Wednesday, January 6, 2010

NO strictures!

Jonah had his Upper GI Study (Barium Swallow and X-rays) today. I felt like I didn't want him to have to go through all of that and then come home and have to go through dressing change. So Matt and I got up at 6:00 am (after Matt had been fighting to get Jonah back to sleep since 5:15), took our showers and got completely ready except for changing our clothes. We got Jonah out of bed at 7:00, put him in the bathtub and finished dressing change around 8:30. We were at the hospital by 9:00. They took us back to the x-ray room pretty quickly.

Nurse: "Take all his clothes off down to his diaper and socks."

Me (in my head, of course): Socks? SOCKS? This child is bandaged from head to toe. These are NOT socks.

Matt looks at me, all "what the heck" like. I just roll my eyes and start undressing Jonah.

Me, looking at the flat hard board contraption with STRAPS under the x-ray machine (out loud this time): "Um, we can't put him in that."

Nurse: "I'm just getting it ready. The doctor can decide that. I'm just doing what they told me to do. That's what I get paid to do. Follow directions."

Me (in my head): Well, I'm about to tell you what to do, and it's my money you're getting paid with, so you're about to be following some new directions.

Doctor enters: "So what's going on with the little guy?"

Me (in my head... okay from now on if it's in italics, it was in my head): What the crap? Has nobody read his chart?


Me: "Well, he has this skin condition called Epidermolysis..."

Doctor nods his head. He's read the chart after all.

Me: "Oh, well Dr. S wants to make sure he doesn't have any throat strictures."

Doctor: "Will he take the barium by bottle?"

Me: Yeah, sure. Maybe when pigs fly.

Me: "I don't know. He usually only takes a bottle when we're at home, I'm holding and rocking him, and he's half asleep."

Doctor: "Yes, I read in his chart that he has to be asleep to eat and that Dr. P wants to put in a g-tube. He needs a g-tube."


Me: Um.... WHAT? Like you mean you plan to put one in right now so he can get this barium? What are we even talking about?

Me: "No, we decided that he DOESN'T need a g-tube. Dr. P wants to wait now that he's gaining weight."

Doctor: "Oh, that note wasn't in there. So he DOESN'T need a g-tube?"

Me: Ay, caramba.


Doctor: "Should we put an N-G tube down?"

Me: How the heck should I know what we should do?


Doctor: "I mean, it would only go down once and it would be well lubricated. Do you think we should try the bottle first? I've tried paging Dr. S several times, but he's not answering. Should we really put him through all of this just to make sure there's nothing going on?"

Me: Um... communication breakdown much?

Me: "I don't know. I want Dr. S to be making these decisions. I don't know why we're doing this except it's what he recommended."

Doctor leaves and finally gets in touch with Dr. S.

Doctor: "He says to try the bottle first and then do an N-G tube if that doesn't work."

Me: "Okay."


So Matt and I put on the radiation vests, but instead of being able to hold and feed Jonah and THEN do x-rays, they strap him down on the table (using lots of padding and with our supervision) and THEN expect him to take the bottle.

Me: About that when pigs fly thing... yeah, they're going to have to fly, turn purple, and sing show tunes before he takes this bottle.

Jonah: (Flailing head back and forth) Waaaaaaaaaaaaaaaaaaaaaaaaaaaaa!

Me: What's that Jonah? You are exhausted, starving, and strapped down to a table with a huge, scary machine over your head? Here, have some chalk.

Jonah vehemently refuses bottle.

Nurse: "Could we try a syringe?"

Me: That's the first intelligent thing you've said all morning.


Me: Yes, please. Let's try that. (thinking she would bring me a 5 ml syringe or something)

Nurse brings in a 30 or 40 ml syringe, fully extended.

So now I am trying to hold the strap off his forehead with one hand to prevent blisters and somehow get the barium into his mouth maneuvering a very long syringe with only one hand. Matt can't help because the x-ray machine is in the way, and there's just not enough room at the top of Jonah's head for both of us.

