Wednesday, April 29, 2009

a special gift

So I got a special gift today. A massage! My friend Gina (who is staying with me today) had a masseuse come. (I just had to look up how to spell masseuse because this is SO out of my league... seriously, I've only had my nails done three times in my life.) She did my back and shoulders, and it was AWESOME! She said, "You really have a lot of stress and tension up here." Ya think? :) I could feel her moving knots around in my back - weird. Anyway, it was gloriously wonderful, and I'm thankful to her, to Gina, and to God for it. Amazing how it has lifted my spirits. I wanted to take pictures, but it was a little difficult seeing how I was getting a massage and all. Did I mention I got a massage?

Jonah has eaten really well in the last 24 hours (21.5 ounces to be exact!), so thank you so much for praying. Now if we could just work on consistency - rather than him eating like that today and then taking only 14 tomorrow.

He stayed awake all during his bandage change last night. He literally fought sleep the whole two hours, and then was wide awake and happy for a good 30 minutes afterwards before giving in. Little stinker. I think he stayed awake just to spite us. He did pretty well considering, but I definitely prefer a sedate baby rather than a thrashing baby when it comes to actually being able to wrap him well. I'm encouraged, though, that he can be awake and not screaming. I hope that's the case once he's not on morphine anymore. I'm eager for and terrified of that day all at the same time. Once we've moved everything downstairs, I'd like to get a TV and DVD player set up within his eyesight, so we can try some baby Einstein videos. Right now, we're sticking to some CD's (thanks to you guys) and Pandora. Pandora is right up there with Target on my list. We're hoping the basement will be finished within the next two weeks. WOO-HOO!

He cooed for the first time last night. No, not at me. But it was at daddy (the only acceptable alternative when it comes to firsts). I try to take video, but he seems to stop whatever cute thing it is the second I turn on the camera. Plus, any time I try to upload a video to blogger, I can leave it all day, and it still won't upload. The only way I've found to do it is to load it to youtube and then embed the video in my blog (which is EXTREMELY time consuming). I don't know what the deal is. I'm not very savvy.

Jonah has his two month check-up tomorrow. (Yes, he turned two months on Monday. No, I didn't take any pictures or blog about it. Yes, I regret it.) He will have to get shots and will have to have 5-10 cc's of blood drawn (that's a lot for a baby) for the genetic testing the geneticist has requested. I'm very sad about all of it, and if Matt had more PTO left, he would be going and not me. I will cry, I'm pretty sure. In addition to the normal anxiety of all that, I'll have to unwrap and wrap his upper thighs as well as his arms while we're there... part of that AFTER shots and blood draws without pain meds. Good times. Matt's mom will be going with me, so at least I won't be going through it alone.

He's been doing this crazy maniacal cry and startle today. He'll be lying on the changing table or in my arms perfectly content, and then, all of a sudden, without warning, he startles, gets this crazy scared look in his eyes, sticks his arms and legs straight out, and screams hysterically. I have to put my face right in his face and talk him down from it (which takes several minutes). It's really strange, and it's not caused (as far as I can tell) by external circumstances. I don't know what it is that's scaring him. It's hard to see that look in his eyes, though. He seems so scared.

As always, thanks for all your prayers and for praying for me when I have a hard time finding the words. I'm feeling much more uplifted and rejuvenated today. I miss my intimate relationship with the Father, and I want so badly to be on my way back. Today I've felt closer than I have in a long time, and I'm excited to have Him carry me back. Now I just have to stop kicking and screaming to get down and hang on for dear life. And with Him, it is a dear life.

Today's shout-outs:
- Gina - for sending Terre to give me a massage. Did I mention I got a massage?
- Nurse Brian from the pediatrician's office for taking Jonah's morphine prescription to the pharmacy (they wouldn't accept it from the doctor's office over the phone) because I couldn't leave to go get it from the office and take it myself. Above and beyond.
- Jason and Jennifer - for bringing us dinner tonight from El Maguey (the BEST Mexican restaurant in the whole world - trust me). I could buy their sweet tea by the gallon (si lo permitía, pero no (sigh)… así es la vida)


Anonymous said...

So, did you get a massage??

Good luck at the appointment with the unwrapping and all. I'm glad someone will go with you!

AND...Mexican food sounds really good :)


Nicole said...

Will be praying tomorrow.

Hope the startle thing goes away soon. It sounds like it could possibly be from pain, gas bubble maybe?

Wow, two months already!

Becca Barnhart said...

