The whole purpose of out Trip to Utah was to take Tyler to Shriner's hospital. The appointment was to get a consult and possible procedure to help his legs and muscles. The purpose was and is to improve his quality of life and to make him walk.
Rewind to December 23rd:
After 9 months of waiting we got moved up to only having to wait six months and we were able to see and meet Dr. Kwasnica. We discussed botox and other options on how to make him move better and avoid more problems later on.
We told her about our consult for Phenyl and she agreed we should do it. We should get another opinion and that she was more than happy to work with Dr. Gooch at Shriner's.
As we prepared to go we went to the inter net and got as much information as we could. I have exhausted poor google search. I have exhausted my head, heart and knees. I have shared with Dallas, we have shared together and we have prayed SO hard to get the answer to what we need to do with and for Tyler.
The day of the appointment was anxiety filled for me. I had a horrible night the night before and was up till way past a decent hour to help me have a clear head. I was frustrated and tired and more anxious than I could describe.
We got to Shriner's and headed in to check in. Because we had to schedule the procedure from out of state we had to be admitted as a patient and be prepared to go into surgery for the procedure and then meet with the doc for a few minutes before.
Ty and I fell asleep waiting. All I could hear in my head was words that I was going to make the wrong choice and how grateful I was that Dallas was also there to help me. I was also so thankful for a Heavenly Father who I called on Heavily that day.
Dr. Gooch came in and we talked and she started looking at Ty's muscles and legs and feet. She made our decision easy. She was not convinced that at this time he needed Phenyl. She felt that botox was the right way to go right now. She was very impressed with Tyler. She felt that his deformed feet could possibly be fixed with the botox and bracing. She also said that he should be an independent walker. Because of his muscle tone now he may have a hard time walking long distances but he is doing VERY well.
We were then released as an impatient ( about an hour later) and we were headed to Grandma Brown's house.
In the hour of waiting and being released Dallas waited for the nurse and I experienced more of the wonderful spirit of Shriner's. We went to the play area of the hospital. 2 boys who had been patients for several years were there playing basketball. Ty was in heaven. He went over and the 2 boys were so cute with Tyler. They got him a ball and let him throw it at the basket. He would clap when they would make it. He would follow one of them around.
Ty played in the car there and on the motorcycle. He laughed and played.
I cried.
There is such a spirit there. There was a spirit of inclusion from the kids. A camaraderie from the parents and the idea of love from EVERY single person who donates to that place.
The amount of love that is poured into that building is immeasurable. The amount of love and dedication is more than I can imagine. The spirit of charity and care is inspiring and the children who are served there are the luckiest kids in the world.
I know that some day Tyler will have a easier time walking. That the medication and the treatments are no a cure but a way to help him have an easier life. This couldn't be done without Shriner's.
If you ever feel inclined to donate or to give to a good cause please think of Shriner's and their amazing care.
"The reason charity never fails and the reason charity is greater than even the most significant acts of goodness he cited is that charity, “the pure love of Christ” (), is not an act but a condition or state of being. Charity is something one becomes." Elder Dallin H Oaks
Because of their true Charity they have become something. I pray for them and thank them everyday of my life!
The upper floor where parents wait for thier cildren. And the children play as they are waiting for procedures etc.
Tyler playing on the girls motor bike but didn't mind it was pink.
Only car he will be driving for a long time if not EVER. He was having a blast scooting it aross the floor and honking the horn.
Ty happy as could be in the best places in the world. They can feel the spirit there.
Tyler Playing ball
Ty playing ball with the other boys.
4 comments:
that waiting room is amazing. i'm so glad it went okay!
Wow Nancy! I'm so happy to read this. My friend was the director of education for a Shriners hospital several years ago and had nothing but glowing things to say about the organization.
Glad to hear your visit went so well!
I am SO glad Ty's appointment went well. I'm glad that the Doctor was able to make your fears disapear and strenthen your faith. I am most happy that Shriners gives you the love, support and spirit you need. I remember Sis. Anderson's sister spent a lot of her life as a shrieners patient. Sis. Anderson also spoke highly of that hospital. I pray that Ty continues to do well with treatment.
I'm glad it was a good day, and that all your worrying and sleeplessness was unnecessary. I don't know much abouit Shriners, but I should look into it, because we are thinking of maybe moving to Utah sometime int he near-ish future to be closer to my husband's family, and I worry about moving Avery away from all the wonderful resources we have for her here, so I would need to know what would be available for her there if we did go.
You mentioned Ty's deformed feet - do you happen to have any pictures posted of his feet specifically? I've been wondering about Avery's feet and whether they're quite normal looking.
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