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Coming up on One Year

08 Feb

It is hard to believe that a year has gone by. Tomorrow is the official anniversary of Rebecca’s Wild Adventure but actually, she started turning blue the night before… one year ago tonight. What a year it has been. We are so thankful to God for allowing her to stay in our family.

This was the song that was playing in Rebecca’s PICU room the first morning when we went to see her. It was very fitting.

Praise You In This Storm

By Casting Crowns

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say “Amen”, and it’s still raining

 

As the thunder rolls

I barely hear Your whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

[Chorus:]

And I’ll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I’ve cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when

I stumbled in the wind

You heard my cry to you

And you raised me up again

My strength is almost gone

How can I carry on

If I can’t find You

 

But as the thunder rolls

I barely hear You whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

[Chorus]

 

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

[Chorus x2]

 
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Posted by in 2011 Rebecca's Wild Adventure, Family, Illness / Injury, Kids, Recovery

 

Surgery is scheduled

20 May
I can’t believe it has been a month since I posted last. So much has happened but the biggest news for Rebecca is that she is scheduled for surgery on June 22nd,
When they ran tests while we were at the hospital, they did not find any kind of reflux in here kidney or major blockage. They felt that the amount of fluid an time it took for her kidney to drain was due to either a kink in or a narrow tube from the kidney to the bladder. If it was a kink, it would fix itself with time. If it was a narrow tube, surgery would fix the problem.
At her last ultrasound/specialist follow up, the fluid in her kidneys continues to be there, and it has actually gotten worse. Because of this, they feel it is a narrow tube and have scheduled surgery to remove the narrow portion and reattach the normal size tube. She will go into the hospital for surgery on June 22nd at 8:30 am. Recovery time in the hospital is estimated 2-3 days and our return on the 25th.
I will update my posts when I can.
Another thing is trying to get her walking since before the hospital, she was not crawling properly…she is now pulling her self up to stand assisted. However, her feet are still curling under and her left leg is still really weak. They are addressing it with exercises and looking at other options to come.
She is finally gaining weight though and her last weigh in was 19 lbs, 5.5 oz. This is great progress. God is so good!
Thank you for your continued prayers.
Jamie
 
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Posted by in 2011 Rebecca's Wild Adventure, Kids, Prayer Requests, Recovery

 

Rebecca is standing

18 Apr

I wanted to let everyone know that Rebecca pulled herself up to stand several times on Saturday evening and just did it again. This is great progress for her. YAY!

 
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Posted by in 2011 Rebecca's Wild Adventure, Illness / Injury, Kids, Prayer Requests, Recovery

 

Rebecca’s update

16 Mar

This week has been a long week, and it is only half over.

Actually, last week we met with someone from the Benton-Franklin 0-3 year program to talk about Rebecca. She asked questions about Rebecca and I answered them. When we were done, she added up all the numbers and Rebecca was in the grey for one category and behind in the rest. She was going to take the information with her and discuss the results in a meeting. Got a call from her today saying that with Rebecca’s scores, she is in for in-home therapy of sorts. (I am typing this upstairs right now while putting the kids to bed and do not have my notes so some info (names of program,etc) might be a little off). Anyways, it is in the works for that.

Also last Friday, Rebecca had an ultrasound and met with the urologist, Dr. Starr. The fluid in her kidneys is getting better so when the doctor comes back in May, we will repeat the ultrasound and see her again. We may need to do another Mag3 test up in Spokane in 3 months to see how long it takes her kidneys/bladder to drain but we will see in May.

Back to this week. Yesterday we only had OT. (our PT was out sick) Rebecca did great. Using more of her muscles and didn’t fuss as much being moved here and there. The OT was happy with her progress.

Today we met for Speech. Rebecca played with the toys and Katie (ST) finished her evaluation. She has pleased with Rebecca’s progress as well and really liked that she was babbling a lot more.