Thanks for the update, I'm always eager to hear how Jonah's days are going. You are sounding better and better too over the last couple of posts! Continuing to pray for Jonah in Arkansas!

Amy Britt said...

Regarding the blood draws and shots... Can Jonah use EMLA cream? You put on the draw/shot site and wait 30 minutes. They don't feel a thing!

Shosh said...

Re: the video upload. Are you using AOL by any chance? When I have my blog open in AOL it won't upload but in internet explorer ir will (takes a long time - maybe 30 minutes for a 1-2 minute video) but it still works.

Re: the startling - my oldest used to do that. He wouldn't sleep unless swaddled because he would wake himself up by startling. is jonah able to be swaddled?

Re: everything else. Hope you enjoyed your massage, jonah is adorable, good luck tomorrow!

Sara said...

You might be able to get this before his appointment, but there is a topical cream out there called EMLA cream. It numbs the skin so the prick of the needle doesn't hurt as much. You have to apply it two hours before hand. We have some, but never had much luck with it but I know others with EB have had luck with it. Here is a web site about it

Kristine said...

Just an FYI...the contents of most shots sting when once it is injected. So as much as I would like to think Elma works, it only numbs the skin and doesn't help with the stinging.

Anonymous said...

My daughter had the startle thing. It's called the Moro (sp?) reflex and it's totally normal. It is when they feel like they are suddenly falling and the reach is an instinct to try to grab something. They eventually grow out of it. Sophie's was worse when she was tired. Swaddling helped but I don't know what your EB options are. Continuing to pray.

Anonymous said...

Glad you got some down time and a massage. Continuing to pray for Jonah.

Rochel said...

I had the same trouble uploading videos to my blog too...It would take FOREVER, and then I would just give up...however, I started actually putting the video on my computer rather than trying to upload it directly from the camera, and it seemed to work a lot better. It still takes a while, but I can usually upload it in about 10-15 minutes. I also don't usually take videos for much longer than 45 seconds, because that takes way long...but I have uploaded up to 1 minute, and I have a friend that uploads 2-3 min. videos all the time...but she's way more patient than I am :)
Hope that helps-I would LOVE to see videos of Jonah!

Mandy and Russel said...

I'm so glad to hear joy in your "voice" :) I read your blog everyday and I pray for you all the time. I'm sure you know this by now but you are an inspiration to so many people. And all of them are praying for you and standing behind you!!

Mandy in KY

Ryan, Kim and Caroline said...


I'm so glad you're feeling more relaxed and more "yourself". Didn't you say something about a massage? Maybe you should treat yourself to that more often. Remember, you can only relax and comfort Jonah when YOU are calm and relaxed yourself. Babies can pick up on that stress, you know. =)

Keep your posts coming (when you have the time, which I know you have buckets of). We're still praying for that sweet bundle of joy!


p.s. Try uploading your videos to photobucket and have them insert it into your blog. Works like a charm for me. =)

Lorraine-bo said...

Woo hoo! 2 months! Way to stay strong, Jonah!

Woo hoo! Mom got a massage!!

Extra Angels from God tomorrow as you experience shots and re-wrapping at the doctor's office.

Extra sweet little blessings over Jonah - that he would see the Lord comforting him when he startles.

sstoga said...

My infant daughter also does that startle from the Moro reflex. It starts to lessen around 12 weeks as their neurologic system starts to mature, I'm told.

Good luck tomorrow!

Leedra said...

Massage....nothing like it. Still praying, even when I don't visit.

Leedra’s Photos For FunLeedra’s Greeting CardsPhotography By Leedra

Rebekah said...

I would love to see video of Jonah. I hope you can get it to work some day. :)

Melissa said...

A massage, huh? You lucky girl! But you deserve it!! I'm glad Jonah's eating better today, though I'm sorry to hear about the shots & blood draw tomorrow. As for the startling thing...mine have both done it from time to time when they were little. I know that there have been times when I was asleep (you know that dreamy not-quite-deep-asleep but not-quite-awake phase?) and I have startled myself because I felt like I was falling off the bed (embarrassing, but that's what it felt like), though I was really safe & sound. Anyway, I always assumed their's was probably the same. Maybe so with Jonah, too??? I don't know with the EB how snugly you can wrap him, but if it's possible, maybe try what I used to do with my kids...make them a baby's basically just tucking them in snug, but they liked being called baby burritos, LOL. Good luck tomorrow!

Toni :O) said...

