The Life of Truman

Note: These are posts (mostly by Micah) on his fb page. I have been coping them and keeping them in a journal.

This journey for them has been especially tender and dear to my husband and I as we have walked this same journey twice with two of our children who are waiting for us in heaven.

Four short months but a life complete!

November 7, 2011
Truman Lane Heatwole was born at 10:45 pm last night! I am a proud dad once again! =) PTL

November 9, 2011
Truman Lane could use some prayers right now! To make a long story short he doesn’t have much movement of his arms and legs. It doesn’t seem as though his muscles have developed properly. We are praying that they will grow so that he doesn’t have to have more test done. This is obviously a very short note about a complicated thing but prayer isn’t complicated so CARRY ON!! =)

November 18, 2011…Back from the doctor. The standard test they ran on Truman came back clear. So now the next step is going to University of Virginia (UVA-Charlottesville, VA) to get genetic testing done on him. We are thankful for all the prayers and are thankful that the ball has started to roll into finding out what the problem is! Continue to pray for us and pray for a clear diagnosis!
November 21, 2011 …Truman will be going for genetic testing at UVA (Charlottesville) Nov. 28 at 9:30! Thankful that God opened this door because they were saying it was going to be three weeks before they could get him in!
November 29, 2011…Well we had a successful appointment today for Truman, but the waiting isn’t over. In about 2 weeks we should have some test results back and if they come back negative, then more tests will be done and so on until they find something or he starts moving!!! 🙂 Thanks for all the prayers being sent up on our behalf!
December 6, 2011 …We got the results from Truman’s test back today. It was not great news. He tested positive for Werdnig Hoffman disease. We are still praying for a miracle, but we are also aware of the fact that unless there is one we will probably be laying our little boy to rest at some point. We thank everyone for their prayers and support!

December 12, 2011…What a path we have been called to! The doctors visit, on Friday at UVA, went well. We didn’t really know what to expect. It was mostly talking to doctors, counselors, and people we will need to see in the future. A lot of talking about the decisions we will need to make in the future. Sunday night was a special night for us. Truman played baby Jesus in the church play. I will admit it was more then a little emotional to see him up there. It was so sad but yet so sweet at the same time! He was representing the part of Jesus and he may also be the first to see Jesus! Exciting but conflicting stuff!

Continue to pray for us and Truman!

December 23, 2012: Truman…Truman…..Truman! I have been told that it is a time for me to give an update……so here goes! =)

What a blessed man I am! Being that it is the season of Christ; I have been thinking a lot about the blessings that I have been given! It is easy to get discouraged and question God in the hard times, but GOD IS GOOD! Christ is worthy of my praise! When I look at the situation we are in with Truman I sometimes think of Mary. (Jesus’ mother) The doctors have given my child a death sentence. There is really no hope without a miracle!…… I wonder if Mary would have felt this way at times. Did she know the prophesy? Surly she would hear the stories of the coming Messiah, and what the prophets said about how he would suffer. When she looked at Jesus did those thoughts go through her mind? Mary probably wondered if such a sweet baby could be hated by men, could carry the sins of all men, and be the Son of God? When I look at Truman; he also seems to perfect to have a death sentence! He is starting to grow and get a personality. He looks up at me with the sweetest of smiles. Can there really be a problem with him? NO!! TRUMAN IS PERFECT!!! When God created Truman… He was pleased!! And so am I!! I am thankful for Truman just the way he is! I don’t know the plans God has for him, but He does have plans! We have seen and answered prayer this week! Truman for the last couple of week has been a really bugger! Constant fussing, not eating well, and always needing to be held. For me (and Krista) this became very frustrating! We were in constant prayer, no longer praying for a miracle, just praying he would stop crying!!=) I got very discouraged! One night, after giving up trying to fall back asleep, I went out to Krista and said, “it is not enough that our son is going to die.. but he is going to be a pain the whole time he is here.” (I immediately felt guilty for saying that and slunk back to bed) =) Well, God must have heard my frustration that night! Since then it has been like a light-switch was switched! He has been so much more of a joy to be around and much more content! THANK YOU JESUS!! Here we are in the season of a Miracle! I am praying that this Christmas Christ would do a miracle in the life of Truman, and I am also thanking Him for the miracle He has done in MY life!! Continue to remember us! We are in constant need of prayer and support! Thank you so much for caring for us!

