Tuesday, March 2, 2010

jonah update

This will be short because I am super tired and I'm determined to be in bed by 10 tonight. I promise I'll do a birthday party post (or several) soon, but I'm sorting through and editing four different sets of photos (with my professional ones my friend Jenn did still to come), and it's taking a LONG time. So please bear with me. It was a GREAT party and it will certainly get it's bloggy due. :)

We took Jonah for his one year check-up yesterday. He had to get four shots and a big thing of blood drawn out of his arm. He cried but recovered quickly. Sweet Boy. He's all smiles until the nurse shows up with those needles. I think he's starting to learn. Jonah's growth looks great. He's between the 25th and 50th % for weight (hard to get an exact weight with all those bandages) and the 60th % for height and head circumference. He continues to remain right on his curve. It really is AMAZING that he is growing as well as he without a g-tube. That is certainly the JEB exception.

Two things are on my mind heavily tonight, and I ask that you remember them in your prayers for Jonah.

- I have suspected that Jonah's toes are beginning to web for the last several weeks, and Dr. B confirmed it yesterday. His second and third toes on both feet are beginning to web together (the left foot is a lot worse) and they are also beginning to web to the bottom of his foot. Because there is not much space left to wrap him to where we can put something between his toes and the bottom of his foot, we've sort of been forced into leaving his toes unwrapped. I'm definitely nervous about it, but he only got one big blister and one small one today. I am pleased with that. Toe and feet blisters are extremely hard to drain because Jonah is very ticklish and just annoyed in general with somebody messing with his feet. I'm not excited by the idea of having lots of blisters there - for Jonah or myself. Please pray for protection of his feet and that his webbing is not irreparable. If nothing else, please pray that us leaving them unwrapped will prevent further damage. (Cute little Jonah toes can be seen
here.)

- Jonah is still on a bottle and showing no interest in a cup. He does not hold his own bottle or feed himself. Therefore, when you give him a cup, he doesn't really know what to do with it. He can get it to his lips, but if he puts it to his mouth at all, it's just to chew the tip. (I have tried a soft tip transition cup and a straw cup... he has no idea what to do with a straw.) He will have to be on some sort of formula or liquid nutrition until he's two (at least), but I would love to be able to make the move to a cup in the next few months - one, because I already worry about his teeth and don't love the idea of prolonged bottle feedings, two, because I think he would like it more, three, because I think he would open up more to solids if the liquid was a complement to the meal and not the meal itself, and four because it is a struggle to feed him, takes many hours out of our day, and I want my life back. Just tryin' to keep it real.

Anyway, those two things (especially the feet thing) are our current EB related issues (besides the obvious always ones, of course), and we would appreciate any praying you could send our way.

We have a dermatologist appointment and Jonah's first dentist appointment scheduled for April 15th. I would have liked them earlier but I had to schedule them when I could get them both on the same day since they are both in Chapel Hill. I'll be emailing Jonah's dermatologist about the feet issues, but we won't be seen until April. I don't know if we'll be referred to a plastic surgeon or what they will decide. I don't even want to think about what all that will mean.

We'll just take it one day at a time.

28 comments:

Janel said...

Oh honey! I am so sorry about his feet. Hopefully not wrapping them will help. You know you have my prayers (and my phone numbers if you need to talk - any time!)

Love you!
Janel

tomandcheryl said...

I think it's smart of you to want Jonah to drink from a cup to complement his meal. But i do know so many parents that have struggled with the transition to a cup. It's just hard for kids. Goodluck. And sorry about his toes. I'll be thinking about him constantaly.
~Cheryl

Tricia said...

I am sorry to hear about his toes. I will pray that it will heal and not get worse. You have so many more things to learn and consider than the average parent of a baby. You are doing great. I will keep praying for you, too. May God pour His blessings upon you and wrap you in His peace and bless you with sweet sleep tonight.

Angela, Tim and Makenzie said...

Patrice,

Would this bottle help you in any way? It is hands free for you, but still has a nipple for him since he hasn't figured out cups or straws just yet....

http://www.toysrus.com/product/index.jsp?productId=3393781

Angela, Tim and Makenzie said...

Sorry....here is an actual link.

