Hurray for Home!

Tuesday, November 25, 2008

Thanksgiving

Hello Everyone,
Well turkey day is right around the corner.....It is our prayer that you all have a very Happy, healthy and blessed Thanksgiving. We are so very blessed for our family and friends and God's healing hand on Hayden and we would just like to let you all know how much we appreciate your prayers this year for our family as we traveled on our journey. We see God's hand everytime we look at Hayden and how far he has come in the healing process from the surgery. Hayden is able to enjoy eating by mouth again and that is truly a great blessing. We truly want to give God the glory for all HE has done. We pray that you all have a very nice Thanksgiving and that you feel as blessed as we do to have a loving family. Some here close by to share with, some many miles away that we can only share the holiday with by phone, and some in heaven, and all have helped mold and shape our lives from their witness and make us into what we are today. God bless you all and have a great Thanksgiving!!!!!!

Still Praising Him for His Grace,
Mimi

Thursday, November 20, 2008

Praises-Thursday

Hello Everyone,
Well the week is almost over and we are getting some rest finally. Hayden has had a good week at home. Christy and Dave took him to Vanderbilt today for a check on his incision and Praise God Dr. Netterville said all looked good and cleared Hayden for eating soft foods by mouth. Hooray!!!!!!! He gets to enjoy his turkey dinner next week. After they got the news they had to take him to Golden Corral in Franklin because that is his favorite and Christy said he got Mac and Cheese and mashed potatoes and after he ate some he looked at Christy and said "Mom this is so goooooood". That just makes me want to cry because I know how hard it has been for him not to eat his favorite foods, even when we tried to hide our eating from him. But God is always faithful in His time to complete his work.

We are so very grateful to God for his infinite healing and continued blessings on our family. Will close for now........

Still Praising Him,
Mimi

Monday, November 17, 2008

Monday PM

Hello everyone,
Well Mimi is at home alone and it is very quiet here. Sometimes we need that so we can listen to what God is telling us to do.

Spoke with Christy today and she said Hayden has had a good day he and brother have been sleeping in on mornings until 9:00 Am which is a rarity in the Johnson house, they are usually up and going around 7:00 AM. So needless to say maybe Mom is getting some rest now I hope. We are so thankful that we are at home and able to sleep in our own beds even for a little while. We are continueing to pray that the next time Hayden goes for MRI the tumor will be gone. We are still waiting to here from Dr. Suen's office about appt to Vanderbilt to check incision this week so please continue to pray that incision is healing well and Hayden will be able to eat by mouth again this week. It will be easier on Mom and Dad because it is hard for them to feed Mason and sit down together as a family to eat their cooked meals in front of Hayden and him not to get anything by mouth, even though they feed Hayden first via G tube.

This partial tour of duty has ended for now and I pray it will not begin again unless it is the radiation part and that Hayden will not have to go thru another surgery but only God has control over that and in His time we will know, and if He chooses to heal through no surgery or with surgery we will be thankful for His healing blessing for our little man we have trusted Him for His healing thus far and will continue to trus Him. Will close for now......

Thanks for all the comments, prayers, support and love for our family, we are so thankful for each one of you that have been on this journey with us and lifting us up before the throne of grace.

Still Praising Him for His Faithfulness,
Mimi

Saturday, November 15, 2008

Sat. Morn

Hello Everyone,
Well guess what? I'm finally HOME!!!!!! Yes and guess everyone is here under one roof for a change Brooke, Jeremy, Dave, Christy and boys, and of course Papa. It was great to sleep in my own bed for a change.

Hayden made the trip well and we will go to my church tonight for a gospel singing. So we will see how that goes. Christy talked to Dr. Suen and he will try to get appt. with ENT in Vanderbilt next week. Pray incision is closing well and that they will release him to eat his favorite foods by mouth also. Will blog later.......

Thanks again for all the prayers.....

Still Praising Him for his Faithfulness,
Mimi

Tuesday, November 11, 2008

Hallelujah!!!

Hallelujah!!!!!!!!!!
We are out of here folks......Hayden got a good report today. Dr. Suen said Hayden's incision looks great he did not run the light down his throat but he was pleased with what he could see. He sutured it pretty tight he said. Anyways his trach site looks good, tongue looks good and throat looks good. Yeh!!!!!!!!

