Jun
26
    
Posted (Tina) in All Posts on June-26-2008


Today was a rough day for me, for some reason. It was the same routine of sitting at home with Ella, but the weight of everything was hitting me.

Please pray for all of us. Pray for Josh in his work situation, that he can stay focused and energized for his role. For me, that I will find peace and sanity in my solo role at home. And pray for Ella: that she will gain weight, get stronger and make progress with her physical and developmental challenges.

As soon as Josh got home and we ate dinner, the Bun decided that she wanted to go down for a nap. This is not that strange considering that she did not nap much today.

A little bit later, we decided to try and wake her up for the rest of the night…and she rebelled. So, we let her continue to rest while we enjoyed the sun setting off the front patio.

She sure enjoys her beauty sleep…



The Laz Fam on June 26th, 2008 at 9:36 pm #

prayers… stay strong. some days are going to be harder than others, but your amazing faith will carry you through. praise Him.
love you all ~ KTJB

Melissa on June 26th, 2008 at 10:11 pm #

Hello, I found your blog from another CDH baby I know. Wow, I read through your entire story, it is really amazing. I love how you continue to have great faith through all your struggles. Ella is so beautiful and so happy all the time! Hang in there, I know some days at home are rough, I can not imagine how rough it must be in your situation. I will pray for your family. Feel free to email me if you want to “talk”. I stay home with my 3 yr old and 1 yr old (with no med or dev’l issues) and some days can be very trying!

LoriAnn & The Boys on June 27th, 2008 at 6:20 am #

Thank you so much for updating us on the site; I thought you were trying to wean us already! lol The boys are getting ready to draw some pictures to send with our letter. I also wanted to add some pictures (the kind from cameras lol) of us, if y’all wanted those too. We just received our new video camera that takes stills, also. Of course, I didn’t read on the site that I ordered from that I needed a different “card” than other cameras, so I have to hope that our WalMart has them. We only have a Super WalMart, Safeway and a Super 1 here, along with a few shops downtown, which is about a mile long! I remember those exausting days of a new baby and I am sure that it feels like you have a “new” one all the time. I can hardly wait to read one day that Ella is walking, running, talking and being an active toddler, as I am sure you are, too. Love from the Kuhn Family: LoriAnn, Tom, Tyler, Zackary, Seth and Jonny. btw, I hope you have realized that I have four eligible batcherlors! I am sure that my sister would love for one of her nephews to live by her. LOL

Michelle on June 27th, 2008 at 6:40 am #

Hey guys, hang in there! If there is any couple I’ve met that can handle the responsibility and pleasure of Ella, it’s you two. This too will pass and I feel confident that she’ll catch up developmentally and physically. Just wait and see…one day you’ll back and think to yourself, “Geeze, I wish Ella was still the sweet little girl laughing in her crib instead of this crazy toddler destroying my house!” 🙂 I miss the three of you and I hope you all have a wonderful weekend.

Jill E G on June 27th, 2008 at 8:49 am #

Hi! I found your blog looking for CDH kids. I have 7mo old CDH ECMO Miracle. I also stay at home with him now. Please feel free to email or read his website. http://www.caringbridge.org/visit/gusginder

You guys sound like such great parents. I know how there can be tough days. The best thing I think is to keeping talking about your feelings and reach out to others CDH people since they really know where you’ve been and where you are coming from.

I’ll give Ella some grow and healthy prayers for you too.

Hang in there guys!

Chambers Family on June 27th, 2008 at 10:44 am #

I hope Josh can let you escape when he gets home from work or even go to a movie at night after she goes to bed. I used to feel so guilty that I wanted a break. But it is so healthy and I didn’t have a CDH baby! You guys are such a great team – we are cheering you on here in Dallas!

Joel Snyder on June 27th, 2008 at 1:25 pm #

Ella, I am glad to see you getting your beauty rest. Tina and Josh I am praying that things will get better for you and not so hum drum. I will check on you later. Have a good weekend. Love,Grandpa!!!!!!!!!!!!!

Kristen on June 27th, 2008 at 1:32 pm #

Prayers for you Tina. Being a mama is the hardest thing you’ll ever do. . . if you ask me. . . we grow right alongside our children. . . and the growing pains are rough. Keep your eyes heavenwards!

Raewyn on June 29th, 2008 at 8:05 am #

My heart goes out to you Tina. I had a difficult child a few years ago which meant trips out of the house were too difficult. It felt like I was a prisoner in my own home and being so far from family I had no-one to take over. This is only a small drop in the ocean compared with what you are going thru and I look back at those days as being some of the hardest I have had. I would go out at 10pm at night and just walk around walmart not buying anything but just to get out of the house. 24 hr walgreens and cvs works just as good if you are in need of some zoning out time. Just leave the cards at home otherwise it can be an expensive form of therapy.

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