December 31, 2012…Truman…over Christmas we were down in FL. We had a great time of being with both sets of parents! It is a bit strange that both my parents and Krista’s ended up in the same small town thirteen hours away! Christmas was both a happy and sad time for me. It was a joy to celebrate the birth of my savior, and to reflect on what He has done for me! But it was also a sad time… realizing that next year our family may not be complete! This past week Truman has began to fuss a lot again. Nearly every time Krista would feed him he would only nurse for 3-5 minutes before throwing a fit. After being in contact with his doctor it was decided that he should go in for a visit. So yesterday he went to the doctor. Up until this point the whole ordeal with Truman has seemed like a dream. We know that there is a problem, but there haven’t been many signs other then the lack of movement. Well, yesterday it became more real. At the doctor they said that they are starting to notice signs of deterioration: quivering tongue, swallowing problems, and lack of energy. It is a sad realization of what may be in the road ahead! The thought of having to watch our son die over a several month period is stating to look like an unbearable task! We are praying for a miracle, but realize that there may not be one! I was thinking recently about Jesus in the garden. He prayed “let this cup pass from me.” God did not remove the cup! One thing I do know…. God will give Krista and I the grace and strength to come through! We are in desperate need of prayer! I thank everyone who has been praying for us, but I think the hardest days are still to come! Another thing that you can pray for is Lincoln! He has become very attached and protective over his brother! Pray that his heart stays soft to God through this process. We haven’t said anything to him about there being a problem, but I am sure that day will come! Lord, give us wisdom!

January 7, 2012…Truman…the last week has been one with ups and downs. It has been a hard week but it has also been one with little victories. As I have written in other posts Truman has been fussing more. Swallowing has also become difficult at times. Due to these factors his doctor wanted us to be evaluating him last weekend. They had given us a few pointers and ideas and wanted to see if they would help. Well, Sunday was probably the most difficult day so far! I was leading praise and worship Sunday morning so had I left for church early. Truman hadn’t eaten much during the night and had only drank one ounce in the morning. During the service Krista flagged me down. Truman was crying really hard and was really weak. He struggles with swallowing so when he doesn’t eat, he gets weak, and it becomes even harder. I ended up going to Wal-Mart during the service and getting a bottle so we could force feed him. Eventually he got enough so he was strong enough to swallow again. It was really hard! It was a first glimpse of what it may be like to have to watch our son die. It is so hard to watch him struggle with living! Since Sunday we have changed a few things. We have decided to bottle feed. This has helped a lot! We can now know exactly how much he is getting and he also seems to like it better. He has gained some weight and seems a little stronger. So we are thankful. Another thing we learned is that he loves to move. No matter how much he is fussing, if we start moving his legs or arms he will stop fussing! I can’t imagine how annoying it is for him that he has energy but can’t move much! Thursday we got our family pictures taken. The photographer came to our house. It was a really special time! We look forward to sharing them with you when we get them back next week! On Friday, it was such a blessing that my sister Kendra could come over and help Krista! Krista was able to get some house work done and was able to go into town and spend some time by herself! Friday was a special day for Truman and us. It was Truman’s 2 month birthday! Krista and I have decided to celebrate his month birthdays since he probably won’t have years. It was special to have my “brother” Philip and his wife and my two sisters, from Baltimore, and their families (minus Jake) here to celebrate. We are blessed! Because of some of Truman’s issues, they have moved up his UVA appointment to Monday morning at nine. Continue to pray for us as we go through this! Pray that God will give us wisdom as we work through different decisions we need to make. We need wisdom! Thanks for walking with us!!

January 24, 2012

I, Pat, spent the day with Krista and this is a pic I took of Truman. He was fussing and fussing. I finally told him to stop it and started talking to him about heaven and his grandpa Truman who was there waiting for him.  He started smiling and cooing.


Micah’s Picture.

