Friday, August 28, 2009

six month check-up

Jonah had his six month check-up today. He did pretty well. He got one oral vaccine (which he puked all over the place... we've had quite the pukey day today... I've changed his chest bandage three times...), 2 other vaccines, and a flu shot. They tell me EB babies have a high tolerance to pain, which must be true because I was talking to him and playing with him, and he just laughed his way through the first shot. He did cry for the next one, and the nurse said that one always hurts them. He seemed fine tonight though. He never runs a fever or gets extra fussy (or even extra tired) when he gets shots. His height and weight are both between the 25th and 50th percentile. His growth is great, and the doctor was just so pleased with how he's growing. She thinks it's a God-thing too, because it sure doesn't make worldly sense how he keeps pulling it off.

They did well today, and I'm happy to report there was no injection-site-rubbing or tongue-depressing. He was handled with great care. :)

I LOVE Dr. B. She is just so sweet, and she spends so much time with us. I never feel rushed or like she's doing an "obligatory" visit. She spent at least a half an hour with us today. And honestly, the appointment ended up being more about me than about Jonah. I had a slight emotional breakdown and pretty much went off about everything from sleep deprivation to what's wrong with the health care system in our country (soap box much?). She was so sweet, and just kept saying she wishes there was more that she could do for us and that they're here for us. And they are. And I love that. And I'm better now... sort of.

It's been a tough one. On the days where he vomits much and sleeps little, I get more overwhelmed. But usually he follows up with a wonderfully non-vomitous day, and things always seem brighter in the morning. And it's Matt's night tonight, so I'm hoping for some nice sleep.

He semi-put himself to sleep tonight. We fed him. He puked. We fed him some more. He puked some more. So by that time he was very awake, to say the least. So then we just put him in bed and turned on his mobile. I stayed in his room but out of sight, and after about thirty minutes, he got really quiet. I went over, and his eyes were closed, and he was rubbing his face, so I just held his hand down by his side for about ten seconds, and he was gone. I'm hoping this can kind of start being a habit. Dr. B says he's probably waking up so much at night for butt-pattings, because he just doesn't know how to get back to sleep on his own. She knows that crying it out is not an option, but this is kind of a modified talk-yourself-to-sleep method, and I'm hoping we can work with him on this.

Oh, I've been invited to speak at my first event. I don't want to give the details yet, because it's just been a game of phone tag with the organizer, but I've said yes to her voicemail. I'm totally nervous and kind of want to throw up in my mouth a little bit, but I really believe in the event, and really want to be involved however I can. I'm excited but scared out of my mind. Even though I love to talk and am a (former) teacher, I still get really nervous with public speaking. It's kind of one of those things that I freak out about until the moment I start talking, and then the nerves kind of just go away. I'm hoping that will be the case this time... you know, if it works out. I'll keep you posted.

Well, I'm off to bed. This very long day has come to an end. But I'm still thankful for it. I hope I never sound ungrateful when I'm having these tough days. I'm definitely not. I thank God every day for Jonah, and even if the circumstances are less than ideal, I'll do what I need to do for him and will praise God for every moment I get with him. Please don't misread exhaustion for ingratitude. He is so great! He's stolen my heart.


Rachel said...

Good luck with your upcoming speaking engagement! Your blog posts are so well written and witty :). You will be a great speaker :).
Praying for you!

~Rachel in IL

Anonymous said...

Am I really the first to comment?? Patrice, you never skin ungrateful- it is very obvious that you love Jonah very much, and are the best Mom he could ever want! His blog is your outlet and if you need to vent about a tough day, well you just go right ahead! Any mom that says she never has a tough/down lying! I too had a puker and all I had to do was change clothing! I can't imagine what you go through!

Please know that I pray for you and Matt every night (and baby J too!) and I know He hears! Sleep tight and get some rest!

~Dana in MS

Anonymous said...

Sorry for my typos! My iPhone and I aren't gettin along well tonight! AND, I missed the being the first poster! Darn iPhone keyboard!

~Dana in MS

Tricia said...

You sound like a loving, devoted, adoring mother. Often, a good ped does seem to sepnd more time with the parent than the child because they know that the parent knows the child best; the parent is thier biggest source of information. Caring for the parent makes caring for the child more effective. I will pray you get some rest tonight. God bless.

dg darling said...

Honey(said with attitude;)-never feel you have to apologize for a long day. We all have em (your's do seem longer than most for obvious reasons though:) and we all get tired, frustrated and overwhelmed. We never think you are ungrateful and we all know that you are a wonderful mother. Good luck on a solid nights rest and may tomorrow be puke free!

Shana said...

Happy 6 months!! I just love reading your updates & I SO enjoy your sense of humor!! Keep up the good work mom & try to get some rest =0)

Anonymous said...

