Help! This dogs getting me.

Help! This dogs getting me.

Thursday, August 14, 2008

A new normal

The days are getting a little easier. I am slowly learning Jameson's cries, his likes and dislikes. He is truly a great baby. I will never understand what it is like to be Jameson, but I do know that the hand of God is all over him. He will smile during his sleep and that just gives me such comfort knowing that he can rest peacefully. I am learning to love him in ways that only a mommy can. He touches my heart like no one else. I was having a bad day yesterday and I went to God with many question. Why? Why? Why? The Lord answered I will not know all of His secrets. In my devotions David Jeremiah said,"The secret things are God's determined, sovereign purpose. Our problem is wanting to know all God's secrets. But our responsibility is to take what God has revealed and work to understand it and implement it with all of our heart-and leave everything else to God". I do not need to know the why's(although my heart wants too) all I need to know is the ONE who is in control and trust in Him.

Jameson went to the hospital today for wound care. Once a week, he will go and the wound care specialists will take off the dead skin that I am unable to remove. This is a blessing because if the dead skin does not come off it will cause infection. I never knew what I was capable of doing until God gives you the strength to care for a child that cannot do the "normal" things in life..... such as produce skin. We are still having blisters daily and this concerns me but from my understanding this is common in EB babies. Our prayer is that the blisters will stop and his skin will continue to strengthen.

We are so encouraged by your comments and we cannot thank you enough for your prayers. We are finding joy in the mist of really hard times. And this can only happen because your prayers for us are being answered. Please tell Jesus thank you for answering your prayers and our!!! Please don't stop praying for us and baby Jameson.


Hage Family said...

Oh Melisa...I wish I could just wrap you in my arms...what a lucky guy Jameson is to have YOU as his mommy. God didn't make ANY mistake...HE knew just what He was doing when He blessed you with that boy. The roads will be long, and tough, I'm sure...but a mother's love knows no limits. PLEASE let me know if there is ANYTHING I can do for you or the boys! Hugs...

Gretchen said...

We love you guys and read your blog almost everyday. Figured it was about time for me to comment! We pray for Jameson every night, specifically for his healing and for peace and REST for you!

Sara said...

Melisa, I am glad things are getting 'normal'! And that you are able to get help from Teri once a week with dressing changes. Are they doing whirlpool baths? As always, let me know if there is anything I can do.

Lynn said...

Melisa, I just want to come and hug that sweet, smiling face of yours! God has truly blessed you and Todd through little Jameson. It is in such times we feel God's grace in such abundance we can hardly take it in. May that grace surround you each and every day.

We love you and continue to pray for all of you.

Aunt Lynn

Tom Tiffany said...

Melissa & Todd, not a day goes by that I don't think about your family and especially Jameson. There is no question you are strong enough to climb this 'mountain' that God gave you and I can't wait to get back to Orlando and hopefully come by to see you all. In our thoughts and prayers...Tom T.

G. Figaroa said...

Melissa and Todd,

I'm glad you are adjusting your life at home. God can work miracles, but it will happen on his time, not ours. In the mean time, I hope that things will get easier every day for your entire family and that your two olders sons don't feel left out with all of the attention Jameson requires.

One question: Have you received the results from the biopsi performed by Dr Connelly? If you haven't just call them at 305-243-3031 and they can tell you over the phone. They could even fax the result to you if you request it. No special trip to Miami is needed. Usually (in our experience), if we didn't call for lab results, they would not have call us. Even with results that indicated that our son needed more medical attention (i.e. antibiotics for an active infection)

You should also let them know what is going on to Jameson (problem with double hernias). If it was the fault of Jackson's Hospital for letting him cry for so many hours, let them know. They should have been ready to re-bandage him before removing any bandages. My son has EB also, and I would never let anyone take my son's bandages all at once when he was a newborn, especially if they were not ready to re-bandage him. They used to do one linb at a time. I suggest you do the same. Now, that my son is almost two years old, we do all of the bandages ourselves. No one touches his bandages, but us. Not even before medical procedures (i.e. skin cultures, baby shots or even surgery). May be you can avoid this problem on another family that goes to Miami with a newborn baby with EB if you let them know of all of the complications you are experiencing as a result of that Monday you guys were there.

Good luck on the surgery next week. I will be praying for everything to go well and for a quick recovery.

Take good care of your little one. You can call me if you have any questions or if you need someone to talk EB related issues.

Carmen Figaroa
(from Orlando)