Oh yay...can I just say your enthusiasm was contagious?!I'm SO happy for you that you got to relax and get a wonderful deserving. I hope you have a wonderful evening and you got to enjoy your dinner. Mexican is MY favorite! Yummy! Thanks for always brightens my day to read about your sweet little boy. Good luck tomorrow...hope it all goes well and I'm glad you will have someone else there with you. I'll say another special prayer for you guys tomorrow! Take care and here's to a fresh new day because God is so good.

Courtney said...

So it's probably a little late for this round of shots but maybe you could read up on postponing shots for Jonah for a little while? I know you are the parents and you must do what is best for your family but some people don't know it is an option. I'm glad someone told me about this when I didn't even know. I think you guys are doing a great job!
Do you think the meds are causing him to holucinate (? don't know how to spell that)

Anonymous said...

I don't mean to scare you and I don't know how likely this is, but the staring/screaming sounds like it may be a seizure. I work in a pediatric therapy clinic in Green Bay, WI, so I have seen lots of kids with seizures.

I hope it is just a startle, but you may want to ask the pediatrician tomorrow.

Sara in WI

Courtney said...

er..maybe I should add that I had a thought that it could be causing the startling since there was screaming involved. Mine startled but didnt' cry. Maybe the crying is normal though?

Anonymous said...

Hooray for your massage - you are totally deserving!!

As you've been told, the "startled" issue is daughter, who is now 3 yrs old, had it for at least the first 2 months of life. Jonah will outgrow it, don't worry.

And I live in Pfafftown and COMPLETELY agree that El Maguey is the best Mexican restaurant. EVER. I had it just tonight, in fact. A bean burrito smothered in their queso dip (instead of the red/onion sauce)...MMMM...I want some more! :) And don't even get me started on their sweet tea. WOW.

Always in our prayers -
The Robbins Family

Anonymous said...

One thought about Jonah's startling and daughter was on morphine and ativan then weaned to methadone and ativan. She was on painkillers for a looong time. She did the same thing but it wasn't due to the moro reflex since she was still doing it at 7 months old. I was told by her doctors that this was due to the drugs more specifically the methadone. This behavior did stop once she was off of them. I'm sure you'll talk to Jonah's ped. about it :) It's a hard and long process to wean these babies (we make them junkies for their own good) but in the end it's all worth it. Once my daughter was off of painkillers it was like she was a different baby. Our prayers are lifted up daily for your family.

Anonymous said...

Yay for a massage....ahhhhh! Mason did the startle thing too, which I think is fairly common. It does scare you to death when they do it. Let me know when you are due for a house cleaning? Love!

Nathan, Lindsey & Mason

Nancy said...

Yay for mexican food and massages! Baby Einstein = baby crack! Noah LOVES it, it mesmorizes him.

Amber Schmidt said...

Now THAT is a friend indeed! I think you were definitely in need of a massage! Glad to hear that you thoroughly enjoyed it!

Praying that mr. jonah continues to be on the up and up eating and that the check up goes good.

Hugs and prayers!

blessedmomto7 said...

Noone deserves that massage more than you. AH!! What a good day!

Anonymous said...

The startle thing could also be related to his reflux. My little one would do that also when she had a little reflux of milk, sometimes she'd even seem to stop breathing for a second. Then once she swallowed she'd scream uncontrollably.

jandkland said...

I'm so glad you got to get away in your mind to a place of peace and calm. I'm glad your tired, tense body got some attention that it desperately needs. What a friend you have!

I pray that the appointment goes as well as it can. None of us mommies like to see our babies in pain, and you've had to do that many more times than most mommies. Praying!

--Kelley in GA (

RLR said...

Haven't posted in a while but I think of you often (and check the blog daily). Glad to know that you are feeling better. Hooray for the massage - aren't they wonderful? Which reminds me, I have a gift certificate I need to use....

Anonymous said...

Thank you and sweet Jonah for making this a special day for me, I loved every minute I had with you both,what a blessing.

Jonah you have won Gee Gee's heart and yes I will get you a pony, my sweet boy.

Love you
Praying for a healing

Crystal said...

My son Bradon did the same thing with the startle thing. One moment he would be fine and then he would get real stiff arms streached out and then after a second or 2 he would scream. It was like he was getting the air knocked out of him. It was very scary. He also developed a head tilt and was seen by eye doctors and had his hearing tested. After about 1 year of strange things the head tilt went away the stratle thing went away around 5 months. He is now 3 and has never again had problems.
I would mention it to the doctor to be safe but he is probley just fine :) I hope all goes well with your little man with his shots.