We are packing so I must close for now. Thanks for all the prayers.

Still Praising Him for Answered Prayer,
Love Ya,
Mimi

Monday, November 10, 2008

Mon. Eve.

Hello All,
We are as busy as bees around here getting everything packed up preparing to go to Dave's Mom's for the day on Tues after Dr. Suen sees Hayden at 9:00 AM. Then we will travel to Lewisburg, Tn (home for the Johnsons Hayden,Mason, Christy, Dave) then Mimi will travel home to Ga. ASAP. Please pray that all is healing correctly so we can leave here because it would be a major set back if we cannot get out of here for a while. We are all excited about going home. Hayden has had a pretty good day today and his tongue is still swollen and we are still playing the turtle game and I know that is getting old for him. But if we don't it might not go well on Tues. Dr. Suen might want us to stay until swelling is down.

We will be out of pocket for a few days, I'm not sure my computer will pick up at Dave's Moms because sometimes our cell phones don't work out there. She lives out in the country away from everything so I'm not sure if I can get on to the internet. If not please understand that we are not stopping posting on the blog it will just be a few days. I hope to post one more time on Tues. AM after we find out from Dr. if all is well so I will let you know.

Thanks again for all the prayers.

Still Praising Him for His Blessings,
Mimi

Sunday, November 9, 2008

Hoorah!!!!!

Hello Everyone,
God is good!!!! Well everyone is here at the hotel under one roof for now. Hayden has been pretty fussy today but I believe it is because of anesthesia getting out of system. He has his trach out now and is doing ok w/o. We have appt with Dr. Suen on Tues at 9:00 AM and are praying that incision is healing, tongue is swollen again and is outside of mouth for now but he can pull it back in when he wants too. So we again are playing the turtle game. So please pray for incision and tongue swelling to heal.

The plans for now are to spend one night with Dave's Mom in West Tn and then go to Lewisburg after that if all goes well on Tues. Tues is also Tommy's birthday which is Dave's brother who passed away this summer. So it will be good for Dave to be with his Mom on that day. Then hopefully Mimi will get to go home.....Yeh!!!!!!!!It will be nice to sleep in my bed again, and I'm sure Christy and Dave would like to get back to their routine with their family and not have THE MOTHER/MOTHER IN LAW THERE. Enough is enough already, it's like having Nanny 911 around 24/7 HAHA :) :)

I cannot say enough thank yous to everyone who has continued to comment, pray, send cards, goodies and support for our family during this tour of duty with the tumor. We are so very grateful to all of you who continue to lift us up daily in prayer. I do not know how people function with out the friends, family and a loving church family who are always there for you no matter what the circumstances. God has been faithful and so have you all and for that we are truly blessed. Thanks again.......Will talk on Monday after we see how Hayden's day goes.

Still Praising Him,
Mimi

Hallelujah!!!

YEH!!!!!!!

And Glory to God in the Highest for all He continues to do!!!!!

Just phoned Christy and Hayden has trach out and walking the halls. Dr. Suen has been in and signed off on him. Dr. Suen's office is closed on Tues. but he is going to come in long enough to see Hayden and then we can get out of Little Rock. YEH!!!!!! The nurse just walked in with dismissal paperwork. SOOOOOO will blog later tonight after I see our little hero!

Please continue to pray for healing of incision so we can spend holidays at home, but most importantly Hayden will soon be able to eat by mouth and no more tumor.

Still Praising Him for HIS love, mercy and Grace!!!!
Mimi

Saturday, November 8, 2008

Sat. Eve

Hello Everyone,
Here's an updated from Sat. surgery. Dr. Suen did surgery with Hayden and his report was that the incision was open where he saw at the appt. and he said there was good blood flow and that tissue looked good with no infection but he did clear off margins and contoured Hayden's tongue meaning he took some excess tissue from center of tongue where Hayden had damaged by biting and also took off areas that were sloughing off anyways. He said there might be some swelling but it should be minimal. Dr. Suen will check Hayden on Sunday and then if all looks good will take out trach at that time. Then if all is well they can come back to hotel on Sunday. Dr. Suen will check Hayden again first part of week and we should be able to come back home Tn and Ga by middle or end of week. As for MRI Dr. El Babba called and said remnant of tumor is still there but is unchanged from surgery so that means we can be signed off by Dr. Al Mefty orders to return for next surgery after holidays. PRAISE GOD!!!!

