Help! This dogs getting me.

Help! This dogs getting me.

Thursday, August 21, 2008

Another day Another trial

I often sit at the computer and pray,"Lord what would you have me say tonight?" I find myself struggling to tell you guys the truth because it is not the best of news and I am not a negative person. I want to tell you that the days are getting easier...but there not (right now). Everyday poses a new set of struggles. Today, I went to wound care with Jameson and his hands are in bad shape. They want us to see a hand specialist. Jameson has a lot of calcification on the tips of his fingers and the palm of his hands. This presents problems with his flexibility and movement. They are saying that it needs to be looked at because of the long term problems this may have with his development. I have been told by a friend and Eb mom that it will probably get worse before it gets better. This disease is so unpredictable and no two children are alike. Soooo...we are praying that the days are going to get better soon. We can only think about today and not tomorrow, because just thinking about 1 minute from now is overwhelming. Sorry about all of the heavy information. I cannot wait for the day that I will be telling you about him rolling over and his first steps. You are walking through the fire with us and I am so thankful for the walk. God never said that it would be easy, but He did promise to walk with us through the trials.

We have been advised to go to Cincinnati. Please pray that God would gives us wisdom in making this trip. I am fearful of taking him so far from home; when he is so young.


tiffany said...

here is some encouragement that I was reminded of while reading this. In Daniel, when it talks about Meshac, Shadrac, and Abednigo in the firey furnace there appeared a figure that looked like "a son of the gods". Know that while walking through the furnace, God is with you EVERY step. You can be put in the hottest of furnaces, yet, He is still with you. I am also reminded of a verse in Psalm 34 "The Lord is near to the brokenhearted, and saves those who are crushed in spirit." I am constantly praying for you!

Christine Van Dyk said...

I am reminded of how when God provided for the Isrealites in the wilderness he caused manna to fall from the sky. Each man, boy, girl, woman, old person, etc. gathered the exact same amount. God became the portion each needed. Whether the need was small or big, God adjusted his provision to be exactly enough. That is my prayer tonight for you, that God will be your "portion forever" that He will miraculously and supernatuarlly adjust Himself to fit the needs of each specific moment of your journey. I pray He will be your fill and your portion and that you will be lacking for nothing. We love you guys. We too are constantly praying for you.

Sara said...

Oh Melisa,

I know this is hard.... if you want my advice, i'd say don't worry about the hands right now. Or going to Ohio. Deal with the hernia's first and then worry about the rest. The majority of EB babies are developmental delayed in some areas, but they catch up!

He is almost 6 weeks and you are probably about half way through the hardest part of this jounrey. I'd say for the next 6 weeks just stay on top of wound care, and get him to gain some weight. Once he continues to gain (even if just a little at a time) that means not only is he getting enough to gain but to heal as well!

I learned of some new cream that other EB patients LOVE. It recently came back on the market and I am trying to get you a sample to try. Some many others have found so much sucess with it, that I hope you will as well.

If you want I can stop by this weekend and take a look at his hands and see if I can think of anything that might help.

I worry that traveling to Ohio at this point will do more harm that good.

I am going to ask other EB parents what they did about callous' and see if I can come up with any other tips for you.

Please call if there is anything I can do or if you just need to vent!

Chuck and Tammy said...

I was reading an article in the Baptist Courier about an all-American athlete from Clemson. She was being inducted into Clemson's Athletic Hall of Fame. She is also a youth pastor at a church in Greenville. She was stating that she could have never imagined God's direction for her life. But another did...Ephesians 3:20..God is able to do immeasurably more than all we could ever ask or imagine, accoding to His power that is at work within Him be the glory. When you feel like you can't go are so tired or so scared...You can because God is at work within you. One last verse..James 1:5...If any of you lack wisdon, he should ask God, who gives generously to all without finding fault, and it will be given to him. We love you and are praying for you!

Chuck and Tammy

Sara said...


The name of the product is Restore Contact Layer made by Hollister. National Rehab carries it as well.

I hope your hospital stay is a short one again.

Dial Family said...

Please do not fear to share the truth of your situation with those who love you. The power of an earnest prayer is unbelievable. God has already provided so much for Baby J and He will continue. He is a God who heals. Even His presence has a healing effect. He may choose to let you walk through this, but he will provide for you in ways that we cannot even imagine right now. Rest in His awesome shadow, let Him be your umbrella.

We love you and are praying for healing for J, strength for you and Todd and that Z and N are understanding.

Matt and Kathleen

Jennifer said...

Thank you for your honesty- it takes a lot of bravery to be vulnerable and transparent like that, and I respect you for it so much. Much more even than if you put on a happy face each day and said everything was "fine." It helps because then we know how we can best pray for you all. It is for each of you that we pray, not Jameson only, and of course it is a blessing to do so for such a wonderful, sweet family!! Your precious boys are so blessed to have you for a mommy, and you are such a strong woman for caring for them as you do. Probably much stronger than you'd ever thought you could be. My heart is with you, and although none of us can know the road you, Todd, and the boys are on right now, just know that we love you so much and are taking your specific trials, needs, and the little victories to the Lord in prayer. I am thankful, too, for the EB moms you have met who are such a great support for you- no one knows firsthand better than they do, I'm sure! What a great thing. Have a good weekend and thank you so much for keeping us all up-to-date with little Jameson. Much love, Jenni, Kenny, Savannah and Josh