LOVE.LOVE.LOVE. the new posts...yesterday's was awesome! Happy half birthday Jonah! Loved the new photo's...his face is looking so cute, full and round these days. I am so happy you had a good 6 month check up. Will have to show my 2 year old yesterday's post...most of the time he is looking at your blog with me and loves to see pictures of baby Jonah...he loves to sing happy, I am sure we will be singing happy birthday to Jonah tommorrow! Also, you have such a wonderful idea on the 1/2 birthday idea family activity! I have one born in Feb and one in Nov. I think I will join in on your idea!
Thanks for being the awesome family you are and sharing your life with the world!
Wendee in Lewisville

Katherine said...

So excited to hear the news about your speaking engagement! That sounds great. I've loved seeing Jonah's sweet face over the last few days. It's hard to believe how much he's grown ... I have to pinch myself when I realize he's 6 months old already!

Anonymous said...

A blog is to tell how you really feel right! Isn't that why you have one??? So you just go right ahead and vent.

I am excited about your speaking event. Can't wait to hear more details.

I have had the pleasure of being a part of a telethon for the Ronald Mcdonald house and just a few days ago I was interviewed for the Children's Miracle Network for our children's hospital. I absolutely love giving back that way and raising awareness. It is kind of therapy for me. (I am the one who has the son with hemophilia) Also gives me a chance to give back to so many others who have helped me and to also be out there for other parents who are newly diagnosed or are just feeling alone in their plight. I sure do feel alone sometimes too as I am sure you do. The hemophilia community is pretty exclusive just as the EB community is.
Don't you just hate Jonah putting him to sleep by himself! I hate my son doing it...he is two now...the other night he woke up when I checked on him so I had the pleasure of sitting in the rocking chair and holding him while he went back to sleep. I didn't want to put him back in the bed because what if that was the last time I got to hold him while he fell asleep? He is getting so big now! If I could I would rock him to sleep every night! There is no way he would do that though...
I didn't do the cry it out thing either...he eventually got to where he could put himself to sleep on his own. He did it when he was ready. Anyhoo! You will really enjoy your speaking engagement I bet! And again ..I can't wait to hear about it! Hope you are sleeping better than I am tonight!

Hugs and prayer!

Jackie said...

I want to hear you speak! You are an incredible writer! You will do great, I am sure!

Krystal said...

You, dear Patrice, are so allowed to be overwhelmed, frustrated, exhausted, and heartbroken over Jonah's struggles with EB and the effects it has on your lives. Being a mother to kids with average issues can be very hard. I think you know you've got way more to do than most. I hope to encourage you with a "virtual hug" from one sister in Christ to another, along with my prayers for God's grace and strength in your lives. You touch me with every post, as I see you being real but also working to love God and honor Him through the struggles. Hugs!

natalie said...

If anyone reads lack of gratitude in this post, the problem belongs to THEM, not you. What mother doesn't get tired? What mother doesn't feel frustrated? What mother who feels those things doesn't STILL LOVE HER CHILD MORE THAN LIFE???

I can't wait to hear about the speaking engagement. As a teacher, I understand the fear of public speaking, despite doing it all the time. There is something about being the's very, very different than being a teacher.

Mama10EE said...

You certainly aren't sounding ungrateful when you vent about tough days. Every mommy has those days and we all want/need to vent. It doesn't make us anything than human. Jonah is such a doll, and I am so glad you continue to share him with us!

Anonymous said...

Oh boy Patrice we all have these days. I remember just wanting the night to come and quick. Have you thought about playing soft baby lullabies for Jonah? I saw a cd in the Buy Buy Baby store today and thought it would be so sweet to fall asleep to something so soothing. Yes the doc is right babies have to learn to put themselves to sleep...especially when they wake up in the middle of the night. It is just so hard to get to the place where you think they can do it alone. Good Luck!

Michelle said...

you could NEVER sound ungrateful. Goodness, you need to be kinder on're doing a great job!!!

Anonymous said...

So glad that you had a great visit with the doctor and that his growth is on track. What a God-thing it is! God is so good! I understand exhaustion. Been there. Still there. Hang in there. He is such a sweetie!
Jennifer in Southeast, NC

Anonymous said...

Beautiful, all of it...I just love to hear how wonderful things are going with the growth and all. I will pray for more sleep because I am a mom of small children and I know what it is like to have ones that NEVER want to sleep. Blessings sister in Christ..I pray many of them over you and your sweet family.

Toni :O) said...

Yay for a successful dr. visit. I'm glad to hear he's doing so well. Congrats on the upcoming speaking event. You'll do SO fantastic, Jonah will be so proud of his mommy one day, I just know it. Hang in there...good days always come with the bad and even though my kids don't have EB, I certainly have my fair share of rough days and less-than-stellar mom me...we all do! Continuing to pray for your sweet boy from Michigan.

Mandi @ It's come to this said...

Happy 6 months!! So glad Jonah had a good dr. visit! I remember you once asked for some possible sleep solutions - other than just crying it out of course! I really didn't have anything at the time, but a girlfriend of mine just tried the "Sleepeasy Solution". Not sure if you've heard it or not, but she was skeptical & after thinking it wasn't going to work ... it did. She's really happy right now:) You may want to check into it b/c it doesn't require Jonah crying it out ... you can read about her experience at

Ok - sorry for the LONG comment!!

Karen said...