So as for praises we are sooooo thankful for good report today. As for MRI well we were a little disappointed but at the same time God has been faithful as always and for that we are truly thankful......

Now as for prayers: Please continue to pray for continued healing of incision site and that Hayden will soon get to eat by mouth. Dr. Suen said it would be at least 3 weeks for food but as early as Monday possibly for water by mouth. Another praise!!!!

Well Mason is touching every key he can get his hands on and it is hard to type and have thoughts with the terminator at the keyboard. Must close for now. Thanks again for all the prayers.

Still Praising Him for His Goodness,
Mimi

Friday, November 7, 2008

Friday Eve

Hello Everyone,
Well Mason is a sleep and Hayden, Christy and Dave are at the hospital. I have a praise Hayden's day went very well so far. He was told about the stay in hospital and what they were going to do and he actually did very well with the info. Meaning not as much of a problem as we expected he would do.(Meltdown) We played and had fun and then Mimi and Mason and Cindy and Ronnie left the hospital. Now comes the hard part, they will put an IV in tonight and as of right now (10:58 PM) it has not been done so he is still a happy camper. But hopefully he will do well. God answered our pray about his being very anxious about going to drs., hospital etc. so I'm going to trust Him with the IV drama. We are on the schedule for 8:00am on Sat. 10/8 and we would very much appreciate your prayers again. For no leakage from previous surgery and that Dr. Suen is able to repair the tissue from the last tumor surgery where it has not healed and tongue and they both will heal correctly and swiftly, so Hayden will be able to eat by mouth again. We also will be getting the trach out after surgery plus another MRI for Dr. AL Mefty to make sure the piece of tumor that is remaining has not changed from post surgery MRI.

Thanks again for all the prayers being lifted for our little man and family. And many thanks to the people from Lewisburg Community and Church family for all the goodies sent via Ronnie and Cindy to us. Cindy and Ronnie have been a God send, and I could not have been able to be with Hayden as much if they had not been here to give us a hand with little Mason (aka terminator) We love you all and appreciate all you do for us.......

Still Praising Him with a grateful heart,
Mimi

Thursday, November 6, 2008

Thurs Eve

Hello everyone,
Update on Thursday visit with Dr. El Babba. We saw the Dr. today after a long wait and He said he talked with Dr. Suen regarding Sat. surgery. Dr. El Babba said he would be available on Sat. also if he was needed in OR in the case of Cerebral leakage, lumbar drain etc. which we hope is not the scenario. Dr. El Babba talked with Dr. Al Mefty in regards to going home and Dr. Al Mefty said he wanted an MRI also on Sat. after surgery while Hayden is still sedated. IF the MRI shows no change in the remaining tumor growth then Dr. Al Mefty will allow us to come home. And we can wait until after the first of 2009 to do next surgery and let us get thru holidays and allow Hayden to heal. So please pray for all to go well on Saturday. Hayden will also get the trach out. After the surgery Dr. Suen said Hayden would then stay overnight at hospital and come back to hotel for few days to allow time to make sure incision is healing properly and then we should be able to come home to Lewisburg and GA.

Hayden was already a basket case today just going to Dr. El Babba's office so having to be put back in the hospital overnight (Friday night) for Sat. surgery is really going to be tough on everyone especially Hayden. So again please pray.......

I guess that is all the news I have for you right now. We are very excited to get the news of a possible jail break from here at least until the first of the year. I must close for now Mason is wanting to play on computer and he is not allowed any where close to the keyboard.

