Oct
14
    
Posted (Tina) in All Posts on October-14-2009


Ella has been doing well since our last update.

We’ve been able to increase the density of her food to 30 k/cal. We tried 28 k/cal for 6 days without issue, so we increased to 30 k/cal. We’ve been on this new diet for about 6 days now too and so far, so good. It’s nice for me because it means that I feed Ella only 5 times per day versus 6 times per day, as of recent. It also helps because her food volume has been decreased to 1170ccs. Less fluid is never a bad deal for this girl.

Also, this past weekend we hit another huge milestone. I noted that Ella was laying down in her Pack-n-Play watching a video. I walked into the kitchen, but when I came back out, Ella was sitting up!!! I did a double-take: wait, I didn’t put her in that position! Even over the last few days, it has been happening more and more.

Just this past week, her interest in becoming mobile has heightened significantly. I will try and take her out of the Pack-n-Play to give her exercise and play on the carpet. But more times than not, she doesn’t seem as interested. The Pack-n-Play is such a safety zone for her. So, she has started to roll over onto, sit up on her own, lean forward to get on her hands and knees. All of this without my prompting, which is the best. She gets herself into all kinds of positions in the Pack-n-Play, exercising a lot each day. She’s coming over to the edge. She used to sit there, make some noise to get my attention and hold her hands out, so I can help her stand up and hold the side of the Pack-n-Play. The past few days: she’s already over to the edge on her knees, holding the top of the Pack-n-Play with her hands. Then, she gets my attention because she still doesn’t know how to stand on her own. The PT advised to grab her by the ribcage and tilt her one direction. Sure enough, the instinct is for her to place one foot flat and then I help lift her. All I can say is that all of this is very good and a huge milestone for Ella. She has turned a huge corner and is continuing to build strength each day.

We ran out of Flovent about five days ago. This is an inhaled steroid that Ella has used for about a year now. The pulmonologist prescribed it to her when she had a chronic cough. We later learned that the chronic cough was a side effect of Captopril. At recent check-ups, the pulmonologist has stated that it is not a bad thing for her to take, but was not convinced that she needed this medicine. I guess we just wonder how much it is doing for her. We’ve run into trouble with this before, like when we thought that Reglan might not be doing much. But here we are again, wondering if Flovent is really having an impact. So, we are going to try some time without to see if there are any adverse side effects. She is still on so many medications every day that we always want to try and eliminate, if at all possible.

With the latest SVC procedure behind us, Ella is also more tolerant of her therapies. Below are some pictures of a recent OT session.





And on an ending note, some more cute photos of the Bun playing on the floor with her computer!











monika clark on October 14th, 2009 at 8:52 pm #

how wonderfully ella is growing, so bright. GOD BLESS YOU ALL

The Laz Fam on October 14th, 2009 at 11:17 pm #

great pics! she’s growing so beautifully!

julie kirk on October 15th, 2009 at 12:52 am #

Josh and Tina, This is so huge and such wonderful WONDERFUL news!!!!!!!
(((HUGS))) God Bless that precious little bundle. Looks like things are really smoothing out. Will be praying that she can do w/o the Flovent. I am just so happy to see this email this am (for us)…thanks for always taking time to keep us posted. love to you family:)

julie kirk on October 15th, 2009 at 12:54 am #

just had to add: Ella looks like “Shirley Temple”…those curls are so sweet.

Laura Leichty on October 15th, 2009 at 4:58 am #

Shes making great strides!!!! 🙂 I’m so thrilled for you!! She will be all over your house before you know it! What a little sweetie! You guys are awesome parents! Still praying!!

Loren Lizotte on October 15th, 2009 at 5:55 am #

I just love her! She is precious. She looks sooo much like Josh it’s a hoot. I had no idea Josh had so many beautiful features!!! And those curls are super hot

Marge (A Friend in Indiana) on October 15th, 2009 at 5:59 am #

So good to see Ella and know that she is doing so well; keep up the good work! May the three of you know many more of God’s wonderful blessings.

Steve and Joan on October 15th, 2009 at 6:19 am #

Incredibly awesome great news!!! She gets it and does it in her own time!!! We are so excited and happy for her and the two of you. Prayers continue for the three of you and for success on the job front for Josh. Hugs and blessings – Steve and Joan

Tracy on October 15th, 2009 at 7:13 am #

Praise GOD!! Ella is such a beautiful little girl ~ thanks for all the pics!
Love The Mitchells

Kara on October 15th, 2009 at 7:15 am #

Hugs and kisses to all of you!

Kellie on October 15th, 2009 at 7:55 am #

Wow! What a great accomplishment. Way to go Ella!!!! I’m so happy to hear that she is doing well and you’ve been able to cut down on the feeds per day. I know what a stressor that can be. Keep up the great work 🙂
-Kellie, Carter’s mom

Jennifer Harris on October 15th, 2009 at 8:42 am #

Thank you for sharing this great news about Ella’s progress and her gorgeous photos. What a blessing and HE will continue to provide!

Jennifer

Grandma on October 15th, 2009 at 9:58 am #

Wow !!!!! Ella I am so excited moving forward very slowly but still moving forward . I bet you will be crawling by Christmas Hope to see you soon Love you all bunches Grandma West

Jim and Char Jordan on October 15th, 2009 at 9:59 am #

We are on pins and needles waiting for another milestone. You are doing great. Love, Aunt Char and Jim

Eve Johnson on October 15th, 2009 at 11:44 am #

Grow kiddo, grow! Her milestones are so exciting!

Jill E G on October 15th, 2009 at 1:06 pm #

Wonderful progress Miss Ella! I’m so happy for you guys too. It is so nice to get see these milestones. Wishing you more good luck that things continue to go well for the Wests.

megan on October 15th, 2009 at 3:51 pm #

Hi Doodlebug! I am super excited that you are making such awesome steps! I miss you and mommy and daddy bunches! The pics still don’t do you justice pumpkin.. Take care and lots of love, hugs and kisses…

Jenn M on October 16th, 2009 at 6:17 am #

She looks so GREAT! I just want to squeeze her!!! Yay for the new milestones and cheers to more coming!

Williamsburg on October 16th, 2009 at 10:26 am #

Awesome pics, awesome progress – what a demonstration of the faithfulness of our God. Thanks for sharing these. XOXOXO

Joel snyder on March 7th, 2010 at 12:20 pm #

What great news Ella. I am so impressed with your progress!!!! One small step at a time. Love Ya, Grandpa!!!

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