Podee BPA Free 2Pk Hands Free Bottle - 8 oz. - Podee Inc. - Babies "R" Us

Libby said...

Jonah's toes are just adorable, and we will pray for his feet to develop as they should.

It took awhile for N. to drink from a cup--and he still needs sippy cups to drink by himself (he's 22 mo.) because he tends to tilt an open cup too far. He only "got" a straw in the last month or two, and it was really like a lightbulb went on--nothing we could teach.

We'll also pray that the cup adventures go well!

the*4*of*us said...

prayg for you guys. I understand about the bottle worries. Keep trying and he'll get it. Do you keep the spill plugs out of the cups? My kids liked to chew on the at first, and after a while they got the idea.
((hugs))

April S. said...

I know you don't post looking for 'answers' from everyone, but I had a friend tell me something a few months ago that i didn't know...the Avent bottle tops will fit onto the Nuby sippy cups.

To get my son (who is 14 months) to transition to the bottle, I just put his bottle top on the Nuby cup so he could get used to holding the cup and I would also put the Nuby top on his Avent bottle. Hopefully that makes sense. Anyway, it worked in making the transition smoother.

I will definitely keep Jonah and your family in my prayers. You are an amazing mother and Jonah is doing great!

There She Sews! said...

I will be praying for those things for you.
And just so you know, Miles is 14 months old and because of his SEVERE allergies and GI issues he is still on 98% breast milk with very little solids. He is still using a bottle. He will use a sippy cup but not very well.
I guess what I'm trying to convey is that Jonah is very normal.
It'll come..

RLR said...

Those are some *cute* piggies! Been thinking about you all quite a bit lately - will keep you in our prayers, too!

The Goodman Family said...

Hats off to you for taking him to the dentist! I work in pediatric dentistry & parent's don't understand the importance of taking little ones to the dentist at such an early age! Hope that he has a positive experience!!

Carie Hatmaker said...

While it may be unorthodox, and I'm sure I will get criticized for doing this with my son,Jax, much less suggesting someone else do it, I will risk it anyway. We taught Jax to drink from a straw by giving him little sips of sweet tea. (Enter terrible mother comments here.) We would take the straw from our cup, put our finger over the top forming a vacuum and then put the other end into his mouth and take our finger off releasing the tea. He loved it! As he became more aware of associating the straw with something yummy that he wanted, we would not take our finger off so that he learned to suck on the straw in order to get the tea. If Jonah doesn't have any reason to not have sweet tea or something else reasonably yummy, it might be worth a shot. Jax actually drank out of a straw before he could drink out of a sippy cup. Good Luck!
Carie

Aaron, Lacey, and Audrey said...

Have you tried Born Free sippy cups? Baby's R Us sells them. My baby girl had the hardest time switching from bottle to sippy and I tried every kind of cup I could find! Finally I tried the Born Free cup and they are still her favorite.

Oh and by the way, Jonah's little toes are just adorable!

Laura A said...

Hi Patrice-

I'll pray for Jonah's sweet toes to be protected, and for no further damage.

This is going to sound really stupid, but if you get a good straw cup (there are some sippy/straw cups with wider straws), get it to his mouth and then blow in his face, this should (in theory) get him to inhale enough to get the liquid moving through the straw. It worked with a couple of my kids - and once they realized there was something in the straw, they started sucking on their own. Just a thought!

...and I think Carie's idea is good too - put something yummy like your sweet tea in there!!

Lots of love from TX!
Laura

Courtney Roth said...

OH Momma.. I'm so sorry. I think you're totally on the right track with leaving them unwrapped. I think it will help! Well, I'll pray it will help!! Everyday is something new.... I feel for you, my dear. I love you so much and pray for you guys every night.
PLEASE call me whenever you need to vent. :)
All my love,
Courtney

John and Crystal Pinegar Family said...

Others have commented on how to introduce the straw so I won't. But to get them interested in the sippy cup I dilute juice and help them drink it. Best to start with a starter sippy cup, they don't have to suck it just kind of leaks out. Once they find that something sweet comes out when they tip it it does motivate them. I will pray for his feet, poor kid. I had to have blisters drained on my feet before, not fun. I had a really bad case of chicken pox when I was a kid and I got it really badly on my feet.

Carrie Mullins said...