Me: Lots of choice curse words.

Doctor: Okay, we're done.

Me: Oh, thank you, Sweet Jesus.

Doctor: That's it we're done. And I didn't see any strictures. Everything looks good.

Me: Seriously, thank you, Sweet Jesus.

I yank Jonah up while Matt takes off his vest. Jonah's face is covered in barium, but other than that, there's not a mark on him. (Well, you know, except for all the ones that were already there, of course.)

After all that, we found a dark waiting room and fed Jonah. He ate an entire bottle without struggle and immediately fell asleep. Poor thing. We then waited for about 45 minutes for our 10:45 appointment with Dr. S. I LOVE Dr. S, and it was a good appointment.

We didn't get home until 12:30, so it was a very long morning. I fed Jonah again around 1:00, he had a big ol' gusher, I fed him a little more, and he took a two hour nap IN HIS BED. I was able to take about a one hour nap of my own. Maybe those pigs can fly...


We put him to bed early tonight because he was just exhausted, but he had another HUGE gusher (about six ounces), so we had to clean basically his whole floor with carpet cleaner and start all over again. Sigh.

But now he's in bed, and I'm soon to follow.

Kathryn said, "How do you feel after your nap?"

Strangely enough, STILL exhausted. Go figure.

** Disclaimer: I don't think the nurse or doctor did anything "wrong" in this situation. And those were just my thoughts at the time. They did a fine job and only wanted to do what's best for Jonah. I get that. I was just completely stressed out and wished they had already known about Jonah and figured all this stuff out before hand. I'm not hating on anybody, so please save the dirty comments and emails and the "You're not a very good Christian" comments for another day. Thank you. **

78 comments:

lifelaughsandlove said...

Awesome news! I've been checking all evening long hoping for an update. I was praying for you all last night and this morning for the appointment. So glad to hear that you got good news, and that it wasn't a complete disaster. I laughed out loud at your "have some chalk" comment. Your entire recap was hilarious. Hoping you get some good sleep tonight!

~Amy

Jennifer Finney said...

Great news!! By the way, you handled the nurse a lot better than I would have!

beach2lady said...

Bless your sweet heart Patrice ! I hate it when people are all business and don't demonstrate caring and compassion, especially medical professionals. I believe that a little human kindness goes a long way and maybe they chose the wrong career. So glad about test results and sending prayers for rest and good days ahead for all of you.
Hugs!
Linda

iluvmysweetgirlz said...

I am so glad there are no strictures!!! Yay! I must say, you have a serious talent for writing! I felt as though I were there and your comments in your head had me laughing out loud. =) Glad Jonah did as well as a baby could do through that and that it is all behind you now!

Sewconsult said...

Hugs all around!
Beckie in Brentwood, TN

Me, the boys and a Farm... said...

So AWESOME! I hate that you guys had kinda an ordeal...loved the recap! You're hilarious! So glad they didn't find anything, hate you all had to go through it but at least you now know! I think you are an awesome example of a wonderful Christian mother. Just because your Christian doesn't mean your perfect, nor does it mean you never let a curse word or anything ill humored fly...I don't get why people think thats what being a Christian means. Anyway, hope you guys get some much needed rest. Also, I didn't think anything you said about the Dr./Nurse was bad...sounds like they should have been a little more on their game, especially when it is so needed in Jonahs situation....just sayin'
Love from our family to yours.

karie said...

I think you are hilarious. read your blog all the time - this is my first comment, sorry to admit. Glad to hear it was good news today, keep it up Jonah!

Island Jack's Travel said...

Praise the Lord! I'm so glad this went better than expected and even gladder that you had GOOD NEWS! Don't feel bad about your thoughts. I had it out with a doctor one time because he told me I was "just the mother" and that I couldn't possibly know if my child was really having a reaction to a drug. AAAARRRGGGHHHH! I didn't keep my choice words to myself ... and then I went to a 2nd doctor who paid attention to "just the mother's" observations and opimion. Johanna WAS having a reaction to the medication Dr. #1 gave her. We changed medications (AND Doctor) and she quickly recovered. Don't EVER feel bad about standing up for Jonah! You did great!