Kelli said...

Did someone say massage? I KNOW you really LOVED it!! Praying for Johah's checkup.. and for you too!!

Amanda said...

LOVE El Maguey! What a treat! Praying for you guys!

Anonymous said...
This comment has been removed by a blog administrator.
teacheroftwos said...

I am praying for the fear that Baby Jonah is experiencing to leave him right now in Jesus' name.

Mike & Mindy Aumann said...

My son had similar startling & screaming when he was on morphine. We were able to switch him to tyl & codeine and that went away. Will be praying for the dr office visit tomorrow!

Jenn said...

Good luck tomorrow. Praying it goes smoothly.

I totally agree that El Maguey is the best Mexican in that part of NC!

Stephanie said...

glad you had a better day today and got a wonderful massage. What a great friend you have!!!!

Continuing to pray for Jonah...praying for everything to go well tomorrow with the bandage changes at the doctors office!!!!

RyanLaurenAbby said...
This comment has been removed by the author.
Anonymous said...

Have you tried the Praise Baby Videos? Jonah will LOVE them and so will you. Very simple but I've never seen a baby/toddler who didn't love watching them. Check it out!

Nora Lee said...

So glad Gina treated you to a massage; I love them too! Many prayers for Jonah at his appointment tomorrow.

Sometimes babies have a startle reflex that should go away soon, it is scary to watch, but I remember it being pretty normal with my babies.


Laura A said...

Hi Patrice-

That 2-month checkup is so hard - I think it's harder on the mom than it is the kid! I'll pray for Jonah to have as pain-free an experience as possible, and for you to have peace and strength to get him through it.

I had just written an epistle here about Jonah's eating, and then realized 1) you didn't ask for my advice, and 2) you probably don't have time to read it! So I deleted it. I hope he continues to eat well, and consistently, too!

Glad you got a massage - I know I could use one!! Will continue to pray for you, Matt and Jonah.

Laura in TX

Anonymous said...

Hey Patrice,

I just wanted to encourage you to do what you and Matt feel is best for Jonah. If you don't feel its the right time- or too much hassle- skip the shots for now and get them later. I know its hard the first time going through all this- but seriously its up to you if and when he gets his shots(and testing). Don't feel pressured, I'm telling you as a mom of 4 myself. I felt I "had" to do everything how "they" told me to with my first, but as time moves on and more children come- along with wisdom- do what feels right and what God tells you- not mans timing, but Gods.
I believe you and Matt will make the right choices 100%. You know your baby boy better than anyone, he's your flesh and blood after all:)
Praying for strength, love, peace, unity and HEALING for Jonah and your family.

Marine Momma said...

Izaak used to do that startle thing too. He would just look SO scared all of a sudden and start screaming! I don't know what in the world that is but he seems to have grown out of it. But I had to do the same thing; put my face right down by his and talk him out of it. He did it in his sleep a couple times too. It scared me. Glad it's over now.

Anonymous said...

Have you heard of the "Praise Baby" DVDS? They are the best things in the world!! They always calmed my baby even if she was screaming her head soon as the little blue house came on the screen she would start grinning. Even now, she is 17 months old and still adores them. And the music is so soothing for mommy to hear over and over too!! Definitely worth the investment. Hope they will bring some comfort to all of you during such a hard task.

Praying for y'all daily and praising God for the treasure that Jonah is! And what a cutie pie too!!!!!!!

valerie said...

What a perfect gift you received from Gina! How sweet of her!
I am so glad that lifted your spirits.
I imagine it felt wonderful.
The Mexican food sounds delicious too. Thank God for the encouraging friends and family you have.
I'm so glad I have the "Praying For Jonah" button on my blog. I am reminded to pray every time I get on here. Others who read my blog who don't even have blogs have told me they pray for Jonah too.
That is pretty special & I know God hears each and every one of them and is touched by the faith we have in Jesus' healing power & ability to give peace and strength in the midst of trials.
Love & prayers,

dragonflyz in June said...

I am so happy you had such a wonderful and relaxing day. I will pray for your apointment tomorrow, that it goes smoothly. My son, Jonah, had his 2month shots just a few weeks ago, late b/c he has been so sick (2 UTI's) and he did not like the experience. I was not sure if they would be doing it so I didn't give him Tylenol/Tempra before hand, next time I will be better prepared. He spiked low grade fevers off and on for 72 hours afterwards.

