Posted (Tina) in All Posts on June-9-2008

This is where Ella spent most of the day.

I had 2 doctor appointments for myself, since we have not been home in nearly a year. So, I trained Grandma on how to hold her, use all the good toys to distract, increase oxygen when needed and it worked. My mom followed me to both appointments. Since I was a new patient, the appointments lasted 2 hours each.

For the second appointment, the doctor office was so close to the house that we walked! Ella was stylin’ in her hat and shades!

Needless to say, Grandma is a bit sore this evening from holding the Bun for so long. But the moments where she decided to calm down and get some beauty sleep…those were some precious moments for Grandma.

We have two appointments tomorrow: one for me and one for Ella. So, it will be another busy day. We’re already looking forward to Wednesday when there are no appointments scheduled.

I must take the time to mention: LoriAnn Kuhn mentioned placing Ella rear-facing but in the front seat. Pure genius! I know it is not the most safe, but we tried it for the first time on Sunday during leisure time and today for the doctor appointments. It works well…so much better than the back seat. She is so much calmer because she can see me. And lately, we had Daddy or Grandma riding in the back seat, so she could watch them too!

When she pulls out her binky or her cannulas, I can easily stick them back in to make her happy. When she begins to have a meltdown, the oxygen tank is easily within reach. And if I need to stop and pull over, at least I can comfort her without having to get out of my seat. That is much safer than pulling over and hanging out the back seat. So, I never thought of placing her in the front seat, but with the auto detect for disabling the airbag, it makes things way easier. I feel so much better about the idea of driving with Ella now.

Ella will be evaluated tomorrow as part of the Early Intervention program, which is a federal and state funded program. Depending on their evaluation, they will decide how much OT and PT Ella will need to overcome her setbacks. The good part is that this program is free and separate from insurance. We have not been able to locate a private OT or PT to come to our home, so we’re hoping that maybe we can find good therapists for Ella through this free program.

One last prayer request: we were unable to sell our home last year due to market conditions, but needed to downsize since we knew Ella was coming. We downsized into a townhome and just three days before we left for Florida, the house rented to a wonderful family.

As of last weekend, our amazing renters moved out of our house and moved back to Seattle. So now we need to search for new renters. Being on one income makes this even more of a necessity! Please pray that the right person/family is guided to our house. We were so blessed this past year to have renters that not only took care of our house, but loved our baby girl virtually.

Thanks for all the continued support and prayers, even since we have returned home to Denver.

Jim and Char Jordan on June 9th, 2008 at 10:24 pm #

She is so cute. Mary, what a delight to see you with your grandbaby. I know you will hate to leave. Great idea about the car seat. I thought of that too, but thought you may have laws in Colorado that prevent front seat baby passengers. That is what I did when I was alone with Marc and he was so tiny. Great to know things are going as expected. LOL JIm and Char

Kitty on June 10th, 2008 at 5:36 am #

I just wanted to let you know that your story has helped to give me hope and that your Ella is precious! I was recently told my baby has CDH and finding information on the web has not been very helpful or encouraging.
I was wondering if I could e-mail you?
Thanks and God Bless!

Matt, Abby Austin & Caed on June 10th, 2008 at 5:54 am #

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.
Isaiah 42:16

God knows you have a lot to do and a lot of information to gather and sift through. Everything is in His hands. We continue to pray for you three.

Steve and Joan Odell on June 10th, 2008 at 6:21 am #

Your journey has been full of many decisions and issues that a lot of people never experience. Both of you have come through with grace, dignity and a deepened faith in our God. You have certainly made ‘this little light of mine, I’m going to make it shine’ a daily way of life. You have enriched each of us who have walked with you and Ella by following where the Lord led you. Thank you for being the two of you and a blessing to each of us. The three of you are so important to us – Prayers continue and hugs – Steve and Joan

Joel Snyder on June 10th, 2008 at 8:28 am #

Ella, Nice job following Mom around with Grandma. May I say that you are so stylish with your shades. Grandma you look great with the “BUN” and hope you have a great day today. Tina so glad to hear that you are getting some of the answers with the driving and other care issues. Hope the appointnment and evaluation on the OT and PT go well. I am thinking positive thoughts about the house and believe that will work out. I will catch up with you later. Love,Grandpa!!!!!!!!!!!!!!!!


The Kuhn Family on June 10th, 2008 at 8:29 am #

I am so glad that my suggestion helped. I might also add, if I didn’t before, that you might get a doctor’s “note” if you are pulled over. I am glad that you can disable your airbag so easily! I kept Tyler in the front for while, since he was tube-feed through a nose-tube for two weeks. We have a Suburban that is made WAY before airbags, so we had no problem with that. It is an ’88, so it is made of pure, heavy steel. lol Now… did you think we were all going to stop peeking in on your lives just become you got home? lol I am just NOT looking forward to not having my daily dose of your family and your inspiration. If the person that wanted you e-mail starts her own site, let me know! I can follow their journey too. LOL God is good. I think that is one reason I love reading your posts: inspiration for all. LoriAnn & The Boys

Brown Family on June 10th, 2008 at 9:06 am #

My son was part of ECI (Early Childhood Intervention) We had speech therapist who came right to our home for free. The best part though was they paid for him to go to Little Gym weekly and reimbursed us for 20 hours of babysitting a month (To help give parents a break). Make sure to ask about those programs as they don’t always advertise those benefits. The other great benefit is when he turned three he got on the fast track to get an IEP (Individualized Education Plan) with the district. That can be difficult to qualify for but since he was transfered from ECI it began immediately when he turned three and now he goes to the elementary school for therapy even though he is to young to start school yet. I think you will be happy with the program. It was a great support for us.

Julie Brantley on June 10th, 2008 at 6:11 pm #

We are so happy to see how well Ella is doing and how big she is getting. We are so glad to see you all home safe and sound and back in your own environment. I can’t believe Josh didn’t want to stay in Florida for another cool summer. J/K We may not write much but the whole family and more are keeping up with Ella. We love you guys!

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