Help! This dogs getting me.

Help! This dogs getting me.

Thursday, September 4, 2008

Living life with us

Well, like always, I hesitate to tell you of the "Yuck" times. Last night, Jameson cried ALL night and we thought that we would be back in the hospital today. In the past, he would cry all night and then start with a fever and back to the hospital we would go. He was soooo uncomfortable and we were unable to console him all night. A pain management Dr. told us that staff infections really itch and cause a great deal of discomfort. So we thought he might have another staff infection because he was so unbearable. As good as yesterday was, last night and today's bandage changes were just that bad. He had many more blisters today than yesterday. I hate seeing him with so many blisters, and I cannot tell you how much it hurts to see your baby in such a condition. I struggle with the ups and downs a lot. It seems like it would be easier if it were hard all of the time or either easy all of the time. The inconsistency of this disease is AWFUL!!!!!!!!!!! In my heart, I think everyday will get better but reality says it will be this hard for a while. I do know that the Lord will NEVER give me more than I can handle. But I told the Him just today that it is too much and He needs to make the blisters stop. I came to understand something very special about my Lord and Savior today. I learned that He listens and has amazing compassion towards me. He helped me to know that it is not my will but His that is being accomplished. I just have to do what He has called me to do and that is take care of my beautiful baby boy and stop trying to do this by myself. He wants to hear my frustrations and my desires, but He also wants me to glorify His through this valley.

Love, Melisa


Chuck and Tammy said...

As I sit here with tears running down my cheeks, I think about a magnet that hangs on my fridge. It was given to me by a Sunday School teacher in Florence. It came from the book...Why Cope when You can Conquer?...J. Purcell. When I say..."It's impossible", God says..."All things are possible (Luke 18:27): When I say... "I'm too tired", God says... "I will give you rest" (Matthew 11:28-30)
When I say... "I can't go on", God says..."My grace is sufficient" (2 Corinthians 12:9) , When I say... " I can't figure things out", God says..."I will direct your steps" (Proverbs 3:5,6), When I say..."I can't do it", God says... "You can do all things" (Philippians 4:13), When I say... "I'm not able", God says... "I am able" (2 Corithians 9:8), When I say... "I'm afraid", God says... "I have not given you a spirit of fear" (2 Timothy 1:7),
When I say..."I'm always worried", God says..."Cast all your cares on Me" (1Peter 5:7), When I say..."I feel alone", God says..."I will never leave you" (Hebrews 13:5), When I say..."I can't manage", God says..."I will supply all your needs" (Philippians 4:19). I take this magnet down and read and re-read it often. I hope it helps you as much as it has helped me during diffcult times. We continue to pray for you and Todd and those three precious boys. I love you girl!!!
Hugs and kisses to all.
Chuck and Tammy

erin and britt said...

We love you. Erin and Britt

Steffi said...

My sweet,sweet friend......
it is so hard for me finding the right words even in german- now I have to try it in ENGLISH- don`t look at my mistakes.
I mailed Todd, after I haven`t heard of you. Because that long time of your silence I did`t feel well to start a mail or giving you a call and finding the right words. I asek myself, what could be the reason of silence- and in my heart I felt sadness and fear. I was really afraid of hearing something went "wrong".

One day before I wrote Todd, I read an article in a journal about "butterfly children". That`s the "name" for the EB illness in german. When I wrote that, I ask myself how strong a family must be to handle this great pain??!!So when Todd decribed your situation I was informed and felt in a deep SHOCK!! The last two days ( nightshifts )I wrote the whole BLOG to new everything about little Jameson. Till now I couldn`t get those thing out of my throught and the stone out of my stomach. When I read about you last night I couldn`t stop crying. With that blog you seemed not far away, but you ARE!! I`m so overwhelmed ( not an easy word )about all your family and frieds giving you that much support with those special comments and payers. That is soooooo special. I remember you saying that you pray for a baby and the wish came immediatly true. I was thinking in a "funny" way "Maybe I shall ask her to pray for me- she might be having a better connection to Him. You got such a BEAUTIFUL little boy. He is so handsome(?). Beside I LOVE the name. I always tried to remember what name you told us-I knew it wasn`t jeremia.

