Thursday, December 3, 2009

sam's site and target

A couple of you have asked me about how Sam's doing after watching her on Truth Be Told on Discovery Health last night. Here is the link to her Caring Bridge for those of you who asked. I hate that I didn't post that the episode was airing (it is conclusive - Jonah has decided he hates napping. Period.), but I didn't really have a chance to blog yesterday. Sam is struggling right now with 20 to 50 new blisters a day, has just had surgery, and is waiting on some culture results on a couple questionable spots that are showing signs of infection. Her mom, Mary Beth, is great at giving updates (usually daily), not only on how things are going physically, but how Sam is holding up emotionally and also includes a lot of medical info for all us EB families (and for those of you out there who care just because... thank you!). I'm keeping my eye out for the episode to go online (I don't know if there are plans to do that), and I'll let you know if they post online or reshow the episode.

Jonah only ate nineteen ounces yesterday. Partly this was due to the lost feeding overnight and partly to the fact that I could not get him to take ONE DROP at his before bed feeding. (I hope it's only his lip that is causing our new struggles and not the beginning of another downhill turn.)We set our clocks and woke him up to eat last night around 4am. I didn't want to do that, but he hadn't eaten since 3pm the day before, and I knew he wouldn't be tired enough for another bottle until 9am this morning. It was definitely a forced feeding, and he only took three and a half ounces. He was awake for an hour and fifteen minutes, and it was really hard to get him settled down again. I don't think we'll be waking him up tonight. If he decides to sleep through, I'd like to give it a week or so to see if he starts compensating during the day. He needs the sleep. We need the sleep. If he chooses, we'd like to let him sleep. (Note: I'm pretty sure this will probably be a moot point considering, as we've previously discussed, Jonah thinks sleep is for suckas.)

We've had a good day today, although Jonah is a little fussier than usual. After his morning bottle, he and I went to Target, JUST THE TWO OF US. Maybe you don't think that warrants all capital letters, but considering this is only the second time (the only other time was back in June) I've EVER taken him out by myself in his whole nine months, I feel like it was a pretty big deal. Now that he's slowing down on the gushers and is eating better, I feel like we are on the brink of some normalcy. Thank God! Anyway, since his pediatrician said I can't turn his car seat around any time soon (not enough spine/back control), I bought the biggest, most easily secured mirror I could find, got Matt to install it and off we went. And I can see Jonah so much better now than I could(n't) with our Eddie Bauer mirror. Jonah I can see. Cars behind me, not so much. Our trip was a 100% success. No gushing or even spitting up. No crying. It was a nice, leisurely, much needed outing, just the two of us. He had a blast, and I was even able to do two laps around. The only reason we headed back was that it was time for another feeding. Jonah would have been content to be there for another hour I think. It was such a pretty day here today. I was so happy to get out. AND I dried my hair, put on make-up, and wore a sweater with a decorative scarf (WHAT???). I just don't know who I am anymore. Decorative scarf? Do I even know how to tie those? (Answer: not really) Shaina got all the fashion genes in our family.

Anyway, I'm so thankful for how stable things are right now. I know these moments may only be temporary, but I'm thankful just the same. My sweet boy is growing (another eight ounces this last week), happy, still infection free, and likes Target. All is well. His lip is still about the same, but I know The Healing is coming very soon.

Thank you so much for praying for Jonah and Tripp and Leah and Sam and all the other EB sweeties out there. I just love these kids. My heroes!


Bess said...

Hey Patrice:

SO glad you had a great outing today. Target is good medicine! Praying for Jonah's lip and eating.

Unknown said...

Glad you got out with your little man. I will pray for healing and eating!

Laura A said...

Hi Patrice-

I stayed up late and watched the second run of Sam's show. It was a real eye-opener, let me tell you! I thought I had a semi-understanding of the things you and Matt go through with Jonah, but when Marybeth opened the cabinet and showed ALL the supplies she uses for Sam, that put things in a whole new light.

As always, my prayers are with you! (..and Sam, and Tripp, and Leah, etc!!)

Love from TX,

PS - I'm heading to Target this PM too (for the second time in as many days). Because you just can't have too much Target!!

Anonymous said...

So very happy to hear you had a wonderful time. Praying that his lip heals and he continues to grow!

Jessica said...

what a great day! I laughed several times reading your blog today!! :) praying for many more days like today for you guys!

Angela said...

Continuing to pray for healing of Jonah's lip boo-boo. I hope his eating improves and that you get to enjoy many more outings with him.

And I have to say that your pediatrician is one smart guy instructing you not to turn that precious little Jonut forward-facing just yet. Car seat safety is a passion of mine since I have a friend who lost her sweet 3yo in an accident. Here's some more info as to why rear-facing is safer as well as a link to the Foundation established in honor of that sweet 3yo. You know...if you ever time to peruse the web. I'm sure sleeping rates higher on your priority list at the moment =)

Blessings =)

Lauren said...

Hey Parice. That show is airing again at midnight tonight. I am still praying for Jonah every day.

Brandie said...

I'd love to hear if the episode with Sam is available on the internet, so please let us know! What an amazing feeling that had to be to get out JUST THE TWO OF YOU, and have it be such a success!! I still rarely get 'ready' when leaving the house, so good job! It definitely makes ya walk with a little hop in your step ;) or for me anyway!

So happy Jonah is doing pretty fantastic overall :)

jenlar3 said...

Waiting to see the pic of you in your sweater and scarf! Yeah for no gushers and big mirrors! Don't worry about seeing the cars behind you, if you drive erratically enough, they will all be watching you!!

I couldn't find the show with Sam in it, so would appreciate a heads up if you find it on line. Thanks!

Penny said...

When my daughter was being treated for scoliosis, the doctor told me that kids do most of their growing at night during their sleep! Maybe that's what Jonah needs--- lots of nighttime sleep. It's hard to sleep in the daytime and, from what you write about him, I suspect he's afraid he'll miss some action--- or a trip to Target. LOL
SO GLAD he's gaining! =)

Maryellen said...

I watched the show and learned even more about you amazing parents and courageous children. Sounds like Jonah is going to be a shopper ? LOL So glad you had a wonderful time just the two of you. You both deserve it . . .

Linda said...

Hi Patrice;
So glad you two had a chance to get out and do some shopping. Still praying for the lip and the eating to get better.
I watched the special and now I feel even closer to Marybeth and Samantha. What a family!! All EB families are so special. They go through so much every single day. God Bless all the EB families. Take care and give Jonah a hug for me. Love Leah's Nana