February 9, 2012…Truman….we had a great visit to the doctor (doctors) yesterday. The appointments were supposed to be Wednesday and Thursday, but God worked it out that all our appointments were done by 1 p.m. on Wednesday! It was a long day! It started out with a rough night. Truman has been needing to be feed at least every three hours. We think this is because of some deterioration. That makes for some short nights, especially for Krista! So Wednesday morning we sleepily left for UVA at 7. Our first appointment was with the lung doctor at the hospital. As of now Truman’s lungs look clear and seem to be doing fine. Because he can’t cough we have been outfitted with a hospital grade suction machine, and are waiting to get a cough assist machine. The suction machine has a catheter that can go the whole way down to his lungs and suction out anything that may be in the way. I am not sure how the cough machine works yet but it somehow simulates a cough. The next appointment was also at the hospital with the feeding tube specialist. Truman hasn’t gained any weight in the last 3 weeks. We have decided to go ahead and implant a feeding tube. They are working at lining up a time to meet with the surgeon and get it put in. This will include a hospital stay for Truman down at UVA but it shouldn’t be more then a couple of days. Our third appointment was with his regular doctor over at Kluge Children’s Rehab. It was a sad but also good day! It was sad because it is just another step at realizing that this is for real! It was hard to talk about getting a feeding tube especially. It was also good because we have known that it has been coming for a while and it will let Krista and I get more rest at night. A year ago we never would have thought that we would be able to get though this, but God is good! He has given us the grace we have needed. We are thankful for the Christian body that has surrounded and lifted us up in so many ways! It has been such a blessing to have Krista’s friend from Alabama here the last two weeks! She left today and I am already starting to wonder if Krista has the energy for our two needy boys! Thanks so much for all your prayer and support! One more thing. We had some prayer cards made. They have four pictures on the front and a write-up on the back briefly giving a description of the situation. If you would like one or know someone that does they will be available at our church (Dayton Mennonite) or can be picked up at our house. If you have any questions about them or anything else about the situation feel free to ask! Thanks again!!

February 16, 2012…Truman….tomorrow we head to UVA again. We will be meeting with the surgeon and doing some per-surgery things. Truman may be spending a couple of days there this weekend depending on when the surgery is going to happen. We welcome all prayers! =)

February 17, 2012…We are home again! Krista and Truman to.  Tru’s surgery is scheduled for next Thursday so we will go back down there for a couple of days then! Thanks for your prayers!

February 22, 2012…We will be leaving for UVA at 4:30 in the morning. Pray for Truman as he has surgery and gets a feeding tube! Also pray for strength for Krista and I!

February 23, 2012 …

7:37 AM…Truman went into surgery around 15 minutes ago

12:36 PM Truman is now out of surgery and we are up in a room. Truman was NOT impressed the first few hours out of surgery. He also had a reaction to something which caused a rash. All Things seem to be going well now though. He is sleeping and his rash has cleared up. Thanks so much for your prayers and support!

2:31 PM… well the sleep didn’t last long. Truman has been crying most the time he is awake. (which is most the time) I think that main thing is that he is really hungry. He hasn’t eaten since 4 this morning and wont be able to eat until the morning. =( Pray that God will give him peace in his heart and contentment in his tummy!

February 24, 2012

2:08 PM Truman has been doing really well today! It was such a blessing that last night he was able to get some sleep! He has been able to drink a little milk today. They are only letting him eat small amounts every three hours. He is not impressed with stopping but is being a good sport. We will hopefully be able to come home tomorrow morning. Pray that Krista and I won’t get to hyper because it does get boring here! =)

February 25, 2012…We are all home and resting soundly! Thanks for all your prayers and support. We are so glad to have this behind us!

February 26, 2012

March 5, 2012

March 10, 2012 (Saturday)
5:56 PM Truman…well, it has been awhile since I updated. I don’t have time right now to give as detailed of an update as I would like! Truman does now have his feeding tube and it has been a real blessing so far. Krista and I would especially covet your prayers now. Krista and Lincoln have been fighting a cold the last week. It is a cold that causes lots of congestion. It seems as though Truman is now getting it. This is a fairly serious problem. In the last few hours it has been a struggle for Truman to breathe correctly and comfortably. Please pray that he will be able to get some rest and Krista and I would have wisdom and peace! Thanks!

March 11, 2012 (Sunday)
9:20 AM…Truman…Well, His night was better then expected! After I sent out the first update, Truman was able to calm down and his breathing became a lot better. This morning it is once again a struggle. Continue to pray for us! These are trying times!!