I've never commented but am a follower/prayer of your blog. I just wanted to tell you what worked to get our 18 month old to drink out of a straw. We used a juice box that could be squeezed and we'd put the straw in her mouth. As we slowly squeezed the juice in she put her lips around the straw and started drinking. For her, drinking with a straw is much easier than a regular sippy cup. Blessings on your sweet family.

sandy said...

Remember how worried you were when you started to leave his hands unwrapped. I am certain it will be a pain for a little while, but it will work out.

Kellye said...

Those are about the cutest toes I've ever seen...but I'm a sucker for baby feet; just love love love 'em!!!

I have to echo what Carrie said about using a box drink to teach Jonah to drink from a straw...we did that with all three of our kids with great success, including our autistic son who just couldn't "get" the concept of sucking up the liquid. It worked like a charm with him.

Enjoy those Jonah toes...I'll be praying for them specifically. After all, it's not hard to pray for something so darned adorable... :)

Hugs to you, Patrice! Have a blessed day!

Kim M said...

Oh Patrice! You know we will be praying about little Jonah's feet and his eating situation! Sending a prayer of thanks as his weight gain is great news! It must be so hard, but all three of you have come so far!
Thanks for sharing your precious little one and your concerns.

Tara said...

Sending prayers your way for sweet Jonah :) He is adorable and I love to read about his progress!

Stacey said...

Praying for Jonah and for you.

1 Samuel 2:19 says, "He will keep the feet of his saints."

Also, 2 Samuel 22:33-34 says, "God is my strength and power: and he maketh my way perfect. He maketh my feet like hinds' feet: and setteth me upon my high places."

In the name of Jesus, Jonah's feet are strong, like hinds feet!

Thuy said...

Hi I am a long time reader but it's my first time leaving a comment. I had the same issue with my son, not knowing what to do with a straw or a sippy cup at that. This is what i did with my son to teach him how to sip from a straw, i took a straw and cut part of it off to a more manageable length, with one finger holding one end of a straw i dipped it in cold water. I would then put the straw in his mouth and let a little water drip out so he can taste it. I tried this for a couple of months and now he has the hang of things and drinks from a cup with a straw in it. I'm not sure if it's possible for you to use a regular straw with Jonah, maybe you can buy soft straws and try it on Jonah. I hope this helps!!

Rachelle said...

I will be praying for Jonah's "piggies." (They sure are cute) The straw trick that Carrie mentioned is exactly how we got Ashleigh to drink from a straw, but we used water. She eventually learned to suck the water out, but loved the straw trick, especially at restuarants. We got her to drink from a cup by using one without the spill valve so that the water would just come out. I don't know about you, but I tried drinking from her sippy with the valve in and found it really difficult to suck the water out. You can put the valve back in once he learns it, but you may not want him to have to suck that hard on the cup, anyway. Good luck with it, it's kind of a difficult transition.

Rikki said...

we get feeding therapy for our daughter (13 months, restrictive diet) and the therapist recommended Mr. Juice bear (http://www.beyondplay.com/ITEMS/T216.HTM). it's basically a honey container bear with a straw. you can squeeze it and the liquid kinda stays in the straw so very little sucking is needed (or none, if you just squeeze liquid into the baby's mouth). we tried it and within 2 meals our daughter was trying to suck on the straw herself. just wanted to pass it along!

mommaof4wife2r said...

oh sweet boy...i just can't imagine the toes thing. poor guy! prayers to you all.

mama2K said...

Jonah's mom:
I follow your blog periodically. Somehow I came across it when I was on maternity leave- my baby was born about a month before Jonah. When I read your post I was compelled to get on my knees (literally) and pray especially for you -- that you would find rest, strength, comfort, patience,peace....and that Jesus would hold Jonah in the palm of his hand. Many blessings to you as you care for your sweet boy-- he is a HONEY!
Lisa --

The Howard's said...

My little boy was a premature. When he was born he had to be trained to suck. So when we had to transition to a cup, it was difficult. We found success with the gerber cups that have a rubber spout. I had to remove the leak-stopper and allow some of the fluid to "fall" into his mouth. After a while he caught on. However he was about 18 months old before I could put the stopper back in, and for him to truly drink with success.

I'm praying for you and your family!