Saturday, June 22, 2013

General Fulton Update

Hello everyone! Generally my silence means life is busy- which is a good thing. Busy is our 'normal' around here and we all are ready for more 'normal' to be sure!

We are finishing up school as best we can, although we are still a bit behind. I am also continuing to pursue my clinical master's certification in herbal medicine in hopes of better understanding how to help Fulton heal. God is so good to have given us so many medicinal remedies! I just have to take the time to do all the trial and error it will take to find out what will work best for his head wounds and his scar tissue.

Fulton's head has been keeping us on our toes lately. For awhile there, it was getting so much better. He could even 'wash' his own head and proudly show us. "Look Mom!" rub rub "I can do it myself!"

The antifungals and calendula treatments were working so well and we really hoped we were finally going to be through with the head wounds and get to get him back into his face mask. The bulging tissues were receding and the redness was going away. We even happily cancelled our appointment in Galveston a little over a week ago, since they only wanted to see him if there was no improvement.

But now the worst areas have begun to open up, like a crown of thorns around his head. Tears and pain have taken over once again and he is angry and yet very snuggly now. I have resumed part of the headcare duties, since Fulton is now mad at Jay pretty much all the time for 'hurting his head'. Jay is a little more firm and does not take any nonsense from Fulton, and this usually results in a very good scrubbing (which is needed) but a very angry 5-year-old.

His tummy hurts and his appetite is diminished. We are so grateful for the case of Kid Essentials calorie booster we received in the mail the other day, as his weight is beginning to go down. If he loses too much weight, he may have to be readmitted until they can get him eating again. (I saw it happen from time to time when we were still there - and they were always talked about in hushed tones as though the parents were doing something awful to their children. I used to think, "How can you let your child lose weight?" But now I understand. And it is a bit frightening.) Let us pray it does not get that bad!

Fulton and I are headed back to Galveston next week for a quick clinic appointment to decide how much head work they will be doing in July. I so wanted to show them his improvements! :( He also needs to get remeasured for his pressure garments. Unfortunately the custom garments we received in the mail the other day were too loose around his upper chest and shoulder areas, and since he has significant scarring there (especially on the back of his shoulder) it is vital that the garments fit tightly. They warned me that we could be going there several times a month in the beginning. I understand why it has to be this way, but it sure does rupture the normal flow of homelife.

Please, for those of you who are still here, please pray that his head finally heals! His face, at this point, is a lost cause, since the critical time for him to wear his facemask has now passed. The scars will be large and mostly permanent. I know there is a reason why this is happening - I am just having a hard time figuring it out. I have since lost my devotion to the Holy Face of Jesus. I always seem to do better when I can separate myself from worldly ways, so perhaps I need to begin again and keep myself better focused on my faith instead of on the day to day trials. A week in a cloistered convent sounds heavenly right about now! I must regroup and recharge, and persevere in faith!

Wasn't our dear Papa BXVI so wise to proclaim this year the Year of Faith? Who knew?

Thank you all for your continued prayers and for fulfilling a few of our items on the Wish List. They are truly helping to ease some of this burden - and Fulton thinks it is funny that his head bandages magically appeared in a box on our porch! LOL!

Have a blessed weekend everyone, and I will keep you posted on our trip down South next week!

2 comments:

  1. I would like to send you an e-gift card from Amazon. I don't live in the States so the shipping isn't straightforward b/c we us Amazon.ca in Canada not Amazon.com. If you would send an email address to kylaholzer@hotmail.com I would be happy to send you an e-card to help Fulton. Praying for your family. An e-card is the simplest way to go.

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