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 After a few unpublished blog entry’s I am about ready to toss my computer right out the door.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
Thanks for sharing Rach! I’m praying for the LORD’s strength for you all and especially for healing for Minnie! Love you all!
You guys are amazing, and if you need or want for ANYTHING, please let us know. This procedure sounds to be a wonderful move. We are praying that the Dr’s continue to treat you all with the same devotion going forward.
Minnie, You are an inspiration to my family! You are the most wonderful little girl in the world!
Ty, you have grown into quite an amazing little man, and I am praying for your “terrors” to go away! I know they will. You are a very strong little man, and I know your family admires your courage!
You guys take care, and want you to know we love you all!!
I love you Rachel! YOU are the best Mom ever, and you make me proud.
Praying without ceasing here . Let us know if you need ANYTHING!
I really appreciate it when my peeps post comments. Its great to know folks are praying for us, and we appreciate your encouragement!
Thinking of you and Minnie-
Please don’t lose confidence in yourself.
I wish you could see yourself the way others see you…..strong, brave and one of the best Mommys I know.
Lots of prayers coming your way!
Rach and Josh, your love and strength is so inspiring. You are an example to all whom you touch. Our love and prayers go out to Minnie and all of you.
It is nice to hear that your Drs are seemingly managing the situation versus the inaction I’ve been hearing about prior to going to this hospital.
Stay on’em Rach
What an amazing family! When Ps 139 talks about us being knit together in our mother’s womb – it also describes to me how God knit together the Roger’s family to show such strength, character, perseverance, humor in amazing ways, … lots of good words that bring joy in the truest definition. We’re praying for you all & love you so much. I’m so glad to know each one of you.
We will be praying for every hand that touches Minnie over the next several days and weeks. I know when your kids are sick, it’s the little things that matter- like time to sleep, eat and time to process all that is going on. Try not to thing too far ahead, it will drive you crazy. You are bathed in prayer this week- so you WILL get through this.
Love-
Rebecca
Neice, you and all of your family are very dear to my heart. Prayers are without ceasing. Have a glass of red wine, it will help your stomich. Seems
I’ve read that somewhere.
Real anxious to hear an update – love you all..