2:28 PM… Pray for Truman! He is in serious condition! Pray that he will either go peacefully or that he would pull through easily! Thanks.

3:03 PM… We are waiting on an ambulance to take us to UVA.

8:50 PM Truman….what a day! Truman will be at UVA for the night. Tomorrow we will decide what to do. They feel like he will make it through the night, but the prognosis isn’t good. Thanks for your prayers and continue to lift us up!

Posted by Marj (Truman’s grandma) on fb…We are at UVA. Truman’s cold turned very serious early afternoon. Twice they tho’t they’d lost him. After consulting w/ dr. Micah called G&W (a medical transport) to bring him to where his doctors are familiar with his disease. He’s on oxygen now, with c-pap. His little tummy still really goes up & down but not like it was. This sudden plunge came kinda sudden. Please continue to pray for Micah & Krista. It’s a hard time.

March 12, 2012 (Monday)
8:16 AM …Truman…during the night the doctors did chest x rays and found that Truman may have Pneumonia. They are now treating that. He seems to have stabilized in the night some and his breathing doesn’t seem as labored. I don’t know what Truman will be like when we take him off all the equipment. I am confident from talking to the doctors that if we hadn’t come to the hospital when we did that he wouldn’t be alive now. Pray that Krista and I will have wisdom on how far to go medically, and when it is time to just lay him in Jesus hands to take home.

2:50 PM …well, this is quite a journey! We are so thankful for all our friends and family that are lifting us up. It is humbling to know that so many are lifting us up in prayer! Some of you don’t even know us! Well, we are at a crossroads. There have been decisions that have been hard to make through this whole ordeal, but none that are quite to the degree that the decisions have been today. We have decided to keep Truman on his breathing assist for today and tonight. If there haven’t been any improvements by morning we are planning or releasing him to Jesus. Our prayer is that if it is Gods will for us to keep him here that there would be a clear sign during the night. The hardest thing would be if there was just a little improvement in the morning! Thanks so much for all your love and encouragement!

March 13, 2012
Truman Lane Heatwole ….went to be with Jesus a little before 11 this morning. We are sad for our loss but have complete peace! Truman also is at peace and I am sure he is using his energy to run around with our other two children and a few of his cousins! That is sweet to think about! Lots of love and thanks from us! Continue to pray for us as this is just the beginning to a very hard week!

Thanks so much for all the prayers and support! Funeral service is as follows:
The funeral will be taking place at HARRISONBURG MENNONITE on Friday night at 7pm. This is due to a wedding going on at our church on sat. Try to make sure people that want to come know this. Friday At 5 pm there will be a meal. The meal will be served from 5-6. This is open to everyone that wants to come. Krista and I will be available to talk to people during this time. The funeral service will follow at 7. We will have the burial on Saturday at 10am. This will be at DAYTON MENNONITE. This is also open to anyone that wants to come.

Jeannette Heatwole captured a neat picture of the sky this evening.  We are calling it “Truman’s sky”!

More pictures can be seen on Molly Whitmore’s blog  http://mollywhitmoreblog.com/2012/04/05/the-heatwoles-family/ .  Molly is a professional photographer who took awesome pictures of Truman and the Heatwole family several weeks before his passing.  You will truly be blessed.  Thanks, Molly!

7 Comments »

  1. Simply beautiful…

    Like

  2. coleensr Said:

    . . . and incredibly sad. My heart bleeds for them.

    Like

  3. I came across this blog because our little boy- 3 weeks old – is being tested for the Werdnig-Hoffman disease. I almost feel as if I am reading my own blog! My husband is a worship pastor and we have an almost 3 year old boy. I find great comfort in your faith as you have dealt with this heavy loss… Thank you for sharing… It has helped me find strength about our own potential diagnosis.

    Like

    • Pat Said:

      Oh, my I want to keep in touch with you and would love to talk to you. I want to know your story. You have a journey ahead of you but God will be with you and walk with you. If you want our number is 804-598-4021.

      Like

  4. […] little over two years ago I posted several blogs about my nephew Micah’s son, Truman, who passed away from SMA or Werdnig Hoffman disease. SMA is a severe genetic disease attacking […]

    Like

  5. […] The Life of Truman […]

    Like


{ RSS feed for comments on this post} · { TrackBack URI }

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: