Nateman is such a cutie!!!! You are always in my thoughts and prayers. No mother likes to see her child sick and any mother hurts when she hears of a child sick. So I (in a small) way) feel your pain.

Krischa Pilcher

michelle Garvin said...

I'm so sorry you had a 'reality in your face day'..I try to avoid these entirely too. All in God's hands and perfect plan. Glad Nate could cheer you up with a little poo snack though...I just don't know what I'd do with a little boy!?!? Big hugs and as always you are in my prayers.

Sara said...

Amber & Jay,
I love reading your blog daily and the pictures are just adorable. I am so sorry that you all are having to go such difficult times, but most of all I am so thankful that you have such a wonderful faith in God. We keep you in our prayers and ask the Lord to grant a cure for this horrible disease.
Love to you all,
Sara Stroud

Dana on May 1, 2009 at 8:19 AM said...

Thank you for sharing your journey with us Amber. I know it is hard, but you are such an encouragement to me and I know to others. I love how you always seem to end on a good note. Wow how we could all learn from your dependancy on God and the strength that you draw from Him. I will pray extra hard today for you guys. I love you so much and truly think the world of you. By the way, those pictures of Abby are GORGEOUS! She looks like you more and more. Where is that pause button?
Love you,Dana

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