Just a note


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Just a note


The plan is still for an 11am surgery. We all are sleepy, so blessed that uncle Darrel and Aunt Rosie came to be with us today. Such a blessing that God has always sent us to hospitals where we have family near by.

More later,

Long day

Minnie had a long day at the hospital, we started out at eight AM. I think we may have met half of the staff at Scottish Rite! After the admission possess was finally over they let our girl out with a one night pass! We got back to the Ronald Mcdonald House at five PM!  She has to check back in at five AM! Her surgery is not scheduled till eleven-ish but apparently it is important to be around just in case they might have the off chance off getting you in a little early.

She is in mostly good spirits just a little nervous.  And has had a few tears, she really is amazing.

Josh is reading the bible out load to us all, all the time. Only that man would know just the right way to calm all of our hearts at one time.  He is amazing.

Ty is being ten ^o^ I say that with the most mommy love in the world.  I wish they had football for him to play here!  He has so much energy.  How do mommy’s of all boys do it?  Really we are so lucky he can run and push her in her wheelchair way longer than we can! Good news is Ronald Mcdonald House also serve’s three meals a day… this is very good news if any of you have ever seen how much this boy eats!  What a blessing!

Ty has been coughing.. we are sure it is his allergies but it is sending me right over the edge.  They are very sensitive to any kind of illness here. It would be amazing if the Lord could send an extra measure his way and take this cough from him.

I love you all and will have Joshua or myself post as soon as we can after surgery tomorrow!


Hanging out

Really I have blogged! It is just that my computer keeps eating my posts. After a few unpublished blog entry’s I am about ready to toss my computer right out the door. Instead I am choosing to exhibit self control,  I am taking a deep breath and trying this again….

I will try and share with Y’all what has gone on in the last week. Minnie continues to decline, she is sleeping a lot. We thought that she was sleeping so much due to the amount of pain she is in and the pain meds she is on. But at the appointment in Dallas we found out that she is  retaining CO2.  From  my understanding this can make you really sleepy.

The appointment in Dallas at Scottish Rite Childrens hospital; was the most productive appointments we have had. When the Doctors walked into the room, I felt like Minnie was their patient. The staff  encompassed her and our family and walked us through the next steps of this medical journey with great care and gentleness.  The feeling of the hospital was completely different.

Minnie is going to be getting her Halo traction  on the 14th of December. The Halo-gravity traction is a method that they use achieve correction, and indirectly, improve respiratory function. A halo (metal ring around the head) The surgeon will put it on Minnie. He will not have to cut her hair!! Under general anesthesia. Multiple pins attach the ring to her skull; it does not go into her brain! The halo is not painful and is well tolerated and she should get used to it quickly. Traction is applied the following day with the use of ropes, pulleys, and weights or springs that can be applied to the her bed or a wheelchair or walker

The Staff has told us that she should experience a headache for the first couple of days. Then she should start feeling better all around after that! They will take x-rays every 2 to 3 weeks. With these x-rays they will see if they are getting correction. when they stop getting correction it will be time to have her anterior and posterior fusion.

****Please remember I was trying to absorb all of this at once I could have some stuff wrong! I know again so hard to believe! ***

The Hospital has amazing things for the kids who are getting there treatments, they can go to school! They can play basketball, they have a huge play room. And of course she can cruise around the hospital and get exercise. The Surgeon’s nurse took Minnie up to meet one of the other girl’s that is in her halo so they could “hang out” next week.! Get it!

This is the big definitive procedure that I have blogged about in the past. The Surgeon’s have told us that she will be in the hospital for indefinite amount of time. We will are planning on taking life day by day. We are feeling blessed that Scottish Rite is semi close, it is about 2 and a half hours away. Josh and Ty can come up every weekend or every other.

I am sure most of you have met Kelly. For those of you who have not I will introduce her. Kelly is Minnie’s “Just Like me Doll” made specially by ME her Mommy! Kelly has everything that has ever been done to Minnie. Her g-tube, her port, Oxygen, I have embroidered all of her scars.  I try to do what ever is going to be done to Minnie to Kelly before surgery. This gives Minnie a chance to “adjust”, touch and love on… herself… We also use Kelly every year at the being of the year to share with the class the different things that Minnie has had done, or has on her body so she never has to share her own body. And then the class get to touch Kelly and then they are not afraid. Kelly is an easy way to bridge the kids with Minnie.  So in that spirit Kelly got her Halo! Minnie is not sure when she is going to be ready for me to take picture’s to share with anyone, but Kelly will give you all an idea of what Minnie’s halo will look like. They even have matching jammie’s! The decoration is something all the kids get to do, they change there bars all the time so we are starting with Christmas!

Things you can Pray for

~That we get a room at the Ronald McDonald house

~Both kids schooling

~Minnie’s confidence

~Minnie’s Skin: She has extremely sensitive skin please pray that her skin heals around the posts in her head.

~Ty’s night terror’s

~Our ability to continue to be the best advocates for Minnie

~That doctors are able to obtain the  all past medical records easily

We are traveling Sunday, She has appointments Monday.

How am I? I know you all want to know! I am 31, in menopause, I now have emotions. I have insomnia, I have urges to throw ever thing away!!! I think I maybe I most irrational woman on this plant. I am the what if queen! And I have lost all confidence in myself. But I have learned to go to my bible and seek after Gods word, for the very first time in my life. I feel like the Lord is speaking right to me everyday. And it is simply amazing. So amazing I want to cry. New found emotions once again….

Love you all

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