How will they draw blood for Jonah without causing him harm? I am interested in finding the process for him. Let us know tomorrow night how it goes. Thank the Lord that you will have help. Poor little baby, I pray that he is not in too much pain.

God Bless

Regina said...

Someone mentioned that the startle thing he's just started could be a seizure. It could just be the normal startle reflex babies have but it seems strange that he suddenly just started this. Usually it's evident from the very beginning. You could check out the videos on youtube of infantile spasms to see if what he's doing looks anything like those. Or maybe it's from the medications like a few others mentioned.

I'd have to agree with some of the others about delaying his shots as well. At least read up about it. I've seen devastating effects on young children from reactions to certain vaccines. Though not all! Whatever you decide will be what's right for your family, no matter what the rest of us think!

I hope things go well tomorrow!

Anonymous said...

SO glad you were able to get a massage! Yahoo!

I want what I am about to say to come across in love, and not judgement or anthing like it. I just feel lead to share with you this. Try and make sure that you are not "babying" Jonah. For example, come running at his every cry or give him whatever he wants whenever. I can't imagine how hard this would be not to do this, but just wanted to encourage you in this. Also, want to encourage you to parent him as close to what a baby without EB would need to be parented. This may be very difficult, but if not done you may all, including Jonah reap bad habits from this.

I pray that you take my comment with a grain of salt that is dipped in love! With God all things are possible!

In Him,

Covey and Justin said...

As far as videos--my kids loved the Kidsongs videos--it is a bunch of kids singing songs. I have a 2 a 1 and one on the way and the 2 and 1 year old both love them. We got them for less than a dollar a each on ebay and in the bargain bins at Walmart.

Anonymous said...

As many Moms have said before me,the startle reflex is perfectly normal, although not always pleasant. All 3 of my little ones did it, they would b sound asleep than just start screaming. It's a little frightening till you know that it's normal. Hopefully it helps knowing that others have been there too! Good luck with the shots, you & Jonah will be in our prayers. Hope you enjoyed the massage, YOU deserve one!

In HIS love,

The Burgess Family said...

Praying for an easy time at the doctors office and for Jonah to be finished with the terrors he is having!! SO GLAD to hear that he is eating well!!

dogmom said...

Aren't massages the best?? I could get one every day! I'm praying for Jonah to heal. I check your blog on a daily basis.
God Bless!

Mama & Papa Griz said...

You said that he is still on Morphine?!? The startle could be a cause of that. My son had nine surgeries before he was 4 yrs and we found that he had very vivid dreams on morphine, he would do the same things. So they had to switch his pain meds and that seemed to do the trick. He had to have another surgery this past year and they thought they would try giving him the morphine agian, BIG mistake. He ended up removing his own iv thinking it was a spider he needed to get off of himself.
Just a thought. Hope it helps.

EHW said...

Praying for you, Jonah, and your mother-in-law... that God sends lots of comfort/patience/peace/strength during the dr's appointment today!!!

If anyone deserves a massage, it's YOU!!! How AWESOME!!!

Much Love and Many PRAYERS from Elaine in Lubbock, TX

The Lewis Family said...

Hello - not sure what your cable/satellite carrier is but Directv and Dish off the "baby first" channel which is wonderful! Check it out if possible!

Melissa said...

Massage! So happy for you there.

Let's see, stress and tension, you say? Well, in the last two months you've only experienced labor, delivery, a sick child, trips back and forth from the hospital for, what, a month? Then home, only to go through the exhausting routine of caring for a newborn while your hormones bounce around and try to get back to normal. Sounds to me like you deserve a massage on a regular basis. Go for it!

Still praying here in NM. Love and blessings,

Grape News said...

Steve Green has a kids video too. It's kinda old (funny clothes as my 6 year old says), but my kiddies love it. I think it's called Hide Em' in Your Heart! Massage every day sounds perfect.

Cassidy said...

I would recommend Lullaby Time from the Baby Einsteins. We've already worn out one DVD with Riley. Talk about put you in calm and Matt may even find yourselves "feeling sleepy."

Heather, Stan and the kids said...

hey :) just wanted to mention that Praise Baby dvds are the best thing ever! you know-just for when jonah is set up in his new digs :) I have 5 kids and only found praise baby after our 4th. ALL my kids will watch them :) plus it fills your house with some great worship music that you can enjoy too :)
Our family is still praying for you guys
Grace and peace,