My dearest friend, I know that you are one of the most beautiful, deepest loved, strongest....wife, mother, friend, the world. Ì couldn`t be there giving you one of my special big hugh- I wish to, but I can just be there with my strong thoughts and prayers.

What I did and waht I KNOW will bring a SMILE on you face, is filling a parcel up with SCHOKOCROSSIS and lot more of that great german choclat. Maybe that will also giving you a little bit of good feelings. If you need more, I can send a container :o) of that good stuff. Tell me what else I can send you.....
Love, I hope the boys are doing good and Zach enjoys school??!!
You are always in our HEARTS and minds. We pray for you and love you.

Greetings from over here, 10000 miles away.... Dirk, Mia &Steffi

Sara said...


EB in general can be itchy! There are some oral medications that many with EB use for the itchies. One is typical old kids Benedryl and the other is available by perscription and its called Atarax. I don't know what the min. age is for either but I am sure Jameson's doctor does. We have used both on Sami and it seemed to help at times. Usually one side effect is sleepness (not a bad thing sometimes:-) but with Sami those types of medications have the opposite effect and had her bouncing off the walls! But it did help with the itchiness. Other also have Aveno Oatmeal Bath to help with the itchies.

I hope Jasmeson is just itchy in general and its not a sign of another infection.

Stacey said...

"As you learn more and more how God works, you will learn how to do your work. We pray that you'll have the strength to stick it out over the long haul--not the grim strength of gritting your teeth but the glory strength that God gives. It is a strength that endures the uendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that He has for us." Colossians 1:9 -12 MSG).
Praying for you to have His glory Strength every day and that it will spill over into Joy when you least expect it.


Dial Family said...

"May the favor of the Lord our God rest upon us; establish the work of our hands for us." Psalm 90:17

Praying God's enormous favor over you and your family.

Katrin said...

Dear Melissa and Todd...

...Steffi forwarded Todd's email to me the other day and this weekend I found the time to read through your blog.

This whole situation really touches me and I wish knew the adequate words to write to describe how I feel about this.
It is so strange how close sadness can be linked to the happiness and joy a newborn baby normally brings to a family.

It is really moving to read all the supportive messages in your blog and I can only join in on what all your friends here have already said or written before.

You have given life to a beautiful littel baby boy who is obviously so very welcome in your circle of family and friends. He is embraced and surrounded with so much love and warmth and I wish for you, that this love will give you and your family all the strength it needs to live this "new" life.

I found this poem the other day and remembered it when I read Todd's e-mail, so I wanted to post it:

* * *

We are a family now, a whole,
Of which you are a part,
And you are just as much my child
As any in my heart.

I do not love you differently,
Nor would I give up less
Of all that life has given me
To bring you happiness.

There is no limit to my love,
No boundary you might cross,
No price you might be asked to pay,
No need to fear its loss.

We are now one, the five of us,
Windows of one home.
As long as I have life and breath,
You'll never be alone.

As my Steffi-Sis has already written, you guys are always in our thoughts and hearts! I'm really glad that had the privilege of getting to know you and wish I wouldn't have had that accident and could have come to Florida this summer, too.

I'm sending you all my love and strength!
You're kids are amazing!

Take care!


setsma said...

Melisa, when you share the hard times, we feel like we're really a part of your journey. It also helps us to pray more spcifically. Know that our love, thoughts, and prayers are with you and we check the blog as often as we can - which is pretty much most days.

Much love,
Aunt Lynn

HeJones56 said...

Thank you for keeping us updated. I follow up with Jameson's progress daily. Sorry I missed the family at the hospital the other day, I will be working on Tuesday so please give me a call,

Love you guys,

Hermine Jones