Molly said...

Oy vey. I feel like when a doctor has a patient with a special need of ANY kind they should come prepared. Communication breakdown!!! You and Matt are awesome advocates for Jonut and I am thrilled to hear he has no strictures. YAY JONAH!

brightleigh said...

Happy for you all! This is really some good book material Patrice...I mean, I know it is not funny while you are going through it and there is probably something wrong with me and Rob sitting here whooping over your struggles with the doctors, but I declare you would give a stand up comedian a run for the money! Glad things turned out well and hope tomorrow is a little calmer. Love you!

Drama Queens said...

Oh Honey--I AM a nurse and still have those thoughts about other nurses and docs sometimes! :) It's all good--and YAY for good news!

Laura A said...

Wow, Patrice- you nailed that whole thing perfectly! I'm glad it turned out so well (even though it was somewhat of an adventure getting through it!) Poor Jonah - no wonder he's so exhausted!!

Praise God for no strictures - will pray for good rest for all three of you, and no more gushers (he was probably just so off-kilter after the swallow study - I'm sure at least the first one was just the barium coming back to visit. UGH!)

Love from TX!
Laura

Krystal said...

Actually, I wish I could come up with some of the good lines you blogged! I'm glad the barium swallow is over, and I'm delighted that Jonah doesn't have any strictures. Keep up the excellent mothering, Patrice. You're doing a great job, and you certainly have the best idea what Jonah needs overall. You've listened to your boy, and you're an excellent advocate for him. Good job!

Mommy Attorney said...

So glad for the good news, and you handled this extremely well.

mooneyequalsmc2 said...

I am glad for the good news!

I can only imagine your stress in such a situation.

God is good!

Kelsey said...

You are so funny, I love the end of your disclaimer. I am glad everything looked good!

Darcy said...

Praise the Lord! I am so sorry about the whole situation. I cannot imagine how frustrating it must be for you not having Dr.'s who understand Jonahs EB. (((hugs)))

Penny said...

Well, if God want those piggies to fly they soar!!!!!! So glad to hear that Jonah is stricture free!!!

Just another example of why it is SO important for more people to know and understand EB!!!!!

Rachael said...

That is great news for Jonah! Despite how frustrating it sounds. I have experienced that "didn't anyone read the freaking chart" feeling, and it is not great. Also, this:

"Me: What's that Jonah? You are exhausted, starving, and strapped down to a table with a huge, scary machine over your head? Here, have some chalk."

Totally cracked me up!

Meg said...

Totally cracking up, you are hilarious. I can completely relate to the frustration with medical staff. Our son had to do a barium swallow too and I thought it to be completely horrifying (for him and me both)! That machine is wacko.

Great job being his advocate, you are an amazing mother! Jonah is a very blessed little boy to have you.


Praying for you each night. God bless you.

Katherine @ Grass Stains said...

Yea for Jonah! I was so relieved to hear the good news, and so happy that you were able to get a little nap! Love you all to pieces.

chinamoon1420 said...

Love your disclaimer! So glad Jonah is ok!

mamatree said...

Hi Patrice,
We had to do the same test for my son, Josiah. He was born with a cleft lip and palate and the doctors wanted to give him a G-tube. They were a little G-tube happy! It was that test that proved to them what we had known all along - that he was not microaspirating! So, I just had a great time reading your post. Josiah was two months old and strapped to that chair and he was not taking a bottle! It was a miracle! I am celebrating with you!

Karen said...

I am SOOO happy that everything is okay. Even though I don't know you guys I feel like I do and I totally was praying that everything would be okay!!

Also-do people really write to you that you aren't a good christian? What kind of christian are they to judge another and their behavior?? hmmmm...makes you wonder!

Love your whole family!