I wanted to let you know that I gave you an award on my blog.

I want you to know that I pray for you and Jonah and that I enjoy your blog.


Sandy said...

So sorry for your tough day. There is ABSOLUTELY NO DOUBT that you and Matt love Jonah more than words can ever express. You ARE human and you WILL get down and stressed and frustrated and just darn tired. I have grown to love you guys so much. Please know that I pray for a miracle for Jonah EVERY DAY. I pray that he eats well every day, that there are no new blisters, that blisters will disappear and that he will be healed from the top of his head to the tip of his toes by our Almighty God, Father, Savior, Daddy, Master, Prince of Peace, King of Kings, our Lord of Lords. I pray for you and Matt as well, that you will have peace and that you feel the arms of Jesus wrapped tightly around you at all times.

I'm excited for you about your speaking engagement. Please keep your bloggers informed . . . I'd love to come hear you.

Good night sweet lady.

With Love and Prayers,
Sandy in King

Davene said...

"Please don't misread exhaustion for ingratitude."

Well said, Patrice! Thank you for expressing your own heart so openly and skillfully...and in the process, helping me (and others) have words to say what we're feeling inside, too. I am grateful!

Laura A said...

Hi Patrice-

Praise God for a wonderful 6-month checkup! Sorry about all the puking - that has to be frustrating - but will pray for a peaceful night and reasonably puke-free day tomorrow!

I know you'll do great with your speaking engagement - wish it were close to TX so I could come! I know exactly what you mean about public speaking. I used to sing in church alot (WAY back in the day!) and I was never nervous about it, but getting up to talk was (and is!) a completely different story. Will pray for calmness for you on that!

Hope you're able to make it to church tomorrow, and that you (and Matt!) get some good rest. Give Jonah a hug from Team Anderson in TX!


Elizabeth Mahlou said...

It sounds like you are getting your miracle. Every day is a day of additional hope because medicine improves so rapidly. When my younger daughter was born, she was given 50% chance to live and 30% chance for normal intelligence. She lived and thereafter was predicted to have a life span of 21 years. When she was 3, it was clear that she would have normal intelligence, and we received the good news that a different approach to treatment had been discovered and she could have a normal life span. Today she is 33.

Years ago I took in a dying teenager from Siberia. Today he is 32 years old.

Our younger son was given 0% chance of living by one of the best children's hospitals in the country. I did some research, found a research doctor in another state, and took my son to him. My son will be 30 years old in November.

Last April, my granddaughter was born disassembled. We jokingly call it the Humpty Dumpty syndrome, but it does have a real name: OEIS Complex. The doctors would not give odds; there are almost no living children with it. However, she is now four months old, happy, lively, sociable, and strong. The doctors are planning now for the things that they will have to do to help her through her preschool years. No one is expecting her at this point not to survive.

Miracles happen -- and they happen every day. Keep the faith!

(Oh, I added Jonah to the prayer list at my blog and linked it to your site.)

Sara said...

Parenting is a hard and exhausting job with a perfectly healthy child. I can only imagine your level of exhaustion and anxiety. Keep your head up. You are doing a wonderful job. Good luck on the speaking engagement. Praying for you all in Huntsville, AL!

Amber Schmidt said...

Sigh... I am so sorry to hear you sounding.. exhausted. I pray that God will refresh and restore your heart, mind and body so that you may continue on this journey with a renewed spirit :) Always remember... HIS blessings are NEW every morning.

Lorraine-bo said...

praying for a few non-vomitous days for mr jonah ... and a few more sleep days for you & matt

AnotherDay said...

Hi Patrice,
I had a vomitter (who is now 7 and still does it and no one knows why...) and what I found that worked was to put a water resistant pad over her, right under her chin and down the front of her, when we were going out in the car seat. The pad itself has no seams and has a relatively soft cover. I don't remember the brand but can send you a picture. I wonder if you could even have someone put a "softer edge" up over the top near his chin if it isn't soft enough? It would allow you to get out ;) and the only thing that would have to be washed is the pad and you could have back ups.

I'd love to help you solve this dilema....if I can find another pad can I get one and mail it off to you?

Ki said...

Patrice- I used to judge my day good or bad based on whether or not my son Sam (who has severe GERD) threw up. In fact, sometimes I still do. He's 3 1/2 now and we didn't really get things under control until he was close to 3. What is Jonah taking? Sam had to take the full adult dose of Prevacid (30mg) in the morning, along with Peri-actin, Mylanta & a small dose of erthyromycin (which apparently keeps food moving.) At midday he'd take more erthryomycin and Mylanta. At night he'd take zantac, mylanta, Periactin, erthyromycin, Culturelle and Miralax. If we didn't keep food moving through, he'd throw up. I say all that to say it took all those things in combination and at the right dosage to get him relief. The good news is, now he's down to just Mylanta and Miralax before bed. It's such a helpless feeling when you work so hard to feed them and then they throw it up. At one point Sam lost 4 lbs in about 3 months... and this was when he weighed about 23 lbs. I hope you can find a combo that works for Jonah. God bless.