I bought Rebecca an electric toothbrush as they recommended and it has been funny to watch her. She does not like it by her face but today she let it move against her tongue. Her expression was classic and she tried to wipe her tongue off (on my hand) afterwards. 🙂

Tomorrow we meet with the dietician for the first time. She will be coming to the house. Not quite sure what to expect there other than to go over her feedings and see if she needs to increase her calories even more.

As I’ve mentioned before, THANK YOU so much for your continued prayers. They are so appreciated! We did get our thank you cards in and aim working to get them out.

More updates to come.
Jamie

 
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Posted by in 2011 Rebecca's Wild Adventure, Illness / Injury, Kids, Prayer Requests, Recovery

 

Appointments continue…

11 Mar

Before I forget another time…Rebecca cut 2 more top teeth 2 days ago. 🙂

It has been very busy around here these days. Many appointments. Rebecca’s therapy is going well. She just started speech and they are still working on her assessment. We are making progress though.

She has begun to fully crawl now. In fact she is getting rather fast. We are working to get her to pull herself up to a standing position. Her feet curl in though so we are trying to work with the muscles so when she stands, her feet go flat. Drinking from a cup is another thing we have worked on.

At yesterdays well-child appointment, she was 17 pounds (which was a 9 ounce gain) YAY!

Today she had her kidney/bladder ultrasound and directly afterwards, we saw the urologist. Her hydronephrosis (sp?) is still there but has gotten better. We will do another ultrasound and appointment when the specialist is down again in May and in about 3 months we will probably repeat the MAG3 test to determine how fast her bladder dispells fluid.

Thank you for all your prayers!

Jamie

 
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Posted by in 2011 Rebecca's Wild Adventure, Illness / Injury, Kids, Prayer Requests, Recovery

 

Amazing Progress

07 Mar

Our goal is to get Rebecca’s intake up to 32 ounces per day, feeding her 4-6 ounces every 3-4 hours. Three of her feedings have to include table food where we start with soft/purees/ground food then add crunchier/breadier/solids and finishing with a bottle.

Well, today was a good day for her. A few of her meals today included:

at bible study this morning, she had 6 ounces; at lunchtime she ate a full container of stage 2 gerber food, apples and cherries, along with 1/2 a graham cracker sheet and 7 ounces; she had another 6 ounces for Grandma while I took Kimberly to the doctor; for dinner, she ate beef noodles, olives, applesauce, 4 ounces; and at bedtime she had another 6 ounces (that is 29 ounces)

This is amazing! When we left the hospital, she was having a difficult time taking in 12 ounces in a day. If she hasn’t gained more weight this week, I will be amazed.

She has made such remarkable progress. We have more therapy tomorrow. We meet our speech therapist and continue with PT and OT. I will continue to update everyone on her progress.

Thank you all for your prayers.

Jamie

 
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Posted by in 2011 Rebecca's Wild Adventure, Illness / Injury, Kids, Prayer Requests, Recovery

 

Therapy continues

03 Mar

Rebecca will have Physical Therapy (PT), Speech, and Occupational Therapy (OT) as well as see a dietitian and follow up with the urologist. At this point, she will be seeing each of the PT, Speech, and OT once a week.

So far we have had a couple PT appointments and the therapist, Megan, is a real sweetie. Rebecca seems to be really like her and she is making progress. Megan noticed yesterday that Rebecca’s feet face each other/inwards so we will be working to get her muscles into gear.

We met with our OT, Rae, today for the first time. She was wonderful and I am excited to have her work with Rebecca. She gave several things I could work with Rebecca with at home and she was very inspiring.

Both of them mentioned that Rebecca has low/weak muscle tone in her back and legs which is what they are going to work to strengthen.

Next week we will meet our Speech therapist. The nice thing about having them all at the same place is that they are going to be able to make our appointments back to back on the same day so I don’t have to bring her in several times throughout each week.

The level of care we have received through this entire process has been amazing. We have really been able to see God’s hand in the whole process. So many of the providers we have come across are Christian and are praying for Rebecca as well. It is such a relief and very encouraging.

Thank you all for your continued prayers! I will continue to keep everyone updated.

Jamie

 
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Posted by in Illness / Injury, Kids, Prayer Requests, Recovery