Wanda Wilkinson said...

Praise God for answering prayers again....GREAT News!!! I had been checking your blog off & on hoping & praying that no disaster happened with the barium & x-ray...One more miracle for Jonah. Gabe is definitely sitting on Jesus' lap being an advocate for his baby brother.

You need to be writing a book. Your recap is hilarious!! You take something bad & make people smile.

Hoping for a more restful day & rest of the week.

Love to Jonah & you & Matt.

Wanda

Wanda Wilkinson said...

Me again, I forgot to say--I am the practice manager at a medical office & I better not every find out one of my nursing staff made the comment "i am just following directions, that is what I get paid for" to a patient or family member. If so he/she will not get paid any more!!!!!

dragonflyz in June said...

That's awesome, Praise God!! You are hilarious Patrice, you had me laughing!

You know, you are an amazing christian, you held your tongue when most people, christians included, would have said some choice words. You are awesome, remember that!!!

Peace and Blessings
Crystal

Erykah said...

We did a barium swallow and when they kept forcing the bottle or NG tube I kept asking myself, why didn't they just do a syringe?? Sigh, a baby with eating issues and first thought is a bottle?! Sigh. We also had to do the strap down to get a good "flow" since squiggling too much affects the study, those strap downs are just awful. I'm glad it turned out ok!

Cathy said...

All I know is if anyone is making hateful comments they aren't living the life with a medically fragile child! I needed a smile and your writing gave me that this morning! Thank you. I read about Jonah after he was born then changed computers, lost my favorites and now I have found you again.Will be back to follow.

megan said...

I was just about to leave one of those comments until I read your disclaimer. Just Kidding! Yay for great news!!

Patty said...

I think you handled the nurse like any mother should have. You are doing a great job and you are the greatest mom in the world. Keep up the good work.

Brittany said...

Oh patrice, i so sorry you had to watch jonah go through that. poor baby!

But, I am SO glad there are no strictures. Praise the Lord!

Michelle said...

Awesome news! I have a daughter with no health issues (Thank God) and I have those same "WTH Can you at least pretend to have read her chart?" type thoughts when she has her check-ups. Gotta love the system.

Kristen said...

So glad to read about the good news. I know it was a tough day, and you don't have to feel bad about feeling any of what you felt. I've had far worse thoughts in much less stressful situations! :) Always Praying,
Kristen

Lauren said...

So great to hear! And so sorry that you had to go through frustrating times with the doctors. As I was reading the play by play, I could just imagine your and Matt's facial expressions during this entire exchange with the the nurse and Dr. But that's awesome that Jonah took a whole bottle afterwards, too! Miss you and can't wait to you see you in a few weeks...

Lindsey Sowers said...

So glad to hear you got good news today AND you got a nap! However, if you are anything like me you probably felt worse after you woke up than before you laid down...when you are that sleep deprived 1 hour just doesn't cut it. Erica and I have been talking about the serious need for a girls night...soon! Think about it and I will call or e-mail soon to discuss.

Lacy said...

Patrice-
You are hilarious! I'm sitting at my desk cracking up and people are looking at me like I'm crazy. I LOVED your commentary! I know it wasn't funny at the time and I'm so glad Jonah is ok from all of it. Hugs and prayers! :o)

Kellye said...

Patrice, your comments always make me smile!! And NEVER APOLOGIZE for being an advocate for your child...if someone interprets that as "not being a good Christian" then that is their problem. I have to act in similar ways for my child (autism), especially when they say "he has to learn how to do __________" and I say "no, he's not going to learn it instinctively like other kids; your job is to TEACH HIM how to do __________!!!" But I digress as I vent, LOL. Anyway, the most important news is that there are NO STRICTURES!!!!! Yay, God!! And yay, Patrice, for being such a great mom who advocates for her son, no matter what!!

Erin said...

It's so disheartening that you have to deal with a medical community that doesn't understand EB. And I'm not trying to be mean, I'm an RN and I had never heard of EB either. But a little compassion wouldn't hurt.
I'm so glad for the good test results though.
Keep up the good work advocating for Jonah!

