Still stuffy

Jameson is doing OK. He still has a stuffy nose,a cough and just a little crabby. He is taking Albuteral (spelling??) in syrup form. We just pray that the medication helps open up his air way passages. Who knows......our Jameson never seems to make life easy!!!!!! I live wondering what will be next=) He is such a trooper.



He has found his little hands and is now rubbing his face. He has boo-boos on his cheeks again. A wonderful friend has made him some cute, soft mittens and that is helping. It makes him sooooo mad when we try to keep him from rubbing his face. He definitely has a strong will and a strong desire to get his way. Just like his Daddy=) ha-ha!!!!



We have an apt. for the Eco-cardiogram on Nov. 13th. I am still a little nervous, but I know that God will go before us. Just think about how God has gone before us in every situation that we have gone through with Jameson. I stand amazed at how strong the Lord is and how weak I am. I often forget how the hand of God has guided us throughout Jameson's life. Remembering the goodness of God is a remarkable thing. I know that we can go through many things because of what God has already brought us through. I am challenged everyday to remember the goodness of God because the struggles of this disease can causes me to be very sad and discouraged. There is a great song......"God is good All the time and All the time God is good".

Thanks for all of your prayers.

Love,
Melisa

RSV

Okay you have all given me a complex. I haven't written the update in weeks now and when we logged on tonight to read "all your comment" ...we had none! Are you trying to tell me that Melisa is a better "blogger". :)

Melisa took Jameson to Dr. Coffman this afternoon and Jman has RSV. It's a cold that a baby gets that goes to his lungs. We have medication that he will take until tomorrow and if the medication doesn't help the cold we will have to spend some time at Arnold Palmer Hospital again. The poor little guy can't seem to catch a break.

We will keep you posted as soon as we know what's going to happen.

Sincerely,
Todd

Cold

Jameson has a cold and it's driving him crazy (not to mention it's driving us crazy too). Combine the cold with the reflux and you have a very interesting spit-up routine. The poor little guy has a nasty cough and we will be calling the Dr. first thing Monday morning. The bulb syringe isn't an option because we can't take the chance of blistering the inside of his nasal passage. Please pray that he will be well soon.

On a positive note...Jameson's eye contact improved by leaps and bounds this past week. He now will lock eyes with you and then smiles, almost on command. He is such a content little guy considering all the things he has to put up with. What a blessing he is to us.

That's about it for now. I don't have a lot to say because I'm to upset that the Rays are getting killed (baseball really isn't that important).

By the way, we have been out of the hospital for over 5 weeks now!!! Praise God from whom all blessings flow. He is so good.

Todd

Hello!!

A great friend brought over that pumpkin wrapped in bandages for Jameson and we loved it!!!! The boys are all going as mummies for Halloween (just for Jameson). I never thought seeing my child wrapped in bandages could be so cute but boy is he CUTE!!!

We went to the doctor and Jameson has gained 1lb and 1 1/2 oz in one month. We were happy. Dr. Coffman came in to see Jameson and he was sooooo surprised at how good he looked. Thanks for ALL of your prayers; God is doing great and mighty things because of you praying for Jameson. The doctor did hear the same heart murmur. I will be making the appt. this week to go in for the Eco-cardiogram. Please pray that we will have no complications and the murmur is something that we will grow out of. I have been given some great advice about going in for the Eco-cardiogram....be the first appt. of the day, and just unbandage as little of an area as possible. WOW!!! I get a little nervous about all of this. Please pray for me=)

A friend came by the other day that had a baby just 10 days before us, He was very cute with amazingly beautiful skin!!! I had no idea how seeing that baby really affected me. I was greatly saddened by what they had......a perfectly normal baby with perfectly normal skin. I cried ALOT. I was so sad that we were going through all of this and really did not handle my emotion well at all. I felt such guilt. I never want to look at what God has given someone else and think that I got the shaft. I felt sorry for myself for all day. I know that there will be good days and bad......but that was one of the worst. I have learned a great lesson though.....I don't have a baby with normal skin; I have a baby with perfect skin. God did not give me the shaft; He gave me everything that He wanted us to have. God wanted us to have an EB baby. We were given so much more than normal. Every time God reminds me of what He has given me, I am so humbled. I want so much to look at everything that has happened in the last 14 weeks and only see how the hand of God has moved and work in my life and pray that the lessons He is teaching me I am learning. If God doesn't give me anything else, I know that today He has given me ALL that I could ever have imagined...a wonderful Savior and a beautiful family.