Still Praising Him,
Mimi

Wednesday, November 5, 2008

Update-Wed eve

Hello Everyone,
Just wanted to update you on todays happenings. We were able to see Dr. Suen today and he did a light down Hayden's nose and looked at the incision said it is not closing on its own. So that being said Hayden will go in to the hospital on Friday of this week and have surgery on Sat. Morning at 8:00. This will take about 1 and half hours and Dr. Suen will clean up the margins of original closing of tumor removal surgery incision and take a closer look underneath the first layer to make sure there is good blood supply on the lower levels of tissue and make sure that is has healed then he will close the opening with sutures. He will then take off the remaining sloughing of the tongue and clean his tongue off . Hayden will be in hospital overnight and they will take the trach out on Sunday. Hopefully he will get to come out of the hospital then back to the hotel. Then maybe we will get to leave Little Rock and be home (Lewisburg and GA) for the holidays.

Hayden has gone all day with his tongue in his mouth....Ain't God GOOD!!Very little swelling. Dr Suen was very surprised to see Hayden with his tongue in his mouth. He was very pleased.
We were also very pleased to see him keep it in all day w/o having to play the turtle game. We on the otherhand are very weary of another surgery for our little man as we know it is to help him. But it is very hard to explain to a 5 yr old that he has to have another surgery done after he has worked so hard to get his tongue in and keep it there. He will not be able to eat by mouth until this is done because of infection problems with site still open. So here are some prayer requests:

1)Hayden will not be so nervous about going into hospital for another surgery. God will calm his spirit.
2)This surgery will clear up and heal w/o problems or set backs
3)We will be able to get trach out and Hayden will be able to get swallow study done and be able to eat by mouth again.

Needless to say we have had the air let out of our balloons again hearing that the incision is not healed. It seems this tour of duty is never going to end for our little hero. He has been such a trooper thru it all. God continues to show us in baby steps what we are to do next and we are trying to be patient but it seems so hard to watch Hayden have to go thru more surgery when he has worked so hard at getting better. It breaks your heart to know we are going to have to tell him on Friday he will have to go back for more. Please pray that we will be able to reasure him and he will be able to be at peace with going back for another round.

Some dear sweet friends from Lewisburg came to visit us today for a few days and brought us some home cooked meals. Everyone got to enjoy it except Hayden. But they also brought all kinds of prizes for Mason and Hayden. So for Hayden he could care less about eating he was to busy playing. We are so grateful for family and friends who minister to us in such special ways.
God is using you to show us how much He loves us. So thanks for being a blessing to us by allowing God to use you. We love you all.

Still Praising Him,
Mimi

Tuesday, November 4, 2008

Tues Eve

Hello everyone,
This day has been quite eventful with the election outcome. Needless to say we did not get to vote.

Hayden continues to progress well with swelling of his tongue. He is keeping it in better today than he has been.We visited the Little Rock Zoo today and everyone enjoyed seeing the animals. Some days I feel I am living in the zoo.....HAHA!!!We did on the other hand hear from Dr. El Baba (who is Dr. Al-Mefty's neuro at Children's) and he is seeing Hayden and Mom and Dad on Thurs at 11:30. He is also setting up appt. with Dr. of ENT who closed incision from brain surgery to check and see if it is healing correctly. Dr. El Baba is also setting up a swallow test. He is trying to it get set up for Wed. or Thurs. so Hayden can eat real food soon we hope if he proves he is swallowing well. We also want to get trach out.So please pray that will go well.Then possibly we will get to leave here and go home for a while real soon. Dr. Al-Mefty will be out of the country for the month of November so we are not planning the surgery for November at least. But who knows until we talk to the Dr. El Baba on Thursday and he talks to Dr. Al-Mefty by phone we will not get decision on future surgery.

For now we would just like to get a good report regarding incision healing correctly and swallowing ok and getting the trach out would be a much answered prayer. We are looking forward to going home for a while.

We are so thankful for God's blessings thus far in the healing process and continue to look to Him for complete healing for Hayden. Thanks again for all the comments, prayers and goodies for Hayden and family.

PS> TO: Allison, Reese and Fuller and Family-- Hayden & Mason loved the video and prizes.....