Heather said...

I'm sorry for what you all went through but very happy to hear the good report! I'm sorry the doctor and nurse didn't know more about EB : ( I hope Jonah sleeps well for you today and that you can get some rest.
Oh, BTW, did they tell you the barium can constipate them and turn their poop white? It did with my son.

in a world surrounded by men said...

I think those people should save the "you're not a very good Christian" for another blog entirely.

Oh, or maybe just save it. period.

Glad to hear the good news about Jonah. I'm sorry that you had to go through such torture.

The Alger Family said...

Great news! And your post was humorous as always. You always find a way to lighten the situation. I hear you on the filter too. If I wrote down all the italics from my day I'd take up an essay book!

Laura said...

So thankful for a good report! I'm so glad you can laugh in the midst of everything.

Hope you all slept well!

Leah said...

I am so glad that he is ok. Geez! What a day! I have no idea what it's like to be in your shoes with a baby with EB. You seem like the sweetest person in the world and I know that you love your son more than anything in the entire world. I would like to encourange to to start taking names and kicking ass. I know you are bold for your son and do everything you can for him. I personally would have lost my friggin mind...and would NOT have been nice to them. If a nurse would have told me that I would have been yelling! Next time though, you should say those things out lout instead of only thinking them!! It's so awesome to see you standing up for him and loving him with everything in you. He is just so cute/handsome/beautiful. Seriously...every time I see his photos I think he's even cuter than the last!

Linda said...

Hi Patrice:
Just checking in to see how Jonah made out with his test. Thank God no strictures.
You and Matt are great advocates for EB. Keep up the good work and give Jonah a hug and kiss for me. Take care. Love Leah's Nana

Melissa said...

WOW - you handle yourself so much better in these situations that I probably would. I can't imagine the amount of self-restraint that you must use on a regular basis. I am so glad that you got good news!

Toni :O) said...

Glad to hear it went as well as could be expected. You both did an awesome job and remember, you are your child's advocate and don't let anyone tell you anything differently! Here's hoping rest and better days are ahead for you all!

Jen Burns said...

I can't believe people actually send you stupid comments about "being a good christian"....I get that stressed out just getting the kids' prof. photos done! Are you kidding me? :) I'm praising God for a great news appointment. Happy for you!

WendyBee said...

Oh, Patrice, Just so you know, I didn't think you were hating on anybody. I totally get it.
Praise God for no strictures. Praise Him for the fortitude to get through that whole experience.
Peaceful sleep wishes to you all!
WendyBee

Cristin said...

PRAISE THE LORD!

PS. I "think" many of the comments you "thought" today at the doctor and my child is healthy. I would probably go crazy in a doctors office if my child had special needs. You should be so proud of how you handle these situations!

Prayers for you always!

Tara said...

Great news! It's so frustrating not to just be able to explain to a baby, "I know this stinks, but it'll be really quick and it's what's best for you, I promise." But Jonah sounds like he handled it all fairly well. What a trooper :) By the way, your commentary was hilarious!

Erin said...

wonderful news that the appt. went great other than the dr. and nurse being a little clueless about Jonah and his needs~ but i totally would have felt the same way. and about people saying things about your christanity....we are aloud to have feelings that aren't always plesant or cuss a cat in our head or for that matter even saying them out loud! not perfect just forgiven right!? so glad ya'll got some good rest! much love and blessings~erin

Tricia said...

Oh, Patrice, you are a phenomenal follower of Jesus under extreme circumstances that most people would not have the strength to endure, much less endure with grace like you do.

I understand wishing the doctors could get everything together and make all decisions before you get there, but honestly, the ones who ask you what you think are often the best ones because they know you know your baby better than anyone and they trust your judgement coupled with their expertise.

I am glad it went so well and that they found nothing wrong.

I will keep praying for you, Matt, and Jonah. God bless you.