Thanks for praying for baby Jameson. One day, we will all be praising God for his complete healing!!!!

Love,
Melisa

Sorry it has been so long

We have now been out of the hospital for over 5 weeks. WOW!!! I thought that would never happen. I think, early on, we were in the hospital every 7-10 days for the first 6 weeks of Jameson's life.

Jameson is doing OK. We are still getting alot of blisters everywhere. He is even getting them around his mouth and inside of his mouth. He is still eating OK. Jameson has not increased his caloric intake; he is still just taking the same amount of formula as he was at 3-4 weeks old. That concerns me a little. I would love to see him eating more (prayer request). I will be taking Jameson to the Dr. on Thursday just to see if he is gaining weight. I have not taken Jameson back for the Eco-cardiogram. I will see if there is still a need for us going when we see the doctor on Thursday.

I am still changing Jameson's bandages daily. Some people have said that maybe we could go every other day.....but I am a chicken. The last time we went every other day, we were in the hospital within 5 days. He just seems so much happier when his bandages are clean. I would too if I were him.

I often wonder if tomorrow will be the day that God chooses to heal Jameson. I have to say, there are many days when I am really impatient (like today). I often want this disease to be over and to have a baby with amazing skin. His skin is improving, but just not as fast as I would like. I am learning to be content (but not always happy though). I am still thankful for God's answer to me awhile ago. WAIT!!!! I feel like a child some days...stomping my feet at God and saying I want this NOW. I have a long ways to go but I am still running the race. In the end, my desire is to glorify Jesus and grow closer to Him. "To God be the glory GREAT things He has done".

Love,
Melisa

It is OK

Normal is such a relative term....and it is at this point in our lives that EB is becoming normal. It is OK to have a baby with EB. I have somewhat come to terms with the day in and day out routine of living with this disease. Better yet, I am loving an amazing baby. He brings to my life amazing joy and fulfillment ( worries and fears as well). Jameson is the baby that Todd and I prayed for. We were sorta' skeptical of having another child. I had been challenged by a wonderful friend to get up early (5:30 a.m. to be exact) and spend time with the Lord. I took the challenge and I was very blessed by what God had to say to me. The Lord kept taking me to scriptures about having another baby. I told the Lord "NO, I don't think that is what we should do" and again the Lord consistently over many days made it very clear to me. I told Todd and he was not opposed to the idea that we should have another baby. Well......first try and we were pregnant with Jameson. I was SHOCKED!!!!!! Truly, we were meant to have a baby!!!!!! I am so happy that Todd and I were obedient. I know that God had to make this whole experience point directly back to Him. Otherwise, I really could not have handle what we have been going through. God asked Todd and I to have this baby. We said yes and now we have Jameson. We feel so privileged to be chosen by God to walk this road. As hard as it is!!!!!!!! It is gratifying every step of the way. It is so true what God says...He will never give you more than you can handle. Even when I tell Him it is too much. He reminds me, without His strength, I cannot do it, but with Him I have the ability to manage all of this and glorify Jesus through it. I often wonder why I say so much. You did not need to know all of that but I just felt led to tell ya'.

Jameson is still having A LOT of blisters on his back and belly!!!!!! Please pray for complete healing. His little legs and arms have not ever looked so GREAT!!!! His ankles and feet and hands are improving. Thanks for all of your prayers, they are being answered!!!!!!!

Love,
Melisa