Still Praising Him for His goodness,
Mimi

Monday, November 3, 2008

Monday moments

Hello everyone,
Just wanted to let everyone know that we were not able to see the Dr. today. We waited until lunch because they were suppose to call and let us know about appt and when we did not receive a call we called them. The nurse said the Dr. was out today and that she would speak to him on Tues. Am first thing and then let us know about appt., etc. Christy explained that we wanted to get the ball rolling on a swallow study and incision check, etc. The nurse said she would explain that to Dr. so we will see. It is hurry up and wait around here even with a great hospital.

Hayden continues to improve with keeping tongue in his mouth. We have to keep after him by saying turtle, turtle so he pulls his tongue back in and gives us a glare that only he and brother can give. We know he is getting tired of us saying it but we just want him better so we can get out of here. We were so bored we went to Target just to get out of here for a while and that was ok until Mason decided he was going to drive the buggy......BIG MISTAKE......He is so head strong. He has definately hit the terrible two's big time. As if the buggy driving was not enough he decided to climb under the clothes rack while Mom was on the phone and Mimi was trying to look at some PJ's he does some disgusting smelling business in his diaper. People are looking at me and trying to steer clear around me wandering what that smell is because they don't see Mason which was quite embarrasing. So we then get him out from under the clothes rack and go change him and he is not happy with getting out from under the clothes rack. So needless to say it was quite a shopping experience. Oh well......life with a preschooler..(Thought you all might need a good chuckle.)

Well we are all worn out and it is time for bed so I must close for now.I will let you know about Dr. visit on Tues.

Thanks for all the prayers. Also Jenna thanks for making the blog a little more personal and colorful. We love you.

Still Praising Him,
Mimi

Sunday, November 2, 2008

Sunday Eve

Hello Family and Friends,
Well another day at this motel has come and gone and I am posting to keep from eating.HaHa!!
I am so ready to get out of here. Hayden has been the same as myself, he is sooooooo ready also.
Hopefully on Monday we will get some kind of news about future.

Prayer requests as follows:
1) Swelling will continue to subside in tongue
2)Dr office will call early to get them in to see him on Monday early.
3)They will get good news about healing and will be able to get swallow study done asap and everything will be ok with swallowing and get trach tube out and Hayden will again be able to eat regular food w/o problems
4)Make the right decision about future surgery etc.
5)We get to get out of Little Rock until after the holidays if it does not cause any risk factors with Hayden.

Hayden has had a pretty good day again today. He still gets pooped out easily and you can see that he clearly wants to keep going but his little body says I need rest. So needless to say we are all being couch potatoes so that means Mimi and Mason are climbing the walls to get outdoors which we do when it is pretty and warm. Hayden, Daddy and I actually took a walk today and picked up acorns and pretty colored leaves. While Mason and Mommy took their baths.

Hayden's tongue is still swollen but he can a least pull it inside his mouth and we can see his teeth which is great because it was so big he was not able to pull it in his mouth as of end of last week.

God is faithful!!!!We just have to be patient and that in itself is very hard when you want yesterday, but we are learning through this tour of duty.

We miss you all and thank you for all the kind comments, cards and prizes (surprises) for the boys. Again thank you for all the prayers.......

Still Praising Him for His Love, Mercy and Amazing Grace,
Mimi

Saturday, November 1, 2008

Saturday Evening Post

Happy Saturday guys!
It has been a great day here in this Little Rock Hotel. Hayden has felt good all day today. He has had much more energy it seems. The swelling in his tongue has gone down considerably today. He has worked very hard keeping it in. We are playing a little game to keep the turtle in. The turtle being his tongue. We had gotten some guards like football players wear but he has thrown a fit about wearing them so we said he had to pull it in on his own so..hence the game we are playing. This has to be his idea or he's not going to do it. I DO NOT know where he has gotten being so hard headed from!!! HA! I must confess for those of you all that don't know me I am pretty stubborn so he gets it naturally!!


i am ready to come home!!!!!!!!!!!! from hayden

He says he loves you guys!! He's already tired of typing.

We will spend the rest of the weekend relaxing.
Thanks again for all the prayers being lifted up. I have truly seen God's hand in all this and how it has touched so many peoples lives. I will say it has not always been fast enough or easy enough at times. But..like I told Hayden we are a team and ANYTHING worth having takes work and perseverance. God has taken care of us and He who began a good work will be faithful to complete it!!!


Love Ya,
Christy