Barbara said...

Just had to tell you your post had me really laughing today - I love humor - and even if it was not funny then - life with EB really needs humor. I love it when we go into weigh AJ and they ask us to remove bandages - they are so stuck in their routine - they just don't think. I tell them fine but they will need to have a room and a nurse available for the next 1 1/2 hours to help get him bandaged again. That usually takes care of it. I have found that pictures work great - before our derm appointment - I take pictures the day before (when we are doing bandage changes), I print them at home and then the dr can SEE his skin - if they have any questions about an area - we can just unwrap that area.

Have a great day.

Barbara and AJ (24 months RDEB)

RLR said...

We had to have this same test done on our Jonah when he was 3.5 weeks old. Apparently, not much chart reading was going on, as they didn't have a bottle. Since I'd brought my boy to the dr with little more than a spare diaper and a bottle of pedialyte, then been admitted to the hospital... Well, you know better than I do the frustration.
It's an awful test - the contraption they strap them into is awkward at the very least. I'm glad that in the end you got GOOD NEWS!

CastingCares said...

I'm so happy for the great results! I think you, Matt & Jonah did great under the circumstances. Thanks for you honesty.

Stephens Family News said...

Hi Patrice,

I think that the Lord has given you an awesome gift of expressing even the most difficult experiences with humor! I mean seriously...you give a whole new meaning to "LOL"!!! :o)

I'm a Speech Therapist, and observed some Modified Barium Swallow studies with some patients (children) in Grad School. "Have some chalk" is a good description!
You'd think they would be able to come up with something a bit less NASTY for patients to swallow, especially for babies and children.

SOOO glad that all looks good and that there are no strictures!! Even happier that Jonah drank a lot of NON-NASTY liquid after the testing to hopefully erase the "chalk" taste from his memory!!

You're a great Mom, and I believe that God is doing a great work in you and through you!

Debbie,mother of two said...

Glad to hear about the test,good news. Sorry about all the issues though with the doc and nurse. I am sorry someone should have informed them of Jonah coming and what they would be facing. I am a nurse and I know that I would want to be prepared and feel like I had done the best for my patient. You were a great advocate for your baby. I am sorry that you had to go through all this. I know that both of you were stressed about what they would do to Jonah. Get some rest all of you and enjoy the good news.

Our Family Circus! said...

you rock! your family blog button is on our blog! keep the faith :)

Libby said...

Phew! Congratulations on making it through and the great news! We notice similar (though not as problematic) issues going to my OB practice--everyone has to re-collect the same information every time they come in! Yikes!

Cristi said...

It seems to me that you are an awesome Christian and you are using a tremendous amount of God given strength to take care of your precious baby son. God Bless!

Erin said...

Wow, you went through alot! Seriously, I don't know if I would have been able to remain as calm as you with that nurse and doctor, I think I would probably have lost it. I am so glad though that results were good. Praying that you get some much needed rest tonight and wake up feeling refreshed. You are so strong!

Following HIM said...

Awesome news about the strictures! I totally loved your commentary in the story. Made my day! I know it may not have been funny to you, but still, you made my day.
~Elyse

Lelan @ Good Gravy! said...

Oh my goodness, what an ordeal! So very glad that the results turned out well.

April S. said...

I have been reading your blog for a long time but have never commented. You are an amazing mother! Don't ever let anyone tell you different. You put baby Jonah first and speak up for him when he can't. We pray for Jonah daily in our house and I am glad to hear today's appointment went well.

Denise said...

God bless you and your precious baby! I'm glad you got a new report. I totally understand your thoughts where the Dr. and Nurse were concerned, I never will forget the time while my guy was hospitalized, I stepped off the elevator to my baby's shrieks to find two nurses holding him down and my mom in tears begging them to stop, they didn't even realize they were working with a former 24 weeker preemie with major issues, they hadn't read his charts, they didn't care.....
He was covered in bruises! I have a new 2 stick policy now, 2 tries then you get someone better!

LisaL said...

That's great news! Was thinking about you guys all night. Did they say if they saw the reflux during the test?

Jessica said...

so great to hear the news! what a brave boy he is to go through all that (and a brave mom too!).

Karen said...

I read your blog every day and I am amazed at you endurance and patience.If people are critical it is because they don't have a clue, but our Lord gets it, and I praise Him with you over these test results.
Karen

thorney said...

Great news. I am so glad to hear this. Thank God.

I hope you and Matt are able to get some rest and sleep.

--Mari

Michelle Found said...

Au contraire, Patrice!
YOU ARE A VERY GOOD CHRISTIAN!

I think your "thoughts in italics" are hilarious. You are such a comedian! I think that's part of what helps you deal with Jonah's EB. At least "I" find humour the best therapy for my own stressful situations.

Glad the outcome of the x-ray was good news.

And Jonah? No more PUKE ALERTS, ok buddy? And give Momma & Daddy some time to sleep.... trust me... a restful Momma is a happy Momma! haha

~Michelle Found
Picton, Ontario, Canada
www.fiddlersfound.blogspot.com

the-mommy-person said...

You are totally a good Christian. Jesus got mad plenty o times! You are also a super awesome madre! Prayers. God's continued blessings.

Amber said...

What wonderful news! Praise God! Congratulations to all of you for making it through such a trying procedure.

I can totally relate. My daughter (3yrs) had a VCUG (in probably the same room as Jonah). The nurse and tech were equally as terse and rude (only male, so unfortunately there's more than one of them). She had to have a dye study of her urinary tract and the specialist wanted to sedate her to minimize trauma. Unfortunately she also had sedated radiation that day (in addition to chemo) and could only be sedated once, so it had to be done fully awake. They were rude and unaccomodating. As she lay there screaming strapped to that 4in wide board with that machine inches from her face, legs tied open with a catheter- I lost it.

Then they tell you to have them relax so they can pee on the table for the scan, but you can't touch them! It was horrible. Prayer is the only thing that gets us all through it! (Very thankful hers was good news too.)

We are called and chosen by God to be our child's parent. We must be their advocate, caregiver, comforter, and at times medical specialist. You have learned to do it well, with grace, and to think fast on your feet. Don't EVER feel like you have to apologize. Doctors and nurses have a lot on their plate at any one time and we have insight into our children that no one else will ever have.

Trust your gut, love that boy, and lean on God :) Praying for endurance and strength for all of you!

brandie said...

Great post, and great news! Sweet little Jonah-big hugs to you!

Cathy said...

I understand the nurse and doctor thing completely. My husband is paraplegic and we go to an orthopedic surgeon and he wants to know if he can stand and walk at all!! No, he is paralyzed and we have not had a miracle yet!! It has only been 24 years, I don't think it's happening. I have read your blog thru my sister's blog for a long time and have been praying for Joshua and for you and your husband. Being a caregiver is a hard job and "if you don't live it, you don't know it!" I will continue to keep you all in my prayers!!

Beth.. One Blessed Nana said...

You have a definite way with words, Patrice. You just keep me laughing!

Jonah is so blessed to have such an awesome mother to take care of him. You are a strong and very amazing mama.

Praying for Jonah!

Staci said...

If there has ever been a parent who hasn't had those moments of stress when they get frustrated with a dr. or other medical personnel when their child is sick or hurt I'd be surprised. You have to worry about every detail of a simple x-ray because of Jonah's condition. I don't think anyone should look down on you for feeling frustrated.

Ingrid said...

Replying late on this post, so I'm not sure you'll see it, but I wanted you to know that you have the most incredible way with words Patrice! I start to feel guilty when I read your posts because I end up laughing. You make everything - good and bad - so real. Jonah is such a lucky boy to have you guys as his parents. And you guys are very lucky to have Jonah as your sweet precious little boy. He is just adorable and very handsome too!
We pray for your family every day.
(((hugs)))
ingrid